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I. A Failed Revolution:

I wondered why it was that disabled people always smelled of bleach? No: I wondered why it was that other disabled people always smelled of bleach? I most certainly did not. This was proof that I was on the wrong bus. I held my breath and my tongue. I was curious about where this bus full of unmentionables would end up, but I did not want to draw attention to myself in case it ended up somewhere disagreeable. I didn't drool or hang my head limply. I didn't have a permanent toothy grin or let out horrid pinching screams for no reason. I did not smell like bleach. I had no doubt that no matter where this freak show was headed it would soon be realized that they had picked me up by accident and I would be sent home with many apologies.

No such luck. Before I knew it I was sitting in a blue classroom with children's drawings pinned to the walls and dozens of children pinned to their wheelchairs. A grown up was speaking too softly and slowly for me to take her seriously, asking each of us for our names. I listened only partly, my mind was elsewhere. My head hurt from the bright overhead lights and from the lack of windows and I suddenly felt overwhelmingly claustrophobic. None of the other kids were staring at me or my chair and this unnerved me. The condescending lady asked me my name. I thought momentarily about replying and to my surprise I suddenly felt communion with the kids and anger towards the woman. None of these kids belonged here any more than I did! It suddenly dawned on me that we were all being segregated in that room away from the "normal" kids like my sister and brother. So I did what any six year old would do: I screamed bloody murder for the next two hours until my mom came. They of course all thought I was just scared and so tried to sooth my screams with smiles and pats on the head. But I was protesting! I was trying to lead a screaming, crying revolution to end this condescending horror! Luckily for the teachers it did not catch on and I'm sure the other kids thought I definitely was the weirdest one there. I left with my mom feeling very disheartened that there wasn't a mass exodus of wild, flailing, and screaming handicapped children on the school lawn.

I escaped this, my only ever experience in a segregated institution, but the rest of those kids were most likely there through high-school. I was lucky in that my parents agreed and supported my revolutionary tendencies. Throughout my childhood they either home-schooled me or fought for my entrance into regular public school. They never once had to think of institutionalizing me because they could afford not to. To be honest I took this for granted until very recently and never really thought about where those kids would go when they were adults. I segregated myself away from all people with disabilities after this, partly out of my own insecurity, but also because it was easy to- there were none, they were all locked away.

II. I'm Not a Burden: I'm a Protestor:

I am writing this paper now in Woodstock, NY- a town famous for its hippie history, its progressive peoples, and its creative perspectives. Woodstock is not especially accessible for wheelchairs; the store fronts have steps, the curb cuts are scattered, and the buses are only accessible if you call three days in advance. Woodstock is not bad, it is simply normal, by which I mean, hardly ideal for wheelchairs. This always seemed to me to be simply the way things were. The whole world could not be accessible and I wouldn't want it to be, after all access usually means concrete ramps and smooth tiled malls. Access was my problem to accommodate and I did not expect much help, especially since I was the only disabled person I ever saw who wanted to go downtown or to the art gallery.

Thus, when I was trying to learn how to shop two years ago, my philosophy was that I had to learn how to negotiate since everyone was going far out of their way to accommodate me. I would have intense bouts of guilt and insecurity whenever I asked the cashier for help. That is, if I managed to force myself to actually enter the store. I would try to convince myself that people enjoy doing favors for others, or that even if they didn't like helping me, at least I'd be an interesting blip in their daily routine. I could not suppress this unease though (and still have a hard time) whenever I'd order a coffee or buy some groceries. I made them uncomfortable, I didn't want to do that to some one. The problem was all in me. I was causing unease and anxiety in people. I should stay at home and let my friends do the shopping and leave the poor folks alone. My critical mind told me that this was irrational- ugly people don't stay at home. People with annoying personalities don't stay at home. What if I want a bag of cookies and no one else does? Why should they go get them? Staying in isolation to help keep the streets full of beautiful, polite, well proportioned Americans, is not a very realistic or personally-idealistic way of going about my life. However, I still felt guilty despite this, even when I realized that in fact I demanded much less than many customers. The problem is that no matter how much an able-bodied person needs help, it never embodies what a slight favor embodies for someone disabled. When someone physically challenged asks for help it automatically changes from a favor (or even just part of the job) into a charitable act bestowed on the helpless. The favor is due to the disability and thus made into a larger issue. Thus a complaining needy customer can be given more respect than an individual who needs physical help from the cashier with the grocery bags.

Luckily around this same time I read an article in The Nation about disability. It was a short review of a book called Crippled Justice, by Ruth O'Brien. It was not so much the subject of the book that shook me, it was more that the article itself was simply the first thing I had ever read that mentioned disability theory and that used politically empowered rhetoric when discussing it. Now after much research in the field, I realize how simple and fundamental to the movement the ideas in that review were. The article was simple and not groundbreaking in its theory, it simply seemed so to me because I was completely ignorant of any of the ideas. Looking back now what seems groundbreaking is that I was introduced to these thoughts through The Nation, considering that the left's ignorance of disability is one of the disability-rights-movement's biggest struggles.

The phrase in the article which caught my imagination was: it's political not personal. Meaning that disability is not my personal battle to overcome in regards to access and discrimination, it is instead a political issue of economics and prejudice. The disabled community is a politically weakened identity group, being held back not by our own insecurities and limitations, but by the institutions which benefit by making it seem that way (for example the billion dollar Nursing home industry). It is no more our responsibility as disabled peoples to negotiate our discrimination than it is for women to negotiate sexism. Reading this phrase, it occurred to me that the only reason it was uncomfortable for me to go out was because others were not used to seeing disabled people. We are kept in our institutions and low-income neighborhoods, aren't able to get on public transportation, are kept out of the places we'd go by physical barriers and then stared at because when someone finally does manage to go outside it is a shocking sight to the able bodied men and women who don't want to be reminded that disabled people exist and that they'll inevitably become one. Honestly it is so surprising that even I stare when I see a disabled person outside, and I wonder how they managed to leave their house! Shopping has thus turned into an almost subversive act for me; I am not a burden, I am a protestor. The more disabled individuals are seen, the more people learn to negotiate interactions with crippled people and thus the less stressful these interactions become for both parties.

If I only shopped at stores run by my friends I would have very few problems with access. Not because they would help me, but because I would not feel like an out of place, "watched," customer. The thing is that most physical actions that are necessary for shopping I actually can perform, it is simply that they take more time for me and they do not always fall under the social guidelines and rules people are accustomed to. For example, I carry coffee mugs around in my mouth all the time when I am at home, however picking up a mug with my mouth when ordering a coffee is just not acceptable. One major misunderstanding about disability is that if one is disabled than they are not able. We are in fact largely able, it is simply that our techniques in physical action vary considerably from the norm. We reach the same end quite often, but it might look vary odd in the process. So why when some issues could be overcome with our own bodies are we still blocked from performing them? Because anything but normalcy is shunned. The goal of any shopper is to not stand out from any other and to put it simply, disabled people feel this pressure too. Obviously not all disabled people could shop if cultural norms suddenly disappeared, but it is interesting to me that many would. What that seems to prove is that it is discrimination and not the lack of ability that stops the disabled individual. It is political versus personal: a culture that hates difference causing insecurity in those that are different, versus an open-armed culture in which some insecure and helpless people happen to live.

The light had switched in my mind and I realized how much political rhetoric I had been internalizing. Woodstock did not grow from the earth naturally, people created it with all of their political power structures and prejudices as guides and architectural maps. Cities just like people have to change their habits and structure when they change their morals. There are no black and white segregated buildings anymore (of course there are not-so-blatantly-named segregated neighborhoods and city structures though). Despite their existence these buildings had to change when people demanded their civil rights to equal and NOT separate cities. Access is usually not costly. Building a ramp is usually cheaper than buying that oh-so-necessary extra TV for the hotel lobby and having our government pay for elevators is certainly much cheaper than the whole system of prisons for the old and disabled they are pouring money into right now. Stairs exist in a lot of places due to prejudice not necessity and the reason this seems so hard to believe is because the disabled who should be demanding their civil rights are locked away in segregated institutions like the one I screamed my way out of. I am not saying that stairs are unnecessary, I am saying that thanks to technology like elevators and wheelchairs that climb stairs, they can no longer be the excuse and reasoning for discrimination. Unfortunately for us disabled we are stuck in a catch-22 though: architecture can be changed (thus changing peoples perceptions on disability), but not until peoples perceptions change enough to give the disabled the right to live outside institutions. In other words, how can I demand access when I can't get to the protest?

III. Direct Action on Wheels:

Well a few of us managed to get to the protest and it was unlike any protest I have ever seen. My friend Christopher and I arrived in Philadelphia on September third for ADAPT's Free Our People March. ADAPT (American Disabled for Attendant Programs Today) is one of the oldest disability rights groups around and I happened to have been researching their history when I found out the march was taking place. What better way to study history than to participate in it? There was no doubt in my mind that I had to attend. No doubt, but much fear and distrust that a march of two hundred disabled people could really march 144 miles alone without some major disaster befalling them. Luckily my friend agreed to come with me to ease my 'what if..' worries.

I warned him before we arrived that I had never been around so many disabled people and that I might just turn out to be very full of prejudice myself, or that in any case there was a good chance that I would have a complete panic attack at the first sight of 'my people.' That first sighting happened the night before the march, when Chris and I happened to be crossing the same road as a few people in wheelchairs who were obviously with ADAPT. Panic I did and instead of acknowledging their crippled existences behind me, I pretended that Chris and I were in the midst of some very important philosophical conversation. That night was full of unease and I wondered what in the world I had gotten myself into. Oddly enough it was not the dangers of life on the highway that made me nervous, but instead it was the fear of being culturally isolated, of suddenly having to spend two weeks in an Up Up with People celebration. Images of Jerry Lewis telethons flashed through my mind. The idea of spending fourteen days with extremely religious, politically closed-minded, and aesthetically crippled individuals gave me nightmares. I became my own prejudiced enemy and I wanted to go back to my safe world of artsy leftist hipsters- my real people.

The run in the night before must have somehow shocked my mind into preparation for the next day though, because I was surprisingly friendly and excited. As I sat amongst all of the various body types, listening to the speakers singing and lecturing on reform, I felt almost giddy that I was one of these individuals. It started pouring down rain before we even started moving and it seemed that everybody's worst fears of wet broken wheelchairs would be a reality. Thankfully everyone had prepared just as neurotically as I had (my whole chair, joystick to wheels, was completely duct taped over with numerous layers of plastic), and so despite our wet bodies and clothes, we all felt quite powerful in the rain. We marched for about eleven miles that first day, stopping once in a parking lot outside a fast food restaurant and grocery store, to eat our lunch and unload the porta-poties (which would follow us around on a large truck for the whole march). The food, which was often donated by whoever our host would be for the night, was driven out to meet us at our stopping points, in a large RV by a wonderful vegetarian woman and her family. The various not-so-delicious options, were laid out on the ground or on tables if available and than each person was given and fed their food in their own unique way. I believe this first lunch break was the decisive moment when I decided there was no way this would work.

IV. Organizing Bodies:

Due to a fear of porta-poties, I was quite adept at finding alternative bathrooms. During this first lunch in the parking lot I discovered a bathroom in the back of an Arby's restaurant (one of the ironies of my disability is how grateful I am for the standardization of industrialization and uniform sprawl when I really need to pee). Unfortunately I was not the first to discover the bathroom and I was about the eighth women in line for the ladies-room. Everything takes longer when you are disabled, especially the complicated act of going to the bathroom. I am very used to letting all of my friends go ahead of me when waiting for a toilet, because three of them can go in the time it takes me to just maneuver my chair in there. On the other hand I am also very used to getting special bathroom privileges because it takes me longer and only some stalls are accessible. Thus, this bathroom line was my first ever "normal" experience waiting for a restroomÉ no lack of rights, but no special rights either. It terrified me and at first I did not see it as equal, I saw it as utter confusion. That line was in a way a good analogy for the whole march, in that to an outsider every chaotic thing seemed to take endless patience, but to a marcher everything simply ran at a disabled persons pace (which is basically unpredictable and chaotic, but it works). Because I was an outsider, it wasn't until a few days later that I realized that the act of waiting in line for people who take as long as I do to use the bathroom, was a liberating and revolutionary experience. These first few days were filled with experiences that I mistook for mass confusion, but later understood to be brilliantly organized planning cripple style.

Chris and I arrived with the marchers at our campground around five that evening. I think we were both slightly terrified of being still enough to talk to people and so we ran off quickly to a restaurant we had passed on the road. We were exhausted and still feeling pretty damp from the rainstorm. Eventually we walked back to the church that was hosting us. Our stuff was nowhere to be seen, we had not brought a tent, and we had nothing to do but feel very out of place. To be fair, I believe everyone was panicked that night. No one knew whether it would actually work and even the organizers had expressions of doubt. This was the first march of its kind and a completely unusual event for ADAPT, which usually organizes sit-ins and rallies. Chris and I were simply just picking up on the communal worry.

There were around one hundred and fifty people, the huge majority of whom were in wheelchairs. Each night tents would have to be erected and bed times scheduled so as people could be arranged in their beds and the wheelchairs could be taken from the tents to charge on ADAPT's generator. Many people could not maneuver themselves at all and so would need help preparing for bed, getting into bed, and trusting that their chairs would indeed be charged. The whole process had to be organized around accessibility: making sure that it would be possible to retrieve the right wheelchair for the right person and that both would be accessible and available if needed.

Chris and I had no tent and the sky still looked like rain. He was called on as an able-bodied worker to put up tents and so while he helped set up camp I tried to find a place for us to sleep and in the process had my first real conversations with the ADAPTers. We were all very curious about one another. As I would find out later, a lot of these people had known each other for years through ADAPT and yet few people were really close because they usually only met twice a year at the national actions. The vibe of the place was almost like a family reunion, in that people loved each other, but didn't necessarily feel close. I was asked where I was from, how many actions I had been involved with, etc; all the normal conversational pleasantries. I eased my way into it until I finally forgot the wheelchairs and missing limbs and honestly just felt as bored as I usually do in a crowd of one hundred people I don't know and assume I don't have much in common with. This was a breakthrough though: realizing my judgmental nature had nothing to do with my disability and everything to do with my character- or in other words that my own nature wouldn't be changed for the worst or the better for these people. This is not to say that there was anything disagreeable about these individual characters, they were just, like the bathroom line, very normal. My first truly equal opportunity experience being judgmental.

Everything was still crazy by midnight and we still had nowhere to sleep. Someone told us we could just set up our mats anywhere and so we went hunting through the church to find somewhere quiet. Luckily another person told us that children would be coming in at 6am for their classes, or else we would have given them quite the scare. We gave in, defeated and tired and hopelessly decided to sleep in the wet grass. Eventually we were discovered to be homeless and we were put in a large tent with two strangers. I was too tired to care where we were and so when our tent mate started telling us stories about sleeping naked and especially about sleeping naked with other people, I just fell asleep with my wet bag of clothes under my head and hoped that no one would drive over my feet during the night.

"Rise and shine everybody!" I could see the silhouette of a man in a wheelchair with a beard and pooffy hair. I recognized it as Bob Kafka's, one of ADAPT's main organizers. This would be my wake up call for the next two weeks. I looked at Chris sleepily as he exited the tent to go fetch my chair, which had been taken to charge on the generator. It was much earlier than what I was accustomed to, but the energy around the campsite was so lively that it didn't take long to wake up. Getting up seemed much easier than going to bed and it soon seemed like everyone was up in their chairs, drinking coffee, and watching the tents being torn down. As we had been warned, the little children arrived at around 6am and I think it was one of my favorite parts of the trip, just watching their terrified expressions as their moms insecurely rushed them through the mob of God's accidents.

We marched single file for sixteen miles the second day. By lunch Chris and I had decided that we would leave the next afternoon from the train station in Wilmington, Delaware. I was starting to feel that perhaps I was in the wrong protest. The march was to pass a piece of legislation called MICASSA (Medicaid Community-Based Attendant Services and Support Act, S.971 Ð HR 2032), which would amend title XIX of the Social Security/Medicaid Act. Social security is set up in such a way as to be biased towards institutionalization; as it stands we currently spend $82 billion a year on Medicaid long-term care, 70% of which ($56 billion) goes to institutional services. The money given to the institutional programs is federally mandated, where as states have total discretion when it comes to implementing home-based alternatives. MICASSA would create an alternative called Community Attendant Services and Support, which would allow the hundreds of thousands of disabled and elderly people who are forced into institutions ("warehoused" as ADAPT calls it), to have the opportunity to live in their own homes. Of course I supported this legislation and could see how institutionalization affects all who are disabled, but I also felt like it was very far from my own life. Probably two thirds of the marchers had themselves been locked away in institutions and so I was surrounded by people whose battle this really was in the most tangible sense. Looking back now, I think part of this emotion was actually just guilt, because there was and is nothing different between my situation and most of theirs, except that my family has money. Thus, due to income I have been living outside, relatively mainstreamed and normal, versus being warehoused my whole life because I have limited use of my arms.

Mostly I just did not want to be alone though. As a disabled person I am rarely ever alone and never am I alone when traveling. Chris had to leave to be back at work on Monday and since I wasn't feeling very comfortable with all these people even with him there, I seriously doubted I'd feel comfortable without him. We were also both exhausted. My chair had not made it the whole way and by the thirteenth mile I pulled over to the side of the road and waited with some other people whose chairs had died, to be picked up by one of ADAPT's vans. Actually while we were waiting, a mentally challenged girl came up to us and kept us company. She had seen us marching and was simply completely bewildered by the presence of so many disabled people. She did not want us to leave, or else she wanted to join. We saw many people like this during the march; disabled people who were shocked that such a thing could be rolling by their houses.

Chris and I hid in a restaurant again that night and I was completely convinced I could not take another day of marching (even the prospect of another night was about enough to make me cry). However, when we got back there was a meeting scheduled and everyone sat quietly in the Goodwill parking lot, which had been turned into a sort of tent city during the day while we had been marching. Everyone listened to the organizers. Sometime between when they were talking about what people should do when they need to use the toilet and how we had already passed the point at which it was the longest disability march in history, I began to have glimmering thoughts of sticking it out the whole way. With their open discussions about personal care, came memories of being completely insecure about such things before I had learned how to do them independently. There was so much confidence in this group and no guilt when it came to asking for help. I was thrilled to see people who were living as I wanted to be living- proud and not guilty. We slept under the stars, wedged between two tents in our own personal parking spot overlooking the highway. I began to feel like it was too weird of an experience to pass up.

No one thought I had any excuse to leave and it was obvious that no matter what reasons I gave to people, they all just thought I was a spoiled princess who couldn't handle getting a bit sunburned. I spent the next few hours flipping back and forth between staying and going. To the marchers there was no question: I should stay; there was no reason to leave. To my family there was no question: I should leave; there was no reason to stay. Chris just said I should do what I want. When it came down to it the only reason I happened to stay was simply a spontaneous two-minute-long burst of bravery; long enough to hug my friend goodbye and march pass the train station, with a fleeting sense of confidenceÉ

About an hour into it I regretted my decision and by the time we actually arrived at our campsite I thought I was going to have a completely embarrassing panic attack. I went and sat alone in a field full of plump furry caterpillars and stared despairingly at the tent city in front of me. I wanted to yell out "I'm crippled, I can't be alone! I'll starve and feel socially isolated!" I knew this was ridiculous though, for looking over the camp I realized that I was one of the least crippled people there. I have always considered myself severely disabled and I have never been around individuals with worse or equal disabilities to mine. One of the hardest things about the march was getting used to a world where my body was more able bodied than at least half of my fellow marcher's. I have what is called Arthrogryposis Multiplex Congenita, which limits the use of my arms and my legs, making it necessary for me to use a power wheelchair. My arms are practically useless and this always seemed to me to mean that I was pretty much severely disabled. However, many of the people there were far more physically limited than I am, but also in many ways far more independent. One of my favorite people I met at the march was Claude Holcomb. Claude was born pretty much paralyzed due to delivery mistakes by his mother's doctor at birth. He was institutionalized from the age of six for twenty years, until his PCA (Personal Care Attendant) helped him escape by proving Claude was smart and that he could thrive independently. Claude cannot talk and so he spells everything out on a wooden tablet that has the alphabet carved into it, which is attached to his chair. Uncaring and impatient (and also overworked) nursing home attendants often overlook such individuals. Claude, thankfully, was able to leave and he is now living in his own apartment with his wife who is in a manual chair. Claude actually helped me decide to stay by telling me that he could not physically do anything and yet he had been protesting for years. There went my whole being crippled excuseÉ

V. Meeting History:

As I was on the verge of tears regretting my decision, a man named Barry Rosenberg came and sat next to me in the grass. As I have said, almost everyone on the march had been involved with ADAPT for a few years and everyone thought it was pretty crazy to have this march as a first action. Thus people were very empathetic towards me and they did their best to make me feel welcome. Barry had seen Chris leave and was quite correct in assuming that I was feeling lost and so tried to ease my mind by telling me about ADAPT. Surprisingly, despite my research and the intense past few days, I felt that I knew very little about this "march for freedom" and its organizers. I reminded myself why I was there and decided that I might as well jump right in to continue my studies and so I gladly let him fill me in and keep me company. As it turned out he had been around during the founding of ADAPT in the early 80s. ADAPT had been started partially by Barry's friend, Wade Blank, who had been working in nursing homes in the 1970's during a time when many disabled were being transferred into them. Blank felt especially bad for the newly arrived young people, who were not only stuck in a home for the elderly, but whom were given no rights to control even the simplest of their daily decisions. After his suggestion of allowing some patients to be aided in their own homes got him fired, Blank realized a relationship with the nursing home industry was impossible. In her book Beyond Ramps, Marta Russel describes:

"Where Blank was going was past 'reform.' He proposed to emancipate disabled people entirely from the nursing home by moving them into the community. Blank wisely saw that the disability movement must go beyond the independent living concept to 'dismantle the plantation' Ð the nursing home plantations which routinely acquired disabled bodies and held them against their will- the root of institutionalized oppression. But the nursing home saw clearly that Blank's plan was counterproductive to its primary purpose. If people were to live in the community with attendants, Medicaid money would be going outside the nursing homes. The fact that disabled people's freedom would cost the nursing home a loss of income proved to be the dividing line between Blank and his employer, and it is the dividing line between disabled people and the nursing home corporate complex today."

However, before specifically battling institutionalization, ADAPT was at war with the public transit authority. ADAPT (originally American Disabled for Accessible Public Transit), started as a project of Atlantis Community in Denver, CO in 1983. Their goal was to make public transportation accessible to persons with disabilities, so that those people who had managed to live outside institutions could also participate in their communities. For seven years ADAPT blocked buses, closed off streets, and participated in numerous other forms of civil disobedience across the US, to protest for the right to ride. ADAPT's peaceful direct action demonstrations eventually paid off when they helped to pass the Americans With Disabilities Act (ADA) in 1990, which requires public transit be accessible. The next issue to fight for clearly was attendant services, so that at some point there would be disabled people to ride the new lifts. America has over 17,000 nursing homes, 2/3 of which are for-profit ventures. Today 1.7 million people are locked away in these "plantations;" 300,000 more are assigned to ICFMRs (Intermediate Care Facilities for the Mentally Retarded). To quote from ADAPT directly:

"Because of outdated attitudes towards people with disabilities which label us as 'sick,' our needs are seen as 'medical' and a huge system of institutional facilities has developed to provide for these needs. This institutionalized industry that has developed continues to use up massive amounts of funds to maintain the status quo. ADAPT wants to reverse the bias so that community based attendant services are the common option, and nursing homes are reserved for a last resort."

VI. Misconceptions and the Greedy Industry:

The assumption that I had that I would be one the more severely disabled individuals on the march, led me to also believe (even if unconsciously) that anyone much more disabled than me would never be able to be fully integrated into mainstream society. I imagined that someone needing 24hour attendant services could never live in their own home, unless they had a very supportive family network. As I have said, many of the ADAPT members did in fact need this much care, but to my surprise they lived independently. MICASSA has the money (Medicaid) follow the individual, versus disappearing in a nursing home. On average it costs someone $9,692 annually to have Medicaid Assistive Services. On the other hand, the national average annual cost to house one person in a nursing home is $40,784! Why then is Medicaid willing to spend more for our current system? When the money truly follows the individual, it means that it is also truly eaten up by the individual. Due to the physically and emotionally exhausting work that attendants provide, part of MICASSA is making sure people are paid a living wage. Thus the money really is spent specifically on care- care for the attendant employee and care for the disabled employer. Nursing homes however are big business and big business unfortunately almost always wins over common sense. 40 percent of all facilities certified by the Health Care Financing Administration have repeatedly violated standards, including critical aspects of patient care. This outrageous number lies in the fact that nursing homes are prone to cutting corners if it means making more money for their shareholders. To quote Russel again:

"The calculating corporate players have steered public policies towards institutionalization and away from citizen-controlled community and home-based care because institutionalized care is big business."

The "patients" these nursing homes supposedly provide for, are referred to as "beds" by the $70 billion industry. Each bed is a commodity and so of course the industry's goal is to have as many beds as possible, as cheaply as possible. This is a great plan of course if you happen to be one of CEOs of this mass industry. These are some of the richest people around and thus they are also some of the best campaign contributors.

Barry then took me to meet Larry Ruin, an old friend of Wade Blank's and a dedicated member of ADAPT for decades. Larry, who was in his fifties, has been arrested more than fifty times through out his relationship with ADAPT. He had in fact been protesting during the first actions for accessible transit, when the marchers would block buses and close off streets. Larry spoke in groans that only his closest friends could understand. He could hardly move his body and he used a catheter. I am saying this only to show how limited people's perceptions (including mine before the march) of what is possible are. Could such physically challenged people ever live alone?

In fact they can and do. Larry lives independently with attendant services and has for years. As we have seen, it is almost always cheaper to live outside a nursing home, even for people who need a lot of help. Many of these people were married. Many of them worked and all of them were tougher protesters than I've ever met before. Attendant services are based around the concept that the caregiver needs to be seen as employed by the disabled individual and thus, like any employee, has to perform his or her various jobs in a timely and professional way. This is of course also why aides need to be paid well and respected as people undertaking vary complex jobs. Thus if the employer has to go to the bathroom, it is the employees job to not complain. There was a beautiful amount of comfort regarding issues that most people are easily embarrassed by. Needing to "take a shit" was no more of an issue for these people than if they were needed to help reach something. A good aide/aided relationship is based around mutual respect and also humor.

I have to admit that it took me a long time to stop assuming things about people, but as soon as I did I realized just how independent all of them were. Most people have a few different aides, though some people do have a live-in attendant (usually in such situations they are also family or friends). Due to the intimacy of the work it is not uncommon for people to form very close relationships with their aides. Jennifer Mcphill from Texas, an ADAPTer for ten years, described to me how to tell a good assistant from a bad one, "Usually you can tell right away if someone is going to work out or not. Some people just see it as a temporary and easy job, but a good aide is someone who is dedicated and understands that you are hiring them." Thus severely disabled people who even I presumed to be "helpless" are living independent lives with attendant care, because they are given the power to control their own services.

As Michael Oliver argues in Politics of Disablement, notions of dependency are both created and supported by the very culture that fears them. The bias towards institutionalization, the American welfare system that punishes people who try to aide in self-support, and even the business of independence (counselors, organizations geared toward aiding the disabled, etc), all lead to a population that is supported in being dependent. There is a strong emphasis on independence and self-sufficiency in American rhetoric. America is the country where everyone has the opportunity to become independent. A person, if strong enough, can lift themselves by their bootstraps and own the American dream of a nice new car, a clean house and a good retirement plan; or better yet, he or she can live the new American dream and become rich, famous and beautiful. Independence is perhaps prized beyond all else in this country and for disabled people this means that automatically our lives are seen as tragically dependent. Oliver, like many disability theorists, argues that dependence is relative. We as a society are all dependent on each other. The difference between the way the disabled community sees dependence and how the rest of society views it, is that there is not so much emphasis on individual physical independence. "Professionals tend to define independence in terms of self-care activities such as washing, dressing, toileting, cooking and eating without assistance. Disabled people, however, define independence differently, seeing it as the ability to be in control of and make decisions about one's life, rather than doing things alone or without help." In this day and age, independence is more about an individual being in control of their own services (be it education, plumbing, electrical, medical, dietary, or personal care), than it is about an individual being completely physically self-sufficient; this is true not only for the disabled population, but for the population in general.

A huge part of the stigma attached to being disabled is that due to disabled people's physical dependence, they are seen as burdens, financially and personally. The more impaired someone is the more of a burden they are. In actuality the only reason that many people are burdens on their family/friends, is because they have no other option but to go it alone or be put in an institution. In our society it is not the impairment that is the only reason for dependence; it is our impaired welfare system. In my life I have experienced both extreme physical dependence and relative physical independence. I spent years as a preteen trying to figure out how to dress myself and take myself to the bathroom. This was out of a complete conviction that if I were not physically independent I would forever be a burden on my family and that I'd never be free to have my own life. Because of the way the personal care system is set up now, it is true that being physically self-sufficient in these matters has made my life easier simply because I do not have to worry about institutionalization or fighting for a PCA. However, my life has not changed that dramatically with the ability to pee or change my clothes when I want to and I have since realized how little it affected my ego or my daily routine. The issues that caused me worry during this period were not things that directly were caused by my physical limitations (I was physically not embarrassed by needing help), but were indirectly caused because of the stigma others attached to needing help and by the worry that these physical necessities could lead me into a life without choices. If I suddenly lost the ability to care for myself in these ways now, it would not be the handicap itself that would cause me pain, it would be the knowledge that I'd now be even more reliant on a greedy and unfair industry of "care."

VII. It's Okay To Ask For Help:

I did not fear my decision to stay on the march after this. There were many times when I wished the march would be over, but I never regretted my decision to stay. I spent the next few nights camping with a couple from Switzerland who were making a documentary on the march. I had met Mark and Mousang on the second day while we were marching. They had played a role in subtly convincing me to stay and so as payback they had to share their tent with me. I did find it amusing that the people who I enjoyed conversing with the most during these first few days, were two beautiful able-bodied people. On the other hand, they were also both younger than most of the ADAPTers and they were both artists; so I did not feel too guilty about my choice in companions.

One thing Barry Rosenberg had asked me was whether or not I ask for help. I told him, "I prefer very much not too." He thought as much.

Mark and Mousang were more than willing to help, but they were busy too of course and so I had to learn over the next few days to admit that I needed assistance from strangers. As I have said, I believe that when disabled people ask for help it turns into something very different than when an able-bodied person asks for help. This was not the case in ADAPT. No one felt guilty for not being able to physically achieve something and everyone asked everyone else for help all the time. People who could use their arms would help those who could not. People with cognitive disabilities were often aided by others who were mentally challenged. Frank, a blind man, was led through out the march by Ruben, a severely disabled man in a power chair. Able-bodied people were often helped by crippled people. The march was based on aide and collaboration and so much as I had to learn how to ask for help, I also had to learn how to help.

As I have said, my physical limitations turned out to be mild when it came to this march and so I was not a priority in terms of receiving aide and in fact it was often my responsibility to provide it. Each night I would find my things and carry them piece-by-piece in my mouth to my tent. I'd then blow up my little air mattress, unroll my sleeping bag, change myself in one of the porta-poties and then hunt for someone to take my chair back to the chargers. In the morning I'd wait for my chair, roll up my things and proceed to find myself coffee and food. Many nights before this ritual would take place I'd aide another individual by carrying their things for them or by finding other more able bodied people to help them if necessary. Cooperation was everywhere; people helping each other eat, pick things up, dressing, etc. During the marching itself people would drive each other's chairs for one another (driving is actually very hard on the hand and so people would need to pause and let others take control), or pull each other if someone in a manual chair needed a lift. One of the more ingenious ways of helping that I saw was provided by a man in a power chair named David Wittie, who had been with ADAPT for many years and who had taken it upon himself during marching hours to yell at anyone who strayed from the single file line we were supposed to be driving in. David would yell over and over again during the day: "keep it close and tight and to the right!" and he was not afraid to yell at you personally if you specifically did something stupid. He also had about seven different kinds of duct tape rolls attached to his chair and since duct tape was quite the necessity he was very popular. There was one day that Spitfire, one of ADAPT's favorite members (and someone whom we'll return to shortly), needed aide in driving her chair because she had a tendency to fall asleep while marching. David could not drive her chair with his left hand since we had to be in single file and so his solution was to tie a string around Spitfire's joystick and pull it along behind him. There was nothing funnier then watching Spitfire sleeping in her chair on the interstate as David Wittie pulled her along.

I did not personally learn how to ask for help until I paid the consequences for not doing so. The first day alone I did not want to bother anyone by asking them to help me put sunscreen on the spots I could not reach myself (even though there were people wondering around putting sunscreen on those who could not put it on themselves). By the time we returned to our campsite after all day on the interstate, I was bright red, feeling feverish, and about ready to cry myself into complete despair. The next day I asked for help with the sunscreen and I was given a lecture and about half a bottle of the stuff. In a day or two, a huge dusty pink umbrella was added to my artillery and I drove around in high fashion until I accidentally destroyed it in a porta-potie door.

One of my other favorite moments needing help was on the second night being alone. I wanted to write in my journal, but somehow it had fallen behind my seat onto the back of my chair. I sat stretching and reaching and reaching and stretching trying to grab the thing, for about ten minutes to no avail. Finally Claude Holcomb, whom I had not really talked to yet, drove up to me and reached for my book. I said, "no, no, you don't have to do it, I can get it." I didn't want him to be bothered because I assumed it would be harder for him. He looked at me funny, grabbed it for me and then instead of writing I talked with him and he told me about his relationship with ADAPT and about how much he loves to watch for birds in the clouds.

After this, asking for help did not seem so hard. However, it wasn't until the last day that I finally gave in and asked for help ADAPT style. During the last dinner, I finally admitted that feeding myself was difficult and that I needed help. Jennifer McPhill, herself in a power wheelchair, took my plate and my fork and fed me right there. It is not that I couldn't do it, it was just that it was a lot easier having her do it and she knew it and so she wasn't about to watch me torture myself with stupid, prideful, stoic habits that had no place in ADAPT. This is when I finally felt involved and at one with this group of marchers. Too bad I didn't loosen up sooner.

Aid was also needed in conversing with many individuals and often it was necessary to have someone translate or to be a translator for someone. When I first arrived at the march I was pretty convinced that many of the severely disabled individuals there were also mentally challenged. This assumption was based only on my own prejudice and it usually did not even occur to me that I was feeling this until I'd be surprised by the fact that someone was communicating intelligently and I'd realize that I had completely written that person off because they could not speak. This is horribly shameful for me to admit now, because this assumption is something that when directed at me always really hurt my feelings and made me very angry. It was a priceless realization though and many of my favorite people on the march were people I had originally not given credit to. I soon learned to love the mystery in communication that the march held and I realized how creative communication really is. The normal patterns of conversations are thrown off if someone cannot shake hands, let alone if someone cannot speak more then a grunt. By the end of the march I assumed nothing and I'd watch and learn the individual ways people communicated and then follow their lead. For instance Claude, who I mentioned above, communicated with his finger spelling out words on a wooden board. I became good at this and I enjoyed the fact that small talk was cut out of conversations with him and that everything was slowed down and everything, eye contact, facial expressions, and arm movements, became more vivid. The normal laws and rules of communication were broken down and each time it had to be reinvented I felt closer to real communication and understanding then I ever did with a normal nod of the head and "how do you do?" People used computers to speak for them, hand movements, body language, grunts and sounds. Many people could only be understood by those who had known them for a long time. Jennifer McPhill often translated for a man in a power scooter named Sparky (Sparkle as she called him) and so when someone needed to understand him she or another person who had known him for many years would translate his sounds. The main lesson learned was that all of these people, including the mentally challenged individuals, could communicate and that those who did not try to learn to understand them were the ones who were missing out.

VIII. The Goodwill of Churches?

Perhaps one of the greatest ironies of the march was in who supported us. Almost every night we stayed in a church parking lot, or outside of some historically disability centered charitable organization like Goodwill. Although it is not surprising that these organizations were our most common benefactors, it is a little bit ironic since the ideology that spawned institutionalization stems from these fundamental structures. The idea of dependency, of charity, of the disabled being "those less fortunate", are all historical subjects that still currently effect disabled individuals in negative ways and in ways which ADAPT is fighting.

I believe many ADAPT members had moral dilemmas with this issue. It was hard to be really grateful (which we all were), while also disagreeing with the basic philosophies that spawned their charity towards us. Of course it must be said, that all of these places supported MICASSA and our fight for real independence. Locally these organizations were wonderful to us, but symbolically we were eating out of the very hands we were fighting with. I felt like these people's hospitality proved that individuals in charities are often truly doing good work for the impaired and that relationships between disability and charitable organizations are not all damaging. Disability organizations like ADAPT are slowly getting the idea of independence out to disability charities and it seems more and more that these organizations are listening and are changing their rhetoric from "aide the disabled" to "aide the disabled in gaining equal rights." However, this is sadly not always the case and many disability charities simply have too much invested in the medical view of disability to support us in gaining real equality. One of these is the Jerry Lewis Telethon, which is much hated by ADAPT and which hates ADAPT in return.

I could not help but wonder if the fact that these charitable organizations were supporting us and MICASSA aided our cause symbolically (if they can support us, anyone can), or whether it might have negatively supported the classic image of the disabled, the church, and charity. Regardless of the misconceptions it might have brought about in local media and in shallow first conceptions, I actually believe now that this was a revolutionary step in the concept of disability and charity. For the disabled to be objects of charity (beyond being sick, unemployed, or poor), we have to first be seen as pitiable. By supporting ADAPT these organizations were going against their historical opinions and were supporting not charity but equality and pride; two concepts that are relatively new in the field of disability and all but nonexistent in classical charitable organizations.

There were many religious ADAPT members and so I do not mean to imply that religion is at odds with disability; of course not. However, perhaps the stereotype of the devoutly religious cripple is as much born from the fact that churches have played these fundamental roles in charity, as it is simply that disability can happen to anyone and "anyone" is very often religious. Thus, I think that even the most religious of ADAPT members would have understood the social and historical implications of the churches support for MICASSA.

I am not religious and neither was Claude. I saw him more than once roll his eyes at a religious comment. However, we were both incredibly grateful to be given places to stay. Letting two hundred wheelchairs, dozens of vans, and about twenty porta-poties camp out on your property is not an easy thing to do I'm sure; especially since we'd often arrive at around six pm and not leave until 10am and they'd sometimes cook us dinner. The tents were erected each day by a group of able-bodied ADAPTers who would work while we marched. Dozens of tents would have to be arranged on various sized campsites, making sure that spaces between were big enough for wheelchairs and that the tents were in the right order. From what Chris had said the first night about building the tents I'm sure this was very exhausting work. There were also the individuals who prepared and delivered the food to the various lunchtime and dinnertime locations and the individuals who spent the day driving around looking for abandoned marchers whose chairs had died.

The campsites were the only place where you could try to be alone. On the highway, even going single file, there was much talking to be done and by the time I'd get back I'd be in much need of some alone time. I don't know how it was, but the concept of "alone-time" did not really seem to be understood by ADAPTers and I would soon be discovered no matter where I hid. This led one person to muse that, "with ADAPT the only place to be alone is in the porta-potie." This is not an exaggeration. I am not used to being around so many people and at a certain point I would become very aware of the fact that there was no where I could go to be alone and so I found the next best thing Ð my cell phone. Talking on my phone was one of the only conversation deterrents I had. I would sit in the midst of the craziness, but be in my own bubble with friends and family. After a few days I became known for this (and for running off to any available empty field), and people soon were asking me "Sunny, why you always isolate?"

To me, I felt like I was doing anything but isolating. I thought I was being very friendly! I do not know whether this behavior was normal; whether most ADAPTers were used to having to be constantly around people in institutions, or even just with their PC's and thus simply adapted to such a social existence. Of course the opposite may be true and perhaps many of these people felt isolated in their daily lives and this action was a much-needed social outlet. Or maybe there was nothing unusual about it at all and what was weird was my own desire for isolation.

IX. If You Want Me To Move, Arrest Me (And My 300lb Chair)!

One of the only people I'd hope would find my hiding spot was Spitfire. Spitfire was a 57-year-old woman with severe post-dramatic-stress-syndrome and motor skill damage. Spitfire was the victim of abuse as a child by her father and as an adult by her husband who beat her and locked in a closet for months on end. She became severely malnourished during this time and thus experienced brain injuries, which caused her to have to relearn most skills including speech and walking. She was institutionalized for years after this and she says that during this time her self-esteem was so low that she behaved perfectly as a "good little cripple who did what she was told". ADAPT saved her by freeing her from the institution (ADAPT has a strategy of sneaking into nursing homes pretending to visit people, while actually what they are doing is talking to random inmates about their rights and how they do not have to be there). Spitfire soon became an ADAPT convert and now expresses her old-self as a completely different individual. She describes nursing homes as absolute hell. "There's nothing nursing and nothing home about a nursing home. It's like a prison." She says she'd "rather go to jail than go to a nursing home," because "In jail at least they have human rights."

Spitfire has her name for a reason; she is an unbelievably dedicated and radical protestor. She has been arrested 53 times (also for other protests such as a recent one in DC against the Iraq war), and is known by the police in many states as a rebellious protestor and by many disability organizations as a major annoyance. Spitfire was amazing to talk to because she was a living example of how people can internalize political repression and make it become their own insecurities. She had had the major political breakthrough after finding ADAPT, of realizing that her disabilities were not her fault; that she should not have to apologize constantly for her physical presence.

At the end of the march I asked her if she thought I would make a good member of ADAPT. She answered that I was on my way, but that I had a serious problem with apologizing and being polite cripple style. I laughed, but really I thought it was very observant of her and I know she is right.

Spitfire was not the only member of ADAPT to have an outrageous history with police officers. The majority of members there had at some point been arrested, or had tried to be arrested for their cause. One of the unusual aspects of this specific action for ADAPT, was that they had to stay on good terms with the officers. We were led almost the whole march by local police blocking traffic and shutting down lanes for us. This was a matter of great amusement for many ADAPTers who were used to practicing civil disobedience and getting locked away for their behavior, which due to it being against the industry of care was almost always illegal. This was made even more bizarre when we actually camped outside of a police department and just happened to be having a pig roast. We all enjoyed a good laugh at the irony in this.

It did make wonder what a scene with hundreds of disabled people getting arrested would look like. My experiences as a disabled individual around cops has always been that of privilege. At the anti-globalization protest last summer in DC, I realized my special position with the officers when I was let out of a surrounded block the police had barricaded the protesters in. They let me out because I was crippled and they didn't know what to do with me. However, surely if everyone had been crippled at the protest as they are in ADAPT, the officers could not get away with being so flustered- or could they?

ADAPT has been organizing for so long now that they are often known by certain police departments; thus the initial confusion has been slightly lessoned in these areas. However, even still there are few rules when it comes to dealing with disabled protesters that cops can systematically follow (since everyone is different), and this often causes a great deal of chaos and much anxiety for the officers. For good reason- how do you physically remove someone from a sit-in when the chair they're sitting in ways 500lbs (and when it is illegal and dangerous to remove people from their wheelchairs)? Most people have a hard enough time having a polite conversation with one disabled individual, let alone arresting hundreds of them. ADAPT is receiving less and less special treatment though and there are many stories of their protestors getting beaten up by annoyed officers. In a way I guess even this proves ADAPT is changing minds- even if equal opportunity is not always as nice as special treatment.

Despite the dangers ADAPTers were more than willing to put themselves in uncomfortable positions if they felt it would help the cause. They were an unbelievable mass of protestors, dedicated and passionate- not to mention very intimidating.

X. That Reminds Me- Where Is The Left?

So why then have the majority of people who care about such things as protests, never heard of ADAPT? Why when progressives are constantly looking for movements and energies and signs of change, do they never look in the direction of disability?

Perhaps it is because the progressive alternative culture is the one I have been raised in, that I am very sensitive to its ignorance of disability. I grew up as a hippie unschooler, with a painter as a mother and a mad scientist composer as a father. I hate using labels and so I will simply describe my surrounding community as an environment in which people praised creativity and difference and in which cultural norms were not the ideal. Or at least this was the unspoken rhetoric of an alternative lifestyle. Of course as soon as alternatives are set up, people who are innately conventional at heart find whatever standards there may be in these alternatives and create norms of differences. Thus there are rules to being a hippie, rules to being a townie, rules to being unusual, and on an on. Disability, as the most fundamental scream against normalcy, sadly even here, still gets lost in these norms of bohemia. Whether or not progressives treat disability worse than other groups is not the point, it is whether or not it is more hypocritical of them to treat disability equally bad.

It always seemed amazing to me as child how closed minded "open minded" people were. One of my earliest school experiences was with a Montessori middle school that I decided to attend. This school prided itself on its differences and on its students differences- but not mine. I was given a harder time trying to attend this school then any public school I had ever tried going to. They told me at first simply that I could not go, then told me if I did go I'd have to be put in a different building- meaning a different grade, then they said I could not attend without my mother attending with me. I quit by Christmas because I felt so unwanted in that environment.

I've had similar experiences trying to apply for universities. Many schools which one would guess would be excepting of my disabilities, were in fact the worst. The New School for Social Research (a notoriously progressive school), discriminated against me when I applied, along with about a dozen art-schools.

Usually I have worse experiences regarding discrimination if I am in a conservative crowd and there is no doubt in my mind that I've been lucky to grow up as a disabled individual at least around the rhetoric of difference appreciation. However, there is something sadder to me about discrimination when it comes from this area. Somehow when it comes to disability, even the most accepting of individuals often reverts to fear of difference and discrimination.

This is very clear in left wing media where disability is never mentioned. The lack of press on disability issues is not completely surprising, despite the fact that disabled people are known to be disadvantaged citizens; this is due to the fact that disability as a disadvantage is seen as a personal tragedy and so rarely worthy of news, unless as a human interest story (which does not seem to be the Left's preferred form). Disabled people are far from economic and social equality, but what is more, it seems that disabled people are far from being seen as a deserving identity group. While issues regarding sexual, racial, and gender equality are all at the forefront of political and social theory, disabled people are almost always left out of these conversations. The disabled are seen with sympathetic eyes as simply people who have experienced "bad luck" and whom due to their situations will always be subject to disadvantages. Unlike sexism or racism, disability by definition is the state of being personally limited in some physical or mental way and thus it is not a societal issue- or so the story goes.

The only news that covered us was local. There were many "Hey, look what was marching through our streets yesterday!" sorts of stories. If we got mentioned in national news at all I did not hear about it. This all isn't that surprising since almost all protests are shunned by media- even those where tens of thousands attend; but we were also shunned by the progressive media. The only mention of the march in any alternative news source, was an article written by my sister in the Nation. She had to pull teeth to get them to agree to run it and even then it was only available on the internet. It was only their second ever article on disability.

Many disability movements (including ADAPT), have tried to use there positions in politics and normalcy as a way to join other identity groups in the struggle for change. Sadly at this point it is the rest of the world, including other protesters, who are too closed minded to let this union take place. Disability has been ignored and in fact shunned by women's movements (largely based around misunderstanding regarding the issue of abortion), racial movements, gay and lesbian activists, and to a large degree even workers unions. Sadly, I think this proves that even the most culturally sensitive of people cannot look past a medical and charitable view of disability and with these old fashioned models of impairment it is true that including disability might water down their arguments for equality. However, these are outdated ideas and if people would take the time to educate themselves on disability politics, they'd see that there is a large population of individuals ready to aide in fighting for reform and who's very existences require it. The information is out there, disability studies is well researched and well argued, it is just that the only people who discuss the issues are the disabled themselves. Disability is an obvious example of the need for fundamental structural reform and I am surprised that people who desire change have not tried to aide our movement more. We epitomize many ways in which our political and social systems need to change. We are often born out of war, out financial inequality, out of pollution. My disability was a birth defect caused by a US airforce contractor illegally polluting my neighborhoods ground water. They buried toxic chemicals near our community's wells for over forty years, but did not bother to worry even once they were aware of the damage they were causing because my neighborhood was made up of poor Latino families and residents of a local Indian reservation. My case is not rare. Disability is often the outcome of a greedy and uncaring system. Impaired individuals themselves are examples of people whom "progress" has ignored. Who prove normalcy and physical perfection are just tools of greedy marketers. Who have value and meaningful existences despite the fact they do not often conform to conservative standards.

XI. Disability And The Lack Of Leftist Cool:

Perhaps it is just that I was raised in these subcultures, but to me it makes sense that disability should fit perfectly in the midst of the alternative lifestyle, just as it should in left wing politics. A lot of other disabled people seem to think so too.

The majority of ADAPT members were sort of accidental hippies and perhaps accidental progressives (it is hard not to be these things when your life depends on welfare and supportive social policies). However, to be fair, ADAPT is not a good representation of disabled individuals. ADAPT is made up of a very specific kind of person. Most impaired people would be unwilling to take part in ADAPT actions, just as most people are unwilling to take part in other protests. ADAPT is its own disability culture and a lot of it seems to be very aligned with other progressive lifestyles.

Why then is disability ignored in this area too? I do believe it is a lack of education on disability theory. However, for leftist media, lack of education is not a good excuse. So I guess the question is- why is there this lack of education in disability theory amongst progressives? My rather negative opinion is that it is simply because disability is not cool and not sexy. Part of this is indeed because of who has supported us and made our cliché images in the past. The church and conservative charities are not sexy and they are not often supported by the leftist community. As I have said, due to this lack of education, people also worry that disability will water down other movements and arguments, when in fact disability can often be a perfect example of how things are arranged ignorantly. Disability could quite possibly often be proof of the validity of certain arguments (for instance the fact that people should be valued for something other than work, or that pollution does effect humans negatively). This lack of leftist cool is a hard thing to fight, since it is hard to ever foresee disability as becoming sexy like many movements that have been co-opted by image have become. Picture incontinence suddenly becoming glamorous.

Of course, the point is that it shouldn't have to. If people sincerely praise equality and difference than they will have to get over praising "cooler" differences over others. Disabled people are the ultimate example of a movement and people that is formless. We cannot be co-opted because there really is no we and we have to be treated individually. This makes us harder to argue for and harder to jump on as a cool movement, but it also makes us a much more honest and real example of difference. And wait.. isn't difference cool?

ADAPTers were obviously attracted to difference and they embrace anyone who wants to join. The march was an amazing mix of ages and colors. People of all different nationalities and different social statuses. An old Mexican man would walk beside a young Chinese woman. Women and men shared control of planning and equally participated in organization. However, I did feel sexism from many of the men there (not the organizers), but I think this had everything to do with my being younger and them being from a more blatantly sexist generation. Not that this makes it okay. There were many times when I thought that in any other environment some of the comments would never have been acceptable and that if my arms had worked, a slap would have been in order. However, it is hard to tell if this is that different then any other group situation, or if it just shows that women are the victims of harassment no matter where they.

Oddly enough it was not only the men I felt harassed by; it was the women too. ADAPT has a huge percentage of gay/lesbian and bisexual populations. Some of the first advocacy groups for disability rights were started by gay and lesbian disabled people and so this population has gained much support in the movement. To be blunt, everyone it seems is bisexual with ADAPT and the older women were just as rude as the older men. Being rather naive myself, this aspect of the march is not something that occurred to me until it was in my face. Once again, it was hard to tell whether the sexual energy was unusual or whether it was exactly as it would have been at a Star Trek or Marxist convention, or any other grouping in which people assume they have things in common. As a homeschooler and as someone who avoids any sort of false communal settings such as these, this really was my first experience with this sort of interaction. It bugged me greatly.

I have nothing against sex of course, but during the march the prude in me came out full force. At first I was very offended by peoples comment's as I have said. However, eventually I started seeing it as almost another protest in action. Disabled people's sexuality is very repressed by the able-bodied world and I almost felt like ADAPT, with their outrageously open behavior, was just trying to free people from this repression. This does not mean I wanted anything to do with it however, and I lied more than once that I was married. I am sure that for many people these actions are some of the only times that they get to be surrounded by other disabled people and so as much as people are there to work, there is also a sense that they are there to socialize.

As I have said, I like to be alone and I am not the biggest fan of group settings. I am also admittedly judgmental in my nature whether or not people are disabled. Thus, to be honest I kept almost all contact with people at a distance and mostly discussed disability politics and peoples history with ADAPT members. I think the flip side of ADAPT's acceptance of everyone, is that in a way they are not very judgmental on a personal level. As much as I like seeing people get along, I think part of me does not like the idea of people being close only because they are disabled. I do not like the idea of only being friendly to someone because they have my same disability or any disability, but this is useful in movements when people are trying to aide each other in fighting for a common cause.

During the march I did make one very good friend; a girl named Bethany who has Brittle Bone disease; she was around my age. Bethany arrived half way through the march and was a life saver for me. Because of the intensity of this action, the majority of people there were older members and so throughout the whole march I was one of the youngest people there by far. Bethany was also a college student studying law and art and so we had much in common. With her arrival, I loosened up a bit to the other members (Bethany was very sociable), although I could not bring myself to enjoy their company as much as she could. She has since visited me in GA and we are often exchanging ideas for the movement and debating the culture. Bethany was very much worth the march.

XII. ADAPTing To A Political World:

By the time we actually got to D.C. I had forgotten that it would ever end and it seemed to me that I would forever be wandering highways and sleeping in random parking lots. Reading through this I feel like I have hardly begun to tell the stories and memories keep popping into my head. Like the night we slept inside of an ice-skating rink and woke up in a foggy frozen room. Or how we'd march by hundreds of dead butterflies on the highway each day . How we'd pause on the interstate under bridges to get some shade. How people would have to soak their feet due to sunburns and blisters at night. How we'd all sing- maybe not the best of songs, but still there'd be singing.

We sang and screamed our way into D.C., into Capital Hill and into the rally. Thousands joined us and we were greeted by hundreds of disabled people clapping. It almost seemed surreal, like we had won a race, not marched for medicaid reform. Bethany and I rolled in together, she was crying and I was yelling and quite delirious I believe.

My sister and her boyfriend Jeff had arrived the night before to join me on the last days walk. Seeing them had been the initial shock of joining the real world again. They were like my two able-bodied guardian angels that would ease me back into a walking world.

The rally was long and I remember being annoyed because we were all hungry and knew that beds and showers were only a short time away. All my patience ran out quickly at the rally since we were so close to being done and the fact that it was dull did not help this. ADAPT tries politically to please both democrats and republicans and they had representatives from both parties speak. After being in the thick of the march and seeing ADAPT as a radical group it was hard to adjust to the compromised political rhetoric of the rally. I believe that they are doing the right thing by not aligning themselves with either party, but as a rally after such a sincere two weeks, it seemed rather depressing. ADAPT's technique works though and since battling institutions they have transferred $20,000 to in home care and have freed thousands of individuals. It is indeed hard to argue with that.

XIII. Saying Goodbye To Impairment and Hello Again To Disability:

My sister and Jeff walked with me from the rally. We left early, which at the time I felt slightly guilty about. It was amazing walking away from there, because after a block or two there was no sign of the march and I was once again in a standing person's world. The next few hours were a complete blur and I was overcome by an intense heaviness in my chest. That night we went back to the hotel they were all staying at for the closing party (I had booked a different hotel farther away). When I arrived I suddenly realized it was over though. There was nothing I needed to do and besides Bethany, no one I needed to say good-bye to. I realized that I had indeed grown to love ADAPT , but not really ADAPTers. It is a funny relationship that is formed in such situations of prolonged dependence. I said goodbye and my sister and I left them to their intense partying.

I had happened to book a very fancy hotel accidentally on priceline.com, which was located in a very clean and stylish neighborhood. I was in complete culture shock. I suddenly became disabled again when people would stare at my impairments and I realized I was back in reality where my neck was always straining to look up and people and where people were always straining not to look at me.

Astra and Jeff left the next day and I sat alone in my hotel room with bags of groceries on my floor filled with foods I had missed on the march. I showered for the first time in days and slept until evening. Oddly enough a hurricane was scheduled for that day and I watched through the window at the intense winds, being very grateful that it had not arrived a day earlier.

Christopher, my friend who had marched with me for the first few days, arrived that night. He laughed at my farmer's tan and sunburn and had me describe in great detail the events of the last two weeks. He and I sat in that room for two days only leaving to find coffee and pastries. I believe I was just enjoying the indoors and the high life of living not on the highway during these days, but I was also hiding from a world which wasn't accessible and which I'd have to adjust too again.

Of course we had to leave eventually and we sadly said goodbye to the hotel that was much too nice for us. Surprisingly I felt good and ready to be disabled again. My initial shock was fading. Oddly enough when I finally no longer expected to see people in chairs zoom past me, we happened to bump into Bob Kafka, one of ADAPT's leaders. He had been stuck in D.C. due to the hurricane and was just enjoying a day as a tourist. I was thrilled to see him and we said thanks to each other and wished each other well. Running into him was a little reminder that it had happened and that everyone was adjusting to reality as I was. Afterwards Chris said that everyone on the street were staring at Bob and I smiling, as if they were happy the only two disabled people had found each other. If they only knew.

XIV. Sources:

• » The Nation 8/19/2002 "Handicapping the Crippled" by Leonard Kreigal
• » "Disability Business: Rehabilitation in America" Gary L. Albrecht ((Sage Publications 1992)
• » "Beyond Ramps" Marta Russel (Common Courage Press 1998)
• » ADAPT. MICASSA information. www.adapt.org
• » "From Goodwill to Civil Rights" Richard K. Scotch (Temple University Press)
• » Trudy Lieberman of Consumer Reports, Aug I995
• » "The Politics of Disablement" Michael Oliver
• » Interview with Bob Kafka

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