as small as a world and as large as alone

6:07am July 7, 2013

radioactive-bunny-of-death:

So I always knew that Tumblr was 95% politics but where did AGEISM and ABLEISM become a thing? I mean… What?? What more could people complain about?? “I forgot to turn off my stove and I came home to a fire! #nonpyroprivilege #oppression"

Ableism has always been a thing, but the term dates back to the eighties I think. It wasn’t invented on tumblr. And while I don’t agree that everything people claim to be ableist, actually is, it refers to something extremely real.

The eugenics movement (and its modern descendents) was based on ableism as well as classism and racism.  People were and are removed from society, forcibly sterilized, and killed, for being disabled.

Right now, we have a society where it’s considered perfectly normal for disabled people to disappear. Into special schools, nursing homes, group homes, mental institutions, developmental centers, and other institutional settings. Against our will. For no good reason.

It’s perfectly possible for us to get the assistance we need, living in or own homes. There is no actual reason we need to be removed from our homes and put into places only for people like us. There are lots of fake reasons but those are excuses and usually false and based in misconceptions about disability. Yet it’s perfectly normal for us to disappear into places that actually are known to greatly shorten our lifespans, in the name of “taking care of us". That’s ableism. It’s not right and it’s not inevitable.

For instance, I fully meet the criteria for admission to a nursing home or an ICF/MR.  The only reason I don’t live in one is my state has a system where the money that would otherwise go towards keeping us institutionalized, can go to providing us assistance in our own homes.  I have a developmental disability waiver that allows me to get my services from an agency rather than an institution. 

Same services I’d get in an institution, except better and I’m in less danger of dying before my time or succumbing to depression from being forced out of my home. I get assistance with every daily living task, from bathing to tube feeding. In a less ableist society, this would be normal and the main option given to everyone. The fact that it has become normal and depended upon for an entire type of people to disappear to institutions just for people of our kind, is a manifestation of ableism. It has not always been like this and not all societies do this to their disabled citizens.

My friend, despite being competent, was not allowed to vote for most of her adult life, because she’d spent time institutionalized. Ableism.

I almost didn’t get lifesaving treatment earlier this year because my doctors thought I was better off dead, because I’m disabled. That is among the worst forms of ableism, and lots of disabled people die from being denied or talked out of medical treatment that would be routine for a nondisabled person.

Speaking of which, when people with many different disabilities (including some I have) are murdered, people tend to sympathize not with the victim but with the murderer. Murderers of certain disabled people are given less severe sentencing or are not convicted of murder at all, because we are not human enough to matter to judges and juries.  Even when we are blatantly tortured to death, judges have been known to describe it as understandable mischief gone wrong. That is ableism.

I once saw a developmentally disabled woman cleaning up garbage. A nondisabled man jumped on top of her and began sexually assaulting her. Everyone watched but nobody but me did anything about it. That is ableism.

I’ve been sexually assaulted in front of an entire room full of people. None of them did anything to stop the guy, not even the mandated reporters, because nobody thought I understood what was happening.  Some of the staff actually thought it was funny.  That is ableism.

I’ve been expected to live on a few meals a week because I’m disabled. That is ableism.

People’s reaction to my periodic inability to move was, rather than seek medical help, to beat me up and taunt me while teachers watched and did nothing. That is ableism.

I’ve been described as having the cognitive function of an infant, just because I was unable to type at the time. That is ableism.

Which reminds me, despite the fact that there are people who will call all kinds of words ableist slurs that aren’t, there are actual ableist slurs. Like retard.

There are well respected people in the field of ethics who want to declare some animals to be persons, while removing some humans from the category of person. Which humans would that be? Cognitively disabled people. I’d fall outside their definition of personhood at certain times in my life. That is ableism.

People with one of my disabilities are frequently seen as closer to monkeys, apes, and robots than to human beings. Even in scholarly publications. That is ableism.

Disabled people are frequently denied organ transplants on the grounds that our lives are not worth as much. That is ableism. (If it were really just that organs are in short supply, they would come up with a system of deciding who got them that did not discriminate against certain kinds of disabled people. Just as there are tons of other groups they don’t have to discriminate against.)

And that goes not just for organ transplants, but for very simple medical procedures to save people’s lives. They also try to avoid giving us feeding tubes, giving us antibiotics to treat easily treated infections, and all sorts of other very simple procedures where there’s no shortage of the treatment at all. That’s ableism.

Medical professionals routinely rate disabled people’s quality of life far lower than disabled people ourselves rate it. That’s ableism. (Hint: Disabled people rate our quality of life at about the same level nondisabled people do. Except when the quality of life assessment — meant to assess happiness with one’s life — is so biased that it automatically rates us lower if we lack certain physical or cognitive abilities.  Which is ableist in itself.)  Most people in general assume we are far more unhappy than we actually are, because most people hold ableist assumptions about what it takes to be happy. But that medical professionals do is particularly troubling because they are the same ones who use their faulty assessments to decide our lives aren’t worth saving. Some professionals have even been known to pressure families into turning off respirators before the person can wake up and discover they are paralyzed, because they assume it’s better to be dead than paralyzed, and want to take the choice away from the actual disabled person. BTW actual paralyzed people tend to prefer to live, despite media images to the contrary. That anyone is surprised by this is ableism.

The worst forms of ableism either actively kill people, or place us into situations where we will die long before we should. Anyone calling that imaginary or overreacting is… something beyond offensive. I keep having to fight for ordinary medical treatment that would save my life, entirely because doctors assume I’m not worth saving or that my life isn’t good enough to save.  The first time anyone withheld medical treatment in a deliberate attempt to kill me, I was 15 and my throat was closing. In that case it was worse than assumptions about quality of life, they actively hated me and thought they’d get away with exploiting a medical emergency to just pretend they hadn’t noticed. But I’ve also had the kind where they decided I’m just not valuable enough to save, or that I don’t have good enough quality of life for my life to be worth the effort.

For what it’s worth, I’m cognitively and physically disabled. I use such a large array of adaptive equipment that it’s hard for me to make a list. I live in bed, except doctors appointments, where I use a wheelchair. I type to communicate. I sometimes need breathing assistance and usually need supplemental oxygen. I have a feeding tube, one for feeding one for drainage. I’m in a lot of pain all of the time, never in my life not been. Some of my disabilities are congenital, some acquired, some stable, some progressive or fluctuating.

And none of that means I want to exist any less than anyone else does. If I didn’t want to be here, I’d have just refused the feeding tube like they all wanted and died of aspiration or malnutrition. And I’ve had several opportunities to die before that.

People may want you to believe that people in my position generally don’t want to live. And you might imagine (probably wrongly) that if you were in my position, you wouldn’t want to live. But most people in my position do want to live. We have the same range of happiness that nondisabled people have. I’m in fact probably happier than the average nondisabled person. (Do a search on hedonics, disability, university of Hawaii, if you want information about how this works.)

Anyway, just, yes ableism exists. If you’ve been able not to notice it until now, you’ve either lived a very lucky life, or you’ve absorbed and internalized it until it seems normal to you. I’ve been dealing with it my whole life. I can’t ignore it because if I weren’t fighting against it all the time I wouldn’t be here to tell you this. I’d be in an institution or dead.

So if you have been able to ignore its existence up until now, count yourself lucky. Now you know. And if, after reading this, you still believe none of this is actually ableist, I have nothing more to say to you, but I hope that some of your readers will have noticed my reply and possibly educated themselves. Hopefully by now you realize that ableism is real, is deadly, and is not just oversensitivity. There are subtler forms of ableism but on posts like this I try to stick to the unsubtle.

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