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, my back gave out and I would have to wait for someone to help reposition me. I never went out in the winter except to work, and the short walk from my car to front door of my apartment was fraught with anxiety.
Then, in my early 30s, while driving on a gorgeous sunny day, I found a hidden garden near my home. There were flowers, trees, rolling hills, and the smell of a cool breeze. But the garden’s grounds were uneven, and the fear of falling grew with every step. I could only survey the beauty from afar for a few minutes, then turned back to my car. Once home, I sat on my balcony as the sun set, called an old friend, and relayed what had happened. “Don’t take this the wrong way Ed,” he said, “but wouldn’t going into a wheelchair be liber –”. He had not finished saying that word when a wave of clarity – that ‘A-ha!’ moment – occurred. In a flash, I understood that going into a chair would not be confining; it would be liberating. It had been my own stubbornness that had confined me.
The first weekend after I received my chair was warm and sunny. On Saturday, I drove into New York City and went to Central Park. I started at Columbus Circle and took the next few hours traversing the entire length of the park, up to 110th Street and back down, hitting every crevice I could. I then rolled up to my favorite museum, the Metropolitan Museum of Art. I had not been there for years because my legs and back could not take the standing or walking that was required. I went directly to the wing filled with impressionist art, my favorite spot in the City. I sat and stared at the paintings for two hours, immersed in their beauty and colors. I rolled up to and away from certain paintings over and over, smiling and staring straight ahead as I watched each turn from a beautiful painting when far away into just blotches of dots as I drew close and then morph into the beautiful painting as I backed away again.
The next day I went to the place I love the most on Earth, where I feel ‘at home,’ my old summer camp in the Poconos (which was not yet open for the season). Because my mom helped run the camp for decades and I attended or was staff there for 15 years, the caretaker knew me well and let me have free run of the place. I frolicked alone over acres and acres of paved and unpaved trails, green grass, and sports fields. I sat by the lake, listening to the birds, chipmunks, and rustling of the leaves in the trees. I breathed deeply and just relaxed. It was the first weekend in a long time that I felt truly in the moment, at peace with who and where I was, without anxiety or fear. That was the weekend I became fully comfortable not only with myself, but with my disability. I realized it was not something to always try to ‘overcome.’ It was an integral part of me.
“You are one of us”
Well before I recognized the unique influence my disability had on developing my psyche and skills, my career path was clear. I entered law school knowing that I wanted to spend my life defending the rights of people who were viewed as different, and ensure every person is treated fairly and justly.
After law school, I was hired by the public advocate’s office, representing mental health patients who were committed to psychiatric hospitals, having been deemed mentally ill and dangerous. It was then that I discovered an unexpected benefit from having my disability. Although the job was to represent the patients, those clients often did not trust us, viewing us cogs in the system that was keeping them in a hospital against their will. But given my obvious disability, the patients did not see me that way. As one patient said: “Do you know why we trust you? You are one of us.” They saw me as a fellow outsider. That perhaps allowed them to open up to me and to help me help them.
After a few years in that unit, I was selected by the public advocate’s office to represent sex offenders in Megan’s Law community notification hearings. The head of the unit and I ended up bringing numerous constitutional challenges to the law. With little experience in such complex work, we were proceeding by the seat of our pants. Having to solve problems or overcome roadblocks on the fly had become second nature for me. My superiors became comfortable giving me more and more responsibilities, and in just a few years I gained invaluable experience, arguing cases before the New Jersey Supreme Court and United States Court of Appeals.
Did FSHD make me who I am?
After five years in that position, I was hired for my dream job: Legal Director of the American Civil Liberties Union of New Jersey. That position fulfilled my passion to help the underdogs and the voiceless. But it also was the position that, more than any other, best utilized not only the skills I learned in law school but the skills I developed from living my particular life.
Working on constitutional law issues requires the ability to approach things logically and creatively at the same time. The work of the ACLU is unique. It is not to merely see that existing precedent is enforced, but to advance the law. One must step back, put aside status quo thinking, and find an approach that is distinctive and new but that can be so strongly defended that the courts will accept it. Just as in my tennis matches, it requires crafting new spins (on prior court decisions) and finding the best angles to win your points.
I was conditioned to notice every crack or imbalance that could upend a case, to see every potential roadblock, and to know what logical order one should take in crafting the best course of action. My greatest talent was in editing others’ work—to make a bad brief good and a good brief great–and preparing others for oral argument. In the last two decades of my legal career, we were able to alter the status quo to one that was at least slightly more fair and just.
What I did not appreciate until after I retired was that my particular talents were perhaps unique. It was only upon hearing my colleagues speak about me at the ACLU awards ceremony that I realized that skills that came so hard to other lawyers had simply become second nature to me.
So would my life have followed a similar path if not for my disability? Would I have developed such a strong sense of empathy? Would I have wanted to focus my career on advocating for those who were different, for the voiceless, for the underdogs? Would I have been as creative? Would I have been able to see the big picture, to find unique approaches when others might not? In short, would I be close to the same person I have been? Luckily, I’ve been happy with who I am and what I have accomplished. So it is perfectly OK that we will never know.