Of Course Person First Language Increases Stigma

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?

 

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Things I don’t want to hear from allistics: The autism representation was good.

Good representation to me is accurate representation that does not reinforce harmful stereotypes or ideas about a group of people. There is probably more to good representation than this but when I consider if I am well represented this is what I think of.

Recently there has been lots of talk about representation of autistic people in Atypical. Many autists feel the representation is mixed, with elements that they relate to and other parts that are literally taken from the DSM. Other people feel that the representation is just awful and others feel more positive about it. It should be expected that there will be a range of opinions among autistic people and I think that is fine. We are not a monolith, we are not a hive mind, we are individuals with individual experiences of autism that will inevitably be impacted on by our other identities.

I think that sometimes things can be accurate but uncomfortable. Atypical is about a white male autist who wants to find someone to have sex with. Many autists have raised concerns about the misogyny in Atypical and the way that autism is used to excuse abusive behaviour. We know that there are male autists who are misogynistic, and we know that there are people who hide behind their autism and use it to excuse their behaviour. So if Atypical is about a misogynistic autistic man I would say that is pretty accurate rep.

The issue for me is not about it being accurate but about this being the story that Netflix chose to tell. BAME (black, Asian, minority ethnic) autistic people are almost never represented. I know from my day job the additional barriers to getting diagnosed that BAME autists face. It would have been wonderful if Netflix had decided to make a show about a BAME autistic person. We know that there is a misconception that only boys can be autistic. Imagine the impact of portraying an autistic girl. I don’t have stats but I’m pretty sure there is a higher proportion of non-binary and binary trans people in the autistic community but we never see them on television. There are white autistic men who are not abusive and misogynistic and they need representation too. There is no positive representation of them either and Atypical doesn’t change that.

If an autistic writer and director got together and decided to make a critical show about the misogyny in autistic communities, I would be behind that 100%. It would be uncomfortable viewing for many reasons but it would be valuable to the community. This is an issue we need to address. But that isn’t what Atypical is.

So representation is complex. I can’t write that Atypical is bad representation of autism nor that it is good. I can say that I think there are elements they got right and other elements that just reinforce stereotypes. I can say that there is ableism that they never addressed (perhaps not meaning to present it as ableism) and that allistics have clearly not picked up on this ableism.

These conversations, around representation of autistic people, should be had among autistic people. I am absolutely here for autistic people who say they identified with the main character in Atypical (as long as it’s not his abusive behaviour they identify with). I identify with Sheldon Cooper to an extent and he is all kinds of problematic. I reluctantly support parents of autistic people who feel represented by the show. I say reluctantly because a show about autism should not centre family members and if there was a show to be made for families of autists it should be made by autists and used to challenge the ableism within families. What I’m not here for is allistic people saying that it’s good representation of autism.

If the autistic community can’t agree that Atypical is or isn’t good representation, what makes allistic people think they are qualified to decide? It takes all kinds of privilege and arrogance to think that you can speak for a group to which you don’t belong. Many of the allistics I have found on Twitter claiming it is good representation do not seem to have any connection to autistic people and I can only conclude that what they mean is that their knowledge of autism is based on stereotypes and that because atypical portrays autism in the stereotypical way that they are used to they believe it to be accurate.

 

WriteDis Questions

  1. Introduce yourself! What’s your name? Are you disabled? What do you write?
  2. What are you working on at the moment? Does it have disabled characters?
  3. How long have you been writing for? What point are you at in your career? (Published, querying, still working on your first WIP?)
  4. Do your impairments make writing more difficult?
  5. Do you write/have you written disabled characters? Why or why not?
  6. Do you think disabled characters are more difficult to write?
  7. What do you do to make sure that your representation isn’t harmful?
  8. Disabled people-What do you want abled people to know before they write a disabled character? Abled people-any questions for disabled people?
  9. Is there anything in regard to disability that you think should never be written?
  10. How do you research impairments you don’t have? Any good resources?
  11. What disabilities would you like to see more representation of?
  12. Do you use any tools for writing that disabled (and abled) writers might benefit from?
  13. Are you a member of any writing groups? Are they accessible? Share good and bad experiences so that we can all learn how to make our events more accessible.
  14. Have you attended writing conferences? What made them accessible/inaccessible?
  15. Do you think the online writing community is inclusive of disabled people? What can we do to make it more accessible?
  16. As a disabled writing community what can we do to be more intersectional? 
  17. Tell us about one of your disabled characters.
  18. Share a line from your WIP about disability
  19. Where do you write? How often do you write?
  20. Do you think the publishing industry is accessible to disabled writers? Is there anything you’ve struggled with because of your disability?
  21. What do you think agents and publishes can do to make the industry more inclusive of disabled people?
  22. What can we do to support disabled writers?
  23. Have you published anything with a disabled character? If not, any recommendations of books with good rep? Share links!
  24. Tell us about one of your disabled characters.
  25. Have you made any mistake when writing disability? What did you learn from them?
  26. Are there any disabled characters that you think are particularly under represented in fiction?
  27. What can non-disabled writers do to be good allies to disabled writers? What can disabled writers do to be better allies to disabled writers who have other marginalised identities too?
  28. How can we make our books more accessible to disabled readers?
  29. If someone has written/published harmful representation of disabled characters, what can they do to make amends?
  30. Share something positive about writing and disability- a positive experience in the writing community or industry, a book with great rep, an inclusive writing event.
  31. Have you learned anything from WriteDis that you want to share?

WriteDis Guidelines

WriteDis is due to start on Twitter on 1 March 2017. It will be a month long discussion on disability and writing. I will post a question every day and you are invited to respond to that question using #WriteDis. If you are new to Twitter chats and don’t understand how it works, just ask me. Questions will also be available in advance. 

In order to make WriteDis as inclusive as possible, there are a few guidelines.

  1.  WriteDis is for anyone who wants to discuss disability and writing. You do not have to be disabled to join.
  2. If you are disabled, you don’t have to tell anyone if you don’t want to. Share as much or as little as you are comfortable with.
  3. Don’t assume that someone is not disabled just because they don’t say that they are.
  4. Disabled people can identify however they want. Abled people should avoid using terms like differently abled, handicapped, handicapable, and special needs. Please keep in mind that generally disabled people prefer identity first language (disabled person, autistic person, deaf person, etc). 
  5. I hope that this event will provide education for all of us. However, disabled people are not under any obligation to answer questions. If you do have questions about disability, you can use the hashtag to ask them but do not harass specific people. 
  6. People are experts on their own experience. If a marginalised person says that something is harmful and you are not part of that marginalised group, accept what they say, do not argue.
  7. Be respectful. Remember that everyone is at different stages of learning. 
  8. Try to promote the most marginalised voices in our community.
  9. I want this event to be inclusive. If anything is not accessible, please let me know. If anything is not inclusive, again let me know. 

I hope that you will join me on 1 March for #WriteDis. You can follow us on Twitter @WriteDis

Review of Annie McKie’s Writing Retreat


Earlier this year I decided that I needed a couple of days away just to concentrate on my novel. Usually when I go on writing holidays it’s because I want to write but also want to have other people to socialise with. I like the balance between being productive and being sociable that writers retreats usually give. However, on this occasion I booked with Annie knowing that it would be a solo experience. I was struggling with the plot for Deadly Dreams and needed to just get away and have space to think.

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I took the train to Lydney and Annie met me there. For no extra charge, she drove me from and to the train station. Annie was really friendly and she made me feel so welcome. On the first evening I was invited to eat with Annie and her husband and they were delightful company. Every other meal after that was taken in my room. All of the food is vegetarian and I enjoyed every single meal that Annie made. There was always plenty of it and it was so healthy.

 

 

As the only guest at this retreat, you can choose what time you start your day. Annie would always ask me the night before what time I wanted breakfast and I was able to choose what I wanted to eat (for breakfast, other meals are set). Annie’s retreat is the perfect place to get away on your own. You get your own room with an ensuite shower room and balcony. It has it’s own entrance which I thought was great because it meant I could come and go as I pleased. The room is spacious and comfortable. It has a nice double bed, a desk, a wood burner, and a little library of books.


Unlike other retreats that I have been on, you literally just have your room, which suited my needs perfectly. I think I would probably struggle for longer periods because it really is a solitary experience (perfect for a couple of days, but even an introvert like me needs company after a while) and there is nowhere else in the house to go. There are, apparently, beautiful walks in the area but my fibromyalgia was flaring up pretty badly at the time so I didn’t make it far. There is also a pub close by if that is your thing. Annie was lovely enough to pick me up some things from the local shop so I had plenty of snacks, lovely meals three times a day, a beautiful view and wifi. For me this meant  there was no need to go out! I had everything I needed and was very content to alternate between my room and the balcony.


My time at the retreat was very productive. There are no distractions except for the beautiful views. You don’t have to worry about food because it’s all provided. The room is comfortable. It’s peaceful. There’s a little fridge in the room to store cold drinks and tea and coffee is provided, along with fruit and cereal bars for snacking. It certainly gave me the time and space that I needed.


I would recommend this retreat to anyone who needs some time on their own, regardless of if you are a writer. Annie was lovely and a wonderful host. It was a beautiful place to visit and the views were inspiring. I think the photos speak for themselves!

Cost: £140 for two nights.

Website: http://www.anniemckie.co.uk