74 Interview: Meet Minneapolis’s First Autistic School Board Member
After a year of trying to get special education services for their son, Sonya Emerick decided it was time to advocate on a whole new level
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Updated
It’s not easy to be a first on the Minneapolis School Board. The board has had Black and Latino members for decades. It has had Asian, Muslim and LGBTQ members, and the country’s first elected Somali official. Its first Native American director, Peggy Flanagan, is now Minnesota’s lieutenant governor.
All this diversity notwithstanding, Sonya Emerick is a first, elected as the board’s first autistic director in November. When Emerick, who is transgender, took the oath of office Jan. 3, they became, it’s believed, the second autistic school board member in the United States and one of four transgender people elected to a school board in 2022.
Emerick, 41, decided to run after spending most of the pandemic trying — and failing — to secure basic instruction for their son Foxy, who is homebound and communicates with assistive and augmentative technology. The boy got in-home therapies but never received the hundreds of hours of interaction with a teacher for kindergarten, and now first grade, mandated in his Individualized Education Program — the legal document that determines a child’s special education services. The resistance Emerick, a community organizer and activist, encountered sparked the unique campaign that propelled them to office.
This interview has been edited for length and clarity.
By law, children whose disabilities prevent them from leaving home are entitled to the same free and appropriate public education as other kids. Your experience trying to get support for Foxy tells a different story.
My younger child, who is 7, has been a Minneapolis Public Schools student since he was 2, when he first started receiving special education services. My early experiences of advocating for him were challenging, but overall positive. As he got older, the advocacy got more challenging. Then there were the additional challenges of the pandemic and the state of the city of Minneapolis in the aftermath of George Floyd’s murder. Everyone started to have to advocate a lot more on behalf of themselves and their families.
How that played out for my particular kid, because of the nature and complexity of his disabilities, is that he basically stopped receiving the educational services that were in his IEP — services he is legally entitled to. I did what, as a parent, I am empowered by the law to do, which is to use the alternative dispute resolution process to try to work collaboratively with the school and district to figure out how to get my kid’s education delivered.
I worked really hard for a whole year and went to 40 hours of IEP meetings to try to get it done. We were not able to do it. Though my direct dealings with the IEP team weren’t 100% free of conflicts, the real difficulties didn’t lie with a teacher or a building administrator or anyone who I had direct access to. The barriers to getting my child’s most fundamental, basic educational needs met were much more at the systems level, above the pay grade of every person at the IEP table.
I had two choices: to move into litigation with the district or to try to move where I had access to influence systems-level problems and barriers. I chose the latter. When you litigate in special education, it’s a significant amount of time and financial resources. It’s very, very draining on a family emotionally. Even if you get the best possible outcome, it still begins and ends with one kid, typically. I decided I can do something with a bigger impact. That’s why I decided to run.
There’s a second layer. The systemic form of oppression called ableism has a very dehumanizing impact. As a disabled parent of two disabled children, advocating in the school system for one of my kids, these really traumatic — I don’t think I’m being too extreme when I use the word “traumatic” — experiences occur. I experience that trauma as a disabled person trying to navigate these systems, and as a parent, watching my child have to experience this oppression.
The deficits-based narratives we impose on kids who receive special education services — we have to use those narratives in our conversations about our children, with parents, families, caregivers. It can really start to impact your relationship with your child. You sit down to play with your kid or hug your kid or read to your kid or put dinner in front of your kid and it’s there all the time as something that you’re either choosing to mitigate or to ignore or choosing to believe or work not to believe. It builds something that exists between you and your kid. Think of the violence of putting something between someone and their baby that interferes with their relationship and the developmental support that exists for that child. That will exist for that family forever. It’s generational.
I was in an IEP meeting and a special education director said, “For kids like your child, who are difficult to engage…” I had to interrupt and say, “If we’re having difficulty engaging my child, educationally, that’s a problem with our instruction. That’s not a problem with my child. My child is extremely engaged.”
The way we talk about disabled kids, no one even thinks about it. What if I didn’t interrupt? I think about all the times that I haven’t interrupted, and then I think about as a white person, as an English-speaking person and as a person who has expertise, the safety that I believe I will still experience after interrupting — those are privileges a lot of people trying to navigate these systems don’t have.
I have seen some pretty amazing videos of Foxy you made for his teachers. Why did you start doing that?
I actually created a website of video and images of him and got the district to agree as part of his IEP that it would be an official tool for evaluation. That the evidence that I upload onto this website is used to determine his services, because I just don’t trust that traditional tools always capture everything.
Foxy has been literate since the age of 3. But he is also non-speaking and has significant communication difficulties. He can type the entire book “The Very Hungry Caterpillar.” He can type many books. He can use capital letters and punctuation and spaces. But I was told when he was 5 that we didn’t need to put academic goals into his IEP because a functional IEP [one that addresses basic self-care skills] would be fine. The idea was that we wouldn’t even make an investment in his academic instruction because it wasn’t worth it, we would just teach him life skills like hand washing or picking up toys.
So you changed people’s beliefs about him.
I don’t know that I did. Where that type of advocacy has been effective is with educators. When I show his teachers what he can do, it definitely informs what kind of instruction they provide. They can observe where he has skill and plan for that. But I don’t know that it has necessarily had a significant impact when you go above the educators who are directly teaching my child. Sometimes I almost feel like it’s a cute party trick: “Look at what my kid can do. He’s so skilled and amazing.” “Wow, that’s so great. He’s so cute.” Yet it doesn’t alter programming or prioritization or get them to hire a teacher or anything like that. It’s frustrating to get really creative and spend a lot of energy designing advocacy mechanisms and then have a system that’s so broken it’s impenetrable. As an individual parent, there is no amount of advocacy I could do that would have the impact that my child needs just at, like, baseline level.
When the idea of running first came up, was there an “aha” moment?
No. Honestly, my initial response was a feeling of shame. That I would think that something like that was for me — an autistic person with other disabilities, who was not successful in school, didn’t go to college, tried to pursue a few different career paths and was not successful, and ended up living in survival mode, parenting in acute poverty for a couple of decades. I have never in my life gotten messaging that this kind of opportunity was for me.
So my initial experience wasn’t “aha.” My initial experience was, “How foolish am I that for one second I would think this is something that I get to do.” That’s painful to think about.
You did not run a traditional campaign, yet you credit its novel aspects with helping you win.
Filing to run is easy. You fill out a one-page form, you pay $20. But actually running? I’d never been involved in electoral politics before. I’d been a community organizer and an activist, but I’d never worked on a campaign. My participation in electoral politics began and ended with voting.
I talked to somebody who said, “You need a kitchen cabinet, a group of people you meet with maybe every week to help figure out your campaign.” I found a very small group. We tried designing a big field strategy where we mapped out every week, phone-banking, door-knocking, fund-raising — really specific goals. It wasn’t something that we held onto because we found we couldn’t plan that far out. Part of that was resources. And part of it was the way that my body and brain function because of my disabilities.
Autistic people do not yet have a disability support services system anywhere in the country, as far as I know, that really takes a look at adaptive support needs [daily living skills that may need to be taught or approached differently], which is where many autistic people have significant need. And it’s also an area of need that’s quite easy to mask [by working to appear as typical as possible].
Autistic people can do many things, but we can’t do many things. I can do 10 things, but only two of them today. The other eight I have to outsource, because I run out of processing power, because I get tired, because I need a lot of recovery. That’s hard to assess.
For us, what worked was to do something, evaluate it and then decide the next thing. We planned out a week. Let’s try phone-banking. Let’s try an event. How many events can Sonya do in a week? How many hours can Sonya do in a day? I don’t know.
I found out I can’t door-knock, which is hard if you’re a candidate. Things like steps and walking on inclines and those types of things I can do for a few blocks, but then I’m at risk of falling, of going to grab a handrail and missing. Then the other challenge of knocking on a door as an autistic person is not knowing if I would be talking to somebody, if I talk to somebody, who are they going to be, how they are going to receive the fact that someone’s knocked on their door to have a conversation. Then having to try to be effective — that elevator stump speech at the door was just so far beyond what my social communication skills are capable of. As an autistic person, there was too much uncertainty.
What I could really do well was go to community events and talk to people there. I had no problem going up to folks, giving them my literature. I didn’t have to do as much coordination because I’m just walking around a parking lot or a blocked-off street. If I go out door-knocking for an hour, I might talk to 10 people on a good day. But I can go to an event for an hour and talk to 100. I started doing as many events as I could. There were weekends where I hit eight events.
There was a time where I was told we would need to hire a social media person because the job was too big to ask anyone to do it without compensating them. I didn’t think that’s a priority in terms of our limited spending. I was like, Okay, let’s game it out. We need someone to create a calendar, someone to create the graphics and to create the text. And then we need somebody to post the posts. That’s four jobs. Can we get four volunteers? Are those jobs little enough that it’s reasonable to ask someone to do just one part?
I did the graphics, and we found three volunteers to do the other pieces. Not only was nobody feeling like it was too big of an ask, we got feedback that it provided more ways for folks to plug into the campaign. There was one person who took care of her kids during the day but was happy to schedule our social media posts late at night. She was like, “I’ve really wanted to volunteer for the campaign. I can’t do events or door-knocking, but this is something I can do.”
We made a variety of little volunteer opportunities. It was a great way to get folks to help us out, because we didn’t ask them to be in a certain place at a certain time. By the end of the campaign, we had almost 100 volunteers, not counting people who came to a meet-and-greet or got a yard sign.
When I think about special education, I want opportunities to be differentiated [presented in different formats for people of differing abilities] like this so everybody can be involved. There should be a way for everybody who wants to plug in to plug in. A lot of this came from the principles of the Disability Justice Movement and around dismantling white supremacy culture.
We had a saying: The means is the work. It’s where the real work is.
But you didn’t start out centering those principles or your needs.
I grew into myself over the course of campaigning. Early on in a kitchen cabinet meeting, I was apologizing for something that didn’t require an apology. Someone said, “This is the second time during this meeting that you’ve apologized. I get the feeling that you think that we are all going to abandon you. I need you to know that we’re not waiting for you to do something wrong so that we can decide that we don’t support you after all.” She wasn’t just being nice, she was being really clear.
I had impostor syndrome. I was so afraid that these people who are investing significant money, time and energy in me being in this role were going to find out that I’m not who they think I am. But what actually happened is that I found out that I wasn’t who I thought I was. I saw myself as unworthy. Maybe able to mask well enough to convince people that I had some value or skill. But they saw me as someone who could bring something needed to this role. And they were right.
Their belief held me while I was figuring out how to believe in myself. I’m changed because a group of people decided unequivocally that they believed in me and decided to act from that belief, consistently, 100% of the time, regardless of how I acted. If there was a day where I had a symptom flare up and couldn’t get out of bed, they still believed in me. If I made a mistake, did something I shouldn’t have done or forgot something, they still believed in me.
Once I got a taste of what it felt like, for the first time in my life to feel believed in, I was like, this is what every student in our district — and everywhere — needs to experience. What would it be like if our students experienced this unshakable belief in their goodness, their worth, their abilities? That wasn’t conditionally based on how they act today in school, or this test score, or this assignment, but because they’re worthy of belief because they are here.
There is a particular experience a lot of disabled people have where we’re thought to not be capable. It becomes part of the story we tell ourselves about ourselves. There’s so many kids, some because of disability and some for different reasons, who we’re teaching that they are not worthy of belief. We talk about the belief gap as racism, and it certainly is. We have kids of color, Black kids, Indigenous kids, who are not believed in because of who they are.
Think about how inextricably tied ableism and racism are. You don’t have to be disabled to experience ableism. It’s a set of beliefs that some bodies and minds are more worthy than others. We decide that some children are capable of learning to read and some are not, some children are worth academic investment, some are not. Some children are worth the support needed to stay in a classroom even when they’re having a tough day and some are not. That is ableism.
I could talk to you all day about this, and the trauma of the thing that gets inserted into the parent-child relationship, but I should ask you about your yoga ball.
I’m glad you asked. The majority of the campaign, I didn’t expect that I would win. I really had to think about what our goals were other than winning to keep us going. I had prepared myself for if I didn’t win, how I would deal with the fallout. But I didn’t prepare myself for if I did win.
I called the person who had probably been my closest support in terms of disability and access and said I’m in this dark place because I’m alone now. I’ve had this whole team directly supporting me every single day. Now, that part is over, and I’m going to go be a school board director and I have to do it on my own. I am a disabled person who will always need significant support to execute my considerable strength. I don’t think I’m going to be able to do it.
She said, “Who told you that you have to do this on your own? You needed a high level of support to campaign and nobody thought something magical was going to happen if you got elected and you wouldn’t need it anymore.”
There’s this adage I like — I don’t know who it’s attributed to — if you feel like you’re walking in circles, look down, because you’re probably moving on a helix. It may look like you’re back in the same place, but you’ve come to a new plane. I experience my life like that a lot.
I have to build out what that support looks like now. I was successful campaigning because I let it have breathing room. And I can feel now, because of the state of crisis that our school district is in, that it can feel like there’s no space, there’s no time to do anything like that. So I have to ground myself. I go back to my campaign experience and say, we were able to be successful, giving ourselves room to figure out how to be authentic and not leave anyone out. The means is the work.
So, the yoga ball. If I have to sit for a meeting or any sort of situation where there’s a lot of information, a lot of executive functioning, I can modulate my processing experience through continuous rhythmic movement. Sitting on a yoga ball behind the dais will give me a way to support my processing so that I can integrate all the information and the discussion and the presentations, and be super present and effective.
I already have the ball at district headquarters because I know I’m going to need it. But what happens if I need a sensory break during a meeting? What happens if I need somebody to repeat something? I don’t know if I will. If I do, we’re going to have to have a conversation about what does that look like. I can’t identify all the needs beforehand, because it’s experiential. It’ll be an adventure to figure it out.
I’m not saying everyone should be expected to do this by any means, but there is value when people choose to do this in public. Disabled people are supposed to be invisible. Institutionalization is a primary mechanism through which disabled people have been kidnapped out of society and put away so that no one sees us. If I can’t be a visibly disabled person and be a school board director, then I’m not included. It doesn’t do me any good to try to hide my process as a disabled person.
I hope that having an identifiable disabled person behind the dais will let kids who receive special education services see an example of what kind of life they might prepare for. And I hope that having a visibly disabled person behind the dais will show caregivers and educators of students who receive special education services what kind of future they might need to prepare their kids for.
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