My sleek new power chair is called the Pulse Six. Sexy right? I call her Gianna (GoGo Gidget). With her speeds, I don’t even have to pretend I’m interested in speaking to the four various men who told us we were pretty today.
I like to drive just to drive. On grass, on sidewalk, asphalt, pebbles, dirt. Anything. Some people like to walk. I like to cruise. Sometimes I go slow and look up, down, all around me. On days when I don’t have a schedule, or have enough time in between things I have to do, I like to get out of the house as soon as possible and take my time. I couldn’t possibly express to you all of what one sees from a power chair. For one thing, I notice other power chair users, usually older than me but sometimes not, and we always have enough time to catch each others eye and share a nod. Bike users talk all the time about the unique experience of being on a bike instead of a car or on foot. Bike punks rave about their independence and freedom.
Does a wheelchair look like freedom too? Because it is. One time I zipped past a man standing with his friends on San Pablo and he yelled, “I feel bad for you.” How strange. Do I look like I’m having a hard time? Racing past him faster than he could probably jog with the wind combing through my long hair and knocking stray tendrils free from my lipgloss smacked smile? I guess I feel bad for him, that his perception is so skewed by what he has been told about disability that he can’t notice something in front of him begging him to change his preconceived notions. Or I would feel bad for him, but I don’t really have time.
I got my new power chair, Gianna, this past Tuesday, after my old power chair, Quickie the Emerald Knight, an adapted manual, finally threw in the towel five months ago. I was without the assistance and independence of a power chair for five months. I honestly can’t believe I went that long. Although I have gone that long as a younger person, crust punking and houseless, and it was a wear on me then too, a wear I didn’t want to admit. Because using a manual was tough. More DIY. Easier to get in cars and trucks. Easier to carry up flights of stairs. Easier to push my disability to the side in a manual chair. Easier to be hardcore and claim I could do whatever I wanted, easier to pretend it was a bike, and not a chair.
The thing is, both of my chairs are more precious to me than a bike could ever be. I know people can have intimate and beautiful relationships with their bikes, but if one of my chairs gets stolen, I don’t feel bummed until I can find a new one. I stop functioning. I have toughed out the situation of having no chair many times, but it is not okay for me. Just because someone has the use of their legs, or a bike, or a car, or any other assistive technology, does not mean they don’t need people. We are constantly being sent the message that we can equip ourselves enough in order to need people less and less. The more money and access you have, the less you will depend on people, the more choices you will have, and the more power over people you will have.
Over the past five months I have needed people a lot. Sometimes in ways that I perceived as a strain on them. I am 24, on medi-cal and a low income budget, and cannot afford a PCA. In fact I have never considered having one. As a younger punk, I believed that mutual aid would always find a way. In many ways I still believe that, but I also like to think of it as collective access. Less of a two way equal exchange and more of a rhythm and culture of a network/community of people that have one another’s access needs and best interests in mind. My friend SB has a car which they would drive me to appointments in. They are also low-income and disabled, and many nights of the week they would come to my house and we would have a big family dinner with my other queer family. Despite the sweetness of this rhythm, however, I need more support than rides. It affects my self-esteem and energy levels to wake up every day wondering not only how I will get to grocery store, bank, doctor’s office, therapy, but also just to a park, a coffee shop, my friend’s house. Not surprisingly, mobility impaired people sometimes like to leave our houses for more than the bare necessities. I have a life. A pretty big, juicy one.
So I had to embark on the process of applying for, being assessed for, and ordering a new chair. I’ll save you the gorey details, but after working up my nerve and pursuing the best protocol for three and half months, I waited six more weeks after ordering my chair to hear if anything was going to happen. When she finally arrived it was like drinking water after being dehydrated for days. I remembered eating pineapple, first nourishing fruit/non dried meat or sodium drenched junk food I had eaten in four days in the south once hitchhiking when I was 20, and I cried. Getting into this chair and driving her home was like that. I keep crying. And smiling.
I had my first physical therapist when I was three. She taught me how to dress myself. When I was a teenager and young adult, still sometimes, friends or lovers would help me into or out of finicky buttons, zippers, or ties. My mom used to tell me that I should get clothes I couldn’t put on or take off myself. I shouldn’t get purses I couldn’t carry myself. Shoes I couldn’t put on or lace myself. I shouldn’t go places I needed help to enter or exit. She warned me of people’s potential resentment if I asked for help too much, if they felt obligated, if I took too long getting ready or leaving, the dangers of able bodied passive aggression. In many ways it’s good for me to keep this in mind. I have come to communicate very directly and ask questions. I find it is my own responsibility to provide logistical access for myself. However if people want disabled people to attend their parties or get together’s they have to communicate about access as well. What my mother’s unfortunately also provided was a sense of guilt. In a particularly tense moment, when I was crying and panicking over a break up, my mom told me that people would keep leaving if I let them do too much for me. That I was letting people do too much and that’s why they kept leaving. So essentially unless I perceived a way to become more independent, I was going to be alone. And also the goal of independence is to be able to live well and alone. What if that is not what we want? To carve out that kind of isolated space?
When someone lifts or carries my body somewhere, because I want to go where they go, I hold my breath. I hold my muscles compact. I exert with them. I feel guilty if I don’t. I have been holding my breath for the past five months. I have not had very moments alone outside of my house. I have felt that I needed to show people my heart, my love, to give them energy endlessly in order to make up for all that I was asking them to endure of my needs. I have learned, over the past five months, to realize that no one’s needs are a given. We are forced to communicate about them better and better every day, and to receive and understand what others need of us. I don’t want to apologize for my body or my needs any more. If I am without my power chair and need assistance, then that is what I need. And I hope I can provide assistance to someone else I love in another capacity. I don’t think codependent, too dependent, or highly independent are helpful terms. They demonize access needs, and are too static, they do not leave room for our needs or desires to change. I love to be able to leave my house on my own. Gianna helps me feel like a badass street punk and classy queer zipping from whatever I want and need to do to wherever I want and need to be. I am glad that I don’t have to ask for rides from every point A to point B now. It makes sense that I am exhausted. But I am not going to crash and burn and panic the next time I need something from someone. I am not independent. And I am not dependent either. These are words created to classify our financial status and our position within capitalism and a worker/owner economy. That is not how my body works. That is not how I ascertain my life. And you don’t have to either. You have needs. Share them.