03 June 2015

The best advocates for people with disabilities

Content/TW: Discussion of ableism and abuse.

The best advocates for people with disabilities are other disabled people. Not their non-disabled parent(s), not their non-disabled teachers, not non-disabled researchers and professors, not non-disabled support or care workers or clinicians or therapists or professionals. Us.

(I preface these possible relations or positions as non-disabled because that is the relevant marker here. Obviously -- or I hope obviously, if you read this blog -- disabled people can be any or all of these things.)

If you tell a disabled person that their advocacy isn't effective because they're too emotionally involved or personally vested, what you're saying is that we should forget the trauma and harm visited on us for a false specter of neutrality -- a neutrality that derives from white masculine "rationality" and neurotypical supremacy.

The idea that intellectual, rational, neutral, distanced thoughts, speech, or advocacy are the best kind of thought depends on a way of expression that silences survivors, devalues femininity and neurodivergence, and replicates white dominance over emotion.

Let me make this plainer.

The disabled adult who survived years of abuse by classmates knows better than anyone else what a disabled kid abused by classmates in school is going through, understands without having to say anything the exponential harm created when teachers refuse to punish the instigators and only ever and always punish the victim for reacting, knows exactly what it is to be disbelieved by parents, targeted repeatedly by those pretending to be friends, forced again and again to return to the same doors.

The disabled adult who survived involuntary treatment aimed at fixing their supposedly broken, inferior brain or body knows better than anyone else what a disabled kid whose own parents who claim to love them keep making new appointments with the same doctors or therapists for the same marathon sessions of pain where no one believes what the kid says about their own feelings, where they tell them over and over again that they're hurting the kid for their own good, knows exactly what it is to be told that if only they stopped talking like that or moving like that or being interested in that then other people could accept them, or at least a fake version of someone who never existed but who everyone else believes is better than who they are.

The disabled adult homeless, disowned, out of work, stuck at home or in bed, body flaring up in pain, shaking, triggered, self-harming, using, incarcerated, committed, still healing from childhood abuse, isolated, taught to hate themself and everything about themself -- that disabled adult is exactly where others have been, has been where others are, knows their own almost as well as they know themself.

We don't need to explain ourselves to each other. We understand the forced eye contact, the leg braces, the never being allowed to say no, the someone else always being the expert on our own bodies, the always surviving new traumas, new violence heaped on old. We get it.

We take care of our own. We are fierce. We don't need your acceptance or your approval. You can keep trying to relegate us to your tokenizing idea of what you think we should be doing but we know exactly what it is. It is a lie. You would have us either pretend our experiences don't exist so you can treat us as really just like you (that is, not really disabled) or you can co-opt our experiences into a more palatable, easy to digest, non-threatening version for your daily dose of inspiration porn (enough to remind you were disabled but not so much that you remember the power of who we are).

No one knows better than us. No one can advocate better for us than ourselves. In any context. This is precisely why we need more sick and disabled people as nurses, as doctors, as healers, as lawyers, as care workers, as PCA's, as therapists, as teachers, as trainers, as lobbyists. Living fiercely, living proudly, relying on the strength of who we are and what made us to possibly be the support for each other that we never had from anyone else.

Don't fucking tell us that our experiences make us "too close" to the issues. If you have to resort to that, you are part of the ableism problem.

7 comments:

  1. Problem is finding a disabled person to advocate and get what is most needed. A job, funds, independence is difficult for anyone to get. I want to see more disabled nurses, therapists, teachers, doctors, politicians, lawyers, CEOs, bankers because there just aren't many out there to give the real support needed. So often you gotta go to someone able to get what is needed.

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  2. This is so true...but I could not finish my schooling for being a therapist because of the rules and sensory overload in school. Unfortunately, our world is not set up for most of us to finish the degrees or for us to want to give our time to corporate rules and places...so there will not be as many disabled people doing the jobs we are qualified to do...I am very qualified at helping people and have done forms of counselling on the side with a professional therapist backing me up for any complicated cases...but because I don't have a degree I can only casually help people. Unfortunately many attributes of the way society is set up will have to change before we have more disabled people being in the helping profession...some obvious obstacles are money, society rules of relationships, rules of school, time required, standard 9-5 jobs or shift work, sensory overloaded spaces with fluorescent lights...but we are the better option to helping those like us. I am more helped my my fellow aspies then my actual "professional" therapist and I have taught HIM everything there is to know to help me and help others...its so ridiculous...but at least he was teachable...I have met therapists who think they know more than me- who actually has it!

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  3. Replies
    1. I am a New Zealand Registered Nurse. I also have Aspergers/High Function Autism/ASD.
      How can I help?
      Who can help Me?

      Delete
  4. Thank you for this. I hope it gets shared far and wide. I am just starting to accept my autism instead of trying to be normal which is how I was raised due to lack of diagnosis and awareness. I often wonder if all these people I met recently while searching for help are serious when they say "We just want what's best for you."
    "You" don't think I want what's best for me? "You" don't even know me. "You" don't even feel what I feel. How can "You" seriously tell me you know what's best for me? I know! Just ask me and listen!

    The biggest problem I have with wanting to be openly autistic is that I know from experience people don't take me seriously unless I appear neurotypical. Take me seriously!!! That's all I want.

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  5. I would love to see more educational advocates who are disabled. My son's language skills are not sufficient for him to advocate for himself, but we know no one who is like him (he has mild CP; his motor planning is affected, and his speech is severely affected, resulting in him learning to use a communication device...but he runs and plays much like others his age; while he does not have autism, per several experts, he is clearly not neurotypical either). I often feel at a loss when trying to explain the things we've experienced with him that lead us to believe he is capable of far more than they give him credit for...but because they can't see how to get him there from here, they assume it's not possible.

    Until he is capable, it's my responsibility to do the best I can, and to find the best people to help him that I can....but right now, it's pretty much just me.

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  6. My only quibble is that, from a civil rights perspective....we DO need the acceptance of the non-disabled majority. For new violence to not always, always, always be heaped on the old, we really do need that acceptance.

    We've managed a long time without it, but look at the costs.

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