Showing posts with label physically disabled children. Show all posts

Guest Blog: Trick Mirrors

This is a guest blog post from my friend K who talks about her ideas of being different and seeing different. She is much more gutsier than me when it comes to physical appearance, so I'm glad that I have someone a little more willing to let us in on her thoughts on such tricksy topics. 
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My entire childhood was spent trying to fit into a world that was forever screaming at me that I was different and that I would never fit into it. Growing up, I was mainstreamed as a kid with a physical disability into a world of non-disabled peers. I struggled socially a great deal especially in high school where I faced the most alienation I have ever felt in my life. I was different and chronically ashamed of my disability for making me different. Although my disability, to me, was clearly the root of the ignorance I felt from my peers, I still found myself dealing with a peculiar consequence that I blame on trying to fit in to a world that appeared to function in a way that didn’t want me.

Having a physical disability among a sea of non-disabled people can greatly alter one’s perception of themselves. I grew up doing everything in my power to be like my non-disabled peers. In a lot of ways, my quest for normality resembled that of any child trying to fit into the cookie cutter society we live in, except when it came to my altered perception of myself. By the time I accepted my disability as something that was truly apart of my identity and something that I never needed to be ashamed of, I had created a non-disabled perception of myself. In my head, I had the appearance of a non-disabled person... 

If this makes me sound crazy then let me go on to say that this image I had of myself was that of my personality, and not so much that I thought that was what people actually saw. But to me, this perception was so powerful that when I looked at myself in the mirror, sometimes still even to this day, I’m shocked by the person that stares back at me. I’m taken aback by just “how disabled” I look and that this is how people actually see me. Involuntarily, I usually straighten up my terrible posture and elongate my O.I.-riddled-lack-of-a-neck. Sometimes I find my reflection so amusing I sit there for far too long, continuously making myself laugh by making myself look more distorted than I actually am. Eventually though this goes away, and I get used to the person staring back at me, actually appreciating her uniqueness. The phrase, “it could be worse” often comes to mind and then I start to feel guilty about not always being positive about my physical appearance because yes, it could be worse but this is what I have, and I remind myself that it’s time to get on with my day. 

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A Close Look at Staring

Maybe it bothers me because I am not comfortable with my physical self, not completely anyway.

Although I have written before about what I would like to tell that other person who is staring at me, and what I actually do tell that other person who is staring at me - I don't think I have written about why exactly it bothers me. So that's why I started off with the sentence that I did, just to .. you know.. get it out of the way, and to just put it out there first.

When people stare at me I feel wrong and out of place. Let's be very clear right now: It isn't that I don't like knowing that I am different (and that others notice that I am different) - because that is not the same as feeling wrong. In my opinion feeling wrong is a much worse feeling than being different.

Being different isn't really something that is new to me. I have more or less always known this and it's just what my life is. It hasn't always been easy, but at the very least I have always known what I am getting myself into when it comes to being different. I've had at least two decades worth of practice at being different, and probably many more years of it to come! I have had practice at figuring out how to be different, how to enjoy being different, how to be comfortable with being different, how to fail at being different, how to find others who are also different.. the list goes on. What I am trying to say is that I have had the privilege, and support around leading a lifestyle that is different from the majority. And on most days I am fine with it.
But when it comes to feeling wrong because someone is staring at me - there isn't always something that I can do about it...other than to sit out the feeling. Wait till that person continues walking on. Wait till they stop staring. Wait till I get used to something that.. honestly.. I wish I didn't have to become accustomed to. Or just ignore them - but that feeling, at least some residue of it, still leaves even some tiny tiny trace of it inside of me. I can adapt to being different, but I haven't always been great about adapting to feeling wrong. In fact I don't even know if I ever will be able to!?

I know, I know, I know that when people stare they don't usually intend to give off the impression of making me feel wrong. And because I like to give people the benefit of the doubt, I am sure most are just curious and maybe if I stopped to say "hi" the majority of those who stare at me are probably very nice! But that doesn't change the fact that initially they still make me feel wrong. Like one of those pictures little kids work on that ask them to figure out "what doesn't belong in this picture?" And usually in instances where I am being stared at the answer is always: me.

Here's why I think 'feeling wrong' when I am being stared at is not a reaction I want to be having:
When my friends who are also young women (without a readable disability) are being stared at, they do not feel wrong. Some of them feel like they are being wronged. And others feel like it's something of flattery or a compliment, a positive thing! But rarely have they ever commented on their individual selves as feeling like the error at fault.

To get back to where this post began: maybe it's because I'm not comfortable enough with myself in a physical sense, that I feel wrong. My lifestyle of being different has lead to many failures, but also one of some success. There isn't anything wrong about being different. It has been challenging at times, but never wrong. I have yet to find that similar sense of accomplishment in my physical presence in a way that makes me confident and proud of it. Certainly it isn't measured by the relationships I've been in, or even the dates I go on. It's not really found in how many laps in a pool I can do. It's not in way that I can ambulate myself around the house without my wheelchair.

I cringe because there are no answers in this post. I'm not sure where that feeling of righteousness will be found, but I'm pretty sure that continuing my lifestyle of being different will get me there sooner or later. Damn I sure hope so.

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How-to: Sit for endless hours

By the time Thursday morning at 6AM rolls around my body is audibly grumpy with me. If I could imagine it speaking it would probably say something like:

You better not fold me back into that wheelchair. Do you know how many 90 degree angles are involved in sitting in a wheelchair? TRY COUNTING THEM SOMETIME! And while you're at it, try counting HOW MANY HOURS you make me sit like that for! You are now in your 20's and you've been doing this everyday for the past two decades - you do that math!

...Sorry body, but there isn't really a choice for you.

Aaron Fotheringham takes wheelchair sitting to the xtreme!


Sometimes I get dull aches and pains in my hip and in the upper part of my femurs when I have been sitting for too long. At worst I am actually afraid that I will fracture something if I suddenly move out of position! My bones will give me a sharp jolt, like a reminder hey, we're quite comfortable like this. Don't you go moving around now! It wasn't until very recently that I had the nerve to twist my upper torso around in my seat; the first time I did that I felt something pop in my back I was horrified and filled with dread. What just happened? Did I just break my back? I've never popped my back before! After consulting with a friend about what "cracking your back" feels like, I was relieved to know that the little 'pop' I had felt was... normal. 

"What? You're tired? How are you tired? You don't even need to do anything, you just SIT all day!" How many of my readers have been asked this question by baffled friends and family? Usually I am far too exhausted and don't even know WHERE to begin with my response. How would non-wheelchair users ever understand what it takes to constantly be sitting upright, knees and hips bent? Would they understand that budging even a little out of our seats could end up in a fall or worse an injury? And even though most wheelchairs are fitted to ensure growth space - that wiggle room doesn't provide much liberty to unfold from an 8-hour workday of being rigid. 

Needless to say, after this work week is done I am looking forward to collapsing into bed as I do at the end of every week. I love those first few minutes when I stretch. It's relieving, re-energizing, and in an odd way makes me feel happier. When I was younger I used to pretend that the sensation I was feeling whenever I stretched was me actually.. "growing" every time I did it. 

Stretching in a wheelchair:
  • For younger kids, if possible, the school day should be adapted so that there is time spent out of the wheelchair. Whether it's sitting on the floor with the class, getting out of the chair during recess, or participating in gym class, or having physical therapy sessions at school it's important for younger kids to maintain as much mobility as possible
  • Many wheelchairs have the ability to recline, tilt, even stand-up! If it's appropriate see if that's not possible for you. Also, if you have these capabilities - make sure that they are actually used from time to time, otherwise gears and switches can get stuck from years of not being used. I used to only use my wheelchairs recline ability when I had a long leg cast, but I've come to learn that it's handy to use even when I don't have a fracture
  • Footrests that extend or swing away help "free up" space to move around, even if it's just to swing your legs back and forth
  • The internet has loads of upper body stretches and exercises that you can adapt to your own physical abilities or work with a physical therapist to come up with others
  • My jay J2 gel seat cushions have been a LIFE SAVER  
  • Usually if I am at my desk and my wheelchair securely locked, I take off my seat belt. I know that this doesn't seem like much, but being able to move forward and away from the back of my wheelchair seat has given me a couple of extra inches of free space to move around

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