- Special Needs Alliance - https://www.specialneedsalliance.org -

A Self-Advocate’s Perspective

Melanie Courtney, a legal assistant with Frascogna Courtney PLLC [1], has conducted training in self-advocacy for The Arc of Mississippi [2]. The Special Needs Alliance recently interviewed her concerning this growing movement within the disability community.

SNA: How would you define “self-advocacy”?

Melanie: Self-advocacy is about empowering someone with a disability to have a voice, enabling them to tell parents, caregivers, doctors and others what they want and need.

SNA: Could you give us an example?

Melanie: My family and I recently interviewed a number of candidates for the position of personal attendant, so I wrote two lists. The shorter one was about the things I need help with. The longer one was about things I don’t need help with. Even though they were all experienced professionals, I think the lists were something new for them.

SNA: Please tell us more about why self-advocacy is so important…

Melanie: Too often, people with disabilities feel invisible. It used to be very common, when I was out in the community, for people to ask my parents questions about me when I was right there. It made me feel terrible. My service dog Madine has been a big help with this. She’s a black lab that’s been part of my life for over four years. I rarely go out without her, and I’ve found that she’s an ice breaker. People will begin by asking me about Madine, then move on to talk to me about other topics. This makes me feel good. I got Madine from Canine Companions for Independence [3], and she’s made a really big difference in my life.

SNA: Please tell us a bit about your experience training others in self-advocacy.

Melanie: After graduating from Hinds Community College in 2001 with a degree in paralegal technology, my first job was with The Arc of Mississippi. Although I had a short stint as receptionist, I quickly became involved in their self-advocacy training program. We’d have weekend retreats where I’d encourage others to discuss their hopes and dreams and where we’d talk about how to make ourselves heard. It was a very diverse group in terms of self-advocacy awareness and communications abilities. Some of the attendees wanted to get a job or had jobs that were frustrating. Others still had parents who were making most of their decisions for them. Others were looking for more independence in their living situations.

Becoming a self-advocate requires a change in mindset and attitude. One of my students had to move back in with her parents after Hurricane Katrina destroyed the group home she’d been living in. She’d become a lot more independent, so it was a big adjustment. It’s important to understand that self-advocacy doesn’t diminish the relationship with caregivers. It improves it.

SNA: What would you like to say to caregivers, service providers and others about self-advocacy?

Melanie: Don’t just assume that someone with a disability needs help. Let them tell you when they need help and what they need. Don’t jump to conclusions.

SNA: What would you like to say to other individuals with disabilities about advocating for themselves?

Melanie: When you’re out in the community, don’t be anxious if someone asks you about your disability. Be honest, but if they start asking other questions you don’t feel comfortable answering, just tell them that. You have the right to establish the boundaries of the conversation. You have the right to start the conversation. You have the right to shape your own life.