A Different Disability Perspective.

Irony.  Here, I have been blogging since late January about the struggles of raising a child with a disability.  Then, I do a stupid move trying to answer the phone and smack my knee at full speed into our hardwood floor while running.  Now, I am the one with the disability, blogging about struggling with it myself.

There is no cracked bone but there is fluid in my knee that completely prevents me from walking – at all.  So, now, I am learning – on a temporary basis- what it is like to get around without using one of my legs, a totally different kind of disability.  One where I am facing different challenges.

My mom, who got out of the hospital on Monday, has a wheelchair that she got from her last release from the hospital that far surpasses her four little wheel, folder-upper wheelchair.  Guess who’s using that now?  Yeah.

I can’t use the crutches because the movement of using crutches sends me into excruciating pain.  If I’m still however, the pain is minimal (unless I move my leg or foot the wrong way).  So, I’ve borrowed mom’s extra little wheelchair and I’m putt-putting around the house and office on my right leg.

I can’t do the simplest of chores.  I can’t get to the drawers where I keep clothes because the space between the drawers and the bed is too small to fit the wheelchair.  I have to get up – hop along the bedside – endure the pain – balance on one foot, get out clothes, hop back to the chair, and wheel myself around.  Those steps are exhausting but necessary.

This chair does not have the kind of wheels that you can use your arms to propel.  So, I am using my right leg to push me around.  The carpet in our house is like wheeling through sand.  I’m feeling hamstring muscles which have not been used on this kind of regular basis in quite some time.  These muscles are not shy to let me know they are there – and they are mad at me.

I cannot take a shower, without assistance over a raised step area.  My husband did get me a shower stool which is a really funky weird way to take a shower.  I have already learned how to hobble myself out without assistance and do all my other basic living chores without any other help.

But let me tell you.  This is not easy.  I’m seeing the difficulty of a new kind of disability in a very personal way.  And it’s hard work.  I suppose, if I had to, I’d get used to it.  I could get by for the most part.  But, people who do this as a way of life have a whole new respect from me.  They have to be very strong and patient every day.

The hubs took the little one and me out on Sunday afternoon and wheeled me around in the mall.  The very same mall in which the little guy has had all his tantrums.  It was – first of all- embarrassing for me.  Too many people know me, and so I was obligated to explain the stupid way I injured myself, repeatedly.  They were all nice to my face but who knows what they said when I left.  Although, I really don’t care.  I’ll be up soon and it will all be forgotten (I think).

The interesting part was how no one stared.  No one took a second glance.  No one was overly accommodating or pitied me or treated me any different than when I was walking around.  That part was decidedly different than it was in the heyday of our mall meltdowns with my son.  Everyone would stare or give me dirty looks or ask my son if I was being mean to him because of his behavior.  I would get shunned, told what to do, or pitied.  Everyone knew how to parent my child better than me.

But, in a wheelchair?  No one treated me differently, except to hold a door or make sure I had room.  So, what gives here?

I’m clearly disabled for any unknown reason to a stranger.  I’m not elderly appearing (at least I think not) and I’m not being look at with disdain in the chair.  So, the physical disability is recognized and accepted?  The neurological disability is neither recognized nor accepted?  Or just mostly not recognized, and in its place is a perception of bad parenting on my part?

My son has vacillated between not liking the wheelchair (Mommy is too slow getting to where he wants me to be) to loving the wheels and trying to hitch a ride. He has started pushing me around when I get to the hardwood or tile part of the floor because he’s learned he can get a ride on the back with a little push.  (Sneaky kid!)

It’s a great thing about him.  He knows it’s just me, mom, riding this wheeled chair.  He loves me just the same.  He’s not treating me different.

It makes me realize.  He has no prejudices.  He has not expressed any fear or dislike for any person irrationally based on differences.  Maybe that simply because being autistic means he doesn’t always notice the differences, or he thinks those kinds of differences are not meaningful on a very natural, innocent and wonderful level.  Any way I look at it though, I’m learning a new appreciation for those who do not use legs to propel themselves about.

I’m learning my son bears no prejudices based on differences in appearance.  And I’m learning that most places do a lot to accommodate those with physical disabilities.  Wouldn’t it be nice if most people and businesses equally understood and respected those with autism spectrum disorder as well?

I think so too.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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14 Responses to A Different Disability Perspective.

  1. This is a tough post for me to talk about — but maybe I can shed a little light on the differences you’re seeing. Your son, my daughter, and I all have *invisible* disabilities — well, invisible to most people as long as we can keep the symptoms in check. In my case, the symptoms are the pain and swelling I have when I get an RA “flare.”

    Most of the time, I’m “normal.” I get around just like the next mom at the mall play land and put Little Miss in her pull-ups just like anyone else… one leg at a time. But there are days when things are decidedly not normal. Days when I need to go slower or when my husband has chase Little Miss. On those days, I wear jeans to hide the knee braces or ankle brace. I have a cane, but I am loathe to carry it. Instead, I lean on Little Miss’s stroller and go really really slow.

    I imagine people get annoyed walking in the mall behind us. I see side-long glances from moms in the grocery store as my husband cares for our child and toggles the shopping — while I do what appears to be nothing. In reality, I’m doing the best I can to just stay standing.

    The difference is between what people perceive to be possible and what they actually see happening. Your son, my daughter and I are *perceived* to be “normal.” Based on perception, the three of use *should* be doing the same things that are expected of any person our age, ability, and intelligence. It’s just that sometimes we can’t. And people don’t understand why.

    It might be easier if we all had handicap stickers attached to our back sides. Then people would know to adjust their expectations. Not lower them. Just adjust. But I for one, and not ready to play that card.

    Anyhow, I think that’s what you saw in the mall. Most of us are educated about “defferently-abled” people. When we see a wheel chair, we know that the person in it is no less a person. We just adjust our expectations to accommodate the difference. Without so obvious a visual cue, the adjustment is harder to make.

    Sorry to go on so long, but I had to give my two cents on this one. I guess yo really struck a chord with me. Hope you’re up and about again soon! 🙂

    • Sorry… that last line int he almost last paragraph should have been “with *no* obvious visual cue, the adjustment is harder to make”

      Little Miss is starting to wake up and it’s a little distracting… LOL. Talk to you soon!

    • solodialogue says:

      You said that so well, my friend. Visual cues about disability steer most people’s perceptions. If you can’t see it, it must not be there and judgmental attitudes kick in. I guess it’s just human nature. Now that I’ve made my way up to a limp, I’m still not getting funny looks or anything… They can still see there is a physical problem, and everyone has been kind. I wish we could all be kind no matter what but I believe that’s called Utopia. I wish I knew how to get there… 🙂

  2. Sorry about your accident- I hope you feel better soon. Try to enjoy a little break from all the everday work in the meantime (if you can).

  3. KWombles says:

    I hope your knee’s back to normal soon. Interest post on the differences between how you were treated in the wheelchair versus the reception you’ve gotten with your son.

    • solodialogue says:

      Thanks Kim!! I really was excited to see that you dropped by. It was too bad that there was a difference in treatment. I guess knowing and understanding our “invisible” disability is the answer and education seems to still be the best key to get there.

  4. Julie says:

    Ouch! Feel better!

  5. Brian says:

    When do we get details about how exactly this knee injury happened? You are being deliberately vague and mysterious.

  6. Pingback: A Different Disability Perspective. | Solodialogue « Better Disability

  7. eof737 says:

    Yes, sadly there is discrimination against people with disabilities that are not apparent. When people put each other into perfect little boxes and label them, they feel better because they know what X is… I wish we could all be more compassionate and nonjudgmental.
    Hope you recover soon! Love to the family 🙂

  8. Oh no- hope you get better soon! As a teenager I remember being struck by how people addressed me and not my friend in her wheelchair when we were out together. It drove us both crazy. Interesting to be on the other side of that, with a child who has an invisible disability.

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