While there have been many impactful moments that spurred Melanie Davis’ advocacy, the one she calls the most impactful grew from a simple desire.
She wanted to go to her neighborhood school.
It was the late 1990s, and the school had just been made wheelchair accessible. Davis, who uses a wheelchair, would watch the neighborhood children walking to the nearby school from her window in the morning. It looked like fun. Although she “loved” the school she was attending at the time, she said, she just wanted to walk to school.
“It was super fundamental.”
Her parents were concerned. Davis recalled their caution – “This is going to be hard for you, it’s a brand-new school, new year, last year of elementary school, are you sure you want to do it?”
She also remembers her answer –”Yes, yes, yes, I want to do it.”
But when Davis started her sixth-grade year at the school, she found that although the school itself was wheelchair accessible, the bathrooms were not.
The barrier was not easily addressed. For weeks, Davis didn’t mention the problem to her parents. She was being punished at school and grounded at home for accidents. Teachers were unable to help and unwilling to listen. By the end of the year, Davis was no longer attending the school.
When she did talk to her parents, several weeks into the school year, they took action, reaching out and teaching her to reach out to the school, the department of education, the mayor, the governor, the city council. Davis remembers her mother taking her to the library to show her how to use resources to identify and reach the officials she needed.
And on the second-to-last day of school – after Davis had been on the news, after she had gotten sick from not being able to go to the bathroom – the building had an accessible bathroom.
“Did I get to go to school there? Not really,” she said. “But I made a change for someone.”
Davis will be making changes for more people going forward, as she takes on the role of advocate mentor, a newly created position at the Munroe-Meyer Institute.
“Melanie’s responsibilities are to develop and implement training for individuals with intellectual and developmental disabilities to participate on boards and committees and to effectively advocate across all systems in Nebraska and nationally,” said Mark Shriver, PhD, director of the University Center for Excellence in Developmental Disabilities at MMI. “Similarly, she will be developing and providing training for boards and committees about how to meaningfully include individuals with IDD in board and committee meetings and activities.”
Davis’ trainees also will include MMI faculty and staff.
“She will work to facilitate the meaningful inclusion of individuals with IDD in core functions of MMI including training/education, research, community and clinical services, and information dissemination,” Dr. Shriver said.
Karoly Mirnics, MD, PhD, said Davis’ new role was integral to the mission of MMI.
“Our goal is to transform lives,” Dr. Mirnics said. “A key component of that is to provide individuals with the capability to transform their own lives. Melanie’s efforts will enable the individuals we serve to find their own voices, not only in dictating their own goals but in shaping the public discourse and making sure the needs and concerns of the IDD community are heard and acted upon.”
Davis is well-suited to the role. She currently is a member of the Assistive Technology Partnership of Nebraska, co-chair of the Olmstead Transportation subcommittee, the Heartland Self-Advocacy Resource Network, a member of the governing committee of the Rehab Engineering Society of North America and a former member of Mode>Shift>Omaha, and she has applied to the Mayor’s Commission for Citizens with Disabilities.
She sees the creation of the new position – for now only a half-time role – as
“a trailblazing point,” she said.
“This is going to take a huge village, and I know that,” she said. Focus groups, existing curriculum, engaging with other self-advocate coordinators – Davis is set to explore many directions.
“People are always at community fairs, for example, wanting members and volunteers, but are they reaching out to the disability community? Do they even understand that that’s a segment of the population they could be reaching to? It never happened to me – it wasn’t until I started asking them.
“I’ve always been the kid who asked questions,” she said.
“Advocacy starts with questions. That’s a big piece for me. If you ask a question and don’t get answers, then you ask more question and more questions, and suddenly they say, ‘You know, you need to be here.’ That’s how you get a seat at the table.”
In addition to getting people with disabilities seats on boards and committees, Davis said she wants to help them interact effectively.
“Whether that means Roberts’ Rule of Order or more basic procedure, they’ve never experienced it,” she said. “For anyone, that can be intimidating. For a marginalized group, even more so – because of underrepresentation, lack of proper mentorship.”
Davis hopes to see her curriculum, when developed, used in places such as IEP meetings, as schools transition students into post-high school life.
“We have civics classes, we have social studies classes, we have transition plans. If the kids are interested in any kind of advocacy – even things like ‘I want to learn how to use the bus system – that’s still self-advocacy and being active in something. So how do we capitalize on that?”
Davis credits her parents for helping her share her voice. As she was an only child, she said, her parents knew early on that she had to be ready and able to speak for herself.
“If that means you interrupt 50 people to get your point across, so be it,” she said. “Because there are some rooms, you won’t get that chance. While I maybe didn’t learn things about the ADA and 504 (the federal language that defines the rights of individuals with disabilities to participate in, and have access to, program benefits and services) in a real concrete way, I knew that I had rights. So how do I exercise them? How do I say, ‘This isn’t fair?’”
And as her personal story shows, she said, the mission is bigger than “self”-advocacy.
“The things that occurred in my life, they’re done and over. I can’t change those things,” she said.
“What I can do is advocate for things to be better in the future. And I can mentor people to be able to make the changes they need.”