Not Disabled Enough?

A few weeks ago, I was excited to learn that a spiritual conference was going to be held in Minneapolis, featuring Gregg Braden and Sunny Dawn Johnston.  While I’d never heard either of them speak, I remembered a friend telling me how inspired she was by Sunny Dawn at a conference we attended in Chicago.  It’s rare for people in the realm of spiritual growth to visit Minneapolis.  Usually, I’ve had to travel out of state so I can hear the people who have inspired me through their writing.  Since going on disability, though, this hasn’t been a possibility due to the expenses involved.  I thought about the amount being charged for the conference in Minneapolis and knew it wouldn’t hurt to contact the person in charge to see if there was a way I could make it affordable.  Via e-mail, I explained I was on disability and asked if one of two things was possible:  Were there scholarships available?  If not, could I volunteer for a couple hours so I could see one of the keynote speakers?  Last week, just a few days before the conference, a woman responded and said she would give me a pass to one of the two speakers.  All I had to do was let her know which one.

I was greatly looking forward to hearing Sunny Dawn Johnston and arrived at the convention center with time to spare. I asked the registration desk where this woman in charge of tickets could be found so I could pick up the ticket promised to me.  When this elderly woman appeared, I introduced myself and said, “I’m the one who has been e-mailing back and forth with you about the free ticket.”  She looked at me in disbelief and said, “Are you the one who is supposed to be sick?”  What an odd question!  I’ve never thought of myself as sick before, so I answered, “I’m the one with a disability.”  She shook her head and said, “Well, I thought you were going to be in a wheelchair,”.  I looked right into her eyes as I replied, “Just because you can’t visibly see the pain I’m experiencing each and every moment of the day doesn’t mean I don’t have a disability.”

With that, I leaned over on the counter to hold my head up because the stress was now getting to me.  And I waited!  After going through all the trouble and pain to get there, I wasn’t about to leave.  As she putzed around trying to figure out how to get me into the session, I thought about my messages to her.  Had I misled her in anyway?  I never told her I was confined to a wheelchair.  I explained what my condition was.  And I laid out a couple of options to see if one would work.  How is my neurological movement disorder any less of a disability than someone who is confined to a wheelchair?  Sure, it’s visible all of the time for the world to see if you are in a wheelchair.  But because I can walk short distances and only need a wheelchair at the airport, she was insinuating that I wasn’t deserving of the admission she had promised me.  I did not say anything more to her.  Within five minutes, she escorted me part of the way to the ballroom where Sunny Dawn would be presenting in  a matter of minutes.  I was upset to an extent, but I wasn’t about to let this incident ruin the experience I trekked there for.

As I waited for Sunny Dawn to take the stage, I reflected on the norms of society and how one woman would naturally assume I was in a wheelchair.  What propaganda is out there that we see every day, coloring the perceptions of a culture in regards to those of us who live with a disability or chronic disease?  The first thing I thought of was the visuals people see when certain areas are identified only for people who have a disability.  Handicapped Parking, now called Disabled Parking, has one picture.  You all know what it is, right?  It’s a wheelchair.  Signs for bathrooms and bathroom stalls have the same visual, not to mention the Disabled Parking placard I have that my doctor prescribed for me, so I wouldn’t have to walk so far when I’m doing errands close to home.

How is it that a disability has become synonymous with a wheelchair?  I don’t know what an appropriate picture would be, but it would need to be all-inclusive since there are so many of us with chronic pain who are not in a wheelchair.  Maybe a picture of a normal person standing side by side with a person in a wheelchair, accompanied by the phrase “Even though my pain may not be visible, it’s just as real as the pain that is.”  Before last weekend, I never would’ve questioned how disabilities are marketed.  But now, more than ever, I strongly believe we have to educate the world about the reality and truth that lies behind disabilities. All symbols are not equal!  I may not be in a wheelchair, but I had the same right to be offered a complimentary ticket as someone in a wheelchair.  It’s up to us to change the perceptions our society has of people with chronic pain.  While many people are unfortunately confined to a wheelchair, many are not.  Those who don’t still suffer in ways that are unimaginable, unless you’ve experienced the symptoms yourself.  Again, look around you.  You may see 10-15 people throughout your day who have a disability but you don’t even know it.  Do we need to wear t-shirts or bracelets to identify ourselves?  Seriously, how can someone tell me I’m not as handicapped as I should be or that I must not be “sick” at all?

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MY HOPE:  My hope is that you will help me change society’s perception of those in chronic pain.  Just as healthy people don’t all look the same, those of us with chronic conditions don’t look the same either.  The fact that I am not in a wheelchair should not be held against me.  I feel compassion for those who are, and perhaps the visibility factor makes it easier for others to be compassionate towards those who are wheelchair bound.  But we need to have compassion for everyone around us.  My condition is not better or worse than someone else’s.  It is what it is.  How do we change these perceptions?  How do we get our government to change the logo from a wheelchair to something more inclusive?  If you know someone who can make a difference, please put that person in contact with me.  This is a battle I’m willing to fight as long as it doesn’t interfere with my health.  Finally, my hope is that I can have compassion for people who don’t know any better than to assume having a disability is akin to being in a wheelchair.  It’s our job to teach them otherwise, and I’d love to have the woman at Edge who opened my eyes to this presumption ready this post so she can learn from the experience as well.  Then she can spread the word too!

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