Research has now shown that person first language increases stigma. I haven’t read the research. I don’t need researchers to tell me what I already know from personal experience. Although I have not read it, I am pleased that it exists. There are many abled people who won’t listen to disabled people but will consider what research tells us and if that is the only way to convince them not to call me a person with autism then I am pleased about that. In professional and academic settings this research will be useful and I hope that it helps us progress to a more anti-oppressive way of referring to disabled people. I think that the research is important and necessary.
I often talk to people who advocate for person first language. Some of them are people with disabilities and I respect their right to self-identify in any way they are comfortable but most of them are abled. The reasons they give are that we should “put the person before the diagnosis,” “see the person not their disability,” and remember that a disabled person is a person. Essentially they are saying that we must use this language in order to see disabled people as people and we must distance disabled people from their disabilities. These statements are in themselves pretty stigmatising.
“Put the person before the diagnosis.”
The use of the word diagnosis is always a concern to me because it erases the many people who do not have access to diagnosis. I have fibromyalgia and it took me years to get my diagnosis. I was still disabled before the diagnosis and no one questioned me being disabled because physically I could not do stuff. It was obvious that I was disabled. But for any neurodivergence there is always the issue of people not believing that someone is autistic/depressed/ADHD/(insert any other neurodivergence) unless they have a diagnosis. The emphasis on diagnosis automatically takes us away from the social model and puts us firmly within the medical model (and I don’t think there is any disagreement around the medical model being oppressive).
“See the person not their disability.”
This one brings up all kinds of issues for me. It reminds me of the abled people who will look everywhere except at a disabled person because they are uncomfortable seeing disability. Another issue I have with this statement is that you can’t see a person without seeing their disability. You can’t see me if you separate me from my autism because so much of me is influenced by being autistic. If you don’t see my physical disability how are you going to make sure that things are accessible for me? If you don’t see my disability you can cause me real physical and emotional harm. I have a friend who often leans on my shoulder when she comes to my desk at work and I have to remind her that it’s painful when she does that. She often tells me that she forgets. Essentially she does not see my disability and often hurts me as a result.
“A disabled person is a person.”
You only need to remind yourself that a disabled person is a person if you don’t see us as actually being people. The issue here is not in the language used but in the way that disabled people are viewed. We are viewed by many as being less than human. When I worked in a day centre people used to tell me that autistic people didn’t feel pain and that was less than a decade ago. When I advocate for identity first language, it’s not because I don’t believe that there are people who don’t see disabled people as people. I know that we are dehumanised by many, that we are seen as less than, inferior, unworthy. I know the way that many people see us and if you need to remind yourself that disabled people are people then you are probably one of the people who don’t see us as human.
I have always known that person first language increases stigma because the whole premise is stigmatising and a real challenge in disability is that these people who hold these awful views are the ones who are “advocating” for disabled people. People who advocate for person first language see disability as being inherently negative so of course it increases stigma. It’s a whole way of speaking based on the idea that being disabled is a bad thing.
Distancing someone from their diagnosis is only desirable if they are diagnosed with something bad. So of course you would want to say you had cancer rather than that you were cancerous. This is why I say that I have fibromyalgia, I have chronic pain, I have a chronic illness. These are conditions I want to distance myself from (which may not be the same for everyone with those conditions). When you apply that to things that I consider positive, like autism, or to my identity (disabled) then of course that increases stigma. I am a disabled person. I am a disabled person because I experience disablism, I am a disabled person because I am part of a community, I am a disabled person because I choose to identity that way and if you try to separate me from that then you are saying my identity is bad, my community is negative, and my experience of disablism is my own fault. Disabled identities are built on overcoming oppression and to strip me of that identity by telling me it is something I have, not something I am, disempowers me.
So of course person first language increases stigma. How could it not?
Brooke Winters 