Where Is Our Community?

I just caught up on the end of Season 2 of Push Girls, and I love it. I love that these women go do awesome things that others probably think are impossible.  They go parasailing, kayaking, and drive race cars.  They are awesome women – I have even met some of them.  I chatted with Mia about our mutual dislike of a particular pair of gloves, and I caught Tiphany and gf Kim’s dog when he tried to make a break for it at the beach.  They have built a sisterhood, and much of it revolves around their shared experiences of using wheelchairs.

 

What many people do not realize is that there is a hierarchy to people in the Disability Community – the top tier are those who were born with a disability and always used a chair, or those who had a traumatic experience and are now paras/quads.  Those are the “cool” people, the ones who do not have their disability or use of a wheelchair questioned.  There are also those with disease processes so well advanced that they must use a wheelchair, and no one questions them.  These are often people who have been sick for a long time, and spent as long as they could fighting the need for a wheelchair.  That was the culture, after all.  Using a wheelchair meant “giving up” or “giving in to your disease.”  The elderly also get a pass when it comes to questioning disability.

 

Who does that leave?  People like me.  I can stand, and even walk a few steps.  I have good days and bad days, and my ability changes depending on what kind of day it is.  I use a wheelchair when I am not in the house (and sometimes when I am in it), and there is no end to the grief I take for using it.  I am hassled by others, sometimes people with disabilities, sometimes others, when I move my legs while in my chair.  I am questioned when I can climb down into a ride vehicle in Disneyland.

 

There are a lot of people like me – those of us on the cusp of full-time wheelchair use.  And I want to know – where is our community?  Where is our support?  There are countless foundations and organizations and charities that are devoted to helping people with spinal cord injuries or other traumatic injuries.  And there are foundations for a few of the more common well-known diseases, like MS.  But for the rest of us – we are on our own.  

 

There are no support groups for people who need to make the decision to use the chair full-time.  There are no charities that will help people like me, with spinal cord and nerve damage, but not from a trauma.  There are no television shows who want to show the daily struggle we face.  There is no community for us, as we watch our bodies slide ever further toward irreversible damage.

 

There was a time, shortly after I started using the wheelchair, that I basically pretended to be a paraplegic in public.  I really could not walk, nor could I stand or reach over my head – but my legs were only a small part of the problem.  At the time my skull and spine were compressing my spinal cord/brain stem, and cutting of spinal fluid flow.  This meant I had no balance, proprioception, or muscle strength.  But it was easier to pretend I could not move my legs than have onlookers staring and whispering criticisms to each other.  It was easier to pretend a more comprehensible injury, one that necessitated wheelchair use, than to have people actually come up to me and question my illness.  

 

Eventually I became comfortable in my wheelchair, and I realized that I needed to stop caring.  I knew I needed the wheelchair, my medical specialists knew I needed the wheelchair, my family believed and supported me, and that was enough.  So I stopped caring if people saw me cross my legs while in the wheelchair.  I stopped caring if people saw me climb into the boat at Disneyland.  And I realized that just as the women from Push Girls had created their own sisterhood, just as there is community for so many other types of disability, I and other need to create our own community, our own culture.

 

There are so many people out there who think they are “too young” to need a wheelchair, unless there is a trauma in their life.  In my experience, “too young” is anywhere from 20 to 60.  But it does not matter the age or the disease/disorder that gives the person the wheelchair.  What matters is need.  I need the wheelchair, as do so many like me who do not fit into a neat category for others to understand.  Too often, that means we avoid using the chair or pretend to be something we are not.  It is time we build our own support network, our own community.

 

We are part of Disability Culture, but only if we make the effort.  We are not fakers, attention seekers, or hypochondriacs.  We have disabilities that do not fit into a pre-made box, so it is time we made our own.  We think we are rare because we do not talk about it, but there are a lot of us out there.  And this is my first step in making my voice heard, my contribution to Disability Culture.  People put us in the category of “non-traumatic acquired disability.”  But it is traumatic – it is hard to realize your body is fighting back, or giving out on you.  It is traumatic to have to make a decision that will affect not just you, but everyone around you.  Too many of us do not get the support we need from doctors, organizations, friends, even family.  So it is time we started supporting each other, making our own community.  

 

Who knows?  Maybe someday we will get our own TV show.

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