Disabilities and chronic illnesses can be significant barriers to daily functioning. For many disabled people, the biggest challenge of living with a disability is not the disability itself, but the way society responds to that disability. Buildings, classrooms, workplaces, and virtually every aspect of daily life are all structured around a presumed norm. Many disability scholars and activists define disability not as a deficit or a specific list of illnesses. Instead, disability is the product of society’s attitudes.
Disabilities and chronic illnesses are common. They call into question the very notion of a normal or healthy person. According to the U.S. Census Bureau, nearly one in five Americans (19%) has a disability. Other estimates put the figure higher. According to the 2012 National Health Interview Survey, more than 25 million Americans (11.2%) live with chronic pain. An additional 40 million (17.6%) experience “severe” levels of chronic pain.
People who live with mental and physical health disabilities may find help in therapy. A therapist can support a client to manage the stress of disability, navigate the effects of disability on relationships, and advocate for their needs.
Chronic illnesses are distinct from acute disease in that they last for a long time. Centers for Disease Control and Prevention (CDC) defines a chronic illness as a disease that lasts longer than a year. The line between the two can be blurry, especially when chronic illnesses lead to acute disease. For example, diabetes is a chronic illness, but diabetic ketoacidosis is an acute syndrome.
Chronic illness and disability are both physical realities and social constructs. A person with infertility might see their condition as a chronic illness if they are unable to have a child. A person who doesn’t want children might not know they are infertile, or might not view their condition as a disease.
Sometimes medical and social norms don’t match a person’s physical experience. For example, though many people say they struggle with symptoms of chronic Lyme disease, many medical professionals don’t recognize this as a “real” diagnosis. Diagnoses like fibromyalgia and chronic fatigue are relatively new. People with these conditions continue to struggle with getting people to accept the legitimacy of their symptoms. Some people spend much of their lives with a variety of painful symptoms, but never receive a diagnosis.
This means that any chronic illness list will necessarily exclude some diagnoses and some symptoms. Some chronic illness examples include:
- Autoimmune diseases such as lupus, rheumatoid arthritis, and type 1/juvenile diabetes
- Metabolic disorders such as diabetes and polycystic ovary syndrome
- Chronic pain conditions such as osteoarthritis and fibromyalgia
- Progressive disorders such as chronic obstructive pulmonary disease (COPD) and amyotrophic lateral sclerosis (ALS)
- Mental health conditions such as depression, anxiety, and bipolar
Chronic illnesses are common. They are also on the rise. In 2000, research by the RAND Corporation found that 45% of Americans live with at least one chronic disease. In 2018, the CDC put the figure at 60%.
In 2009, chronic illnesses accounted for seven out of every 10 deaths, according to the National Health Council.
No single definition can account for all disabilities. Moreover, the same condition can be disabling in one person and a minor inconvenience in another. For example, a person with generalized anxiety disorder may experience chronic anxiety that feels annoying. Another person with the same diagnosis may struggle to leave their house, go to school, or work a job.
The Americans with Disabilities Act defines a disability as a physical or mental health condition that interferes with one or more major life activities. Under this definition, a wide range of conditions can be disabilities. Some chronic illnesses may lead to disabilities. For example, a person with osteoarthritis may have few or no symptoms at first, but eventually develop a severe mobility impairment.
Some examples of disabilities include:
- Conditions that make it difficult to learn or remember things, such as Alzheimer's or Tay-Sachs disease
- Diagnoses that make it difficult to relate to or communicate with others, such as aphasia
- Diseases that affect mobility, such as Ehler-Danlos syndrome and rheumatoid arthritis
- Progressive disorders such as multiple sclerosis (MS)
- Sensory impairments such as blindness
At least 19% of Americans have a disability. According to some definitions of disability, the figure may be much higher. A 2017 study, for example, found that just 17% of nearly 1,000 participants had no mental health diagnoses between the ages of 11 to 38. This suggests that mental health conditions—and the disabilities they may cause—may be the norm.
Discrimination, physical and mental health barriers, and access barriers complicate the lives of disabled people. According to the U.S. Bureau of Labor Statistics, just 18.7% of people with disabilities were employed in 2017.
Ableism is discrimination or prejudice against people with disabilities. Some common forms of ableism include:
- Treating the needs of the disabled as special rights or as nice bonuses, not as mandatory for the well-being of human beings. For example, an employer might demand praise for allowing a blind person to bring their guide dog to work.
- Not considering the needs of the disabled. As awareness of the environmental impact of plastic has grown, some activists have lobbied for a ban on plastic straws. Many disabled people depend on plastic straws to drink.
- Viewing disabled people as a monolithic group, not as a diverse group with members as unique as those in the typically abled population.
- Assuming all disabilities are visible or easily diagnosed.
- Condescending attitudes about disabled people, such as the idea that people with disabilities are uninterested in sex or should not be able to get married.
- Eugenics-inspired beliefs about disabled people, such as believing they should not be able to have children. For centuries, doctors sterilized disabled people without their consent or knowledge. Parents of disabled children sometimes choose to give them birth control without their consent.
- Actively attempting to undermine movements for disability rights.
- Assuming able-bodied people know what is best for people with disabilities. For example, when some restaurants stopped providing plastic straws, some typically abled people responded by telling disabled people that they don’t really need straws, or that having to bring one’s own straw is only a minor inconvenience.
- The unacknowledged assumption that everyone is healthy and has similar abilities. A college professor might insist that all students attend a show at a local arena, ignoring mobility impairments or mental health issues such as agoraphobia and anxiety.
Many disability rights activists emphasize that defining disability as a physical or mental abnormality that interferes with daily functioning stigmatizes people with disabilities. Disability rights are not special rights. They are accommodations similar to the accommodations “able-bodied” people already receive.
For example, all people need to drink water and use the bathroom. Stores make restrooms readily available. Water fountains are omnipresent. Without restrooms or water fountains, a typically abled person might feel disabled, and even begin to exhibit signs of a disability.
Some activists dispute the very notion of disability. They argue that disabilities are differences in abilities, and that these differences may even be beneficial. For example, autistic neurodiversity activists emphasize their unique perspectives and oppose any attempt to label autism as a disability. People who oppose the notion of disability emphasize that society is built around a presumed norm. It is this norm, not physical or mental differences, that leaves some people feeling disabled.
Stereotypes about chronic illness and disability are a hallmark of ableism. These stereotypes render invisible the lived experiences of disabled people. Some common stereotypes include:
- People with disabilities and chronic illnesses are always sick.
- All people with chronic illnesses or disabilities have caregivers or cannot live independently.
- People with disabilities or chronic illnesses lead lives dominated by their condition. They don’t have as many hobbies, interests, political or religious views like typically abled people.
- People with disabilities or chronic illnesses may not understand their own condition, or may need the help of the typically abled to better understand their lives and experiences.
- People with disabilities are not sexual beings.
Examples of successful disabled people are everywhere, showing the diversity of skills and experiences among people with disabilities and chronic illness. Some examples include:
- Stephen Hawking, the legendary physicists with ALS.
- Helen Keller, a deaf and blind activist who helped found the Americans Civil Liberties Union (ACLU).
- John Nash, a mathematician and professor with schizophrenia.
- Ludwig van Beethoven, one of the most well-known composers, who was also deaf.
- Stevie Wonder, a legendary blind musician.
Children and young adults with disabilities face the additional barrier of being dependent on adults to manage and anticipate their needs. They may face discrimination at school, or live with parents who have discriminatory or demeaning ideas about disability.
In educational settings, children with disabilities are protected by a number of laws, including the Americans with Disabilities Act and Individuals with Disabilities in Education Act (IDEA). Under IDEA, children are entitled to an Individualized Education Plan (IEP) that offers educational accommodations to address the child’s unique needs.
Chronic illnesses and disabilities are common among children and young adults. According to the National Center for Education Statistics, 13% of students enrolled in public schools in the 2015-16 school year received special education services.
Asthma is the most common childhood chronic illness. Some other common chronic illnesses include juvenile diabetes, epilepsy, congenital heart problems, and cerebral palsy. Depending upon how chronic illness is defined, 15% to 18% of children have a chronic illness.
Very young children may not be able to understand their condition, and may feel frustrated when their abilities do not align with those of their peers. Older children may feel stigmatized, fear bullying, or be frustrated when disability constrains their independence.
Books on disability for children may help parents begin a positive discussion about disability, the social meaning of disability, and the unique insights and abilities that sometimes come with disability. Therapy can help children better understand disability and advocate for their own needs. Family therapy can help families support a child with a disability.
People with lifelong disabilities often find communities of like-minded people and grow to see their disability as a part of their identity. Adults who suddenly acquire a disability may harbor ableist views that make life with a disability more difficult. They might not know any disabled people. They may mistakenly believe that a disability has to constrain their choices and options. The sudden loss of physical or psychological abilities may feel like a death. It can be traumatic, causing relationship stress, depression, anxiety, and fear.
- About chronic diseases [PDF]. (2014, July 29). Washington: National Health Council. Retrieved from http://www.nationalhealthcouncil.org/sites/default/files/NHC_Files/Pdf_Files/AboutChronicDisease.pdf
- A guide to disability rights laws. (2009, July). Retrieved from https://www.ada.gov/cguide.htm
- About chronic diseases. (2018, October 24). Retrieved from https://www.cdc.gov/chronicdisease/about/index.htm
- Children and youth with disabilities. (2018, April). Retrieved from https://nces.ed.gov/programs/coe/indicator_cgg.asp
- IDEA and the IEP process. (n.d.). Retrieved from https://www.smartkidswithld.org/getting-help/know-your-childs-rights/idea-iep-process/
- Kaplan, D. (2000). The definition of disability: Perspective of the disability community. Journal of Healthcare Law and Policy, 3(2), 352-364. Retrieved from https://pdfs.semanticscholar.org/1cca/0ba996e9ef32a935edf6725068698cb4813f.pdf
- Nearly 1 in 5 people have a disability in the U.S., Census Bureau reports. (2012, July 25). Retrieved from https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html
- NIH analysis shows Americans are in pain. (2015, August 11). Retrieved from https://nccih.nih.gov/news/press/08112015
- Persons with a disability: labor force characteristics--2017 [PDF]. (2018, June 21). Washington: U.S. Department of Labor Bureau of Labor Statistics. Retrieved from https://www.bls.gov/news.release/pdf/disabl.pdf
- Schaefer, J. D., Caspi, A., Belsky, D. W., Harrington, H., Houts, R., Horwood, L. J., . . . Moffitt, T. E. (2017). Enduring mental health: Prevalence and prediction. Journal of Abnormal Psychology, 126(2), 212-224. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5304549/
- The growing crisis of chronic disease in the United States [PDF]. (n.d.). Partnership to Fight Chronic Disease. Retrieved from https://www.fightchronicdisease.org/sites/default/files/docs/GrowingCrisisofChronicDiseaseintheUSfactsheet_81009.pdf
- Wendell, S. (1997). The rejected body: Feminist philosophical reflections on disability. London: Routledge.