Staying On Task

I have other issues besides BIID. (There. I admitted that I have BIID. More on that some other time.) I've been dealing with them as long as my manageable BIID.

The depression I have isn't very manageable.

My experience with psychiatrists, overall, has not been a good one. More often than not, he tries to impose his will on me without asking me what it is I need and where I want to get to with the assistance of medication he prescribes.

This week was my latest dance with psychiatry. I knew I would have to address BIID and likely would have to explain it, but I also knew I would have to get past it.

I had to address BIID because my referral to this particular psychiatrist came by way of a BIID researcher, although it was a colleague-of-a-colleague deal. This new doctor asked how I came to be referred to him. I explained and said, "But I'm here to deal with depression, not BIID. That's under control."

We talked about BIID, which he hadn't heard of before. He was deeply interested in it and said he had heard of body dysmorphic disorder. He wanted to know more.

His fee is outrageously high, but having dealt with bad doctors before, I know good ones can be well worth the price. Still, I wasn't there to educate him. There are web sites. He's a very intelligent man. He can Google like the rest of us and will no doubt come up with the sites I would have recommended.

I think one of the tasks that faces a person with BIID seeking help with mental health issues is moving beyond BIID, and more importantly making sure the doctor sees beyond it too.

Hey, it's a new thing. It's a cool thing. It's kind of a funky thing for doctors to wrap their heads around.

Part of my responsibility as a patient is to know as much I can and truthfully report as much as I can about my condition. I know the difference between BIID-induced blues and the long-lasting depression that has been with me for a very long time. In this meeting, I had to make sure the doctor saw beyond the interesting and new and moved on to the particular problem at hand.

I pushed him not merely once or twice but three times to move on. Again, he's a smart man, so he got it and we moved on.

I don't doubt that one day we'll revisit BIID, but it will likely be on his dime and not mine.

I Cannot and Will Not Hook You Up

If there are male devs who read this, please keep it to yourself. Do not IM me. Do not email me. Do not comment on this blog. Do not pass go and do not collect $200.

I was contacted via IM today by someone who asked me if I'm disabled and then asked me if I could refer him to a chick with a disability.

This was creepy and slightly disgusting. I've now had direct experience with why male devs are regarded with suspicion.

You know, generally I'll talk to anybody about anything. But this guy went right to the heart of the matter and the third IM he sent me asked me about my disability and if I'm a wheeler.

When I've chatted via IM with guys with disabilities, the disability rarely features in the conversation. It's more of 'what kind of person are you, what do you like to do, how's life treating you' than 'please tell me the level of your SCI, whether you have sensation or not and what adaptive equipment you use.'

Please, there are web sites for that. Go off with your icky friends and play your icky games there.

And what makes you think my gurlfrens need or want to talk to the likes of you?

Perv.

Lies Employers Tell

I worked for a Fortune 500 company for about a year, in their Human Resources / Human Capital (I hate that expression) / Personnel office. I was doing IT work and didn't do any hiring except for the person to replace me when the time came for me to move on.

It was stunning to see how a pervasive discriminatory mindset worked in what should have been an open-minded and totally law-abiding setting.

Applicants with "obviously black" names (Tanisha and Shaquan are two I remember) were not considered for employment. If your name was Justin, Kate, Josh, Heather or something along those lines, you were considered for employment.

When the company moved into its huge new headquarters, the design was bad. Very, very bad. One woman in HR had multiple sclerosis. She used one forearm crutch and easily got around the older, smaller building. In the new building, she was unreasonably far away from accessible parking and, more importantly, a bathroom. The cafeteria was a hike even for AB me. She voiced her dismay to management.

The company response was to get her a scooter to use at work.

Although she knew it was pointless and didn't resist, her dismay deepened and she grudgingly used the scooter. I'm guessing she disliked being forced "down" to a scooter and in reality although it gave her distance, it did not give her greater maneuverability. Too bad.

I left that company and went to a much smaller company. My manager frequently handed me job reqs to review for the department. Three times, I pointed out to him that the job req's specification for being able to lift 25 pounds was not accurate and might be construed as blocking the way for someone with a disability. I have never in my IT career been forced to lift anything weighing more than five pounds. My manager was surprised and offended. "But we would make an accommodation," he said. And I knew that was a lie.

Last week, I had an interview at a very, very big company. I had been using crutches while my leg was on the mend and on that day, my leg still hurt. It didn't matter. I set them aside for the duration of the interview.

I wasn't prepared for the amount of walking I had to do. Up stairs. Down stairs. In my lady's office. By the time it was over, I was limping noticeably. When I got home, I settled on the couch with a pile of pillows under my leg. I stayed on the couch for the next two days and when I moved around, it was with the aid of crutches.

Imagine my non-surprise when I did not get the job.

The Un-Social Contract

For about the past week, I've been mostly on crutches. In a dazzling display of balletic grace, I fell up the stairs to my house.

I have gone through the usual everyone wants to help business and honestly, have been grateful to have doors held open for me. But today I realized that if the doors slid open automatically, this would have been a non-starter. Most of the doors I went through were doors to public buildings. It was easier to get into the door of a house than the door to my library.

What I have not been so crazy about is people presuming they can touch me - people I've never met before in my life, non-medical people. I'm sure it's well-meant, but it can literally throw me off balance. Reaching around me, reaching in front of me, reaching for my crutches, reaching for me, these are movements that can startle me. I'm not steady on my pins to begin with.

There seems to be a general understanding that the public could and should help someone who is obviously temporarily disabled. The kind of crutches I've been on are the apres-ski break kind, the underarm crutches now in a light and easily maneuvered aluminum.

It was very, very, very weird when I initially showed up at the urgent care facility after my failed gazelle-like spring up the stairs.

I couldn't walk at all on my own, but someone had passed along a pair of forearm crutches to me long ago, saying, "You'll never know when you might need them." Although they didn't do the trick, they got me from the car into the building, which I wouldn't have been able to do unaided.

I gimped my way into the check-in and the freak-out immediately began. I was offered a wheelchair and gratefully took it. When the nurse came in to take my bp and temperature, she looked at me from the corner of her eyes. "What's your underlying condition," she half-whispered to me.

Clumsiness? Hastiness? A pair of really vicious fake Croc shoes?

"A hurt leg," I said.

"Oh. It was hurt before?"

"No, I hurt it an hour ago."

"Not MS?" (The staff at this particular facility has been trying to assign MS to me for the past two years. I have never been diagnosed with MS and I don't have any symptoms of it.)

"No."

"Then why do you have those crutches?"

"To get me from the car to this building."

The nurse went away. The doctor came in, looked at me, declared that I needed a CT scan, that the operator had left half an hour ago, and I would have to go to the hospital. The doctor left and no one came back in. No one. No one came to give me anything for pain, to help me get dressed, they just left me there.

I dressed myself, took the new pair of aluminum crutches offered me, got into my car and drove myself to a completely different hospital's ER. I used the aluminum crutches to go in and there was given pain medication and was talked to like a human being.

It made me wonder how someone with a pre-existing disability is treated when he goes into an ER with a completely unrelated problem. I hope you aren't shunted off to the side like I was. But it wouldn't surprise me if you were.

I'm gradually getting better but not as quickly as I would like.

I have an interview for a contract gig tomorrow and do not want to walk in on crutches. Neither kind.

Got Milk?

Last night, I watched "Milk."

The disability rights movement needs a Harvey Milk. If a martyr for the cause, how much the better?

What Milk had going for him was a constituency. From the time he was able to list businesses that were gay-friendly in the Castro until his assassination, he had a physically centered constituency that he could rally, excite, and motivate.

I knew a guy who said he always avoided being with other wheelers or people with a disability. "It looks too much like the bus from the group home just got in," he said. I think that's a fundamental error in thinking. Lucky for him, his parents were wealthy and handed him a business that grosses millions every year. He insulates himself with money.

Try these on for size:

"I don't hang around with other gays. It looks like Christopher Street on Halloween night."

"I don't hang around with other African-Americans."

"I don't hang around with other overweight middle-aged white chicks. It looks like the Red Hat Society just invaded."

Come. On.

How on earth can you create a movement when there's no solidarity? When you don't want to belong to the group you belong to? Despite what Disney and after-school specials try to tell you, the individual matters pretty much squat. If you get a thousand, twenty thousand, a million people to come together, that's a force greater than one. That's a force that can gather and display its power in how it votes, businesses that are frequented, products that are bought.

At this point, you're only disenfranchised if you want to be.

Are people afraid of the angry, bitter cripple stereotype? What's the price of speaking up? Is it really that hard to get angry, disenfranchised people to speak up?

I admit I am not hooked in to the disability rights movement. If there's a Harvey Milk out there, I'm unaware of it and would love to hear that there is.

Please. Prove me wrong.

The Anti Zone

Someone asked me about my Sunday wheeling experiences.

Did people stare at me?

I have no idea. I wasn't looking at people, I was looking at the paintings.

Did people treat me like I was invisible?

No. I think people were acutely aware of me. On a beautiful and crowded spring Sunday, the museum was packed by noon, but I experienced no problems with crowding. When I backed up, I always checked that no one was behind me and no one ever was. Thinking about it, I realized that was odd. Instead, I realized that there seemed to be no one around me at all.

In fact, I seemed to have created an inviolable space around me. I have to admit, given my intense dislike of crowds, I liked that.

When you were a kid, you probably had a toy of iron filings encased in plastic and you moved a magnet around to draw the filings near the magnet. I was the opposite of that. I created an anti-magnetic zone.

I already know what it's like to feel invisible. I've known that feeling for at least the past twenty years and have felt it especially in the past ten years. Being deliberately avoided somehow makes me visible. You have to see me to avoid me.

I know that to some among the wheeler community, invisibility and avoidance are sources of grief, but I say bring it.

And the big deal about all this is...?

Last night, I set my alarm clock for early this morning and when it rang, hauled myself out of bed.

I had a nice-ish outfit waiting, black trousers, black shoes, a black sweater, conservative earrings. Dressed myself, put on some makeup, stuffed my windbreaker with the stuff I would normally carry in my purse and had a momentary panic when I couldn't find my car keys. I found a spare and will look later for the first set.

In the car, I put both forearm crutches and by the time I parked near the train station, had already decided I would go with one crutch. Surprisingly, it did help with my feet.

Previous experience has taught me that a physical signal like this can be valuable. I had surgery about ten years ago and although my feet were not involved in the surgery, I used a cane when I was outside. This showed people that they would need to go around me if they wanted to go faster because I was already going as fast as I could.

I took my time getting my ticket and a cup of coffee at the station and took a seat on a bench. By the way, I have already noted how very inaccessible this place is for a wheeler. It might be okay if you have a wheelie placard, but it will involve a ride in a stinky-piss elevator. I took the escalator to the platform and sat on the bench closest to the door.

Took the train into the city and walked across the street to the bus. There was a wheeler woman there and her friend waiting to get on the bus. The driver lowered the ramp, WW went up and I gratefully followed.

During the trip to the museum, the driver kept double checking where WW and Friend were going - in Spanish. "Si, si," they kept saying in Spanish. "We're going to this museum."

"And me too," I added in Spanish. WW and Friend laughed. When we were left out, the bus driver kept telling us to go to the east, but I knew we needed to go west and he had dropped us two blocks north of the ground floor entrance.

I borrowed a wheelchair, put my crutch in coat check, and with WW & Friend, took the elevator to the Impressionist paintings.

I'm sure I'll get a better report from my body tomorrow, but right now, I am very, very, very grateful that I used the wheelchair. My feet don't hurt. At all. My shoulders are a little sore, but if I hadn't had to walk twenty blocks south, they wouldn't. (The bus route was closed due to a parade.)

This is it, overall: I was not turned on. I was not all jazzed. I was relieved. Relieved, do you hear me? Relieved. It was so good not to have to worry about my feet giving out on me. I had a very small, specific agenda. I wanted to see the Impressionist paintings at the museum and I did. Painlessly.

I got to spend a lot of time with the paintings I wanted to see. I read the informative little plaques next to the paintings. I got to study the brush strokes in a Van Gogh iris. I saw the mosaic-like tiny rectangles of color in Paul Signac's "View of the Port of Versailles".

Later in the museum cafe, I had lunch with a glass of wine - just one - that had me dangerously close to an "I love you, man" moment while watching the skaters and bikers zoom through Central Park.

When I knew I was saturated with beauty for one day (likely a year or two, unfortunately), I returned to the cloak room, reclaimed my crutch, returned the wheelchair and went on my way.

I don't know what the big deal was about all this in my mind. Using a wheelchair proved to be a wonderfully useful thing that saved me a great deal of discomfort and allowed me to enjoy my museum experience far more than I would have otherwise.