By: Ray Simpson, The Arc MN Self-Advocacy Program Intern
“Advocacy for me has always been a core value.”- Lexi
This month for our self-advocacy spotlight Lexi will be sharing her self-advocacy journey and experiences speaking with legislators. Lexi is a self-advocate who learned at an early age how to speak up to get what she needs. When Lexi was young, she was very sick and often needed hospital stays. She would start feeling isolated and would ask the nurses to take her to see the aquarium located in the hospital. This taught her that speaking up for what you want, and need is necessary for your emotional, mental and physical health.
In her 20’s, Lexi realized she wanted to make self-advocacy her career. She decided to become a professional disability advocate. This means she would attend advocacy events, help organizations, and meet with legislators. Lexi went to school and obtained an associate’s degree for social work. She is currently in her first semester of getting her bachelor’s degree. In 2020, Lexi’s health was poor. She thought about dropping out of college due to access needs. But then she realized self-advocacy can be a career. Lexi expressed her joy about staying in school. “I’m really proud that I stuck through and did it.”
Lexi has a good support system. She relies on organizations like the ARC Minnesota to help her with her advocacy needs. She also works with organizations who both educate and advocates for individuals with rare diseases. Lexi has two dogs as well as friends who she considers family. “Friends are your chosen family. It’s really important to surround yourself with those who support you.” Her dogs stay near her and comfort her on days Lexi is in pain and is unable to leave the couch.
When asked about her most meaningful experience as a self-advocate, Lexi shared about the time she had in Washington DC. This was her first advocacy experience outside of Minnesota. Lexi traveled to Washington DC for disease week. Disease week included an organization called, Dysautonomia International. There, people learned about, and talked about rare diseases. She prepared bullet points she wanted to talk about with her legislators. She felt so passionate about what she had to say; she often went off script. After meetings were done for the day, she went outside and felt the sun on her face. It was that moment she felt affirmed and knew that advocacy was what she wanted for her career.
Lexi shared some advice about attending self-advocacy events and speaking with legislators. She believes continuing to show up in places even in places where you haven’t
always felt welcome is important. It sends a message of how important policies are to you. But make sure to take care of yourself. You can’t burn a candle at both ends. You also can’t legislate morality. Meaning, not all legislators will have the same opinions and beliefs as you. Some won’t be willing or able to understand your side. You will know if a legislator is interested in what you are saying if they ask you follow up questions and ask for resources. When you advocate for a cause, find as many people as you can who align with your values and moral standards. “The more people you are able to collaborate with the better.”, Lexi advises.