Nothing about us without us

Community organizations, state agency and UW researchers partner to improve pride-centered disability education tools.

aj, fernandale
A.J., Ferndale

“I felt like I was always the person looking in, wishing I was a part of everything — but I wasn’t.”

Twelve years ago, a group of youth advocates with disabilities had reason to celebrate.

Anna from Issaquah
Anna, Issaquah

They’d convinced the Washington state legislature to pass a law requiring public schools to offer instruction about disability each October, during Disability Awareness Month.

At the time, the legislature wrote that the law should “inspire students with disabilities to feel a greater sense of pride, reduce harassment and bullying, and help keep students with disabilities in school.”

But it didn’t work out that way. The vast majority of Washington’s public schools never even heard of the law. To this day, few Washington schools teach about disability history and justice in October — or ever.

In fact, according to a 2018 investigation by KING 5, Washington is not doing a great job overall for kids with disabilities. According to KING, only 5% of the state’s 150,000 students receiving special education spend most of their day in general education settings with their peers — a lower rate than all but two other states. And Washington ranks a dismal 38th for graduation rates, with a staggering 42% of students in special education never receiving diplomas.

Voices of One Out of Five

In the following collection of videos you will hear students from across Washington State share their experience navigating schools and communities with a disability, as well as a podcast discussing the impact of this curriculum on teacher education programming and classroom practice.

An unfunded mandate

“They passed a law — but it was an unfunded mandate,” said UW College of Education Associate Professor Katherine Lewis, who herself has a disability and whose work focuses on students with disabilities. “There were no curricular resources, and no supports for teachers to actually go and engage their students in conversations around disability.

“So about three years ago, the Governor’s Office of Education Ombuds [OEO] and Disability Rights Washington/Rooted in Rights [RIR] decided to partner together to create a disability-focused curriculum that promotes a positive disability self-concept — that really centers disability history and pride.”

Julian, Vancouver
Julian, Vancouver

However, as OEO Director Carrie Basas pointed out, while OEO and RIR had a lot of experience in general disability advocacy, they didn’t know much about creating a curriculum.

“We were very concerned about creating something in a vacuum,” Basas said. “We could have tried to create a learning resource on our own. But I wasn’t an expert in that. So we put out an all-call. At the time, we were fortunate to have an intern from the UW College of Education who put us in touch with [College of Education PhD candidate] Sarah Arvey.”

A partnership is born

The partnership, between OEO, RIR, Arvey and Interlake High School special education teacher Adina Rosenberg, worked together to create the One Out of Five (OO5) Disability History and Pride Project. The title is inspired by the fact that one out of five people in the U.S. has a disability.

The centerpiece of the project — an idea of Basas and Clark Matthews, a video storyteller from RIR — was a series of videos featuring students with various disabilities sharing their own experiences in schools and in their community.

Arvey and Rosenberg used the videos as a baseline to create a free, online curriculum (see story below) , tied to the Common Core, for middle school teachers which covers the basics of disability history and pride.

Kenassa, Shoreline

While OO5 was initially designed for middle school English Language Arts classrooms, Arvey said that since their release, the OO5 videos and learning resources have been used in classes for other subjects, teacher professional development and other venues. Arvey has also tested the curriculum with teachers through U-ACT, the UW’s accelerated certification for teachers program, in partnership with fellow PhD candidate Boris Krichevsky.

According to Rooted in Rights director Anna Zivarts, making kids’ voices and personal experiences the centerpiece of the OO5 learning resources made perfect sense, in the spirit of the slogan of the disability rights movement, “Nothing about us without us.”

An even more unique aspect of the partnership, Zivarts said, is that RIR’s videographers and storytellers including herself, Arvey and OEO’s Basas all identify as having a disability.

“It was really cool for the kids in the videos to see disabled adults as part of the process,” Zivarts said. “It allows kids with disabilities to see themselves as part of something — not isolated from everybody else. That they’re connected to a community that’s there for them. It’s something they can take pride in.”

Unite:Ed for the next step

Making the initial round of videos, along with Arvey and Rosenberg’s curriculum, available to teachers was just the first step.

“Are they resonating?” Basas said. “We’ve watched the videos with many people and had discussions — but are we on target? Lots of times people come together with an idea they think is great, and it’s not what anyone really needed.”

Podcast: Disability Studies Curriculum and Practice in Teacher Education Audio Extra

Download a transcript of the podcast

COE Soundcloud

Zivarts shares that concern. “The first round of videos has been out there in the world for a     while and we hear they’re great — but understanding with much more detail and rigor what’s working and what isn’t working is going to be really helpful. It’s much harder in the context of classrooms to get real feedback.”

To help address those questions, OEO, RIR and Arvey partnered with Lewis, Arvey’s PhD advisor, to successfully apply for a Unite:Ed grant (see story in this issue ). The grant will fund research on the effectiveness of the OO5 videos and curriculum. Research questions include how the videos and curriculum can be refined and improved and what teacher supports are needed.

“We’re trying to gather qualitative data about teachers implementing these lessons and the students experiencing them,” Lewis said. “Because there aren’t a lot of curricular resources out there, we’re at the beginning of understanding what teachers need and what will benefit students.”

“How can we create and provide more effective teacher tools — so they feel more comfortable using the resources and thinking about the student experience?” Lewis said. “What elements help build teacher capacity to engage with disability justice in their classrooms? That’s where our research really comes in, and that’s what this partnership is about.”

Arvey said the partners will also use the research findings to make a plan for the next round of collaboration. She said some areas of interest include identifying how to achieve wider dissemination of the videos, leveraging social media, creating a “train the trainers” program      and figuring out strategies to crowdsource more disability and inclusion stories.

Let’s be awkward

“The key learning we want to get across is that we have to talk about disability,” Basas said. “Because disabled people are still socially isolated. Teachers think they’re doing the polite thing by not talking about it — they feel awkward.

“But that’s not where we should start. I really think non-disabled people should feel a little awkward. I think disabled people go through the world and feel out of place. Let’s be awkward together and sort through it.”

“One of the really beautiful things I’ve seen in classrooms is when a teacher feels a little nervous when they don’t feel they have a strong background and haven’t participated in a lot of these dialogues,” Arvey said. “I’ve seen teachers take up a level of vulnerability — a co-construction of knowledge with students, by sharing their own inexperience with these types of conversations.”

Arvey shared one teacher’s report that her class was especially moved by a video featuring a student whose disability wasn’t obvious — but which greatly impacted his everyday activities.

“It was clear that most students in my class had not thought of this type of disability before … I even had a student that had an iPad for the same reason as the boy in the video,” the teacher reported. “He waved the iPad proudly and was eager to share his tool with the class. I saw students become more interested and they were like, ‘Whoa! That’s so cool!’”

“Looking back at my own childhood, I didn’t know people with disabilities,” Zivarts said. “And the discomfort adults felt around my disability made me feel a discomfort. Being able to know there’s a community, and a history of other people fighting for people with disabilities, is really, really important for developing a sense of confidence in a world that to this day shies away from talking about it.

“This feels like a very productive partnership. There’s a deep commitment to ensure that what we’re doing has value for everyone and is really making a difference. And there’s a deep commitment to talking about disability. That makes it worthwhile.”

Free teaching resources

students working with digital media
Warren, right, works with Clarke Matthews, lead producer of Rooted In Rights, as part of a series of student voice videos centered around Washington students with disabilities.

While teaching about disability in October is the law for all Washington public schools, it’s a mandate that’s rarely followed.

To help improve that situation, the One Out of Five (OO5) videos and curriculum are free and available to all for use in classrooms, other educational settings and personal use.

The curriculum consists of the student voice videos, along with five detailed lesson plans that add context and depth to the videos.

Lessons include an introduction to disability which discusses disability as an intersectional identity and centers the voices of youth with disabilities, information about disability history and activism, activities to help students develop disability allyship skills, and additional resources and lesson ideas for October’s Disability Awareness Month.

While the curriculum was originally designed for middle school English students, curriculum designers Sarah Arvey and Adina Rosenberg said the materials are adaptable to other grade levels and venues, and feature curriculum topics that can be taught either individually or in order.

“When the curriculum has been used, students from kindergarten through high school really engaged in meaningful conversations,” Arvey said. “There were no instances where kids didn’t want to talk about it.”

Community partners

Charlotte, Seattle was featured in a student voice video produced for One Out of Five.

Governor’s Office of the Education Ombuds

The Governor’s Office of the Education Ombuds (OEO), led by Carrie Basas, was created by the legislature in 2006 to support Washington families, students, educators and communities. Its goal is to educate, share information and resolve concerns independently from the public education system.

OEO cannot investigate concerns or enforce any laws. Instead, it works to reduce opportunity gaps through collaboration and offers free information, trainings and outreach on a wide variety of topics to advance educational equity in Washington’s public schools. It also conducts informal, impartial and collaborative conflict resolution for families, educators and community professionals.

Rooted in Rights

Rooted in Rights, led by Anna Zivarts, is based in Seattle and is an affiliate of Disability Rights Washington. The organization, staffed by writers, videographers, storytellers and other staff members who identify as disabled, focuses on telling “authentic, accessible stories to challenge stigma and redefine narratives around disability, mental health and chronic illness.”