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I recently stopped into American Girl Place in Chicago. My American Girl dolls are a popular, experiential concept where you choose a doll and then customize her through the purchase of clothes and other accessories that reflect hobbies like cheerleading and taking tea. Absent from the shelves, however, is much in the way of a disabled doll theme. American Girl, which was acquired by Mattel in 1998, says it wants you to “create a doll as unique as you are,” but doesn’t offer many accessories that fully represent the 54 million Americans with disabilities and two million children with special needs. You can purchase a wheelchair accessory ($34), but it looks like one that belongs in a hospital waiting room for injured people — not like the ones used by real kids with disabilities. You can also purchase crutches for temporary injuries, and funky-colored eyeglasses. If a wheelchair is supposed to ... keep reading »
As I sit in a Starbucks watching baristas serve up morning coffee drinks from behind wood-paneled counters, I think about how easy it would be for Maurizio Antoninetti to sue them. Antoninetti, of San Diego, successfully brought a lawsuit against Chipotle Mexican Grill and yesterday the Supreme Court denied Chipotle’s appeal. The four-foot-high counter at Chipotle, the suit claims, prohibits people in wheelchairs from seeing and selecting their food first-hand, which is in violation of the Americans with Disabilities Act. Antoninetti says he is being prevented from “participating in the restaurant experience.” This is a situation people with disabilities know too well, including me. (I’m deaf.) Minutes ago, when the barista at Starbucks asked for my name so she could write it on my cup, I knew I’d never hear my name being called out amid the loud coffee grinders and jazz music. So I did what I always do: ... keep reading »
When babies are born in a hospital, they are routinely tested for conditions such as cystic fibrosis and hearing loss. Yet less than two percent of newborns nationwide are screened for congenital heart defects, or CHDs, which can be deadly if left undetected. According to a new report by Little Hearts, a national organization that offers education and support to families of CHDs, only 1.8 percent of newborn babies are tested for CHDs, the most common birth defect and leading killer of infants and newborns. Nearly 60 percent of babies in the U.S. who are ultimately diagnosed with CHDs were not screened at birth. A simple test The hospitals that do screen for the condition use a pulse-oximetry test, or pulse-ox, to measure oxygen levels in a baby’s blood. A tiny sensor is placed on an infant’s foot, with low oxygen levels indicating a potential CHD within minutes. “Early detection enables us to quickly identify ... keep reading »
It was a different time back in 1982 when my Home Economics teacher suggested I enter the Miss Berkmar High School contest.  My peers were cheerleaders and dance champs; the overachiever in me loved the idea of being recognized for something other than class president.  And the idea that I could do it – that a person in a wheelchair could be in a beauty pageant – was a novel one.  Miss Berkmar was the gateway pageant – I went on to earn several other tiaras before I earned the best title of all: Miss Wheelchair Georgia. Nearly 30 years later, the Ms. Wheelchair America pageant system still lives on, recognizing women for their accomplishment and potential to use the title to advocate for the rights of people with disabilities. The pageant was recently celebrated in a new documentary, “Defining Beauty,” which debuted at the Newport Beach Film Festival in early May. “Defining ... keep reading »
Every now and then the media writes an article about reality shows that blend in people with disabilities. Favorites are American Idol contestant James Durbin, who has both Tourette and Asperger syndromes, and Luke Adams, the first Deaf contestant on The Amazing Race. While it’s great to see differently abled folk thrown into the crazy, shenanigan-lovin’ circus that is reality TV, it’s about time that producers began realizing the potential for PWDs to draw in top ratings all on their own. There’s no finer person to lead this trend than Oprah Winfrey, who just crowned Zach Anner, a comedian who has cerebral palsy, as the winner of his own TV show on the Oprah Winfrey Network.  Anner plans to travel the world in his wheelchair, cracking jokes about inaccessible palaces and how yoga looks a lot like how he puts on pants in the morning. In a cable series on NBC’s Universal Sports, ... keep reading »
Grand openings rarely move me. Sure, they may be festive, even lucrative (read: a retail grand opening with blockbuster sales). But never moving. Until now. Today, the Ronald McDonald House of the Greater Hudson Valley in Valhalla, N.Y., opens its doors for the first time to families whose children are in the hospital due to serious illness or injury. A different, quieter kind of opening. But far more life-changing. Here’s how I know. Our first home When our son, Andrew Busenbark, was born with multiple congenital heart defects a little more than five years ago, he underwent a life-saving procedure at 24 hours old. Open-heart surgery at three days old. And a three-week recovery in the pediatric intensive care unit (PICU). Parents everywhere – with or without a child who has an illness, injury or disability – can imagine how nearly a lifetime of stress crammed itself into those few, short weeks. But I ... keep reading »
I was very slow to see the movie “The King’s Speech.” I had wanted to see it for many months, and am overjoyed with having seen it. It’s a movie I will watch many times — I enjoyed it that much. I also drew many parallels between the sometimes despicable ways that speech therapists and others treat people with stuttering problems, including me. “The King’s Speech” is the story of British King George VI (formerly Prince Albert Frederick Arthur George, Duke of York) and his personal struggle to control his stuttering, or as the King calls it, “stammering.” For Albert (Colin Firth), dealing with stammering is a constant struggle internally, physically, psychologically and socially. Throughout the movie, Firth, who plays the future king, does a wonderful job portraying the hurdles people who stutter face daily. Firth plays Albert’s character so authentically that I almost believed the actor stutters in his personal life. Many ... keep reading »
The AAPD (American Association of People with Disabilities) honored the hit FOX series Glee with its Image Award last week. Glee won for its portrayal of not just one, but three people with disabilities.  There’s the darling Becky (played by actress Lauren Potter), Coach Sue Sylvester’s cheerleader/student assistant as well as Sue’s older sister, Jean (charmingly played by Robin Trocki).  Their performances are solid, the disability storyline is just a subtle current, and I love that one day my now 9-year-old (who has Down syndrome) will be able to see someone like him having a good time doing something they love. I’ve always been on the fence regarding the casting of the Arnie character, a student performer who uses a wheelchair, who is played by non-disabled actor, Kevin McHale.  It’s not that I’m on the fence about Kevin – he’s got talent – it’s the idea that the show missed out ... keep reading »
I used to think that we didn’t need to know hundreds of people with Down syndrome; we just needed a few good friends.  People with whom we shared more than just a diagnosis; people with whom our family could relate and enjoy, and with whom we could talk about more than delays and milestones, therapists and specialists, teachers and aides. We found them, and we cherish them.  And you know what?  It turns out I was wrong, we do need the hundreds of people with Down syndrome, too. Organizations like the National Down Syndrome Society have a mission to create a society where inclusion and acceptance are the norm.  They represent us, and they celebrate us – the hundreds of families (estimated to be more than 400,000 in the U.S. alone) for whom Down syndrome creates a life of unexpected joy. Today is World Down Syndrome Day.  March 21, or 3-21, is ... keep reading »
How often do you get off the subway and find that there is no working elevator or escalator to get you out of the station? How often have you not been able to hear stop announcements on a subway car or a city bus? How often do missing light bulbs in subway stations make it impossible for you to see well enough to feel safe? These are just a few of the reasons that people with disabilities, like it or not, rely on paratransit services rather than conventional public transportation. In the Washington, D.C. area, paratransit services just got more expensive. Starting today, fares for MetroAccess, which is operated by the Washington Area Mass Transit Authority, will more than double. Yesterday’s fares of $3 each way will rise to as much as $7 each way per trip! How WMATA’s board justifies the huge increase in fares is mind-boggling. They point to their ... keep reading »