As I progress through OT school, I am learning so much more than just the physical parts of the body, specific intervention plans, and how to evaluate clients. Lest you be concerned that I’m getting a subpar OT education, I will quickly reassure you that I am definitely learning these things! However, one of the things I appreciate most about my program is that it also places a heavy focus on developing therapists who are thinkers about issues in healthcare, disability culture, and practice that go beyond individual clients and clinic walls.
During a recent class, we had a thought-provoking discussion about people’s experiences of illness or disability, portrayals of people with disabilities in popular media, and society’s (and our own) attitudes toward and treatment of people with disabilities. As an occupational therapist, I will be working with people, children, and families who do not just have a diagnosis, but who have highly unique and varied lives that continue after or in spite of that diagnosis. For some, their lives will be defined by their diagnosis. For others, it is simply a label that opens the door to much-needed services. For still others, the diagnosis might be preventing them from accessing certain places or services. Whatever the situation is for my future clients, I will need to be a holistic occupational therapy practitioner who understands how a person or family’s experience of disability affects more than just their physical body.
During the class discussion, I was introduced to the Social Model of Disability, and it has definitely given me pause and made me rethink my understanding of the experience of “disability,” disability culture, person first language, and what these things can mean to different people, groups, and stakeholders.
For readers who may be unfamiliar with these terms, I will define them briefly here.
Person/People First Language:
- “People-First Language emphasizes the person, not the disability. By placing the person first, the disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. People-First Language is an objective way of acknowledging, communicating, and reporting on disabilities. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability.
Our words and the meanings we attach to them create attitudes, drive social policies and laws, influence our feelings and decisions, and affect people’s daily lives and more. How we use them makes a difference. People First Language puts the person before the disability, and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself.” (The Arc, 2015)
The Social Model of Disability (Sociological Theory)
- “The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.
Disabled people developed the social model of disability because the traditional medical model did not explain their personal experience of disability or help to develop more inclusive ways of living.
An impairment is defined as long-term limitation of a person’s physical, mental or sensory function.” (Scope.org, 2015)
The Social Model of Disability Compared to the Medical Model of Disability
- “The social model of disability says that disability is caused by the way society is organised. The medical model of disability says people are disabled by their impairments or differences.
Under the medical model, these impairments or differences should be ‘fixed’ or changed by medical and other treatments, even when the impairment or difference does not cause pain or illness.
The medical model looks at what is ‘wrong’ with the person, not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives.” (Scope.org, 2015)
So…Which One is Right?
Although I still believe person first language is important and that it does add an element of humanness and a shared understanding of people as people – and not conditions or diagnoses – first, I am also fascinated by the social model’s theory about the “disablement” of people by society’s attitudes and actions.
Writer Lisa Egan has a very eloquent, impactful article at xoJane describing her understanding of the social model and why she feels like it is the best description for her life in London:
“Most people look at the word “disabled” and assume it means “less able.” It doesn’t. It means “prevented from functioning.” When I turn the wireless connection off on my computer, I get told that the connection has been “disabled.”
Does this mean that my wifi has suddenly become less able or broken? Has my wifi acquired a disability? Of course not. It has been prevented from functioning by an external force. In a very similar way to how I’m disabled by bus drivers that just won’t stop if they see me — a wheelchair user — waiting at the bus stop…As a person with a mobility impairment I am disabled by steps, stairs, escalators, being denied computer access as I can’t write by hand, inaccessible housing, and so on.”
Her essay goes on to describe how she struggled her entire life with feeling as if the challenges she faced – such as being left out of fun elementary school events – were her own fault for having a body that was not the same as everybody else’s. However, she says that learning about the social model of disability at 17 “radically changed how I thought about my own body.”
I have few friends with disabilities, so Lisa’s essay was a perspective I had never heard before. And while it might not apply to every person, I think that understanding this view of the world is still important, as it can help me when I am advocating for and communicating with future clients, helping create spaces that enable rather than disable, and engaging in important conversations about every person’s right to be able to do whatever it is that they need and want to do.
So…What Should You Say?
With all of the ongoing discussion and debate about the correct terms to use, the fact is that often it can seem that no matter what you say it’s the wrong thing. However, my plan going forward with all of this knowledge is to stay true to my OT roots and put the client’s desires first.
Many people with disabilities (or disabled people, if you prefer the language of the social model!) may not be particularly invested in the language being used as long as it is not blatantly offensive, but many other people are. Read the blog posts below for some compelling perspectives from people in the autistic or Deaf communities who experience their “disabilities” as part of their identities and who often don’t support person-first language for various reasons.
- Autistic Chick Blog – Disability First Language
- Autistic Hoya – The Significance of Semantics: Person-First Language: Why It Matters
- At the end of this post there are many links to other discussions on the topic of person-first language as it applies to autistic people.
- Autistic Advocacy – Identity First Language
- National Association of the Deaf – Community and Culture
Ultimately, I hope that instead of awkwardly dancing around the language issue or trying out different phrases and seeing which ones get me the best response, I will simply be candid with future clients and ask them what kind of language they prefer, as appropriate. I am sure there will be mistakes made, and I will put my foot in my mouth more than once, but I hope that my efforts to be client-centered and culturally informed will be interpreted as acts of support for whatever my clients are going through.
For More Information
Syracuse University’s Disability Cultural Center has a fantastic webpage and guide to the language used in discussions of people with disabilities. They also provide links to many other helpful sites, books, and articles on the topic.