Tuesday, February 28, 2012

Disability Click Moments

'Parking bay' photo (c) 2009, David Morris - license: http://creativecommons.org/licenses/by-sa/2.0/


Those of us who are not born with a disability, must come to terms with the loss of our able bodied status.  This is something that must happen, regardless of the type of disability that is developed.  I have written several times about the loss, and the mourning period that I personally experienced, and so today, I would like to focus on something that I call my disability click moment.

About two years ago, I went to a Walmart with my family to get some shopping done.  This is something that should have been no big deal at all.  As I began to walk through the aisles with my family, the pain started and very quickly it became intense.  I went to the area where they keep the patio furniture to sit and try to rest.  Though my family waited patiently with me to recover, I knew I was the one keeping them from finishing the task we set out to do, and so I got up, and once again tried to finish our shopping.  After being on my feet for a few minutes, I again had to return to the patio section to sit.  This is a cycle that I repeated several times, which led us to spend about three hours picking up a few household items.  When I got home, I was covered in sweat and my body hurt so badly, I was in tears.  After this trip, I was bedridden for three days.  I swore to myself never again, and then I realized that never again meant being trapped in my home. 

This is when the depression hit.  I realized that I was sentencing myself to a life inside my home.  I was a very active person before becoming disabled.  I could always be seen around town doing things with my children, and the very thought of sitting on my couch waiting to die depressed the hell out of me. 

It was my unhusband who suggested that I get a mobility scooter.  At the time, I didn't think I needed one, because those were for real disabled people.  It wasn't until we went to Zellers a week later, and I used their scooter, not wanting to be in the same kind of pain that I was in at Walmart, that the light bulb went off.  Suddenly, I could keep up with my family and go wherever they wanted to go.  When it was time to leave, I didn't want to put the scooter back.  It was in that moment that I knew I needed a mobility device and decided to do what I had to, to get one.

This is the moment that I decided that yes, I am indeed disabled and it's okay to do what I have to do to live my life as I see fit.  There is a ton of stigma when it comes to obvious signs of disability.  Whether it's a cane, walker, wheelchair or scooter, it announces to the world that one's body is different and this instantly changes the way that people react to you.  This btw, does not mean that there aren't problems associated with invisible disabilities, like being neuro atypical for example. 


Because there is a lot of gatekeeping with a disabled identity, it can be tough to decide that this is a label that accurately describes who you are, and how your body functions.  If you are person who was TAB at one point, and are socially aware, you may feel that you are infringing on an established minority, just by seeking to take on the label of a disabled person.  Perhaps, it may be a case where you have not been declared legally disabled, but still find the way that your body functions, for whatever the reason hugely impacts your life.  Despite all of the gatekeeping that goes on, by both the medical establishment and society, nobody knows your body better than you, and that means that no one is better suited to make the determination of whether you are truly disabled better than you.  Once you reach that point, it can be extremely empowering. 

In my experience, taking ownership of my disability was absolutely one of the most powerful things that I have ever done.  Doing so has given me the strength to demand accommodations when they are needed, and to look out for my best interests.  TAB people, are always going to expect you to rise above, and push yourself beyond your limits, but when you are empowered about issues surrounding disability, you are less likely to capitulate, and this leads to a healthier version of you. Coming to terms with disability means understanding what your limits are, and loving and accepting yourself for who you are today. This can be a difficult journey, because we are all taught that disabled people are to be pitied.

I chose to write this today because I got an email from someone who is pretty much in the exact place that I was three years ago.  It broke my heart to be honest.  At the time, I was very lucky, because I had an extremely strong support system -- as well as a member of my extended family -- who had been through similar circumstances to lean on.   If I didn't have these people in my life, I doubt that I would be as adjusted to my differently abled body, as I am today.  

There simply aren't enough conversations about coming to terms with disability, or understanding that it is okay to take on the label of differently abled.  There aren't enough conversations about how empowering this can be.  I would like to limit the comments on this post to people who are currently living with a disability.  Please share how your disability has effected your life, and what helped you to move forward -- to do the things that you needed to do -- to be comfortable and happy.  Enough with the shame.  Life is for living, and disabled people are entitled to as much comfort, access and happiness as anyone else, regardless of what the disability is.