Agency & Autism

I have been reading quite a bit on human rights and disability both in the media and in philosophy, and I am appalled at the power the label “disability” has alleviated human beings of their agency and their rights.

brain-marionette

I started studying this topic with the intention to explore it as a PhD topic in political theory. I started to rethink my choice when it occurred to me that academic thought was not going to educate employers any faster, nor was it going to be a credential they would recognize as relevant if I were to have that discussion myself.

So much for my current education. Funny how diagnosis changes perspective and purpose. Topic for another day…

Anywho, lemme run down some concepts in case you are a new to below.

Agency is the capacity of individuals to act independently and to make their own free choices.

Human rightsare defined by the UN with specific charters for women and the disabled. I urge everyone to actually look it up themselves. And, please note as well the countries that didn’t sign, didn’t ratify, and/or put tons of caveats.

The basic points are that each human is just by virtue of being human is entitled to universal rights. Unfortunately, just as they have tried to curtails the rights of people of color and of women, they have tried to limit the rights of disabled beyond what is reasonable based on impairment, most recently the reproductive rights of Autistic persons by seemingly well intentioned parents that are not giving their children a chance to even blossom, which we often do late.

The most recent offense was by a Judith Newman (I refuse to plug her repugnant book), but I have seen numerous blog posts as well. These are mostly written by mothers who think their children will never be capable of raising a child, let alone a disabled one. They may not entirely be wrong in all cases, but some go looking for the ability to physically alter their child before they even reach puberty. This is unconscionable.

Never mind that interfering with a child’s sexual development could possibly harm them for life, which is not even treating your child like a human being. This breaks the very tenants we claim to respect as members of the UN. Somehow having a disabled child absolves one from having to respect those rights. I’m utter disgusted by this behavior. Just because raising your Autistic child was difficult, does not make you the “owner” of this being with right to do whatever you want with him or her.

That said, I get that these “autism warrior” mothers believe they are acting in the best interest of their child, but I’m not entirely convinced that these women truly understand more about their child than the behavior they are not getting from them.

I cannot stress enough how sensitive ASD people are. Most of us anyway. If you have a child that is unresponsive, my first question is how patient are you the parent? Even though I am on the Asperger’s side of the spectrum, I can tell you that 6 sets of eyes staring at me at the dinner table with contempt for not wanting to eat most vegetables made dinner miserable for me. My pediatrician blamed my parents for somehow sending out “broccoli hate” that I was somehow picking up on even though everyone seemed to love it except me. Breakfast is still my favorite meal of the day even though I live on my own and eat most things today. But, I digress, as I do often.

Just because I “should” eat a variety of vegetables does not mean I am malnourished from my childhood. Heaping on pressure was just traumatizing. Forcing me to eat foods or keeping me at the table all night does not aid child/parent trust. It turns the parent into the villain, however “well-intentioned” it may seem to other parents of NT children. NT families are not what you should be judging yourself or your child by. Period. Your Autistic child will never “normal”. Grieve if you must, but NEVER let them know.

So, I keep seeing this discussion of wanting the right to force vasectomies and hysterectomies on Autistic children. The youngest I’ve seen was eight. They don’t even know what he or she will be like at 18 or 26 or 32 and yet they are ready to make life changing procreation choices for them? Is this out of concern for care or is this out fear of more Autistic people in the world?

One thing I can tell you is that, barring violent behavior, most people are mildly shitty parents. I wish my Autistic father hadn’t been sexually abused as a child, which made him 100 shades of fucked up and a bad parent, but he could have tried harder. I chose not to have children, but at least it was MY CHOICE. Point being: even Asperger’s folk can suck, so there’s no reasonable line to draw in the sand about who has the capacity and who doesn’t, in a quantitative sort of way.

If I remember correctly there was a eugenics-y sort argument for Down’s adults 10 or 20 years ago. Don’t think I don’t get it. I do. Ultimately the point is to be able have supports there to help out where any parent lacks. But, I do not believe at all that function Autistics can’t be parents. I know a few. Most put that job above everything else in life. That’s more than I can say for NT 18-year olds in the welfare office that wear a child like an accessory (True. Story.).

Further, I also get the overpopulation argument as well, but frankly, it isn’t statistically our population responsible for that. If anything, we are at least geared towards the fields that can help fix the problems of the modern world. Let’s face it: you need more us and less of you.

2 comments

  1. Let me try to type a response that doesn’t turn TOO dark and ugly… (Eighth time’s the charm, right?)

    I fear that, just as there are people who think autism means not being able to choose to become a parent, there are people who think autism means not being able to choose NOT to become a parent. (Actually, I know there are such people, because I’ve met a few.) If a woman on the spectrum goes to a doctor on her own, and she tells that doctor that she wants to have her tubes tied, isn’t that her right? (Shouldn’t she be allowed to choose not to have sex at all, if she doesn’t want to have sex?) If a man wants to have a vasectomy, shouldn’t whether or not he has Asperger’s be irrelevant? Arguments such as “You owe your parents grandchildren” and “Maybe your kids won’t be as messed up as you are — you never know” and “This will be your chance to make amends for forcing your own parents to raise a defective kid” and “How can you even know you don’t want to be a parent?”…

    Having the right to choose to do something must include the right to choose NOT to do it, too, or it’s not really a right.

    Liked by 1 person

    • Certainly!! I never meant to imply otherwise. I chose myself not to have children. It should never be an obligation, but at the same time it shouldn’t be robbed of anyone just for being disabled. That’s my only point.

      Liked by 1 person

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