by Ed Barocas, Montclair, New Jersey
In spring of 2019, I received two awards for my legal work, the New Jersey Law Journal’s Attorney of the Year Award, and the American Civil Liberties Union’s Roger Baldwin Award for a lifetime of defending civil liberties. The ceremonies were beautiful but bittersweet. I had announced my retirement months earlier as the exhaustion, discomfort, and worsening deterioration of my muscles caused by FSHD as well as my related digestive issues had simply become too great.
The ACLU event essentially served as my retirement party. During my career I never felt completely comfortable with or even deserving of high levels of praise. But that night colleagues from my 25-year career lauded me. I felt like Jimmy Stewart in “It’s a Wonderful Life” being given the gift of realizing that your life has had meaning and a positive impact on others.
Some people commented that they were all the more impressed because I accomplished what I did “despite my disability.” I always recoil a bit when I hear that phrase. Clearly, my disability created numerous obstacles for me. But living with FSH muscular dystrophy helped shape who I am. I wondered: Would I have become the same person – and would I have been as successful in my career – were it not for my disability?
As a child, I knew there was something different about me. There were not many noticeable physical symptoms of FSHD except that I shared the same facial features and inability to move my upper lip with a number of family members. I always had a close family, a strong personality, and many close friends, so knowing I was somehow different did not devolve into feeling like an outcast. The understanding of being different was instead directed outward, as empathy for others who were different from ‘the norm.’
Because I had the security of family and friends at a young age, I felt empowered to speak out for other ‘outsider-the-boxers’ who were bullied or excluded and were afraid or unable to speak up for themselves. From grade school and beyond, I reveled in taking up the cause of the underdogs. I never felt such a sense of strength as when I would stand up for someone who was being wronged, especially when I succeeded in setting things right.
That sense of strength and control was quite the opposite from my physical being. I was always one of the slowest and weakest boys. During gym class, others might joke about it, not recognizing yet that it was due to a disability. (And I didn’t fully understand it either, nor was I comfortable talking about it until my early teens.) But I had excellent eye-hand coordination, so I could hold my own when it came to certain sports, especially tennis. By the time I turned 12, my muscular dystrophy started to really hit my arms and legs, and I continued to get slower and weaker. In order to win on the tennis court, I had to learn to adapt. I had to engage in what my friends call ‘Eddie-mechanics.’
Putting my spin on things
Eddie-mechanics applied to almost everything physical (and, as it turned out, beyond the physical). I often could not do even the most mundane of tasks the normal way. I had to learn to step back, look at the big picture, consider a new approach, and find my own way. When it came to tennis, it meant not only crafting a good serve without lifting my arm over my head, but also using different spins and angles instead of power or speed, finding new tactics and making it a mental game rather than a physical one. I would need to quickly identify the flaws in my opponent’s game and figure out how to exploit them. I had to improvise on the fly if I wanted to win. And I always wanted to win, to show that nothing could stop me. I lost some but won more than my fair share of games, leaving my opponents angry or confused as to how they lost to me.
My need to prove that ‘nothing could stop me’ was, however, at times counterproductive and nothing more than stubborn pride. Indeed, up until my early 30s, I was not completely comfortable with having FSHD. I only saw how it impacted me negatively and still viewed any success as ‘overcoming’ my disability. And my drive to do so could blind me. Especially when it came to going into a wheelchair. By 30, I walked with quite a funky limp, my back was arched, and I relied on a walking stick. I could not stand for more than ten minutes. I had trouble getting up from a seated position. A few times in a year,