This is me when I'm not doing the stuff for my regular blog. That means not necessarily as careful, not necessarily as able to do things, lots of things could be different than usual. I don't do trigger warnings, and I have genuine well thought out reasons that aren't just some kind of callous BS.
Ruth Sienkiewicz-Mercer gives a talk here. She wrote a book I really liked called I Raise My Eyes To Say Yes, and I liked her talk. I am not so interested in all the service system stuff surrounding it, but it’s the only video I can find with her in it at all.
I’d have much more time and patience for “We’re locking too many mentally ill people in prison!” arguments if the subtext weren’t so obviously “We should be locking them up somewhere else instead!”
As it is, they’re just tiresome.
It’s not that I have any major disagreement with Bill’s assessment of what we’re up against. Call it colonialism or just corporate American business as usual, the outcome is the same: “helping the handicapped” is a multi-billion dollar industry in which we are another product to be marketed. But at the same time that Bill condemns our nondisabled oppressors for their authoritarian control, their “in our name without us” tactics, their colonialism of us, his solution is do the same thing. What real difference does it make whether all the decisions about us are made by able-bodied people in the name of “for your own good” or by a self-appointed Elite Corps of the Righteously Disabled in the name of “for our own good”? The outcome is the same: power in the hands of the few with disempowerment for the many. This is change? This is progress?
Unlike Bill, I believe one of our primary strengths is our diversity, and that our best hope is to be as inclusive a people as possible, no matter how unwieldy that may be. From Jerry’s Kids to Jerry’s Orphans and all points in between. If we start by dismissing people as unenlightened, too unsophisticated to warrant having a voice in the discussion, we stifle their possibilities and ours. There’s such arrogance in assuming “I am the true revolution.” That arrogance is as dangerous to a progressive movement as is indifference or lack of education about our history of struggle.
That doesn’t mean I think we ought to be soft and make nice with folks who are clearly usurping our power or that I believe all points of view about disability are created equal. I see no reason to be patient when change is slow in coming or to listen politely to the excuses able-bodied people (or their disabled apologists) offer for excluding us. Even with all our thorny, extravagant differences, I think it’s safe to say that it’s time to adopt a hard-line policy about owning our own culture: “Absolutely nothing about us, without us.”
Cheryl Marie Wade, “Culture Rap: Disability Culture — In Name Only?”, Disability Rag, July 1996
Thoughts on aging, assisted living, and death
When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.
And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.
On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life.
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear. Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both.
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
Questions to consider:
When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
If I lose the ability to speak, how will I communicate?
If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking - your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.
“Agencies “serving the disabled” have complicated connections with medical institutions that they don’t want to jeopardize.”
Lisa Blumberg, “Public Stripping Revisited”, The Disability Rag, May 1996
I admit it, I was depressed. Depression was kicking the living crap out of me. So why didn’t I call up Jack? How come I’m not one of those middle-aged women who ends up sucking down monoxide in the back of Happy Jack’s deathmobile? I’m certainly as disabled as many of these women, more severely disabled than some of them. But disability isn’t really the issue, is it? What I feel and think about myself and my possibilities as a disabled person is.
I am one of the lucky ones. Very lucky. I have a disability cultural identity that tells me I am whole and valuable. An identity that tells me I am a survivor. An identity that teaches me that my difficult life is worth the struggle, that being alive even in a very painful limited edition body is worth it. An identity that reminds me that although my disability may feel like a tremendous burden, I am not a burden. I have a disability cultural identity that tells me I am worth it, whatever it takes, whatever it costs. And that I am not alone. To put it in the language of one of my favorite fictional characters, Frankie Addams, I have a we of me. We, the disabled. And because I have this vital we, I am not alone with my suffering or surrounded solely by the voices of those who would lay their easy pity and resentments on me.
Because I have this empowered disability identity, born of the independent living movement, taught to me by political activism, imprinted on my marrow by the example of Crips putting their asses on the line to fight for their/my/our freedom, I am able, even in this most difficult time, to tell Jack Kevorkian to park his van in his own damn garage, I want to live.
But this empowered Crip identity is not a granite statue steeling my resolve with a raised, gnarled fist, nor is it a symbol I can tack on the wall like a picture of Christ on the cross. It is a living, breathing, changing force that needs care and feeding like the rest of me. And like the rest of me, it doesn’t stay healthy in isolation. It begins to wither and fade, losing its ability to influence my actions. Community is the key to my empowerment. Connection. The holy we. The more days I go without community, the easier it is to feel overwhelmed by the medical portion of the program. The more days I go without seeing examples of the possibilities, the closer my finger moves to the dial: 1-800-SUICIDE.
Let’s face it, it’s not that damn easy to feel empowered even when you’re out in the world, fighting for change, involved, active. The struggle is awesome and the political. times we’re living in are certainly not making it any easier. But each time we do something to fight oppression, anything, no matter how small or insignificant it may seem at the time, we fuel our empowerment. Each time we make the decision, in this moment, not to take a pass, we fuel our empowerment. Each time we fight the natural inclination toward despair and insist on hope, we fuel our empowerment. And when we fuel our empowerment we greatly increase our chances of survival. And each time one of us deemed “a fate worse than death” survives, we make a difference, we change the world. Staying alive, especially now, is an important and powerful act of resistance. If you are one of the Crips out there using every ounce of energy to keep on truckin’ against very very heavy odds, I want to say thank you for your act of resistance. Whether you realize it or not, you are making a valuable contribution to our culture.
Cheryl Marie Wade, “Culture Rap: Why Do We Need A Culture?”, The Disability Rag, 1996
I can’t wait…
So my wheelchair cushions are here, both the seat and the back. The back cushion has a board on it to prevent the sling seat from bowing backwards. Both cushions are gel and very comfortable. My yellow duct tape arrived yesterday, my brown duct tape arrived today — they’re for decorating the wheelchair, since it’s kind of a boring black color. And now the wheelchair is on a UPS truck out for delivery, and I’m completely excited and somewhat impatient about it getting here. I don’t know whether there’s assembly required or not. I just know I can’t wait to start getting my body in shape to push a manual chair again.
And this is the first manual chair I’ve ever had, with the right size wheels. My legs are short and normally they’d make the wheels shorter so my feet could reach the ground. But it’s hard to push a chair with small wheels, compared to a chair with big wheels. So I’m really excited about having a chair with normal size wheels.
There’s all kinds of features that I want, but have to wait for because I can’t afford them all at once. They include:
- Elevating legrests.
- Collapsible IV pole (for my tube feedings).
- Oxygen rack
- Cane/crutch holder
And probably others I’m not remembering at the moment. I’m excited at the prospect of adding those and other features as time goes on. But for now I just can’t wait to be whizzing around the hallways completely self-propelled for once.
A few recent examples regarding issues of abuse and persons with disabilities illustrate some attitudes. Most of the nation was riveted by the plight of a young woman in South Carolina recently, whose two young boys had allegedly been kidnapped by a black man and murdered when he drove the stolen car into the lake. Later it was revealed that Susan Smith herself had, in fact, drowned her own children by driving that car into the lake. Thousands expressed their outrage at the violence and sympathy and love for the dead children. Hundreds of flowers, cards, and teddy bears were sent to the lake as a memorial. But there was no outpouring of apology and acknowledgment to black Americans for the horrible contributions to hate and prejudice Susan Smith’s original allegations created.
Not so far away a father murdered his 12-year-old daughter. When this came to light, many cries of sympathy were heard, and expressions of horror. However, these were in support of the father/ murderer (he admitted to the murder). There were no flowers, cards, or teddy bears for Tracy Latimer—she was a child with a disability. The father pleaded that her care was burdensome and that Tracy herself had no quality of life anyhow. The judge offered leniency in view of the father’s 12 years of dedication to the care of this child. But what about Tracy?
Nora J. Baladerian
“It’s a lot about acceptance. It took me 15 years to accept that I had any kind of a disability, even though I obviously do. It goes against our culture so much to actually accept something. We mistakenly think that if you accept something then you’re, like, dooming yourself. You’re resigning and totally giving up. It’s actually the opposite. In accepting it more, I can now live around it better . I can schedule things more efficiently and not cancel on people, the way I did when I was in denial about it. Acceptance of pain, in the last hundred years or so, has been discouraged by a lot of medicine. Pain has been considered fundamentally a psychological thing —- if you accepted it, that meant that you were mentally attaching yourself to it.”
Paula Kamen, Head Case, on Salon.com (via au-nte)
It turns out this is the wheelchair I ended up getting. I ordered the other one twice in a row, and twice in a row, from different sellers, they told me it’s actually on back order and canceled my order. Which annoyed me, because the listings are still up and say more than 10 available and then you get that kind of notice if you actually shell out the money for them. So two canceled Paypal payments later, I ordered a different wheelchair from the same manufacturer, and this is what I got. Then I ordered seat and back cushions. And I’m going to eventually order the IV pole and oxygen holder and everything, but I can’t afford that yet. I’m pretty excited though.