I'm like a new American arriving at Ellis Island.
Free but lonely
My friend MaryFrances calls Belchertown "a stop on the crip underground railroad." And for some, fleeing dangerous, abusive and sometimes life-threatening situations, it is. For me, however, Belchertown is more like the shores of Ellis Island must have been to a new immigrant in the 1900s -- the gateway to a strange, fascinating, often terrifying and decidedly lonely place.
I enjoy being able to set my own schedule. The van service here can get me most places I want to go between 7 a.m. and 10 p.m, and I can book a free or cheap (maximum fare $1.50) paratransit ride just by calling the day before. I ride the van to everything from classes to shopping trips, and even a protest or two! If something comes up at the last minute, I can catch the regular, lift-equipped bus that stops five minutes from my house about six times a day.
Back home in Pennsylvania, I wasn't even eligible for the van service because the Americans with Disabilities Act states that in order to be eligible for paratransit services you need to live with three-quarters of a mile of the fixed-route bus service. Since I lived a few hundred yards beyond this limit, my parents had to take me everywhere.
Here, my personal care is mostly provided by fellow activists who seem happy to be doing just, necessary work for $10 an hour (much more than most personal care assistants are paid throughout the country).
This has really allowed me to be more independent. I can bring someone with me when I travel, so I can go more places. I don't need to worry about drinking too much. Since I never go more than four hours between personal assistance shifts, I know I will always be able to go the bathroom when I need to. Should an emergency arise, I go down a list of regular personal assistants and other people who have agreed to help out on those occasions (mostly fellow UMass students, activists, or neighbors). Someone is always around.
In Pennsylvania, personal assistance was provided mostly by my parents. Our schedules were so co-dependent that we might as well have been chained together. They couldn't take vacations or travel, unless my grandmother or aunt could come stay with me -- or I went along. So much for romance!.
I had to go to bed, get up, and go out on their schedule. Someone was always giving up something. It wasn't fair to them or to me. Our relationship still hasn't recovered from the stresses it endured in the eighteen months between my finishing college and my moving here.
I have a wonderful, big apartment -- two bedrooms, a huge living/dining area, and, most important, a bathroom big enough to drive into in my power chair.
I am a pack rat. I have piles anywhere. One pile for classes . . . One pile for my dissertation research . . . One pile for activism . . . My mother complains when she visits. But I don't get rid of them. It's my apartment -- and they are my piles.
Still, I wish I could move my apartment and all of my support systems back to Pennsylvania. I miss my longtime colleagues in the struggle for disability rights. I follow their exploits on the internet. I hold them in my prayers as they march in front of the governor's office. I wait for news to appear in my mailbox. I try to send a little money now and then. I call when I can.
It isn't fair, though, that in order to get appropriate supports I had to move to this place that to me might as well be Mars. Americans are supposed to cherish fairness. What's fair about this?
Still, I'm okay. I'm like a new American arriving at Ellis Island. It wasn't an easy choice, but it was the best one for me.
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