After a personal 62-year journey, it was a paraplegic woman named Jennifer Longdon who finally made me take my disability responsibilities seriously.
Jennifer’s story is a tough one to read and if you follow her twitter account @jenniferlongdon, it hasn’t gotten any easier in recent weeks. That twitter feed for the last three months is as mesmerizing as any novel I’ve ever read. It was a Jennifer tweet, or a series of tweets, that made me sad, angry and responsible in a blinding flash.
Let’s back up.
I was 42 or so before I finally checked the box on the form that designated me as dealing with some sort of disability. I had spent the first years of my life denying that my Arthrogriposis Multicongenita made me any different from anyone else.
I learned to walk at 18 months in plaster of Paris casts. I had 13 surgeries before I was 16 years old. My right arm is mostly decorative. I have walked with a profound limp all my life. Yet, the words handicapped or disabled were never acceptable to me.
I wasn’t in a wheelchair. I was mobile. I could play flag football, albeit badly. I didn’t work construction but I could do any job that required me to think.
I spent much of my adolescence trying to prove to everyone I was normal. I damn near killed myself with reckless behavior trying to prove I was just like everybody else.
Even as my body began to break down with age and too much weight, I resisted handicapped parking decals and any other admission of personal frailty until I was past 50. Through that decade, arthritis ate away at my ankles until I decided something had to be done. I detailed in a blog post in October my decision to have an ankle joint fusion, the difficulties that followed, and the knee stroller and electric cart that were required.
That experience made me far more sensitive to the way the American Disability Act falls far short of solving the problem. Still, I wasn’t quite sure I wanted to do much to get involved in helping the disabled and journalists covering disability issues.
Then the Jennifer Longdon tweets slammed me over the head.
Jennifer participated in Ignite Phoenix. This link explains the program well, but this video of Jennifer’s performance explains it even better. If you watch it your tears and laughter are going to get mixed up into one dramatic and confused mess. It is brilliant.
The tweet that changed my attitude forever followed that presentation. It read like this:
“Lack of wheelchair access @ #ignitephx after party like being stood up 4 prom. Broke my heart. Truly. Please patronize iruna for kindess 2 me”
This tweet followed:”wish I could be there to see. Heartbroken that after party is not wheelchair accessible.”
I was at home following this on Twitter. I was beside myself with anger and frustration. This woman had invested her entire being in this event and she could not celebrate at the after party because it wasn’t wheelchair accessible.
I was clearly more angry than Jennifer. A day or two later she tweeted this:”Wanna say LOUD AND CLEAR, that I am grateful to every member of the #ingitephx team for a WOW experience. Glitches happen, you were great.” I was blown away by her graciousness but just as blown away that our society does not have a place for all of us.
That is when I accepted Kristin Gilger’s 15 month-old invitation to join the National Center for Disability Journalism. That center moved to the Cronkite School in 2009 and Kristin immediately asked me to join the board. I demurred for months.
I had still struggled with whether I was “handicapped enough.” I didn’t really feel called to help the center educate journalists on disabilities and journalism.
Jennifer Longdon’s rebuff at that after party changed that. I warned Kristin that while I accepted her invitation to join the board I was now a “born again” on disabilities and on the need to enlighten society on the challenges disabled folks face.
I am convinced most people believe the American Disabilities Act fixed everything. It did not. Sure, the sidewalk curbs are gone and public pedestrian access is improved, but people in wheelchairs still must climb mountains of challenges every day.
This I believe: Journalism changes minds and it changes society.
The National Center for Disability Journalism can enlighten and educate journalists that the ADA has not addressed all of the challenges disabled people face.
Thanks to the courage of Jennifer Longdon I finally have confidence I can be an effective part of that process.