A Conversation About Disability Rights in Education

“We need to move our schools toward increased inclusion and disability justice.”

Emily Brooks: I felt so tired and anxious watching the video of Betsy DeVos’s confirmation hearing that you posted the other night. Every time I read the news lately, it feels like a punch in the gut. Hearing our new Secretary of Education say it was a state’s issue whether students with disabilities continue to get the protections from the Individuals with Disabilities Education Act, and that she was unsure what IDEA is, was a horrible shot of adrenaline.

I wanted to reach out to you because I feel like we are approaching this intensely bad situation from a similar perspective—full of anger, fear, and the need to do something! I’m angry as a disability rights advocate, educator, and autistic person. It digs into me that our leaders are offering up children’s futures to a person who’s articulated more of a plan for counter-attacking grizzly bears than for educating disabled students.

In Betsy DeVos’s comments about IDEA and Jeff Sessions’s ableist remarks about inclusion, as well as in their proposed policies and histories, I imagine them addressing students with disabilities and saying: “You’re not welcome.” I am heartbroken by the possibility that the next generation of disabled people could grow up without schooling rights. My own relationship with public education is complicated, but I am here to fight. I just didn’t expect that in 2017, the fight would so quickly shift to trying to keep disabled students’ access to education at all! It’s a fight frighteningly similar to half a century ago, when young people wanted to attend their neighborhood schools and parents wanted education (and not institutions) for their kids.

Nicole Chung: Thank you so much for sharing your thoughts with me, Emily. I couldn’t sleep after watching those clips from Betsy DeVos’s confirmation hearing; like you, I was furious. I think about her and get mad all over again a minimum of three times a day. And overriding all of that is the worry and fear I feel for my younger daughter, who is on the spectrum. She is awesome. Our society is ableist and pretty fucked up. So I am frequently worried for her.

When it comes to accessing needed services, education, and support, my husband and I are in an extremely privileged group: We are both employed and insured. We live in a good school district. The staff at our kids’ public elementary school are committed and caring. We have understanding employers who give us the flexibility we need to attend her meetings and appointments. We have knowledgeable friends and relatives who can advise us when we ask. We are navigating all of this in our first language. We’ve done battle with our insurance company more times than I can count over the past three years, and even our ability to do that—to educate ourselves, understand our child’s rights, and advocate for them as a team—is a kind of privilege; it’s not something every parent has the capacity or the time to do.

When you have a child with a disability and advocate for their education and the school-based support they need—and again, because it cannot be stressed enough, they are entitled to no less under the law!—it’s a nonstop fight. It’s a long game, but every day counts, and the stakes couldn’t be higher. Our daughter’s current classroom teacher is wonderful, probably the ideal teacher for her first year of real schooling, but we’ve still had to put a lot of time and effort into helping special educators and school therapists recognize her strengths and how she learns best. It’s a never-ending job helping them understand what she can do, encouraging them not to underestimate her, emphasizing the unique way she learns and the accommodations and supports she needs in order to thrive.

I think the Common Core requirements—and universal public education goals more broadly—can construct a kind of box inside which many children with or without Individualized Education Programs (IEPs) just may not fit. And instead of questioning the box and how we have constructed it and tried to cram kids inside of it, we often decide the problems to fix are the kids themselves.

Something in me just broke watching DeVos speak about IDEA—the law that ensures my child’s access to the education that is her right—with such blasé ignorance. She clearly had not even bothered to educate herself about the rights of students with disabilities. And it’s hard not to assume this is because she just does not care about disabled students, their education, or their futures. I am often confronted with the fact that many view kids like mine as unimportant, less than deserving, but to see such views so firmly entrenched in and legitimized by this administration makes me feel so sick and angry and scared as a parent.

Given your experiences as well as your expertise in disability studies and education, I would really like to know what you think about how many schools and educational systems currently serve students with disabilities. What are some positives and negatives you see? And how in the world do we advocate for the reforms that are still needed under an administration ignorant of and outright hostile to the rights and needs of children?

Emily: I appreciate you sharing you and your daughter’s journey with me as well. I’m emotional thinking about how much she stands to lose. I’m also emotional thinking about many adults with disabilities I know who needed IDEA to get through school.

One of the strongest parts of IDEA is the fact that it exists at all. Publicly educating disabled children is neither a global standard nor a longstanding tradition in our nation. Without accessible school buildings, services, and supports to help students learn, and the belief that disabled people deserve education, a lot of young people get excluded. IDEA isn’t just about providing equal access to a classroom, but also about providing necessary individualized supports and services. Students are supposed to learn in the “least restrictive environment,” not be automatically separated on account of disability. They are supposed to receive services regardless of their family’s financial situation. IDEA has parental rights built in, so if administrators make a decision about your daughter’s education with which you disagree, there are ways for you to fight. When it is interpreted and implemented as intended, IDEA chips away at ableist barriers that hold disabled people back.

What really concerns me is how schools often don’t adequately serve disabled students, despite the law. The system has a foundational problem: Special education in the traditional sense springs from the idea that disability is a medical problem within the individual, and that the best way to deal with disabilities is to help fix or overcome them. During an evaluation, trained specialists determine in what areas students are delayed, struggling, behind, atypical—a medical model process guarding the gates to disability services. The subsequent plan is framed in terms of deficit and remediation, which can fail disabled students by presuming incompetence and promoting low expectations.

Schools and special education systems often position disabilities as limitations that get in the way of learning, instead of viewing our society as limited in the way we understand learning. Disabled students are excluded from learning and social activities, bored by the same repetitive lessons for years, barred from advanced classes and gifted programs, or set on paths that leave them with certificates rather than high school diplomas. Underestimating what students can do because of their disabilities, then refusing to provide engaging and inclusive learning environments and the supports necessary to be successful, active participants in their own education, is a form of violence against young people that will impact the rest of their lives.

In addition, kids of color and English language learners are disproportionately and inappropriately diagnosed with certain disabilities, while autism and other disabilities are often whitewashed instead of properly diagnosed across race and gender. Schools fail to provide enough bilingual special education and related services. Gendered, heteronormative “social skills” lessons suppress LGBTQ disabled students’ authentic identities. Disabled students of color are also much more likely to be placed in “more restrictive” settings, like self-contained special education classrooms or special schools, and are particularly vulnerable to the grim reality of the school-to-prison pipeline. And poverty impacts parents’ available time and energy to advocate, like you mentioned, as well as options for children beyond the traditional public school system.

Allowing our Secretary of Education to proceed without resistance would be abysmal. A voucher-based or privatized system could invalidate rights because disabled students aren’t entitled to the same protections in private schools as they are in public schools. If states individually determined disability schooling laws, educational quality and extent of supports would vary from extensive to bare-bones. That’s why I think it’s important to fight federal policy changes that impact young people from all states, as well as focus on local individual action.

We absolutely cannot afford to surrender, regardless of who’s in power. Even more than rights, we need justice—movements against oppression in education are longstanding. I hope that the incredible resistance to DeVos that we saw from disabled people, students, teachers, and parents will continue as this administration challenges our civil rights. It’s so important to include disability as we fight fascism. Right now I’m finding solace and energy through organizing with experienced educators and advocates, and having conversations like this with friends like you who passionately care about the future of young people with disabilities!

I’m curious about what you want the education system to change for your daughter, and what you see as positives for her. I’m also interested in whether helping your daughter receive the educational support she needs to thrive has made you reflect on your own educational experiences.

Nicole: I wish everyone knew more about autism, first of all—for all the combined knowledge and experience of her teachers and other staff, I feel like I’m always educating people who are expecting my child to be like some other autistic kid or kids they’ve taught. I wish they looked harder at strengths instead of evaluating everything based on curricular levels and “areas of need.” I wish they were willing to be even more flexible and incorporate more strategies that might be extra work, but yield positive results.

All that said, I think right now her school is doing a good job working with her and helping her learn. Personally, given where we are, we are loath to sign her educational rights away and try a non-public school setting, but we know it’s still early days and things could change. A lot of my worries stem from how things will go in the future, actually, because we’re still at the beginning of her education. I know my husband and I will always feel the need to be vigilant and make sure we’re aware of how things are going at school, what her team is doing, what else she needs. We’re always aware that things could change and we would need to advocate for something different. You can’t address an issue you don’t even know about, so you can’t drop your guard for a single week.

To answer your question, I do think a lot about my kids’ educational experiences versus my own. I went to a tiny parochial elementary school (which was not a good experience), and then switched to public school in middle school. I remember one “accommodation” I got in grade school was being sent to the resource teacher because I was the only kindergartner reading at my level. (Kindergarten was not so academic back then, which was probably a good thing, but that also meant my kindergarten teacher wasn’t necessarily equipped to give me higher-level reading and phonics work.) The resource teacher would handle my reading instruction, and then I’d go back and join my class.

When I remember that and then look at my own kids’ disparate experiences in their school, I think about how my neurotypical child—and really, every kid—would also benefit from an education plan focused on her strengths and tailored just for her. (Imagine what that would look like, and how much all students stand to gain!) My older daughter went into kindergarten reading chapter books, Ramona and Betsy-Tacy and the like. We were concerned she would be bored—and she was, a little—but she also had teachers who were ready to move her into appropriate reading and math work, so she never had to leave her own classroom to build on what she already had. As for our younger daughter, I’m grateful she gets support and individualized planning at our school. But sometimes I feel the tradeoff for the good public school system we live in is this constant focus on levels and achievement and (eventually) test scores, and no matter how well they know her or how well they support her, I don’t know how she is going to fit into this very narrow framework for evaluation. I also don’t think the intense focus on goals and levels leaves much space for how most kids learn, even though I also see why schools and teachers are held accountable for them.

I mentioned this in a recent essay, and in past conversations with you, too: What I really want is for my child to be respected and feel empowered in her own school; to eventually be an active participant in planning for her own education. That’s her right, and it is something every kid deserves. That’s the most important goal I have for her schooling, by far. It’s what I think about whenever I am tired or worried or need energy to fight.

Ableism is so entrenched in our society, and at the same time invisible to so many people. I remember being impressed by Hillary Clinton’s platform on autism. I hoped that autistic people like my daughter might gain a powerful ally who genuinely tried to educate herself about these issues and advocate for them. It felt like in the area of autism and disability rights, as in so many other areas, we were looking at a possible step forward versus a clear step back in this election.

Emily: I liked that Hillary’s education, healthcare, and employment plans included disabled people. I liked that she had an autism plan that wasn’t just “Step 1: Eliminate Autism,” and talked about serving autistic people through the lifespan. I liked that she had experience with finding out why marginalized children, including disabled children, weren’t attending school before it was their right to attend.

Trump’s campaign was steeped in ableism, in a disturbing and oppressive way. But ableism is also visible in our structures and systems and daily interactions. It’s in this administration’s life-threatening healthcare proposals. It’s established at both the policy level and at the hyper-local level in our schools. I hope we can fight oppression within education, and teach and learn from one another. No matter how far we’ve come, we need to keep moving our schools toward increased inclusion, accessibility, neurodiversity, and disability justice. We can reject ways in which the special education system upholds white supremacy, heteronormativity, and trans-exclusivity, and we can scrutinize school practices instead of students.

Imagine if knowing students’ disabilities were a way to understand how to make the material most accessible to them, and there wasn’t so much pigeonholing based on outdated ideas about disabilities. Imagine if students’ goals for themselves, no matter how lofty, mattered more than externally imposed goals based on “normalization.” Imagine if the language of accessing disability services centered on strengths and differences and individual interests. Individualized, strengths-based education, as you mention, would benefit everyone. As we work to dismantle the oppression embedded in our education systems and our society, we will increase support, safety, and acceptance for all young people.