Lisa D. (chaoticidealism) wrote,
Lisa D.

You're Not Like My Child... My Child is Severely Disabled.

I get this sometimes. People look at me; they see I can talk, I can take care of myself, I live on my own with no more than a case manager checking in weekly (thank goodness, by the way; it was long overdue and I'm very pleased to finally be able to depend on someone to help me figure out the little unexpected bits of daily life)...

And they say, "You're not like my child. My child is severely disabled. He can't go to college. He can't talk. He won't live on his own. He can't..."

I've brought this up with various people, and many times, the response is, "But you've come a long way." Which is true. As a kid I threw tantrums because I didn't want to take my coat off. I didn't realize "hell" was a swear word until I was eleven. I had to go to the hospital when I was fifteen because I'd put unpopped popcorn kernels in my ears and had to get them taken out again (they fit so nicely I couldn't help myself). I don't think I've ever been "severe", but I don't think I'm "mild" either. I'm in the middle, somewhere. Intelligent, but disabled.

The people who make this point are trying to say, "You can't predict what a child's future is going to be like. People learn. The child who's wearing diapers today may be going to college tomorrow--maybe while still wearing diapers. Autistic people are often a lot smarter than they seem, anyway. He might not be able to talk, but what if he can learn to read?"

I get this. It's true. Quite a lot of autistic people do things that they aren't expected to ever be able to do, simply because their skills have been stereotyped by others to be at some low level, when in reality, they have talents nobody thought they could have because they didn't have the prerequisites. Many of us walk before we can crawl, read before we can speak, do algebra before we learn our multiplication tables. And it's good to remind parents that a child with autism can have these talents, that he will learn as he grows older, will benefit from therapy and from schooling and from a reliable, welcoming environment. The child who can't, often grows up to be an adult who can, whether in the typical way or in his own way.

And yet... it troubles me. Why are we telling these parents, "You have hope; your child may not actually be severely disabled; or, your severely disabled child may have talents you don't expect him to have"? Why is it encouraging to tell parents that a disability probably isn't as severe as they think it is? It's true, in many, perhaps most cases, that improvement and learning are inevitable. But where does that leave the parents? They are basing their hope on whether their child improves, and the fact is, some children don't. Say the child has Rett syndrome, or Heller syndrome. Both of those are degenerative. These kids will lose skills. Rett's girls often die young. Or, say that their child is one of the unlucky ones for whom learning is not permanent--who learns a skill, and then loses it. Or perhaps they are one of the ones with multiple disabilities, health problems that limit their energy and ability to focus. Say their child really is severely disabled, and will remain so for their lifetime. That is always a possibility. Even for neurotypical, healthy children, there is the possibility that they will suffer a brain injury or an illness, and be severely disabled in adulthood.

To tell a parent, "Your child is probably not as severely disabled as it seems," in an attempt to encourage them, is not productive because it does not challenge the notion that disability causes someone to live a worthless, vulnerable, unhappy life. It implies that the parent's fears--of the child growing up to be dependent, unable to speak for himself, unable to provide for himself--are justifiably frightening because living like this would be intrinsically bad.

Instead, we should take into account the possibility that a child will grow up to be severely disabled--and that this is still okay.

What does a good parent want for a child, really? Deep down, they want their child to be happy, to have useful things to do, to be accepted, to feel loved, to be safe. All the superficial things--job, schooling, marriage, independence both financial and physical--are just ways to get those basic needs met. They're the ways that neurotypical people meet those needs, and they're legitimate goals. But there are other ways to meet those basic needs. There are ways for anyone, ever, no matter how disabled, to meet them.

Maybe it's because I have a history of depression, but one of the best ways I've found to face things that I fear, is to accept that they can happen--and then think about how I will deal with them. If a tornado threatens my apartment, I will stuff my cats into their carriers and huddle in the bathroom. If someone breaks down my door, I will escape out the back window. If I can't work, I'll volunteer.

Say you are a parent with a young child, and your child has autism, and it's still unclear what they will be like when they are grown. Or maybe you can see even at this stage that the child will have problems in adulthood. My primary approach would not be, "Your child may well grow up to be like me," even though that is a possibility. It would be, "And what if your child does grow up to be severely disabled? What do you really want for your child--beyond the superficialities? And if he grows up to be severely disabled, isn't it true that he can still get those things?"

Many parents facing a child's diagnosis for the first time are frightened of things like, "How will I keep my child from being mistreated?" That's why they're so afraid of institutions. They're afraid that their child will be hurt, neglected, or dismissed if he needs ADL help in adulthood. And they think that this means they are afraid of disability... But in reality, they are afraid of the way other people react to disability. They're afraid that their child will be abused for being disabled, much the way the parents of a gay child might be afraid that their child will be beaten up for being gay. The problem here isn't the disability--it's the prejudice. And that can be changed.

Other people say, "I'm afraid that my child won't be able to work when he grows up. He will just be forced to sit around with nothing to do." Well, I don't work, and I do have useful things to do; but let's say your child is Not Like Me at all, in the most extreme way... say he's not able to volunteer or write essays for a blog or read books. Why do you want your child to be able to work? Because you want him to be financially independent, and because you want him to be a part of his community. Financial independence means the ability to decide for yourself that you will live in a safe place, with the things you need, and some of the things you want. And being a part of your community allows you to be treated with respect and seen as human. But all of those things can be done by a person with a severe disability.

And then there's the disability itself. There's often distress associated with it. What if a child doesn't grow out of meltdowns and has to deal with them as a 200-pound adult? What if they have chronic pain? What if those seizures can't be controlled? What if showers are always as terrible as they are when the child is five? All of those things can be unpleasant and they can stay until adulthood, but let's put it in perspective: Neurotypical people, non-disabled people, have unpleasant parts of their lives, too. Unpleasantness associated with a disability is not a thing apart from general unpleasantness. Is it worse to have a meltdown, or to have to wait in line at the bank? Is it worse to live with chronic back pain or to have to work in a stressful job for a boss you despise? Is it worse to suddenly discover that the milk in your coffee has gone bad, or to be unable to eat breakfast because you have run out of your favorite cereal and cannot switch to oatmeal? Just like you learn to deal with the everyday annoyances of your normal life, disabled people learn to deal with the everyday annoyances of their own lives. Yes, even things like chronic pain or paralysis or fatigue. People with all of those things have reported being happy. Is that surprising? Well, could you find happiness in a life where you had to work that stressful job? Probably. So can your disabled child find happiness in their own life.

I am not trivializing the difficulties faced by people with severe disabilities, nor am I trivializing the fears of their parents. Those difficulties are real, and the fear is real. But don't see it as an insurmountable cliff that you can't climb. You're too far away from it right now to see, but once you get close, you will see that there are handholds, and that other people further up are anchoring ropes for you to grab hold of. And slowly but surely, the disability rights movement is eroding that cliff into a more gentle hill. Our grandchildren won't even need handholds. A world that used to kill the disabled will be turned into a world where the disabled are friends and neighbors, where severe disability is no longer feared.

It's a lot easier to deal with something you fear when you have an action plan. If you have a child, and you fear your child will be severely disabled, think about that possibility and let yourself plan for that child to have a happy, fulfilling future as an adult. Don't make it contingent on your child learning (though he probably will) or showing unique talents (though he probably has them). Don't think, "Oh, if he can only learn to speak, everything will be okay." Think, "Everything can be okay whether he learns to speak or not." Whatever does happen, your child can have a future--a good future, one where he's happy, and safe, and loved, and gets to do things he likes to do. The only thing left to find out is precisely how that is going to happen.
Tags: curing autism, diagnosis, disability, quality of life, stereotypes

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