Say the Word

I am disabled.

For many disabled people, including me, the words we use about ourselves and each other are really important. That’s pretty applicable to everyone, actually, but the word ‘disabled’ seems to have become disproportionately complicated. There’s an aversion to saying it out loud, with people tripping themselves up not to acknowledge what amounts to a fairly simple truth. While those who don’t want to say the word may think they’re being kinder to us, it ends up having the opposite effect, and comes over as patronising and euphemistic.

My relationship with the word is a complex one. I first encountered it in my own context when I went to my university’s Disability Advisory Service to access some mental health care. While the terminology was more a matter of convenience than anything else, what with it all being in one building, my overly literal (then undiagnosed) autistic brain started thinking about how the term might apply to me. I don’t remember any solid conclusions from that set of thoughts, but it did make me wonder where my mental health would have to get to in order to make me feel like I ‘qualified’ as disabled.

The game changed a couple of years later when I was diagnosed as autistic. Along with the many adjustments to my thinking that I had to work with, I was also grappling with the fact that the word ‘disabled’ suddenly applied to me officially. I can now freely acknowledge that I handled it badly, throwing the word around quite liberally to get people to leave me alone, or joking far too heartily and lightly to convince anyone I was really alright with it. I joked about ‘pulling the autism card’ a little too often, and while people were generous with their pity-laughs, it wasn’t my best show. I hadn’t fully grasped what being autistic meant to me, and thought it was just a new name for what I already knew about myself.

In the intervening years, I have learnt a huge amount about autism from my fellow autistic people, mostly on the internet, and began to acknowledge the problems I face with it. Terms like sensory overload, stimming, shutdown, meltdown, executive function/dysfunction, alexithymia, and others became part of both my vocabulary and my sense of myself. I also got diagnosed with chronic fatigue syndrome (CFS/ME), which added a physical level to my disabilities, along with my mental health.

In learning about all these things, I have come to see myself more and more as disabled. As paradoxical as I suspect that might sound to some, this is a really, really good thing. Being able to face my autistic and disabled identity head on means that I am not pretending anymore. I am not fighting what I am, which means I have more energy to work with it, and thus get more shit done.

Words like ‘challenged’ or ‘special’ or, horror of horrors, ‘differently abled’ make my skin crawl and my stomach turn over. When someone says “I don’t see you as disabled”, I immediately lose a bit of trust in them to see me as I am and treat me accordingly, because to ignore my disability is to ignore a fundamental part of me. If my disabilities gave me nothing but special skills and superpowers, maybe I could concede that the ‘differently abled’ camp had a point, but that’s simply not the case. Sensory overload is not a ‘different ability’; my non-speaking moments are not merely a ‘challenge’; my meltdowns aren’t ‘special’. These are features of my disability that I don’t enjoy, and no amount of positive attitude, mine or anyone else’s, will change that.

According to the Merriam-Webster online dictionary, the term ‘differently abled’ was coined in the early 1980s,¹ supposedly as a ‘more acceptable term than handicapped’.² It was chosen as a word that would be less offensive to disabled people, as well as viewing them in a more positive light,³ but moreover, it was chosen by abled people on our behalf and without our input (a depressingly common theme in most stories of disability). It seems to have been chosen largely for the comfort of non-disabled people, rather than the benefit of disabled people. ‘Disabled’ is not a dirty word, nor is it inherently good or bad. For many, if not most, of us, it’s just a fact. Some of us embrace that fact, some of us fight it, some of us work with it, and all are totally valid reactions. But in refusing to say the word out of some supposed deference to our feelings, what a lot of us hear is that disability is an inherently bad thing, that being disabled is awful, that it makes us worth less.

The paradox lies in the fact that in trying to honour our feelings and soften the blow of our lives and struggles, the term ‘differently abled’ does the opposite for many of us. It shows an unwillingness to listen to how we want to talk about ourselves, an arrogance in suggesting that there is a better term than the one we chose, that we don’t know how we want to refer to what is happening to us.

A caveat to all this is that some disabled people genuinely do wish to be referred to as by different terms, like ‘differently abled’ or ‘handicapped’ or ‘crip’. Reclaiming those terms is their right, and their right alone, and if they ask for those terms to be used, then of course decent thing to do is to honour that. Terminology for oppressed groups is always tricky, and there’s absolutely no one-size-fits-all approach. There will always be minorities within minorities who want to use a different frame of reference for themselves.

For my money, though, these points of terminology are vital, and ‘differently abled’ cannot die out quick enough from common usage. By refusing to look disability in the face and accept what it is and does, those who insist on using ‘differently abled’ as their default term for ableism are going against what disabled people largely want and need. I don’t want the positivity of people who don’t live my life superimposed over the reality I experience as a disabled person. All the well-meaning in the world does not alter that I both want and need to be seen as exactly what I am.

I am disabled.

Say the word.


References/Links

¹ Merriam-Webster Online Dictionary, ‘differently abled’, https://www.merriam-webster.com/dictionary/differently%20abled

²,³ The Phrase Finder, ‘differently abled’, https://www.phrases.org.uk/meanings/differently-abled.html

Noa Zulman, ‘Why we need to ditch “differently abled”‘, http://honisoit.com/2018/11/why-we-need-to-ditch-differently-abled/

 

Autism Awareness Day 2019

CW: ableism, ABA, Autism $peak$

I am aware of many things.

I am aware that every noise, smell, sound, light, and sensation hits me harder than it does you. I am aware that the world doesn’t care a jot about this when it chooses how bright to be, or how loud to be.

I am aware that there are people who spend a long, long time searching for the reason their child is the way they are rather than accepting that’s the way it is. I am aware that the struggle of Autism Parents TM is always going to be louder than the voices of their autistic children.

I am aware that most of my social situations are on borrowed time until such a point as I am deemed unacceptable and the limits of accessibility are found. I am aware of the trend that means I never keep a group of friends for long. I am aware that people’s assumptions on what I can and can’t do, regardless of what I tell them, are enough for them to exclude me from whatever they like. I am aware that I am not good enough at social signals, reading situations, noticing emotional nuances, or coping in a rigid world to be acceptable.

I am aware that I don’t look autistic. I am also aware that no one can really tell me what autistic looks like. Except possibly Rainman. Or Sherlock. Or Temple Grandin. I am aware that I am not good enough at maths, too good at eye contact, walk into too many social situations, and don’t flap my hands obviously enough of the time to look autistic. I am aware that you think not looking autistic is a compliment.

I am aware that my pain can look like anger, my silence like rudeness, my bluntness like cruelty or meanness. I am aware there is little I can do about these things, and that I rely on the kindness of my friends to understand me, ask me, talk to me, and see through their neurotypical assumptions.

I am aware that the largest autism awareness charity in the world only gives 1% of its money to actually helping autistic people. I aware that, while they have dropped the word “cure” from their mission statement, that is still what they want. I am aware that the only real way to cure my autism would have been to stop me being born at all. I am also aware that some people are OK with that, and with preventing future generations of autistic people from being born at all. I am aware that these people think that would be an improvement to the world.

I am aware that my employment prospects are really terrible for someone with a postgraduate education. I am aware that I possess a certain level of economic privilege that this merely angers and frustrates me, rather than being a direct risk to my quality of life.

I am aware that the struggles I have day-to-day inspire people enough to tell me they’re inspired, but don’t inspire them enough to change tiny things in their own corner that would make a massive difference.

I am aware that taking people literally is a risky business, but it’s also the best way I have to approach anything to begin with. I am aware that people forget this all the time.

I am aware that there are people who pray for my healing, who want me not to be autistic. I am aware that among both those who do and don’t pray, there are many who think that ABA is a good way to make their children more acceptable to the world.

I am aware that this world tells us all to “use our words” and doesn’t like it when spoken words aren’t available to some of us, whether on a temporary or permanent basis. I am aware that no one really knows what to do with me when I lose my ability to speak.

I am aware that in all of this, I am still one of the lucky ones. I have a level of security in my life that takes a lot of pressure off me. I have a few people who love and understand me, who realise their limitations and the limitations of the world, and who see me as more fully human than I can see myself. Those people manage to be interested in what fascinates me, rather than sending me into a corner. I have the ability to communicate in ways that the world finds acceptable, and I have words to write and put out.

I am aware that when today is over, many of you will be able to stop being aware of these things. I am aware that one can go 364 days in a row without noticing that life is hard for autistic people. I am aware that this is no one’s individual fault, but that individuals are what make the difference.

Am I aware enough yet?


Links (all correct as of 4/4/19)

Michelle Diament, 14/10/16 “Autism Speaks No Longer Seeking Cure”, https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/

Accalia Baronets, 26/8/2017, “Why I boycott Autism Speaks, and you should too”, https://medium.com/@MooniWolfKomoki/why-i-boycott-autism-speaks-and-you-should-too-84112244d797

The National Autistic Society, Employment Campaign, https://www.autism.org.uk/get-involved/tmi/employment.aspx

Amy Sequenzia, “My Thoughts on ABA”, https://awnnetwork.org/my-thoughts-on-aba/