LIFE IN A WHEELCHAIR

(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.

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IMAGINE MY SURPRISE

When I awaken to start my day, after I fire up the rockets on my PC and hit warp DSL, the first thing I do, of course, is visit Emailandia. Then spam dump. Then, most of the time, I hop on over to Orcinus or Group News Blog.

Partly this is because the two blogs I write for have a notification feature so if someone has posted a comment, I've been informed by email. And if I want to answer, I need to think about it a bit.

But mostly it's because what's a-hoppening at Orcinus or GNB is going to engage multiple layers of my brain, not just the political gecko but also my wobbly g*d interface, my funnybone, my "whoa I hadn't thought about that" child wonder, and my human gang loyalty. All at once. Their snark doesn't make you laugh meanly, and they have kickin' graphics.

I like waking up to my Lieutenant Ellen Ripley persona. Ripley rides my perimeter.

"I thought you were dead?" "Yeah, I get that a lot."

See, here's the scoop about me:

I don't take the pain meds prescribed to me. I don't smoke, drink alcohol, or use drugs. I drink caffeine once a day, if that, and chocolate maybe once a week.

I don't use terminology that others have told me is oppressive. When someone confides in me the ways in which they hate themselves, I am not persuaded that they are right in their self-doubt. I listen to children, always.

I have forgiven the people who failed me and tortured me as a child. I have forgiven myself for allowing them to fail and torture me.

I sleep eight to ten hours a night, when possible. I mute commercials. I buy halogen bulbs and brown eggs. I let myself cry.

When I masturbate, I don't fantasize about anyone I've ever known, even someone I haven't known personally. (Because I don't have their consent.)

I resist being pissed at g*d. I write my whole truth, but my ethic insists I try to inject balance and hope into it.

Somewhere early on, I decided to stay present, to move through this life awake and alert, and mostly I've stuck to that decision. Yeah, there were those episodes of leaving my body when he was lying on top of me, when I was 9, 10, 11. And a few tries at getting stinking drunk as a teenager. But those flights never became habit.

More than one person who believes in past lives have told me I am an "old soul" and that this is my last time driving down the block, this existence. First of all, I don't know how they can tell such things -- is there an expiration date stamped on my aura somewhere? And second, it's sad to contemplate. I like being alive and in a body. Yes, the ways we are oppressing each other is horrendous. Yeah, pain sucks. But being able to draw breath, to notice light and shadow, to feel air on the hairs of my arms, to speak a sentence out loud, to have a child climb confidently into your lap, to make pan gravy and then it over fresh biscuits -- heavenly. I want every second of it I can get.

As Terry Galloway once said, "It's a good life, if you can stand it."

My long-ago mothers left the trees and caves, exposing their small, fleshy bodies to savannah risk, building houses of clay and straw, planting grain, inventing grammar and nouns in unending torrents, and I feel like I owe it to them to keep on truckin', evolutionarily-wise.

So anything that bring out Ripley in me is a drug I allow myself. Those two blogs are Ripley friendly.

You can perhaps imagine, then, what it felt like to discover two posts referencing my recent post here about "My Knees, Part Three" and "Crip Ward Tango" -- amazing, eloquent posts, quoting me at length and going on from there to make dazzling connections. By Jesse Wendel and Sara Robinson (who writes for both those blogs).

Like Jesus, I wept.

What can I say? KTHX doesn't really cut it. I could sing something I bet Sara's heard often, "Here's to you, Mrs. Robinson, Jesus loves you more than you will know", wo-wo-wo. But then what would I sing to Jesse -- "I wish I was Jessie's girl..."? Alas, I'm an unreconstructed bulldagger. And I don't believe in the divinity of Jesus.

Still, sloppy smooches to you both. Let's keep cross-fertilizing, shall we?

And ya'll, go read the posts there, give 'em some sugar. While you're there, be sure to read the Are You Saved? post and follow the link back to Sara's article at Orcinus about the good news for modern (hu)man. I was going to write about it, but she beat me to it and, as usual, did an awe-inspiring job.

See ya at the sockhop. Bring yr flamethrower.

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