From time to time various people decide that they need to give me advice about the simplest of things (booking a table at a restaurant, using a taxi, that sort of thing).Some people also take pity on me when they believe that what I am trying to say is not being understood by a third party (for example when I am asking about different phone deals in a shop). I am sure these people think they are doing me a big favour, but they are actually doing exactly the right thing to really annoy me. There is a word for this sort of thing – ‘ablesplaining’. That is, people who don’t have disability ‘helping’ people who do have disability with things they can do themselves. There is a version of this sort of thing called ‘mansplaining’ which is where some men will patronise a woman when giving advice about things she can probably work out herself (apparently anything to do with cars is a common environment where this can happen.)
So yes, today I have my ‘politically correct’ (or what I think of as simply ‘being respectful of others like a decent human being’) hat on.
Usually the people who are trying to ‘assist’ me to book a table at a restaurant and so forth do not have hostility or discrimination in mind. They probably genuinely think they are helping. But I don’t think it is very helpful and in my case it makes me feel I am like a child or an incompetent person. I certainly don’t have skills to do some of things my non-autistic peers often take for granted. I don’t drive because I am anxious, I need support for mental health issues, my ability to work out ulterior motives of others is almost non-existent and other challenges but none of these things make me a incompetent person. With regard to not driving, I earn a good wage can take a taxi if there is no bus route to where I need to go. I bought an apartment on a very good bus route keeping in mind my non-driving. If I need photo ID I always keep my passport up to date even if I don’t plan to travel overseas so I have the requisite ID points when required. I also have my Australian Public Service lanyard which is photo ID and a Working With Vulnerable People card (also photo ID). Basically I plan for my limitations and challenges and build in strategies to manage them. In other words, I am a resourceful human being, not somebody who needs to be schooled in how to book a table for dinner!
Another thing to consider around this is that I am exceptionally good at some things non-autistic people are generally not so good at but I don’t condescend to them about it. An example is my ability at writing. This skill is innate – I have never learned to write in any formal sense but I have written three published books and contributed to many more (I’ve lost count of the number but I think it is around eight). When I meet a non-autistic person I don’t hover over them while they write an email to their mum, hoping to give some pearls of wisdom around a topic they are so plainly deficient at compared to my literary skills! Public speaking is another exceptional skill I have. I never really learned how to do it. This week, I spent thirty minutes preparing a talk, delivered it the next day and had the organisation (who never really knew me before) ask me to join their Executive Board right after the talk. I don’t ‘dis-ablesplain’ to my non-autistic friends who struggle with public speaking. If they ask for assistance I give it.
There is that cringeworthy image of a person with a vision impairment crossing the street when some well-meaning citizen steers them into the opposite direction they need to go in, thinking it is ‘helpful.’ It is exactly the same for those of on the Autism spectrum or with mental health issues. If we ask for help, please do give it. If not, we probably don’t need it and it may just irritate us.
I think the key with this stuff is perception and actually, although I hate to say it, power. I think that Autistic people and people with schizophrenia (my own disability ‘labels’), very commonly experience a power differential, especially with clinicians, some family members, educators, and other support people. The dynamic can be one of support and help in its best manifestation or invalidation and dismissiveness at the other extreme. This power dynamic is not the sole responsibility of individuals. It is part of the way society seems to be structured and the shared attitudes around disability held by many. When I get up on stage and introduce myself as an Autistic woman with schizophrenia I deliberately put it in the same slide that says I am a public servant, Masters graduate, homeowner, author and things like that.
I think they more we can change people’s expectations of incompetence and dependence for those with disability and health conditions the better. I think ablesplaining comes from an often unconscious power dynamic where the person with disability is seen in need of help and that translates to everything about them, including things they are capable of without assistance. Our skills and competence can be eclipsed on some people’s minds by that diagnostic lave;. I had a professional woman say to a on-Autistic friend I was dining with at a function ‘oh, she’s so articulate!’ after speaking with me well within earshot (I was less than a metre away from her!) I’m sure this rather insulting statement was not meant to offend but I felt like a performing seal!
Thankfully a load of my Autism and mental health advocate friends are working on this and trying to empower us and change those unspoken power dynamics and assumptions.
I always have to restrain myself in ablesplaining situations from saying, well, this:
“I have published three books with Jessica KIngsley Publishers. I have spoken for TEDx and at almost every major Autism event in Australia. I manage severe mental illness on a daily basis. I overcame involvement in drugs and crime, self-hatred and bullying to be a well-adjusted human being. I have worked in a responsible paid job in Government administration at quite a high level for over nine years. I have a number of awards for my work around advocacy. But no, I’m really struggling with whatever menial thing you are ‘helping’ me with. In fact, why don’t you do it? I’m a bit tired after all those achievements. Oh and make sure you book for a high chair and a table near the window. Will you remember to do that? I know it’s tricky but….”
Me, not being incompetent at the National Library talking about my second book which had just been released