Saturday, October 13, 2012

5 things

I was asked recently, at a conference, during a chat with someone I'd never met before, an interesting question. I get disability questions all the time. Some about how I'm coping as a person with a disability. Other, intrusive ones, about my diagnosis and my medical history. I answer the coping questions and stare down the inappropriate ones. This time though, it was a fun question, "What's the most unusual thing that's changed since you've become disabled?"

The first things that popped into my mind were about the loss of status, the loss of respect and the loss of voice. I thought, too, about the stereotypes and the assumptions which are made about my life as a disabled man. I thought, I realised, way more about attitudinal changes than physical barriers, but I thought of those too. But instantly I knew that these weren't "unusual" changes. I think that they typify the life of many people with disabilities and if I thought about it before becoming a wheelchair user, I would have predicted many of those. So, I asked permission to think about it, then write it in a blog. I've emailed Jessie saying that this post was going up today.

5 unusual things:

1) When I use cologne I spray the top of my head. I never did that before. But I figure that if anyone is helping me or leaning down to talk to me, that's the part of me that they are the closest too. I never, ever, would have predicted that.

2) I have a nearly flawless ability to look at a carpet and know it's character. Many carpets are difficult to roll on one way and easier to roll on the other. I can glance at a carpet and know if going or coming is going to be more work.

3) So visible easy to miss - people talk to each other, standing right by me, completely as if I'm not there. I can roll around a store and be seen and not considered. It's a bloggers dream. I've actually had someone say to a friend, waiting outside a store, stand beside me and say, "Good, we're alone, we can talk."

4) Most of the stuff out of reach, you don't need anyways.

5) I am very aware of poop, vomit and snot. There is a lot more poop on the street than you might think. Saturday mornings are treacherous. The number of people who shoot snot out of their noses and on to the street is vastly more than I'd first thought. I have to touch my tires, I have to roll on the street. I'm pretty good, in my manual chair, at guiding my wheels to so that I miss the offending material. but sometimes it's unavoidable. If I'm in my power chair, I try to find some grass to roll on, or I do circles before entering a building, if I'm in my manual I ensure that I push on the wheel's grab bar and not on the rubber of the tire. Poop, vomit and snot were not things I thought about before.

It was a fun thing to think about so ... readers, tell me, what's the most unusual thing that's changed since disability entered your life??


Nitewriter said...

On the contrary, I find that when I used my mobility scooter or power chair, people tend to interact more. I'm a "kid" person -- I taught elementary school for years and I love talking to kids. They're at eye-level and are fascinated by anything motorized. They especially are enamored of the joy stick on the power chair. Once you start talking to kids, the parents follow pretty quick. There's always something to find to talk about with parents. Once a conversation is going, others (childless couples or single people) are drawn in. As for being overlooked in a store, it's never happened. Maybe it's where I live but people are quick to offer assistance with doors or reaching something if I'm just looking at something high up on a shelf, and to smile and/or nod and just look friendly. People around here are friendly, for the most part. Sure there are exceptions to the rule but those folks are totally focused on themselves and ignore everyone! If you really want to be not ignored, get a dog! I take my mobility dog places and I just plan to spend additional time out and about cause people always want to talk when you have a dog along.

jo(e) said...

These are things I've never really thought about before. Thanks once again for sharing your perspective.

Tamara said...

Well, those are certainly things I have never thought about #5 makes me want to disinfect my shoes.

wheeliecrone said...

When I started using my wheelchair, I discovered that many people think everyone who uses a wheelchair looks alike. I was mistaken for a bunch of women I don't look anything like! People would argue with me - alleging that they had met me at this or that conference in this or that city, when I knew for a fact that I had been on the other side of the planet at the time in question. It was quite tiresome, actually.
So I have a purple stripe dyed in my hair. That fixed the problem.

Colleen said...

Dear Dave:

I have been thinking about the 5 things all day. I could come at this from several perspectives but I think the one that I will write about is being the Mum of a child with a disability. Here are 5 things I learned:

1) People just stop talking when you show up with a baby who looks obviously different. They don't go goochi goo or tell you how cute she is - even though she is darned cute!

2) You don't need arms to hug.

3) You can form deep connections with no words.

4) People can be incredibly insensitive.

5) The world is hung together in mysterious and wonderful ways.

I could go on but I will stick with the 5 limit.


CJ said...

I am temporarily disabled. I cannot believe how many things I could do for myself without a thought of whether my husband or son would be home to help me. Prior to becoming disabled, and presently, I have felt the lack of status and respect due to my weight.

Anonymous said...

Five unexpected, although maybe not unusual things:

1. Like Dave, being somewhat invisable was unexpected. I am constangly amazed how "no one sees me" travelling down a sidewalk. I'm way more lethal :-)than before powering along - yet not a thought is given to my moving forward. Folks stop, walk right in front of me or look over me. Amazing.

2. Turning down invitations and opportunities due to the lack of or being unsure of bathrooms. I expected to have to "plan to pee" but didn't really think that such a basic function of life would limit my new existance so much.

3. I didn't expect the ongoing mourning - the constant loss. I realized there were going to be emotional struggles coming to term with things - but not the renewed sorrow of not being able to do for myself and others. Didn't see that coming!

4. My own intolerance has blindsided me. Wow! I always considered myself fairly patient and definately inclusive. (I have lived on the edge of bullying and abuse my whole life.) Yet now - in this vulnerable time I find I am very intolerant. When it rises I am shocked. I hardly ever say things outloud - for I know my thoughts are inappropriate - but boy oh boy - if folks could read my mind. Not proud of this.

5. The longing to go for car rides makes me smile. I didn't think that I would get so excited about it. I now get the "dog thing" - and I'm sure if I could, I'd wag my tail at the thought of it. To get out, to move at a fast speed, to feel the air rush into the window on my face, to see things beyond my walls and the shopping for necessities. I find that unexpected.

Lincoln said...

Hmm...5 things that have surprised me since becoming disabled.

1) Men getting judged based on appearance. Being trans and having people view me for most of my life as a female, I knew first hand that women are judged constantly for how they measure up to beauty standards. But I am always amazed at how much help I do or don't get depending on how I'm dressed. And it's not like you'd think. When I'm dressed down, people are much more willing to give up a bus seat or a chair, or help me with other things. Maybe I just look like a "proper" disabled person. But when I have on dress clothes, suddenly my cane is an accessory, and of course I don't need help at all. Amazing.

2) Being less able and more able to intervene in hostile situations at the same time. Even as a butch woman, I still benefited from the social idea that it's wrong to hit women. This gave me an advantage when I wanted to intervene if someone was being mistreated. I lost that when I became visibly male, because almost everything I did was seen as being an aggressive challenge. Now, sometimes I can intervene again because there's no honor in beating up a crippled guy. :-)

3) The amount of time it takes to cover small distances when I'm walking.

4) How much more gas costs for me because my car really is essential to being able to live. Without it, everyday life activities become almost impossible. Especially since I am the main shopper for my family.

5) I didn't give my friends in the LGBTQ community enough credit. They are way more understanding about disability issues than they were when I was homeless.