10:45 am Casey calls to cancel the plan for this evening. He says he feels lousy. Ever since Wed. when he called me late in the evening to confirm plans that we'd made a couple of weeks ago, I'd had the feeling he wanted to cancel. He'd planned a bunch of errands for the afternoon, and was talking about making dinner, and then, going to play poker at someone's house. I was invited to go to play poker.
Sat. morning, he says he feels lousy. "My legs don't work." Casey has MS. After many years of not progressing, Casey is finding it harder and harder to walk. He has started using a cane. But, he should probably be using a power wheelchair or a scooter -- not probably, he should be, at least when he's not at home.
He's started an experimental chemo treatment for his MS symptoms. It made him really, really sick -- but he said he felt some improvement afterwards.
It is painfully ironic that I know Casey through our shared careers in disability rights advocacy. I have been disabled all my life, and have just decided to try and pursue my idea of creating a new profession: disability strategist. A disability strategist would help people with disabilities cope with both the emotional and practical aspects of having a disability.
But, I can't get Casey -- who knows better, on some level -- to see that using mobility aids may well be better than destroying his health (which is good, apart from the MS).
4:30 pm Casey calls to say that the poker game has been moved to his house, and is on for 8pm. I say I will come.
4:50 I leave the house to get on the light rail, which runs right by the mobile home park where I live. I am in my power wheelchair. I park my chair in the driveway because I don't have a lift on my house. I priced building a ramp about 6 months ago -- $5,500 minimum. Sunnyvale, the city in which I live, provides free lifts or ramps to residents who meet their income guidelines. I make too much money to get any assistance from the city -- it is an all or nothing proposition, unfortunately.
I hate using my van, which has a cheap (which is to say $2,500) lift for my wheelchair. The lift can barely lift my chair, and my chair barely fits in the available space. Since moving to my mobile home, I use the light rail and commuter train 85% of the time, mostly to avoid using my van.
I had to take my wheelchair in to have maintence done on it earlier in the week, and then I went to work, and left my van there. So, in order to get to Casey's, who lives in San Francisco, I need to get my van from work.
The light rail gets me to my train station connection in plenty of time for the 5:19 pm train. I wait in the appointed place for wheelchair passengers, which is a big white wheelchair "handicapped" symbol, painted in a big blue square on the pavement. There is a space like this at every CalTrain Station.
The train comes into the station. It is one of the newer "bullet" trains. On these new trains, instead of the hydrolic lifts on the older trains, they've built cement ramps that you use to get up on a raised platform. Then, the conductor gets a folding aluminum ramp to cross the gap between the platform and the train car. (The first time I saw this, I laughed out loud.) So, I go up on the raised platform and wait for the conductor to come. But, he doesn't come.
I know the engineer must have seen me, because I was waiting in the assigned place. I look down the platform and see a conductor hanging out of one of the open doors -- I think, if I can see him, then he can see me. I also think that they have seen me because the door is lined up in the needed position for me to board (once they get the ramp).
A couple of passengers look at me inquiringly and say, "is somebody coming to help you?" I say, "they better be", jokingly. I hear the recorded warning, "the doors are about to close" -- I wave my arms in the direction of the engineer, I wave my arms in the direction of the conductor I saw. The train starts moving -- and pulls out of the station, leaving me on the platform.
I am livid. I have been wrangling with CalTrain for over a year over their policy about only 2 wheelchairs per train allowed. That's 2 wheelchairs per the entire multi-car train. They tell their conductors that it is "federal law" that they can only take 2 wheelchairs. In fact, the law says that they must have room for a minimum of 2 wheelchairs. There are a variety of party lines I've heard from various CalTrain officials -- what it really comes down to is that they don't want to delay the trains by having the loading & unloading periods extended if they allowed more wheelchairs. (The only reason there is a downtime is that they have not upgraded the trains or the stations so that a wheelchair user can just get on or off the train by themselves, which is how it is on the light rail. On the light rail, I get on and off the train as quickly as any other passenger -- sometimes more quickly -- and each car has space for 2 wheelchairs.)
I called and insisted on speaking to a supervisor and insisted that they take a report.
I eventually get to Palo Alto, and then on campus. I go inside my building to use the rest room, and there I experience yet another frustration.
My building is only 3 years old, and I actually had the opportunity to participate in the design of our floor, which we made as wheelchair accessible as possible. This includes wide doorways and hallways, power doors, multi-level countertops in the kitchen, etc. I want to stop in the kitchen to get soda before I load my wheelchair into my van, and find that my boss has locked the door, again.
A few months ago, she arbitrarily started locking the door to the kitchen because people were leaving their dirty dishes in the sink. Even after I pointed out to her that locking this door seriously decreased my access to the kitchen -- if you are driving a power chair with one hand and carrying anything else in the other, getting a key out to unlock the door is a major pain in the ass. Even though my boss is supposed to be on vacation, she must have stopped by and locked the door on her way out.
I unlock the door, and leave it unlocked, and get my soda, grinding my teeth to powder.
At my van, I go through the process of getting my wheelchair in the van. This involves getting out of the chair (I can walk -- my disability, ichthyosis, causes severe blistering on my feet if I walk), taking the arms off, folding the back down, and hooking up the wheelchair to the lift. The lift lifts up the wheelchair crane-style. I have to jockey the wheelchair in because the space is only barely big enough, and the straps slowly slip down while in motion. It is a hideous, frustrating process and it makes me want to hurt somebody.
7:30 pm I get on the road to drive to Casey's house, where I lose $30 at poker. I had a good time, but seeing Casey, and seeing how he is not dealing with his disability, made me get a knot in my stomach.
Just in case anyone is wondering, if I had the money, I would:
1) buy a ramp van;
2) put a ramp on my house.