Everyone is Disabled
Everyone Needs Love and Respect
Changing careers is always difficult, leaving a career of more than 50 years at the age of 71 is beyond crazy but I did it and I am thoroughly certain I’ve made the right decision after working a grand total of three weeks in my new position.
For the last three weeks I have been in training for a position with a day program at an agency that provides services to people with emotional and intellectual issues and I say issues, and not disabilities, because I would have to apply that adjective, disability, to everybody because in one way or another we are all disabled. So I will use the terminology of the agency and refer to the people getting services as “people” and how radical is that.
My job, if I ever learn enough to actually do it, will be to provide support and help the people get stronger in areas that have been determined by professionals and others far smarter and learned than me. But I can boil all the verbiage down to one word, being a non-judgmental, supportive friend, alright, three words, four if you include the hyphenated word. I arrive at the center in the morning and await the arrival of the people who are brought in from area group homes or their family homes and I try to greet each by name if I can remember the name and if I can’t I ask a colleague for the name and am told that it takes everyone weeks if not months to memorize all of the names and I am bowled over when one of the people remembers my name. But I know a few and I walk over to John who appears to be existing in some other place, with eyes that seem to look beyond it all and I say hello and John smiles, extending his hand and I ask how his breakfast was and he says, fine, and I know that he is much more in touch with the world that I might think and that he is terribly grateful that I asked him about his breakfast.
So I work with two or three people a day as we take them in vans to area parks, maybe the Dollar Store, which is one of their most popular haunts, today we bought pumpkins at a roadside stand and watched a NatGeo show on carving Halloween pumpkins, the history of pumpkins and another on weird animals. On the way, we make small talk but I am aware of how tremendously important this talk is and the African American woman in the back seat asks me if we are going to the Dollar Store and I say yes and she says, “Phil, I really like you” and inside I am melting.
There is a method to the madness as going to parks or a roadside stand or a store is a way to show our people that they are entitled to go the same places as the so-called normal people and at the same time, those so-called normal people at the Dollar Store may see our people and maybe realize that they aren’t that different after all and that maybe they deserve to be treated with dignity and understanding. I know that many so-called normal people are frightened and put off by the 55-year-old, short balding man with Down syndrome who has a faraway look in his eyes and has only a flat demeanor and doesn’t seem to know much about anything or the 44-year-old woman who has a tentative gait and looks as if she doesn’t understand much of what is going on or the 30ish man with wild hair who makes only grunting sounds and continually gestures wildly and apparently for no reason.
But I have learned so far that the 55-year-old man with Down syndrome is indeed very engaged and very aware especially when he is asked if he would like to go to the Dollar Store and he breaks into a wide smile and the 44-year-old woman with the tentative gait is so obviously happy to be going somewhere and to be treated like the adult who she is and I approach her and ask what she bought at the Dollar Store and she shows me the Animal Crackers she purchased and offers me a heartfelt fist bump. And the 30ish man who makes grunting sounds may not be able to communicate like so-called normal people but he can make the point clearly that he wants the larger pumpkin and not the white pumpkin and how proud and what a big deal it is to have his own pumpkin.
It is a profound experience as I look at two men with Down syndrome, including one older and one younger and the older man has no need to use his stature to gain power. There is no bias in this room only an unspoken understanding that they are all the same, they have the same needs and feelings and they are a community. There is a woman, Jane, I guess she is in her 60s and she looks sad until Jason, who smiles easily but says very little and also has problems walking, walks over to Jane and gives her the most touching embrace and the two people smile with thanks to each other. The people I see have very complicated issues and their fates are unknown like Bruce, a good looking man probably in his 40s who cannot stand straight, his arms permanently crooked as he darts his head around, seeming to have no clue about his presence, until a worker calls to Bruce and asks him to take a seat and he does exactly that.
What is perfectly clear is that every one of the people want one thing, above all, to be recognized as an individual who wants friendship and warmth and connections, alright three things, and not to be seen as nothing more than a person with a disability, a person to be pitied, someone somehow inferior and unequal to the so-called normal ones. They do not want pity, that much I do know. Actually, that’s about all I want also, to be loved, have connections and not be considered a person whose differences leave him exiled in a lonely world.
I can’t help but wonder with great sadness how the older people were treated in their younger years, before there were organizations to help them find a meaningful life. No doubt many were kept in darkened basements or went out sparingly on escorted walks while children on bicycles called out taunts or worse and sped away. Or many could not be managed by their parents and were very likely placed in large, overcrowded unhealthy and unsafe institutions where physical restraints or injections of Thorazine were the answers to most any misbehavior and where the people were looked at as hopeless flotsam with the only hope that they will die sooner than later to put them out of their miseries.
I have to say that 50 years in journalism is becoming a distant memory and that I feel like I’m doing something important, maybe for the first time in a long time.