Of Two Minds

It all started on Tuesday when I went to the Market to do some shopping. As I was making my way out again, a busload of tourists was disembarking and several of them seem to find it difficult to remember what their mothers had told them about staring at the unfortunate. Apparently where they came from, there's no such thing as free range wheelchair users. So naturally, I tweeted it when I got home.

And while I am on the topic of Twitter, let me take a moment to confirm what we all expected would happen given my slightly obsessive tendencies. I’m addicted. Last week, I twice wanted to tweet in public. Felt vaguely dirty. May need an intervention before I buy a smart phone and start tweeting every minute of the day.

Anyway! So I tweeted the experience and Lisa tweeted back asking me the following question: "how do you feel abt ads which use wheelchair image as the scary outcome to get pts to change disease-mod drugs?". And probably also not surprisingly, I was incapable of answering that in 140 characters, but it did give me the topic for today's post. And as the title indicates, I'm of two minds.

On the one hand, I am sick unto death of being held out as the worst case scenario. This one's all tied up in the stigma of disability, in us being defined as Other, the ones that people can look at - or stare at - and be grateful that they are not one of us. We are the worst that can happen, we are the freaks, we are the nightmare and quite frankly, it's a bit of a barrier to normal social interaction if one of the parties is busy being completely freaked out about the other. It is why people still insist on using the loathsome terms confined to a wheelchair and wheelchair-bound, neither of which are true. It liberates me – without it, I’d be confined to bed. The chair does not bind me, it frees me, enables me to live my life.

I've spoken to several people whose doctors recommended a wheelchair or scooter and tried to help them through the instinctive flailing, reflexive putting all four paws in the ground calming yelling nonononono. Because starting to use a wheelchair is giving up, letting go of hope, giving in, stopping the fight. But I see it as a tool, one that saves you energy, one that frees you to move beyond the immediate neighborhood because now you are no longer restrained by how far (or un-far) you can walk. Instead of using the energy to walk, you will now have energy left over to do other things that you didn't before because you were too tired and in too much pain. And I have seen people get their chair, go outside and rarely be home again after that because they were too busy living.

And on the other hand, I am in a very big sense the worst case scenario. Twice, I have that doctors tell me that if I got RA today, I wouldn't end up in a wheelchair and it's thanks to advances in disease modifying drugs, thanks to the Biologics that these days, the vast majority of people who get RA will not need a wheelchair. And I’m happy about that, because that should be the goal. The goal should be to prevent the damage to joints that will require modifications in the way you move around. Because of course, if I'd had the option, I wouldn't choose the seated life. I would choose more ability, the freedom that comes with walking - or, more specifically, the freedom that comes with your disease being managed so well that you never get to the point where walking is so difficult that it significantly impact your life.

However, the seated life was chosen for me and from this perspective, it really isn't the worst case scenario.


Crafty Cripple said…
I so agree that getting a wheelchair is not "giving up". If I didn't use my scooter to leave the house - that would be giving up. If I didn't use my wheelchair for days out or to go on holiday - that would be giving up. I have had this on ersation many times with people at my support group. Fuses things are vehicles that enable us to live our lives. We don't expect healthy people to walk everywhere. No one bats an eyelid at someone using a car, why should scooter or wheelchair use be any different! This the mode of transport I need to use and I am going to use it rather than remaining locked behind closed doors where the narrow minded are not disturbed by a young woman on a scooter.
Anonymous said…
I admire your patience in dealing with people who stare. My first response was to think, "well, if I was in that situation, I'd just give the stare-ers a big old smile -- that would either startle them enough to stop staring or start a conversation that might be educational. And maybe I'd meet some new friends." THEN ... I thought about it a little more. And I realized that this must happen so frequently that being Miss Happy-face gets pretty darned old. So now I'm back to admiring your patience. ;)

I have a friend who resisted using a chair or a scooter for a long time. She saw it as giving up. I saw it the same way you do -- as a valuable tool that would allow her much more freedom and a lot less pain. She does use a scooter now (her disability is osteoarthritis of the knees and morbid obesity), but she still dislikes it, and frequently tells me about how people stare. So rude.

I guess none of us will ever be perfect -- I've done my share of covert staring, too, over the years. But I'm learning more about ableism all the time. We can only try to do better, you know? Here's hoping your adventures today will be much more positive and pleasurable, Lene. Love your blog and your writing. You always get me thinking, and your writing is beautiful. Thanks for being here.  :D
Wren said…
Oops... this guest post was by me, Wren, of RheumaBlog. 
Gaina said…
The 'wost case scenario' thing gets my goat too....which is why I'm always searching for new and unusual ways to freak people out.  So far I've succeeded and they don't even notice the wheelchair! :-P
Anonymous said…
I think that this could also be titled "a healthy attitude"!   

People are continually making me nuts.   I'm using crutches right now.  But everyone keeps telling me how sorry they are, how awful it must be, etc etc.   But for ages, I've been NOT doing what I wanted, because I walked too slowly, and my knee hurt too much afterwards and all that.  But now that I got my crutches, I can do just about whatever I want!   I LOVE my crutches, they represent freedom for me, and that *is* how I've been phrasing it, too!   I'm doing PT, I will likely not need them for more than another month or two, but I don't care.   I'll use them as long as I need them...they aren't a problem, they let me walk!   

(I got pink forearm crutches, underarm ones are the pitts, (ugh) and my new ones are pretty, I made knitted covers for the grips, and have hot pink fabric covers on the cuffs.   I've got the prettiest crutches around.  Why shouldn't I use them as a fashion statement?).   
colleen said…
I dislike this format, that I know you dislike, too, Lene.  I'm the guest "healthy attitude"
lene501 said…
We're trying to figure out a way to export my old comments into nother system. So far, not quite sure how. If we knew, I'd change commenting systems immediately, but I'd really hate to lose 5 years of conversation...
AlisonH said…
I refused to consider a cane for a year after my car accident: I was going to retrain my brain to be able to make it through without resorting to that. Never mind that I had to basically relearn how to walk because my left side kept collapsing. (Thank you, speeder in the Toyota behind me.)

Once I saw the screamingly obvious and got one, though, it absolutely amazed me to finally see--to let myself see--how very limited I had become without one.  My balance was now tactile-based--use the stupid cane, fer cryin' out loud! And make sure it's a really unusual, cool-looking one like that sassafras wood one by way of silent announcement that no this isn't temporary, thankyouverymuchforlooking, people.

And when I have one and they don't and I'm out enjoying the day with a smile on my face, I'm telling them this: that I know something they don't. They still have fear. They still have to face the various eventualities that happen to everybody. I don't. I already know I can cope.
Jocelyn said…
I have a student who, in the time that I've known her, has gone from needing no aids to mobility, to a cane, to a walker (among other things, walking through campus with her has made me SO much more aware of the extent to which our world is constructed in a way that completely fails to take into account the use of things like walkers and wheelchairs).  I really appreciate reading your articulation of two minds, because I think that this is exactly the back-and-forth that she has felt as she struggles against the next level of aid, then appreciates the mobility that comes with it, then goes back to wishing she didn't need anything at all...  Thanks.
Gary Presley www.garypresley.com said…
I've been riding around my fanny for fifty years, and I've multi-met every type of reaction, from the "Jesus will heal you!" to the "Let's not hire that freak. He's in a wheelchair. He'll never show up for work."

Even at that I'm still a tad self-conscious about my wheelchair, on rare occasions anyway. I try to move about in the world without rattling other peoples' cages, but I still make use of wheelchair seating in theaters and those nifty parking spaces. I've come to believe this big red battery powered thing is as much a part of my life as my glasses that I put on in the morning. With that, I've become less shy -- that is, I don't want to unnecessarily bother other folks but if it takes bothering other folks to get what I want, I bother them.

I've also gotten to the point where I gauge my reaction to other peoples' reaction. If someone is a jerk, my answer is usually surrealistic. Not mean. Not angry. Just slightly off the wall. Kids are another matter. I try to interact with them, to let them know that people in wheelchairs are part of the real world. But as the Jewel song says, "Only kindness matters ... " and so I've stopped trying to take responsibility for other peoples' attitudes and failures, which in turn means that I ain't gonna let some idiot's idiocy about disability color my world. 
Elizabeth said…
My mother has dealt with osteoarthritis in her spine for 30 years or more.  She has and wears a Philadelphia collar - it used to be all the time, but now it's just occasionally.  She has and uses a TENS unit.  Somedays are better than others.  She walks 2 hours a day and exercises (strengthening exercises) an hour.  Sometimes she goes back for a course of PT when things are getting bad.  She's one of the most active people I know.
My MIL has developed some problems with her back.  She rarely goes out.  She won't consult the MD because he suggested PT - she went twice, it hurt, so she didn't go again.  She and my mom were talking.  My mom was suggesting she might be able to do more and describing her own experiences.  My MIL's opinion is that she herself is much less badly off than my mom because if she just sits still it doesn't hurt, and as long as it doesn't hurt she doesn't plan to worry about it.  I think a lot of it is that she doesn't want to look different.
I don't get it.  But I know which one I plan to emulate.

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