Who's on First, and Is He Driving the Big Brown Truck?

My wheelchair and my the lift on my van both needed repairs at the same time.

My wheelchair's regular maintenance needs are covered by my health insurance, for which I am thankful. I took it in for new tires, batteries, and a new seat cushion, and found out that my squeaky left rear wheel needed a new motor. They ordered it, and it was to arrive in about 5 business days.

The lift on my van, which I hate using for a variety of reasons, was barely getting my wheelchair into the van anymore. It also needed a new motor, but such things are not covered by insurance. You can, however -- and this is a big "tip from the crip" -- use the money from a health care spending account to pay for disability-related equipment and repairs on a car or van. (You can also use this money to pay for disability-related access work on your house/apartment, for things such as grab bars, lifts or ramps, widening doorways, etc.)

So, they ordered the motor, and, because I needed everything to be ready to go by 8/12 (a Friday), because I was going on vacation -- a driving vacation. I said that I would pay extra for them to send the lift motor by 2nd day air, because otherwise it might not arrive on time.

On Monday when I called, nothing had come -- but that wasn't surprising. Tuesday, I was too busy, and didn't call. On Wed. when I called, they had "just found out" that the motor for the wheel on the wheelchair was "backordered" and might not come in time, but it might come on Friday. Oh, and they "forgot" to ask for 2nd day air on the lift motor, but it "should" arrive on Friday also.

Friday morning, I get to the wheelchair vendor/mechanic at 10:30 am; UPS has come, but the truck was so full and disorganized that the guy was going to be coming back -- this from the "customer service" guy at the front desk. So, he doesn't know if either of the parts came.

I call my dad and he takes me to breakfast at the nearby public golf course. We get back to the vendor about 1:30. "Tell me something good." I say to Mr. Customer Service. "I don't know."

"Did the UPS guy come back?"

"No."

I sit and stare out the window for a while, and then I say, "I understand [from what he told me earlier] that the UPS delivery guy isn't the one who loads his truck, so he doesn't know where all the boxes are, but he must have a list of everything he has, right? [I believe this is sometimes called a "manifest", but I don't use this word.] "Did anyone ask him to check his list of boxes to see what had come?"

"I don't know."

Just then the phone rings, and Mr. Customer Service answers. He says, "Uh huh. So it won't be shipped until Monday. And who's that for?" Then he hangs up. I have a bad feeling about it, but hey -- I am not the only customer that they've got. There is no reason, other than the hairs sticking up on the back of my neck, for me to assume that this overheard scenario was about something for me.

About a minute later, Mr. Repair Guy comes out and sits down. "Well, dear," he says, which just makes me want to hit him in the head with a baseball bat, 'cause he's lied to me before, and I never know when he's telling me the truth, if ever. "The motor for your wheel on your chair won't be here until next week, but I've done blah blah blah to it and it should be okay for your vacation."

"And what about the motor for the lift?" I ask.

"It came this morning, and Mr. Van Repair Guy just finished installing it."

"It came before I got here this morning?"

"Yes, you're all set."

So -- back at 10:30 am, Mr. Customer Service either lied or didn't know what he was talking about when he told me that they didn't know if my stuff was on the truck. The UPS guy had dropped off the lift motor, and wasn't coming back that day because he didn't have any more deliveries there.

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The insidious thing about wheelchair/durable medical equipment (DME) vendors is that there aren't that many of them -- at least not like car mechanics. I go to these people because they are the devil I know, and I have literally never been able to find a crip to give me a good recommendation for another outfit.

They overcharge like crazy on the stuff that gets paid for by insurance -- but their suppliers overcharge too, for the same reason.

I've been dealing with this place for years. The staff turns over pretty frequently. I always call a lot to check on the status of things because they will often find out something is "backordered" and not call me, or, conversely, finish the work on something and not call either.

In order to get the real story during this latest adventure, I would have had to question 2 0r 3 people before I got the whole story. I am in the business of service provision myself, and am sensitive to not being too pushy a customer -- it didn't really occur to me that the kid at the front desk (Mr. Customer Service) was either making shit up and/or talking out of his ass when I was trying to get the story on the status of things when I arrived. In fact, I thought the idea of me sitting in the small waiting room, which is where his desk is, would have been extra incentive for him to do everything possible to get me out of there as quickly as possible.

It sort of felt like a bad Seinfeld episode. Where's the Soup Nazi when you need him?

Slave to Beauty

So...I hate washing my hair, because I hate getting my hands wet. It makes my skin more sensitive and makes it even harder to grip things. Wear gloves -- don't even go there.

My latest luxury is going to a beauty parlor, just to have my hair washed -- not dried, not styled, just washed. I've been charged as high as $20 -- I was in LA and was desperate -- and as low as $5. $5 makes me so happy that I usually tip another $5.

Except for today. Today, I left the house intending to head over to the strip mall beauty parlor ("spa pedicures"!) where I got a perfectly satisfactory $5 wash last week. En route, I remembered my sister asking me about the beauty parlor that is here in the park. Yeah, I thought, I should check that out -- it would be even more convenient than the strip mall which is the equivalent of 3 blocks away.

I find the park "beauty parlor", which is a 10 x 12 room in a cinder block building that also houses the laundry, restrooms, and a car wash. The owner/operator is a nice, middle aged white woman who won't let me get a word in edgewise.

I mean, I can sympathize with her -- here's freakgirl on wheels at her door. She says, "$5", and I think, "score!"

I sit down at the sink, and launch into my usual, somewhat dumbed-down description of my disability -- "body makes skin too fast, it doesn't break down properly, yada yada". I can tell she's not listening. I say, "there's stuff on my scalp, but I don't want you to try to do anything about that -- I'm just going for clean hair."

She asks me if I use a special shampoo -- I say, "no". I lean back and she starts running the water.

And then I feel a big raw spot open up on my scalp. I think, "how'd that happen?" She hadn't even started soaping my hair, much less scrubbing too hard. I think, "I must have done it myself when I combed my hair?"

Rinsing. Another rip on the other side. Ouch ouch. "Oh, I'm sorry." Her hose's spout has fucking teeth on it! (Probably feels good on so called normal scalps.) "I'm not wanting to get my scalp cleared -- those are raw spots now." All in a perfectly polite, reasonable tone, I swear to god. I knew she was nervous, and perhaps that's why she wouldn't listen to me when I tried to explain how not to hurt me.

Just another day in the neighborhood.

Just Another Day in Paradise (aka Cripville)

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.