Mixed States

I realize how long it's been since I posted here. Not much has changed.

A lot of things have happened.

I'm going out in my chair more but it still isn't a lot. More on that later, maybe. Today's particular kvetch is a spillover from my mainstream blog. A friend of mine has invited me to lunch at a very nice place with very nice gardens. It's a two hour drive away. She's going to drive. In her convertible. In her teeny tiny Mercedes convertible. I was just diagnosed with my second round of skin cancer - very minor, but still, surgery is scheduled and I'm not looking forward to it.

There is nothing at all about the convertible experience that I cherish. The wind, the sun, the hair all over the place thing, the wind, and the sun. Not to mention the fact that my friend comes in size XS and I am XXL and she naturally chose the car to fit her and not any of her passengers. I am sure that all will be well once we reach our destination, have our meal and wander the gardens and then again when I return home.

Tina is one of the few people in my real-life world that I've told about BIID. She showed enormous intellectual curiosity about it when I first mentioned it to her and I've told her to feel free to ask any questions. One of life's many ironies is that Tina owns a wheelchair van. She is perfectly able-bodied but her late husband was paraplegic due to illness in the last years of his life.

She has a hard time getting rid of things. The few times I've seen it in her driveway, I've cast longing glances at it. I've considered asking her if I could buy it, but I honestly don't have the cash and again, she has a hard time letting go.

This is not the weekend that I had in mind for myself. I have my chair in my car and I knew where I wanted to go. I may or may not have to opportunity to go out on Sunday. There is someplace deep where this all comes from, the unsettled feeling I have. Perhaps that's what it feels like when things begin.

Public Property

Until the last couple of months, I've been left alone when I go out. Steep ramp? Just give me time, I'll get my ass up it. Something too high on a shelf? I'll work it out. Those leap-up-it's-a-miracle-moments shouldn't happen and they don't.

However.

I've been going out more lately because I have better casters and caster wheels on my chair. And also because I've lost a little weight, enough to make a difference. What I'm finding is that I am now public property and I don't like it.

During the past month, I've been down to Atlantic City a couple of times. I don't gamble, but there's just something about AC (as we Jerseyans call it) that I like. For one thing, if you go during the week, four-star rooms are about a hundred bucks. For another, there's frequently wonderful restaurants and some good shows around, too.

I zipped down the Parkway recently and made a pit stop at one of the Parkway service stop areas. Got my chair out, ran down the guy who was eating ice cream in the ramp from the parking lot and looked at the two steps that separated the sidewalk from the rest stop.

There was a ramp. A crumbling and unhappy looking ramp. For a weakling like me, I knew it was going to be a challenge and it was until, lo, a great miracle occurred and I flew up the ramp. I turned and there was some man I'd never seen before in my life pushing me up the ramp. Into the rest area building.

I thanked him. It was only polite. But I grit my teeth at the same time.

What I noticed on this trip was that I was not invisible. People saw me. In a way, how could they not? Not only was I visible, but I was the village idiot and public property. People felt like they had to take care of me.

And I have to admit, for some reason during this trip I was not the sharpest crayon in the box and don't know why.

I'd been to the concert venue before and knew the ramp up into the hall area was steep and carpeted. I asked one of the ushers for some assistance and again, I got the Wheels On Fire treatment.

This particular artist is known for never having a set list and plays whatever requests are left on the part of the stage closest to him. I knew if I went down there I wouldn't get back. (Yes, I am getting the hint that I'm not as, ahem, fit as I should be.) I asked an usher to take it down for me and she refused. I tucked the song request back in my bag.

On the way out, a couple of people who had been sitting in front of me asked if they could push me down the ramp. I said no, that gravity was going its job admirably.

The rest of the time away from home was not without a few complications. I went to a museum for a special exhibit and the parking manager nearly knocked me out of my chair and I had to finally ask him to stop helping me.

It's hard to ask for help. It's not so hard to ask people to stop, because usually you're being treated like public property.

Disability as Combat

I've never liked the metaphor of disability as a battle. It sounds as if disability is a war with tools that can make the disability go away.

In the same vein, I wince every time I see an obituary with "after a long battle with cancer" or some other disease. Sometimes with illness, it can be cured or at least put into remission.

If you're talking about a choice to go on with your life and cope versus staying in bed and turning your face to the wall, the big news is that this is a choice every person has.

Why make disability into a personal war? Are there hills to take? Bridges to destroy? This immediately places the person into a role where he or she is forced to be a combatant or a coward, instead of a person who makes their own decisions about the direction of their life. The person with a disability is expected to put forth extraordinary effort to no longer be who they are. It's one thing to have surgery to deal with painful spasticity and another to have chancy surgery to gain just another degree of mobility. It's for the individual to choose and no judgment should be made if the decision is no.

As hard as it was for me to take, I respected my mother's decision to have chemotherapy when she was diagnosed with Stage IV lung cancer. Already in precarious health, it was extremely doubtful that chemo would extend her life and would certainly degrade the quality of her life. I wished that she had done more in previous years to reach out to life - to find out how she could best become more mobile, how she could improve her health. Still, it was her choice. It was hard for me to accept it, but I did.

If there comes a point in the life of a person with a disability that he decides enough is enough, enough with the surgery, enough with this or that or whatever painful treatment with a minimum of return, then that's enough. Respect that.

It doesn't mean that he's a coward. It only means that he's comfortable in his own skin and makes his own decisions.

It's not a war. It's not a battle. It's living life day by day, every day.

Mail Order Takes an Interesting Turn

The other day in the mail, I got a packet from Paralyzed Veterans of America.

They asked me to send me money.

Do I get my own paralyzed vet? Please?

Life Sentence for Speeding

An acquaintance has recently blogged that the 22 year old Thomas Wopat-Something has received his just desserts if his spinal cord injury turns out to be permanent.

I am stunned at the maliciousness of this. This is a person whom I respect. I know everyone has an off day, but when I questioned her on this, she redoubled her statement. People on the Taconic speed all the time. Locals have been killed by non-locals who were speeding on what is a local road and not an interstate and certainly not a speedway. Those are tragedies and there's no doubt about that.

If Wopat-Something's spinal injuries are severe enough to cause complete or partial paraplegia, that's a harsh sentence for speeding. Yes, we know paraplegia is not the end of the world or the end of a life, although it does cause lives to take unexpectedly different directions most of the time.

For going too fast, Wopat-Something likely faces surgery, painful recovery, and rehab. I'm sure he would have much rather pay the $200 fine for speeding and lose his license if he was, in fact, driving under the influence. If he had been speeding, he should have slowed down.

That's like wishing Stage IV lung cancer on someone who smokes a pack a day. The punishment in no way mirrors the crime - if there was one.

Mostly, I'm surprised at the harshness of this woman's judgment. I know her usually to be just and fair, so this venomous take on this shocked me.

Ironically, this woman's husband was severely disabled before he died.

Could she have forgotten this so easily? Or has her anger marred her judgment?

I hope she doesn't find out that I went 80 mph on the Turnpike last Thursday.

Hanging wif my Peeps

I just back from "Abilities" expo. These seem to be good to go to every three or four years. The pace of innovation isn't exactly breath-taking.

I have to come down off this high I'm on because all I can burble right now what how cool it was. How people looked me square in the eye and shook my hand. I was taken at face value - except for one guy who was in a chair, in KAFOs, who asked me within two minutes "what happened". And I replied - truthfully, as it turns out - lesions at t-12 and l-5. He said he was a polio. 'Scuse me if I'm skeptical.

Don't get me wrong. I am grateful for the chair I have now....but...but... as I was cruising down an aisle, a Quickie rep came up to me and said, "Aren't you kind of worried about that left wheel?" Yes, as a matter of fact, I was. It had a wonky feel to it, and as I was wheeling along, I kept it slow. I asked if anyone was repairing chairs and he pointed directly over my head at a sign in the next aisle for free wheelchair repairs.

Free! Free wheelchair repairs, although I imagine you would have to pay for the parts. I rolled over there and within five minutes, all was set in order. There were nuts loose. (Stop. Don't say a word.)

I went over to a major, major, major w/c manufacturer. They let me take two different chairs out for a test drive. One was good, but the second was the one I fell in love with. It fit me perfectly.

There was a demonstration of wheelchair/AB dancing on the other side of the convention center, so I zipped over there to watch. A female dancer was teamed with an extremely buff para. Be still, my heart. At first, I wasn't impressed but when it was just the two of them, things got muy caliente.

I saw a big open space away from the dancing and I went over there to dance. It was so freeing. The chair was a dream. What a wonderful thing! I take back every snotty thing I've ever said about wheelchair dancing.

I zipped all around the convention center - still in the test drive chair. In ten minutes, I saw what would have taken me hours in my own wheels. I went back to the sales guy - who turned out to be the international production manager. I asked how much the chair was and he told me a figure that would fund a two week deluxe trip to Europe. I gulped. And then I said, "I know you guys get asked this all the time, but do you ever sell demo chairs?" The sales guy pointed to a guy in another chair. "Ask him. He's the head honcho. He's the president of the company."

The Prez wheeled over and Sales Dude introduced us. We shook hands. Sales Dude put the question to him and then walked away. The Prez, who looked to be about my age, pondered the question. He went through a legal disclaimer about only selling through dealers, etc., etc., etc.

I have learned that the most amazing things happen if you just stand there. By just standing there at a mattress store, the price miraculously descended several hundreds of dollars. I just stood there.

"Insurance," he asked.

I shook my head.

He sighed. "E-mail me when I get back into the shop next week. Remind me about our conversation. Sales dude! Get the measurements on that chair she liked! Sometimes we have things that have just...amortized out. Maybe $500?"

I nearly wept. These gorgeous chairs. These swift and beautiful chairs!

Then he whispered, "But you can't, for God's sake, tell anyone we did this. The distributors would kill us."

I zipped my lip, locked it and threw away the key.

Everyone who saw my current chair looked at it and then back at me, in the spiffiness. They shook their heads pityingly.

With great regret, I got back into it. But make no mistake - I am grateful to have this one.

And I'll just wait for the spiffiness.

When You Hire A Negro

Welcome to the XYZ Corporation handbook on interviewing and hiring a Negro.

As we all know, laws have been passed to make companies a more hospitable environment to Negroes. It is important that we learn to feel comfortable around people who are Negroes.

Interviewing a Negro
First, make sure the Negro understands where and when the interview is to be held.
When interviewing the Negro, do not judge the person by how dark or light his skin is. Sometimes, it might even be hard to believe a person is a Negro!
Do not make a point of mentioning the person's skin tone.
Do not judge a Negro's ability to do the job based on the person's Negro-ness.

Hiring a Negro
It is up to the Negro to identify himself as a Negro. Again, sometimes you can't tell that they might need extra help (also known as "accommodation") to perform the job they were hired to do.
Ideally, the person would identify himself as a Negro before beginning work in case accommodation is needed.
Before the Negro's first day, gather your staff to explain that the new team member you have hired is a Negro. Explain a little about the exact kind of Negro-ness the new hire has.
Don't stare at the Negro. It is perceived as an insulting and threatening gesture.
Make sure the Negro feels included in team meetings and activities.
You will find that Negroes are loyal and tend to stay longer at companies more than non-Negro employees. They are tremendous assets in this sense.

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Honestly, this is what I read online today at the company where I'm consulting these days. Oh - except "Negro" was spelled "person with a disability".