Feminist Aspie

#DDoM2015: We Are Not Just Things To Be Dealt With

on February 28, 2015

TRIGGER WARNING: Abuse, including child abuse, murder and references to autism “therapies”.

Tomorrow, 1st March, is the annual Disability Day of Mourning, organised by disability rights organisations such as Autistic Self-Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund. Disabled people organise vigils and read out the names of disabled people killed by their parents or caregivers; a list which grows year on year at a horrifying rate. It’s reached the point where ASAN has compiled an Anti-Filicide Toolkit; the point where we need to actively teach people not to murder us for being who we are. Worse, when such a killing reaches mainstream media, the world reacts not with horror but with sympathy for the killer for dealing with us for so long – that is to say, for not doing it sooner – and their sentences, if they are even given, are lighter. The victim, meanwhile, is seen as nothing but a burden, a problem, a thing to be dealt with.

Sadly, this awful thought pattern shouldn’t come as a surprise when you consider the way we think about disabled people.

For example, autism is far too often considered from the point of view of a neurotypical outsider, rather than from the autistic person. Our sensory processing differences are rarely even acknowledged; our coping mechanisms are seen as “behaviours” which are different to neurotypical behaviours and therefore must be stopped. Our communication methods are dismissed; we are framed as deficient for lacking fluency in neurotypical non-verbal communication, yet neurotypical people make no attempt to learn ours, even for those people who can only communicate non-verbally. Even if we are diagnosed young, we often only learn about our own neurotype from the point of view of someone in our position via the Internet, for those of us able and allowed to access it.

When many neurotypical people talk about “the autism community”, they view it as including neurotypical people themselves, not as allies but as the main voices and authorities. The focus is on “autism parents” and “autism families”; not autistic people themselves, because we’re the things to be dealt with. Sometimes I even see phrases like “families with autism” (to describe families where one person is autistic), just to make it absolutely clear that they see autism as a thing to be dealt with by neurotypical family members.

The biggest voice of all is the neurotypical-run organisation Autism Speaks, despite being abhorred by the vast majority of autistic people for reasons outlined here; amongst them, a video called “Autism Every Day” in which a (then) board member talks about wanting to drive herself and her autistic daughter off a bridge, stopping only because of the effects it would have on her other, non-autistic, daughter. She says all this in front of her autistic daughter; nobody thinks of her as listening and understanding, because she’s not seen as a human, she’s seen as a thing to be dealt with. Just four days after the release of this video, Katherine “Katie” McCarron was murdered by her own mother. In November 2014, London McCabe was murdered by his own mother too – by being thrown from a bridge.

Autism Speaks, amongst others, signifies autism using a puzzle piece. Because we’re puzzles to be solved. Things to be dealt with.

And how are we dealt with? Abuse (abuse trigger warning for all links in this paragraph). Institutionalisation. The unimaginable horrors of the Judge Rotenberg Center. “Therapies”, like ABA, aimed at making autistic people outwardly act neurotypical; because what’s on the outside is all that matters, we’re not seen as having an “inside”, we’re seen as things to be dealt with. “Quiet Hands”. I’ve even heard of clicker training – yes, as in clicker training for dogs – being used. Ultimately, the result is conditioned compliance. The result is people feeling unable to say “no”.

They don’t really see us as people, and overcompensate in their language. As a general rule, autistic people prefer identity first language, but many neurotypical people often actively argue against this, telling us time and time again that we’re somehow being offensive to ourselves, even in response to our words about the aforementioned abuse. Their sentences do all sorts of gymnastics to avoid the word “autistic”- person with autism, person living with autism, person who just so happens to have autism – and all I hear is “I can only see you as a person if in my mind I push your autism as far away from you as possible, because it gets in the way of my view of you as a person”. Again, things to be dealt with.

Those of us who are verbal and who can pass for neurotypical are categorised as “high-functioning”; it sounds like a compliment, but it’s a trap. It means we’re put on a neurotypical pedestal, deemed “not really autistic” or “recovered” (Autism Speaks are still happy to count us in their scare-statistics though…) and therefore not taken seriously. Our differences are still, suppressed, openly mocked and used against us, but when we acknowledge them ourselves – for example, if we request accommodations – these same differences are denied totally, and we’re told we’re over-reacting. “High-functioning” is, ultimately, a threat; you know how we treat the autistic people who can’t or won’t pretend to be neurotypical, it says, so you must pretend – at all costs. The impact of those messages is so hard to undo, even when you know rationally that it’s wrong and ableist for people to expect that of you. And frankly, it’s exhausting.

Most people don’t think about autistic adults at all; media focuses almost entirely on children (or rather, almost entirely on the parents of autistic children…) and representation of autistic adults in fiction is usually very one-dimensional and stereotypical, and rarely involves input from actual autistic people, because it’s aimed instead at neurotypical people as “inspiration”. We’re not considered a part of the audience, we’re just a one-off “inspirational” plot line to boost ratings. We’re things to be dealt with.

This all means that everyday, unquestioned, “normal” expectations – how experiences should be, the amounts and methods of everything you should do, how you should feel in some cases – do not include us. The exclusion is subtle, and usually accidental, but it’s there, because society at large doesn’t consider that humans exist with different needs which need to be accommodated. In the UK, only 15% of autistic adults are in full-time paid employment, and of course there’s the social aspect, which cannot be measured with numbers. We keep quiet, partly because we know we won’t be taken seriously, and partly because we were never given the tools to ask for help.

Neurotypical people use this false high/low functioning dichotomy to silence us; if we speak out, they think we’re clearly too high-functioning to count, and Not Like Their Child; never mind that most adults are not like most children, and no person is the same as any other, and they’re neurotypical themselves so have no right to say we’re not autistic enough to be part of “the autism community”. Too often, “autism experts”, or to use Autism Speaks’ phrasing “autism champions”, are neurotypical – be they professionals or parents – because they have the experience of dealing with us.

Our own activism is dismissed as too negative or political because it goes against widely believed autism narratives, or dismissed as not real or a fringe issue because, due to the inaccessibility of the neurotypical world, it mostly takes place online. We’re stereotyped as lacking empathy, tact and compassion, and these stereotypes are used against us. We’re always the ones apparently failing to see other points of view, even though neurotypical people built and maintain this society to accommodate only themselves. Neurotypical and autistic perceptions are different, but it’s always ours that are deemed to be wrong. We’re too impolite, up until the point where we’re just compliant. We’re too vocal. Too selfish. Too sensitive.

Autism Speaks switched hashtags in a (failed) attempt to escape the voices of actually autistic people speaking, so we know they can hear us; they’d just rather we shut up. When mainstream media does listen to us, it requires the “balance” of comments from Autism Speaks. We have to fight our way into the conversation about our own lives. This only demonstrates that it’s not actually about us. It’s never been about us. We’re not the subjects, we’re the objects. The things to be dealt with.

With all that in mind, is it any wonder so many disabled people are dying at the hands of the people who claim to love and care about them the most? The whole way we think about disability frames us not as people with feelings and needs and rights, but as things to be dealt with, whatever the means.

This has to change. Ableism kills.

The list the names of disabled people murdered by their parents or caregivers remembered tomorrow can be found here, alongside more information about the Disability Day of Mourning 2015.

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11 responses to “#DDoM2015: We Are Not Just Things To Be Dealt With

  1. Foobs says:

    Thank you for writing this

  2. cambriaj1977 says:

    Truly, a good article. I would like to reblog this, yes? I am tired of being called a burden.

  3. bethjellicoe says:

    Reblogged this on oddlyshapedmarbles and commented:
    A very clearly written post on Disability Day of Mourning 2015. My thoughts are with the disabled people murdered by those who are supposed to love and care for them.

  4. reluctent posthuman says:

    “I am not in the buisness.I am the buisness”.Rachel in Blade runner.

  5. reluctent posthuman says:

    This is true for people with disabilities but also for everyone.

  6. Alex says:

    I really don’t know what to think about this. It’s a brilliant article and true, but it neglects to mention certain things that complicate the argument. No-one wants be seen as a burden, but that doesn’t mean that everyone enjoys being autistic – some people would be happy to be neurotypical. And people do become burdensome when you have to care for them even when you are fully aware of their personhood. It’s hard to care for someone with a disability (which autism could be said to be) or a disease (which it isn’t, and normally I’d avoid this analogy because of the negative connotations, but in this context it makes sense) no matter how much you respect them.

    As for the “fringe movement” idea, there seems to be a central paradox in how autism is addressed. I can’t see how being unable to speak or deal with sensory issues isn’t a disorder or disability, and I can completely understand why some people would wish to cure them (whether someone wishes or does not wish for those aspects of themselves to be cured is more important for those affected, but irrelevant to whether or not they count as disabilities).

    But I also can’t see why going against heavily entrenched social norms, using different but equally worthwhile methods of communication or having things that everyone is capable of doing pathologised by doctors can be considered symptoms of a disorder or in need to be fixed, as opposed to simply a different, equally valid way of being.

    • Thanks for this, you’ve given me a lot to think about 🙂

      Just to clarify, personally I do see autism as a disability, subscribing to the social model of disability (so basically the world is built to meet the needs of able-bodied neurotypical people and only those people, essentially “disabling” the rest of us – so “disability” =/= “inherently bad thing that needs to be cured”) and, as such, autism comes with difficulties as well as strengths.

      On the “burden” point: Looking after any person is work. Looking after someone who is disabled and/or ill and therefore requires extra help is, logically, more work, and the lack of support and services related to this issue is a real problem. However, it’s very telling that certain sections of the community only ever talk about this when an autistic (etc) person has been murdered by their caregiver, almost as a way of excusing them. Certainly I don’t think the problem is acknowledging the difficulties of raising an autistic child, but the problem is that this is often the *only* thing acknowledged about autistic children or autism generally. I feel like the situation with media is slowly beginning to improve, but for a long time all you would *ever* hear about autism in the media was about the burden of raising an autistic child, rather than anything about what autism is like for autistic people themselves, the good or the bad.

      (Also this bit is kind of going off at a tangent from your comment but I’ve wanted to mention it for a while anyway: I’ve noticed a bit of a trend in films, TV etc where the difficulties and stresses of being a single parent, or a mother/wife who’s just left to do all the housework and childcare, generally just go unmentioned *unless* they’re caring for someone who is disabled or ill, so the whole workload is sort of blamed on disability rather than being an above-average version of the “invisible” workload that comes with raising even an abled child.)

      On the sensory issues point, sensory processing is how we all perceive the world. If our sensory processing is changed, even if this is to make us more comfortable, our entire perception of the world changes, and that is why I personally wouldn’t want to “cure” even that about myself. I don’t doubt that some people with sensory processing issues are well aware of this and would decide it’s “worth it” and take that cure anyway; but why should they make that sacrifice, given that the same problem could also be resolved by designers, event organisers etc taking into account that autistic people exist in the first place and ensuring their events etc aren’t such a massive sensory overload risk? Admittedly, there are some unusual sensory triggers out there and it would be impossible to avoid ALL sensory input, but some sort of attempt at, like, acknowledging disabled people exist in the design process of buildings etc would improve so many lives and I don’t think we can fairly consider the cure issue (especially as for all we know a cure might not be possible) until we’ve dealt with the glaring accessibility issues.

      Incidentally, and again I’m going off at a tangent, every so often I come across an argument along the lines of “well why don’t we just offer a cure for those autistic people who want it” and my problem with that argument (apart from the fact that this cure remains hypothetical anyway!) is that, in practice, it absolutely would not work like that – without first tackling the negative attitudes towards autism, there would be more stigma attached to autism because it would be seen as a sort of choice but still viewed negatively by the neurotypical majority, and without first tackling the accessibility issue, simple accommodations for autistic people in the workplace etc would be denied because “you could just get treatment” and generally there would be so much pressure on *all* autistic people to get treatment whether they want it or not. Also as awareness and diagnosis are improving, there’s the issue of the extent to which autistic children can decide/consent to treatment – parents wanting to cure their children before the child is old enough to understand, parents wanting to cure an older child that actively doesn’t want cured but is still under the age of majority and under the guardianship of their parents, parents hearing all the cure rhetoric from organisations like Autism Speaks in much the same way as some do now, parents wanting to cure their non-verbal or partially verbal autistic child without even exploring alternative communication methods that would allow the child to communicate their own opinions and feelings on the matter, that sort of thing.

      Sorry this got so long, thanks for reading and for commenting! 🙂

  7. Alex says:

    N.B. : Someone who cares for themselves and does so effectively is not burdensome and describing such a person as such is a major red flag.

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