Initiative Highlights ‘Differences’ Over ‘Disabilities’
JACKSONVILLE, Fla. — Susan Bell can’t contain her pride as she watches her 27-year-old daughter, who has Down syndrome, excitedly talk about her full life.
Megan Bell works three days a week at JAX Chamber, lives in a Southside apartment with a roommate, has a boyfriend and a busy slate of activities that include gymnastics, golf and surfing as well as advocating for other people who have disabilities. Her mother also can’t help but think of a late distant cousin, who also had Down syndrome but lived in a time when people with special needs had no such opportunities.
“They were put away,” she said. “That was not going to happen with her.”
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In Megan’s lifetime, many doors that were closed to people with special needs have begun to open, from employment to housing, because of advocates like her mother. But there is still more work to be done for the doors to fully open. So Susan Bell has taken on a new role, as an ambassador for Connectable, a Northeast Florida movement-in-the-making to help change public attitudes toward people who have intellectual differences.
“People are a little afraid, because they don’t know how to approach people who are different than they are,” she said. “But we are more alike than we are different. … The main thing is you want for your child to find happiness.”
Differences Over Disabilities
Connectable was the brainchild of local philanthropist Delores Barr Weaver. Three years ago after attending an event showcasing stories of local individuals with intellectual and developmental disabilities, or IDDs, she noted how often she heard the word “disabled” used. Through her work with area nonprofits, Weaver knew how much these people accomplished and contributed despite their differences.
“I want everyone to see what I’ve had the opportunity to see when I meet the clients of these agencies — that the persons with IDDs are doing remarkable things every day, that they are valuable and important contributors to their families, friends and neighbors,” she said. “I want people to stop thinking of persons with an IDD in terms of their limitations and to change the conversation to highlight the many ways they enrich our lives.”
Through her fund at The Community Foundation for Northeast Florida, Weaver initiated the year-long Connectable Campaign in August 2017, a public awareness initiative to shift from “disabilities” to “differences,” both in the nonprofit world that serves people with special needs and in the wider community.
The campaign featured advertising and social media components showcasing Megan Bell and other people with intellectual and developmental disabilities, and showed the public how to make connections with them.
“I am a really happy person,” Bell said in a video, which showed her at work at the chamber. “I do love my job and my office. I dress up, comb my hair, look nice.”
In the video, her mother talked about Megan and her fearless spirit.
“She has a love for life,” Susan Bell said. “Megan never gives up. She keeps trying and trying until she can accomplish the task at hand. … She can do anything she sets her mind to.”
Nina Waters, president of the Jacksonville-based Community Foundation, said the campaign made an impact.
“The nonprofit organizations … have not only been very receptive to the Connectable concept, but they are eager to work together for their common goals to improve the lives of those they serve,” she said. “In terms of the overall community, we’ve been pleased with the response so far and have been gratified by what seems to be a growing awareness that many of those with IDDs are actively participating in and contributing to their communities.”
The next step was an Aug. 15 summit, where about 50 nonprofit leaders received “practical information and tools for reinforcing the message that persons with IDDs have ‘intellectual differences’ rather than disabilities, as well as to provide these nonprofit leaders with a forum to discuss what they might need collectively to support their common goals,” Waters said.
Phase two will build on the campaign to spark a new movement. The nonprofits that took part in the summit are now sharing what they learned with their staffs and boards and will contribute information to the revamped Connectable website, she said.
Through the campaign and the summit, “good strides were made, but it’s a long-term process,” Weaver said. “My goal remains the same — to focus people on the gifts and abilities of those with IDDs, rather than on their limitations, specifically by changing the language we use and the messages we send. I look forward to seeing how I can support what it is the agencies need to pursue that goal.”
Waters said they want to develop a public “willingness to be open and ‘connect’ with persons in the IDD community, with the understanding that (they) … have the same aspirations that ‘typical’ persons do,” she said. “To have the love and acceptance of their families, neighbors and friends, to do productive work and to pursue their dreams.”
The ambassadors — currently Susan Bell and Karen Prewitt, whose young son has Down syndrome — are gearing up. They will serve as volunteer spokeswomen for the nonprofits and the Connectable mission at speaking engagements, trade shows and board meetings, among other events.
Bell said she was honored to be asked to participate.
“I am glad to see it continuing,” she said. “It is so important to get the word out.”
Even she is still working on not using the word disabled.
“It is so ingrained,” she said.
The effort to change public perceptions will be a long road, built by many simple conversations such as Bell telling someone about her daughter, her daughter telling someone about her job or her golf game.
“Just little things like sitting down with someone at lunch … finding out you have something in particular in common,” Susan Bell said.
Jacksonville, she said, “is on the brink” of being a city that can lead the conversation.
“Now is a wonderful time to be living here,” she said. “So many opportunities are being opened.”
Opening the community’s collective mind about their abilities will produce more opportunities, particularly in the workplace.
“We were one of the fortunate ones. There are so many special-needs young adults out there who would love to have a job.” Bell said. “If given the chance, these young people could excel and so much more.”
At the chamber, Megan Bell’s duties include putting informational packets together, shredding documents and cleaning. She was hired by president and CEO Daniel Davis, who also appeared in her Connectable video talking about her gregarious nature and dependability.
Her hiring was “new territory,” he said.
“We had to make sure each department knew there were opportunities for Megan to accomplish tasks for them,” he said. “It took a little while for us to figure that out, but we did. … Looking back on it, I wish I would have done it sooner.”
Susan Bell is eager to get to work making Connectable an ongoing, life-changing movement.
She knows she may well encounter people who are reluctant or unwilling to change their perceptions. In such instances, Bell will search for small seeds of commonality.
“I don’t want to be confrontational. I will be more of a listener,” she said.
Like her daughter, she is fearless.
“When I don’t know what I’m talking about, that would scare me,” she said. “But I know what I’m talking about. You can’t fake it.”
© 2018 The Florida Times-Union
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