74 Interview: Minnesota’s Groundbreaking Push for Teacher Training on Ableism

Lobbyist Jillian Nelson barely survived special ed in HS. Now, she’s working to bring the disability justice movement to the state's classrooms.

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In the coming days, Minnesota is expected to enact a first-of-its-kind law promoting teacher training on ableism and the history of the disability justice movement. The goal is to encourage the same kind of cultural competence that educators are asked to learn to make their classrooms welcoming to students of color. 

Recommended but not mandatory at first, the professional development will be created and provided by people with disabilities. Backers believe the law will be the first in the country to empower people who experience ableism to educate teachers about it.

The bill was the brainchild of a group of people with disabilities, along with parents and advocates. After comparing experiences, they realized how often they encountered ableism in schools — even in classrooms supposedly designed for them. An organization founded by parents — many of them immigrants — called the Multicultural Autism Action Network spearheaded the effort to add disability awareness to teachers’ continuing education. The proposal is poised to be among the final measures passed into law before the legislature adjourns May 20. 

A key lobbyist in the effort is Jillian Nelson, community resource and policy advocate at the Autism Society of Minnesota. Recently, she talked to The 74’s Beth Hawkins about the bill, being diagnosed with autism, her own experiences with ableism in school and the job she says was created just for her. 

This interview has been edited for length and clarity.

Not too long ago, the very idea of an autistic lobbyist was hard to fathom. How did you end up breaking that barrier?

I have really struggled getting by in life as an autistic person. I had a hard time in employment before I landed here, struggling with different things like relationships and getting the accommodations necessary throughout school and college. The Autism Society of Minnesota has given me the backing to do work I only ever dreamed of. Our amazing leadership team saw my strengths and created a role where I could utilize those in the best way for our community.

I run our information resource hotline. When people are going through challenges or newly diagnosed, I provide insight and help them navigate a world that’s fairly complex. I also do all our resource fair outreach work, which means I get to go out and connect with people.

And then all those conversations, I put them in my pocket and I head up to Capitol Hill, where I work with other organizations to advance disability law and create a great and equitable place here in Minnesota for people with disabilities to not just live and survive, but to thrive and have the same opportunities as everyone else. 

It also really matters to be working in a place where every single person around me is either autistic or understands autism. I can show up to work as myself without having to mask or play games that I don’t understand. 

Can you explain the term “mask”?

Masking is an emotionally exhausting process of pretending or portraying yourself as neurotypical or just like everyone else. People who mask go to great lengths to appear to have no disability or struggle and to just fit in. But when things don’t come naturally — like following every single social cue — it’s incredibly tedious to pick and choose what to say and do at every step of the way. Sometimes you get it right and sometimes you don’t. 

This year, you and your colleagues seem to have gotten a lot right. In less than two months you shepherded a bill addressing issues many people aren’t even aware of through a complicated legislative process where good ideas often go to die. 

This was born out of an opportunity a couple of years ago to bring together people with different types of disabilities to talk to the Minnesota Department of Education about their experience as special education students. One of the topics that came up was ableism and the not-so-great experiences they had surrounding that. 

The response this group received was so warm! But also, it was devastating that so many teachers came up afterward and said, “No one’s ever talked to us about ableism. No one’s ever given us this information. I wish I had known so I could have done better.” 

Children with disabilities, we’re turning them over to a system that doesn’t often recognize their existence as part of a broader culture. There might be bullying or assumptions that a student can’t do something. That presumed incompetence — we don’t give students with disabilities a chance to fail. We keep them in this bubble because we think they can’t succeed because of their disability. 

We want the youngest members of our culture to grow up with less trauma, with this sense of belief that they can do things that people in the past may have told them they weren’t capable of because of their disability. 

I think it’s going to surprise people that educators — especially special educators — aren’t routinely exposed to this information. 

One of the big disconnects is that disability in our education system is seen as a medical condition or a qualifying condition. When we teach about disability, we teach out of medical criteria. A lot of teachers are very familiar with the criteria for different disabilities. They know the laws they’re required to follow in special education. But everything is taught in theories: Here’s a special education learning theory about social-emotional learning, about social skills learning. We teach a lot on how to teach but not how to understand. 

The disability culture is the only group where we currently allow teachers to teach in a classroom that is filled entirely with children from this culture and have absolutely no cultural competency training or requirements. That’s what the ableism and disability justice bill is really about. It’s about creating cultural competency among teachers who are working with children from this really unique and beautiful culture. 

Disability as a culture is a relatively new concept. You have described deaf culture as a model: In 1988, students at Gallaudet University staged what’s known as the Deaf President Now protest, demanding that the school’s next leader be deaf. It seems ridiculous today that a hearing person would be seen as more capable of leading such an institution than any of the people it serves. Yet it was an “aha” moment when teachers heard from former special education students. 

It’s been a slow shift. As our society has shifted toward inclusion, and with the development of social media and technology, people with disabilities from all over the world have been able to connect and identify with one another. We realized that experiences we were having, the things that felt so isolating or challenging in our lives, that we weren’t alone in those experiences.

We stopped being individuals that this was happening to. We started to be a culture of individuals with shared experiences. People with disabilities started asking for what they needed to live full and impactful lives. 

It’s a tall order to help someone whose professional identity is tied up in seeing themselves as a student’s best advocate to see that they’re engaging in ableism. 

In high school, I wasn’t diagnosed with autism. I was a special education student, but for emotional behavioral disorder. My special education transition plan was that I would get a job in customer service or food service, because that’s what they believed I was capable of. Despite the fact that even my special education testing showed I was in the 99th percentile IQ-wise.

I graduated without ever taking the SATs or applying to a single college because the people that were in charge of helping me plan my future as a young person with disabilities never saw that as a possibility. That idea that they knew best and they were protecting me from potential failure was the thing that led to my biggest downfall. By the time I was 20 years old, I was a homeless drug addict. I didn’t see any path for my future or have a whole lot of hope. 

After I got diagnosed, I had a case manager who forced me to go to college. It changed everything. Finally, someone believed in me. She was willing to put me in a position to succeed — while knowing that there was a risk of failure. Instead of saying, “You can’t do this because of your disability,” she asked me, “How can we do this with your disabilities?”

I don’t believe that our education system, our teachers, set out to set students with disabilities up for failure or limit us to a small window of potential. But we don’t know what we don’t know, and when we know better, we do better. That’s really the core. We’ve never given teachers this information or an understanding of this unique and amazing culture. If we can do that, we can inspire them not to try to save us from ourselves, but to help us be the best version of ourselves.

What hurdles to the bill’s introduction did you anticipate? And what did you actually find? 

I anticipated what we did actually find: teaching lawmakers what ableism is and convincing them why it matters. There were some that jumped right on board. Our chief author in the House of Representatives, Rep. Kim Hicks, has been an amazing champion. She herself is a legislator with a disability and she has children with a disability. 

On the Senate side, though, we faced a number of hurdles. We went to Sen. Mary Kunesh looking for some suggestions, not necessarily expecting her to take it on. I started telling her my story and how ableism had held me back for so many years, and how I often wonder what I would have achieved if they had believed in me in high school. 

She asked me where I went to school. It was the school district where she taught. She looked at us and said, “Do you have the jacket with you? I’ll introduce the bill.” When you realize that this isn’t just happening somewhere else, it’s happening at the place that you teach, that hits home. 

We had to make it very real for people. Not just a theory or an idea, but these are the experiences happening to children now. This is something that has been a generational problem for decades. 

If you received special education services for the wrong diagnosis, you probably experienced a particularly pernicious form of ableism. I’m guessing your behavior, whatever it was, should have been a red flag for a sensory issue. 

Social anxiety, 100%. I went to school, but I didn’t go to most of my classes for my freshman and sophomore years because I was so socially anxious. But I wasn’t the kid smoking behind the dumpster. I was hanging out in the library researching my special interest [an autism culture term for a topic a person enjoys learning about in great depth], or hiding in the art room working on extra credit projects.  

My experience and the services and support I received were a gigantic red flag of ableism. They assumed the things that were holding me back were a choice, versus something I had no control over. I didn’t end up in special education until my sophomore year of high school — well after Asperger’s syndrome was in the DSM (the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders). But we weren’t looking at individuals like myself and saying, “This might be autism.” We just assumed that the problem was not that I couldn’t do the things that they were asking me to, it was that I didn’t want to.

I have come to terms with being a later-diagnosed person with autism. But I think about how many things I missed out on. I graduated with a seventh-grade math level. I did special education civic engagement because they didn’t think I could handle the mainstream classroom with my classmates. Funny that I grew up to be a lobbyist. 

I wonder a lot, though, who I could have been if they figured out how to support me to my full potential, rather than to just manage what they thought of as behaviors. I wonder about all the opportunities that were taken from me because I just became a statistic. I think about a lot of the trauma that I endured as a teenager, being educated in classrooms with individuals that had very unmanaged, far more aggressive behaviors than me. 

So the hope is somebody who takes the training would look at a student who hid in the library and see massive evidence of engagement, and wonder, “Why is the student engaging there, instead of the social studies classroom?” 

I had teachers later on that did see that, and that’s where I got to thrive. When I was a senior retaking my sophomore English class — because I missed it, you know — my teacher asked me, “Why are you in my class?” I’m like, “Well, I’m here because the state of Minnesota says I need to be here.”

He turned my sophomore English credit into an independent study. The one assignment I had was to write a college-level paper. He said, “I’m not going to teach you how. If you need help, you’re going to have to ask.” He saw my talents, and he also saw what I actually needed to learn in that class: how to ask for help, how to work independently, how to plan my time. It prepared me for college more than writing a 10th-grade research paper ever would. 

I don’t want those teachers to be needles in a haystack, where there’s one or two. I want every teacher to look at a kid with disabilities with curiosity and ask, “How can we help them succeed?”

How do you introduce people to the idea that there’s joy and pride in a disabled person’s identity — things you would never want to change about yourself? 

One of the biggest things that I hope teachers take away from training about ableism is that we’re okay just the way we are. Feeling shame about disabilities? That’s not ingrained in us from birth. That’s something that we learn from the interactions we have with the world around us. I hope that as teachers embrace anti-ableism, instead of seeing us as a collection of deficits that need to be measured and tracked, they see the beautiful parts of our existence.

One of my greatest gratitudes about being autistic is the level of joy I get to experience in my special interest, in sensory things, in being able to see the world in such a beautiful, unique way that not everyone does. I hope that through this training, we can teach teachers to see that in their students, and we give students the opportunities to grow and learn to love themselves and find things to be proud of about their disabilities, versus just trying to make them conform to the expectations of a non-disabled society.

I got lucky when I landed at the Autism Society. But at the end of the day, I also recognize that all the things that make me so good at my job are because I’m autistic. I want future generations of kiddos with disabilities to grow up finding that pride and that joy in who they are.

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