My boyfriend, Eric, his 5-year-old son, Aaron, and I arrive right on time. We should have gotten there earlier, though, because we have a hell of a time finding the place. You'd think that they would put out large signs, with cognitive and visual disabilities and all. But thankfully we don't have to walk too far before spotting it -- I mean, we were going to march, I couldn't spend all my energy wandering around in frustration.
It is a gorgeous day, one that feels like a dream to me because I have been trapped in the pocket of fog known as Marina for weeks now. That alone is enough to lift my spirits. I become excited and nervous when I see the crowd of wheelchairs and walkers. I push myself ahead of Eric and his son, forgetting for a moment my manners that would have usually kept me in step with them. It is hard to slow down and wait for them. I usually move faster than the people I walk with, did you know that? I am alone so often that when I am walking with people I find it difficult to match my pace with them. I have been trapped in my feelings of grief about my losses for such a long time -- has it ever occurred to me that I move so much faster now (as long as it is not uphill)?
I reach the registration table and get my purple band. I have to go and find my significant others so they can get theirs. Braceleted, I sit with Aaron while Eric wanders off to find a bathroom. The boy is busy playing with some wax-coated strings I bought for him weeks before. Who knew that something as simple as wax-covered strings could hold the attention of a five-year-old for so long. On the car ride up to Mountain View Eric and I had a semi-rehearsed conversation with Aaron. It had occurred to me earlier that a child who had never seen many disabled people, besides me, might be confused or frightened by such a large gathering of people with different-looking bodies and countenances. So Eric and I decided that Aaron might need a little pep-talk. We told him that he was going to see a lot of different people, some with missing arms or legs, some who acted in different ways than most people, some who were his height but looked like adults. You know how you are the shortest one in your class? Yes, he said. Does that make you weird or creepy? No, he says. If you get scared or overwhelmed, you can come and tell us, OK? Ok, he says, can we pretend the car's a spaceship now? Eric and I laughed. In the end it will turn out that he is totally unfazed. Adults overthink everything.
Lost in the crowd. I haven't felt this way since before the accident -- anonymous, unnoticed. I feel myself blend in, my boundaries soften, my mind begins to relax in a way I've forgotten. I am lost in the crowd, yet distinctly aware of the crowd itself being a spectacle. At least we are all a spectacle together. There are other strangenesses here as well, besides us: a trio of 49er cheerleaders, along with a man in a huge, foam 49er costume; police cars closing off side streets; speakers blaring every generic celebration song you can think of, at 10 in the morning on a Saturday.
Lining up for the parade. Or is it a march? I like "march" better -- "parade" is more something to look at without much purpose. They start playing "Let's Get It Started" by the Black Eyed Peas, which is thoroughly confusing to me, considering the original title of the song is "Let's Get Retarded". Are they ignorant of this? Are they celebrating the fact that the group changed the song after an outcry? Are they playing it as a middle finger of reclamation? I prefer the latter.
My boss rolls up to me to say hi. I knew she was coming. No matter who you are, meeting your boss in a non-work setting is always awkward. Do you abandon the mental hierarchy? Do you throw caution to the wind and curse like a sailor, as is your nature? Will this reflect on you when you get back on Monday?? I err on the side of caution, which humans have been doing since the first cave cubicle.
While we wait in line a woman and her daughter come up to me; the mother tells me her daughter wants to ask me a question. My mind automatically preps my mouth to say "a car accident", an answer that has been burned into muscle memory. But she doesn't ask that, she asks me what my sign means -- "No Longer Silent". It's because I'm finally standing up for my rights, I tell her. Of course no one's going to ask me what happened. They all know that doesn't really matter, that that's in the past, that what matters is the here and now. They know it because they live it, just as I do. People with intimate experience of disability are much more likely to ask you what your disability is, not What Happened To You. The latter denotes tragedy; the former is much more relevant to who you are.
We start to march, finally. There is a coffee shop right next to the plaza we start from, and it is full on such a beautiful Saturday. Stares, oh there are stares. Bafflement, surprise, sad smiles. Disability pride parade? How touching. They think they have something to be proud of. Do these coffee-shop people even get that we are fighting for basic human rights? I don't know. What are they seeing? I wave to them. One or two wave back. Soon enough they do not look anymore. It is as if the everyday, able bodied person-to-disabled person interaction is being played out in macro: crowd of able bodied people stares at crowd of disabled people, then able bodied crowd remembers itself and stops staring. The difference is this time we want to be stared at. I have been on stage, I have given talks, I have now been in a march and still I have discomfort with putting myself in a place where I am making myself stand out on purpose.
Maybe they stop looking because we are looking back. We are throwing their fragility as humans into their faces, we are putting it up on the big screen, inescapable. It would take a real asshole to think that they could pretend not to see. As we continue down the road I am proud to see the police cars blocking the side streets. They give us a legitimacy that fuels the righteous anger inside me. Eric makes the joke that they are there to make sure we don't riot. It's funny, but at the same time I'm thinking, well, why shouldn't we, when our signs say things like "Our Homes, not Nursing Homes" "Equal Rights for All" and "No Longer Silent"? Isn't that enough to be inconsolably pissed about? Besides, Occupy has taught me that paddy wagons are apparently not accessible. What could they do after they arrest us? Nothing.
All this righteous anger, yet I still can't bring myself to chant. There is something deeply cynical about my personality that holds me back. I know that if Eric and Aaron weren't there, I might have done it. But Eric is as cynical as I am, if not more, and even though our personalities fit like puzzle pieces, this double negative silences me. All the time we've spent together complaining about the world strangles my ability to break out and shout that I can change things. But I can't put all the blame on this dynamic; I have always been deeply shy, and the sign I hold mocks me as I roll along silently. Hell, at least I am here. I promise myself that I will chant next year. When I get back to work on Monday my boss will tell me that her throat is sore, and I will be jealous.
There are about 35 people in all who watch the parade, apparently surprised at this seemingly-spontaneous gathering of disability. Didn't the word get out? This should have been done at 5 o'clock on a weekday. I want people to wonder why they had to take a detour home. I want to see crowds of business people, tourists, busloads of children. The people that I do see have a variety of reactions: most are smiling, some look stupefied and stumped, some are laughing and clapping along with the chanting. As we walk down the street I have a strange feeling. I am confused as to why people on the sidewalks do not join in. Intellectually I understand this this is our march, I understand how people not in the march would not want to intrude and take away from that.
Still, my gut wants to deny this separation. Maybe because that's what this parade is all about: we are just like you. I remember what it was like to be able-bodied; maybe this feeling in my gut that wants the two sides to be joined is about me wanting to join these two sides of myself, is about how I so desperately want to stop feeling like two different people inside. I keep thinking that this march is solidifying my disability identity; maybe it is not about moving from able-bodied to disabled, but about the fusion of the two, the erasure of the line that demarcates then and now and keeps my life defined by the hinge between the two. Disability is another language, another world, yet I am still a dual-citizen. This intersection of identities is not oil and water; red and blue mixed does not make redblue, it makes purple. What do we call the fusion of ability and disability? There is no term for who I am.
The parade ends at a space that is too small for multiple wheelchairs and mobility devices, but somehow it works; minus mutual understanding it would have been a mess. There is a stage where talent is showcased, speeches given. I am already worn out, though, after pushing myself under the hot sun and I can't find much enthusiasm for it, sadly. After a lunch of hotdogs and ice cream, some face-painting and bounce-housing by Aaron (Ok, I got my face painted, too), we are off. I begin to stress about finding our way back to the car; I don't want to have to push myself for much longer. Fortunately Eric's sense of direction is much keener than mine, so I let my mind turn off while he leads us.
I have never been in a relationship with someone who would come to something like this for me. When I first asked him if he and Aaron wanted to go, I was surprised at how quickly he answered. Like, Of course we'll go with you. It is so often that when I approach him about something and my anxiety has me staggering, he says or does something that props up my limping heart, something that builds the scaffolding between us. Of course we'll go with you. Of course.
This helps me heal my two identities. To him, I am not a disability, but still he jumps at the chance to dive into it when it matters to me (and often when it doesn't). I am not alone with it anymore. Even when I was still with the one who was driving the truck that went off the road, I was alone with it. Eric and I have known each other since childhood, he has seen the two parts of me. And he has come to me during the second chapter of my life and has accepted me.
Healing is about acceptance. We, the disabled community, need to be accepted to reach the final stage of healing where we are acknowledged as being part of the world. We need to be seen, not stared at. Known, not feared. Talked to, not about.
Marched with, not watched.