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.

The criticism leveled most often at journalists is we have amnesia. We get incredibly excited over things like tsunamis, hurricanes and oil spills and then we tend to forget them even while real suffering continues.

The same thing happens with large societal issues. There is certainly an argument that we got smug about race relations in this country until President Barack Obama’s campaign and election highlighted some ugly realities. Intense personal experience in the last six weeks has made me realize journalists and society have suffered severe amnesia on the issue of disability in America.

Your first reaction is probably similar to my view prior to July 21. “Thank God, the American Disability Act fixed all the mobility problems the disabled face every day.” Horse hockey. I am here to testify that without the ADA disabled folk would be totally lost, but wipe the smug look off your mugs because the disabled still face a long, uphill climb because the ADA is being followed only “technically.” I fear the remaining challenges will get worse because minimal compliance now seems to be the standard. And from my perch, journalists are totally oblivious to the fact that new buildings are being built that are incredibly difficult to navigate.

Some background seems necessary. I was born with a congenital birth defect called Arthrogryposis multicongenita. My parents were horrified and worried I would never walk. After 13 surgeries in 16 years and countless casts and braces I was, while not normal in carriage and stature, certainly functional. Functional enough to run a major metropolitan newspaper for 20 plus years in one capacity or another.
For most of my adult life I never, ever, wanted to be considered handicapped.

There were two reasons. One, I wanted to be judged along with everybody else and wanted no breaks. Secondly, I always felt like a bit of a handicapped dilettante. When I was a kid, crutches, wheelchairs and braces were either toys, or hurdles to leap to show people I could not be stopped. As an adult I felt that as long as I was mobile I wasn’t “really” handicapped. People in wheelchairs and other assistive devices were challenged in ways I knew I could not appreciate.

I now have just a bit of that appreciation

On July 23, after years of terrible ankle pain I elected to have the bones in my left ankle fused. (The right ankle will follow in December.) Suddenly in my 61st year I was using a wheelchair, a motorized scooter and a modern contraption alternatively called a knee walker, knee scooter, knee stroller or leg caddy. The idea is you put your injured leg on a knee rest and push with your other leg just like my grandson does with his little scooter. In fact, four-year old Collin knowingly patted my scooter the first time he saw it and said with passion, “nice scooter, Grandpa.”

My leg surgery has caused “the scales to drop from my eyes.” It is time for journalists to intentionally use the same method I accidentally used to discover that the ADA minimums have left a world that is an obstacle course to navigate. Journalists need to spend a week in wheelchairs and something like a knee scooter to genuinely understand and communicate that we need to reconsider the ADA. Sure, curb cuts, ramps and others ADA commandments have helped, but there is so much more that could be done.

Here are some of the things such an undercover operation would reveal.

The ADA apparently does not require that every door in a new building have an automatic door opener. Many, many doors in public buildings must be opened manually. I am far more nimble in my current condition than a quadriplegic or a paraplegic and I still struggle and twist myself into a pretzel to open many doors. The only other option is to wait for the kindness of strangers–a risky and demeaning proposition.

ADA minimum standard restrooms in public buildings and private restaurants are no treat either. There is often no maneuvering room at all and here’s one I would never have thought about on two legs: if a stall door opens out, the person in a wheelchair is screwed. You can’t close the $%^#$% stall door. Builders, either make sure stall doors open in or put enough spring on them that they bounce back!

And then there are macadam walkways, stone tile floors and rugs, all of which make navigation damn near impossible on one of these knee scooters.

And, don’t forget private homes. I was shocked to discover that my own Scottsdale home has a four-inch “lip” at both the front and back doors. I had honestly never noticed nor appreciated that.

I said above we need to reconsider the ADA. The reason is the minimum standards of the ADA are often being used as a bludgeon. Architects, contractors and building supervisors know the minimum standards and far too many refuse to take one single step beyond the minimums. I have begun to pray there is a special place in hell for anybody involved in construction who ever utters the phrase “well it meets ADA minimum standards.” In that room in hell they would all be forced to live for an eternity from a wheelchair in the buildings they designed and built!

There is an alternative. As a Twitter follower, I am quite sure it was Elaine Clisham, tweeted to me when I complained about the state of things, universal design might be the answer. Universal design is a concept that would make buildings barrier free and usable for everyone.

I certainly understand that all news is personal and my perspective has been dramatically altered by my recent experience. But that’s sort of the point. Journalists live their own lives absorbed by the next societal train wreck. They do not spend enough time studying stories that have slipped off the front page but still affect thousands.

I am convinced genuine journalistic investigation would reveal that the ADA did great things, but it is clearly time for a facelift. Further, such an investigation would inevitably show that “the minimums” are not nearly enough to make public and private spaces navigable for the handicapped. Finally aggressive journalists need to probe “Universal Design” to see if it is a feasible alternative to the “minimalist” approach the experts now seem to employ.

In a recent Los Angeles Times article, one reporter noted, “So the White House was knocked off-stride when Chief of Staff Rahm Emanuel was forced to issue a public apology for using a derogatory word for people with learning disabilities.”

It appears that this reporter, and undoubtedly many who will inevitably cover this story, aren’t aware of the difference between intellectual disabilities and learning disabilities. It might be surprising to many in the media and public to learn that many students with learning disabilities may in fact be twice exceptional — which means, that in addition to having a learning disability, they are also gifted.

The association with the word used by Chief of Staff Rahm Emanuel and learning disabilities is incongruent. An intellectual disability (old medical term “mentally retarded”) is not the same as a learning disability. In fact, the definition of dyslexia provided by the International Dyslexia Association states quite the opposite: “Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and/or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of languages often unexpected in relation to other cognitive abilities…”

In an effort to raise awareness and share resources regarding dyslexia, my daughter and I created the following video:
http://www.youtube.com/watch?v=mHGo-64dXJc

Additional information on learning disabilities can also be found on the National Center for Learning Disabilities LD Basic’s web page: http://www.ncld.org/ld-basics

In recent years, much progress has been made in the ability to recognize and provide appropriate interventions, remediation and/or accommodations for person with learning disabilities. However, the recent commentary by many reporters over Chief of Staff Rahm Emanuel’s poorly chosen words underscores that there is still much work to be done in raising awareness in the media and general public as to what learning disabilities are — and what they are not.

Darla Hatton, the mother of a child with dyslexia, is a presenter on reading and assistive technologies, and a certified reading specialist. Hatton wrote this blog entry for the NCDJ.