Redefining Disability Challenge – Question 20

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twentieth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.

Here is this week’s question:

Do you have preferred language when it comes to disability?

I have been waiting for the “language question.” As a speech-language pathologist, I recognize the importance of language. As a person with a disability, I am particularly sensitive to language used to describe me and others like me who live with disability. As you read this post today, please remember I am writing from my point of view and not on behalf of all people with disabilities. Language is important to many, and there is more to using respectful language than just being “politically correct.”

The language used to refer to disability varies around the world. Like many Americans, I favor person first language, or language which places the person before the disability (a person with a disability, not a disabled person; a child who is diagnosed with diabetes, not the diabetic child). Not every disability group prefers this language, so it is always best to ask an individual what language is preferred, and try your best to honor their preference.

I support person first language, particularly in the media, because of the definition of language itself. Language is a shared, symbolic code used to express a culture’s ideas, values and beliefs (thank you Dr. Mark Ylvisaker for drilling that into my head during your 8:00 AM Introduction to Language Disorders course!). If you follow that definition of language, then the language used when talking about disabilities is important in framing and reflecting how we perceive disability. I support person first language because I want to be seen as a capable person first, not a disabled person. If we consistently put the disability before the person when describing someone, what do we value or believe about them?

Webster’s Dictionary defines disabled as “incapacitated; unable to work.” I am not a disabled woman. My woman-hood works just fine. I am not a disabled person. My person-hood is intact. I am not incapacitated. I have full time employment, and I also work 49 hours each week managing my personal care team. I live in a country with laws such as the Americans with Disabilities Act which grant me equality and access, and I am able, not disabled.

Now, there are times when I refer to myself as a “disabled person” and usually these times occur when I am referencing the social model of disability which I wrote about in my response to the second question in this challenge seriesMost of what I wrote in that post can be applied to this challenge question regarding language since a person’s view of disability often influences the language he or she uses when talking about disability. If you missed that post, I encourage you to go read it now for a more thorough discussion of the social model of disability. I’ve taken some of it for use here.

I live in a culture which for decades (centuries?) has viewed disability through a medical model. The medical model of disability views disability as a health condition (usually a deficit or abnormality) which is dealt with by medical professionals. The “problem” of disability is one to be “fixed” or “cured.” A person is often described in terms of what they cannot do.

Did you notice all of the negative language in my description of the medical model? Often, viewing disability through a medical model results in pity for the person “afflicted with” or “suffering from” an impairment. If a person is not “normal” as defined by doctors or professionals, it is assumed their quality of life must be less than those without disability. People with disabilities are encouraged to “overcome” and must adjust to “mainstream” society because the disability is the person’s problem. Disability is negative, and a person’s experience is often described using the words or phrases I have put in parentheses.

The social model of disability contrasts to this view. The social model does not deny an impairment and the impact it has on a person. But disability is viewed as the result of interactions between a person living with impairments and the barriers they encounter in the social environment. In this model, it is society which needs to change to accommodate people living with impairment instead of the individual needing to accommodate to a society which does not grant them equal access. I don’t need to be able to climb steps – the business owner who wants my money must make their business accessible to me.

If people with disabilities are viewed with pity or as objects of charity (medical model) instead of individuals with rights who are able to make decisions for our own lives, able to give informed consent and be active members of society (social model), we will never be treated as equals. Language can influence how people with disabilities are viewed by society.

I am particularly attuned to the language others use to describe me. If I am repeatedly described in newspaper articles as “wheelchair bound” or “disabled” (even when I ask reporters to use person first language), how do you the reader perceive me? How should I feel if I overhear someone describe me as “an invalid?” Yes, there are people who still use that word. Say it both ways. Invalids are invalid.

My friends and family offered different words to describe me. Positive words, like “independent,” “intelligent,” “outgoing,” “articulate,” and “caring.” Capable words, like “talented,” “creative,” and “musical.” I know which language I prefer.

When I conduct presentations and trainings on disability etiquette, I often hear questions from participants who are fearful of offending someone or using insulting language. Language, like culture, is always changing and evolving. Many words which were widely used by previous generations are considered offensive and thankfully are not used today. I recognize this may not make it easy for someone who is not as involved in the disability movement.

If you are looking for some basic disability etiquette, United Spinal Association has a guide on their website. As a general rule, I think it is best to try to avoid language which has historically been, or is currently, used to marginalize or oppress people with disabilities. Try not to make assumptions. If you are going to ask a person with a disability about language (or anything else), always speak directly to the person and not to the person’s friend, assistant or interpreter.

And whatever you do, never, EVER say the “R word.”

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9 thoughts on “Redefining Disability Challenge – Question 20

  1. So when is the medical community going to catch up? Don’t you still have to prove the need for assistance every few months through Dr’s visits, DSS updates, or various hoops to jump through just to confirm that there is still a “disability”?I agree. I like the motivated, determined, focused, talented, loving, etc descriptions much better., and you are all of those things and more.

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    • Yes – I still have to play the game and jump through the hoops. Thankfully, I have worked with the local contacts responsible for my reassessment and they understand my stance – almost treat me as an equal partner in my care all of the time! And, thank you for the compliment. See you soon!

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