My son got a job in Grand Teton National Park in northwest Wyoming. As of Monday, he is a seasonal worker and will be living in the heart of the park. I must confess I am a little jealous of his youth and his freedom--he has absolutely no ties holding him down. I am also happy for him because he has a lust for travel that is being satisfied. Hence seasonal work in various national parks is ideal for him. After much discussion, we decided the best way to get him and his gear west was to drive. Air travel is too much of a hassle for him given his recent travel history (too many one way flights and moves). We made the 2,200 mile trek from New York once before when he was a boy. It was a great experience and we decided to duplicate that experience a decade later. Most of our time in the car was spent talking about life, literature, anthropology, ethics, assisted suicide, racism and the unrest in Baltimore, etc I cherished this trip because I know that as he gets older we will not be spending as much time together. This makes me sad and happy at the same time. I joke I spawned an adult yet he will forever be my beloved little boy.
What I found fascinating about our trip in terms of disability was our hit and miss experiences at low and mid end motels. Heading west we stayed one night in Illinois and one night in Nebraska. These two nights combined with filling up the gas tank twice a day illustrated the extreme disparity in what is imaginatively called wheelchair access. Curb cuts abound but few conform to ADA codes. Aisles in convenience stores are narrow and most are grossly inaccessible. No junk food for me! Accessible bathrooms are a rarity. Clean accessible bathrooms are even rarer and akin to a diamond. A few times I pointed out the lack of access. The response was a dull look of boredom. An engaged employee would simple say a basic sorry. Inaccessible sandwich shops and road side restaurants were often not accessible. The lack of access was about what I expected and reinforced the fact I am largely restricted to big box restaurants that conform to the ADA. Thus kiss any authentic local food experience goodbye.
My food options were severely restricted as were my options at motels. My motel options were limited to national brands like Days Inn, Holiday Inn Express, etc. I no longer even bother to ask about an accessible room at small town motels. The sad reality is in our expansive nation physical access remains a real challenge--a thought that dominated my mind driving across Nebraska (insert corn joke). There is a vague idea that a law was passed a long time ago and that it solved the problems of all people with a disability. This misconception is reinforced by all the little blue wheelchair logos one observes in parking lots and near entrances to buildings. These signs, deemed by my son as "little blue signs to nowhere", are devoid of meaning. Symbolically they make people without a disability feel better. I for one fail to see the point of these signs when they point to a ramp that is blocked by fire wood or car wash fluid at the local gas station.
The reader without a disability might be thinking, okay I get it, wheelchair use is a major inconvenience but at least the national brand motels are barrier free. Nope. Not true. In Nebraska we stayed at a cheap national brand hotel. It was the least accessible room I have ever been in. I could not reach a window. I could not reach the towel rack. I could not reach the thermostat. I could not reach the shower head. I could not turn my wheelchair in the bathroom. There was so much furniture in the room I could not turn. I could only get to one side of the bed. Essentially I could get in the room and move in a single direction. To turn I would have to back out and turn around outside the room. Once inside I was utterly dependent upon my son. This is not acceptable and I did not complain. This was access circa 1978. We were passing thorough and would be in the room for less than 12 hours. There is no question the people at the desk had no clue what access meant and this gets to the heart of the problem--ignorance. In Illinois on my way home I stayed at a Holiday Inn Express. In general, these motels are nice and accessible. Quite clean, decent linens, comfortable beds, and located within a mile of the interstate. What more could one want. I called ahead and asked if an accessible room with roll in shower was available. After a few minutes I was told yes such a room was available. I asked the clerk to double check with the manager. A few minutes later I was again told yes we have an accessible room with a roll in shower. I show up ten minutes later and suddenly the accessible room with a roll in shower was occupied (that had one room with a roll in shower). There was no sorry just a spooked look that indicted the desk clerk wanted me to disappear. This is my norm. Life is never simple, travel always presents unnecessary barriers both attitudinal and physical. These barriers limit my life. They limit my experience. They set me apart as different. They set me apart as unimportant and for employees in the travel business I represent extra and unwanted work. This is most obvious in the airline industry that has a deep seeded hostility to people with a disability.
I thoroughly enjoyed my time driving across the country. I put 4,500 miles on my car in 10 days. I spent a lot of time with my son who was disconnected from the internet and gaming world. We had fun and yet the looming un articulated presence of disability was always present. Where to stop for gas? Let's wait for the giant truck stop. Where will we stay for the night? Better wait for the exit with a cluster of motels. Where will we eat? Select the least horrible big box food chain or let's not eat and just snack for lunch. I hope at some point in my life I will have a bipedal experience. Not the walking part but the privilege of choice. The privilege of not thinking. The privilege of just wanting to eat or selecting a motel and knowing it will be hassle free. The privilege of parking and not encountering a blocked ramp. The privilege of privacy. The absence of being screamed at or being deemed a remarkable human being because I can drive and get my wheelchair in and out of the car by myself. The privilege of equality. This is what I thought about the most on my drive home. How and when will I be equal. In this regard, the ADA put the law on my side. In theory I am equal. In theory I share the same rights as the bipedal people that stare at me. But I have never truly felt equal. I have never been treated equally. My experiences are in the estimation of others always "special" in some way. Screw special. The only special privilege I desire is equality.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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