Madelyn Milave, who lives in Minnesota, was diagnosed with spinal muscular atrophy type 2 at 18 months old in 2005. She shares what self-advocacy means to her and how caregivers can better support independence.
Transcript
Let them speak first — like, “Don’t speak for me,” type of thing. I think it’s really important for caregivers to encourage their, you know, patient — whatever you want to — client. I think it’s important for them to encourage them to be their own leader, to be their own advocate.
Just kind of stuff like that. Support their decisions. Support them in the ways that they need and always — like, don’t assume that I need help with something. Like, I’m gonna ask you if I need help. Don’t just be like, “Oh here, I got it.” If I need help, I’m gonna ask. You don’t have to just do it for me.
