He Doesn’t Take No For An Answer
Brooklet, Georgia (Senate District 4)
Joshua Williams is a 23-year-old man with cerebral palsy and visual impairment. His cerebral palsy was caused by lack of oxygen immediately following his birth. Now, he has a pump inside his abdomen, which constantly administers a medication that helps him to regulate his muscles and organs.
Josh’s CP was caused by an incident having to do with not being given enough oxygen after birth. It’s not uncommon for infants to be administered oxygen to help them breathe in the first few minutes after they are born, but no oxygen was available in the place where he was born. After that, the early years were pretty challenging. Eventually, Josh began meeting certain developmental markers. He learned to speak when he was four. Mitzi was able to go back to work. They moved to Georgia when Josh was 10.
Until 10th grade, Josh was in self-contained classrooms in an intensive education program for students with developmental disabilities. He was bored and unengaged because they didn’t teach him reading or math. Eventually, when Mitzi figured out that Josh was not on track to graduate with a regular diploma, there was a big, emotional meeting where she challenged the school to try harder. Josh got into resource classes, individualized education courses focused on specific learning outcomes. It made an enormous difference. His teachers were amazed that, once they really started working with him and providing the right adaptations, he got it. One specific adaptation is that Joshua needs text to be magnified 200 times larger than normal print size in order to see and read. (Story continues below after slideshow.)
After having learned to really advocate for specific adaptations during his high school years, when it came time for college applications, they knew what they had to do. Josh had to be orally tested to get into college. Mitzi says, “When he got in, that’s where the Medicaid waiver was critical. I had to work. We got the waiver after seven years of waiting. If he hadn’t gotten that, if he was going to go to college, I was going to have to quit my job and go with him.”
Now, thanks to his waiver, Josh has Cookie. She has been his support staff and Certified Nurse Assistant, with some breaks, since he was 13 years old, most consistently since he started college. She helps him to get ready for the day and goes with him to school. Cookie says going to school with Joshua has been interesting, and sometimes it feels like she’s getting an education vicariously as a result. Georgia Southern college students come in the afternoons and on weekends to support Joshua. His mom, Mitzi, works full-time. Support staff, medications, and community activities are all supported by Joshua’s COMP Medicaid waiver and SSI.
Ideally, Joshua would like to live independently one day, but he knows how hard that would be. One of his greatest assets is that his family has installed a pool in his backyard. He gets in it many days of the week with his afternoon support staff and therefore is able to lead his own physical therapy. Given the warm weather in this part of Georgia, the pool is available to him nearly eight months of the year. On days when he can’t get in the pool, Joshua stretches out on his bed to do his physical therapy.
Joshua has taken a number of opportunities to advocate for himself and other people with disabilities, including the important discussion about Medicaid. If given the chance, he would do it again. “Just please save Medicaid waivers,” Joshua says. “It gives me a quality of life.” Joshua dreams of having a family and a job, no matter what it is. He says he wants his government officials to know that people like him are human beings, they’re constituents. And, he especially wants them to know that he votes.
For Mitzi, who works for Parent to Parent of Georgia, she feels like the perception of people with disabilities in Georgia is slowly getting better, but there’s a quality of life that has to do with going to school, being in their community, getting a job, having your own home, but you have to have support. “I need to work,” Mitzi says, “I’ve worked all my life. I’ve never asked for a handout. People think we’re trying to work these services, but that’s just not how it is. We are not freeloaders. We do what we’ve got to do, just like anyone else does.”
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon