On March 12, 1990, the Capitol Crawl occurred at the U.S. capitol building in Washington D.C. Over 1,000 people marched from the White House to the Capitol and up the steps to demand Congress pass the Amercans with Disabilities Act, or the ADA.
The Capitol Crawl presented a physical demonstration of how inaccessible architecture impacts disabled people. Jennifer Keelan-Chaffins was the youngest person to climb the steps: she was eight years old at the time and had already been protesting for two years.
Nicki Vander Meulen is a Madison Board of Education member and juvenile attorney with Asperger’s Syndrome, Attention Deficit Disorder and cerebral palsy who also became a disability advocate by the age of eight.
“I was not allowed to start preschool because I couldn’t walk right. Starting at three on, I used to walk with the babysitters’ kids to the preschool and suddenly we didn’t go there anymore and I wanted to know why because I could already read, and I wasn’t allowed in the building,” Vander Meulen said.
Vander Meulen clearly remembers the difference in the way she was treated compared to the other kids at school. One day at school she was rocking back and forth in her chair. The chair flipped over and the teacher ordered the entire class to laugh at her— and they did.
“I had three kids try to throw me down three flights of stairs in the gym locker room. Nobody intervened. I know what those days are, I would rather not relive them, which is why I’m on the school board. I want to make changes,” Vander Muelen said.
Ultimately, Vander Meulen’s experiences as an individual with disabilities has shaped her into the person that she is today, forcing her to use her voice and passion for advocacy. Vander Muelen attended law school at UW–Madison, where her classmates filed complaints about her using a note taker and continuously questioned how she got in. After graduating from law school, she applied to 300 law firms that refused to hire her after she disclosed her disabilities. Vander Meulen decided to create her own path by starting her own firm handling juvenile and mental health, where she could help children and adults with various needs.
Vander Meulen is not afraid to use her voice and speak up for what she believes in, no matter how uncomfortable it may make some people. She’s especially passionate about the injustices within the healthcare system that she continues to deal with on a daily basis, even at 43 years old.
She reflects on her most recent experience at the eye doctor, where the nurse checking her in would only talk to her mother, assuming that Vander Meulen was not capable of speech. The infantilization of disabled adults is an ongoing problem within society and, ironically, within the healthcare space.
During the COVID pandemic, Vander Muelen had to ask her doctor if he was going to treat her. There were 12 states who tried to ban the use of ventilators among the disabled, by giving individuals without disabilities priority because they believed that they had a better quality of life.
“I noticed you use the Minnesota model that allows the use of rationing of ventilators in case of emergencies and allows for disability criteria to be used, I need to know right now if you will save me,” Vander Muelen told her doctor.
On Dec. 2, 2021, the Wisconsin State Journal published an article which shed light on the story of a boy named Malix Kulczewski who was going through heart failure. When his father asked a UW Health doctor about a heart transplant, he responded that it wasn’t a possibility because his son has Down syndrome.
Kulczewski’s story created an awareness of the injustices against disabled people that occur on a daily basis and led to a national push to ban hospitals’ denying an organ transplant or discriminating against a patient because of a disability.
Vander Meulen feels passionate about fighting for disability rights because she knows what it feels like to be discriminated against. She believes a lot of reform is needed within the healthcare space regarding the way in which doctors treat patients.
“I finally found a dentist who understands disability. He is absolutely wonderful. He gets it. He actually talks to me, rather than just talking to my mother. He gives me follow-up calls to make sure things are going well. He asks things like, ‘how does this feel’ or ‘does this work for you.’ Nobody asks me that. It’s usually, ‘this is what we’re going to do.’ It makes you feel like a lab rat a lot,” Vander Muelen said.
Isabel Arya Gralough-Shah, a current journalism student at UW–Madison, was diagnosed with autism at three years old because she was not speaking yet. Isa discovered that many of her struggles have occurred within institutions of education and medical fields, and the lack of understanding and accommodation from her teachers and doctors.
Isa explained that autism presents very differently for different people, and especially for women. Essentially, the expectations certain teachers had about autism did not align with the way Isa presented herself. Because she masks very well, her teachers assumed she didn’t need help when she really did.
“This semester I had a class where I expressed to my teacher previously, hey, so I can go into the testing center to get the testing alone and time and a half if you could just bring it to the testing center, and they didn’t listen to me so they were like ‘oh do you just want to come 15 minutes for class and take it in class?’ and I said I guess, sure, because I didn’t really have any other options. During that test, everyone was coming in, the sounds were overwhelming me and I couldn’t focus so I started to break down and cry in the middle of the exam, and I failed that exam. It was awful, it was a very awful experience. I had to go through my McBurney advisor to talk to my professor to be like, hey this is what happened during this exam and it can’t happen again, and now, after the breakdown, he believed me,” Isa said.
Ultimately, there is a need for increased awareness and a better understanding of the everyday struggles of disabled individuals. In order to challenge the assumptions that many people have around disabilities, it’s crucial to share the experiences of others to educate our society on a topic that is not talked about enough.