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Barbara Anne Barnes of Southampton, a longtime advocate for people with disabilities and a vocal member of the town’s Disability Advisory Committee, died on Mother’s Day, May 10, a week after falling ill with pneumonia and battling subsequent complications. Diagnosed as an infant with severe muscular dystrophy that confined her to a wheelchair, she was 46.
Born July 12, 1962, in Southampton, she was the first person with a severe physical handicap to attend the public schools from elementary through high school, graduating in 1980. Her brother, Benjamin “Chippy” F. Barnes IV, who was 10 years her senior, was born with the same condition and similarly died of pneumonia and complications at the age of 15, during a family summer camping trip in Taos, New Mexico. He died before graduating from Southampton High School.
At her high school graduation, Ms. Barnes received an extended standing ovation, and survivors recalled many tears of joy and pride in the eyes of her classmates, school staff, friends and family. She was a pioneer dedicated to the idea that future students with physical handicaps should have equal opportunities for, and access to, a full education and activities that are the right of every child.
Ms. Barnes lived a very full life determined not to allow her disability to prevent her from achieving life goals that she envisioned. She received a bachelor’s degree in 1984 from St. Andrew’s College in North Carolina. At St. Andrew’s, she was the first handicapped uniformed cheerleader at the school. She later received her master’s degree in rehabilitation and sociology from Hofstra University in 1986. She put her education to good use and became chairwoman of the Town of Southampton Disability Advisory Committee. Active in issues surrounding access for those with disabilities, Ms. Barnes pointed out in an article that appeared in the April 5, 2007, Press, “If you don’t have a disability, you tend not to see these things. The ADA [Americans with Disabilities Act] brought a lot of attention to the issue. People are less ignorant now than they were. Before, accessibility just wasn’t part of their vocabulary.”
Family and friends of Ms. Barnes were determined to see her enjoy a full life despite her physical handicap, beginning with several annual summer camping trips with her family as they traveled by van throughout most of the United States, Canada, and Mexico to see the national parks and landmarks. She also was invited by her mother’s sister and husband, Roland and Sis Roux, to make repeated visits to Disney World.
Ms. Barnes also volunteered as a member of the North Sea Fire Department Ladies Auxiliary.
A member of Sacred Hearts Church, she served regularly as a lector. Her wheelchair was a familiar sight at weekend masses, and often at the Christmas midnight mass.
Ms. Barnes often said, “If something happened to me tomorrow, I have had a great life,” and survivors noted that she was known for having made a difference and her courage, endurance, and spirit were admired by many.
She is survived by her mother, Barbara Barnes of Southampton, and her father, Benjamin F. Barnes III, now of Deltaville, Virginia; two brothers, Michael Barnes of Philadelphia and William Barnes of Franklin, North Carolina; and many nieces and nephews. She is also survived by her friend and health aide for 15 years, Sharon Blydenburgh.
A wake was held on Tuesday and Wednesday at the O’Connell Funeral Home in Southampton. A funeral mass was scheduled for today, Thursday, May 17, at 10 a.m. at Sacred Hearts Church in Southampton.
Memorial donations to the North Sea Fire Department Ladies Auxiliary, c/o Barbara Anne Barnes Memorial Scholarship Fund, Attn: Karen Reardon, 15 Valorie Road, Southampton, New York 11968 would be appreciated by the family.
on May 13, 2009