Posts Tagged ‘disability’

The lies we tell

Recently the New York Times posted an article titled The Kids Who Beat Autism. (Predictably, ASAN is questioning both the possibility of ‘recovery’ and the desirability of it.) I’ve mentioned before how I felt lied to as a child by the idea that the best way to make friends is to “just be yourself”, and this story and the reaction to it highlights why.

See, “just be yourself” is good advice–you can’t make a true friendship if you’re pretending to be someone you’re not, and self-acceptance is healthier than self-loathing. And I’m sure that all the people who give such advice truly mean it. Culturally, though, it only seems to be held as good advice for people who are sufficiently normal, which would also be the group of people least needing such reassurances. For those of us who are too different, that’s not how it seems to work. Instead those differences become something to label, treat, fix so that we can be more like other people. We get told to be ourselves just as much as anyone else–but the way we’re treated tells us that being who we are is not acceptable.

There are times when differences do need to be addressed because they are causing problems in our lives. The question, though, is what is the best way to temper or eliminate those challenges. Sometimes the work is something we have to do ourselves. Sometimes, the work is best shared or done at a structural or cultural level–it is far more reasonable to install a ramp than to ask a wheelchair user to navigate a flight of stairs, for example. And sometimes the only challenge is that those differences highlight that we are different. A lot has been said in the autism community about attempts to eliminate stimming, which frequently causes no problems other than the fact that other people notice and are uncomfortable with it. Or (lack of) eye contact, which is a very culture-specific demand to begin with. Why should anything be done about something so superficial? The problem is that often most or all of the work is demanded to be dealt with at the individual level, putting all the onus on the person who already has it hardest and sometimes bringing no benefit to that person at a personal cost.

As a culture we talk a lot about being tolerant of individual differences. In practice though, difference is often considered unacceptable. Instead of asking people who are struggling to spend precious effort on being “normal”, how much better would things be if we were actually as accepting of difference as we say we should be?

Technology is morally neutral

ADT has been creeping me out with some of their recent commercials, where they show off the ability to check in-home security cameras from devices like an iPad (Here’s one example). I get why people would want something like that–know if someone is in their house, and more importantly who and what they’re doing. It’s not even a particularly new idea–things like ‘nanny cams’ have been around for a while, and they can serve an important purpose. I think it’s the ease of checking them that bothers me, because every time I see one of those commercials I imagine a parent checking up on their teen from away to make sure they’re not getting into any trouble, maybe even having a camera in their bedroom. (I suppose I can blame this on Century City which had an episode featuring a girl whose parents were checking up on her every move via a tracking chip and access to any nearby camera.) There’s a valid use for a feature like this, but there’s also a potential invasion of privacy issue as well.

I bring this up because it’s not uncommon for people to denounce certain technologies based on how they are (sometimes) used. Pre-natal testing is a popular target, because it can lead to women choosing to abort because of something discovered via the test…but it can also give parents a chance to prepare for an added challenge they will have to deal with raising a special needs child. BitTorrent is another I’ve seen denounced, because it’s a popular way to distribute pirated media, but it’s nothing more than a file sharing technology. I used to have some trouble in college because they had done something to slow down that sort of file sharing, which was also how Blizzard distributes their games and patches. I found a way around it, but the bottom line is their attempts to stop illegal downloading interfered with my perfectly legal attempts to download game content. And I’ve posted before about how stories of bad experiences with psychiatric medications erases the stories of those who have good experiences.

This is something we need to keep in mind. We’re often tempted to limit use of a certain technology based on how it is typically used (and sometimes there’s so little ‘valid’ use and/or the social dangers are so high that doing such a thing is warranted) but the core problem isn’t with the technology itself, it’s with people. Technology isn’t good or bad, it just is, and we’re really bad at seeing that.

From Equality Sets Us Free to “I wish I didn’t have Aspergers’

Don’t.

Don’t worry about how things could be. Don’t try to change who you are. Don’t wish you were something you’re not. That way lies nothing but pain and sorrow. Because the only thing you can do is fail. Fail at being ‘normal’. Fail at ‘fitting in’ with people who won’t accept you as you are. Fail at being someone that you simply are not.

Things suck. I know. We’re told all the time that we live in a world where everyone is treated equally. We grow up with stories about overcoming, and making friend by being ourselves, and then we find out that the world isn’t really like that and you can’t be accepted for who you are.  And that hurts.

But the problem isn’t you. If it was, then there would be advice I could give you to make things right. And there isn’t. There is nothing you can do by yourself to make things better. You can try, you can learn coping mechanisms, and learn how to act ‘normal’, and it’ll help. But you will always, always fall short. And that’s because we live in a world that simply isn’t accepting of differences. It isn’t enough to ‘pass’, because that means hiding something of who you are, and that does a number on your self-esteem. It’s you living the belief that there is something wrong with you, and how can you ever be truly happy with yourself if you believe that?

We live in a world that is, when not actively hostile, passively resistant to accepting different ways of being. But that can be changed. Autism can’t. And it doesn’t need to be. We all have our strengths and weaknesses, our talents and limitations. There is no reason that some should be ‘okay’ and some should be signs of brokenness. Why is it okay for a person to be bad at doing math, but wrong for them to be bad at understanding body language?

Don’t try to change what cannot be changed. Accept it, understand it, and from that beginning we can work towards making a world where simply being different isn’t a barrier to inclusion.

To be or not to be

Happy (belated) MLK day! Today’s post is going to be about minorities, but not the type you’re probably thinking of. No, today I’m going to write about the constant question that invisible minorities face–whether or not to let others know about their minority status. This is an especially difficult question for people with disabilities that aren’t immediately obvious, because asking for needed accommodations intersects with the decision to disclose their status.

Since I’ve been diagnosed as being on the autism spectrum, I’ve wrestled with the question of how open about it to be. For the most part I’ve kept quiet about it. Partly this is because my own difficulties are minor, so I don’t really need to ask for accommodations, making my autism something of a non-issue. There’s also an ideological component as well, because if I do need accommodations, it shouldn’t matter that I’ve been diagnosed as being autistic, just that my needs aren’t being met.

The last part, though, is a desire to not be defined by my austism. It’s not the whole of who I am. On the other hand, though, it has always defined me in some way. The troubles I had growing up were a result of being autistic, even though I was undiagnosed. Not knowing didn’t stop those traits from being apparent to the people around me, nor did it cause them to treat me with any more respect.

In some ways, the diagnosis has been a relief, because it gives me a way to not only see how I’m different, but figure out how to cope with my differences. It has also been a way to connect with others who have dealt with the same issues I have, which has been both uplifting and a confirmation of my deepest fears. It’s nice knowing that I’m not alone, yet I’m also looking at reflections of my own experiences with not being accepted because of being different. I fear being open about being autistic because of those stories. And it sucks, because I feel like I’m hiding something. I don’t like hiding something that I’m not ashamed of, and I hate that I have to consider the possible ramifications of being open about it. The burden of not knowing why I was different has been replaced with the burden of knowing why I’m different. (Don’t get me wrong, I vastly prefer the latter, but the fact that it’s a burden at all strikes me as fundamentally wrong.)

Ideally, none of it would matter. My differences, and those of others both like me and different from me, would simply be accepted the way our culture so often claims to do.