Phyllis D. Zlotnick, 69, died Oct. 13. (Handout / November 23, 2011)
The Hartford Courant
November 26, 2011
Phyllis Zlotnick fought effectively and tirelessly for the civil rights of people with disabilities. Her goal was to achieve equality for them in a society that often ignores them and their needs.
"She's at the top of the list of people whose vision and influence made tremendous changes for all people with disabilities — and for all people," said James McGaughey, director of the state Office of Protection and Advocacy. He said she has been the state's the most effective advocate for people with disabilities.
Phyllis, born Aug. 27, 1942, was one of three children born to Sidney and Marion Zlotnick. Her brother Seymour also had muscular dystrophy, an inherited disorder in which muscle tissue gets increasingly weaker. A sister had polio which left her lungs compromised. Her father was a grocer in Hartford. At first Phyllis wore leg braces, but when she fell down, she couldn't get up. She soon began using a wheelchair
Ignoring the conventional practice of institutionalizing children with disabilities, Sidney Zlotnick combed the country looking if not a cure for muscular dystrophy, at least for therapies which would help mitigate the increasingly crippling condition. Experts told him there was no cure, and that Newington Home for Crippled Children was the best place for treatment.
For periods of time — some short, some long — the parents would place Seymour and Phyllis at the Newington Home for Crippled Children, which, although a predecessor of Newington Children's Hospital, was a far different place at that time.
Phyllis experienced little tenderness or love at the hospital. She came to hate the staff and dread hospitals themselves. Her parents were allowed only one short visit a week, which they had to divide between their two children, who were kept separated.
When Phyllis celebrated a birthday at the home, she couldn't have any of the cake or presents because she had been punished and left in her crib, because of an altercation with another child. When new doctors arrived, they would bring Phyllis, undressed, onto the stage of the auditorium, to demonstrate the curvature of her spine.
After they realized that there was no cure or good treatment for muscular dystrophy, a progressive disease which usually ends in death in a patient's 20s, the Zlotnicks brought their children home. The Hartford school system had made no accommodation for teaching children like Phyllis and Seymour, but after their parents picketed the board of education, they allowed Phyllis to attend a special education class that had many students with many disparate needs.
"They were remarkably progressive parents," said Peg Dignoti, former executive director of the ARC of Connecticut and a close friend.
The family moved to Portland, where Phyllis would have been welcome at the high school — except that steps at the school made it inaccessible. Instead, she participated in classes via speaker phone, although never met her fellow students or engaged in activities with them. She graduated with honors in June 1960.
Zlotnick joined a sheltered workshop where she colored black and white photographs which no one ever bought. Her parents then brought her to Easter Seals Rehabilitation Center. When a receptionist job opened up, Zlotnick was hired.
In the '70s, there were tremendous hurdles for people who navigated the world in a wheel chair. She soon mastered the state building codes and would go out and look at construction projects and point out areas where it could be made more accessible — doorways widened, countertops or sills lowered, and ramps installed. She also began reviewing proposed legislation to see how it might impact people with disabilities.
"She could speak intelligently to the issues," said John Doyle, who hired her at Connecticut Easter Seals as a legislative liaison. Zlotnick had a specially equipped van in which she used to drive from her home in Hartford to Hebron, but after the drive became too taxing, she looked for work closer to home.
Zlotnick became an active volunteer with United Cerebral Palsy, and began to encourage the emerging practice of self-advocacy: people with disabilities speaking out for themselves. She lobbied for legislation that increased their mobility and independence, including curb cuts in the sidewalk and kneeling buses. She was a frequent presence at the Capitol, where her knowledge of the issues, calm demeanor and intelligence made her an effective lobbyist.
"She never said, 'It's just us. Persons with disabilities against the world,' " said McGaughey. "She said, 'It's my world too.'"
Sen. Lowell P. Weicker gave Zlotnick's name to President Ronald Reagan when the president was putting together the National Council on Disabilities, and one of the achievements of which Zlotnick was most proud was her input into the wide-ranging Americans with Disabilities Act, passed in 1990 over many objections. Friends said she considered her work on the Council drafting and urging adoption of the act her greatest achievement.
Zlotnick worked for a time as an aide to former House Speaker Ernest Abate and advised him on disability issues. When a bill concerning accessibility was scheduled for a hearing in a room in the state Capitol that was itself inaccessible, legislators were embarrassed and suggested rescheduling the meeting. Instead, Zlotnick suggested that they lift her in her extremely motorized wheel chair, into the room. It was a subtle but pointed lesson of the importance of accessibility.
"She made sure the press was present," said Ed Preneta, former program director at the United Cerebral Palsy Assn. Of Greater Hartford.. "It was a moment to be educated."
Zlotnick had an active life off the floor of the General Assembly. She loved boating and cruises, and went to Bermuda, eager to listen to the steel band into the wee hours. She spent hours at the computer and enjoyed watching webcams of cruises around the world. For many years, she smoked and did her own makeup and hair and could feed herself with a long fondue fork.
One of her happiest moments was on a small boat at Disney World where she was on the water, with the wind in her hair.
"This is the freest I've ever felt," she told a friend.
She was a master square dancer: the group was called the Square Wheelers.
As her illness progressed, her mobility decreased, and she no longer could transfer from chair to the wheel chair. She could not turn herself in bed or move anything but her right hand.
Eventually, she stopped driving her van, but her personal assistant continued to drive her. Zlotnick and others lobbied for a waiver in the Medicaid regulations that would allow people with disabilities to hire and train their own staff, and Vedia Ragin, whom she hired as her assistant, worked with her for nearly 15 years until her death.
When she was diagnosed with cancer a year ago, Zlotnick said she would never return to a hospital, and she did not treat it. She outlived all predictions — most "experts" said she would die in her 20s. Both her brother and sister have also died.
Zlotnick would not like to be called "courageous," said Stan Kozlowski, who also hasa disability and became the deputy director of the state office of protection and advocacy.
"We're just going about the business of life," he said. "Both for ourselves and for others, we open doors.".
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