Tuesday, July 26, 2011

Don't Judge People- a very long story to a short and simple point-

Today is Blog for Access Day. And since I live with- and spent many years as- a disabled person, I figured I'm a pretty good person to talk about it.

When Jerry- my husband, the disabled guy- became disabled, it was sudden and it was shocking. He literally fell down when he had the stroke. He was unloading the back of his truck (he was a long-haul trucker) with another guy and he was carrying a box. He staggered, dropped the box and the guy he was with- who I am forever thankful was there- asked if he was okay, then caught him as he fell. From that "fall", all he ended up with was a scraped knee. He could have broken a bone, his hip or his arm. Even cracked his head on the metal floor. Or, he could have had that stroke while he was asleep in the sleeper part of the truck cab. But he didn't. He was with that huge, muscle-bound guy wearing a weight belt.

Our early days were spent dealing with many complicated things. Medical things, physical therapy. Big words, long explanations and lots of questions. The smallest thing that concerned me was the easiest thing to get- a handicapped parking permit. With that blue placard on my review mirror, I could park almost anywhere. If the handicapped spaces were full at the physical therapy clinic, I could park in the no-parking zone, unload him, walk him inside, and go park the vehicle. But, I could leave it there, in that no-parking zone, without worry. Nobody would ticket someone who was dropping of a handicapped person.

As he was only twenty-eight years old, his placard was marked as "temporary". In six months' time, we could get it renewed and it would be more permanent (I think a year at the time). But, when that six months was over, he threw it away. "I don't need it." he said. He can walk. He can walk for miles if he has to and he has. He refuses to accept handicapped parking because, even though he's disabled, he says he doesn't need it. And he really doesn't.

In my mid-to-late-thirties, I became disabled. It happened slowly. What we didn't know at the time was that I was showing signs for what would eventually be diagnosed as Fibromyalgia. Honestly, I thought fibro was a made-up disease. Just one of those things they label a person with to shut them up. About a year after I started my slow decline, I injured my knee- again. The first time I injured my right knee, I was eighteen years old (I was eighteen all of a few weeks' time). I was running in a snowball fight (we lived in Alaska) and I blew out my knee like a football quarterback. So, this final knee injury- it was my eighth or ninth in twenty years.

I ended up on crutches, of course. Then a cane. And after a year or so my left knee started to hurt and I ended up having to use two canes. I had to use two canes for over a year. I looked like some kind of demented cyborg with two matched canes. One of my son's martial arts masters thought I was brilliant. I actually thought he was being facetious when he exclaimed his surprise at my two canes. But he went on to say how much coordination it takes to walk as quickly as I did, using two canes for support as I obviously was doing. I have to admit, when he said it would be the perfect "disguise" for a martial artist, I was kind of proud. Nobody would suspect the gimpy housewife.

Did I get a handicapped placard?

I did not.

My problem caused me great pain. Walking hurt and walking a lot hurt a lot. I had to plan my days by how much walking I was going to do and how much Vicodin I'd need to get through it, versus the amount of time I had to drive. My doctor kept telling me I didn't need a placard. Except that I did need one. My left knee, from its twenty or so years of compensating for the right knee had gone to bone-on-bone. That doctor strung me along for almost three years- even telling me there was nothing wrong with me that "losing weight and a little exercise" couldn't help. Except that everything started to go bad before I put on the weight. He was a jackass.

Jerry wouldn't request one for himself so I could use it either. I tried to get him to see how it wouldn't matter for him, but it would help me in a huge way. But, he didn't want one and he wasn't going to get one.

The high school where my kids attended over the course of eight whole years (three kids) was handicapped compliant with ramps and such, but to a person walking with two canes, ramps are not easy to maneuver. And during the course of that eight years, they changed the point of entry for parent/teacher conferences- sometimes multiple times a year. And with me being in that "plan my outing to match the amount of walking/pain" stage of my life, I would try to park near where the entry was or at least, midway between entry and exit. I would end up walking too far just to get into the building. And the staff would treat me like I was insane when I asked why they changed the entry point. "OH, we've always been at this door." No, you haven't. And I know you haven't. And despite all that pain, I never missed a single parent/teacher conference. Not even when I got out of the hospital on a Tuesday at noon and conferences were on Thursday at 4:00 PM. That was the ONE time I didn't use the proper entry point. Because I was in a wheelchair and unassisted (that was following my manipulation under anesthesia five weeks after my knee replacement surgery).

I did get a temporary, 90-day placard. That was when I had my knee replaced.

What I did get a lot, during those three years that I was getting sicker and sicker and in more and more pain was people telling me I was too young to be disabled. I was too young to be in this much pain. (I was thirty-nine when I had the knee replacement and I was forty when I was diagnosed with fibro). I was even told I was making it up or just outright lying.

Turns out, I wasn't. I knew I wasn't. My friends knew I wasn't. I'd say my family knew, but I got the whole, "We KNOW you don't feel good, you TELL us all the time" bit one too many times from them.

So, when you see someone who looks young and not visibly disabled with a placard or even just using a cane, you might want to rethink your attitude. There is no such thing as "too young for a stroke". There is no such thing as "too young" for a disability.

And we are not "lucky" when we get all those great parking spaces.


  1. Damn right.
    (As an aside, I had my first mini-stroke when I was 13. I still have (luckily not too serious) issues from it now, and I'm now 30.)