A colleague of mine sent me a link to this video and I thought it would be of interest. Athlete, actor and activist Amiee Mullins gave a talk to a TED conference in February 2009 about how she has redefined disability through her prosthetic legs. Not only does she have Cheetah prosthetics that she used for her Paralympic bid in track and field in 1996, but she has several fashion prosthetics that are truly pieces of art.
National Center for Disability Journalism gives me a chance to do some things differently
April 13, 2011, 9:34 p.m.
by Tim McGuire, McGuire on Media
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.
Making the Web Accessible
Dec. 16, 2010, 6:05 a.m.
Suzanne Robitaille and Michael Jaeger have released a new white paper in response to the the recently passed Twenty-first Century Communications and Video Accessibility Act which creates standards for online video programming.
The white paper describes what is happening currently in online programming, what the new law means for current and future content and the business case for making online programming more accessible.
For more information and to download the white paper go to: http://abledbody.com/online-video-captions/.
New Tip Sheet Added on Web Accessibility
Dec. 16, 2010, 6 a.m.
The basics of what you need to know in designing a accessible website. These guidelines are crucial to making your website accessible to those with decreased vision, hearing and motor skills.
The tip sheet can be found at: http://ncdj.org/tip-sheets-for-reporters/
Sizing Up Disability In The Media
Oct. 25, 2010, 11:07 p.m.
After disabled model Tanja Kiewitz got the courage to pose with her missing limb to recreate Eva Herzigova’s infamous Wonderbra ad, she thanked her friends and “a couple of glasses of wine,” according to Huffington Post. You might remember Herzigova: A voluptuous brunette wearing nothing but a black brassiere dares readers with the caption: “Look me in the eyes … I said the eyes.” Likewise, readers can’t keep their eyes off Kiewitz’s arm, which ends at the elbow — but that’s O.K. It’s for a good cause, as she’s working to raise money for Belgian disability awareness group CAP48.
In what the disability community has been saying all along, Kiewitz told GlobalPost in an interview that “it would be good if handicapped people started to be used to advertise other things.” (Handicapped is a term commonly used in Europe). “Why shouldn’t somebody with a disability be a model? It would make a change from those models who all look alike. Why don’t we have more people in wheelchairs speaking on TV, they can speak as well as anybody else,” she says.
Lots of opportunities come to mind, from models to actors to politicians. Today, Jonathan Phang, the host of Britain’s Missing Top Model, began backing a campaign calling for the fashion industry to use disabled models on the catwalk and in ad campaigns. And earlier this year Debenhams, a famous U.K. department store, became the first retailer of its kind to use disabled models in campaign photography. Debenhams has just announced they are supporting the Disabled & Sexy fashion show, which will be held October 25 in London’s Notting Hill.
“We need to look beyond stereotypes. Not only to encourage the fashion world to change their thinking, but to help raise a deeper understanding about the prejudices young, beautiful, disabled women have to overcome every day,” Chang says.
The next industry that should pick up cues Is Hollywood. Fox’s Glee has cast a singing and dancing wheelchair user who is not disabled. However, there are two actors with Down’s syndrome on the show. Out of a total of 587 characters on television shows this season, only six roles have disabilities and only one role is played by a disabled actor, according to Hollywood Reporter. That actor is Robert David Hall, a double leg amputee, who plays a coroner on CSI: Crime Scene Investigation.
Hollywood says it’s not always easy to find talented disabled people to fill their cast and crew. ABC, for instance, recently put out a Facebook casting call for a deaf actress and two male deaf actors for a new family series.
It’s Hollywood’s job to make art reflect life, but also for life to reflect art. Forrest Gump, I am Sam and Rain Man were all superb movies, played with aplomb by able-bodied actors. This is likely more a reflection of the business model of Hollywood; not wanting to risk a typically overblown movie budget on an unknown actor who has a disability.
In the consumer space, some companies have recognized the selling opportunity and are reworking their ads to include people with disabilities. Props to Milk-Bone for including a wheelchair user in a recent T.V. commercial, and for supporting service dogs for the disabled. Kudos, too, to Babies “R” Us, who is working with Autism Speaks on a collection of photographs titled “Faces of Autism” that are appearing on signs in stores and on a section of the Toys “R” Us Website.
For many years, ads and catalogs for Toys “R” Us have included children who are physically disabled. Consumers with physical disabilities, younger and older, have appeared in campaigns for advertisers like Cingular Wireless, Levi Strauss, Pepsi, McDonald’s and Target.
Some artists are taking matters into their own hands. In May, photographer Holly Norris shot a spoof of the hip-and-skinny, teenaged American Apparel print ads with her friend Jes Sachse. Calling it American Able, the ads featured Jes, who has a rare genetic disorder called Freeman-Sheldon syndrome, in a series of poses that have been called “a searing satire of fashion photography.”
Last year, American Airlines ran a campaign that honored the best local TV commercial featuring positive portrayals of the disabled. The winning spot — the Texas Lion’s Club — won free air time during the airline’s in-flight entertainment programming. After the dismissal of a disabled passenger by US Air this week, more airlines might want to look into this niche.
There are nearly 1 billion people globally with disabilities. Like or not, the message is getting clearer: Leave out the disabled and you’ll leave money, and customers, on the table.
- By Suzanne Robitaille
Journalistic amnesia is a real negative when it comes to disability and the ADA
Sept. 8, 2010, 4:28 p.m.
by Tim McGuire, McGuire on Media
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.
New Harris Poll on Disability Released
July 23, 2010, 5 a.m.
by Jake Geller
In reaction to a new poll released today, a disability advocate calls for more representation of people with disabilities in the media to close the gap between those with disabilities and those without. “One out of five people in America has a disability of some sort so we should see one out of five people portrayed with his disability,” said Carol Glazer, president of the National Organization on Disability.
In honor of the 20th anniversary of the Americans with Disabilities Act, The Kessler Foundation and National Organization on Disability released the results of the 2010 Survey of Americans with Disabilities. The poll was conducted by Harris Interactive and measured the gaps between those with and without disabilities. These differences were in the areas of employment, income, education, health care, transportation, Internet access and socializing.
Although there were significant gaps in employment, health care access and transportation; the survey found the gap narrowed or eliminated in education and political participation respectively. “Where political participation goes, so does legislation change follow,” Glazer said.
Detailed results of the survey and presentations are available at www.2010disabilitysurvey.org.
Wall Street Journal Says Disabled Entrepreneurship Is on Rise
July 21, 2010, 11:39 a.m.
Thanks to the recession and higher unemployment rates, more people with disabilities are trying to go out on their own, and a few good programs are providing them with much-needed support.
Today, the Wall Street Journal published the article, For Disabled, a Job Hunt Alternative, leading with the story of New Mexico’s David Shunkey, an autistic man who runs a dog-treat business with an $850 state grant. The story does a great job talking about the opportunities as well as the hurdles that face disabled entrepreneurs. While loans are available, they’re harder to get. And in Mr. Shunkey’s case, his difficulty with communicating and running a business has potentially hurt his sales.
A key program that WSJ mentioned is one I’ve written about in the past on my website, abledbody.com, is the Entrepreneur Boot Camp for Veterans. This excellent, week-long workshop is designed to give veterans with disabilities an MBA-style crash course in being an business owner. Six schools are participating, including founder Syracuse University: Here’s how to apply.
Another program that didn’t receive mention — perhaps it was too new to be considered — is the U.S. Business Leadership Network’s Disability Supplier Diversity Program. The program offers businesses that are 51% owned by an individual with a disability, including service disabled veterans, an opportunity to obtain certified disability-owned business status and get access to supplier networks in major corporations and federal agencies. It’s the disability version of being a women- or minority-owned business. My company, abledbody, successfully obtained certified disability-owned status on April 30, and I’m on of 16 other small businesses that hope use this certification to do business with private-sector companies including Ernst & Young, IBM and Walgreen’s.
In fact, many people with disabilities who start businesses go to great lengths to ensure that they’re using their strengths, not their disability, to make an imprint. (Abledbody offers writing and communications services.) Other companies in the program sell products and services that cater to the disability market — such as Braille signage or ADA consulting — and for these enterprises, business can be a windfall. Let’s hope another article shows up in mainstream media that highlights these success stories, too.
- Suzanne Robitaille
Two New Tip Sheet Added
July 19, 2010, 2:04 p.m.
With the 20th anniversary of the Americans with Disabilities Act, we just posted two tip sheets by Jennifer LaFleur, NCDJ advisory board member and Director of Computer-Assisted Reporting for ProPublica.
The first tip sheet gives a good overview of the ADA and other federal disability laws. It includes a survey she created for her investigative story on disability access in the St. Louis area while at the Post-Dispatch.
The second tip sheet is a good primer on U.S. Census Bureau disability statistics. It includes information on the 2000 Census, work disabilities and other Census Bureau data. The tip sheet also has other statistical resources from the federal government and private organizations.
The tip sheets can be found at: http://ncdj.org/tip-sheets-for-reporters/
How Journalists Can Improve Coverage of Autism
March 18, 2010, 9:42 a.m.
Dr. Lynn Kern Koegel, director of Autism Services in the UCSB Autism Research Center and co-author of a new book on about autism, was a guest on Morning Media Menu this week.
On the show, she discussed how journalists can better cover autism –encouraging the media to focus on positive stories about coping with autism, rather than negative controversies.
Very interesting podcast. Check it out here.
