There were surgeries – lots of surgeries. But somehow, no matter how serious or complicated the procedure, he always pulled through with flying colors. While there was the physical side to my brother’s challenges, there was also the cognitive side, which remained with him, no matter his physical state. And throughout the numerous trials and tribulations in his short life of 25 years, it was not all roses.
At a birthweight of 9 pounds, 3 ounces, my mother says that Marty was the biggest baby in the Neonatal Intensive Care Unit (NICU). Having spent some time with one of my own children in the NICU, I’m sure she was correct. My mother tried finding the positives in his life no matter Marty’s age. You see, it was critical that we always talked about Marty’s positives either with him or amongst ourselves; in the 1970s, ‘80s and even the ‘90s, there was only limited support, guidance or encouragement available in the community to help my brother.
Depending on which professional he saw or what he was tested for, Marty was mildly to moderately affected by his diagnoses, which, at the time, meant that there were few services for which he qualified and were appropriate, as he simply was not as severely impacted by his diagnoses as others who qualified for more extensive services. My brother felt isolated; while he had a supportive family, in no way was it a peer group. And despite a few well-meaning, kind individuals who tried to learn or spend limited time with him, it was no substitute for what could have been…
Today, the landscape and magnitude of services available to individuals who are differently-abled is much more far-reaching, comprehensive and accessible than 30, 20 or even 10 years ago. At the same time, I am keenly aware that, unfortunately, many families must fight for what they are legally entitled. Nevertheless, there is a much bigger menu of services available today then there have been in the past. Yet, many families do not take full advantage of the services available to them. Why? Every family has its own reasoning and situation that is unique. I certainly cannot and will not speculate as to why this is; this is not my responsibility, nor is it my business. But speaking as a sibling whose brother, if alive, would have loved to have taken advantage of the programs available in our community, it would have been an easy choice to make.
So I ask those who are in a position to have a positive effect in the community: are you doing all you can to advocate for real changes in the community – to delegitimize stigmatization, provide desperately-needed services (educationally, socially, etc.) – so that not even one person is forgotten about or neglected in the community? Our community has been blessed with numerous individuals who are kind, generous and warm – many of whom do their part. But if you are letting other people “do the dirty work,” what are you waiting for? If not now, when? I’m sure that my brother z”l is wondering the same thing.
The author resides in Chicago with his family and has worked as a community professional for nearly 20 years. Currently, he is the Chicago Director of Yachad, an organization that provides opportunities to all differently-abled people across the spectrum of Jewish life. He can be reached at [email protected].
