Ed Barocas was relentless

His memoir reveals the late New Jersey civil rights lawyer’s determination to ensure that a disability never stood in the way of achieving success.

By James J. Devine

Ed Barocas was never merely “inspirational.” He was, more precisely, a formidable irritant—an institutionalized pain in the government’s neck.

The distinction matters because the customary language of disability tends to turn complicated human beings into parables. Obituaries smooth the edges. They package a man who spent decades making powerful institutions uncomfortable into a tidy lesson about courage and “overcoming obstacles.”

But Barocas rejected that interpretation of his own life. He did not overcome his disability on the way to becoming a formidable civil liberties lawyer. He came to believe that living with it helped make him one.

“I always recoil a bit” at the suggestion that he succeeded “despite my disability,” Barocas wrote in a 2020 essay for the FSHD Society.

That recoil may be the best place to begin understanding him.

Barocas died on Sept. 11, 2026—25 years to the day after he drove to the ACLU-NJ office and watched the world he had sworn to protect pivot on its axis.

That coincidence is the kind of thing a memoirist might have crafted deliberately, except Barocas didn’t need to craft it. He lived it. He began his tenure as legal director in May 2001, four months before the towers fell, and retired in 2018, after spending much of the intervening 17 years confronting the expansion of government power that followed.

But the roots of that career went much deeper than Sept. 11.

They went back to childhood, to being the boy who knew he was different.

Barocas was born with facioscapulohumeral muscular dystrophy, or FSHD, a progressive disease that weakened his muscles. He was slower and physically weaker than other boys. As the disease progressed, ordinary movements became calculations. By 12, he wrote, the deterioration in his arms and legs was becoming pronounced.

Yet something else was happening.

His awareness of being different did not turn inward. It became identification with other people who were different, excluded or bullied. Barocas wrote that he “reveled in taking up the cause of the underdogs.”

That instinct would eventually become a career.

But first it became a method.

His friends called it “Eddie-mechanics.”

Barocas loved tennis, but as his muscles weakened, he could no longer play the conventional game. Power and speed were increasingly unavailable to him. So he adapted. He learned to serve without raising his arm over his head. He used spin instead of force, angles instead of speed. He studied opponents for weaknesses. He improvised.

“I had to learn to step back, look at the big picture, consider a new approach, and find my own way,” he wrote.

That sentence could serve as a description of constitutional litigation.

If you cannot overpower the opponent, find the angle. If the conventional approach is closed, invent another one. If precedent appears to block the road, look more closely at the precedent. Find the crack. Change the spin. Make the other side play a game it did not expect.

Eddie-mechanics became Ed Barocas’ jurisprudence.

“Ed Barocas was a dear friend, incredible colleague and mentor, and champion for justice. He dedicated his life and profession to protecting civil liberties, and his passion had a profound impact that resonated beyond New Jersey,” said Amol Sinha, executive director of the ACLU of New Jersey. “From challenging secret detention and surveillance practices post-9/11, to petitioning the DOJ to investigate the Newark Police Department, which led to a transformative consent decree, Ed played a leading role in some of the most monumental civil rights victories of our time.”

He built the ACLU-NJ’s legal department from a two-person operation dependent on pro bono assistance into a full-time staff of eight that became the second-most frequent litigant before the New Jersey Supreme Court—second only to the government itself.

That statistic matters.

It means the government of New Jersey, in its own highest court, repeatedly had to answer to Barocas. He made himself one of the state’s most persistent institutional adversaries.

The case list reads like an inventory of the places where government power becomes dangerous: post-9/11 secret detentions, secret deportation hearings, racial profiling on the New Jersey Turnpike, police misconduct, government secrecy and surveillance.

He challenged the Motor Vehicle Commission over REAL ID requirements. He fought municipalities that charged people fees for exercising their right to speak. He battled for public access to police video. The ACLU-NJ petitioned the Justice Department over abuses in the Newark Police Department, helping set in motion federal intervention and a consent decree intended to transform policing in New Jersey’s largest city.

“As the legal director of the ACLU-NJ, Ed helped build one of the most formidable litigation departments in the state,” said Sinha. “His legacy will endure through the scores of lawyers he has mentored and inspired, and the countless lives he has touched.”

None of this was polite.

All of it was necessary.

And behind those cases was the same mental habit a weakening body had forced Barocas to develop years earlier: Do not assume that because something has always been done one way, it must continue to be done that way.

Barocas eventually recognized the connection himself. Constitutional law, he wrote, requires lawyers to “put aside status quo thinking” and find approaches capable of advancing the law.

The tennis player was still there.

He was still looking for spin.

Still studying angles.

Still searching for the weakness on the other side of the net.

His disability gave him something else that no law school could teach.

After graduating from law school, Barocas worked for the New Jersey Public Advocate representing psychiatric patients who had been involuntarily committed. Such clients had good reason to distrust lawyers. Lawyers were part of the system, and the system was holding them against their will.

Barocas was different.

One patient explained why.

“You are one of us.”

The sentence stayed with him.

His wheelchair, weakened muscles, and visibly different body communicated something before Barocas said a word: He, too, knew something about living outside the boundaries society defines as normal.

The outsider could represent outsiders because they recognized him as one of their own.

That experience complicates the conventional narrative about disability. The usual story demands an obstacle and a hero who conquers it. Barocas eventually came to understand that his life was more interesting than that. FSHD imposed genuine losses, frustrations, and physical limits, but it also cultivated empathy, improvisation, patience, strategic thinking, and an instinctive skepticism toward systems designed around somebody else’s definition of normal.

The transformation in his understanding did not come easily.

For years, Barocas resisted using a wheelchair. He could barely stand for 10 minutes. His back was arched. He relied on a walking stick. Winter excursions became ordeals. Walking from his car to his apartment produced anxiety. Sometimes his back gave out, and he had to wait for someone to reposition him.

Still, he resisted.

He later called it “stubborn pride.”

Then, one beautiful day, he discovered a garden near his home. There were flowers, trees, rolling hills, and a cool breeze, but the uneven ground made walking dangerous. Fear drove him back to his car.

Later, describing the experience to a friend, Barocas heard the beginning of a question:

“Wouldn’t going into a wheelchair be liber—”

The friend never needed to finish the word.

Barocas understood.

The wheelchair he had imagined as surrender was freedom.

When he finally got one, he attacked the world with it.

He rolled through Central Park from Columbus Circle toward 110th Street and back, exploring places that had become inaccessible to him on foot. He returned to the Metropolitan Museum of Art, which he had avoided because his legs and back could no longer tolerate the walking and standing. The following day, he roamed his beloved childhood summer camp in the Poconos, traveling across paths, grass and fields and sitting beside the lake listening to birds and leaves.

Something fundamental changed.

His disability, he realized, was “an integral part of me.”

That insight is more demanding than the usual inspirational story because it denies the audience its preferred moral. There is no triumphant separation of Ed Barocas from muscular dystrophy, no victorious moment when the disease is left behind, and the “real” man emerges.

The disability was part of the real man.

It helped produce him.

It helped create Eddie-mechanics.

And Eddie-mechanics followed him everywhere.

There is an almost perfect physical metaphor for Barocas’ career in the story of his appearances before the New Jersey Supreme Court. The courtroom podium did not properly accommodate his wheelchair, so Barocas had to position himself awkwardly, sitting sideways as he argued before the state’s highest court.

Chief Justice Stuart Rabner noticed.

Months later, the court had changed the podium.

It seems like a small thing. It is not.

A man enters an institution. The institution was not designed with someone like him in mind. He nevertheless insists upon entering. His presence exposes the flaw. Eventually, the institution must change.

That was Ed Barocas’ career compressed into a single image.

He showed up.

The system was unprepared.

He made the system adjust.

Sometimes that system was a courtroom podium. Sometimes it was a psychiatric hospital. Sometimes it was a police department. Sometimes it was the government of New Jersey.

The mechanics were remarkably similar.

Barocas also fronted a comedy band. He recorded parodies with members of well-known rock bands, and one of Eminem’s managers produced a music video for him. Memorial pieces tend to treat details like these as evidence that the serious lawyer also had a lighter side.

That misses the point.

The comedy and the litigation arose from something similar: an instinct to puncture solemnity, question convention and find the unexpected angle. Humor, like litigation, could expose absurdity. Both could reduce intimidating authority to human scale.

The ACLU presented Barocas with the Roger N. Baldwin Award. He was named New Jersey Attorney of the Year. He taught at Rutgers. Colleagues praised a career spent defending civil liberties.

Yet even receiving praise made him uneasy.

At the end of his career, Barocas found himself confronting a question that was almost the reverse of the one society had implicitly asked him throughout his life.

The world had wondered how much he accomplished despite his disability.

Barocas wondered how much he accomplished because of it.

Would he have developed the same empathy without knowing what it meant to be different? Would he have devoted himself to outsiders? Would he have learned to improvise so relentlessly? Would he have developed the ability to step back from a problem, reject the obvious solution and search for an approach no one else had considered?

There was no answer.

But the question itself demolished the mythology of “overcoming.”

Barocas did not defeat muscular dystrophy. Muscular dystrophy did not defeat Barocas. They inhabited the same life, shaping each other for decades.

His memoir Chasing Justice and Butterflies, carries the subtitle Overcoming and Becoming, but becoming may be the more important word.

He became a lawyer who instinctively looked for people the system overlooked because he knew what it was like to exist outside the norm. He became a strategist who searched for unconventional solutions because conventional physical solutions had been unavailable to him since childhood. He became a constitutional litigator who looked for cracks in government arguments because he had spent his life finding cracks in barriers.

And he became very good at making institutions move.

Barocas once recalled that his childhood hero was Horton the Elephant, the Dr. Seuss character who hears the Whos when nobody else does and keeps their cause alive when they cannot make themselves heard.

That’s the job.

Not to save people.

To hear them.

To amplify them.

To stand between them and machinery powerful enough to erase them and refuse to move.

Barocas did that.

He refused.

For 17 years at the ACLU-NJ, in a state whose institutions did not always appreciate the scrutiny, he refused.

The obituary is public record now. The book is published. The Newark consent decree is terminated. The podium at the New Jersey Supreme Court is accessible.

But perhaps the most fitting monument is less tangible.

Somewhere in New Jersey, a government lawyer confronting an argument that attacks an old assumption from an unexpected direction is encountering one more iteration of Eddie-mechanics.

Ed Barocas did not succeed despite being different. He spent a lifetime discovering what could be accomplished because he was willing to see things differently.

That is more than inspiration. It is legacy.