“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” – Stephen Hawking
HOW IT BEGAN…
If you were fortunate enough to be the last in the birth order of children, you reap the benefits of having older siblings. Being a boy and they were girls, it was more of a mothering relationship than suffering through the predictable thumpings of older brothers. Instead, the “junior mothers” tended to watch over, feed you when required and if there was a disagreement, it was usually between “the girls.” If something bad involved you, it was elevated to “I’m telling” [your parents] once they returned.
I quickly learned the power of observation. And one thing was the diversity of friends that would visit our house. One was Greg, who lived in our neighborhood of Sherwood Manor, a couple of streets over. And Greg, being rather tall, was easy to spot as he crossed between houses and came over to our place for a visit. With a certain lope in his gait. And, always, a huge smile on his face.
Greg was mentally retarded [as known back then in the 1960’s]. Somewhere along the line, “mentally retarded” got shortened into insults of “retarded” or even the abbreviated “’tard.” Efficient insults, I suppose. Until the morphing by political correctness, so today we refer to it as an “intellectual disability.”
Greg [and his classmates] worked in a sheltered workshop. Today we call them “adult daycare centers.” Same place, really. Just more politically correct. Everything needs to be politically correct, these days. But more importantly — kinder.
Greg would come over to visit with my sisters, who were in the same graduating class as Greg. 1965 and 1967, respectively. They spent time cheerleading in the yard, or we’d put a record on the stereo and pantomime. “West Side Story” was a favorite. Greg did “Something’s Coming” while I was assigned “Officer Krupke.” My sisters handled the rest of the production.
By having a “Greg” [we also had a “Dean” – who often appeared at our house on horseback], I grew up figuring that everybody had a Greg or a Dean in their lives. They were a part of our circle. Similarly, we had a brilliant [Ph.D from Georgetown University in Russian Political History] and gay uncle. Additionally, in our work in theater and the performing arts, you get exposed to a lot of great [and sometimes gay] talent. Finally, one of my closest [and longest duration, 60 years] friends is Teddy, who is black [as were most of my roommates over time]. So, when the outside of your circle becomes part of the norm – your circle gets widened. And enriched.
OUT OF THE SHADOWS….
The U.S. ID population is estimated at approximately 1% of the population, or roughly 3.5 million people. [WebMD.com]. So, while [to many] they are unknown, the numbers are clearly significant.
Once upon a time, people who were “different” were banned to attics. Or sent away – to live with relatives, or in an institution. It was an embarrassing situation that families wanted to distance themselves from.
With age, and as their parents or caretakers die, the group will still need care. One of the answers might be more self-care, and enable caregiver attention to be spread more widely across the ID community. More frequently, you’ll hear about ID folks living independently, holding jobs, getting married, even rearing families. Mainstreaming in action.
Gerber just announced their Baby of the Year, a Down-Syndrome baby named Lucas. And television series are casting characters, sometimes entire ensembles of ID actors. One of the most popular and award-winning series was ABC’s “Life Goes On” [from the 1990’s] and more recently, A&E’s “Born this Way.” Art imitates life.
Communities seem to be widening their circles as well. ID students used to be relegated to the Special Education wing, a set of separate classrooms. There were even separate busses – sometimes derisively referred to as the “short busses” [because they were], needing less capacity and maintenance to service a smaller community. But all this also reinforces the notion of separate and “different.”
What a relief those days seem to be over. Mainstreaming into “regular” classes, with assistance from aides where necessary, is becoming the new norm. Of course, there will always be more profound cases, where that approach isn’t practical. But most of the time, it appears to work and is encouraging.
What creates a person with an ID? There seem to be a variety of causes, most prevalent is DNA alteration. A slight modification – a gene, or cell that gets mutated. Sometimes another form of birth defect, or complication during delivery. The topic is rather complex and beyond the scope of this article.
Suffice it to say, there is creation of a class, unknown, unwanted or ignored by many. It’s just “uncomfortable” – as we are quick to say these days. This is exacerbated by a world [especially during school years] where everybody tries so painfully hard just to “fit in.”
I learned, from my sisters, about activism within the ID community – as teachers, aides and volunteers. So, like most dutiful last birth order children, I followed their lead. And loved it. Mostly, through adult daycare center [though I still want to call them “sheltered workshops”] volunteering.
My only limitation was sometimes with the Administration. Predictably, due to over-protection [understandably – it’s an ugly world out there with a lot of weird people waiting to take advantage of ANY of us, especially the ID world]. Also through exclusivity. There sometimes appeared to be an “Administration vs Volunteer” dynamic going on. Sort of an arrogant “we know best” thing. Fortunately, I never looked to the Administration for anything, other than the opportunity to serve. My payment came from the clients.
I even had a chance to serve on an Advisory Board, where maybe some of my business and management experience, honed in Corporate America, got put to a “higher good.”
ALL YOU NEED IS LOVE
One thing you immediately feel, in the ID community is the amount of love. And you can’t help but love them right back. There is so much hate, haters and division in the world, it’s nice to have a break. Even if it’s only one day each week. These are all fun, funny souls. And, without a doubt, I received back more love than I was ever capable of delivering.
You also can’t help but notice, along with the love, clients having a real interest in you as a human being. What’s going on in your life. Your interests. What you’re up to. FAR more than the general population, with their noses pressed against cell phone screens.
Something I learned was: there doesn’t seem to be a “place” [an agency, organization, ombudsman, etc.] that looks out for the ID community. Case in point: the use of the word “duh” in advertising. It sets me off so badly, words [almost] fail me. And that rarely happens.
“Duh” is an expression used to convey “how stupid of me,” but in a supposedly hip way. The roots of the expression are from the 1950’s, in the ID community, denoting confusion. Most recently, Steinger, Iscoe and Greene, a personal injury law firm in South Florida and General Mills, in their Go-gurt campaign. I called the top brass at both organizations – some of my friends did too. We begged, we threatened, but above all let them know it was UNACCEPTABLE.
Eventually the advertising was modified. I’d like to think it was because of us, but don’t know for sure. But stand up for what you believe. If there’s nobody doing it, do it yourself. You might actually get somewhere. Without a doubt, you will feel better about yourself. And for those unable to stand up for themselves.
Finally: tolerance. Remember tolerance? And it’s cousin, acceptance? Better to understand those we might not know. By widening our circle, something foreign becomes “normal.” I’m a better man because of it.
And I still remember the lyrics to “Officer Krupke.”