When Amanda Baker was an undergraduate at Florida State University Panama City, she used to have weekly meetings with the dean — two of them, actually. One dean in his office, the other on speakerphone. But she was never in trouble. She was the trouble.
“I had a set day that I went in there. He’d put the dean of the Tallahassee campus on the phone and say, ‘I have Ms. Baker here. Do you mind telling her — again — why she can’t have her bathroom?’”
Baker, who has cerebral palsy, uses a wheelchair that was too big to fit into the minimally ADA-compliant stall of the building where she took classes. To access the usable restroom, she needed to exit the building entirely. It was inconvenient, frustrating and familiar: In high school, she could only use a particular toilet inside a storage closet.
Finally, in her last semester, Baker watched construction crews revamp the bathrooms to accommodate her and future students like her. She graduated with a degree in communications, which she has since put to good use.
“I’m really heavily involved in a lot of advocacy work,” said Baker, who is vice chair of the Florida Developmental Disability Council and president of Florida Self-Advocates Network’d, better known as FL SAND. “Because I’ve lived through this myself, I’ve wanted to be able to help other people.”
The 37-year-old works for a state agency that helps people with disabilities find and maintain employment. She was so grateful to get the job two years ago that she drove her wheelchair to get there: four miles in each direction through the Panama City heat, and sometimes rain.
“I’ve worked in wet clothes,” she said. “I got hit by a van and I still went to work! I worked so hard to get this job and I was not going to lose it.”
She has subsequently gained access to transportation services that take her to work and home again, but that really isn’t enough for such an active person.
“I’m really heavily involved in a lot of advocacy work…because I’ve lived through this myself, I’ve wanted to be able to help other people.”
“I can’t go to the store when I want or go out with my friends and do anything like that,” she said. Traveling for advocacy work has become more challenging, too. Security screenings are intrusive, and airlines are raising the premium for seats with the leg room her condition requires.
“It’s really getting more difficult; it’s part of why I want a wheelchair van so badly,” she said. “I just really want to be able to go where I want to go when I want to go.”
Her dream of having a wheelchair van is why she opened an ABLE United account. The money she puts into it will grow tax-free and won’t harm her eligibility for the Medicaid services she needs to help her get bathed and dressed, and to help get meals prepared.
Baker plans to start her own business soon as an analyst for others with disabilities. In addition to being a disability consultant and speaker, she’ll prepare reports for people with disabilities that want to work but need to thread the needle to maintain their benefits.
Her goal is to make enough money that she can get off of Medicaid, at which point she could really ramp up her ABLE account contributions.
“All I want — all l ever wanted — was the equal chance to make my way in the world,” she said.
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