Today, I feel that I’m not good enough for neurodiversity. It’s Autism Awareness Month in the USA, and of course this means that the neurodiversity activists jump up to interrupt the thousands of autism recovery parents who claim their child was cured by some unapproved and unproven treatment. They always hint at how wonderful autistics are, how their parents should love them for who they are, rather than wanting to turn them into NTs. And yet, there is still some sort of conditionality in disability rights: if you have capabilities, prove it and you will be de-institutionalized, get rid of your chelative and the ABA therapist will stop wastign his behavior modification therapy time on you. Or is it just me?
Today, I read several posts about legislation protecting the rights of people with disabilities, forcing de-institutionalization, etc., mostly from the USA. I’ve also been reading up a lot about Dutch legislation regarding forced commitment and treatment and restraining measures (under which time-out falls in the Netherlands) and seen I should’ve been asked to give consent for my January 24 treatment plan (a patient has the right to informed consent, but I thought that just concerned drugs) and most certainly for the time-out policy because, as a voluntarily committed patient, restraint isn’t possible unless the patient’s given consent. Yet now yesterday a nurse threatened to ask for time-out permission from the doctor again (we removed it out of the treatment plan two weeks ago). I’d decided not to complain about the treatment without consent of last January because it is three months ago, but now that it may happen again, I’m thinking whether I am allowed to stand up for my rights. Or is that just another variation of claiming the right to be autistic – which autistic self-advocates don’t see as a problem, but the rest of the world does?
I didn’t use to know my rights. I know them now. Can I stick up for them? Or is the only way to stick up for my rights, to prove that I’m capable enough to have these rights. The hospital uses whatever definition of me that suits them the best on a given moment: I am good enough if they want me to go to the open ward, but bad enough if they want to put me into time-out.
hymes said
You do not have to “earn” your rights. They are inalienable. They are yours because you are a human being, not something you have to be “good enough” to have. I’m so sorry your rights were violated and that you are being threatened with your rights being violated again. Is there a patient advocate of any use where you are or would your parents speak up with you about this?
heather said
hymes is right Astrid. You have rights that seem to be clearly violated. Threatening you with time-out is psychological abuse and isn’t treating you with the respect you deserve. If you are close with your parents or other family members or a close friend, talk to them. You have a right to review your records, doctor’s notes, and to be part of your treatment plan which shouldn’t include negative reinforcement.