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Merva Jackson: An Advocate For African Caribbean Community And The Disabled

Extraordinary Life

By ANNE M. HAMILTON

May 29, 2012

A college internship led Merva Jackson to her real calling: helping parents of children with disabilities learn how to get appropriate help.

The problem, as Jackson analyzed it, was that parents who sought help were often intimidated by school officials, doctors and lawyers. Many were not offered help in their native language. They didn't know the extent of the rights guaranteed them under federal and state disability laws. Their children ended up disproportionately involved in the criminal justice system.

They lacked knowledge and power. Jackson helped them gain both.

In 1999, the Hartford resident created African Caribbean American Parents of Children with Disabilities (AFCAMP), which, by offering parents training in advocacy, networking and lobbying, has helped thousands of children obtain the special-education services they need.

"She was a very passionate and very committed advocate, someone who had a vision of a just world," said James McGaughey, the director of the state's Office and Protection for People with Disabilities.

Jackson, 51, died on April 4.

She was born on Dec. 16, 1960, in Saint Ann Parish in northern Jamaica, but her mother died when she was 3 months old. She lived with her grandmother until an uncle, Lester Jackson, brought her to Hartford and adopted her when she was about 8.

She graduated from Weaver High School in 1978, and worked as a dietary aide at Hartford and Mt. Sinai hospitals, and at Oak Hill School, where she also worked in its group homes. In addition to people who are blind, Oak Hill has many students who have multiple disabilities.

"That started her passion for the disabled," said Jahmika Osbourne, her daughter.

Jackson enrolled in a social work program at Central Connecticut State University, and graduated in 1999, the same year Jahmika graduated from high school.

While in college, Jackson interned at the state Office of Protection and Advocacy for Persons with Disabilities, where she conducted a survey of the needs of families who were raising children with disabilities. She learned that many African Caribbean parents, as well as the churches and organizations they belonged to, knew very little about special-education resources and how to gain access to them. As a result, many children were not getting the help they were entitled to receive, she thought.

"It is a community that had many strengths and is very supportive, but there is a lot of distrust of [official] systems," McGaughey said.

After becoming aware of the community's need for more information, Jackson founded AFCAMP. She enlisted parents and showed them what special-education laws require schools to provide, and taught parents how to advocate effectively for a child's needs. She encouraged parents to speak up at school meetings and trained them to be advocates and serve on boards and committees concerned with child welfare.

Jackson pushed parents to take their knowledge and experience to the state Capitol, where they lobbied against cuts in mental-health and educational programs that could benefit their children.

Jackson also used her knowledge and persuasiveness to get agencies to work together, and cut through a lot of red tape.

"She helps parents develop skills to advocate for their children with special needs," said Ann Smith, AFCAMP's interim executive director. "Parents can go into school systems and planning meetings and advocate at the table with administrators and professionals."

Without the help that AFCAMP offers, many parents from the inner city are overwhelmed, Smith said. "She was able to identify the need for leadership training, and parents can not only advocate for their children but be part of system change," Smith said.

Instead of being passive bystanders, parents learned how to be forceful and knowledgeable advocates for their children.

Pamela Ferguson was one of those parents. When she moved to Hartford she had a young son with a serious speech impairment. He received some speech therapy and his mother thought he would outgrow the problem. By the time he started kindergarten, he had not made much progress, and the one hour of speech therapy his school offered was helping little.

"I didn't know what to ask for," Ferguson said.

She learned about Jackson and AFCAMP, which offered her help.

"I started to learn about special education, and advocating for your rights," she said. "I got extensive help for my child after they realized I knew what my rights were."

Today, her son gets speech therapy daily. He was confident enough to talk at Jackson's wake and be interviewed on TV.

"My son is a success because of my advocating," said Ferguson, who switched her profession from insurance to social work.

When Jackson became aware that behavioral problems led some children into criminal behavior, she helped create the Juvenile Review Board, a diversionary program funded by the state and the city of Hartford, and is run by the Village for Families and Children.

When a child is arrested for the first time, his name is given to the board, composed of parents, police and social workers. After an investigation into who was harmed by the crime and steps that can be taken to repair that harm, the child is helped to make amends for what he or she has done, along with community service and counseling.

Jackson's efforts have led to an expansion of the program: now, second-time offenders can enter the program; starting in July, 17 year olds can also be referred to it.

"It's a response to the crime and meaningful to perpetrators," said Sarah Walton, the board coordinator.

If the program is successfully completed, the child stays out of court, and only a handful of the children fail and enter the criminal justice system.

"She was a vibrant and kind soul who was not afraid to approach anyone," said Dee Flowers, a close friend of Jackson's. "She had a way of getting what she wanted without being corrosive or offensive in any way."

"Tenacious is the word," said state Sen. Eric Coleman, who saw her frequently at the state Capitol. "Merva was a champion of special needs students and education in general. ... She was very bright and spoke very quickly and exhibited a lot of enthusiasm for what she was promoting, and she seemed to have boundless energy."

At small meetings with parents, or lobbying at the Legislative Office Building in Hartford, Jackson couldn't be missed. She often wore long skirts of African fabrics and a colorful hair wrap. "She was an African queen," Flowers said. "Everyone turned around."

Jackson's love for fashion led her to open a small boutique in the basement of her house that she called Royal Dainty, and for the past decade, she organized a fashion show to benefit a school in Ethiopia. She often could be found dancing at the West Indian Social Club, and returned frequently to Jamaica, and traveled to South Africa, France and the Caribbean.

Her house was often the first place friends and relatives from Jamaica stayed when they came to the states. Her parties — especially two large cookouts every summer — were very popular, and featured Jamaican delicacies, including curried goat, rice and beans, and a soup of corn, peas and rice.

"Once you met her, you felt like a family member or best friend," said her daughter. "You would not forget her,"

She was diagnosed in 2010 with amyloidosis, a rare condition in which abnormal proteins build up in tissues and organs and the body produces an excessive amount of antibodies.

Jackson died unexpectedly while she was waiting for a heart transplant. In addition to her daughter, she is survived by three other children and six grandchildren.

"She had a sense of urgency because she saw so many people with emotional problems who were being swept up in the criminal justice system. That deeply offended her," said McGaughey. "To her, it was a justice issue. Why are so many of our children being lost to the streets and to the criminal justice system? She would point her finger and say, 'You people aren't working together.'"