Autistic School Board Member Pushes for Inclusion, Understanding
For most of her life, people questioned whether Nicki Vander Meulen belonged—in a traditional K-12 classroom, in law school or on the school board of one of Wisconsin's largest school districts.
When doctors diagnosed Vander Meulen with Asperger's syndrome, attention deficit disorder, and cerebral palsy as a child, her parents fought for her right to attend the neighborhood elementary school.
The school's principal thought she belonged in a school for the severely disabled. Her parents knew otherwise.
Despite a counselor who told her that she'd never graduate from college, Vander Meulen went on to graduate from high school with honors and earn undergraduate and graduate degrees from the University of Wisconsin—where her law school classmates questioned whether the university providing a notetaker for her constituted an unfair advantage.
Now, a board of education member for Madison, Wis., schools and a juvenile defense attorney, Vander Meulen may be one of the few people in the nation on the autism spectrum serving in public office.
Vander Meulen recently spoke with Education Week about her life as a school board member with autism and her work as an advocate for children with disabilities. The interview was edited for length and clarity.
How did you decide to run for school board?
I kept seeing my juvenile clients being stopped and either cited or arrested for striking a [classroom] aide or other physical things that were directly related to disability. These are individuals who would not be found competent and were not found competent in the court of law. I realized the only way to protect these individuals was to get on [the school] board to make sure that the zero-tolerance policy [didn't] continue and to make sure that students with disabilities had rights that were enforced—not just on paper, but [in] practice.
How close are the nation's schools to ensuring that children across the country are being educated in the least restrictive environment?
We don't have the staffing levels. That's part of it. And we're still dealing with the belief that children [with disabilities] can't be educated with their peers. Studies have shown the absolute opposite. It (is) a combination of overcoming the stereotypes, making sure that we have the one-on-one aide, the special ed aide, the behavioral education aide, and oftentimes those are the first positions to get cut or limited when there's a budget problem. And that causes a lot of heartache and a lot of problems because you don't want a tiered education system.
You've talked about battling the misperception that students with disabilities can't learn alongside their peers. Why do you think that persists?
I think it persists because this isn't easy. This is not easy work in a society where you're focused on test scores. When you're focused on funding and funding is limited, you're going to focus on the most expensive [students to educate] because it affects your test scores and it affects your rankings. They're a child and they deserve [an education] no matter what. We need an actual nationwide commitment. These are all our kids and they all deserve an education.
How do you connect with your constituents?
I'm the only board member who visited all 50-plus schools in our district. I've met with parents, [parent teacher organizations] and the students themselves. I need to know how their lives work and I need to come to them. They don't need to come to me. We have this assumption, if you have a problem, you have to [go] to the board. No, the board [should] come to you. We're the public servant, not the other way around. I've actually [met] with large groups, constituents of very different backgrounds because I'm willing to go wherever they need me to go and meet. If I could do that without a driver's license ... I don't see why others can't.
Are accommodations and attention given to your needs as a school board member?
Yes, they are because I have a district that will provide the accommodations, but not every [school] does. I want to bring it up to the forefront that this is a major issue, It's a civil rights issue, it's an equal rights issue. Sometimes the message doesn't get there.
(Editor's Note: In December, the Hartford Courant wrote about Sarah Selvaggi Hernandez, a former Enfield, Conn., school board member with autism. She sued the school board, alleging she was discriminated against because of her disability.)
Would you encourage other people with disabilities to serve on their local school boards?
Absolutely, I find this incredibly enriching. In order to have a seat at the table you have to play a role politically, as well. These [are] major, major decisions on how resources are used and how children are educated. The only way you can fix the system is from the inside out. You need to hear unrepresented voices and oftentimes individuals with disabilities have little or no contact and that needs to change.
You've served on the school board since 2017. What's been the biggest surprise during that time?
How little the public knows about disability rights. They don't know so they don't understand, oftentimes, how they work or what accommodations are necessary. We're not getting an unfair advantage we're just leveling the playing field and making it equitable, but to a lot of people, this is a concept that now requires additional [education].
You helped draft the original version of Wisconsin's Public Act 125, which regulated the use of restraint and seclusion in state schools. Does the state's law need to be updated?
We are now tweaking that to make it a stronger law, requiring the Department of Public Instruction to be notified when these seclusion and restraint techniques are used and to ban the prone position completely. Kids can't learn if they're afraid to be hurt. They're afraid they're going to be physically segregated, separated, or physically controlled. I don't think I'd be able to go to school and not be in fear. These techniques, I understand [using it during an] emergency situation, that is one thing. Many schools use this a behavioral tool. That to me is not OK.
Photo: Courtesy of Jordan Anthony