The last decades have been marked by a shift in thinking. From viewing disability as a personal problem that needs to be cured (the medical model), we have come to see the source of the problem: the society’s attitude towards persons with disabilities. This means that we have to act collectively as a society in order to remove the barriers that hinder persons with disabilities from living among us and contributing to our society, and to fight against their isolation in institutions or in the backrooms of family homes. Finally, there has been a shift from welfare policies and charity as the only tools for dealing with disability, to an approach based on human rights and equality.

Lucy Series, 2020

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) was the first human rights treaty to be developed by disabled people, for disabled people. Adopted by the UN in 2006, the Convention embodies and enshrines key tenets of contemporary disability scholarship and activism—from “nothing about us without us” to a social understanding of disability (Series, 2020).

The CRPD is a landmark achievement for disability advocacy and human rights. It represents an inflection point in our understanding of what it means to be a bearer of rights, and the role of states and the global community in promoting, protecting, and ensuring those rights (Series, 2020).

In the United States, 36% of healthcare expenditures are related to disability. In the healthcare system, explicit and implicit biases toward people with disabilities are pervasive. Significant health inequities exist for and among disabled people, which relate at least in part to discrimination, inaccessibility, and other barriers that disabled people experience throughout health systems and society (Lundberg and Chen, 2024).

Comorbidities can be complex and combined with insufficient research and lack of disability-specific content in medical curricula. Providers may lack the experience and training to adequately address the needs of people with disabilities. For healthcare providers, lack of experience and discomfort communicating with people are major barriers to the delivery of good healthcare.

Did You Know. . .

In some cultures, a disability is attributed to spiritual or otherworldly forces, such as sorcery, parents’ “sin”, punishment, or a test of faith. Community awareness programs aimed at explaining real causes of disabilities can reduce stigma and prejudice against individuals and families (Jansen-van Vuuren and Aldersey, 2020).

10.1 Intellectual and Developmental Disabilities

People with intellectual and developmental disabilities experience a great deal of stigma that can limit social inclusion and increase disparities compared to the general population. Stigma involves discrimination, prejudice, and exclusion in various forms and often affects how one is accepted or can participate within a community (Jansen-van Vuuren and Aldersey, 2020).

Compared to the general population, people with intellectual disabilities have a higher prevalence of physical conditions, especially neurological disorders, sensory impairments, obesity, constipation, and congenital malformation. Low awareness of the disease epidemiology may expose this population to underdiagnosis, misdiagnosis, inappropriate pharmaceutical interventions, and missed opportunities for preventative healthcare (Liao et al., 2021).

Cultural values, beliefs, and practices influence how people with intellectual and developmental disabilities are treated. For healthcare providers, understanding the stressors that people with intellectual and developmental disabilities experience daily is important. Helping clients develop practical skills, such as accessing public transport, managing finances, and using assistive technology increases independence and reduces stigma.

Individuals with intellectual or cognitive disabilities such as dementia, autism, or other developmental conditions are often deemed to lack mental capacity. These people often experience decisions made by others regarding their residence, care, and other broad elements of their daily life (Reed-Berendt, 2022).

For anyone with a disability, developing social and personal skills, learning work skills, and building self-esteem, self-identity, and assertiveness reduces the feeling of “otherness” and enhances a person’s ability to function and participate within society (Jansen-van Vuuren and Aldersey, 2020).

10.2 Institutionalization

The term "institution" means any facility or institution which is owned, operated, or managed by, or provides services on behalf of any State or political subdivision of a State. This can include facilities for persons who are mentally ill, disabled, or retarded, or chronically ill or handicapped (DOJ, 2023).

The National Council for Disability (NCD) defines institutions as places that only include people with disabilities, include a facility more than 3 people who did not choose to live together, and do not permit residents to lock the door to their bedroom or bathroom. These institutions were, and remain, facilities operating for the purpose of housing people with disabilities (DeLano, 2023).

Additional features of an institution include:

• limiting visitors
• restricting entry and exit
• enforcing sleep and mealtimes
• restricting religious practices and beliefs
• restricting sexual preferences or activities
• restricting access to phone and internet (DeLano, 2023)

Deinstitutionalization and the development of a strong community-based system that helps people with intellectual or development disabilities live in the community is both morally and ethically the right thing to do. It is also a civil rights issue. The law supports the individual right to live in the community (NCD, 2012).

In crafting the Americans with Disabilities Act of 1990 (ADA), Congress found that “the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals” (NCD, 2012).

10.3 Ableism

Ableism is discrimination or prejudice against people with disabilities. It is based on the belief that non-disabled people have more value than disabled people and that “typical” abilities are superior. Ableism assumes that disabled people require “fixing” and defines people by their disability.

10.3.1 Avoiding Ableist Language

Words have power and ableist language is both harmful and unnecessary. Ableist words have become an established part of society’s vocabulary and changing the use of these words will have to be an ongoing process that we will have to work together to change (NLM, 2022). 

Using ableist language both internalizes and reveals our unconscious biases. Ableist language evolves just like slang, with phrases catching on and becoming widely accepted parts of our vocabulary. Making a “dumb” choice, turning a “blind eye”, acting “crazy” or “falling on deaf ears” are widely used phrases. Using these kinds of terms and phrases reinforces negative attitudes and promotes inaccurate descriptions of what having a disability means (NLM, 2022).

Some tips about ableist language (NLM, 2022):

• Avoid using disability as an insult.
• Work with friends, family, and coworkers to recognize and replace ableist words.
• Avoid euphemisms such as differently abled, physically challenged, mentally challenged, handi-capable, or special needs.
• Avoid identifying a person based on the equipment they are using (the cane lady or the hearing-aid guy).

10.3.2 Examining the Use of Ableist Language

Although there is a need to continue to examine ableist language within healthcare, there have been some positive changes. A study involving 22 disabled participants highlighted the positive encounters they experienced during interactions with medical professionals. Participants reported feeling more empowered with healthcare experiences involving active listening, practitioners taking the time to understand and address their priorities, and the presence of accessible and inclusive environments (Feldner et al., 2022).

These experiences ranged from meeting individual access needs to creating universally designed spaces and interactions that benefit a wide variety of people. For example, one participant described the nuances of care in a provider-patient relationship and its impact on personal conceptualizations of health, noting:

The biggest factor in a positive healthcare encounter that went well, was that I'm not only being cared for but that I'm cared about on an almost personal level with the doctor. I really like it when doctors are okay to just chat with me for a minute about anything or make jokes. …And, if I feel like I'm cared about, I feel better and I'm as healthy as I feel, right. And, I think it actually has positive impacts on whatever health issue that I'm dealing with at the time. (Eli, Undergraduate Student) (Feldner et al., 2022)

Other participants described positive interactions when providers (Feldner et al., 2022):

• Used direct communication, and acknowledgment of expertise.
• Provided access free parking, accessible scheduling services, and quiet examination and treatment spaces.
• Advocated for their needs.

10.4 Communicating with People with Disabilities

As with all interactions within the healthcare system, being respectful of the individual is critical. Use “people-first” language that emphasizes the person rather than the disability. Talk in the same way you would for a person without a disability while considering differences such as mobility limitations, visual or hearing loss, speech and language disabilities, cognitive changes, or mental health difficulties.