Striving for Disability Equity –
A journey to greater understanding
by Laura Nash –
Northwest Health Foundation’s Communications Coordinator, Laura Nash recently connected with Spectrums Magazine to share with readers insight about the ways their foundation strives for disability equity and works to be a strong ally to the autism and disability communities.
What is Northwest Health Foundation, and what are your equity priorities?
Northwest Health Foundation is an organization with a vision for health and a focus on action. We believe everyone in Oregon and Southwest Washington should have the opportunity to lead a healthy life, and we strive to accomplish this vision through three primary avenues: grant making, community building and advocacy.
NWHF knows that our resources are best spent in the communities that face the biggest barriers to health, which is why we chose three equity priorities to guide our work: race/ethnicity, including immigrant and refugee status; geography; and physical, mental and developmental disability. Too often, where we’re born, the color of our skin or living with a disability determines our chance at a healthy life. Our commitment to promoting equity is a commitment to ending this reality.
Why is it important to NWHF to have disability as an equity priority?
When our board decided to make a commitment to equity, they took a hard look at the data and clearly saw that race/ethnicity, geography and disability were the clearest predictors of how healthy, or unhealthy, a person would be throughout their life.
How does NWHF help support organizations representing communities of people with disabilities?
To be honest, we haven’t done the best job supporting organizations representing communities of people with disabilities. We looked at our numbers a few years ago and discovered that, despite our commitment to disability as an equity priority, we only spent about $1.50 out of every 100 grant dollars in 2012 on grants to organizations representing people with disabilities. In 2015, we spent even less. That’s not okay. However, improving this percentage very soon will be hard, given we made 5-year commitments to a set of grantees for the majority of our resources a few years ago.
So, we’ve committed to deepening and building relationships with disability communities. Our board and staff are confronting our personal and organizational ableism and finding real ways to make change now. At our last two board retreats in 2015 and 2016, disability rights leaders led trainings and conversations with our board members and some staff. At all of our meetings we’ve begun the practice of asking attendees how best we can help them participate. As for communications, we’ve started including closed captioning in our videos and image descriptions on photos. We also created a budget for interpretation services. And, perhaps most importantly, we’re talking to currently funded partners about how they integrate inclusion of people with disabilities into their work.
Funders have a responsibility to make more grants to organizations led by and for people with disabilities, AND we need to find other ways to prioritize disability communities: in our organizational practices, in our physical and digital spaces, in the choices we make to fill empty board and staff positions, possibly in our advocacy work, and in other ways we haven’t even thought of yet.
Tell us about your Learning Together, Connecting Communities initiative. What was the purpose? How did you choose the organizations that participated?
When we realized how little we had been investing in disability communities, we decided to take immediate action. We selected eight organizations led by or engaging communities of people with disabilities, which became our Learning Together, Connecting Communities cohort.
Through Learning Together, we aimed to: learn more about efforts in Oregon and Southwest Washington that are engaging and led by people with disabilities; promote self-determination and build relationships among and with these communities; and use this process to inform NWHF’s organizational practices. Each organization in the cohort sent representatives to two gatherings, where we spent time conversing with and learning from each other.
The cohort was diverse in missions and perspectives. Some organizations were led by community members with disabilities, some incorporated community members with disabilities as part of a larger picture. Two examples: Autism Empowerment, which is led by people on the autism spectrum and/or their family members, with the goal of enriching and empowering the lives of people in the Autism community. But also, Native American Youth and Family Center, a larger organization, which sent representatives specifically from its Independent Living Pathways program – a program for youth aging out of foster care, many of whom experience learning disabilities.
One of the organizations that participated was Autism Empowerment. What have you learned about the autism community by working with an autistic-led organization?
I’ve learned that the autism community encompasses so many viewpoints and so much variation. There are members of the autism community that prefer to be called “Autistic,” and others that prefer “person with autism.” Different members of the autism community have different sensory sensitivities and accessibility needs. And, of course, members of the autism community have so many other identities as well, including racial and ethnic identities, gender identities—different personalities and talents, like anyone else. So, the most important thing I’ve learned is not to assume anything. Always ask what language a person prefers to use to describe themselves, as well as what they need to participate.
Tell us about your Striving for Disability Equity series, including the challenges and successes.
From the beginning of the Learning Together, Connecting Communities initiative, we knew we wanted to document and share everything we learned from it. At first, we thought we would write a boring old article and publish it in some academic journal. But then we thought, that probably isn’t going to reach our audience. We want our funded partners to read this. We want peer foundations to read this. We want the tone to be inviting and conversational, and we want people to feel like they can respond. So we published our Striving for Disability Equity series online instead.
Striving for Disability Equity is a series of four blogs published on Medium, in which we talk about recognizing our bias as an organization; describe the Learning Together, Connecting Communities initiative; and discuss the next steps we are taking to confront our ableism.
So far the four blogs have been read more than 1,250 times. That in itself is a success. We’ve also heard from peer organizations who have used the blogs to start thinking about and examining their own ableism. However, we’ve also had negative feedback. We’ve been criticized for reinforcing the power dynamic between able-bodied, able-minded funders and disability communities. We’ve been told our words don’t mean anything without action, which is true. It’s time for us to start acting.
People with disabilities, including autism, represent the largest minority group in the United States. Many funders include race/ethnicity and geography in their equity priorities, but very few include disability, despite disability crossing all socioeconomic lines. Why do you think that is?
I don’t know if I’m the best person to answer this question, since I’ve only worked at a foundation that prioritizes disability, and I’ve never been a part of choosing an organization’s equity priorities. But, if I had to guess, I would say it has something to do with most people seeing disability as a medical condition rather than an identity. I think most people see disabilities as something to be prevented or cured. A lot of money ends up going to medical research or equipment. So, when funders dedicated to social justice start thinking about their priorities, disability communities may not even come to mind. Fortunately, we’re starting to see a change. In the last few months, local funder Meyer Memorial Trust and national funder Ford Foundation both publicly committed to including disability communities in their equity work. I’m sure there are others I haven’t heard about, and I expect more will follow.
How is NWHF working with other funders to strengthen capacity in our region for disability-led organizations?
We’re in the beginning stages of this. Our leadership at NWHF has had some conversations with other funders. I know we’ll be asking leaders from disability communities in the region to collaborate with us. Stay tuned for more!
How do you think funders and the autism community can better work together?
I think that this weight should fall largely on the shoulders of funders. Funders have underinvested in organizations representing people with disabilities (and other communities too), and we need to reach out, build relationships, educate ourselves about disability communities and put our money where our mouth is. The autism community should keep applying for grants, take advantage of information sessions and other in-person events to put yourselves in front of foundation staff, set up coffee and lunch dates with program officers, ask for the accommodations you need to participate. Funders need to honor those requests for accommodations.
Is there anything else you’d like to share with our readers?
Just that we owe a huge debt to our partners in disability communities. We thank you so much for being teachers, leaders and champions in this movement. To learn more about NWHF and the work we do, please visit http://www.nwhf.org.
Laura Nash is Northwest Health Foundation’s Communications Coordinator. She identifies as having anxiety disorder and depression, and has thoroughly enjoyed the opportunity to learn from disability communities in Oregon and Southwest Washington through her work at NWHF. In her free time she reads, writes, paddles and enjoys the arts.
This article was originally published in the Winter 2016 issue of Spectrums Magazine.