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Disability confidential. Informing. Empowering. Agitating.
Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
 
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

Navigating An Imperfect World

After nearly nine years living with a spinal cord injury, I cannot begin to count the times I’ve told myself:  society is still not ready for people in wheelchairs.  I recognize, even tolerate at times, society’s shortcomings, but I will not fall victim to them.

A day in the life with paralysis can be an adventure, to say the least.  I’ve learned lessons confronting this adversity, but on any given day challenges still arise.

Heads often turn in my presence; I can hear whispers ranging the spectrum from curiosity to downright bewilderment.  Strangers on the street offer to pray for me.  Sporting arenas and concert venues regularly struggle to seat me and my friends near one another.  I fear some wheelchair policies assume we only have one friend or caregiver.  Even doctors, at times, shock me by how little they know about my condition.  And then there are the classic challenges.  Sidewalks and blocks I avoid completely; restaurants and bars I don’t visit, to say nothing of the countless buildings and institutions I’ve never wheeled through. 

Other times, society—as well as technology—seems to be catching up to the hopes and dreams of wheelchair users.
 
After all, I’ve lived completely independently for the vast majority of my adult years; I can drive a car with the help of a single lever; airlines accommodate me on flights; public transportation (at least in Washington, DC) is equipped to handle me, and I’ve never once had a workplace need go unmet.
 
As I write this blog over 500 athletes with physical disabilities are competing at the Paralympics in Sochi.  Just last month I read about a female model in a wheelchair participating in New York Fashion Week.  Consistently wheelchair bloggers appear on websites like the Huffington Post.  And this summer a paralyzed teenager will make the first kick of the World Cup wearing an exoskeleton suit that communicates signals from his brain to the rest of his body. 
 
As transformational as change like this may be, it never comes fast enough and rarely encompasses the whole community.  And so the struggle between stagnation and progress forces oneself to develop their own tools.
 
Situations vary but you must laugh; must educate others; and must speak up for yourself.  It’s the only way to move forward. 
 
Humor is the silver lining in the many unique interactions that are my life. A stranger’s misguided words or prayers become a funny story to share with friends.  However, taking a moment to educate a well-intentioned person, such as a doctor, a co-worker, or a new acquaintance is almost always time well spent.    Most people I encounter are good people and they genuinely appreciate feedback.  There are nastier times too though, situations when speaking up and speaking out is the only way to get the right solution over the easy solution. 
 
Perfect tools or not, these are ones I use, because I know the burden of letting these situations go unaddressed will ultimately become too great.  I’ve always gone to great lengths to avoid the stereotype of being an angry wheelchair user, yet I refuse to fulfill the stereotype of a helpless one either.

© 2014 Dan Griffin
Posted by Dan Griffin on Mar 26, 2014 2:20 PM US/Eastern

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