It Ain’t Exactly Sexy

When I read the interview with Judy Heumann on our need to have assistance using the toilet (“The great unspoken issue of our movement,” July/August), I kept wondering, “Why does this article bother me so much?” Although I admire Heumann’s willingness to tackle the subject at all, it bothers me that the language is so safe and careful in the discussion of what for many of us is a life necessity: the need to have the private parts of our bodies exposed and handled on a daily basis.

To put it bluntly — because this need is as blunt as it gets — we must have our asses cleaned after we shit and pee. Or we have others’ fingers inserted in our rectums to assist shitting. Or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies.

These blunt, crude realities. Our daily lives. Yeah, I know it ain’t exactly sexy. Not the image we’re trying to get across these days.

The difference between those of us who need attendants and those who don’t is the difference between those who know privacy and those who don’t. We rarely talk about these things and when we do, the realities are usually disguised in generic language or gimp humor. Because, let’s face it: we have great shame about this need. This need that only babies and “the broken” have.

And because this shame is so deep, and because it is perpetuated even by our own movement when we emphasize only the able-ness of our beings, we buy into that language that lies about us and becomes part of our movement, and our movement dances over the surface of our real lives by spending all its precious energy on bus access while millions of us don’t get out of bed or get by with inadequate personal care. Because we don’t want to say this need that shames us out loud in front of people who have no understanding of the unprivate universe we live in, even if that person is a disabled sister or brother. We don’t want to say out loud a basic truth: that we have no place in our bodies (other than our imaginations) that are private.

And, yes, this makes us different from you who have privacy of body. Yes, this is a profound difference. And as long as we allow our shame to silence us, it will remain a profound difference.

If we are ever to be really at home in the world and in ourselves, then we must say these things out loud. And we must say them with real language. So they are understood as the everyday necessity and struggle they are. How can we assert a right (for personal care) if we are too ashamed of the need to state it openly?

And we who are on the outside, living independently, using attendants for intimate care, owe it to those of our brothers and sisters still dependent on family care or institutions to tell the truth about the pain and struggle of this life as well as the joy and freedom. Informed choice. So that the person in the institution knows that even with this private need, you have a right to and can set boundaries on who touches you and how you are touched.

And what of the next generation? How will disabled children learn to love themselves and their bodies, how will they know they have rights to determine their limits, if we teach them shame by our silence, by our obvious embarrassment over this most basic reality?

We don’t want to say these truths because it doesn’t fit the new disability mythology of “the able-disabled.” It makes us seem weaker, more vulnerable.

OK. I admit it. I am weaker and more vulnerable than most nondisabled people and many disabled people, too. So throw me out of the movement. Take away my Crip Power button. But don’t make me continue the charade. I want these things to be private, too. But they’re not.

On a real practical level: If I can’t express openly what I need when my social worker comes to call, s/he’s gonna leave it off the IHSS chart and then there’s no money to pay for an attendant.

And if I can’t talk about the need, then I can’t talk about the choices either. And, yes, even weak, vulnerable cripples have choices. But if our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than live with these needs that take away our privacy and seem like such a burden.

We have an obligation to the next generation, to our isolated sisters and brothers, to stop skirting the issue. Stop contributing to our own self-hatred with silence and half-truths. Stop playing the media’s game.

It wasn’t Desert Storm, it was Desert Slaughter. It isn’t “using the toilet,” it’s having someone’s hands in your private hairs so you can live in the world. It’s a big booger of a deal. But it’s the only deal in town. And no matter how difficult, well worth it when you consider the alternatives.

If we can’t say these things in The Rag, then where?