Wheelchair Chronicles: Clearing the Air

I ended the first article with the saying "The devil is in the details" and as time goes on that saying is becoming more and more appropriate. I have learned so many new things about being in a wheelchair and being visibility disabled. I've been disabled for years, but it was an invisible disability. No one knew unless they were around me enough to notice. That is if they cared enough to be observant.

In the past I have had to hear things like "You're sick again?" and I've had to restrain myself from asking "When exactly was I well? How did I miss that moment in time?" Most of the time I managed not to say, "Not sick again, sick STILL!" It was frustrating, but now I'm at a new level of frustrating comments and actions; make that reactions from clueless, but well meaning people. So I thought I would write out a few of my observations today and maybe it will help others. Maybe in won't. Either way, I get a few things off my chest.

There is no easy way to explain that I'm now in a wheelchair. I've told everyone who is close to me what they need to know. None of those conversations were easy. Lots of tears were involved. For everyone else I am telling them that I have been disabled for years and this is the next step in the process. They do not need to know anymore than that. If someone is insensitive enough to ask for detail personal medical information that is none of their business, they are in danger of getting their head snapped off. I do give gentle hints that it is none of their business before I go into attack mode. I ask you, would you feel comfortable telling your personal medical details to just anyone?

I want to point out that wheelchairs do not come with brakes. At least not mine, nor any of the wheelchairs I have examined. I'm talking about the kind of brakes that will stop the wheelchair immediately while it is in motion. Yes, some have locking devices to hold the chair in place, but that's not what I'm writing about. If you step out in front of someone trucking along in a wheelchair, you put yourself in danger of being run over. If a small child steps in front of me, I will do what it takes not to run over them, even if it means I have to tilt over and hurt myself to do it. If an adult steps in front of me, they are on their own. I will do my best to stop, but if I can't, too bad. Between my weight and the weight of the wheelchair we are talking about 400 plus pounds running over your toes. Also my chair can go up to five miles an hour. Between the speed and the weight, your carelessness can cause a lot of damage. Tell you what; I'll do my part by paying attention to my surroundings. Please help me out by doing the same.

Too much helpfulness, is worst than no help at all. I've had people run to open doors that I never intended to go through. I have had people start pushing my wheelchair around. That's a big no, no. Ask if I need help before you start helping. Don't touch my wheelchair, it is the same if someone grabbed your shoulders and started pushing you around. You wouldn't like that, I'm sure. I know I don't. I can get myself in and out of most situations, as long as you get of my way. Basically, if I need help I'll ask for it. I've had to learn to swallow my pride so much, that I am able to ask for help when I truly need it.

When I am sitting at a desk in my wheelchair, please do not stand behind me. Not only are you talking to my back, what you have done is trapped me. If you want to talk to me, get my attention then give me space to turn around. I like looking folks in the eyes when I talk to them.

Oh yes, here is a biggy - don't react to my wheelchair with words like "Oh, no, no, no!" or "Oh my God, what happened?" in a tone that would be better saved for situations like you've just witness a huge tsunami headed our way and it will hit us in seconds. My wheelchair isn't a disaster. It is a huge blessing.

Have I helped you understand my situation better? I know I feel better for explaining these things to you. I hope you know that although I am disabled, I am not a pitiful creature needing constant attention and assistance. When you see me, treat me as you always have. Ignore the wheelchair. It's not who I am, it's just a tool to get me around.