10:16pm July 17, 2014

Disabled people are not supposed to enjoy any aspect of being disabled.

youneedacat:

It’s this big taboo. Disabled people are supposed to be suffering, all the time. We are not supposed to enjoy anything about being disabled. If we do enjoy anything about being disabled, then people consider us suspect. They may think we are faking, but if it’s obvious enough that we are not faking, they consider us perverse. Worse than perverse. Something I don’t even know the word for. Something terrible.

I’m never going to read the book Tuesdays With Morrie. I am not interested in sentimentalized, manipulative, inspirational cripple stories dripping with glurge in every sentence. But I once, years ago, read a negative review of it that sent chills down my spine. Here is a quote from that review:

In this otherwise fake book, there is one true thing. It’s on page 116 where Morrie says, “And you know what? The strangest thing. I began to enjoy my dependency. Now I enjoy when they turn me over on my side and rub cream on my behind… I revel in it. I close my eyes and soak it up.” Yup, that’s the truth right there, Morrie’s truth, and a none-too-pleasant truth at that. But it’s just part of an even more macabre truth: Morrie liked dying. No change that. He reveled in the process, and delighted in the TV celebrity he got from it.

So basically the reviewer thinks it’s morally repugnant in the worst possible way, for a man with ALS to find anything positive in the process of being cared for. Mind you, every day people who receive this kind of care complain about what a burden it makes them, they believe it’s undignified, and many people literally choose to die rather than have to receive this kind of care. And our society has no problem with that, in fact it outright encourages people to think that way. Many of the reviews I read in order to find this one, painted Morrie’s life as a burden that should have ended long before it did, and his ability to afford attendant care that extended his life and added to his quality of life, was seen as greedy and selfish. Because disabled people are supposed to just quietly die and let the real people have the money it would take to keep us alive.

But seriously.

I thought of this review because I was thinking of how much I have grown to love my feeding tube. I love everything about it. I don’t just love the fact that it keeps me alive. I love the whole ritual of putting things into it every day. I love putting water into it with a syringe when I am thirsty. I love putting medications into it with a syringe. I love measuring out the medications in the syringe before I put them into the tube. I love just about every part of caring for my tube, except the ones that get physically painful (like leaning over the toilet to drain the g-tube when nothing else will get it to drain… that hurts my back after awhile).

And I love my daily routine in general. I feel like something is seriously amiss if I forget something, even something somewhat unpleasant like sticking Phenergan up my ass. I like interacting with my caregivers. They’re not friends, and never will be friends — that’s not a line I allow them to cross — but they are people I interact with regularly and I like them. I don’t have Morrie’s fondness for being washed (possibly because being washed is painful and exhausting for me), but I would not be surprised if a lot of disabled people do like being washed.

But all of this is supposed to be shameful.

I’m supposed to hate my tube. I’m supposed to complain every single day about having a tube, and how I wish I could just live a normal life. I am supposed to hate my life as a disabled person, and everything that goes with it. When I used a wheelchair, I was supposed to hate my wheelchair rather than view it as the tool of liberation that it was. When I spent six years in bed, I was supposed to complain about how awful it was and how I couldn’t live a normal life like everyone else my age. I know the drill because I see disabled people doing it all the time and I see nondisabled people approving in all kinds of ways.

Now, far be it from me to tell anyone how they should feel about their own disability. I’m not into hard-core self-pity and that annoys me when I see it being encouraged, as it is in some communities. But just not liking being disabled, without the hard-core self-pity, doesn’t bother me. What bothers me is that liking being disabled is not only not an option, it’s something people view as kind of disgusting. Like if you admit to liking something about being disabled, or worse, liking something about being cared for, then you’re the lowest of the low. It’s like people’s reaction when they catch you picking your nose in public. Only so much worse.

What is wrong with enjoying having people bathe you?

What on earth is wrong with enjoying having people bathe you?

What is wrong with enjoying dependency? All humans are dependent on one another. It is better to speak of interdependence, rather than that some people are independent and others are dependent. Why is it that being the one who helps is good, but being the one helped is bad, and enjoying being helped is downright evil? We all help each other, there should be no shame in being helped, being helped should not qualify a person as a burden, and enjoying being helped should not be treated like the ultimate sin against society.

Whatever it is, people would rather see disabled people suicidally miserable — hell, they’ll get right behind our suicidal thoughts and push us off the cliff ourselves and think they’re ‘helping’ us! — than see us enjoying anything about being disabled or being dependent on others. And there’s something supremely fucked up about that. Fucked up and dangerous to us. Very dangerous. I wish I could articulate why and how it is dangerous, but it’s one of the most dangerous of the common sentiments towards disabled people, that I’ve ever seen.

I’m not personally sure what part I am supposed to enjoy. I mean, I can enjoy other stuff. That isn’t my brain going wonky or my asthma prohibiting me from doing things I want. I don’t know. I’m only just starting to accept that my asthma is bad enough to be a disability after that one time I almost died at that one con. I am having trouble with this stuff. And I feel like my brain misbehaving with sensory overload and stuff hinders me from being productive or all that I can be, or whatever. and the same thing with the asthma. I KNOW I could do more. If my body and brain weren’t sabotaging me. I hate asking for help. Or slwoing other people down. I do my best to hide my problems even if it hurts me more in the end later. Because people are SO MEAN (often unintentionally) when they find out you have a problem. “you’re too young to be falling apart.” Uhh ok great. tell that to my lungs. I’m just so confused, and I think I spend so much time just trying to defend myself so I don’t get hurt by these kinds of people that I make myself worse, and I do my best to play normal which is taxing. I don’t have the ability to advocate for myself because I am just too frightened of confrontation in the real world. “It can’t be that bad.” You donj’t need—or suck it up, everyone has some problem they need to get over. I just… I feel inadequate. Broken. Like I am not the good producer I ought to be. Like my body and mind are holding me back. Like if other people know they’ll think less of me. That if I ask for help outside my immediate household, I will get mocked instead of help. Or told why I don’t need it or deserve it. it’s depressing. It makes me depressed and this article mad me sad.

OMG I didn’t mean to make it sound as if you had to enjoy anything about being disabled. Nobody has to enjoy anything about being disabled. Disabled people can enjoy being disabled, or hate it, or anything in between, any combination, and that’s perfectly fine, it’s our right to feel however we want to feel about it.

What I was saying is that there’s a stigma against disabled people who do enjoy something about being disabled. Like Morrie enjoyed being taken care of, and people looked down on him for that. And I enjoy my feeding tube, and people look down on me for that. People would almost rather see us miserable than see us enjoying anything about disability.

But saying that – my saying that – is not ordering everyone to enjoy disability. It’s just saying that apparently there’s a big taboo against disabled people liking anything about being disabled.

Notes: