Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Wednesday, October 26, 2016
Why the TV Show "Speechless" is Important to Me and Should Be for Everyone -- Disabled or Not
WHAT I'M WATCHING: "SPEECHLESS" [ABC TV NETWORK]
People With Disabilities (PWDs) are the last marginalized people to gain respect. We have made so many inroads in the developed, industrialized world with race, religion and sexual orientation and identification. Many people and legislators still wish to lock us up in institutions and keep us out of sight . Although there has been great progress in enabling PWDs to live in the community, we still have a long way to go. If I didn't navigate the system the way I did, and push for transition to a self-directed care model [Concepts of Independence in my case], I would otherwise be living in an institution or getting care through an agency. An agency controls everything -- when and where you can go-- and if you can go -- outside the home, and even whom they send to care for you [in some cases, with very little input from PWD or family]
"Speechless" is so important to me because it not only features an actor who really has a disability and shows that "speechless" is not synonymous with "infantile". The show also deals with the concept of "inclusion". When I became disabled in January, 2004, I was shut out of activities by many able-bodied people, sometimes by inaccessibility of venues or lack of accessible transportation, but often by well-meaning "friends" who thought I would be uncomfortable around "normal" people. Sometimes I am invited, only to be invisible-- left out of the conversation or even ignored or stuck in a corner by myself. This show should be watched by everyone, especially by misguided people who have told me "Maybe there's a group or club you can join that's more for people 'like you' " [this was actually said to me more than once]. Get out of your comfort zone -- watch it; it's actually funny. I give you permission to laugh.
"Speechless" features a family with an adolescent with Cerebral Palsy. There's a mouthy mom-- Maya Dimeo, who is a flawless advocate and played brilliantly by Minnie Driver. She is the perfect advocate for JJ, even pointing out when well-meaning gestures are insulting. In the first episode, she asks for a ramp so JJ can get into his school and she goes on a rant when she is led to a ramp which also doubles as a trash conduit. I can relate to this, since often when I ask for a ramp, I am led to a rear door alongside trash and service entrances. In my own residential building, I haven't seen my lobby in at least 10 years; I have to enter and exit through the basement. Especially in older buildings that have been retrofitted, we are segregated.
I love when my caregivers and friends speak up for me in the face of injustice. Despite my inability to express myself clearly at the moment of impact, I have learned the fine art of patience and diplomacy in protesting after-the-fact. I write letters and emails, and make relay calls. I used to shoot off my mouth at the moment of the injustice. That proved to be ineffective at times and even counter-productive, since tempers are often high at that minute and I tended to say harsh things I sometimes later regretted. Also, sometimes the person you yell at, isn't the one who can make a change and sometimes is a lower-level worker who isn't very educated in discussing protests in a civil way, especially in the middle of his workday. And even more likely, as in the recent case of a friend arguing with a paratransit driver, you find yourself in debate with a recent immigrant whose English language skills are not the best and/or can't or won't take direction from a woman.
But in "Speechless", Minnie Driver is a funny angry person and shows how we can laugh at a life that can also be referred to as a tragedy.
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