“Being disabled should not mean being disqualified from having access to every aspect of life.” – Emma Thompson
Fear can be a nagging voice and hard to ignore. It often inhibits others from doing what’s right. My daughter – who lives with chronic epilepsy – has experienced this firsthand.
As Gabrielle’s epilepsy has evolved over time, school officials let fear keep them from doing the right thing for her educationally. Ten days before Gabrielle’s official graduation date, I was told by her school’s authorities that she could no longer attend. They cited two recent separate incidents where her heart “allegedly” stopped and a second when her lips turned black.
It’s not like they were not aware of her seizures, having dealt with her medical issues for years. Even though a physician assessed her and explained to the staff of the school that what they were witnessing in Gabrielle was not something that would keep her from being able to attend school, they wouldn’t listen. No matter how hard my husband and I, an outside agency, and the doctor tried to convince them, the district would not budge. We were forced to concede.
Gabrielle was abruptly removed from school and separated from her teachers and friends. Instead of doing the right thing and providing her with the same public education as her peers, she was denied those last weeks due to fear. Staff conveyed their concerns for her health, for in their minds, she was “declining quickly.” But at home, we weren’t seeing what they’d been reporting at school. Gabrielle’s been home since early May, and while she may get emergency medications every other week, she’s not dying. She’s thriving.
But we’re still having to fight fear. Trying to find an adult day program that will look beyond Gabrielle’s condition at first seemed as challenging as working with her former school. One program declined placement as they felt like they couldn’t manage Gabrielle’s medical needs. I wanted to return to that program and ask the decision maker, “Doesn’t my daughter deserve the same rights as you? Doesn’t she deserve happiness, joy and opportunities?”
Since then, we have met with other programs willing to meet Gabrielle and her medical needs with confidence. In one particular program where they deal with seizures on a daily basis, the staff felt very comfortable handling many of the scenarios I proposed. I hugged the woman I spoke with afterwards and thanked her. It was a huge burden lifted off my shoulders, to know she’d be in confident hands. I also knew it was the right program when Gabrielle got out of her stroller and wanted to go outside to see the horses. She hadn’t done this when we visited other programs.
Finally, after all of those years dealing with people who were constantly fearful, we’d found a program that “got it.”