Is an “identity model” replacing the charitable, medical, and social models of disability?

The next stage of evolution in how the global community views disability

Sheri Byrne-Haber, CPACC
Jan 28 · 6 min read
Ouroboros of four different disability models Charitable; Medical; Social; and Identity
Ouroboros of four different disability models Charitable; Medical; Social; and Identity
Image custom created by the author cannot be reused without permission and attribution

Part one of a three-part article. See part two on language choices associated with disability/accessibility here.

Language is a strange and powerful thing. So are sociological models for traits that describe the six completely disparate groups of people with disabilities, including:

  • neurodiversity

It is hard to get all these different groups under a single sociological model umbrella. This article is my take on defining the pros and cons of the existing models, a guess as to where I think these models are headed. The next part of this article will talk about language use best practices centered around these models.

Someone getting a bucket of ice water dumped on their head to raise $$ for ALS research in a park with onlookers
Someone getting a bucket of ice water dumped on their head to raise $$ for ALS research in a park with onlookers
Photo by Major Tom Agency on Unsplash

The “charitable model” of disability

In the charitable model of disability, people with disabilities are treated as objects of charity and pity. The community treats people with disabilities as incapable of helping themselves. People with disabilities are an obligation and a burden, requiring charitable resources from family or community support.

  1. In the United States, the charitable model of disability is epitomized by the era of the “freak show.” Freak shows are organized, for-profit exhibitions of people with physical, mental, or behavioral rarities popular from the 1840s to 1940s.

I have no problem with people raising $$ for charitable research in the areas of ALS or something a little closer to home to me, which is Type 1 Diabetes. I have an issue with charities portraying people with these diseases as tragic having no control over their lives because of these terrible diseases. Fundraising campaigns frequently blur these lines to drum up donations.

person in white lab coat with blue gloves overflowing in medications
person in white lab coat with blue gloves overflowing in medications
Photo by Kendal on Unsplash

The “medical model” of disability

As medical care improved, the charitable model of disability evolved into the medical model of disability. People with disabilities were viewed as ill and needing to be cured through medical intervention. People with disabilities weren’t necessarily consulted or even involved at a meaningful level in their care. The “experts” were members of the medical community. The focus under this model is making the community feel more at ease with the person with the disability, not necessarily making the environment more accessible. Any person with a disability who didn’t desire medical treatment was seen as someone who didn’t want to help themselves and by implication, not worthy of assistance.

The medical model of disability has severely adversely impacted the Deaf community. Deaf individuals are not interested in “fixing” what they don’t see as a problem. However, the most public example of a single individual suffering from others' decisions is probably Rosemary Kennedy. When she was 23, her father arranged for a lobotomy to treat seizures and mood swings. The procedure left her incapacitated and unable to speak for years. She was hidden from the family for decades and lived in an institution for the remainder of her life.

Middle Eastern man pushing woman dressed in an abaya in a wheelchair in crowded city setting
Middle Eastern man pushing woman dressed in an abaya in a wheelchair in crowded city setting
Photo by mostafa meraji on Unsplash

The “social model” of disability

The social model of disability is rooted in human and civil rights. This model emphasizes that the barriers faced by people with disabilities originate from an inaccessible society, not the medical condition causing the disability. The social model has its roots in the protests leading up to the adoption of the Americans with Disabilities Act in 1990. The cornerstone of the social model of disability is removing environmental and attitudinal barriers that prevent people with disabilities from having equal access to societal opportunities.

The ultimate goal of a person with a disability under the social model is the equal opportunity to attend school, gain employment, and participate in community activities integrated with people without disabilities using accommodations or modifications at their choice as necessary. Under this model, the “ownership” is not of the disability but choice in dealing with the disability. That choice always resides in the hands of the person with a disability unless they are legally not competent to make their own decisions.

The social model of disability evolved about the same time as People First Language or PFL. PFL revolves around emphasizing people, by putting them first, over any disabilities they may have. PFL choices include examples such as:

  • using terms like “person with hearing loss,” not hearing-impaired
Cartoon hand holding identity card
Cartoon hand holding identity card

The “identity” model of disability

As disability has become more of an intersectional identity, a new model seems to be forming, which I call the “identity model of disability.” I have seen an increasing number of requests for people who are requesting that they:

  1. be identified as disabled, not as a person with a disability

The people who typically make these requests (and this is a small sample, and I include myself as part of the sample) appear to be people who have integrated their disability into their identity. Incorporating something into your identity takes time. Therefore, they are also typically people who either have congenital disabilities or have an acquired disability that they have experienced for an extended period. These are people who want to be identified as disabled or autistic and do not want to be referred to using PFL.

I put disabled/determined person in my LinkedIn title after my pronouns to inform people of my disability language preferences. Yes, I know disabled/determined person isn’t a pronoun. It is, however, an essential part of my identity. I love the UAE phrase for people with disabilities, which is “persons of determination.” If you ask any single person who knows me the best adjective to describe me, determined is a word that will show up towards the top of the list, guaranteed.

The main difference between the Social and Identity Models of disability that I perceive is people who follow the identity model seem to be fearless in holding others accountable for the societal barriers that discriminate against us.

  • Under the social model, I might tell someone, “Hey, there are stairs here, I can’t get by.” Actions after this are varied, ranging from doing nothing to asking for help to filing a complaint.

People who use the identity model of disability are comfortable with their disability and demanding equal access for themselves and everyone else.

Please continue on by viewing part two of this article on what language to use around disability/accessibility concerns.

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Sheri Byrne-Haber, CPACC

Written by

Blogger, disability advocate, nerd. Bringing the fire on ableism. A11y Architect @ VMware. Wheelchair user w/ a deaf daughter. CS, Law, and Business background

The Shadow

We publish inspiring stories about different topics for a productive and entertaining life

Sheri Byrne-Haber, CPACC

Written by

Blogger, disability advocate, nerd. Bringing the fire on ableism. A11y Architect @ VMware. Wheelchair user w/ a deaf daughter. CS, Law, and Business background

The Shadow

We publish inspiring stories about different topics for a productive and entertaining life

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