Individuals with disabilities are disability experts.
Melissa first became involved in health advocacy for people with disabilities over a decade ago when she worked for the State Council on Developmental Disabilities. As a Consumer Visitor with the Life Quality Assessment project, she helped to interview hundreds of Regional Center consumers near Sacramento.
“As a woman with a developmental disability and a long-time advocate,” says Melissa “I am passionate about creating a healthcare system that meets the diverse needs of our community and that values us as both patients and people.”
I had a chance to talk with Melissa about her experience as a self-advocate, about her experience with healthcare over the years, and about what the Self-Advocate Advisory Committee hopes to accomplish:
How did you learn about WITH?
Melissa: I had done some health advocacy work for Dr. Kripke, the Director of the Office of Developmental Primary Care at UCSF. She encouraged me to apply for a position on the initial self-advocate advisory board.
What has been your experience with health care through the years?
Melissa: I currently have an awesome primary care physician. She acknowledges my autonomy, answers all my questions, and takes into account my physical access needs. She’s also willing to challenge her own assumptions about her patients with disabilities. I often wish I could clone her for my friends who are in need of a good doctor. I haven’t always been this lucky when it comes to finding quality health care.
In the past, I’ve had many doctors communicate with the person who has accompanied me to my appointment, instead of directing their questions and comments to me, the actual patient. I have also been inside many inaccessible medical offices and have encountered many pieces of inaccessible medical equipment. I find this especially frustrating when seeking treatment or preventative care for most women’s health issues.
What is the most common misconception that people have about you?
Melissa: When many medical professionals see my wheelchair and hear my speech impairment, they often make automatic assumptions about my intellectual capabilities. My speech impairment also makes some people wrongly assume that verbal communication will be difficult, if not impossible. It usually just requires a little extra time and patience. Medical professionals and people in general often fail to realize that disability is a true mother of invention. Many of us with disabilities use some pretty remarkable adaptations to accomplish both everyday tasks and nurture our adventurous side.
Was there an “aha” moment when you realized that you wanted to advocate not just for yourself, but for others with disabilities too?
Melissa: A few years ago, my husband and I saw an OB/GYN specialist to discuss family planning. The physician had never seen a patient with a significant disability who had questions about pregnancy. She was genuinely surprised by our inquiry. I thought this was nuts especially in disability-friendly Berkeley. A few weeks later, I heard Dr. Kripke speak on healthcare discrepancies for people with disabilities at a conference. I emailed her a long list of complaints and asked how I could help make the healthcare system better for people with disabilities.
What kinds of things would you like to accomplish on the Advisory Committee of WITH?
Melissa: So many organizations that center around topics that are important to people with disabilities fail to include people with disabilities in key leadership positions. WITH has given us the opportunity to have a powerful voice in changing the future of health care for our unique, but diverse community. I would like the SAAC to be a place where we learn from each other and about topics relevant to our mission. I would also like our members to influence the way the potential grantees think about including people with disabilities into their proposals.
Thank you Melissa!
Up next: Meet the other members of the Self Advocate Advisory Committee. Stay tuned…
The mission of WITH is to promote the establishment of comprehensive healthcare for adults with developmental disabilities designed to meet their unique and fundamental needs.