This weekend I bought a folding bike. I’m still using my wheelchair sometimes, and cane or crutches most of the time. When I tried Danny’s bike, I found out that as long as my knee behaves, riding a bike is easier than walking, and certainly hurts less. So it seems like time to step up my rehab efforts — from walking around the warm pool to biking! Plus, folding bikes are just cool. For Blogging Against Disablism Day I want to write about buying the bike, and how it feels to be getting stronger physically, but being in between.
I went to Warm Planet near the Caltrain station in San Francisco where they seemed to have a big selection of folding bikes. They got out some Dahon bikes for me to try. I really appreciated that they didn’t act weird that I came into the store on crutches and went out on two wheels. “Go right, then two blocks down and you’ll come to the bridge across the creek”. I was only going to circle around the little plaza but the guys in the shop encouraged me to go further. No one acted funny about my crutches.
I rode off feeling completely terrified despite my bravado. I didn’t take my backpack with folding canes in it. Off into the city — alone! Away from my car, and my wheelchair, and crutches. Only my phone to help me somehow if I got stuck. Well, it’s been years. I got off the bike and adjusted the seat, then wobbled off down the sidewalk. As I rounded the corner and looked ahead, paused and waited for the light to change, I started crying like crazy. I realized how incredibly and beautifully invisible I was.
I love my wheelchair! It’s lightweight, it’s elegant and lovely, I have great joy in moments of going downhill or around corners and spinning, and best of all it gets me around. I keep the raggedy old gate tags from airplane flights on the chair frame where I can look down and see them any time, to remind me that the chair helps give me freedom and independence to go anywhere. Well, anywhere that laws attempt to force airlines to let me and my painful unreliable limping legs and my wheelchair on the airplane and anywhere my massive privilege and credit card pay for me to go.
It seems very unfair that a bike – just another metal device with wheels and tires – should mean something so different than a wheelchair. They’re on a sort of continuum! Or a graph with cars and couches and rolly office chairs! They’re just things that we use with our bodies! Why is everything so screwed up? Why are people such jerks? Why did Ruben Gallego spend ages in a Soviet nursing home and his friends die there when they should have been flying down the street, seeing everything and going everywhere, when people literally fly across the sky, and force others to be imprisoned by the structures we build and the ones we don’t build! Why is my friend Nick stuck without reliable home care barely able to go out at all (and “lucky” to have fought like hell to get out of being institutionalized) mired down in so many levels of bureaucracy it takes a whole team of people to dig out from under it? What will happen to my friends and family and to us all because of this ignorance and bigotry?
As I cried while flying down the street on this folding bike, I fell in love with it. I felt embarrassed for how I felt and hoped no one could tell, that the dudes in the store couldn’t tell and wouldn’t be thinking that I was having a sentimental or intense experience; I certainly wanted to hide that out of some mixture of anger at how other people let me know what they think I experience. Part of what I felt was really complicated sadness and anger and relief at realizing how *marked* I am when I’m visibly disabled, because I suddenly didn’t feel it any more, though I felt exactly the same in mind and body. That was unexpected. Part of it was like a little betrayal. I was *too glad*. I misplaced a bit of armor that I still need.
The road looked different. Distances shortened. I constructed a new map of here to there. Got out my phone, turned on My Tracks, and recorded where I was going.
I looked at a gravelly path and it wasn’t a barrier, all of a sudden. I could go down it, and wouldn’t be just stuck in the gravel. Crossing the street wasn’t a painful exhausting process of wheeling over cracks and bumps and gutters, bad curb cuts and the difficult crown in the middle. The roads all opened up. Completely surreal. Time and space folded. If you’ve experienced this shift of distance and effort, you should think of it as actual hyperspace. Your doors of perception get another doorway added on to the Winchester Mystery House of your brain and body.
At this point I was getting to be afraid again, not sure how far I could go. My bad knee hurt, and my not-so-bad knee hurt too. My calf and foot were basically freaking out and spasming so that I wanted to punch myself in the leg to make it stop. I got off the bike and sat on the bar that goes across from seat to handlebars, balancing and trying to rest and massage around my knee, staring at the 3rd street houseboats. Would I even be able to walk the half block to my car once I got back? What if I misjudged it all terribly? I turned around.
Rehab is difficult and slow. I’ve done it before. It took me from 1996 to 2000 to stop using a cane to walk and even then, I still ended up on crutches a couple of times a year. Seems like I should already know how to handle it emotionally, but it turns out not to be that easy. I swear I’m not complaining! I appreciate my good luck in this. I’m just saying it messes with my head.
I was waking up in a cold sweat lately wondering about my parking placard, which said “Expires June 2011” on it. I pictured going back to the DMV, and my doctor, and the DMV again to renew it. What if my doctor wouldn’t renew it? If she wouldn’t, then that was going to limit where I could go and what plans I could make for a long time to come. But would she think I was “disabled enough” or should be better faster? How would I explain? I cried when the renewed placard came automatically in the mail.
I’m on this cusp where, my hands and one arm are messsed up now too, and I can’t push myself very well in the wheelchair for long distances and am like, okay, I’m at this point where easily I could go for a powerchair just to get around, if my knees don’t get better. I’m not sure if my walking more is actually improving anything or just damaging myself more. I get through a day walking, but end up crying and desperate for painkillers.
At this point, I think I’m on my way to having more time walking, maybe walking without a cane. For a little while. I’m not sure of it. I can’t picture that it would last. I’d like to walk around San Francisco again and have that secret feeling where I go up a flight of stairs without visible effort and think “HA! My legs just did this THING! And no one KNOWS!” I remember classes at San Francisco State as being continual astonishment like I was whirling around in a sort of Escher drawing of stairs and endless corridors that miraculously, I could handle.
As I rode back to the shop I realized that now I could park further away. I could plan on going to a friend’s house in the city, and park blocks away and ride my folding bike to their door. What else? How far could I go? How far would I dare try to go? Can I even *think* that without making myself want to puke, as if caught in some horrible “inspirational” story!? I refuse to be in one, because I’m in pain and I’m politically conscious and I’m fucking pissed off!
Back at the bike shop. I pulled myself together and hoped it wasn’t obvious I had cried all over. I felt completely drained of energy. The bike shop dudes chatted and asked me questions and adjusted the bike for me. I bought it. I said how I had expected them to throw an attitude about the crutches and explained that I still use my wheelchair.
They then told me all sorts of stories of people using bikes for mobility devices, getting them certified, going on caltrain riding the lift because of not being able to carry it up the steps. One guy said he was unable to straighten his knee to walk well, but could ride his bike fine since it didn’t have to straighten. They began talking in a kind of visionary way about how more people who walk with difficulty could and should use bikes. I complimented them on their integration of the social model of disability. Maybe it was because of bicyclists’ radical politics? Are bike people not like general sports people? They’re like sports people who went through special consciousness raising? Why is it, really, that bike shops will fix a wheelchair, tighten my spokes, check alignment, give advice, without a lot of mystery and mystification, while wheelchair stores automatically act to take away disabled people’s power and act like the sleaziest sort of car sales con-men?
The Warm Planet guy shrugged. “We fit these machines to work with people’s bodies. And everybody’s body is different, that’s all.”
That seems very wise!
I’m going to have some more rehab time, I’ll screw up, exhaust myself, re-injure myself, lose some independence and gain it back, embarrass myself, not be able to live up to other people’s expectations, be an inconvenience, need to be rescued, cry on staircases, get stronger or sicker, but seems likely I get some more walking years out of this body. Things will get easier and easier. Obstacles will start to melt away for me, but they’ll still be there, I’ll still see them. I won’t lose my map of the world. I’ll keep my dual or multiple consciousness. It was hard to get. A lot harder than making my zombie leg move forward over and over. Everybody’s body is different and our bodies change over time in all sorts of ways, cyclically or not. We’ll fit the machines of the world to our bodies… that’s all…