Monday, November 5, 2007


(Woman in a Wheel Chair with an Able Bodied Lover #1, photo by Tee Corinne, 1979, copyright hers; I knew the woman in San Francisco who is the "able-bodied lover" in this photo)

I was recently written privately by a woman who writes highly-respected work (especially by me) for another blog, asking me for advice. She's "come out" as disabled and is about to transition to a scooter, and she wanted to know what insight I could offer. I'm respecting her privacy by not revealing the details of her letter, but, as I informed her, I'm going to share my reply here because it contains a lot of thinking -- mine and others -- about life in a wheelchair. Please do share it on. I'm going to be writing at least two more posts about disability -- fostering community access, and answering some theoretical questions -- in the coming months.

Here's what I had to say this week:

You're right, I don't much get ignored in a wheelchair. When I do, it's because I'm too tired/upset to cope or I've chosen to go into radio silence.

It helps to understand why people have a hard time dealing with those in a wheelchair. Their stupidity can be off the charts, coming from otherwise intelligent folks. Here's what I've figured out or learned from other crips:

(1) Seeing disability, actually looking at it, reminds them of their own fragility. Sooner or later, live long enough, they'll be there. It's one leg in the grave, doncha know. (I mean, if you have legs.) Fear makes people shut down.
(2) Seeing any kind of physical helplessness reminds people of when they were helpless and at the mercy of able-bodied people who were supposed to care for them: As infants and children. We were all treated as objects then, even in great families. We were preverbal and could not communicate our needs well. It was a harrowing experience, and nobody wants to remember the bad parts of it. You as a crip bring it up and, if what they are reliving is the preverbal period, they don't even know how to put it into language.
(3) Seeing you having a hard time (or what is interpreted as a hard time) makes them sad. They care about you. They want it to not be happening to you. People who don't know what to say to someone who's just had a death in the family, for instance, will likely also not know what to say to someone in a wheelchair.
(4) They're trying to remember what it's okay to say and do with someone who's disabled. Dammit, what was it that Marleen Matlin explained that time?
(5) Your assigned role is to be heroic, inspirational, brave, self-effacingly funny. If you don't play your role, it confuses them. (We call it the Christopher Reeve model.)
(6) They're wondering if you and your significant other still have sex, and if you do, what on earth is it like. (I'm not joking.)
(7) When they were growing up and saw someone visibly disabled, their parents hissed at them "Don't look." It's a hard training to overcome.
(8) They're afraid you're going to be unjustifiably pissed at them because they are still able-bodied -- that's the other role crips get to play in movies, etc., the out-of-control angry/depressed gimp who can't seem to accept god's will and dumps on everyone around them.
(9) Despite the admonitions to "not look" and the cloak of invisibility you seem to don the minute you sit down in a wheelchair, the reality is that wherever you go, everyone in the vicinity is suddenly and acute aware of you. Looking at you sideways, wondering if they are supposed to help you. This means that not only YOU are the elephant in the room but also anyone who is your companion becomes an object of scrutiny. The general rule of not drawing attention to yourself, trying to "look normal" but "blend in", becomes impossible if you are with someone in a wheelchair.
(10) If you are anything other than skinny, if you smoke a cigarette or drink a beer or eat a doughnut, those will immediately become at least part of the reason you are in a wheelchair. (Especially if you're fat -- expect the kind of attack that the Right Wing levels on gays, particularly among so-called progressives.) And now that it is partly or mostly your own damned fault, they don't know what to say to you because why would you crap on yourself that way?
(11) Speaking of crap -- they're terrified you're going to smell bad up close. Or that you'll talk in a way that's hard to understand. Or drool, or spit, or jerk your arms. If they don't look at you, they won't have to witness any of that.
(12) They've heard that offering help is offensive, even if you clearly need it. They may have heard this from another disabled person.

(Dorothea Lange, famous photographer and movie-maker, 1936; she had a wizened right leg and dropped foot from polio as a child, and always limped)

What becomes clear, after seeing this list of what could be gumming up the minds of those around you, is that (a) you will have to try to read which one(s) are true for them, (b) initiate the conversation about it, with a sense of humor, (c) educate them on the spot, and (d) do it all over again maybe ten minutes later. In my experience, it's the only way to keep the circuits flowing. It sucks, and you will become furious about it eventually, but you can get through that too. It's the only route to having a good life. You are now Crip Guru.

What will help is if you have a friend or two willing to undertake this role with you, acting as your ally in public and your confidante in private. Which means they'll have to allocate a great deal of resource to deal with what comes up for them and, inevitably, Change.

If you have one friend who does that, you'll be better off than most.

What usually happens is that friends start off with grand intentions, but that Change requirement is a big, big hurdle. If you are their only disabled friend, for too many of them it's just easier after a while to drop out of the picture. They don't mean to do it, and don't make a conscious choice. It's just such a hassle having to notice if the store has a wheelchair accessible bathroom or to arrive early so you can get in the car or -- all the slow-downs and extra attention you have to spend now, they do too. Only they don't really have to do it, if they forget to tell you about the museum opening with your favorite painter coming next week.

I really didn't think this would happen with me, because I have tremendous inner strength, I had such an enormous network of friends, and I simply NEVER asked people to deal with my feelings about it all unless they offered more than once. I was shocked at who turned out to be the worst at facing my new reality -- folks in the health care field (some of them), folks who were great about liberation issues, folks with hidden or intermittent disabilities themselves. Who turned out to be the best were parents (natch) and 70's era feminists who went through consciousness-raising and learned, the hard way, that Change means more than rhetoric or intention. Plus, they already had that "Biology is not destiny" theory running regulator on whatever conditioning remained.

(The Broken Column by Frida Kahlo, 1944)

Luckily for me, in the five years or so before I became undeniably crippled, with the kind of rolling chimp gait that children point at across at mall, I went through two other cathartic changes. One was that I resumed having a relationship with g*d, after having chosen atheism at age 13 to get away from the toxicity of fundamentalism. Problematic as my faith is, at least it preceded being in a foxhole, so to speak, and I can trust I chose the change rather than being forced into it by desperation.

Secondly, I accepted that the abuse of my childhood had left me damaged. I don't believe such damage, even severe, is utterly permanent -- given enough resource, time, and motivation, I have a fairly open-ended belief that damage can be healed. Though few of us have enough resource and time, even if we find the motivation. Every progressive therapy and worldview I had encountered insisted that I not see myself as damaged, because that was somehow giving in to hopelessness. But I had the chance to dive deep with Staci Haines, another major leader in the incest survivor movement (author of the Survivor's Guide to Sex and founder of Generation Five), and when she labeled herself as damaged, I felt an enormous relief in saying "Me, too."

Intellectually, I knew it wasn't shameful to admit what had happened to me. I just had to forgive myself for letting it happen to me, after I'd forgiven all the people around me for not intervening.

This made it a LOT easier to accept having a broken body, when the time came.

I also found a new-agey type, Buddhist energy worker, who was willing to consider any possibility about what was going on with me but had no agenda for me -- a rarity. So when I was ready to look at the symbolism of having my knees go out, for instance (I'm a poet, metaphor is my life's blood), she worked with me only as much as I requested, in the direction I chose. When you're searching for a therapist or spiritual guide or whatever, I think that's an important early question: Are you going to have an agenda for me? If you think you see something going on for me that I don't agree is true, will you be willing to drop your own thinking and let me be the expert about my own path?

(Ripley with an Assistive Device.)

Practical suggestions:
(1) Figure out when/where you're likely to need help and write it down, then send it to the people in your life to eliminate their having to guess. Tell them they can volunteer (if that's all right with you), get someone else to organize it, and expect to have to remind them every so often.
(2) Always have something meaningful or restorative to do when you have to sit waiting on somebody. You will spend an inordinate amount of time waiting.
(3) Since you're getting a scooter, you'll be self-powered, but if you wind up in a manual chair for any amount of time, expect to have to train people how to push you. They will volunteer when they have no ability or sufficient strength, and put you at risk, then get huffy when you yell at them to stop because you're about to go over a 4 foot ledge.
(4) Carry your recharger with you everywhere and expect to have to hit up strangers (businesses, park police, etc.) for a recharge in case of battery death.
(5) For your significant other(s), expect that you will have to hear/witness/comfort their grief and despair about you. They realistically cannot always take it elsewhere. They should have another resource besides you, but for the sake of your relationship, they need to be able to bring it to you as well. You can actually grow closer through this.
(6) In my kitchen, I use an office task chair -- it's a lot more maneuverable.
(7) If you're buying a reacher, spend the bucks for a solid one. The collapsible ones die fast.
(8) If a bedside commode means you can pee quickly and drop back to sleep fast instead of making an arduous trip to the bathroom, returning tired and fully awake -- consider it. Your rest will determine your quality of life to a greater and greater extent.
(9) Everybody on urban streets prefer to use the cut-outs at the corners instead of stepping up and down from curbs. You'll have to compete for them with unconscious folks who step in your path. It will be tempting to run them down after a while, or at least honk at them, but -- well, that's up to you.
(10) Older buildings which have had to be retrofitted for ADA compliance (city halls, universities, libraries, etc.) tend to have access at the back, hard to find, involving scary elevators and dark walkways. Ask for company, and call ahead -- be insistent about knowing how to get in. This goes for bathrooms, too -- ADA compliance doesn't always extend to restrooms. And you'll need to set aside a little extra time. When I went to the Hirschhorn Art Museum in Washington, D.C., part of the Smithsonian, the elevator in the main lobby was not deep enough to accept my scooter (a common problem). I had to go to the loading dock and ride the elevator used to transport statues, a chamber 25 feet tall and 400 feet square. It took twenty minutes to rejoin my friends.

People want to do the right thing. They want to be good folks -- like Thomas, they yearn to be useful. So, exploit that gently. Tell them what's up right away, make a joke out of it if you can (but not seriously at your expense), and expect awkwardness pretty much everywhere you go. Right below awkwardness can be the most incredible sweetness and sincerity, and in my experience, it comes my way much more often than anything else because I'm open to the connection.


shadocat said...

Dammit, woman that must've been my pschic twin that wrote that letter. I, too, am contemplating getting a scooter, as I am tired of not being able to go anywhere but a Wal-Mart. Yet I fight it at the same time---I see the looks I get at the grocery store, and other places---I try to blow them off, but they sting just the same. And as my body crumples, I know I don't want to stay hidden away, I want to be out and see people, even if they don't want to see me! And here's my Frida in here too, one of my she-ros....god, I need to write you a letter.

shadocat said...

That's supposed to be psychic twin-jeezuz!

Maggie Jochild said...

Shado, I support getting a scooter 100%. There's a bias against folks going into a chair, especially a non-manual chair, but it's the same kind of thinking that wants to limit narcotic pain medications for cancer patients: Quality of life trumps moral values or outside agendas.

I'd love to get a letter from you, but I ALSO want to encourage you to write about your own experience -- you do great first-person essays. If you post something at your blog or MOC, let me know and I'll direct readers from here to over there.

Scooters ROCK.