Hand-over-hand

Previous (Part B)

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Always, always remember that a student has a right to say no.

There are still times when we use physical prompting in our class, primarily when teaching a new motor skill.

Please remember that many – most – students do not need that physical support even with these skills. But some students struggle significantly with apraxia or other motor difficulties that benefit from some support.

But we do so cautiously.

We ask – “Can I help you?” […] give them the chance to give consent, or to say no.

Even if they cannot verbalize consent, I hold my hand out without grabbing them.

Do they put their hand on mine? Do they pull away? And they always should be allowed to pull away.

I think of it as if I was taking lessons to swing a golf club. The trainer may assist me by providing physical support to feel what a swing should be. But notice: the trainer is going to ask me if they can support me. And if I decide, mid-swing, this isn’t working for me and walk away – they are going to let me. The trainer is not going to chase me around the golf course, trying to grab my hands and arms. It sounds ridiculous, yet so often we do exactly that.

ms. a

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I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic.

It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting.

And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t.

I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

ischemgeek

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Next (Part D)

Compliance

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People who can’t say no, can’t say yes meaningfully. […] Making the best of a bad situation isn’t consent.

Ruti Regan

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when you’re working for rewards, not getting them is a punishment

Birdmad Girl

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Successfully modifying a behavior is not the same as understanding why someone was doing something, and it is not the same as meeting their needs.

Ruti Regan

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[…] ‘compliance’ as if it were the answer.

Just follow this beautifully laid out plan replete with measurable goals with neat little timeframes and clearly named people assigned to each intervention, and all will be right with the world!

what must someone give up of their own desires, wants and most intimate beliefs in order to give in?

While non-compliance isn’t an easy answer anymore than compliance is […]  Non-compliance saved my life.  And not because I did brilliant things instead of what people were instructing me to do.  I absolutely did quite the opposite of that.

But I got to keep my fire and my sense of self while doing an array of stupid and risky things, and what that meant was that when it came time for me to get a little smarter about living, I had the energy and drive left to do something about it.

Out of context, Sera Davidow

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[…] It relies on continuous extrinsic motivation, which means conditioning the person it’s being done to to comply with a lot of things that they’re actively unwilling to do for several hours a week over and over. It means making them do things that make no sense to them, over and over for many hours a week. That’s dangerous. It’s especially dangerous for people with disabilities who have complex communication needs.

It’s dangerous to make a kid do things that make no sense to them over and over and over while relying on extrinsic reinforcement. That teaches them that people in positions of power can do whatever they want to them, and that they have no right to protest or understand or influence things. It leaves people subject to it very, very vulnerable to abuse. Extreme conditioned obedience is dangerous, and it’s the most persistently reinforced behavior in it. It’s generalized to other environments, and does not go away once therapy ends.

Ruti Regan

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Next (Part B)

Quality

Previous (Part B)

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broadly speaking, biomedical protocols/treatments/etc meant to help autistic people range from useful to quackery

broadly speaking, i think the best way to distinguish useful treatments from harmful ones is to look at whether or not they stand to benefit the autistic person themself, rather than simply those around them.

while ‘quality of life’ is an incredibly arbitrary and ableist term invented by and for neurotypical, able-bodied people, it is true that if a treatment genuinely helps to improve an autistic person’s sense of satisfaction with themselves and their own life, and makes them more able to do the things that make them happy, it is probably a useful treatment.

the point is, i don’t think it’s fair to dismiss a broad category of treatment just because a more specific one doesn’t work; autism doesn’t exist as a separate entity, but autistic people exist, and our symptoms are incredibly multifaceted; some can be treated pretty well, and others we neither want nor need treated at all.

this is why my bottom line for the usefulness of a treatment is whether or not it does anything for the person’s happiness.

if someone is going through a treatment that makes them miserable for symptoms that don’t impede their health and happiness in the first place, it’s worth questioning whether the treatment is worthwhile at all.

Meredith K Ultra, zeke

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“Drugs” are not a lumped-together category that can be commented on with any degree of specificity. Specific drugs on the other hand are.

Mel Baggs

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People who want to alter their own mental state by ingesting a substance should be able to buy that product with informed consent […] what is called food

People who want to use drugs for that purpose and give informed consent should be able to buy drugs as well. That includes children. Minors can’t consent in the legal sense, but in practice with a truly caring parent, a little information and some yes-or-no questions go a long way.

The problem with psychiatry is the corruption and incompetence among the people recommending which drugs to take, not the chemical content of the drugs themselves.

The Trender System

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Next (Part D)

Cure

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Main argument: Severely disabled

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I don’t hate myself, I just wish there was a cure so I could function better […]

Jonathan Mitchell

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[Some people] would not want a full cure but would take half of one, perhaps lowering the impact of certain symptoms while maintaining the core traits.

Creigh, Caley

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“But if you took away my autism, I wouldn’t be me!” neurodiversity proponents cheer.

“Yes, you would, and no, you wouldn’t. And that’s all okay,” I counter. Every human on this planet […] ha[s] no inherent, independent, unchangeable, enduring selfhood as such.

Twilah Hiari

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[E]very time I see a post about anti-cure or use of “autistic” and the r-slur as insults, there are inevitably a few autistic people commenting that they would actually want a cure, or that they’re okay with people using “autistic” as an insult.

In a vacuum, these sentiments are fine. You’re entitled to your own opinion, and if you are autistic both these matters are of direct concern to you […]

But we’re not in a vacuum.

We are surrounded by ableists. […] if you present an opinion that aligns with their beliefs and goes directly against the held beliefs of the majority, they’re going to tokenize you. Because one autistic voice that agrees with them is enough to undermine the voices of literally everyone else. […]

I’m not saying you should never express that you want a cure or that you think using autism as an insult is okay. […] But you need to be very careful why and how you express these opinions, because ableists will use your voice as justification to hurt people […]

Anna

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When we stop talking about ‘curing autism’ and start talking about ‘relieving autistic suffering’, the research takes on a whole new direction. When we stop using the cognitive shortcut ‘autism’ and start describing the exact problematic behaviors and traits that are experienced as a result of environmental, physiological, or social factors […] we may actually start having productive conversations about autism […]

VisualVox

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On the one hand, I read about how people need to find the positives in their conditions to help maintain self esteem and find a balance, and that makes sense.

On the other hand, I think that if we define the condition in terms of deficits, then the creativity and energy belong to the person, not the condition. And then, the reluctance to be free of the condition (assuming such a thing is possible) disappears.

Out of context, Sarah K Reece

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The truth is – if someone had offered me a ‘cure’ that would make me completely neurotypical in the first twenty three or so years of my life, I would have torn off their hand to get it.

That’s not an admission of defeat on the topic of neurodiversity, or a surrender to the idea that a ‘cure’ for autism is something that is wanted or needed. In fact, it’s one of the core reasons that I advocate so strongly against the very idea of finding a ‘cure’.

[…]

These arguments [that support the choice of a cure] fail to address the fact that the issue here is not being autistic or being LGBTQIA+. The issue is ableism, homophobia, transphobia and all those ways that the world crushes down on you, repeating again and again that you are wrong, that you are defective, that the word was not built for you; a world that demands that you cut off your corners to fit through the hole, when the true answer was to widen the hole altogether.

Erin Ekins

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I’ve thought a lot about that mythical cure, and there have been days, many days, when I didn’t have to think at all – when I knew that, if I had a chance, I’d take a cure in a heartbeat.

I want the things a cure could give me. […]

Can you look at the list of things I want, and tell me if you see a pattern?

Every single one of those things I want?

Have nothing to do with being autistic.

In the end, there are really two things I want when I say I wish I wasn’t autistic or I want a cure. I want to not feel like a freak, and I want to feel safe. Those are hard, scary things to feel and to admit. And, because I’m being honest, I have to ask something even scarier.

What if being cured didn’t fix those things?

Julia Bascom

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We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” […]

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause. […]

Jo Ashline

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[…] And for that matter the whole cure topic gets oversimplified the same way.

While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did.

I have worked right alongside people who want cures (some of whom even did ‘biomed’), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on.

And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

Mel Baggs

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Basically, if there were to legitimately be no pressure to become neurotypical, if being autistic were actually OK, if it were a choice a person made for themself and only themself, with informed consent […] in that world? If it existed, and they chose it, I would shake their hands and wish them luck.

In the world we actually live in, I expect that the cure would be forcibly used on children, […] on anyone who receives services, and for any portions of the autistic community who technically were getting it only under informed consent, choosing not to would be used as a sign of incompetence, at which point it would be forced. That means any organization that states finding a cure as a mission is inherently not trusted.

Alyssa Hillary

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Unlike the porous and broad meaning of ‘disability’ – a word that has come to reflect the potential for community building and solidarity across difference in many disability communities – philosophical and medical framings of ‘severe disability’ presume undesirability, objective tragedy, and potentially a lack of personhood.

Sunaura Taylor

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