a day in the life of a disabled person essay

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Katie M. Golden

Katie M. Golden is a professional patient and advocate for people living with migraine.

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What’s a Typical Day Like When You Have a Disability?

Out of everything that was asked of me, i found answering this question to be the most important. “describe what you do in a typical day.” but our days aren’t typical, are they here was my reply. .

Katie Golden is a #teamHealthyWomen Contributor and this post is part of HealthyWomen's Real Women, Real Stories series.

Receiving mail from the Social Security Disability office is always a little frightening. Recently, an envelope showed up in my mailbox—it was time to recertify my disability .

It has been three years since I was awarded benefits. The Social Security Administration has the following guidelines on when and how often someone would be asked to recertify their condition:

If medical improvement is:

• “Expected,” your case will normally be reviewed within six to 18 months after your benefits start.
• “Possible,” your case will normally be reviewed no sooner than three years.
• “Not expected,” your case will normally be reviewed no sooner than seven years.

I fit into the “Possible” category. I rely on these benefits and can’t afford to miss anything in this process. I spend countless hours gathering up all the information I need so there would be no doubt that my chronic migraine disease was still stopping me from being able to have a “regular” job or lead a “regular” life.

On this particular form, out of everything that was asked of me, I found answering this question to be the most important: “Describe what you do in a typical day.”

But our days aren’t typical at all. Here was my reply.

Describe what you do in a typical day.

I do not have “typical days” anymore. I have low, medium, or high pain days. I have functioning, semi-functioning or debilitating days. With chronic migraine disease, I am never able to fully escape the pain as it is an everyday occurrence. My day depends on how intense the pain is and for how long.

I will illustrate how my days vary widely and without any warning. I make adjustments to my schedule throughout the day depending on the intensity of the symptoms, which I experience daily on varying levels. These symptoms include head pain, aphasia, allodynia, fatigue, phonophobia, photophobia, impaired cognitive dysfunction, nausea, akathisia and visual aura.

Low Pain/ Functioning Days

When I wake up at around 9 or 10 am with a pain level of 3-4, I know that this is the best I am going to feel all day. I am most productive for about an hour after waking up. I eat breakfast—usually yogurt and fruit. I take a handful of medication—both prescribed and over-the-counter—just to maintain a pain level that is tolerable.

I respond to emails and check the daily news. I may take some time to write, a practice that has become helpful to me in dealing with my illness. I also take this time to make doctor’s appointments and deal with insurance issues, which is a never-ending battle. Even on good days, if I do any housework I usually only focus on one area of my one-bedroom apartment, as this can be exhausting. During the day, my pain level spikes around 6-8, which forces me to take a nap for an hour or two mid-day. When I wake up, the pain has decreased slightly to about a 5.

I try to get in some form of exercise every day after napping. That may be taking a 30-minute walk, going to a yoga class or going on a bike ride. After one of these activities, I usually shower for the day. On a good day, I am able to run some errands, which I usually break up throughout the week in order to not increase my pain. The grocery store and laundry are two tasks that generally wear me out. While eating healthy is part of my life, making dinner can be challenging. I spend little time making dinner and my partner often helps in making meals and with clean-up.

I spend the evening watching TV, however, my pain increases and I become fidgety. With newly diagnosed Restless Leg Syndrome and Periodic Limb Movement Disorder, I find it very hard to sit still. Even with medications to manage the full-body, uncontrollable twitching and jerking movements, nighttime is very hard for me. The head pain generally spikes as well back up to a 7 or 8, making falling asleep difficult. I take another handful of medication to prevent worsening migraine attacks and to control the symptoms for the next day.

This is me on a low-pain / functioning day:

High Pain and Debilitating Days

I try to stick to a normal sleep schedule so that I wake up between 9 and 10 am. I eat breakfast depending on how nauseated I am. On these days, leaving the house, driving and exercise are out of the question. It is rare that my symptoms improve throughout the day—they typically get worse even when using rescue medication. Some of the medications I take to cut down the pain and inflammation on high pain/debilitating days cause side effects that make me drowsy. That, coupled with the excruciating pain, cause me to spend the majority of the day in bed. I spend little time on the internet or watching TV.

I use sleep as a coping mechanism. Even while sleeping, my body is tensed up to battle the pain. I curl into a ball to protect myself and often find fingernail marks in my palms because I’ve been clenching my fists while asleep. I also grind my teeth and need to wear a mouth guard.

During long stretches of time with high levels of pain, my sleep cycle is interrupted, my food intake is altered, showering is a chore and my body feels like it has been beaten up. I can be in this state for days, weeks or even months at a time. I rarely see friends or spend time outside when this happens. It can take weeks to build my strength back up.

I spend 80% of my time in my apartment. The 20% that I try to venture out has to be carefully planned out. Will there be any noise, lighting, food or other triggers that will make the migraine attacks worse?

I have to take medication before I leave and have all medications with me for any possible scenario when I leave the house. I need an exit strategy. Will I be able to lie down if the pain is suddenly unbearable? Do I have a way home if I feel I can’t drive? Will my impaired cognitive dysfunction cause me to become disoriented, forgetful, or lost?

I always carry a notebook with me because I can easily forget my tasks or what people tell me. I build in extra time because any task now takes me twice as long to complete. I have a small radius (about 5 miles) around my house where I am comfortable going by myself. Anywhere outside of my comfort zone, I prefer to have someone with me no matter what my pain level is that day.

These questions and considerations dictate my “typical day.”

A version of this post originally appeared at GoldenGraine.com .

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Disability and Health Stories from People Living with a Disability

• Nickole's Story
• Jerry's Story
• Justin's Story
• Suhana's Story

Real Stories from People living with a Disability

Nickole cheron’s story.

In 2008, a rare winter storm buried Portland, Oregon under more than a foot of snow. The city was gridlocked. Nickole Cheron was stuck in her home for eight days. Many people would consider that an inconvenience. For Nickole, whose muscles are too weak to support her body, those eight days were potentially life-threatening.

Born with spinal muscular atrophy, a genetic disease that progressively weakens the body’s muscles, Nickole is fully reliant on a wheelchair and full-time caregivers for most routine tasks. Being alone for eight days was not an option. So Nickole signed up for “ Ready Now! [PDF – 4.8MB] ,” an emergency preparedness training program developed through the Oregon Office of Disability and Health .

“The most important thing I learned from ‘Ready Now!’ was to have a back-up plan in case of an emergency situation ,” she said. “When I heard the snow storm was coming, I emailed all my caregivers to find out who lived close by and would be available. I made sure I had a generator, batteries for my wheelchair, and at least a week’s supply of food, water and prescription medication.”

Nickole said the training was empowering, and reinforced her ability to live independently with a disability. She felt better informed about the potential risks people with disabilities could encounter during a disaster. For example, clinics might close, streets and sidewalks might be impassable, or caregivers might be unable to travel.

Among the tips Nickole learned from Oregon’s “Ready Now!” training are:

• Develop a back-up plan. Inform caregivers, friends, family, neighbors or others who might be able to help during an emergency.
• Stock up on food, water, and any necessary prescription medications, medical supplies or equipment. Have enough to last at least a week.
• Make a list of emergency contact information and keep it handy.
• Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.
• Learn about alternate transportation and routes.
• Understand the responsibilities and limitations of a “first responder” (for example, members of your local fire department of law enforcement office) during a disaster.

“This training shows people with disabilities that they can do more to triage their situation in a crisis than anyone else can,” she said. “‘Ready Now!’ encourages people with disabilities to take ownership of their own care.”

CDC would like to thank Nikole and the Oregon Office of Disability and Health for sharing this personal story.

Learn about emergency preparedness for people with disabilities »

Jerry’s Story

Jerry is a 53 year old father of four children. He’s independent, has a house, raised a family and his adult kids still look to him for support. Jerry recently retired as a computer programmer in 2009, and competes and coaches in several sports. This “healthy, everyday Joe, living a normal life” has even participated in the Boston Marathon. Jerry also has had a disability for over 35 y ears. In 1976 on December 3 (the same day that International Persons with Disabilities Day is recognized) Jerry was hit by a drunk driver. The accident left him as a partial paraplegic.

Jerry’s life is not defined by his disability. He lives life just like anyone else without a disability would live their life. “There’s lots I can do, and there are some things that I can’t do,” said Jerry. “I drive, I invest money. I’m not rich, but I’m not poor. I enjoy being healthy, and being independent.”

As a person with a disability, however, Jerry has experienced many barriers. Recovering from recent rotator cuff surgery, his rehabilitation specialists “couldn’t see past his disability”, administering tests and delivering additional rehabilitation visits that a person without a disability wouldn’t receive. He once was being prepared for surgery when a nurse proclaimed “he doesn’t need an epidural, he’s a paraplegic.” Jerry had to inform the nurse that he was only a partial paraplegic and that he would indeed need an epidural.

Jerry was in line at an Alabama court house to renew his parking permit and also renew his son’s registration. He watched a worker walk down the line and ask people “what do you need?” When she got to Jerry and saw his wheelchair, he was asked “who are you here with?” And Jerry finds it difficult to go to concerts and baseball games with a large family or friends gathering, because rarely are handicap-accessible tickets available for more than two people.

Jerry has seen a lot in over 35 years as someone living with a disability. He’s seen many of the barriers and attitudes towards people with disabilities persist. But he’s also seen many positive changes to get people with disabilities physically active through recreational opportunities such as golf, fishing and even snow-skiing. There are now organizations such as Lakeshore Foundation – where Jerry works part-time coaching youth basketball and track – that provide recreational opportunities.

Jerry states: “I don’t expect the world to revolve around us. I will adapt – just make it so I can adapt.”

Justin’s Story

Justin was first diagnosed with a disability in the form of ADD (attention deficit disorder, now known as ADHD, or attention-deficit/hyperactivity disorder) at the age of 5 years. The diagnosis resulted in his removal from a regular classroom environment to special education courses. Justin’s parents were informed by Justin’s educators that he probably wouldn’t graduate high school, much less college.

Years later, as a young adult, Justin developed Meniere disease (an inner ear disorder), which affected his hearing and balance. The onset of the disorder left Justin with the scary reality that he could permanently lose his hearing at any time. Justin recalled a former supervisor taking advantage of this knowledge with an inappropriate prank: While speaking in a one-on-one meeting, the sound from the supervisor’s mouth abruptly halted, while his lips continued to move. Justin thought he had gone deaf – until the supervisor started laughing – which Justin could hear. Behaviors like the above took its toll on Justin’s confidence – yet, he knew he could contribute in society.

Spurred in part by adversity, Justin went back to school, earned a business degree, and shortly after, entered the commercial marketing industry. However, despite his education and experience, Justin was still regularly subject to the same stigma. Many of Justin’s work experiences over the course of his career left him feeling ashamed, guilty, offended, and sometimes, even intimidated. Rather than instilling confidence, it left him demoralized – simply because he was differently abled.

In July of 2013, everything changed for Justin. He joined the Centers for Disease Control and Prevention working as a contractor in the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities. Justin’s colleagues put an emphasis on making him feel comfortable and respected as a member of a diverse and productive workforce. They welcomed Justin’s diversity, positively contributing to his overall health.

The mission of the Division of Human Development and Disability is to lead public health in preventing disease and promoting equity in health and development of children and adults with or at risk for disabilities. One in two adults with disabilities does not get enough aerobic physical activity 1 , and for Justin, regular physical activity is important to help him combat potentially lethal blood clots due to a genetic blood clotting disorder that he has. Every working hour, Justin walks for a few minutes, stretches, or uses his desk cycle. Justin also participates in walking meetings, which he believes leads to more creative and productive meetings.

Stories such as Justin’s are reminders that employment and health are connected. CDC is proud to support National Disability Employment Awareness Month every October. The awareness month aims to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

Suhana’s Story

Suhana has a sister, Shahrine, who is older by 18 months. While Shahrine’s mother was pregnant with Suhana, their uncle came to town for a visit. During the visit, their uncle was quick to notice that Shahrine did not seem to be talking at an age appropriate level or respond when called upon. Shahrine would also turn up the volume on the television and radio when others could hear it without difficulty. Shahrine’s parents thought that her speech development and behavior were normal for a toddler, but thanks to the uncle expressing his concerns, the family soon took action. A hearing test found that Shahrine was hard of hearing.

Due to Shahrine’s diagnosis, Suhana received a hearing screening at birth and was found to be hard of hearing, as well. Had it not been for the concerns raised by the children’s uncle, not only would Shahrine’s hearing loss have possibly gone on longer without being detected, but Suhana would most likely not have had a hearing screening at birth.

As a result of their early diagnoses, Suhana and Shahrine’s parents were able to gain the knowledge they needed to make sure both of their children could reach their full potential in life. They had access to early services from a team of physicians, speech therapists, counselors, and teachers.

Suhana credits her parents for her own successes, saying that she couldn’t have made it as far as she has without their support and patience. Today, Suhana is employed at the Centers for Disease Control and Prevention (CDC) as an epidemiologist with the agency’s Early Hearing Detection and Intervention (EHDI) program. All children who are deaf or hard of hearing receive critical services they need as a result of the EHDI program, which funds the development of data systems and provides technical assistance to help improve screening, diagnosis and early intervention for these infants. When children who are deaf or hard of hearing receive services early, they are more likely to reach their full potential and live a healthy, productive adult life.

CDC is proud to support National Disability Employment Awareness Month every October. The goals of the awareness month are to educate the public about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

• Centers for Disease Control and Prevention. Vital Signs. [updated 2014 May 6; cited 2014 October 10] Available from: https://www.cdc.gov/vitalsigns/disabilities/

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Book Reviews

In 2 essay collections, writers with disabilities tell their own stories.

Ilana Masad

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More than 1 in 5 people living in the U.S. has a disability, making it the largest minority group in the country.

Despite the civil rights law that makes it illegal to discriminate against a person based on disability status — Americans with Disabilities Act passed in 1990 — only 40 percent of disabled adults in what the Brookings Institute calls "prime working age," that is 25-54, are employed. That percentage is almost doubled for non-disabled adults of the same age. But even beyond the workforce — which tends to be the prime category according to which we define useful citizenship in the U.S. — the fact is that people with disabilities (or who are disabled — the language is, for some, interchangeable, while others have strong rhetorical and political preferences), experience a whole host of societal stigmas that range from pity to disbelief to mockery to infantilization to fetishization to forced sterilization and more.

But disabled people have always existed, and in two recent essay anthologies, writers with disabilities prove that it is the reactions, attitudes, and systems of our society which are harmful, far more than anything their own bodies throw at them.

About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson, collects around 60 essays from the column, which began in 2016, and divides them into eight self-explanatory sections: Justice, Belonging, Working, Navigating, Coping, Love, Family, and Joy. The title, which comes from the 1990s disability rights activist slogan "Nothing about us without us," explains the book's purpose: to give those with disabilities the platform and space to write about their own experiences rather than be written about.

While uniformly brief, the essays vary widely in terms of tone and topic. Some pieces examine particular historical horrors in which disability was equated with inhumanity, like the "The Nazis' First Victims Were the Disabled" by Kenny Fries (the title says it all) or "Where All Bodies Are Exquisite" by Riva Lehrer, in which Lehrer, who was born with spina bifida in 1958, "just as surgeons found a way to close the spina bifida lesion," visits the Mutter Museum in Philadelphia. There, she writes:

"I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. [...] I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born."

Later, she adds, "I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon."

Other essays express the joys to be found in experiences unfamiliar to non-disabled people, such as the pair of essays by Molly McCully Brown and Susannah Nevison in which the two writers and friends describe the comfort and intimacy between them because of shared — if different — experiences; Brown writes at the end of her piece:

"We're talking about our bodies, and then not about our bodies, about her dog, and my classes, and the zip line we'd like to string between us [... a]nd then we're talking about our bodies again, that sense of being both separate and not separate from the skin we're in. And it hits me all at once that none of this is in translation, none of this is explaining. "

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong Disability Visibility Project hide caption

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong

While there's something of value in each of these essays, partially because they don't toe to a single party line but rather explore the nuances of various disabilities, there's an unfortunate dearth of writers with intellectual disabilities in this collection. I also noticed that certain sections focused more on people who've acquired a disability during their lifetime and thus went through a process of mourning, coming to terms with, or overcoming their new conditions. While it's true — and emphasized more than once — that many of us, as we age, will become disabled, the process of normalization must begin far earlier if we're to become a society that doesn't discriminate against or segregate people with disabilities.

One of the contributors to About Us, disability activist and writer Alice Wong, edited and published another anthology just last year, Resistance and Hope: Essays by Disabled People , through the Disability Visibility Project which publishes and supports disability media and is partnered with StoryCorps. The e-book, which is available in various accessible formats, features 17 physically and/or intellectually disabled writers considering the ways in which resistance and hope intersect. And they do — and must, many of these writers argue — intersect, for without a hope for a better future, there would be no point to such resistance. Attorney and disability justice activist Shain M. Neumeir writes:

"Those us who've chosen a life of advocacy and activism aren't hiding from the world in a bubble as the alt-right and many others accuse us of doing. Anything but. Instead, we've chosen to go back into the fires that forged us, again and again, to pull the rest of us out, and to eventually put the fires out altogether."

You don't go back into a burning building unless you hope to find someone inside that is still alive.

The anthology covers a range of topics: There are clear and necessary explainers — like disability justice advocate and organizer Lydia X. Z. Brown's "Rebel — Don't Be Palatable: Resisting Co-optation and Fighting for the World We Want" — about what disability justice means, how we work towards it, and where such movements must resist both the pressures of systemic attacks (such as the threatened cuts to coverage expanded by the Affordable Care Act) and internal gatekeeping and horizontal oppression (such as a community member being silenced due to an unpopular or uninformed opinion). There are essays that involve the work of teaching towards a better future, such as community lawyer Talila A. Lewis's "the birth of resistance: courageous dreams, powerful nobodies & revolutionary madness" which opens with a creative classroom writing prompt: "The year is 2050. There are no prisons. What does justice look like?" And there are, too, personal meditations on what resistance looks like for people who don't always have the mobility or ability to march in the streets or confront their lawmakers in person, as Ojibwe writer Mari Kurisato explains:

"My resistance comes from who I am as a Native and as an LGBTQIA woman. Instinctively, the first step is reaching out and making connections across social media and MMO [massively multiplayer online] games, the only places where my social anxiety lets me interact with people on any meaningful level."

The authors of these essays mostly have a clear activist bent, and are working, lauded, active people; they are gracious, vivid parts of society. Editor Alice Wong demonstrates her own commitments in the diversity of these writers' lived experiences: they are people of color and Native folk, they encompass the LGBTQIA+ spectrum, they come from different class backgrounds, and their disabilities range widely. They are also incredibly hopeful: Their commitment to disability justice comes despite many being multiply marginalized. Artist and poet Noemi Martinez, who is queer, chronically ill, and a first generation American, writes that "Not all communities are behind me and my varied identities, but I defend, fight, and work for the rights of the members of all my communities." It cannot be easy to fight for those who oppress parts of you, and yet this is part of Martinez's commitment.

While people with disabilities have long been subjected to serve as "inspirations" for the non-disabled, this anthology's purpose is not to succumb to this gaze, even though its authors' drive, creativity, and true commitment to justice and reform is apparent. Instead, these essays are meant to spur disabled and non-disabled people alike into action, to remind us that even if we can't see the end result, it is the fight for equality and better conditions for us all that is worth it. As activist and MFA student Aleksei Valentin writes:

"Inspiration doesn't come first. Even hope doesn't come first. Action comes first. As we act, as we speak, as we resist, we find our inspiration, our hope, that which helps us inspire others and keep moving forward, no matter the setbacks and no matter the defeats."

Ilana Masad is an Israeli American fiction writer, critic and founder/host of the podcast The Other Stories . Her debut novel, All My Mother's Lovers, is forthcoming from Dutton in 2020.

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Accessibility plays a fundamental role in the day-to-day lives of individuals with disabilities.

People with disabilities live successful lives by adapting existing circumstances to suit their unique needs. The following stories do not come from real individuals with disabilities, but they tell common experiences with accessibility and represent how real disabled individuals navigate accessibility.

Kari, 25, totally blind

Kari is an undergraduate student, single mother, and a totally blind writer for an online technology news website. When Kari needs to complete her school studies or work on an article, she uses speech-recognition and screen-reading software to interact with her computer. She also uses braille and audio books to supplement her research and other schoolwork. Although drastic changes in her environment can be a big challenge for her, Kari gets around by using a cane to feel out her environment and detect obstacles or changes in terrain.

Darlene, 41, stroke victim

Darlene is a manager of a university support center. The stroke she suffered last year left her with some oral communication challenges and only partial use of her left arm and hand. Meanwhile, however, Darlene has discovered a love for interior decorating as a personal hobby. In both of her roles, she uses a specialized keyboard that addresses her impairment, and the sticky keys accessibility feature of her computer also helps her operate the machine effectively.

Trulanni, 32, totally deaf

Since birth, Trulanni has been totally deaf. He found success as a computer programmer and analyst and has since become a project manager for his university. Trulanni writes short fiction novels in his personal time, which gives him a break from his highly technical work. He communicates with colleagues by text-based computer technology and uses a signing translator in-person. When consuming multimedia presentations or audio/video files, however, Trulanni needs text captions to access all the information conveyed.

Osman, 28, paralyzed below his waist

Osman is a web designer at the university where he received his undergraduate degree. Several years ago, an accident left Osman paralyzed below the waist. He uses a wheelchair for transportation, which means ramps and elevators are necessary for him to access buildings and their rooms. The time it takes Osman to get from place to place affects the time he spends on every task. He must calculate and plan his movements every day, and anyone who works with Osman must also consider the effect of his mobility in their encounters.

Eden, 37, diabetic

Eden has been diabetic since she was six years old. Now she is a graduate student and college teaching assistant, but also a wife of 12 years and mother of four children. In addition to managing her diet, she must inject medication at each meal, at least twice a day. Sometimes her ability to focus or endure lengthy meetings can be affected. With such dietary demands, Eden sometimes requires extra patience or flexible timing to function in her numerous roles as wife, mother, student, and teaching assistant. Family, colleagues, and students give Eden extra attention for these circumstances.

Siraj, 20, epileptic

Since Siraj arrived from Calcutta, he has been an active student, musician, and ambassador. Siraj has epilepsy, but he maintains a 4.0 GPA through his sophomore year as a philosophy major. This year, he also became a cultural ambassador to the student body for Indian culture. Siraj's epilepsy requires an environment with no flashing lights or strobe effects in lighting. He is accommodated with extra time during tests and by classrooms with instructors trained to respond to seizure events.

D'Schehl, 49, post-traumatic stress disorder (PTSD)

D'Schehl has simple PTSD from her career in the police department hostage team. Now she works with students at the counseling services center of a university, assisting students with coping skills and decision-making. Focusing on others' needs helps D'Schehl divert attention from her own mental and emotional state. Sometimes, D'Schehl relives some of her previous experiences without warning, and those situations can create high emotions and sudden outward reactions. Her PTSD requires that she remove herself from activities at times to recompose herself. D'Schehl adapts by taking breaks, preparing key people at work or events to respond to her symptoms, and participating in psychiatric treatment for herself.

Giancarlo, 42, allergy disorder

Giancarlo is a professor of horticulture who suffers from mast cell activation disorder, which essentially causes him to encounter allergens in virtually any and all settings. Giancarlo, also an Italian citizen, overcomes his potentially isolating condition with a pharmaceutical pump implant. Without it, Giancarlo would have an overwhelming allergic reaction to every scent, particle, and fiber he encounters. Sometimes he needs to break away and lie down to let a reaction pass. He has a team of capable teacher's assistants and understanding superiors. His students sympathize with their favorite professor and often accommodate him in any way they can.

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Parenting a child with a disability, chronic pain and mental health, preparing for a medical appointment, are you at risk for diabetes, hearing loss and mental health.

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Making the adjustment

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Ask for (and accept) help and support

Find things to do that give you meaning and purpose, make your health a top priority, living well with a disability.

Adapting to life with a disability is never easy, but there are ways to help yourself cope with limitations, overcome challenges, and build a rewarding life.

Adjusting to life with a disability can be a difficult transition. We all tend to take our health for granted—until it’s gone. Then, it’s all too easy to obsess over what we’ve lost. But while you can’t go back in time to a healthier you or wish away your limitations, you can change the way you think about and cope with your disability. You are still in control of your life and there are many ways to improve your independence, sense of empowerment, and outlook. No matter your disability, it’s entirely possible to overcome the challenges you face and enjoy a full—and fulfilling—life.

Most of us expect to live long, healthy lives. So, when you’re hit by a disabling illness or injury, it can trigger a range of unsettling emotions and fears. You may wonder how you’ll be able to work, find or keep a relationship, or even be happy again. But while living with a disability isn’t easy, it doesn’t have to be a tragedy. And you are not alone. Millions of people have traveled this road before you (the CDC estimates that 1 in 4 Americans lives with a disability) and found ways to not just survive, but thrive. You can, too.

It can be incredibly difficult to accept your disability. Acceptance can feel like giving in—throwing in the towel on life and your future. But refusing to accept the reality of your limitations keeps you stuck. It prevents you from moving forward, making the changes you need to make, and finding new goals.

Give yourself time to mourn

Before you can accept your disability, you first need to grieve . You’ve suffered a major loss. Not just the loss of your healthy, unlimited body, but likely the loss of at least some of your plans for the future.

Don’t try to ignore or suppress your feelings. It’s only human to want to avoid pain, but just like you won’t get over an injury by ignoring it, you can’t work through grief without allowing yourself to feel it and actively deal with it. Allow yourself to fully experience your feelings without judgement.

You’re likely to go through a roller coaster of emotions —from anger and sadness to disbelief. This is perfectly normal. And like a roller coaster, the experience is unpredictable and full of ups and downs. Just trust that with time, the lows will become less intense and you will begin to find your new normal.

You don’t have to put on a happy face. Learning to live with a disability isn’t easy. Having bad days doesn’t mean you’re not brave or strong. And pretending you’re okay when you’re not doesn’t help anyone—least of all your family and friends. Let the people you trust know how you’re really feeling. It will help both them and you.

Coming to terms with your new reality

It’s healthy to grieve the life you’ve lost, but it’s not healthy to continue looking back and wishing for a return to your pre-disability “normal.” As tough as it is, it’s important to let go of the past and accept where you are.

• You can be happy, even in a “broken” body. It may not seem like it now, but the truth is that you can build a happy, meaningful life for yourself, even if you’re never able to walk, hear , or see like you used to. It may help to search out inspiring stories of people with disabilities who are thriving and living lives they love. You can learn from others who have gone before you, and their successes can help you stay motivated during tough times .
• Don’t dwell on what you can no longer do. Spending lots of time thinking about the things your disability has taken from you is a surefire recipe for depression . Mourn the losses, then move on. Focus on what you can do and what you hope to do in the future. This gives you something to look forward to.
• Learn as much as possible about your disability. While obsessing over negative medical information is counterproductive, it’s important to understand what you’re facing. What’s your diagnosis? What is the typical progression or common complications? Knowing what’s going on with your body and what to expect will help you prepare yourself and adjust more quickly.

Find ways to minimize your disability’s impact on your life

It goes without saying that your disability has already changed your life in big ways. It doesn’t help to live in denial about that. You’ve got limitations that make things more difficult. But with commitment, creativity, and a willingness to do things differently, you can reduce the impact your disability has on your life.

Be your own advocate. You are your own best advocate as you negotiate the challenges of life with a disability, including at work and in the healthcare system. Knowledge is power, so educate yourself about your rights and the resources available to you. As you take charge, you’ll also start to feel less helpless and more empowered.

[Read: Disability at Work]

Take advantage of the things you can do. While you may not be able to change your disability, you can reduce its impact on your daily life by seeking out and embracing whatever adaptive technologies and tools are available. If you need a device such as a prosthetic, a white cane, or a wheelchair to make your life easier, then use it. Try to let go of any embarrassment or fear of stigma. You are not defined by the aids you use.

Set realistic goals—and be patient. A disability forces you to learn new skills and strategies. You may also have to relearn simple things you used to take for granted. It can be a frustrating process, and it’s only natural to want to rush things and get back to functioning as quickly as possible. But it’s important to stay realistic. Setting overly aggressive goals can actually lead to setbacks and discouragement. Be patient with yourself. Every small step forward counts. Eventually, you’ll get there.

Speak to a Licensed Therapist

BetterHelp is an online therapy service that matches you to licensed, accredited therapists who can help with depression, anxiety, relationships, and more. Take the assessment and get matched with a therapist in as little as 48 hours.

When struggling with a disability, it’s easy to feel completely misunderstood and alone. You may be tempted to withdraw from others and isolate yourself. But staying connected to others will make a world of difference in your mood and outlook.

Tips for finding (and accepting) help and support

Nurture the important relationships in your life. Now, more than ever, staying connected is important. Spending time with family and friends will help you stay positive, healthy, and hopeful. Sometimes, you may need a shoulder to cry on or someone to vent to. But don’t discount the importance of setting aside your disability from time to time and simply having fun .

Joining a disability support group. One of the best ways to combat loneliness and isolation is to participate in a support group for people dealing with similar challenges. You’ll quickly realize you’re not alone. Just that realization goes a long way. You’ll also benefit from the collective wisdom of the group. Support groups are a great place to share struggles, solutions, and encouragement.

Accepting help doesn’t make you weak. Refusing to seek out needed assistance can delay your progress or make you worse, either physically or emotionally. Let go of the fear that asking for support will inspire pity. Allow the people who care about you to pitch in. Not only will you benefit, it will also make them feel better.

Consider talking to a mental health professional. Having someone to talk to about what you’re going through can make a huge difference. While loved ones can provide great support in this way, you may also want to consider talking to a therapist. The right therapist can help you process the changes you’re facing, work through your grief, and reframe your outlook in a more positive, realistic way.

A disability can take away many aspects of your identity, leaving you questioning who you are, what your value is, and where you fit in society. It’s easy to start feeling useless and empty, especially if you can’t do the same work or activities as you did before. That’s why it’s important to find new things that make you feel good about yourself—things that give you a renewed sense of meaning and purpose.

Volunteer. Volunteering is a great way to feel more productive and like you’re making a difference. And it’s something you can do even if you have limited mobility or can’t work. Pick a cause you’re passionate about and then figure out how you can get involved. There are numerous opportunities out there—many of which can even be done from home.

Develop new hobbies and activities that make you happy. A disability can make the activities you used to enjoy more difficult, or even impossible. But staying engaged will make a big difference in your mental health. Look for creative ways to participate differently in old favorites, or take this opportunity to develop new interests.

Find ways to give back to those who help you. When you’re disabled, you often must accept a lot of help from friends and family. While this is not a bad thing, it can still feel good when you find ways to reciprocate. For example, maybe you’re great with computers and can help a tech-challenged family member. Or maybe you’re a good listener your friends know they can count on when they need someone to talk to. Even things as small as a thank-you card or a genuine compliment count.

Take care of an animal. Caring for a pet is a great way to get outside of yourself and give you a sense of being needed. And while animals are no substitution for human connection, they can bring joy and companionship into your life and help you feel less isolated. If you aren’t able to have a pet, there are other ways to find animal companionship, including volunteering at your local animal shelter or veterinarian’s office.

In order to feel your best, it’s important to support and strengthen your health with regular exercise, a healthy diet, plenty of sleep, and effective stress management.

It’s important to get exercise in any way that you can. Not only is it good for your body— it’s essential for mental health . Regular exercise helps reduce anxiety and depression, relieve tension and stress, and improve sleep. And as you get more physically fit, you’ll also feel more confident and strong.

Start small and build from there. Don’t jump too quickly into a strenuous routine. You’re more likely to get injured or discouraged and discontinue. Instead, find ways to increase the amount of physical activity in your day in small, incremental steps.

Find creative ways to exercise. Instead of dwelling on the activities you can’t do, focus on finding those that are possible. Even if your mobility is limited , with a little creativity, you can find ways to exercise in most cases.

Listen to your body. Exercise should never hurt or make you feel lousy. Stop exercising immediately and call your doctor if you feel dizzy, short of breath, develop chest pain or pressure, break out in a cold sweat, or experience pain.

Don’t compare yourself to others (or to your past self). Avoid the trap of comparing your exercise efforts to those of others—even others with similar disabilities. And don’t discourage yourself by comparing where you are today to where you were pre-disability.

Eat well to optimize energy and vitality

Nutritious eating is important for everyone—and even more so when you’re battling physical limitations or health complications. Eating well will boost your energy and promote vitality so you can partake in the activities you want to and reach your goals. While eating healthy isn’t always easy when you’re struggling with a disability, even small changes can make a positive impact on your health.

Focus on how you feel after eating. You’ll start to notice that when you eat healthy, balanced meals, you feel more energetic and satisfied afterward. In contrast, when you opt for junk food or unhealthy options, you don’t feel as good. This awareness will help foster healthy new habits and tastes.

Get plenty of high-quality protein. Protein is essential to healing and immune system functioning. Focus on quality sources such as organic, grass-fed meat and dairy, fish, beans, nuts and seeds, tofu, and soy products.

Minimize sugar and refined carbs. You may crave sugary snacks, baked goods, or comfort foods such as pasta or French fries, but these “feel-good” foods quickly lead to a crash in mood and energy. Aim to cut out as much of these foods as possible.

Drink plenty of water. Your body performs best when it’s properly hydrated, yet many people don’t get the fluids they need. When you’re dehydrated, you simply don’t feel as good. Water also helps flush our systems of waste products and toxins.

Don’t underestimate the power of sleep

Quality sleep  is important for flushing out toxins and protecting your brain. Most adults need 7 to 9 hours. Establish a regular sleep schedule, create relaxing bedtime rituals such as taking a bath or doing some light stretches, and turn off all screens at least one hour before sleep.

Make stress management a priority

Stress is hard on the body and can make many symptoms worse, so it’s important to find ways to manage your stress, such as practicing relaxation techniques , carving out a healthy work-life balance, and learning healthier coping strategies.

More Information

• People with Disabilities - CDC resource with information on healthy living, safety, assistive technology, educational options, and more. (Centers for Disease Control and Prevention)
• How to Emotionally Cope with Having Disabilities - Packed with tips on how to cope with the difficulties that come with living with a disability, including dealing with insensitive comments, fighting stereotypes, and taking practical steps to make your life easier (wikiHow)
• CDC: 1 in 4 US adults live with a disability | CDC Online Newsroom | CDC . (n.d.). Retrieved February 5, 2022, from Link
• Chaput, J.-P., Dutil, C., & Sampasa-Kanyinga, H. (2018). Sleeping hours: What is the ideal number and how does age impact this? Nature and Science of Sleep , Volume 10, 421–430. Link
• Eating to boost energy—Harvard Health . (n.d.). Retrieved February 5, 2022, from Link
• Ratschen, E., Shoesmith, E., Shahab, L., Silva, K., Kale, D., Toner, P., Reeve, C., & Mills, D. S. (2020). Human-animal relationships and interactions during the Covid-19 lockdown phase in the UK: Investigating links with mental health and loneliness. PLOS ONE , 15(9), e0239397. Link
• Sharma, A., Madaan, V., & Petty, F. D. (2006). Exercise for Mental Health. The Primary Care Companion to The Journal of Clinical Psychiatry , 08(02), 106. Link
• Yeung, J. W. K., Zhang, Z., & Kim, T. Y. (2018). Volunteering and health benefits in general adults: Cumulative effects and forms. BMC Public Health , 18(1), 8. Link

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Essay on Disability

Students are often asked to write an essay on Disability in their schools and colleges. And if you’re also looking for the same, we have created 100-word, 250-word, and 500-word essays on the topic.

Let’s take a look…

100 Words Essay on Disability

Understanding disability.

Disability means having a condition that makes it tough to do certain things. Some people are born with disabilities, while others get them from accidents or illnesses. Disabilities can be seen, like when someone uses a wheelchair, or unseen, like trouble with learning or hearing.

Types of Disabilities

There are many kinds of disabilities. Physical ones affect the body, like trouble walking. Sensory disabilities impact senses, like being blind. Mental health and learning disabilities affect the mind, making learning or feeling good harder.

Living with Disability

People with disabilities can do many things. They go to school, work, and play sports. Sometimes they need tools or help to do these things. It’s important to treat everyone with respect and kindness, no matter what.

Support and Rights

Laws protect people with disabilities, giving them the same chances as others. Ramps, special software, and support in school are examples. These help make sure that everyone, regardless of ability, can join in all parts of life.

250 Words Essay on Disability

Disability is when a person has a condition that makes it more challenging for them to do certain things. This can be because of problems with their body or their mind. Just like everyone is different in their own way, disabilities are different too. Some people are born with disabilities, while others may get them because of an accident or illness.

There are many types of disabilities. Some people might have trouble seeing, hearing, or walking. Others might find it hard to learn or remember things. It’s important to know that just because someone has a disability, it doesn’t mean they can’t live a full and happy life. They can still play, learn, and work; they might just do these things in a different way.

People with disabilities use tools and help from others to make their lives easier. For example, someone who can’t see well might use a cane or a guide dog to walk around. There are also special computers and programs that help people with different kinds of disabilities to study or do jobs.

Being Kind and Respectful

It’s very important to be kind and respectful to everyone, including people with disabilities. They should be treated just like anyone else. You can be a good friend by understanding their needs and helping them when they ask for it. Remember, having a disability doesn’t stop someone from being a great friend, artist, scientist, or anything else they want to be!

500 Words Essay on Disability

When we talk about disability, we mean a condition that makes it hard for a person to do certain things. This could be because their body or mind works differently from what most people consider usual. Disabilities can be seen, like someone in a wheelchair, or unseen, like someone who has trouble learning.

Disabilities come in many forms. Some people are born with them, while others might get a disability because of an accident or illness. Physical disabilities affect the body, making it tough to walk, see, hear, or move around. Mental disabilities can make learning, communicating, or handling emotions challenging.

Life with a Disability

Living with a disability means facing challenges that others might not think about. Simple things like climbing stairs, reading a book, or remembering directions can be hard. But it’s important to know that having a disability doesn’t stop someone from living a full and happy life. People with disabilities go to school, work, play sports, and enjoy time with friends and family just like anyone else.

Accessibility and Support

To help people with disabilities, we need to make places more accessible. This means creating ramps for wheelchairs, having books in Braille for those who can’t see, and using sign language for those who can’t hear. Support also comes from friends, family, and helpers who give their time and love to make sure everyone can join in.

Respect and Understanding

Sometimes, people don’t understand what it’s like to have a disability, and they might act in a way that is not kind. It’s very important to treat everyone with respect, no matter how they look or what they can or can’t do. By learning about disabilities, we can be better friends and help make sure everyone feels included.

Technology and Disabilities

Technology has done a lot to help people with disabilities. There are computers that speak for those who can’t talk, wheelchairs that can climb stairs, and apps that help people who have trouble with learning. These tools open up a world of possibilities and help break down barriers.

The Power of Positivity

Having a disability might make some things tougher, but it can also teach us about strength and courage. Many people with disabilities have done amazing things and have shown that it’s not the disability that defines them, but their talents and personality. With a positive attitude, anyone can overcome challenges and reach their goals.

Disability is part of the human experience, and it touches all of us in one way or another. By learning about it and creating a world that is good for everyone, we build a kinder, more understanding society. Remember, it’s not our differences that matter, but how we treat each other. With care and support, we can all help make life better for people living with disabilities.

That’s it! I hope the essay helped you.

If you’re looking for more, here are essays on other interesting topics:

• Essay on Cancer Treatment
• Essay on Dignity And Worth Of A Person
• Essay on Digital World

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The Dignity of Disabled Lives

The burden of being perceived as different persists. The solution to this problem is community.

By Andrew Solomon

Mr. Solomon is a professor of clinical psychology at Columbia University and the author of “ Far From the Tree ,” which has been made into a documentary film .

This essay is adapted from the author’s foreword to the new book “ About Us: Essays From The New York Times Disability Series .”

The eugenic movement spearheaded by Francis Galton in England in the late Victorian period reached a culmination in the view that if you got rid of the misfits, you could breed a pure, advantaged race. The reach of the movement was reflected in the American campaigns to sterilize disabled people, supported in a 1927 Supreme Court decision in which Oliver Wendell Holmes wrote, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough.”

Drawing on these sources, Hitler began his campaigns of genocide by gassing the disabled, presuming not only that they were polluting the larger population, but also that they were a group no one would miss. Genetic determinism presumed that the weak and disadvantaged passed along their weakness and disadvantage, and that a systematic campaign of eliminating all but the best and strongest could improve the lot of humanity.

There are two entwined arguments here, one about who makes disabled children, and the other about the worth of the lives of those disabled children. What sort of parents have children with disabilities? Every sort of parent. Nondisabled parents produce disabled children with startling regularity — and disabled people produce nondisabled children time and again. So that part of the argument is specious, at least when applied so specifically as Galton, Holmes and Hitler contemplated. More relevant to us today is the modern argument that whether disability is passed along generationally or not, it has inherent worth, and the loss of it from our society would be a troubling depletion of human diversity. That is a more radical, philosophical challenge.

Disabled lives are lives, and are charged with inherent dignity. Most people with disabilities don’t wish they had never been born; most people with disabilities contribute to the world they inhabit; most people with disabilities both give more to and get more from life than their nondisabled peers may be inclined to guess. Some have rich lives despite their disability, but others would say they have rich lives at least in part because of their disability.

In 1968, the ethicist Joseph Fletcher wrote in The Atlantic Monthly, that esteemed journal of liberal thought, that there was “no reason to feel guilty about putting a Down’s syndrome baby away, whether it’s ‘put away’ in the sense of hidden in a sanatorium or in a more responsible lethal sense. It is sad, yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down’s is not a person.”

A lot of ink has been spilled covering our society’s gradual embrace of women’s rights, then racial rights, and most recently, gay rights. The shift in attitudes toward disability has been nearly as powerful, if less complete, but it has been much quieter. Today, no one would publish an article in the mainstream media that championed dehumanizing a group of disabled people as Joseph Fletcher did. What was once par for the course has become unthinkable.

Though utilitarian philosophers such as Peter Singer have proposed that parents should have the right to murder their disabled newborns, these views are deliberately polemical, widely protested and abhorrent to most people who encounter them. We have learned to value most people, and with that social advancement has come progress in improving their lives. Acceptance is protection. People with Down syndrome live nearly twice as long as they did in 1968, and many hold down jobs; some are writers or actors or models; some live at least semi-independently. That progress reflects an opening up of a society that no longer experiences the birth of a disabled child as an unmitigated tragedy, that no longer assigns chronic sorrow to the parents.

This more accepting and celebratory point of view has some ascendancy in the United States, but is a work in progress both here and globally; what constitutes an identity in one society or family may be a disability in another. The sociologist Ashton Applewhite quoted a matador who said, “The bull looks different when you’re inside the ring.” Disability is very different for disabled people than it looks to nondisabled people. What we wouldn’t have opted into is not the same as what we’d now like to change.

It’s hard to remember how strong the arguments were that women were lesser than men, that black people were lesser than white people, that gayness was a crime, a sin, and a disease in search of a cure. It can be hard to realize how many people still make these arguments, how many hated living under the authority of an African-American president and how many abhor the idea of a female president, how many would deny basic services to gay and trans people, how many regard the disabled with polite disdain.

Our society is rife with glass ceilings, and the disability ceiling has the fewest cracks in it. When I attended the 2018 annual convention of The Arc, the country’s largest and oldest organization for people with intellectual and developmental disabilities, I was struck by how seldom we see in common life what I saw there: the meeting of disabled and nondisabled people as equals.

Increasingly, decisions about what kind of child to have are made prenatally, either through preimplantation genetic diagnosis or through amniocentesis. An image of disability is set at the birth of a newborn child. But predictions about any individual life are always hypothetical and often wrong. In interviewing hundreds of parents of children with disabilities, I found a recurring theme of indignation from parents whose children had achieved much more — or much less — than doctors had anticipated. A baby, disabled or not, is a cipher, and only time will show how and what he or she will do.

Doctors who deliver prognostications are usually representing averages. On average, certain conditions bestow certain degrees of disability, but brains and bodies are highly adaptive, and the skills of an individual child can surprise everyone. It is a tough call for doctors. Creating an atmosphere of false hope can be catastrophic; it sets families up for renewed despair with every milestone their child misses. But presuming the worst often results in the worst results; low expectations can be a self-fulfilling prophecy. A tempered realism about the vagaries and uncertainties often obtains the best result, but parents crave assurances and doctors too often indulge that inclination.

The mother of a man with diastrophic dwarfism, a very disabling condition, described to me how for the first year of her son’s life, every doctor she saw rattled off a catalog of what was likely to go wrong and asked her if she was prepared to deal with it all. When her son was a year old, a doctor who specialized in skeletal dysplasias lifted the baby up, held him aloft in the light, and said, “Let me tell you. That’s going to be a handsome young man one day.” The rewarding life she was to have with her son began that very day, a fact she reflected on when we chatted at his joyous wedding years later.

The expectations with which a child is raised may have a strongly determining effect on what that child can do. Parents must hope for the best, but also believe that life will have meaning even with a child who achieves limited functioning. The process of forging meaning does wonders for both parents and child. A recent study looked at children with various complications at birth and found, simply, “The children of mothers who had tried harder to find meaning had a better developmental outcome.” How we frame disability determines how we live it, and if it is defined as calamitous from the start, the job of finding meaning is steeper than it need be. The fact that you wouldn’t have chosen something doesn’t mean that you can’t find joyful meaning in it.

Every condition manifests in a mix of inherent challenges, access challenges, and social challenges. Many people with achondroplasia (the most common form of dwarfism) have spinal compression and need surgery for it. We can fix social attitudes toward people with dwarfism all we want, and spinal decompression procedures will neither be obviated nor become pleasant. They are an inherent challenge of the condition. Challenges of access are amply addressed by the Americans With Disabilities Act and we recognize the need for accommodations to address them, but though things are much better than they were on this front, problems persist. So, someone with achondroplasia may be unable to reach the cereal at the local supermarket. The solution to this problem is not to make the LP (little person) taller, but to build grocery stores with lower shelving — or at least to give customers some tools or assistance that allow them to retrieve what they want to put in their cart. Because achondroplasia is a relatively infrequent disability, there are no standards for addressing high grocery shelves. That is a challenge of access.

The social challenges are the most pernicious. It is tough for dwarfs that people stare at them and try to make iPhone videos of them when they are quietly leading their regular lives. People try to joke with them; they say derogatory things in plain earshot. They plan parties at which dwarfs are the extraordinary entertainment. There is no escape from the intrusive exoticizing. These social problems of intractable rudeness are obdurate. An intellectually disabled person may not be able to parse difficult texts at the library; a physically disabled person may not be able to get up the front steps to that same library; someone with a speech impediment may be dealt with patronizingly there. We can’t make good policy unless we acknowledge that all three challenges — inherent, access, and social — are almost always in play.

Negative views of disability are deeply rooted in tradition. The evil of Shakespeare’s Richard III was inseparable from his hunchback. The disabled body was morally suspect. In “Henry VI, Part 3,” Gloucester (who would become Richard III) says bitterly, “Since the heavens have shaped my body so, / Let hell make crooked my mind to answer it.” Disability was an invitation to degenerate behavior. He goes on, “And this word ‘love,’ which graybeards call divine, / Be resident in men like one another / And not in me: I am myself alone.”

To be found grotesque is often to become grotesque; we fit other people’s perceptions of us and grow into what they see. Forced into isolation by a deformity, the disabled man is infected with rancor that has no other occasion. Though we’ve disavowed Shakespeare’s association between deformity and evil, the burden of being perceived as different persists, and it can generate isolation and rage. The best solution to this problem is community .

That there are now widely read platforms such as this one, in which people with disabilities tell our own stories, points to the new ways communities are being built and acknowledged; and those who read them may find redemptive community in these words. This is not to say that if Richard III had belonged to a chat group of other hunchbacks he would have been a cheerful fellow, but only to comment that unmitigated outsiderness has always been poisonous and remains so.

Disabled lives are as valid as nondisabled lives, but they are not the same. This quest to assert equality without making false claims of equivalence echoes the quest of the women’s movement, the civil rights movement, and the gay rights movement.

Isolationism is a national policy of separating your country from dependence on others, and I believe it has been overplayed of late. It has its human equivalent in the elevation of personal independence: independence of children from parents, of parents from extended family, of extended family from the society around them. We admire the ability of people to stand on their own two feet and to function without reliance on social supports. Pundits disparage those who depend on public funding. But where has this modern, Western value originated?

Independence is not so brave a value as we often insist, and it is also almost impossible; we live in a collective fabric, all our lives entwined with the lives of others. Human beings are social animals. Disabled people are often dependent on other people, and in our lionization of self-sufficiency, we see that as a weakness. But dependency has its own particular poetry. It is a fundamental aspect of intimacy, a defining quality of love.

When I first came across inclusion and mainstreaming as educational strategies, I thought they must be lovely for the disabled people whose position was advanced. But I thought it might be tough on the nondisabled people, whose progress would inevitably be slowed down by the accommodations that their disabled classmates required. Now, having been in many such classrooms, I can say that the primary advantage redounds to the nondisabled children, who grow up less afraid of difference than they would otherwise be, more receptive to the intense humanity of their fellow students. They do not think that independence is success and dependence is failure. This can allow them more willing to acknowledge their own dependence, to tolerate their own vulnerability.

Until Jason Kingsley, who has Down syndrome, began appearing on “Sesame Street” in the 1970s, there had been almost no disabled children publicly visible since the Victorian era, when the disabled were often sentimentalized and gathered at the family hearth. In the 20th century, people whose children were disabled tended to hide them, seldom taking them into the market squares or shopping malls or restaurants or theaters where human beings come into contact with strangers. They were squirreled away at home or ferried to institutions, an exhausting embarrassment.

Now, disabled people are more visible than ever. We live in a time of great social progress, when that visibility has been achieved — but we also live in a time of great medical progress, and at the same time that many forms of disability are being acknowledged as identities, they are becoming subject to cure. I believe in social progress and I believe in medical progress, but it would be tremendous for them to be more awake to each other. Disability may coexist with shocking ability; indeed, the shocking ability may rise in part from the depth of consciousness required of people who are disabled and who have to figure out an often bewildering world through their particular consciousness. To imagine, and I use the most obvious example, Stephen Hawking without disability is to imagine someone else entirely.

I come to this movement for rights through my struggle with depression, a mental illness that can earn you disability stripes. Depression’s up side is substantial; I’ve learned a lot from my depression. If I had my life to do over, however, I’d wish it away. I pray that it never afflicts my children. I also belong, as we all do, to myriad other minorities. If I imagine myself without dyslexia, without A.D.D., without depression, without gayness, without nearsightedness, without orthostatic hypotension, without Jewishness, without white privilege, without prosopagnosia, then there’s very little of me left. We are mostly an accumulation of strengths and weaknesses, of pathologized and nonpathologized conditions and identities.

My grandmother used to say, “Everybody’s got something.” Our work is to seek for meaning in who we are rather than in who we might have wished to be. It may be easier in the United States as it’s currently constructed to be white than it is to be of color, but most people of color do not spend their time wishing they had pale skin and golden hair. Women may know that men have more privilege, but women don’t in general experience that difference as one they would address by switching gender. We are our authentic selves, striving for justice, and the rest is commentary.

Andrew Solomon ( @Andrew_Solomon ) is a professor of medical clinical psychology at Columbia University Medical Center, and the author of “ Far From the Tree ,” which has been made into a documentary film , and of “ The Noonday Demon ” and “ Far and Away .”

This essay is adapted from the author’s foreword to the new book “ About Us: Essays From The New York Times Disability Series ,” edited by Peter Catapano and Rosemarie Garland-Thomson.

The Times is committed to publishing a diversity of letters to the editor. We’d like to hear what you think about this or any of our articles. Here are some tips . And here’s our email: [email protected] .

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My Joy Is My Freedom

On the revolutionary act of choosing happiness as a Black, disabled woman.

Embracing my own joy now means that I didn’t always. Hope is my favorite word, but I didn’t always have it. Unfortunately, we live in a society that assumes joy is impossible for disabled people, associating disability only with sadness and shame. So my joy—the joy of professional and personal wins, of pop culture and books, of expressing platonic love out loud—is revolutionary in a body like mine. I say this without hyperbole, though fully aware that the thought may confuse, frighten, or anger people. As a Black woman with cerebral palsy, I know what it is like to encounter all three.

The face of the disability community is very white. People don’t often think of people of color or of LGBTQ+ people when they think of us. Instead, they think of cis white male wheelchair users who hate themselves, because that is so often the way pop culture depicts us. I’m not a cis heterosexual white male wheelchair user, so in pop culture, I don’t exist. That’s not okay because it’s not reality. I exist, I am a real person behind these words, and I deserve to be seen.

.css-1aear8u:before{margin:0 auto 0.9375rem;width:34px;height:25px;content:'';display:block;background-repeat:no-repeat;}.loaded .css-1aear8u:before{background-image:url(/_assets/design-tokens/elle/static/images/quote.fddce92.svg);} .css-1bvxk2j{font-family:SaolDisplay,SaolDisplay-fallback,SaolDisplay-roboto,SaolDisplay-local,Georgia,Times,serif;font-size:1.625rem;font-weight:normal;line-height:1.2;margin:0rem;margin-bottom:0.3125rem;}@media(max-width: 48rem){.css-1bvxk2j{font-size:2.125rem;line-height:1.1;}}@media(min-width: 40.625rem){.css-1bvxk2j{font-size:2.125rem;line-height:1.2;}}@media(min-width: 64rem){.css-1bvxk2j{font-size:2.25rem;line-height:1.1;}}@media(min-width: 73.75rem){.css-1bvxk2j{font-size:2.375rem;line-height:1.2;}}.css-1bvxk2j b,.css-1bvxk2j strong{font-family:inherit;font-weight:bold;}.css-1bvxk2j em,.css-1bvxk2j i{font-style:italic;font-family:inherit;}.css-1bvxk2j i,.css-1bvxk2j em{font-style:italic;} "I live as unapologetically as I can each day—for myself, of course, but also for those…who will walk through the doors I hope to break down."

When I created #DisabledAndCute in 2017, I did so to capture a moment, a moment of trust in myself to keep choosing joy every single day. The hashtag was for me, first, and for my Black disabled joy. I wanted to celebrate how I finally felt that, in this Black and disabled body, I, too, deserved joy. The hashtag went viral and then global by the end of week two. When disabled people took to it to share their stories and journeys, I was floored and honored. There were naysayers who hated that I used the word cute and accused me of making inspiration porn, but the good responses outweighed the bad. So I live as unapologetically as I can each day—for myself, of course, but also for those who will come up after me, who will walk through the doors I hope to break down.

Living unapologetically looks like retweeting praise for my work or my book on Twitter. Calling out ableism, racism, and homophobia in marginalized communities through my writing. It means that I’ve literally stopped apologizing for the space I take up on stages or in airports—especially in airports, since I use their wheelchairs to get from gate to gate to avoid body pain—or anywhere else I exist. I’ve stopped saying sorry to the people around me as the airport attendant pushes me to my gate. I feel liberated.

I may not find joy every day. Some days will just be hard, and I will simply exist, and that’s okay, too. No one should have to be happy all the time—no one can be, with the ways in which life throws curveballs at us. On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life. When that doesn’t work, we can remind ourselves that the absence of joy isn’t permanent; it’s just the way life works sometimes. The reality of disability and joy means accepting that not every day is good but every day has openings for small pockets of joy. On the days I can’t get out of bed because my body pain is too great (a reality of my cerebral palsy), I write in the notes app on my phone or spend the day reading books or watching romantic comedies on the Hallmark Channel. These days and others that I carve out for self-care are necessary for my well-being.

Disability Visibility: First-Person Stories from the Twenty-First Century

For most of my life, hope, like joy, seemed to elude me—it felt impossible in a body like mine. I was once a very self-deprecating and angry person who scoffed at the idea of happiness and believed that I would die before I ever saw a day where I felt excited at the prospect of being alive. I realized I was wrong on a snowy day in 2016 just after Christmas, when I vowed to try to hold on to and nurture the feeling of joy, even if skeptically. I championed the act of effort and patience with myself by forcing myself to reroute negative thoughts with positive ones. Instead of saying what I hated about myself, I spoke aloud what I liked about myself.

In doing this, hope and joy became precious, sacred, a singular and collective journey. I shared my journey with the people who loved me before I ever thought I could. I shared my journey with the world because I wanted them all to know that who I am becoming is only possible because of who I was, and that is what makes it so beautiful. My joy is my freedom—it allows me to live my life as I see fit. I won’t leave this earth without the world knowing that I chose to live a life that made me happy, made me think, made me whole. I won’t leave this earth without the world knowing that I chose to live.

From Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong, to be published on June 30, 2020 by Vintage Books, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. Compilation copyright (c) 2019 by Alice Wong.

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• Health and social care
• Disabled people

Exploring the everyday lives of disabled people

• Disability Unit

Updated 20 September 2021

© Crown copyright 2021

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This publication is available at https://www.gov.uk/government/publications/exploring-the-everyday-lives-of-disabled-people/exploring-the-everyday-lives-of-disabled-people

Executive summary

The objective of this research was to gain deep insight into the lived experiences of disabled people, rather than to provide a representative picture.

Lived experience refers to knowledge acquired through direct, first hand and personal experience. This is essential with regard to disabled people as the variety of impairments makes assumptions about them problematic.

The aims of the research were to:

• inform cross-cutting policy development and policy announcements
• enable policies developed for disabled people reflecting their lived experiences
• help inform the government how to better integrate departmental policies and services

This research was conducted prior to the COVID-19 pandemic and a follow up to this project looks at the effects of COVID-19 on disabled people’s everyday lives.

Research contributors: Policy Lab , Rachel Bruce, Vanessa Lefton, Dr. Marc Verlot Editors: Dr. Armineh Soorenian and Dr. Jason Olsen

Chapter summaries and main findings

Chapter 1 focuses on the barriers that participants faced in terms of feeling valued and having a sense of self-worth. Maintaining independence was fundamental to participants, yet they experienced boredom, inflexible working systems, and a host of other barriers. It was difficult for the participants to find meaning and purpose in their lives, specifically those who had been declared ‘unfit’ for work, were isolated, or were excluded from opportunities to socialise, have hobbies, or enter public spaces. Traditional work environments excluded some participants who had specific physical needs, for example they found full-time employment inflexible. Prevailing ideas about what is recognised as valuable work is also shown in our report to limit participants’ expectations of themselves, and their career ambitions.

Chapter 2 looks at participants’ ‘disabled’ identities and covers issues such as labelling, stigma, risks associated with social exclusion and hostility as well as perceptions of self-worth. Participants faced additional societal barriers which they felt excluded them from having a ‘meaningful’ life, at least as far as personal and societal expectations were concerned. This resulted in feelings of shame about not living up to normative ideals of what constituted a good life. Moreover, support services often reinforced feelings of inadequacy by focusing on what participants were not able to do, lowering their own internal expectations further.

Chapter 3 examines participants’ experiences of receiving and living with a diagnosis. The research found that any difficulties associated with diagnosis and personal identity were compounded by factors such as the length of time taken to receive a diagnosis, the age at which participants were diagnosed, as well as the attitudes of family and friends following diagnosis. Receiving treatment for health conditions can resolve certain problems for people, but it can also create new ones. Almost half of our participants had received treatment which had gone wrong or triggered further medical complications. Participants also described spending much of their lives waiting, for example for medical appointments, medical transport and regular visits from professionals.

Chapter 4 focuses on participants’ experience when using the benefits system, including their fears of cuts and changes to support, and difficulties surrounding assessment and reassessment. Applying for state support can be a confusing and difficult process which many of our participants began at moments of increased vulnerability. They did not all feel they received the support or clarity needed.

Chapter 5 explores the ability of participants to access and manage formal support. Monitoring and tracking paperwork, chasing up processes, and holding social and medical experts to account were key requirements in being able to access and maintain support, and participants did not feel their time was valued. Formal support models undervalued the importance of social time for the participants. Reduction in participants’ social support further isolated them and they were unable to leave home. Participants who used Direct Payment (DP) to pay and manage their support felt there was no training for them as employers, or recognition of the skills needed to work in this way.

Chapter 6 concentrates on participants’ family relationships and friendships. Many experienced loneliness as a result of barriers to social inclusion and the fact that they were physically isolated in their homes. Loneliness was also exacerbated by empty time, such as not having activities to keep them occupied, and could intensify the isolation. For some, loneliness was pervasive and stemmed from the sense of stigma attached to being disabled.

Chapter 7 covers a range of issues relating to participants’ living spaces. There was a lack of suitable housing available to meet people’s needs. This had negative repercussions in terms of mental health, as people were often forced to live somewhere inaccessible and unsuitable. Accessing appropriate housing adaptations, and the ability to live in a suitable location, were also key factors for wellbeing.

Chapter 8 explores issues affecting the participants when going outdoors. The availability of transport, the accessibility of public spaces, and the attitudes of the general public all presented significant challenges. Non-disabled people often reinforced the physical barriers preventing entry or access to places, because of a lack of knowledge about needs, a reluctance to make necessary adaptations, and even attitudes and actions of hostility and aggression.

Research methods

We recruited 12 participants, some via a research recruitment agency, and others via local charities. We selected participants who did not have regular voluntary, professional or academic experience in promoting disability rights. The aim was to reach people who might not usually make their voices heard in public. We deliberately chose participants to include a range of life experiences.

The participants reflected a broad mix of ages, impairments, social and ethnic backgrounds, living situations and locations:

• their ages ranged from 26 to 70 years
• 3 were from ethnic minority groups
• 7 were women and 5 were men
• 2 lived with their children and one lived with their parents
• 2 were married and lived with their spouses (included in the table of participants in brackets)
• 4 lived in some form of supported housing
• 5 had invisible conditions and 7 had visible ones

Table of participants

In June and July 2019, we used timeline interviewing and diaries to gather initial insights into lived experience. We kept the focus of the interviews broad, to explore the issues that mattered most to disabled people. Once we had carried out this first-look fieldwork, from June to September 2019, we analysed our findings into recurrent themes which were used to centre the film ethnography on:

• relationships and society
• the environment

We spent around 70 hours with 12 people (ranging from 3 to 8 hours each) in locations across the UK. We listened to participants, including when they were at home, out at the shops, at their place of work, or in other places they visited regularly. Finally, we went through a process of grounded thematic analysis. Examples used in this report come from the body of evidence and were chosen because they best represented the themes identified from the analysis.

Cross cutting themes

In addition to the key topics, we identified a number of cross cutting themes:

Waiting and time

Participants spent a lot of time waiting. This included waiting for diagnosis and appointments, for treatments to become available, for accessible medical transport to be available, and the recovery time after treatment. They were also expected to wait for responses after interacting with the state system for various benefits. Participants felt this devalued and wasted their time.

Impact of public perceptions

Personal and organisational prejudice was strongly felt by participants and affected their confidence and sense of self-worth.

Isolation and loneliness

Participants experienced loneliness and social isolation. Small acts of negligence in care were experienced as dehumanising and exacerbated feelings of loneliness.

Independence and dependency

Dependency on other people and formal support limited opportunity to work, retain meaning and purpose, and a sense of privacy, choice, control and spontaneity in every area of their lives.

Lack of support

Participants experienced a sense of anxiety and fear around losing existing support, and built a distrust in the intentions of local authorities and assessment processes. Participants strongly disliked being asked to demonstrate what they could not do when being assessed for their needs.

Chapter 1: Barriers to feeling valued

Key findings.

• the current delivery of formal and informal care can lead to increased dependency, wasting the skills and capabilities of disabled people and eroding their sense of self-worth
• there is a lack of social provision for disabled people who are of working age, in terms of accessing support and social opportunities
• there is often little employer awareness of non-traditional, flexible and inclusive ways of working
• the traditional non-flexible work environment can undervalue and exclude disabled people’s skills and contributions

Introduction

Participants said that feeling valued was key to their sense of identity. They discussed a range of attitudinal and physical barriers that hindered or prevented their positive feelings of self-worth.

Maintaining independence

Whilst support from the government, family and friends is vital for many disabled people, it can also induce dependency and erode a person’s sense of self-worth. Jessica and Simon, for example, were keen to carry out their household chores themselves, but care workers often did the jobs for them, as they could do so at speed. For Jessica, doing work around the house was important, even if it took her longer, because she wanted to maintain her independence. Jessica and Simon, who are married, explained: “We understand when social services say: ‘It would be a lot quicker to get someone in to do it.’ We get that. But we don’t want it done for us, we want to take part.”

Similarly, Joyce said that her friends, family and carers would regularly jump to her aid to help with everyday tasks, but that this eroded her sense of capability. Joyce found the process frustrating, since she fiercely held onto the moments of independence she still had. She said: “It’s hard to accept I can’t live a full life, as you can’t capture that freedom. And sometimes it’s such a trip-up, as I see myself as perfectly able, and something happens that shows that I’m really not.” Shawn was also keen to do as much as he could. Even though he had health conditions that caused him a great deal of discomfort, he enjoyed gardening and would try to go to the shops when he felt well enough.

Alan took great pride in the work he had carried out on his house, modifying and extending it. He and his wife had lived there for over 35 years, but he was no longer able to do this type of work. Alan had always enjoyed doing things for other people, and liked that people used to depend on him for help. It was a great source of distress to him that roles had reversed, and he had come to a point where he needed to ask others for help.

Participants discussed the fact that it was not just dependency on others that could cause distress. Jessica, for example, relied on state support, and felt she was significantly constrained by the conditions attached to receiving that help. This included feeling that she could not use her university degree to gain work, which was upsetting for Jessica as she had become bored and felt underutilised.

Inaccessibility of public spaces meant that participants often experienced long periods of time with little to do. Alan reflected: “This is how bored you get. You can be surprised by how the day can go past.”

Participants communicated that whilst there are local services and activities on offer, they tend to target young people or older people, leaving other people with very few appropriate and stimulating options. Jessica and Simon asked: “What is there for us to do?” They described how they were invited to lunchtime clubs for the over 65s, but that they felt they would be better placed to run those groups rather than participate in the activities. They said they fell into an “age-gap black hole” that was not being catered for. Jessica and Simon said they were effectively stuck at home, with no outlet for their skills and no people their own age to connect with, other than their carers.

However, Joyce and her husband Clive had a contrasting experience. They regularly visited a palliative care centre near where they lived. At the centre, they were able to have tea, take part in activities and have massages and other natural treatments. Despite their initial reservations, Joyce and Clive enjoyed their time there, as it was “not just for old people, and a lovely environment”.

Participants said they often found activities and hobbies to keep themselves busy. For example, Jessica was learning sign language, Tony was a part-time radio DJ, and Efstathia wrote short stories. However, some participants felt that they were artificially filling their time rather than meaningfully contributing to society, as they wanted to do.

Some working environments can be physically exclusionary. However, participants spoke about the difference that adjustments could make in terms of their ability to contribute. Diane worked in a flexible and adapted environment. She worked for a disability charity, enjoyed her job, and had gradually taken on more responsibility within her role, performing inclusion and advocacy work for disabled people. In contrast, Alan had not been able to maintain his work due to a lack of adjustments to allow him to continue in employment and Shawn reported similar experiences. This was clearly a source of distress for both of them. Tony shared some attitudinal barriers he had encountered in applying for work: “I went for a job interview a couple of years back and the interviewer was asking the carer the questions, not me.”

Normative notions of work also appeared to affect people’s expectations and ambitions for themselves. Jessica explained that she would be unable to spend a 35 hour week in an office, but that she wanted desperately to be doing some kind of work. She felt that her talents were being wasted. Similarly, Armaan had always believed that he would not be able to work in an office, and so 16 years previously had decided to become a maths tutor. His career choice had been led by his impairment rather than his desires and preferences. He would have liked to have taken a different career pathway, and felt unfulfilled in his role as a tutor.

While some participants were optimistic about their future, others found it a source of concern. They felt they were not able to plan ahead for independent lives like their non-disabled peers. For Alan, making sure that his wife would be taken care of after his death was important, given that he felt he would pass away before her, due to reduced life expectancy following a transplant in 2006. They have been together all their adult lives, and he wanted to make sure that she is financially secure.

Armaan wanted to live independently, to have a family, and to look after his ageing parents, but for him this was “inconceivable”. He said: “It’s something that’s on my mind all the time.” He felt that his hopes and dreams were outside the realm of possibility.

For participants, maintaining their independence, boredom, inflexible working systems, and fears for their future were key challenges they faced in terms of feeling valued and having a sense of self-worth. Participants who had specific impairment needs found the inflexible full time work environments inaccessible, lowering their career ambitions.

Policy makers are invited to reflect on the following questions:

• how can we develop public services and policies which protect a person’s sense of independence while offering support where needed so that they can have opportunities to partake in activities, work and relationships which are considered socially valuable?
• how can we ensure that disabled people are able to spend their time engaged in meaningful activity, so that society does not waste their skills and talents?
• what can we offer working-age disabled people, who are not included in social provision targeted at young people or the elderly?
• how can we provide the right level of support to both disabled people and employers to make workplaces more inclusive?

Chapter 2: Identity

• labels, services, systems and treatment can focus on problems, challenges and the negative aspects of being disabled – this means that an outlook focussing on aspirations and making things happen can feel at odds with the way public services treat disabled people
• invisible impairments become something that people feel they need to conceal or manage privately – this can reinforce self-stigma surrounding disability identity
• disabled people can be vulnerable to physical or verbal abuse, which can be hard to recognise or investigate – if the person has difficulties communicating with others this can decrease the likelihood of identifying these issues

Participants discussed how they felt about and experienced their identity as a ‘disabled’ person. They agreed that relating to this identity could lead to complex situations that were difficult to navigate.

Participants described ‘disability’ as a negative label. Avinash noted that disability started with the prefix ‘dis’ and therefore immediately implied something was lacking.

Some participants struggled to reconcile knowing their own value with the ‘disabled’ label given to them by society. They described how it could be challenging to feel positive in the face of such a negatively framed description. Diane found ‘disability’ reductive and preferred to label herself by naming her specific condition, or better yet, using her name, Diane.

In Jessica’s view, labels like ‘disabled’ did not serve the disabled person living with the condition. She said clearly: “Labels aren’t for me.” Rather, Jessica saw labels as something used by the non-disabled world to make sense of disabled people. She further commented that it was rare for disabled people to ask each other what their disability was.

While several participants disliked the term ‘disability’, others saw it as helpful in establishing recognition from others. Armaan’s parents did not recognise him as ‘disabled’, mainly owing to the invisibility of his impairment and lack of a diagnosis, despite the significant impact his condition has had on his daily life. He also felt that his acquaintances and friends did not understand the physical pain he experienced. For Armaan, not being given this acknowledgment in close relationships made him doubt himself and his experiences.

This issue specifically affected participants with non-visible conditions, who wanted to be recognised as ‘disabled’ in order to be better understood by others. Kathryn was frustrated that her mental health issues were hidden and thus not recognised or acknowledged. She believed that if her impairment was visible, she would have felt safer socially and been better accommodated for.

Despite having to be formally recognised as ‘disabled’ to receive appropriate support and reasonable adjustments, participants with invisible impairments said they were sometimes reluctant to disclose their impairments or health conditions. This uncertainty and conflicting decision was often a result of negative experiences, associations and stereotypes about disabled people.

Participants discussed the ways in which they kept their impairments and health conditions hidden. Avinash feared people would not understand him and would treat him differently. Much of his fear stemmed from his family’s reaction to his diagnosis, creating a worry that everyone would react in a similar way. As a result, Avinash deliberately concealed his impairment from his friends and relied solely on his girlfriend for support. Shawn said he felt embarrassed when he showed signs of his health condition in public, and he often disguised his need to catch his breath by stopping to look in shop windows. Diane also concealed her impairment from others, especially when dating, for fear she would be seen as unattractive.

Kathryn felt that she had been misunderstood for years by health professionals and family members, given that there were no physical signs of the mental health issues that she lived with. Kathryn talked about society’s negative view of her condition: “I don’t want to say I’ve got a mental illness. I feel people look down on that kind of thing. It’s, again, an attitude of ‘pull yourself together’. It is a mental illness, I guess. I don’t really like to label it, but it is what it is.”

Social exclusion and hostility

Fear of disclosing a disability may, in part, stem from the way in which people with visible impairments are treated. Participants with visible physical impairments had experienced apathy, exclusion, and even hostility.

Participants reported that they were often misunderstood or treated differently, or seen as an inconvenience. This led to a feeling of being unwelcome in social spaces. Tony had regularly experienced apathy from bus drivers who did not bother to put out the wheelchair ramp for him so he could board the bus. As a result, Tony felt like a burden to fellow passengers.

Latanya felt conspicuous in public and noticed that people appeared to dislike her distinctive way of walking because of her visual impairment. Therefore, Latanya did not like using her white cane and tended to minimise her physical use of space. Diane described the mental toll of having had people, particularly children, stare at her.

Several participants had experienced outward hostility from members of the public, who often showed a lack of understanding and disability awareness, such as receiving abuse for taking up space on the pavements while using mobility aids. Roxanna described her tendency to stay indoors at night, for fear of drunken abuse from others targeting her based on her impairments.

Perceptions of self-worth

Despite obstacles that were beyond their control, participants felt judged for “failing” to carry out socially valued roles, which in turn caused feelings of embarrassment and shame. Armaan recalled feeling ashamed when his friends asked why he still lived with his parents, despite the fact that he had been unable to find a job that could accommodate his needs, and this prevented him from receiving a stable enough income to live independently. Joyce talked about the prejudice she had experienced from the general public: “They say: ‘Ahhh, you’re just a benefits claimant. You’re not worth anything, you do nothing all day’, and it makes you feel unworthy. In the end you can start believing it.” Similarly, Shawn noted: “I feel embarrassed sometimes being disabled. I think people look at you differently when you’re disabled.” He stated that he even felt self-conscious when going to the shops.

Jessica, Joyce, Shawn and Simon all faced additional challenges which prevented them from taking part in paid employment. Different barriers meant that Armaan was not able to care for his parents, and Alan could not look after his partner. They all saw these roles as being socially valued. Despite their additional difficulties, some participants blamed themselves for failing to fulfill these expected roles and responsibilities. They stated that they felt that others judged them for not meeting these societal standards as well. As a result, some felt a sense of personal inadequacy.

Jessica explained that assessments, services and care provision reinforced these senses of inadequacy by focusing on what disabled people could not do. Diane described how patronising it could be when people celebrated her carrying out everyday tasks, like going to work or being “out and about”. She felt that their low expectations of her, like not being able to work or be “useful”, were detrimental to her.

Gaining qualifications and caring for others were 2 vital elements for participants in building and retaining participants’ sense of progress and achievement. Efstathia shared that keeping her past achievements visible, for example by having her graduation certificate on show, improved her wellbeing, particularly when she was feeling depressed and “useless”. Similarly, Jessica expressed her sense of pride about her academic achievements.

Avinash gained a sense of purpose and joy from caring for his 2 dogs, describing one of them as “like my daughter”. He also said that attending to his car, which he had modified significantly, provided great satisfaction. He had decided to start an Instagram page for his car and wanted to enter it into shows and magazines.

Kathryn derived a sense of self-worth from caring for her disabled granddaughter once a week. Similarly, Joyce valued being a wife and mother, roles that she was able to maintain even when her condition stripped her of other capabilities.

Gender and sexuality

Participants felt that overt social attitudes and expectations about disabled people meant their biological sex, their gender and sexuality went unacknowledged. They felt that social attitudes towards disability affected their gender identity and denied them the ability of being perceived as a sexual person. Joyce was concerned that her partner would no longer find her attractive because of her deteriorating physical health, and Jessica felt that society no longer saw her as a woman. She gave the example of toilets being assigned to men, to women and to ‘disabled’ people, effectively asexualising disabled people.

Recurring issues such as labelling, stigma, social exclusion, hostility, and negative perceptions of self-worth as well as perceptions of sexuality were some of the reasons given by participants as to why they did not generally feel comfortable expressing their ‘disability’ identity in the world.

Some questions to reflect upon are:

• how can we help the general population better understand disabled people’s lived experiences?
• how can we improve people’s communication, empathy and awareness towards disabled people?
• how can we improve awareness, understanding and recognition of invisible impairments among people and the wider society?

Chapter 3: Health and diagnosis

• the process of receiving a diagnosis can be turbulent and easily mishandled, with long-term effects on how a person views their impairment and disability
• being an expert in one’s own health condition can be exhausting for disabled people, especially in the case of rare conditions
• disabled people without a diagnosis struggle to get the formal and informal care, support and recognition they need – this means diagnoses can unlock treatment
• the most effective treatments for managing a condition, or pain, can fall outside National Health Service (NHS) provision, and are therefore only accessed by people with sufficient knowledge, money or support to seek out alternatives

Participants talked about the impact their conditions had on their lives. They shared how they were affected when they received a diagnosis, and the impact this diagnosis had on their medical treatments.

Receiving a diagnosis

Receiving a diagnosis can be a source of comfort. Some participants craved the legitimacy that a diagnosis provided. Without a diagnosis, Armaan felt invalidated and disingenuous about calling himself disabled. However, the process of getting to a diagnosis can also be traumatic for disabled people. Latanya was diagnosed with idiopathic intracranial hypertension (IIH) in 2013, just after she started university. Latanya described her journey to diagnosis as traumatic, due to the dismissive attitudes of medical professionals. This resulted in irreversible sight damage.

Participants’ reactions to their diagnoses were at times influenced by the responses of people around them. Diane explained that her parents had been told abruptly about her condition (a rare form of dwarfism) before she was born and had received little support in coming to terms with it. When Diane was a child her parents had rejected the reality of her hearing difficulties, and she felt that she had always struggled to accept this aspect of her condition herself due to her parents’ negative responses to it. As Diane learnt more about her childhood experiences, she began to understand how all of these were linked to her symptoms.

Impact of a diagnosis

A diagnosis can be a gateway to treatment or wider support. Without it, disabled people are often ineligible for formal care, and can go without informal support and recognition. Without an accurate diagnosis for his debilitating symptoms, Armaan believed he was ineligible for state benefits. He said service providers viewed people as disabled or not disabled, with no space for anyone in between.

Some participants felt it was worth accepting a diagnosis, even one they did not believe to be fully accurate, in order to access support. Jessica said she had only accepted her diagnosis of a learning impairment because it enabled her to receive much needed support.

Everyday health

Coping with severe pain can be extremely debilitating. Many of our participants experienced daily pain, affecting their ability to concentrate, maintain relationships, stay in employment and stay positive. Despite having a close circle of friends, Armaan’s pain meant that he could become reclusive. He explained he would not put himself in a situation where he might feel uncomfortable or cause others to change their plans. Participants described how it could be hard to plan ahead. For Latanya: “Day to day is never the same. I just try and do what the body allows.”

Efstathia was constantly exhausted by pain, and managing her pain was a daily task. Sometimes the pain was so bad she felt “crippled” by it and could only wait for it to pass. She explained: “When the pain is that severe, and there’s no painkillers that can cope with it, it affects you psychologically as well. My memory goes when I’m in extreme pain. I’m more likely to despair and become depressed.”

The variance in pain levels was not the only issue people faced. Kathryn noted that her days varied, with good days and not so good days, and she could not prepare for this in advance. Her vertigo and agoraphobia meant that she had difficulty with everyday tasks like shopping in supermarkets, driving on busy roads, and dealing with unexpected events and new places. Kathryn’s health conditions made it harder for her to look after other aspects of her wellbeing. She had been invited to the hospital for an MRI scan for her knee, for example, but did not know how she would get there without a lift from her children, who she thought may have been too busy to take her.

Avinash struggled to cope with the impact of his impairments, including an anger management issue that significantly affected his daily life. He said he was trying to get himself back to “square one”, having fallen behind with home administration tasks over the years, including insurance, late payment fees, and dealing with various charges. Avinash believed he did not have the capacity to manage these things alone, so they had been put to one side.

Finding out about impairments and health conditions

Participants used different means to learn more about their health conditions and how to manage them. When Avinash was very young, he was diagnosed with attention deficit hyperactivity disorder (ADHD) and Asperger syndrome. Nobody had explained to Avinash what his diagnosis really meant. He had spent most of his life accepting his conditions, but not fully understanding their impact or how he could manage them. He had felt little interest in learning more until a much later trip to his GP had changed his mindset.

Some participants connected online with other people who had similar conditions in order to learn and share experiences and coping strategies. Participants often felt that they knew more about their conditions than health professionals. Some participants with rare conditions said they regularly had to explain their condition to non-specialist medical professionals. Latanya had been required to educate herself on her condition, and regularly suggested treatment and medication options when dealing with doctors. Diane was also used to explaining her condition to professionals. She therefore appreciated the specialist hospital in her county because she did not need to explain her condition to the professionals treating her.

Treatments can be vital in managing physical and mental health conditions. They range from traditional medical symptom treatments to holistic options, and can be offered on a frequent or infrequent basis. However, medical treatment can have negative side effects for disabled people, creating further problems and having a considerable impact on their body and future health.

Medication administered to Alan during an operation had resulted in severe memory loss, which had significantly impacted upon his quality of life. Efstathia had endured 5 operations on her back – an early operation had been performed incorrectly and metal had been left in the wrong place in her body. As a result, she had developed a number of other comorbid conditions, such as Addison’s (the result of ongoing steroid use), fibromyalgia and polymyalgia. Tony had little faith in medical professionals after numerous operations that had been carried out inadequately.

Latanya said that she had repeatedly had her concerns dismissed by medical professionals, during which time her condition deteriorated and caused irreversible sight damage. As a result, she had a permanent shunt in her head, and experienced nearly permanent migraines, extreme light sensitivity, very poor vision, and exhaustion. Latanya expressed how she felt: “I’m still coping with a lot of stuff. A lot of things could have been prevented. My vision wouldn’t be as bad, and possibly my symptoms wouldn’t have been so bad either. But it’s because… I get they’re medical professionals, but what happened there was more ego. I was not medically fine. What’s done is done.”

Despite Kathryn’s agoraphobia, she had been referred to a therapist based in the town centre. She described the visit as “a nightmare”. After one session, she never returned because of the inaccessibility of the therapy setting due to the location. Kathryn felt she had mostly accepted her state of health and did not want to explore new treatments.

Participants had accessed a wide range of medical treatments, from free bespoke medical care to holistic support from new private centres receiving state support. Bespoke medical support was described as key to participants’ treatment plans, alongside alternative therapy for pain management. Joyce had a specialist myalgic encephalomyelitis (ME) nurse who saw her every 6 months and coordinated her medical treatment. Joyce called her treatment team “Team Joyce” and strongly praised the service she had received. Diane spoke highly of her specialist treatment service based in her county, in contrast to her experiences of general practice.

Several participants had sought out alternative treatments as the NHS did not provide what they needed. Armaan’s pain was managed most effectively through massages. He paid for the massages himself for relief. Tony had just started receiving sound bath treatments, which were effective for calming his mind and body.

Many participants reported spending long periods of time waiting, at varying stages of the medical process. They waited for diagnosis and appointments, waited for treatments to become available, and then waited to recover after treatment.

For participants, the age at which they had received their diagnosis and the length of time taken to be diagnosed were as important as the attitudes of family and friends about their condition. Participants discussed long waiting times, for example for medical appointments, medical transport and regular visits from professionals. For some, any negative effects of receiving a diagnosis, in terms of personal experiences and understanding of self, were mitigated by the treatments or services that had been unlocked through diagnosis.

It is vital to consider the following questions:

• how can we provide more support for disabled people who are in the process of receiving a diagnosis?
• how can we improve the experience of receiving a diagnosis, for disabled people and their families?
• how can we create a system in which disabled people with rare conditions feel supported?
• how can we move to a system in which support, care and recognition can be unlocked without diagnosis?
• how can we replicate the “Team Joyce” experience for more people?
• how can we encourage the NHS to provide alternative forms of treatment for disabled people?

Chapter 4: Accessing and managing benefits

• there is confusion around eligibility to formal support
• there is the need for more support to help disabled people apply for benefits and extra assistance
• assessments for Employment and Support Allowance (ESA), Personal Independence Payment (PIP) and Universal Credit (UC) can be experienced as confusing and lacking medical expertise – some participants felt excluded by a system designed to help them and found the process invasive, arbitrary and subject to mishandling
• there is little consistency across disabled people’s different experiences when accessing benefits – disabled people may experience multiple assessment processes, mutually exclusive benefits and considerable bureaucracy
• reliance on the system, and the risk of formal support being withdrawn, can put some disabled people in receipt of benefits under significant mental strain
• participants felt that the system does not adequately encourage and incentivise paid work – if a household member goes to work, disabled people can lose eligibility to benefits

Participants discussed the barriers to accessing their state benefits. They shared their experiences of being assessed for different benefits, and ways they had found to help them manage the process of applying for and maintaining benefits.

Confusion surrounding eligibility for support

Eligibility and application processes for state support were reported to be confusing and unclear, with more support needed to help participants to navigate the system. Participants were unsure about what benefits they could claim to support their needs from either local or national government. Participants like Armaan, who did not have a clear diagnosis, were even more confused about their eligibility and ways to obtain support.

Participants described their confusion about starting the process of making a claim. Shawn explained how you need “your faculties” even to begin. There was the responsibility of assembling all the relevant paperwork. On turning 18, Avinash lost all of the support he had been provided to assist with his impairments and had no idea about his eligibility for support beyond that point. Avinash disclosed that the situation caused to retreat into his shell and that as a result his world became very small. This demonstrated the impact the transition from youth to adult services can have upon disabled young person and their lives.

Confusion can increase when someone applies for multiple benefits. Participants found parallel application processes tiresome and unclear. There is also a major issue of accessibility for people who do not have a computer at home, or access to one, and who find online services difficult. Some charitable organisations provide help to fill out forms, but waiting times can be long and issues can go unaddressed in the interim period.

Experiences of assessments

As there is a great deal at stake (for example, losing housing, benefits and social support) assessments can be distressing experiences for disabled people. This stress can be exacerbated if they have had negative experiences of assessments in the past, in terms of both process and outcome. Participants relayed that this was compounded when assessment centres did not allocate sufficient time to deal with claims. Some participants also noted that their assessors did not seem to be medical professionals, and did not appear to have the expertise required to properly judge their situation or to evaluate the impact their impairments had on their daily lives. Shawn was highly critical of the assessment process: “9 times out of 10 the people doing it are not doctors. They are usually paramedics, nurses, physiotherapists. The last one I had was a paramedic. They just talk to you. I had no physical examination or anything, so how can they really comment on how it affects me? She’s seeing me for about an hour, an hour of my life, and after that she knows how everything affects me.”

A number of participants noted that the assessments were “all talk” and that there was no physical assessment of the body, nor was there observation of the person going about their daily life. Jessica explained that she could never remember everything in one sitting. She knew that she would misrepresent herself in assessments, so she would prefer to be watched over a period of time in her home so that her needs could be properly evaluated.

Latanya found the questions invasive and felt the Universal Credit (UC) assessment process started from a position of scepticism about her needs. The questions made Latanya feel that she was lying.

Living as a couple, Jessica or Simon could only have their capability for work assessed one at a time, which presented extra barriers when attending appointments, as well as increased costs. Jessica described this experience: “We have social services who just get in the way and create havoc. They want to look at us as individuals when we work as a team. And we don’t really know how we work as individuals as we’ve been married for 8 years.”

Importantly, most of the participants strongly disliked being asked to demonstrate what they could not do in assessments. They felt that the system encouraged them to think negatively about their condition. Some participants felt they had been deliberately asked to do things beyond their ability.

Participants spent a great deal of their time waiting for responses after interacting with the state system. They felt this devalued their time. Jessica commented: “Most of our lives are sat waiting.” Participants often had to wait many months for decisions affecting support. Shawn described waiting for his Personal Independence Payment (PIP) assessment outcome and the mental load this placed on him mostly because there had been no communication to reassure Shawn as he waited.

Reapplying for support

Reassessments can feel like an unnecessary source of anxiety for disabled people with long-term conditions. Participants noted what they say as an unnecessary frequency of assessments, even for impairments and medical conditions diagnosed as chronic. Shawn experienced regular anxiety about reapplications, which he felt were unnecessary because he had a chronic illness, which was unlikely to fluctuate. The process also exacerbated his anxiety which was the result of a previous assessment where his car had been taken away, leaving him unable to go out independently.

Reapplying for PIP was particularly difficult for Tony. He had a visual impairment and relied on housemates to read his letters. Tony disliked the “burden” of having to rely on others for regular reapplications and found the process highly stressful, as well as dealing with the loss of privacy throughout the process.

For 10 months Efstathia had been appealing for her PIP to be recalculated. She had been assessed 3 times whilst in hospital. She expressed her frustration: “I’m always getting letters through saying I need to reapply for my PIP. It does my head in. It’s infuriating how you get a certain amount of money each month and then it changes and then it stops and then it changes.”

Cuts following assessments

Cuts to benefits and personal care plans can have significant detrimental effects on people’s health and lives. As a result, participants shared that the possibility of new or additional assessments caused great anxiety and stress.

Efstathia had her social care hours cut from 30 to 20 hours a week. She was in the process of appealing the decision with the help of a charity lawyer, but was finding the process difficult. She was totally “housebound”, and had not been out for months, as her caregiver did not have time to accompany her outside. She was left alone at least once a week for an extended period of time without any company at all. Efstathia stated that she felt “locked down” even before the COVID-19 pandemic. She felt that her local authority had made the decision to cut her hours as a result of limitations to their budget, rather than based on a true assessment of her needs. She commented: “My needs are irrelevant. They think that just so long as you’re getting your meals and your personal care, that’s enough, but a person needs more than that.”

Disabled people communicated that they viewed future assessments, and the reduction in benefits and support that can accompany them, as a continuous threat. Participants felt that their support was precarious and could easily be removed at any time. Shawn described the devastation he had experienced after a PIP interview, when he had lost his motability support and his car was taken away. Shawn was distraught as he saw his car as a critical lifeline.

Managing benefits

Certain benefits are mutually exclusive. Joyce and Clive were not able to receive Carer’s Allowance (CA) and Income Support (IS) at the same time. Clive’s £64 CA was deducted from his IS, making his claim for the latter pointless. Joyce said that this “completely takes away any kind of worth”, or recognition of, his dedication to her care.

Furthermore, while Clive was still in work, Joyce was not eligible for the housing adaptations that the local council had initially promised. She felt that this was “very wrong” and created an incentive to stop working. Joyce believed that home adaptations should be ‘needs based’.

Jessica and Simon were prevented from saving, because if their savings reached a certain threshold [£6000] it would negatively affect their benefits. This meant that Jessica and Simon could never plan for bigger things in the future and felt that they lost an element of control over their money. They were drawn into never-ending dependency on the state for their financial security.

Participants felt confused and frustrated when using the benefits system. They experienced difficulties surrounding assessment and reassessment and had real fears of cuts and changes to support that could greatly impact their lives.

Addressing the following questions may help to overcome some of the difficulties experienced by disabled people in relation to their benefits and support:

• how can we create a transparent system and clarify what benefits and support disabled people are eligible for?
• how can we ensure that assessments are carried out expertly and empathetically, and address the needs and preferences of disabled people?
• how can we iron out clashes, inconsistencies and duplication across assessments for support?
• how can we remove the mental burden and stress of people being reassessed for their eligibility for support?
• how can we create a system of support which is flexible towards individual and household needs?
• how can we give more value to the social and emotional needs of disabled people in the benefits system?

Chapter 5: Accessing and managing support

• some types of care fall between the cracks of medical and social care, for example changing a bed or getting food
• disabled people feel they have to fight for what they are eligible for, by monitoring and tracking paperwork, chasing up processes, and holding social and medical experts to account – individuals who are not able to do this may not receive the support they need
• certain activities are not given sufficient priority, like making sure people leave their house or do something sociable they enjoy
• there is no training for disabled people who opt for Direct Payments (DP) and manage their own care, or recognition of the skills needed to work in this way
• boundaries can become blurred between professional care relationships and informal relationships and friendships
• small acts of negligence in care can be dehumanising and exacerbate feelings of loneliness

Participants shared their experiences of using social care services. They talked about the assessment process for getting the support they needed, as well as different issues arising within their working relationships with carers.

Assessment for support

Social care and healthcare services often provided conflicting advice to participants, and some forms of vital care were said to be covered by neither service. Participants generally experienced tensions between the different priorities of social care and NHS care. Jessica said that she “hated social care”, and that she wanted all her care to come from the NHS. Jessica pointed out that social care staff had no medical expertise about her condition and that they provided unhelpful recommendations like suggesting that she should stay in bed to avoid risks. In contrast, Jessica praised the NHS occupational therapist for understanding her needs and encouraging her to make progress and challenge herself. She said: “I don’t want the wheelchair, I want to be walking. But social care have to catch up because NHS are helping me get back walking. But social care are saying ‘Please sit back down because that’s dangerous, you might fall’.

Several participants were unable to leave home or were at risk of becoming ‘housebound’. In certain cases, neither social care nor healthcare offered the services required for participants to go outside or visit the high street. Not being able to leave her home to shop had very real impacts on Efstathia. In addition, gaps in her ‘domestic care’, often led to her not having adequate groceries. These gaps in services provided other issues for Efstathia as well. For example, she was unable to change her bedding independently and gaps in services resulted in her bedding remaining unchanged. Likewise, Diane also struggled to change her bed regularly. These gaps emerged because this type of support technically fell outside the remit of either care system and played a vital role in restricting Diane’s ability to live independently. Diane also found that the help she needed with cooking and cleaning support was difficult to obtain and she felt that she had to fight for the services she received.

State support systems were also reported to determine what is a ‘necessity’ and what is a ‘luxury’ when it comes to providing appropriate support. Sometimes, vital human needs such as social interaction or fresh air can be deemed unessential. Efstathia felt that social interactions were seen as a luxury. As a result, she did not have enough hours with her carer to be able to go outside or to have the relationships that are a human necessity.

Participants stated that using Direct Payments (DP) enabled them to take control of their care. A key to this being successful was for disabled people to hire carers which met their needs. For example, Jessica and Simon had designed a unique way to interview the candidates, playing a card game with them to gain better insight into the candidate’s personality. They felt that this method provided insight into a potential carer’s personality and attitude. Efstathia directly employed an old family friend as her carer. This meant she felt more comfortable, as she had a pre-existing personal relationship with them. Another key benefit to DP that participants discussed was that using direct care allowed them to choose the duration and frequency of their carers’ visits. This created flexibility and the ability to tailor services to their needs.

However, employing carers directly was also described as a labour intensive process, and one that was under-supported. The necessary skills cultivated through employing carers often go unrecognised and are undervalued in the current system. Some participants felt that managing DP was akin to running a business. Jessica saw her work as being the manager of the 5 personal assistants she and her husband Simon employed to care for them. She reflected that the amount of administrative work involved in operating 5 staff was equivalent to that of a part-time job, for which she was not paid. Using the DP system involved managing pay slips, paying income tax, and a range of people skills. This was both time consuming, and required a specific skill-set. This created barriers for some participants using DP as they had no first-hand experience of being in work. As a result, they often had little knowledge about how to employ or manage someone. Jessica and Simon pointed out the irony of being deemed ineligible to apply for work, but being deemed capable of employing and managing carers.

Having care managed by the council was expressed as a way to reduce the workload for disabled people. Joyce and her husband Clive used their local authority to arrange care, so that they did not have to spend time organising it. They were happy with the carer they were sent via their local council. They appreciated the fact that it was the same carer each week, allowing them to arrange a routine that suited them.

Some participants used Carer’s Allowance (CA) to support family members who provided them with care, and liked being able to reimburse their family for their support. Other participants felt uncomfortable about monetising the care they received from family or friends.

Family was cited as an essential form of support for a number of participants. Shawn’s daughter lived close by and visited multiple times a week to provide care for him. She would often cook and prepare his meals and helped him to bathe. For Jessica, Simon was not just her husband but her official carer as well. In actual fact, as they both pointed out, their care for each other was very much mutual.

On the other hand, Roxanna was uncomfortable with her family providing support. She sometimes felt her family’s focus was on supporting her needs when they were together, rather than spending time as a family. Diane had similar concerns and tried to protect her time with her family by having them not become her carers.

Those using care outside of familial relationships expressed other challenges. For them, normative categories of professional care did not always reflect the relationships that existed between the disabled person and their carer. This often created a mismatch between expectations and reality in care relationships. Roxanna found it upsetting when staff in her shared accommodation moved on, because she had come to view them as friends. She felt abandoned by their sudden departure and she reported that she was constantly having to get to know new people and help them to understand her needs.

However, a number of participants said they preferred these over-personalised relationships when compared with the anonymity of over-professionalised care. Different participants had different views on how much the categories of professional and personal should mix. For example, Jessica and Simon made it clear that the personal assistants they employed to provide care were not their friends. They had experienced problems in the past when boundaries had become blurred, and so made clear from the start that their assistants were at work when spending time with them. Others, like Tony, admitted he did not always understand or respect the line between paid for, professional relationships and informal relationships, because in his life the two were regularly mixed together.

The quality of relationships between the disabled person and their carer was of utmost importance as being cared for can sometimes feel patronising, dehumanising, brusque, invasive and isolating. Roxanna was supported by a number of carers, who were a mixture of agency staff and staff employed by her supported housing organisation. They visited her up to 4 times a day and someone was always available outside of these hours, which was very important for Roxanna. However, she reported that the interactions with her carers felt fleeting, and she observed that staff preferred to chat amongst themselves rather than talk to her. Roxanna was given food and ate alone. Staff interacted with her to perform set tasks, but socialised amongst themselves while ignoring her.

Social isolation was not all that was shared. So was the lack of recognition of disabled people’s requests. During our visit, staff at Roxanna’s accommodation had left her washing in the machine while she was out. This upset Roxanna, as she felt that this was in part due to staff’s avoidance in communicating with her. Alan’s carers also neglected his laundry. He expressed his disappointment: “When I came in, I was very angry. They’re supposed to come in and they didn’t. I wish I could do it on my own. I can’t.”

Jessica and Simon described constantly waiting for visitors, decisions, services, treatment, and carers to arrive. Professionals came and went, and Jessica explained that it was rare for her and her husband to have a day to themselves without being interrupted. They saw days like these as a luxury. Jessica and Simon described constantly waiting for the long line of professionals who all had a role to play in organising their lives and medical needs.

Some participants experienced a significant and unwanted loss of privacy as a result of their dependency on social care services. Carers accompanied Jessica to the toilet and helped her to wash. She commented that with the invasion of privacy from carers “you lose everything”. Jessica and Simon felt constantly watched. They felt that having CCTV monitor them in their home would be preferable to their situation, as it would mean they could continue to be watched without having people physically intruding on them all the time.

Jessica and Simon’s professional carers and local authority representatives had keys to their flat, which felt like an invasion. Jessica shared one poignant example where professionals had entered their living space late at night, without permission, to fix their toilet. The couple’s days were punctuated by people coming into their home and they longed for the days when nobody came.

Latanya described how the carers in her accommodation had regularly entered her home without permission to check up on her. She had decided to reject this loss of privacy by keeping her front door locked from the inside.

Participants highlighted a range of difficulties in accessing and managing their care and support. Reduction in participants’ social support resulted in further isolation, confining them to their homes. Direct Payment (DP) user participants reported there was no recognition of the skills needed to work and receive support in this way.

This is a list of questions to reflect on, to create a more inclusive care system:

• how can we identify, understand and provide the care that currently falls between the cracks of departmental responsibilities?
• how can we ensure that disabled people have the formal care they need to have a fulfilling life, and are not ‘housebound’ or isolated?
• how can we improve non-medical and domestic care to be more person centred, accessible and available for disabled people?
• how can we improve the process of directly employing personal assistants for disabled people?
• how can we provide ongoing support for disabled people who are managing their own care, and recognise the skills they are developing?
• what support can we offer to families and carers of disabled people?
• how can we ensure that care is delivered empathetically and with a desired level of privacy?

Chapter 6: Relationships and support

• disabled people can face additional barriers to meeting their social needs – these can be individual, physical and mental health issues, such as being in constant pain or fear
• the state support system provides formal support and opportunities to socialise, but disabled people can feel lonely when this support ends
• disabled people also encounter physical obstacles including inaccessible houses or buildings when socialising outside of their personal environment
• the social and medical care systems expect family members to care for disabled people, leaving little room for other types of relationship within the family unit, and lowering expectations of disabled people themselves
• it can be hard to keep intimate relationships distinct from caring ones
• the social care and NHS systems struggle to recognise that disabled couples can provide care for each other, and there is often an inflexible understanding of who is a carer

Participants shared their feelings of loneliness and explained that formal social opportunities did not always meet their needs. They also talked about how they felt about their families providing support.

Physical impairments and mental health conditions can create obstacles for disabled people trying to meet their social needs. Diane and Avinash had limited energy for socialising because they both had to manage their pain almost continuously. Both had to sacrifice their social lives during the week because they needed physical rest, but this did not meet their need for social connectivity. Tony had regular contact with friends but admitted he was exhausted and needed to rest more than he did.

People can feel most lonely in the times between care or service provision, especially when living alone. Efstathia’s ex-husband attended hospital appointments with her, but the time it took for him to reach her on public transport meant they did not see each other as often as she would have liked. Efstathia described the sadness of coming home from a long episode in hospital, with no one there to care for her.

Participants also expressed that their sense of loneliness could increase in the hours between activities, when at home and when nothing was happening. Roxanna desired to be highly sociable but felt the acute pain of loneliness from living alone in her flat. She also stated that she felt that she lacked true companionship and that outside of organised activities such as wheelchair dancing and art classes she felt alone.

External physical and social obstacles can also prevent people from socialising. Participants described being unable to visit friends and family at home because their houses were not wheelchair accessible and feeling isolated because of the way disabled people were viewed and treated by individuals and society.

Joyce said that wherever she went in the world with her husband, they had to do lots of planning, such as finding out whether or not the doors were wide enough, if there was a wheelchair accessible lift, and if there were steps in and out of doorways that did not have ramps. The old buildings often presented limitations. Joyce wished that the whole world were more accessible and that it was standard design on all buildings. Being able to move around as independently as possible and be part of the world was a major factor in maintaining her wellbeing. Joyce explained when she was happy and active, she experienced less pain and that her mental health was a major factor in how she survived her condition.

Similarly, for Armaan, events that were fairly straightforward for most people like going to dinner, having a night out with friends, or going away for a weekend often needed a considerable amount of organisation, where everything needed to be planned out and thought through on his part.

When it came to social obstacles, many participants described how their impairments led to a lack of dedication from others to maintaining a relationship. Latanya noted that her university friends had dropped away as her condition had deteriorated. She felt they did not understand the implications of her illness: “People tell me that it makes them uncomfortable when I’m not feeling well so it’s hard for them to be around me. I found that very strange.” She further reflected: “I couldn’t be who I was before, and they fell back.” After that, Latanya had relied on a friend from school for much of her emotional support. She explained that her family were also not comfortable with her medical condition.

Likewise, there were times when Diane felt very lonely. She felt that no one could understand the challenges she faced, not just with her health but also in establishing her identity. Diane talked about the acute loneliness of her teenage years, until she had connected with other people with the same condition, online and via conferences.

Online communities

Disabled people with the skills and equipment to access online communities, including communities of interest, reported that this provided them with companionship. Online Facebook groups were a source of comfort for several participants, and particularly so when health conditions or interests were very specific or rare. Diane’s form of dwarfism was incredibly rare. She had learnt more about herself and how to manage her treatment by talking with people online.

Kathryn regularly spent time connecting with fellow Cliff Richard fans on Facebook, bonding and building friendships, despite not leaving the house much. Jessica used online communities to discuss issues arising for people when employing personal assistants. She had never worked in an office so found this incredibly useful.

Care and support from family and friends

The social and medical care systems can expect family members and friends to provide care for disabled people. When this does not happen, people can find themselves without the support they need. A number of participants observed that medical staff had expected their parents to accompany them to appointments, even when they were many years beyond their childhood. Diane described being asked where her parents were, even though she was an adult. Jessica and Simon noted that their parents were expected to be involved too. However, they felt strongly that they wanted their parents to visit them only as their parents and not as their carers.

Wanting to be viewed as independent responsible adults at appointments did not mean that disabled people did not rely on their family members for care. For participants like Shawn, family was an essential form of support. His daughter lived close by and was his full-time carer. She visited multiple times a week, would often cook and prepare his meals, and helped him wash. As Shawn’s daughter said: “I do everything for him.” As a result, she could not have another job. Similarly, Kathryn had experienced years of being unable to leave her home. She had relied on her young children to do her food shopping, and relied on the kindness of neighbours to take her children to school. Kathryn valued and depended on this support. Without similar support, Armaan said that he struggled to cope with household tasks when his parents went abroad for half of the year.

Putting people into normative categories, with boundaries defining different kinds of relationships, does not always reflect reality for disabled people. However, participants were mindful of keeping intimate relationships distinct from caring ones.

Roxanna felt that her family’s focus was more on supporting her care needs than simply spending time together as a family. Diane had similar concerns and made it clear to her family members that she did not want them to be her carers. She preferred to protect the family time she spent with them: “But they’re my family and friends. When they come round, they come round to see me, not do my housework.”

Joyce and Clive commented that many relationships between married partners “cannot stand the stress” of coping with impairments or illness. In addition, Joyce wanted her teenage sons to be free to “roam the world and live full lives”, rather than feeling a sense of obligation to provide care for her.

Caring responsibilities

Disabled people can have their own caring responsibilities, and this can be a source of concern when thinking about their futures. Armaan feared for a future in which he would fall short of being able to care for his ageing parents, or look after any children.

Formal care systems were also described as struggling to recognise disabled people as carers. Kathryn looked after her disabled grandchild, and Jessica and Simon looked after each other. This kind of care is often not recognised by others, and Carer’s Allowance is only awarded to one person in a relationship, even when both people are disabled. Simon had been asked whether he wanted to place Jessica in a care home, just after they were married. Jessica and Simon were clear that their care was very much mutual, and they functioned as a team. The categorisation within social care systems is not equipped to recognise this.

Participants reflected on their personal relationships and how they were able to meet their social needs. Some participants experienced extreme levels of loneliness and isolation resulting from barriers to social inclusion.

According to the ONS, data from the Community Life Survey, conducted by the Department for Digital, Culture, Media and Sport showed that the proportion of people who felt lonely “often or always” was higher for disabled people than for non-disabled people across all age groups (ONS, 2019b).

Here is a set of questions to inform policy and practice addressing some of the social barriers disabled people face:

• how can we understand the specific challenges arising for disabled people, preventing them from building or maintaining social relationships?
• how can we reduce experiences of loneliness for disabled people?
• how can we create inclusive opportunities for the social participation of disabled people?
• how can we better understand what kinds of support would be useful for disabled people’s families, carers and their wider networks?
• how can we improve support for families, carers of disabled people and disabled people themselves?

Chapter 7: Home

• there is a lack of appropriate social housing for working age disabled people, as opposed to social housing specifically designed for young people or the elderly
• disabled people can experience long bouts of being isolated in their inaccessible home environments
• equipment and records relating to disability treatment and services can take up a large amount of physical space in a person’s home

Participants discussed their living arrangements. They shared with us the details of the adaptations they needed to make their homes accessible.

Disabled people can be placed in inaccessible and unsuitable accommodation owing to a lack of appropriate housing. Diane knew she was lucky that she had been allocated adapted housing by her local authority more quickly than expected, and that it met her needs. However, this had not been the case for many other participants.

Roxanna had been placed in a nursing home, despite only being in her late twenties, because there was no appropriate housing for her age group. She had not been satisfied with the situation as the nursing home did not permit her to be as independent as she felt she could be. As a couple, Jessica and Simon had been given a council-owned specially adapted bungalow, on floodplains, which had flooded the previous year. The adaptations that had been made did not really address their needs. They were also isolated, far from local amenities.

Partly due to housing barriers, several participants had experienced long periods of isolation, which had impacted adversely on their wellbeing and mental health. Efstathia continued to be ‘trapped at home’, with no carers to help her make the trip outside. This was a direct result of a reduction in support from her local council. Efstathia struggled to stay positive. She felt that she was stuck in a small space, and hoped that COVID-19 would create more empathy for people in her situation. As a result of her experience, it was very important to Efstathia that her living space was homely and accessible.

Supported housing

Supported housing can vary greatly in terms of quality of care and sense of community. Tony’s supported accommodation was a lifeline to him, because he had acquired a new set of flatmates who he had started to call ‘family’. Tony had a good relationship with staff and enjoyed the balance of independence and the support they provided.

Meanwhile, although Latanya was able to live independently, she was not keen on her home environment and thought it had been mis-sold to her. Her housing was part of a pilot programme identified by her social worker. Latanya shared that her accommodation was not comfortable and felt the carers lacked empathy. She also did not like that they were able to enter her flat whenever they wanted to. To gain control over who could enter and when, Latanya had started to lock her door at all times. On the whole, at her residence Latanya did not feel like there was a sense of community, and she was not able to make any close friends. Similarly, Roxanna did not know any of her neighbours and felt that there was little sense of community in her sheltered housing unit.

Home adaptations

Home adaptations can have significant physical and emotional benefits, but many participants had to negotiate with their local council to secure what they needed to live independently. Diane needed to have her thermostat placed lower on the wall and to have the height of her kitchen counters adapted to meet her needs. Some of the adaptations she needed had taken a long time to be implemented.

Joyce and Clive found that their local council would not provide any adaptations so long as a member of the household was in work. The council had visited and as Joyce stated: “wrote a huge list of what we needed.” When Joyce mentioned Clive was in work, they had said: “Well you can’t have that, can’t have that, can’t have that. Oh dear, you’d better manage.” Joyce and Clive had to pay what they could to make the changes they needed, until Clive left his job.

Adaptations were expressed as improving lives. Expanding Joyce’s door frame had meant that she was able to go outside in her wheelchair. She expressed how it had felt: “To actually go out of the door, without anyone helping me, was incredible.” Shawn had a range of medical conditions, which significantly impacted his mobility. As a result, he had received adaptations to his house from the local authority, including a stairlift and a downstairs accessible bathroom, comprising a wet room and specialist toilet. The accessible features in the bathroom, allowed him to clean himself properly and gave him back some dignity.

Some participants had made their own adaptations to live comfortably. Diane’s Dad had stepped in to make numerous changes to help her to make her house so that she could be more independent, for example by lowering cupboards and rails. Latanya had made sure that her entire flat felt as comfortable and as soft as possible, so that she could fall down anywhere in her home without hurting herself. Joyce and Clive had restyled their door handles so that Joyce would not get trapped inside any of the rooms.

Smart home technology was also conveyed as helping disabled people to live well in their homes. Shawn found voice-controlled lights useful. His daughters set frequent reminders on his smart device so that he was able to take his tablets on time. Kathryn enjoyed asking her smart speaker to play Cliff Richard songs in her living room. He was her favourite singer.

Life at home

Many participants felt inundated with paperwork from the Department for Work and Pensions (DWP) and NHS. Since it was clear that people needed to hold onto documents from the central and local government to monitor their support disabled people reported devoting whole sections of their home to storing administrative documents. Efstathia’s bedroom and living room were full of piles of papers from the local council and DWP. Jessica and Simon kept boxes of all their paperwork, dated in paper trays, stacked in their bedroom.

Specialist equipment for different health conditions and impairments can also take up extra space in the home, like Joyce’s stairlift and hoist, Shawn’s electric toilet, and Jessica’s wheelchairs. Some participants had specific equipment for going outdoors, like more powerful wheelchairs or rollers, which they also had to store inside their home for regular use. While this equipment could provide extra independence, it could also lessen living space.

Location of home

Home location was a key factor in determining whether participants felt connected to their local area. Tony’s housing location was crucial to him. The bus routes outside his front door provided a vital link between his home and local amenities. Conversely, Joyce noted that the rural location of her home meant that she could become isolated as the local paths lacked wheelchair access. This had huge consequences for her wellbeing. She observed: “It’s so important to see things and still be part of the world.”

Participants’ living experiences were significantly affected by the quality of their housing, the suitability and availability of home adaptations, and their home location.

Figures from the ONS showed that the percentage of disabled people aged between 16 and 64 owning their own home has decreased from 43.6% in the year ending March 2014 to 42.4% in the year ending March 2019. A similar drop was seen in social rented housing (26.6% to 24.7%), however private rented housing increased over the same period (13.9% to 14.9%) as had the number of disabled people living with parents (12.7% to 14.4%) (ONS, 2019a).

This is a list of questions for consideration to make housing more accessible and comfortable for disabled people:

• how can we create more housing, both social and private, that matches disabled people’s needs?
• how can we support disabled people who are isolated?
• how can we ensure disabled people receive the housing adaptations necessary for them to live as independently as possible?
• how can we reward working households, rather than remove eligibility for household adaptations?
• how can we reduce the amount of physical paperwork needed for disabled people to monitor and manage their support and services?
• how can we ensure disabled people’s housing is in locations that allows them to be socially participatory?

Chapter 8: Outdoors

• poor quality pavements can hinder disabled people with mobility impairments, affecting their ability to move around outside or use their local high street
• arranging suitable transport can be time consuming, which means disabled people cannot be spontaneous and free to choose and participate in activities
• medical transport services can exclude people with non-physical impairments – services can also be poor quality, for example leaving unwell patients waiting at home or in hospital for many hours, or failing to give advance warning when nearby or delayed
• state services can undervalue the human need to leave the house and spend time outdoors, and they also underestimate the time it can take to go out with a carer
• disabled people can find public spaces hostile, owing to public attitudes, a lack of toilets, and a lack of safe and free places to rest

Participants shared their experiences of stepping outdoors. They identified a range of barriers to doing so, despite it being widely accepted that time outside is a basic human need.

Accessible pavements are key to enabling people with mobility impairments to move around freely. In our research, pavements were particularly important in rural areas, where people did not live on main roads. Inaccessible rural paths could prohibit disabled people from being able to move around their local area.

For some participants, uneven pavements in their town centre caused major issues for their wheelchairs, particularly manually powered wheelchairs. For Tony, moving his wheelchair around the town required a great deal of effort and physical strength, because of poor quality pavements. For people who use walkers, support canes, mobility canes or who have ambulatory issues, uneven pavement can also pose significant barriers. Additionally, for Tony, weather affected his ability to navigate effectively as the rain made surfaces in the streets slippery. A further complication was that the rain masked the sounds he needed to hear to identify what part of the street he was in.

Having a car can play a key role in maintaining a sense of independence. 6 of our participants felt very strongly that their cars provided a continued sense of freedom, personal choice and safety, even while other aspects of their lives were changing.

Joyce’s car was wheelchair accessible and enabled her to visit her local high street as well as travelling to different parts of the country. Shawn’s car was of the utmost importance to him. It enabled him to do a bit of shopping and connected him to the outside world. When Shawn’s car had been removed following a Personal Independence Payment assessment, he recalled: “I had nothing.” Diane and Armaan depended on their cars to continue working. Public transport was not accessible to either of them so their cars were key to their continued employment.

Public and accessible transport options can be useful, but can also involve intense preparation and long waiting times. Jessica and Simon liked to travel independently on public transport when they could. They explained that they needed to book accessible transport ahead of time, meaning they had little freedom and spontaneity to travel as they would have liked. Jessica reflected: “The world is different. You have to book if you want to use a bus, you have to book if you want to get a train. That’s a luxury.”

Medical transport

Relying on medical transport can be highly inconvenient, and the option is often unavailable for disabled people with non-physical impairments. Kathryn’s agoraphobia, vertigo and panic meant that she was unable to drive. Since she was also ineligible for medical transport, she was unable to reach a hospital appointment.

Efstathia relied on medical transport for hospital appointments. The researchers went with her to hospital and experienced first hand the long waiting time, the lack of communication about when the bus would arrive, and the risk that Efstathia would miss her medical appointment. Efstathia described many such instances of waiting several hours, and of missing appointments, because of the transport system.

After Efstathia’s appointments, there was often another long wait for transport to take her home. Additionally, Efstathia was not permitted to take someone with her, so her carer had to travel the long journey to Efstathia’s accommodation, and then make their own way to the hospital. Returning in the same manner resulted in a long working day for the carer.

Preparing for outside

Some participants needed to do a lot of preparation to go outside. Armaan described his routine for leaving home. He made sure that he had everything he needed, and carried out a series of exercises to minimise his pain. Many participants had additional equipment for going outside, including outdoor wheelchairs, wheelchairs for going in cars, and rollators to lean on. Setting up equipment took a lot of additional time in the lives of participants.

Other participants needed a person to support them to go out. Without appropriate support, disabled people can become stuck indoors. Efstathia had not left her home since her social care hours had been cut by her local council. Her carer did not have time to accompany Efstathia to the high street as well as making sure she had food and a clean home. As a result, Efstathia had become entirely isolated.

Public spaces

Public spaces can fail to meet disabled people’s needs. As such, disabled people can have concerns about using them. Shawn tried to go to the shops when he was able, but did not have anywhere to rest when he visited the local high street. He described trying to cover up his rest breaks by pretending to look in shop windows.

Shawn also needed to use the toilet regularly, and had to ask cafes and restaurants for permission to use their facilities. He presented his disability card in order to justify his request, and normally he was allowed access. However, this did cause him some embarrassment.

Kathryn’s agoraphobia meant that she had difficulty accessing public spaces. Kathryn felt that no one in her local supermarkets would understand her needs. She was concerned that she would be trapped outdoors and have a panic attack. Kathryn commented: “The biggest problem with it is the fear of the attack, rather than the attack itself. That makes the agoraphobia worse because I don’t want to go out.”

The general public

The general public can lack understanding of disabled people’s needs and can even demonstrate hostility towards them. Latanya had experienced hostility for taking up space on the pavements, so she felt conspicuous and insecure in public. She had a white cane but did not like using it. Latanya was tall and felt that she took up too much space using the cane. However, without the cane, people were rude to Latanya if she accidentally walked into them or moved slowly. Kathryn summarised her general experience of the public: “One of the worst things is people being patronising.”

Wheelchair-user participants revealed that public spaces and businesses often did not understand what it meant for them to be ‘wheelchair accessible. Diane frequently asked if restaurants were wheelchair accessible, only to be given the wrong advice. Diane explained: “It feels like it’s obvious to me what it means to be wheelchair accessible, but obviously some people don’t even know what it means.”

Avinash was concerned about going outside and getting into trouble owing to his anger management issues. He rarely left his home and made sure someone was with him when he did. His family’s reactions to his impairments had created a fear that everyone would react in the same way. Avinash said: “It’s not that I like staying at home. Certain things stop me from going out. I’ve got a few issues that mean it’s safer if I stay at home.”

Tony frequently travelled to London, either with a support worker or on his own, staying in the same hotel where he knew the staff. Tony was also a regular public transport user, which gave him independence. He greatly benefited from the availability of the public transport system in his city, however, he was often let down by bus drivers who remained in their cabs rather than putting out the wheelchair ramp for him to get on the bus. Tony described how it was exhausting to explain his needs to others and that sometimes he could not face another day of struggle. He often used alcohol to help him feel able to lower his inhibitions about his conditions and open up to others.

Importance of being outside

Being able to step outside can be critical to wellbeing, specifically for disabled people whose opportunities to venture out is often limited due to different social barriers, such as lack of access and appropriate transport, and the negative attitudes of the general public. Both Jessica and Shawn described the importance of having a garden they could access. For Shawn keeping active and being out and about improved his health and well-being. Kathryn also enjoyed gardening as it gave her a safe space outdoors which she was comfortable in.

Holidays can provide joy and improve people’s quality of life. Joyce described the joy of a holiday with her husband to Scotland. She was grateful for all of the adaptations that tourist sites had made so that she could experience them. For Kathryn, however, going on holiday could involve lots of trials due to the lack of understanding of invisible impairments by the wider public. She felt that having some kind of identification lanyard could work toward raising awareness of mental health issues.

Participants faced difficulties when going outdoors. Inaccessible pavements and public transport, as well as the attitudes of the general public, presented various challenges.

This is a list of questions that we feel will help to direct policy and practice to accommodate disabled people with a range of impairments when using transport and public spaces:

• how can we ensure that all pavements are inclusive of those with impairments that impact their mobility?
• how can we improve medical transport so that all disabled people can access medical and other important appointments?
• how can we enhance public spaces so that they meet disabled people’s social, emotional and physical needs?
• how can we ensure that everyone feels safe and supported to leave their home, when they wish to do so?

This report evidenced the findings of our research project, which put a spotlight on the everyday lived experiences of a broad range of disabled people. The project was carried out at a time when data about disabled people was of variable quality and when there was very uneven coverage.

This report presented the views, insights and lived experiences of disabled people. Its goal is to aid government departments to identify the policy changes that are urgently needed, and to help them develop and monitor specific policies that may break down these identified barriers. This is expanded upon in the National Strategy for Disabled People (NSfDP). The data consistently indicates that disabled people face enormous challenges and barriers to living a socially valued life of inclusion compared with non-disabled people.

Participants said that they believed in opportunities for change, given the radical reformulation of every aspect of life brought about by COIVD-19, and subsequent empathy and understanding about the experiences of disabled people. What is needed is a clear and positive vision on disability which is fully owned across government departments and bodies.

At the end of each chapter we highlighted specific questions relevant to the given topic, to inform practical changes to policy that could strengthen the ability of disabled people to participate fully in mainstream society.

Department for Work and Pensions, (2020). The Employment of Disabled People (PDF). Department for Work and Pensions. Accessed on 27 November 2020.

Office for National Statistics (2019a). Disability and housing, UK . Office for National Statistics. Accessed on 27 November 2020.

Office for National Statistics (2019b). Disability, well-being and loneliness, UK: 2019 . Office for National Statistics. Accessed on 27 November 2020.

Office for National Statistics (2020). A08: Labour market status of disabled people, November 2020 . Office for National Statistics. Accessed on 27 November 2020.

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February 28, 2024

How Do Disabilities Impact Daily Life and Activities?

Do you ever go to bed at night thinking about the many things you’ve done during the day? That morning, you pulled yourself out of your slumber, then went to work or school. Maybe later you made meals or did chores. Perhaps it was the weekend, and you hung out with friends at the community pool or went shopping for your sister’s birthday present. 

Our lives are filled with daily tasks, activities, and responsibilities. For those of us with a disability, these tasks might be more difficult to complete. The specific limitations depend on what type of disability a person is living with. In addition, it depends on the kind of support we have; and how we balance our strengths, needs, and challenges.

In this blog, the Direct Support Professionals (DSPs) at ALSO provide details on how disabilities can impact the everyday activities of people with intellectual and developmental disabilities. We’ll also describe how individuals with disabilities can thrive in the community alongside their peers without disabilities—as classmates, co-workers, neighbors, and friends.

Why Do Disabilities Impact Daily Life and Activities?

There are a number of different medical, legal, and social definitions for the word disability . Let’s start with what Merriam-Webster’s Dictionary  provides:

 “…a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions.” [1]

The term, ‘disability’ refers to individual functioning,  [2] such as physical impairment, sensory impairment, cognitive impairment, mental illness, and various chronic illnesses.

When it comes to specifically why disabilities impact daily life and activities, we need to understand how society has often responded to the concept of disability. According to Deborah Kaplan of the World Institute on Disability ,[3] two older models of disability, the medical and the rehabilitation model, regard a person’s disability as something that needs to be ‘cured’ or somehow ‘fixed’ in order to fit properly into society’s norms.

The social model, Kaplan says, emphasizes that disabilities are better viewed as part of the human condition, a normal part of everyday life. When policies fail to make reasonable accommodations for varying needs, for example, wheelchair ramps or elevators, this amounts to disability discrimination because it prevents those with physical disabilities from getting to work, school, and even their own living space.

The World Health Organization (WHO) is one of many that has clarified the intersection between the individual with other personal and environmental factors, such as:

• Negative attitudes
• Inaccessible transportation
• Lack of social support [4]

These create barriers that interfere with the ability to participate in society on an equal basis. Furthermore, it creates other inequities, like a higher risk of decreased health status , poverty, substandard education, and social exclusion . [5]

LEARNING MORE: The Definition of Disability: Perspective of the Disability Community. [6]

Top 7 Ways Disabilities Impact Daily Life and Activities

According to WHO, about 1.3 billion people worldwide  [7] are experiencing some kind of significant disability. In fact, most of us will experience a temporary or permanent disability at some point in our lives. As the global population of older adults continues to grow, so will incidences of emerging disabilities such as physical and cognitive decline.

The same type of disability never affects different individuals in the same way. One example of this is cerebral palsy  (CP) [8], a group of conditions that mainly interferes with movement and posture. Some people with CP also have intellectual disability, epilepsy, or visual impairments.

With this knowledge in mind, let’s talk about 7 ways disabilities can impact everyday life.

1. Activities of Daily Living (ADLs)

ADL refers to the skills needed to take care of oneself. [9] There are two categories of ADLs: basic ADL (BADL) and instrumental ADL (IADL).

BADLs are the skills required to fulfill an individual’s basic needs, such as personal hygiene, self-feeding, grooming, toileting, and walking. IADLs require a higher level of cognitive, attention, and problem-solving skills, such as:

• Driving a car
• Managing finances
• Taking medication (including filling prescriptions)
• Completing household chores and home maintenance
• Food preparation

There are many ways to compensate for the functional limitations caused by a disability. Walk-in showers, grab bars, and raised toilet seats are just a few examples of low-tech devices that help people with physical disabilities increase their independence.

LEARN MORE: Home Accessibility Solutions for People with Intellectual/Developmental Disabilities

2. Community and Social Participation

A sense of community and the ability to nurture social connections  [10] is a basic human need. We thrive on the benefits of social interaction. People with disabilities often experience social isolation from their communities due to:

• Social stigma
• Lack of accessibility
• Communication difficulties
• Limitations in social skills/self-confidence

Loneliness is detrimental to a sense of well-being. This leads to real medical and mental health issues, such as depression and anxiety. On the other hand, opportunities for positive social interaction offer several benefits:

• Improving self-confidence and self-esteem
• Forging positive social relationships
• Improving communication and social skills

The ultimate outcome of positive social interaction is better quality-of-life and improved emotional well-being.

LEARN MORE: The Importance of Life Skills for Young Adults with Disabilities.

3. Recreational and Physical Activities

Exercise class. Ceramics. Music. Painting. Swimming. Soccer. Nature walks.

Recreational activities help us to express a facet of our personalities that we wouldn’t normally get to express. Possibly they help us escape to a different world for a short time. The need for self-expression and escapism is also an important part of daily life for those of us with disabilities. In addition, there’s a significant association  [11] between leisure activities and physical, emotional, and mental health.

The barriers to participation in physical activity and other recreational pursuits are often an issue of limited access. Accessibility has been improving to an extent. For example:

• Wheelchair accessible nature paths
• Audio-supported assistive technology at museums
• Sign-language communication at theatrical performances

LEARN MORE: The Impact of Gardening for People with Disabilities

4. Education

The existence of a disability can have a strong impact on educational opportunities. Some of these disabilities include:

• Learning disabilities, such as dyslexia
• Neurodivergent disorders, such as autism
• Physical disabilities, such as cerebral palsy

Equal access to education has been a long-standing barrier for people with disabilities. It was a common assumption that if someone had a disability (even a mild cognitive impairment) it was impossible for them to learn and contribute to their society. Many decades of strong disability advocacy have resulted in legislation such as the Individuals with Disabilities Education Act (IDEA).

LEARN MORE: Assistive Technology for Students with Disabilities

5. Employment

Even though it’s well-documented that hiring people with disabilities is good for business [12] many employers have incorrect assumptions about hiring someone with a disability, including that reasonable accommodations would be too expensive. These assumptions can be a major barrier to competitive employment.

Searching for a job, filling out an application, and getting and keeping a job can be challenging for someone with impairments in cognitive function. This is why it’s important to have guidance and support from DSPs, vocational specialists, occupational therapists, and caseworkers.

LEARN MORE: The Benefits of Hiring People with Disabilities

6. Independent Living

At ALSO, we’ve experienced firsthand the excitement that those we support have when they move into their first apartment. Even people considered to have severe cognitive impairments have successfully learned how to take care of themselves, manage a budget, complete chores, and get themselves to work.

A major barrier to independent living isn’t related to someone’s disability, but the current economic climate. Housing has become so expensive that disability benefits don’t cover the housing costs, even with a well-paying job!

LEARN MORE: How Housing Affects Disability Support Services

7. Community Resources

We often take our many community resources for granted, such as public transportation, city parks, recreation centers, and libraries. The ability to access community resources is an IADL. As we said earlier, IADLs require complex cognitive abilities.

Many areas of the community don’t have the necessary structures (e.g. curb cuts, widened doorways) or assistive technology (such as audio crossing signals) to accommodate disabilities. These constitute environmental barriers that prevent full community inclusion of persons with disabilities.

LEARN MORE: How to be More Inclusive of People with Disabilities in my Community

How do Support Services Help People with Disabilities?

DSPs and other professional support services such as physical and occupational therapy, social work, counseling, and recreational therapy facilitate independence and improvement so many important skills, including:

• ADLs and IADLs
• Communication
• Adaptability
• Problem-solving
• Using assistive technology
• Emotional intelligence
• Self-advocacy

In addition, professional support services, especially those at ALSO, help those we support to navigate and break down the barriers that interfere with equal participation in independent community living, competitive employment, and high-quality education. This is why we call ourselves Advocates for Life Skills and Opportunity!

What Services Does ALSO Offer?

ALSO offers many types of support services that improve every aspect of daily life for the people we support. We are premier service providers for people with developmental and intellectual disabilities. Our disability support services include:

• Supported Employment
• Residential and Housing Services
• Supported Living
• Children’s Services

Interested in learning more? Contact us today at [email protected] or (503) 489-6565.

• Merriam-Webster. (n.d.). Disability. In Merriam-Webster.com dictionary. https://www.merriam-webster.com/dictionary/disability.
• Disabled World. (2023, July 9). Disabilities: Definition, Types and Models of Disability. Disabled World. Retrieved February 20, 2024 from www.disabled-world.com/disability/types/
• Deborah Kaplan, (2000). The Definition of Disability: Perspective of the Disability Community, 3 J. Health Care L. & Pol’y 352.  Available at: http://digitalcommons.law.umaryland.edu/jhclp/vol3/iss2/5
• World Health Organization. WHO (n.d.). Disability – Overview. https://www.who.int/health-topics/disability#tab=tab_1
• World Health Organization. WHO (n.d.). Disability – Health inequity. https://www.who.int/health-topics/disability#tab=tab_2
• World Health Organization. WHO (n.d.). Disability – https://www.who.int/health-topics/disability#tab=tab_1
• Mayo Clinic Staff (2023, September 28). Cerebral palsy: Overview. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/cerebral-palsy/symptoms-causes/syc-20353999
• Edemekong PF, Bomgaars DL, Sukumaran S, et al. Activities of Daily Living. [Updated 2023 Jun 26]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK470404/
• (Author). (n.d.) The importance of social networks and community inclusion for individuals with IDD. New Concepts for Living. https://ncfl.net/the-importance-of-social-networks-and-community-inclusion-for-individuals-with-idd/
• CDC (n.d.) Physical activity for people with disability. https://www.cdc.gov/ncbddd/disabilityandhealth/features/physical-activity-for-all.html
• Herson, K. (2021, December 3). Seven Reasons Why Hiring People With Disabilities Is Good For Business. https://www.forbes.com/sites/forbesbusinesscouncil/2021/12/03/seven-reasons-why-hiring-people-with-disabilities-is-good-for-business/?sh=23f4c98e1832

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My Problem With College Admissions Essays as a Disabled Person

As a 20-year-old transfer student who spent a summer studying abroad, dragging out the old same elegized story of my life as a young person “robbed of a normal carefree youth” is a bit boring. I’m tired of hearing my story, too. The story isn’t untrue or unworthy of being heard; it’s just so often associated with the disabled community that it becomes the only story expected of me. The disabled community is the largest marginalized minority in the world. There are many narratives worthy of being told, but so often they are overlooked for the inspiration porn , instantly shareable Facebook headlines.

Don’t get me wrong, I love a good overcoming adversity story. These stories are valid and so important. The essays I write for those college admissions boards, outside of how my disability affects my life, are not necessarily a Penguin Classics level work ready to be sent off to the closest corporate bookstore. The essay I try to write focuses more on my personal journey of self-discovery that genuinely starts out with “I’m a cliche” and goes on to wax poetic about the magic of soul searching. But when does the disabled community get to stop “overcoming adversity” and allow members to be known as individuals? My multiple sclerosis is an important part of my life, but as I’m sure many disabled kids who have applied to college can attest: it’s also the hardest to make sound not boring.

Personally, before I was diagnosed my life was a whole lot of sleeping all day, then vomiting if I ate anything. Really fun to relive as you beg a school for scholarship money, right? This is why I wholeheartedly believe college application essays are inherently ableist. I understand my privilege in this world as someone who was diagnosed later in her youth and was fortunate enough to have opportunities — like study abroad, or even being able to afford my medical care.

This is not what colleges want to hear about, though. Sure, maybe under the veil of how my disability affects such experiences and how I overcame it. (Spoiler: Sometimes I don’t; life for disabled people isn’t endless amounts of awe-inspiring obstacle climbing.) The personhood of any disabled person cannot be boiled down to one label. A disabled life is more than just one bad thing after another, so let me revel in the good once in a while.

Now, excuse me as I finish my Common App essay with this last line of lamenting my disabled experience. Hey, I still need that scholarship money.

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My journey to self-acceptance as disabled was full of realizations about what labels are and who gets to define them. I am disabled with a lot to say and not talented enough to join a punk band.

291 Disability Essay Topic Ideas & Examples

🏆 best disability topic ideas & essay examples, 👍 good essay topics on disability, ✅ simple & easy disability essay titles, 💡 most interesting disability topics to write about, 🎓 good research topics about disability, ⭐ interesting topics to write about disability, ❓ research questions about disabilities.

• How Does Society Treat the Disabled People | Essay on Disability The practical demands of these jobs, such as sales and sports, would not allow a disabled person to engage in them meaningfully.
• Students With Disabilities in Higher Education Institutions Accommodations for students depend on the disability type that the student has, and whether the disability allows the student to get an accommodation in the institution.
• Poems with Disabilities by Jim Ferris This is good evidence for the argument of the need to eliminate the issue of ableism. Language evolves gradually, and countering the issue of ableism is a long-term goal.
• Managing Students With Disabilities Instructional issues that are encountered in education are those arising due to the inability of the students to acquire, maintain, and relate the skills that are learned in class to other settings within and outside […]
• The Problems of Children With Disabilities and Possible Ways of Solution It is very important for disabled people to be on the same level with others in the conditions that compensate the deviations in the development and constraints of the abilities in learning.
• Children With Learning Disabilities The following research questions will be used in achieving the objectives: What is the role of learning disabilities in affecting the ability of the students to learn?
• Sociocultural Barriers for People With Disabilities On the other hand, stigmatization, stereotyping and prejudice have been highlighted as the barriers to social inclusion of people with disabilities in society.
• Computer-Based Technologies That Assist People With Disabilities The visually impaired To assist the visually impaired to use computers, there are Braille computer keyboards and Braille display to enable them to enter information and read it. Most of these devices are very expensive […]
• Women, Development and Disabilities The mission of the organization is to enhance the voice of women in society and influence other organizations that advocate for women rights.
• Government Grants for People With Disabilities The paper will be based on the conditions of disabled people and the federal or state grants that they could receive in order to facilitate changes in their health and work.
• Learning Disabilities: Differentiating ADHD and EBD As for the most appropriate setting, it is possible to seat the child near the teacher. It is possible to provide instructions with the help of visual aids.
• Children With Disabilities in Education By the end of the experiment the student will demonstrate his ability to understand the information, to discuss it, and to reflect his ideas in writing.
• Intellectual Disability Considerations The best way to help an intellectually disabled individual is through developing interest in learning more about what intellectual disability entails.
• Disability is not Inability: A Different Perspective The Tourette’s syndrome is a condition that affects the normal functions of both the body and the mind of an individual, hence causing them to do or utter inappropriate things given the circumstances and environment.
• Employees With Disabilities and Their Workplace Behavior In H3, the authors found that employees with disabilities remained loyal and committed to work and were satisfied with their job.
• Impact of Individuals With Disability Education Act (IDEA) on Education In this case, the judges were of the opinion that the state had the power to choose whether to terminate federal aid offered to facilitate education or, agree on the fact that the Department of […]
• Ableism: Bias Against People With Disabilities People concerned with rights advocacy ought to ensure a facilitated awareness of the distressing impacts of ableism through the inclusion of the subject in private and public discussions.
• Defining Disabilities in Modern World Defining disability has not been easy due to the various opinions related to the understanding of the concept. Disability has significant impact on the society due to the relationships that exists between the individual and […]
• Mental Disabilities: Characteristics and Causes TBIs are caused by an impact of the head against a blunt object or from its penetration by a sharp object; it often results from vehicle accidents. Autism is a developmental disorder that influences the […]
• Sports Can Improve the Psychological Well-Being of People with Disability Maresova et al.maintain that viewing the self as a bother and worthless leads to psychosomatic challenges among numerous people with disabilities.
• Adaptive Behavior Skills and Intellectual Disabilities Four assessment tools are important for identifying adaptive behavior and skills: the Adaptive Behavior Scale, the Scale of Independent Behavior, and the Vineland Adaptive Behavior Scale.
• Disability Models, Labels, and Language Which are some of the messages that may be conveyed to the Children that One Works with through the Tendency to Ignore Differences or Stigmatise those who are Different?
• Understanding How the Medical and Social Model of Disability Supports People With Disability Medical model is against social discrimination of people with disability and refers to this as worsening the condition. Medical model of disability is critical to the disabled rights and civil rights.
• Autism and Educational Process Owing to these adverse effects that can stem from autism and the shear prevalence of the condition in the country’s population, a lot of research effort has been dedicated to the early diagnosis and treatment […]
• Lawsuits Regarding College Students With Disabilities Abuse is one of the factors considered to have discouraged physically challenged students from pursuing their academic careers.
• Living with Disabilities from an Insider’s Perspective Additionally, Armendariz was able to use a prosthetic arm to assist with her disability which she recalled as being helpful before it led to severe negativity from her peers at the time.
• Disability Equality of a Disabled Lone Parent Although the officials were initially reluctant owing to her physical condition and the nature of work she was to perform, they allowed her to try.
• Grandparents Raising Grandchildren With Disabilities In the case of their absence, these grandparents worry about the well-being of their disabled grandchildren and the influence they have on other children.
• Inclusive Education and the Cultural Representation of Disability The 1981 education act together with the Warnock report of 1978 completely changed the conceptualization of the special educational needs as it was known then and brought about the special education needs and the integrative […]
• The Individuals with Disability Education Act Therefore, the Act was developed to protect the rights and meet the needs of disabled children and their parents, as well as ensuring that all children got equal opportunity in education in the United States.
• Student With Disability in Saudi Arabia: iPad Usage Introduction and Overview In order to improve the quality and accessibility of education, it is necessary to welcome diversity amongst students and create a learning environment that will allow maximum participation of students with special […]
• Amundson on Hedonic Psychology, Disability, and Life Quality To facilitate the introduction of a new concept to the field of psychology, Amundson makes a sound decision to specify the essence of the standard view, according to which other definitions and comparisons can be […]
• Learning Disability and Special Educators’ Duties In conclusion, the case study provides the story of Larissa, a young El Salvadorian girl who is disabled because of learning disabilities such as reading and writing.
• Rights of Young Women With Intellectual Disability in the US Since most primary care physicians lack experience and education, the barriers to adequate medical care for adults with intellectual disabilities are being strengthened in sexual health, a sensitive topic for people with and without disabilities. […]
• Autism and Disability Advocacy People with autism can contribute to the diversity of disability culture by expanding understanding of what disability is and how it can be accepted.
• People With Disabilities in the Frida Movie After the accident, her father bought her a canvas that she would use for painting because she loved art and was an artist, helping her cope with her disability.
• Extreme Obesity as a Risk Factor of Respiratory Disability One of the most widespread risk factors that perturb the prevalence of respiratory impairment is extreme obesity. In conclusion, extreme obesity is a dangerous condition that may pose as a threat to the life of […]
• Safety Evacuation for People with Disabilities First, before a disaster occurs, the government should be aware of the number of individuals in the scenario and keep track of them to verify the figures are correct.
• Individuals with Disabilities: Social Misconceptions One of the misconceptions I noticed is the community’s attitudes to people with disability. Community views about individuals with disabilities can also be impacted by features of the person with a disability unrelated to the […]
• Individuals With Disabilities: Prejudice and Discrimination I researched that people with persistent medical or physical disorders, such as cerebral palsy or multiple sclerosis, who have speech, articulation, or communication impairments, for example, are sometimes seen as having an intellectual deficiency. Corey […]
• Special Olympics and Profound Intellectual and Multiple Disabilities Together with partners, the Special Olympics aspires to improve the health outcomes for people with physical and mental disabilities to close the gap with the healthy population who are more advantaged in terms of access […]
• Abortion of a Fetus With Disability It is worth paying attention to the fact that it is precise because of such things that terminations of pregnancy occur so that a person does not come into contact with obvious prejudices still actively […]
• The Ohio Department of Developmental Disabilities Policy The paper outlines the proper policy and procedure of incident reporting and investigation and thus, provides how to become an agent for the Ohio Department of Developmental Disabilities and satisfy individuals receiving services.
• Ohio Department of Developmental Disabilities’ Staff Training Specifically, the introduction of the assessment modules for the evaluation of the staff members’ compliance with the set requirements will be enacted.
• The Quality of the Working Environment for Persons With Disabilities The progressive introduction of new practices more tolerant of the disabled will be carried out at every stage of the work cycle and in every segment of the corporation as a connected infrastructure.
• Developmental Disabilities: Best Practice and Support Family therapy and the creation of support groups seem to be an effective method for children with disabilities and their environment.
• Bronx Developmental Disabilities Council: Organization Assessment During events, council, and committee meetings, the organization provides printed materials with information on disability and the prevention of social distancing of people with disabilities.
• Assistive Technologies for Individuals with Disabilities A rehabilitation consultant will be able to recommend this equipment to people who are acutely worried about the inability to use a computer and the Internet to ensure a comfortable life.
• Addressing Intellectual Disability Disorder Epidemic The process of child growth is different in diverse parts of the world, and depending on the cultural values and language, children can create their specific beliefs and way of living.
• Smart Farms Hiring People with Disabilities Although Smart Farms is a non-profit organization and benefits from donations, the workers play their role in income generation by working on the farms and sales.
• Traumatic Brain Injury: Chronic Illness and Disability The most common cause of a traumatic brain injury is a severe blow to the head or body. He is confined to a wheelchair and is under the care of a full-time caregiver.Mr.
• Instruments to Assess People’s Health, Disability, and Quality of Life In conclusion, it is possible to present the strengths and limitations of the instrument under analysis. Now, it is rational to comment on the primary strengths and limitations of the instrument.
• Americans with Disabilities Act and Nursing Practice Acts such as the Americans with Disabilities Act affect not only the political and legal environment in a country but also the rights and responsibilities of nurses.
• Inequalities in African Women and Disability Studies The problem is that African women are subjected to a higher risk of sexual abuse and illnesses than females of other nationalities.
• Abortion on the Grounds of Disability Removing a fetus from the woman’s womb results in death which is contrary to the morals of the community that is against killing.
• Reasonable Accommodation for the People with Disability A reasonable accommodation in the recruiting process is a change in the nature of the job or the work context that allows a person with a disability to qualify for the position while still having […]
• Life of Individuals Dealing with Disabilities The child’s image hitting the t-ball also showcased a powerful issue, that disabled individuals should be treated similarly to other people and given equal opportunities to give them the chance to perform optimally.
• Partnership for People with Disabilities’ Mission The mission of this organization is to partner with stakeholders both in the intellectual and developmental disability community and other interested groups at Virginia Commonwealth University. The organization was founded in 1985 to better people’s […]
• The Experience of Parents of Children With Disabilities Enhancing support for the mental well-being of parents of children with a disability: developing a resource based on the perspectives of parents and professionals.
• Diabetes Mellitus as Leading Cause of Disability The researchers used data from the Centers for Disease Control and Prevention, where more than 12% of older people in the US live with the condition.
• Disability Programs and Their Funding Issues The public has to promote programs for people with disabilities to address the challenges that they and their families may encounter, and everyone should strive to overcome those challenges as a part of the community.
• Healthcare Disparities in People With Disabilities In addition to health care disparities, such as poor access to care, including preventive one, and dependency, people with disabilities also face higher morbidity and lack of insurance.
• Employment for People With Disabilities Accommodation is also considered to be a restructuring of work and the attraction of other personnel to help in adaptation – as it should have happened with Adele.
• Media and Disability Journal Responses During the study of the literature, it was revealed that in boarding schools, professionals who thoroughly know the features of the disease do not always take care of the child.
• Laws Protecting the Rights of People With Disabilities The aim of this essay is to research the law that protects the rights of people with disabilities in the context of sporting events.
• Disability-Adjusted Life Years in the US and India Therefore, the main contrasts are evident in the ratio of non-communicable and infectious diseases, a greater variety of non-communicable illnesses in the US, and a considerable impact of drugs on the lives of American citizens.
• People With Disabilities in Society I think that these people are powerful and inspiring, as they prove to the world that it is possible to live life to the fullest with a disability.
• Disability Discrimination and How to Deal With It The problem of health disparities is a crucial health issue, and it requires the early introduction of strategies that can reduce such inequality.
• Real Magazine Exhibiting Disability Artworks The organization aims to provide their help in selling the paintings and other products to provide the participants with the necessary confidence and support in the realization of the incentive.
• People With Disabilities and Social Work Moreover, there is a tendency towards the rise in the number of such people because of the deterioration of the situation and the growing number of environmental concerns.
• Provision of Quality Services to People With Disability Provision of quality services to persons with disabilities entails addressing the environmental and attitudinal hurdles created by the community, which impede the autonomy and contribution of persons with disabilities.
• Alternate Assessments for Students With Learning Disabilities The problem is that many school districts experience difficulties with proposing adequate formative and summative assessments for those students who require special attention.
• People with Disabilities’ Problem of Employment Although truck driving can be a stressful job, it is not evident if it is true, and thus, it is important for John to experience the job-related himself and determine whether he can handle it. […]
• Living with Disabilities in the Nondisabled World A variety of laws, initiatives, and regulations are currently implemented to ensure simpler and less costly access to information resources and the functionality of a device.
• Disability Hate Crimes in England and Wales An estimated 19% of the population in England and Wales is disabled, and the scale and scope of DHC are grossly underreported since over half of all the incidences go unreported.
• United Arab Emirates Schools: Students With Learning Disabilities The current UAE public school environment does not allow for the provision of the necessary skills due to the lack of a proper teaching strategy.
• Workplace and People With Disabilities The purpose of the research is to make coherent and accurate observations in regards to the usefulness of the given method in improving the overall attitudes of people and organizations toward people with disabilities.
• Interview on Permanent Disability due to an Accidental Injury He also said that forgiving was the best way to free oneself from anger and that it helps in the recovery process. In the beginning, it was difficult for him to accept.
• Disability Studies as an Academic Discipline By focusing on medical and social constructs of disability, disability studies tend to be multidisciplinary, intersecting the humanities and social sciences.
• Career Counseling for People With Disabilities To sufficiently research, the issue of career counseling for individuals with disabilities in the academic press, a list of journals that offer such information was developed.
• Impairment Pain Management and Disability Equality The purpose of the policy is to examine approaches to pain management to ensure disability equality. The first method is a formalized approach to pain management, assessment, and frequent reassessment/ monitoring of the patient’s state.
• Genetic Modification and Implicit Bias Against People With Disabilities There is also a factor of disabilities that are life-threatening to a child, or illnesses that may be able to be fatal within the first few years of life.
• Impact of Social Darwinism on the Perception of Human Disabilities In addition, connecting behavior such as the likeliness of criminality to genetics is incorrect and damaging not only to the individual but to a community and society as a whole.
• The Social Model of Disability From the examples given, it is evident that disability exists because people with impairments are forced to live in a world that is not accessible to them.
• Music Therapy for Children With Learning Disabilities This review includes the evidence supporting music therapy as an effective strategy for promoting auditory, communication, and socio-emotional progression in children with ASD.
• Disability: Coping and Adjustment By applying a combination pf psychodynamic and behavioral theories to the management of the patient’s perception of themselves in a new setting and with the restrictions imposed on them due to their disability.
• History of Disability and Institutionalisation The legacy of oppression for the disabled still exists in many institutions despite the anti-discrimination legislation supporting their participation in the community’s social and economic life.
• Religious Impact on Disability Experience Faith significantly impacts the experience of disability through the salient religious teachings about the meaning and nature of disabilities. However, according to religion, the primary purpose of disability is to enable the society to learn […]
• Healthcare Professionals: Individuals With Developmental Disabilities The presentation provide an overview of relevant health related issues in individuals with developmental disabilities and how it relates to the group of professionals assigned.
• Short-Term Disability Benefits To sum up, when an employee asks for short-term disability leave, if the firm has a contract with an insurance company, the HR manager should begin by contacting their representatives to investigate the situation.
• Relation Between Disability and Health The analysis of descriptive epidemiological and demographical data is an opportunity to learn more about the distribution of disabilities among Americans and the problems related to the lack of education and health promotion programs.
• Impairment and Social Perceptions: Disability However, there is a need to understand each debate’s value in the context of how they affect the general productivity and social developments of people in communities.
• Health Practitioner Practice: Disability Of great importance in this theoretical study is the impact of aging as well as some of the prevalent factors that affect their condition. Vividly, it is worth noting that the level of disability varies […]
• Protection for Persons With Disabilities and Their Service Animals Additionally, it must be trained to give assistance to a person with disability. Service animals that can be selected to assist persons with disability must be either a dog or a miniature horse.
• Intellectual Disability: Autism In their adulthood, and because of the communication issues that most individuals with autism tend to have, they will naturally have difficulty in finding and keeping jobs.
• Death Penalty: Juveniles and Mental Disabilities Consequently, the Eight Amendment should dismiss the death penalty for this category and state laws must implement recommendations of the National Alliance on Mental Illness, the American Psychological Association, and the American Bar Association that […]
• Limitations and Disability in Multiple Sclerosis The data collected contained demographic information such as the gender, age, hypertension and diabetes mellitus history, and the current usage of prescribed medication among the participants.
• Lifelong Disability and United Nations Convention In this report, I will aim to discuss the discursive significance of UNCRPD, to identify the qualitative aspects of how UNCRPD relates to the themes and motifs, contained in the ‘Labor of love’ video, and […]
• National Disability Insurance Scheme Implementation This paper explores the economic, political, sociological, epidemiological public health factors affecting the implementation of the NDIS, and their effect on the health policy in response to the growing needs of the community.
• The Prevalence, Effects and Challenges of Developmental Disabilities While the increase in the number of people with developmental disabilities is attributed to the rising numbers of the aging population, disabilities may arise in childhood and affect the entire lives of people.
• Disability, Handicap and the Environment: Amundsen’s Argument The limitation appears to follow easily from the reality that disabilities entail species-atypical operation together with the fact that species-typical operation is an efficient way of procuring the products present in the environment in which […]
• Community Disability Awareness Program: Elderly Women With Disabilities A measurable outcome in the program’s success will be a decline in the rate of crime related to elderly women with disabilities.
• The Understanding of Needs of People With Learning Disabilities Despite several problems in the overall design of the strategy that can be used to improve the nursing services for PLD, Drozd and Clinch make a very valid point by stressing the significance of a […]
• Addressing the Needs of People With Learning Disabilities As a student aiming at becoming a Nurse Practitioner, I am currently focusing on the exploration of the options for managing the work of the nursing staff, as well as seeking the opportunities for improving […]
• Judicial Conduct and Disability Act Controversy The following paper addresses the Act from the perspective of its constitutionality, the measures applicable to judges caught in misconduct and the terms of judges’ removal, as well as the terms of appointment.
• Tax Eligibility and Disability Payment Another reason is that the injury he suffers occurred during his service in the army as an employee of the state.
• Discrimination Against Customers With Disabilities The role of the law is to regulate such cases and to provide necessary tools for both sides to prove their point of view.
• “Compounding Mental and Cognitive Disability” by Baldry and Dowse A justification of the statement as briefed in the article is that most of the mentally and cognitive disabled individuals have a higher rate of contact with police officers throughout their lives.
• Elderly Women with Disabilities: Problems and Needs Despite the economic crisis, the cost of medical care has also increased due to the rise in the number of lawsuits filed against the physicians of the state.
• Relationship Satisfaction and Psychological Well-Being Among Greek People With Physical Disabilities In the light of this lack of knowledge, the present study attempts to explore the degree of relationship satisfaction in connection with the way handicapped people deal with the challenges of romantic involvement, as well […]
• Understanding of Disability According to the World Health Organization, impairment refers to any problem that affects the functioning of the body or the body structure, limitation in doing an activity refers to the difficulty that results from an […]
• Communication and People With Disabilities The bathrooms were close to the food court; moreover, there were special handle bars which helped to transfer to the commode and, at this, the height of the commode was almost the same as the […]
• Music Therapy as a Related Service for Students With Disabilities From a neuroscientific perspective, how would music intervention improve classroom behaviors and academic outcomes of students with ADHD as a way to inform policy-makers of the importance of music therapy as a related service?
• Importance of the Social Model of Disability For instance, the public perceives people with disabilities as dependents and burdens to their families and communities. Conclusively, the model suggests solutions that rectify the problems witnessed in the modern and disabling world to remove […]
• Intellectual Disability and Inclusiveness Therefore, the existence of inclusive strategies and the creation of an emotionally friendly environment with participation in group practices is crucial for the happy life of people with ID.
• Professional Practice in Aged Care and Disability The organization has to work with its customers on a partnership level by including them in the planning and assessment of their care.
• The National Disability Insurance Scheme: The Issue of Financing Professionals working within the sphere of Aged Care and Disability Services have to collaborate with many organizations in order to ensure that their clients and patients receive the most benefits from the system.
• National Disability Insurance Scheme The development of NDIS is conditional upon the existence of specific issues related to the provision of healthcare services to disabled people.
• Problem Behaviors in Intellectual Disabilities Community The proposed quality designed study will evaluate the behavior of people with intellectual disabilities over a certain period of time and consequently conclude the primary triggers that influence ID people to demonstrate behavioral issues, including […]
• Sutherland Leisure Center: Professional Practice in Aged Care and Disability Thus, for example, the consideration of Parkinson’s disease by the owner of Sutherland Leisure Center would allow it to benefit from a higher degree of satisfaction of people with this condition.
• Law for People With Disabilities in California The family, the immediate environment of a person with disabilities, is the main link in the system of his or her care, socialization, the satisfaction of needs, support, and career guidance.
• The Resilience Experiences of People With Disabilities The focus of the study was on the participants’ lived experiences, as well as their attitudes towards certain aspects, so the use of interviews as a data collection method is justified.
• Disability and Murder by Caregivers The study of the situation of the family of a person with disabilities in the social structure of society and the possibilities of social mobility is a special section of the disability problem.
• Culturally Aware: Chinese Americans’ Views on Disability Prior to considering the perspectives of the Chinese concerning disability, it is useful to examine the incidence of this health issue among Asian people and some of its peculiarities.
• Intellectual Disability: Causes and Roles Diagnostics needs to be carried out, and a problem in the development of thinking should be revealed with the help of different methods.
• Literature Circles for Students With Learning Disabilities On the other hand, the affected individuals contend that the categorization should be removed to pave the way for the integration of assistances where all needs are attended without classification regardless of the student’s physical […]
• Students With Disabilities: Research Analysis In the process of undertaking this research and practical alignment, there is a misalignment in the inclusion of students with disabilities in the GE class.
• Vocational Expert on Disability Claims While representing a client, an expert has to identify the level of disability of his client and other available jobs in the company.
• School Counselors for Students With Disabilities When the goals are set out, and the professional sphere is chosen, the counselor becomes responsible for the student’s preparation and reception of essential job skills as well as for the communication with the post-school […]
• The Specific Needs of Students With Physical Disabilities The research problem that will be the focus of the planned paper relates to the specific needs of students with physical disabilities or behavioral issues in general classrooms.
• Assistive Technology for Students with Disabilities The United Nations Convention on the Rights of people with disabilities proposes a raft of measures to be undertaken by states to promote the wellbeing of individuals with disabilities.
• Job for Individuals With Physical Disabilities For instance, when a new technology is about to be installed, it will be rational for a number of workers based on departments to be selected and taken through how to use the innovation, such […]
• Language Learning Disability: Language Assessment Plan The C&FD subtest will help to evaluate Oscar’s ability to interpret, recall and execute oral commands that contain concepts of functional language.
• An Audit of the Accessibility of the College of the North Atlantic-Qatar to Individuals With Physical Disabilities It should be noted that structural presentation of the paper is considered to be one of the most important elements of the paper because it allows following the logical thought of the research paper.
• Learning Disabilities and Communication Disorders The students are also being taken through research-based and special education programs and the determination of these disorders is done cooperatively between teachers and specialists like psychologists.
• Children With Disabilities: Supporting Student Behavior The comfortable atmosphere will help the children to attend the class and also provide a good way to mingle with the children with disabilities.
• Dyslexia Disorder: Characteristics and Services Primary dyslexia is a kind of dyslexia disorder which is caused by dysfunction of cerebral cortex of the brain and the condition is not normally affected by change in growth development.
• Americans With Disabilities and Act Amendments Act to the ADA: The Main Issues and Comparison Moreover, the essence of the major amendments to the ADA is disclosed in the article using comparison and implications of those changes for the public use in the spheres of employment and human resources management […]
• Teaching Character Education to Students With Behavioral and Learning Disabilities The purpose of the study was to determine the effectiveness of character education programs implemented in schools on students with behavioral and learning disabilities.
• Plan of the Kickball Game That Involves the Students With the Disabilities While simulating the situation where one is in charge of the PE class, one needs to remember that disability is never inability, thus the students with the disabilities can participate in any games as well […]
• American With Disabilities Amendment Act The main intention of the Act is that civilians receiving benefits or services through the measures of local and state governments may not be differentiated on the fundamentals of the individual’s physical disabilities.
• Disability Discrimination Laws: Workers’ Compensation It is seen that The Americans with Disability Act 1990 was not having a sound definition for what constituted disability and thus the protection that could be claimed or rejected against disability is also a […]
• Parenting a Child with a Disability Study Books Used in Class But the majority of families find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges with regards to their child’s illness or disability.
• Genetic Testing Under Americans With Disabilities Act There is nothing surprising in the fact that the genetically tested employees counted the testing as a violation of their human rights, and The Americans with Disabilities Act was adopted in 1990.
• Americans With Disabilities Act for Employers However, in practice, an employer could still legally discriminate against those with disabilities An employer is obligated to make reasonable accommodations for an employee or applicant if they are ‘otherwise qualified’ to perform the responsibilities […]
• Disability Insurance Plans in Canada Disability insurance is the type of insurance that provides you with financial security when you are unable to work and earn an income due to an accident or illness.
• Gerontology: The Aging and Disability Programs The practitioner is in charge of taking care of older adults, and the administrator is involved in greeting and guiding the clients.
• Teaching Language to Students With Severe Disabilities The objective of this study is to find the different approaches that can be used in teaching phonics and the whole language to students with varied severe disabilities.
• Program Improvement: Developmental and Intellectual Disabilities The government has been keen to present specific resources and support systems that can support the educational and career goals of these individuals.
• Daily Living Skills Training for Individuals With Learning Disabilities Teaching individuals with physical and mental disabilities the life skills needed to compensate for their disadvantages are considered to be the key factor to ensuring a relatively safe, functional, and happy life for those individuals.
• Disability as a Social Problem in the UK’s History A brief historical analysis of the European disability policy of the selected period is needed to show what determined and directly influenced the development of the current disability policy in the UK.
• Art: The Illness Narrative of Invisible Disability The aluminum foil is attached to half of the page and represents that the artificial limb is attached to half of the usual limb, such as a lower leg prosthesis.
• Teaching Adaptive Behavior Skills to Children Suffering From Intellectual Disabilities in the Kingdom of Saudi Arabia This theoretical framework will contribute to the validation of the perspectives used by the teachers to construct their system of beliefs regarding the process of teaching ABS to students with ID.
• Disability Experience Shaped by Society The experience of disability is connected to social perception and the infrastructure that surrounds people with disabilities. Viewing disability as a socially constructed concept provides insight into the attitudes and perceptions of disabled people.
• Life Stages of People with Learning Disabilities In order to proceed with the observation, it is necessary to identify the normal issues likely to be encountered by the representatives of both groups.
• Strategies for Recruiting of Practice for Disability Employment The primary goal of the authors is to discuss the role of HR specialists in the process of “enhancing the employment rate of people with disabilities” and to consider approaches to recruiting, engaging, and retaining […]
• Individuals With Intellectual Disabilities in the Workplace Intellectual disability puts a strain on an individual’s ability to have a social life and communicate with other human beings due to the fact that their capability of adapting is limited to a certain extent.
• Cognitive Disability Resource Sheet The inability of persons with intellectual and developmental disabilities to participate in everyday life limits the reach of health promotion programs, which leads to more health-related issues.
• Lifespan Development and Learning Disabilities in Childhood Parents in this situation would most likely select the authoritative parenting style to manage children because they are left to make their own choices under a guided framework.
• Autism Should Not Be Viewed as a Disability
• Lesly Group of Companies and Disability Issues
• Natural Supports for Individuals With Disabilities
• Ican Bike for Individuals With Disabilities
• The Definition of Disability in Clare’s “Freaks and Queers”
• Children With Disabilities and Parental Mistreatment
• School Counselor Job for People With Disabilities
• Americans With Disabilities in Criminal Justice Agencies
• Rights of Parents of Students With Disabilities
• Strategies for Teaching Students With Mild Disabilities
• Learning Disabilities and Memory Disorders
• Students With Mild and Moderate Disabilities
• Teaching Children With Multiple Disabilities
• Constructivism Theory for Adolescents with Disabilities
• Veterans With Disabilities: Integration and Employment
• Intellectual Disabilities and Higher Education
• Students With Intellectual Disabilities and Their Independence
• Independence of Students With Intellectual Disabilities
• School Event Supporting Students With Disabilities
• Intellectual Disabilities and Limitations for Human Life
• Psychological Testing of Intellectual Disabilities
• Young Adult Children With Intellectual Disabilities
• Disability in Medieval and Modern Societies
• Epilepsy and Learning Disability Relationship
• Access to Disability Services from Various Aspects
• Child and Youth Care Perspective on Disability
• Effective Teaching of Students with Disabilities
• Parenting Children With Learning Disabilities
• Caregivers’ Perceptions of People With Intellectual Disabilities
• People With Disabilities and Their Employment Issues
• Disability Simulations and Their Limitations
• American Deaf Rights History and Disability Act
• Talent-Oriented Intervention for Learning Disability
• Students With Learning Disabilities and Assessment
• Patients With Learning Disabilities: Quality Care
• Talent-Oriented Therapy: Patients With Learning Disabilities
• Involving Adults With Autism Plus Learning Disability
• Age Bias, Disability, Gay Rights in the Workplace
• Sibling Relationships of Children With Disability
• Employment Equity Act: Aboriginals and Disabilities Persons
• People With Disabilities: Local and a Federal Law’ Regulation
• Reading Disability Controversies
• Students With Learning Disabilities: Needs and Problems
• Disability and Diversity in the Workplace
• Students With Disabilities: Characteristics and Strategies
• Instructional Plan in Writing for Learners With Disabilities
• People with Disabilities: The Systemic Ableism
• Writing Disabilities Management in Children
• Learning Disability: What Is Dyslexia?
• Disability Issues in Society
• Developmental Disabilities and Lifelong Learning
• Action Plan for Patrons With Disabilities
• Remediation in Students with Disabilities
• Sexuality with the Disability
• Improving Reading Performance of Students With Learning Disabilities
• Americans With Disabilities Act
• GM’s Committal to People With Disabilities
• Supporting Students with Speech Impairment
• Physical Disabilities and Assistive Technology
• Special Interest Disability and Personal Interview
• Sensory Disabilities and Age of Onset
• High Incidence Disabilities and Pedagogical Strategies for Learning Disabilities
• Exploring Representations of Difference and Disability. Building Blocks or Barriers?
• What Is the Impact of Disability on Children’s Experiences at School?
• Families With Members Who Experience Disabilities
• Recreational Activities for People with Disabilities
• Support Inclusion and Effective Practices for Students With Disabilities
• Peer Buddy Program: Students with Disabilities in High School
• An Action Plan for Serving Individuals With Disabilities – Library and Information Science
• Proper Identification of Students With a Learning Disability
• Internal Campaign Planning for Inclusion of Persons With Disabilities
• Human Rights of People With Intellectual Disabilities
• Adolescents with Learning and Behaviour Disabilities: Graduation and Employment Difficulties
• Hiring People with Disability
• The Problem of Reading of Children With Learning Disabilities
• People With Disabilities
• Culturally Responsive Teaching of Students With Disabilities
• Education Reflection on Multicultural Perspective and Disability Classes
• People With Disabilities and Abuse of People With Disabilities and Criminal Justice
• Americans With Disabilities Act (ADA)
• Reading Disability
• Terminology and Etiquette Discussion Regarding Persons With Disabilities
• People With Disabilities and the Hotel Industry
• The American Disability Act, ADA
• Post Education for Adults With Disabilities
• The Right Attitude Towards Disabled People
• Being Obese as a Disabling Disability: Concerning the Obstacles for Challenged People
• Assistive Technology for Kids with Learning Disabilities
• Inclusion for Students With Severe Disabilities
• The Impact of a Fitness Intervention on People with Developmental and Intellectual Disabilities
• School Disability Program
• Is It Ethical to Abort Based On Genetic Disability?
• Current Trends and Issues in Educating Students With Disabilities
• General Curriculum for Intellectual and Developmental Disabilities Learners
• US Should Ratify the UN Convention on the Rights of People with Disabilities
• Disability Management Practices in Canada
• Myths and Misperceptions of the Disability
• The Individuals With Disabilities Education Improvement Act
• Peer Buddy Programs for Students With Disabilities
• Preschool Teachers’ Actions for Integrating Children With Disabilities
• What Is a Disability?
• How Has Disability Changed Over Time?
• What Special Treatment Should Students With Learning Disabilities Get?
• Can Civilian Disability Pensions Overcome the Poverty Issue?
• How Does Disability Insurance Differ From Health Insurance?
• What Can We Learn From People With Disabilities?
• Does Disability Insurance Receipt Discourage Work?
• How Can States Help Workers Keep Their Jobs After Injury, Illness, or Disability?
• Does Disability Status Modify the Association Between Psychosocial Job Quality and Mental Health?
• How Many Disability Beneficiaries Forgo Cash Benefits Because of Work?
• Does Parental Disability Matter to Child Education?
• How Does Disability Insurance Reform Change the Consequences of Health Shocks on Income and Employment?
• What Drives Inflows Into Disability?
• How Does the Composition of Disability Insurance Applicants Change Across Business Cycles?
• Does Protecting Older Workers From Discrimination Make It Harder to Get Hired?
• How Large Are the Classification Errors in the Social Security Disability Award Process?
• What Happens When the Definition of Disability Changes?
• How Does Social Constructionism Impact Our View of Disability?
• Does the Pension System’s Income Statement Matter?
• How Do Financial Incentives Induce Disability Insurance Recipients to Return to Work?
• Does Community-Based Rehabilitation Enhance the Multidimensional Well-Being of Deprived Persons With Disabilities?
• Why Are the Disability Rolls Skyrocketing?
• How Can Disability Effect Child Development?
• Are School Feeding Programs Prepared to Be Inclusive of Children With Disabilities?
• Should Children With Disabilities Be Mainstreamed or Not?
• What Makes Special-Education Teachers Special?
• Why Does Our Society Provide Vocational Rehabilitation Services for Persons With Disabilities?
• What Is the Importance of Disability Awareness?
• How Do Disabilities Affect People’s Lives?
• What Are the Five Barriers for Persons With Disabilities?
• Dementia Research Ideas
• Down Syndrome Topics
• Eugenics Questions
• Nursing Home Questions
• Orthopedics Essay Topics
• Intensive Care Research Topics
• Chronic Pain Research Ideas
• Diabetes Questions
• Chicago (A-D)
• Chicago (N-B)

IvyPanda. (2024, February 25). 291 Disability Essay Topic Ideas & Examples. https://ivypanda.com/essays/topic/disability-essay-topics/

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IvyPanda . (2024) '291 Disability Essay Topic Ideas & Examples'. 25 February.

IvyPanda . 2024. "291 Disability Essay Topic Ideas & Examples." February 25, 2024. https://ivypanda.com/essays/topic/disability-essay-topics/.

1. IvyPanda . "291 Disability Essay Topic Ideas & Examples." February 25, 2024. https://ivypanda.com/essays/topic/disability-essay-topics/.

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IvyPanda . "291 Disability Essay Topic Ideas & Examples." February 25, 2024. https://ivypanda.com/essays/topic/disability-essay-topics/.

Home / Essay Samples / Life / About Myself / A Day in My Life

A Day in My Life

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• Topic: About Myself

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