11:41am February 1, 2014

A lot of nondisabled people don’t WANT disabled people to be part of society.

They don’t always know that they don’t want us here, but they don’t. They’re so uncomfortable with their disabled relatives that they stick them in nursing homes, group homes, mental hospitals, and other institutions, and just conveniently never visit. They leave their friends, spouses, and relatives (or force us into institutions and never visit, see above) as soon as it’s clear that their disability is going to be permanent. We can be real people one day, and disappeared overnight into a world where we’re expected to stay until we die and be taken care of by people who are saintly for even consenting to be in the same room with us (but who actually tend to be abusive and neglectful because the institutions ensure that it’s difficult for them to show us any humanity they might want to show us).

And I think part of it is that we remind them that they are fragile, and we remind them that they are mortal, and that’s too much. They pity us so badly they’d rather die than be us, and they assume it’s normal for us to want to be dead as well. And disabled people notice that when they write stories about us, death is acceptable, and cure is acceptable, but life in between is intolerable.

Medical professionals, who in theory are supposed to be used to us, often see as as signs of their failure. We make them as uncomfortable as we make other nondisabled people. Sometimes more uncomfortable. There’s a reason that they routinely rate our quality of life as considerably lower than we do. There’s a reason that they are highly uncomfortable with long-term or permanent use of the technology that allows us to stay alive – feeding tubes, vents, catheters – even though they are the ones trained to insert and operate that technology. They try to teach us and our families to fear that technology, even when it’s a good idea, even when we do want to live longer… and they think they’re doing us a favor.

To most nondisabled people, most of us are totally invisible. Especially those of us living in institutions. And they think those institutions, such as nursing homes, are just the inevitable place where we have to live. They think that’s the only place where we can get the assistance we need, even though we die sooner there. They even assume that it’s natural for disabled people to die of completely nonlethal disabilities, just because the mortality rate of nursing homes and other institutions is so high and that mortality rate is thought to be because of something about us, rather than something about the way that nursing homes are dangerous to us.

They think that if they do the right things, eat the right foods, exercise the right way, then they will never be us. And by extension, they think that something about the way we ended up (or the fact that we remain disabled) is our fault. They want to believe that these things are within their control, because they don’t want to believe that disability, illness, and death are part of life for everyone. They can’t handle vulnerability and mortality and they project that fear and disgust onto us. And many of them actually actively try to make sure that we disappear, either into institutions or into death.

So if anyone ever tells you that nobody hates disabled people, you can know with absolute certainty that they are wrong.

(Posted long after I wrote it.)

Notes: