By Stephanie Bostaph, Communications Specialist, Disability.gov
For most people, the start of a new year involves making (or breaking) resolutions. But for Robin Wilson-Beattie, 2004 brought the diagnosis of an intradural spinal arteriovenous malformation (AVM), a rare congenital birth defect, which was located inside her spinal cord at the C4 level. Her AVM had started to bleed, and the pressure on her spine was causing both mobility and neurological issues.
After three surgeries to remove her AVM, Robin learned she would spend the rest of her life with a C4 incomplete spinal cord injury. She also discovered she was pregnant with her daughter, Abigael. “Her very existence represents the importance of being assertive and speaking up for your needs,” says Robin, who credits her daughter with giving her hope during a very bleak and uncertain time. “Becoming a mother not only gave me a voice, but it led to my career.”
When she is not working as a community ambassador and blogging for the Christopher & Dana Reeve Foundation, Robin assists with the production of “Handle with Care,” a radio show airing in Georgia that focuses on positive disability awareness. Her daily responsibilities include booking guests, composing interview questions, organizing promotional activities and assisting with outreach about the show. Since her job provides the flexibility to work from home, Robin says she can better manage her pain levels and place 100 percent of her energy toward her work.
“I’ve learned how important it is to be completely honest with yourself and your employer about your limitations,” says Robin, who also has severe clinical depression, anxiety and attention deficit hyperactivity disorder (ADHD). That’s not to say she thinks that individuals with disabilities are incapable of achieving their goals. “You may have to work harder and differently, but eventually, you will get to there.”
Robin explains that a crucial part of her success and positive attitude comes from understanding her illness, avoiding triggers and finding things that improve her mental health, such as spending quality time with her daughter. “There are no cut-and-dry accommodations. What may work for one person won’t necessarily work for someone else with the same disability,” she says.
Through her role as a community ambassador, Robin regularly spreads awareness about spinal cord injuries and connects people to the right resources that can help them. She hopes that by openly disclosing her multiple disabilities, she can demonstrate how the right medical support can help anyone contribute to society.
Robin is currently writing a memoir about her experience as a mother with multiple disabilities and the lessons she’s learned along the way. “Attitude is a large part of happiness – and hope. I have a lot of hope.”