Getting Disability Wrong

We’re more than three years into our equity journey at Meyer Memorial Trust, and people assume we have it all figured out. We don’t.

When I got here in 2002, Meyer was a small organization with all-white leadership and a mostly white board of trustees. Today, I’m lucky to lead a very different organization of nearly 40 employees, half from historically marginalized populations. All but one of our trustees identifies as non-white; our leadership team is mostly women, and more than half of the team are people of color.

“How’d Meyer do it?” our colleagues in philanthropy want to know.

There is no easy answer — a topic for a future blog, perhaps. I’ve learned enough about equity work to know that it is not something you nail down in a few short years. Not by a long shot.

Two and a half years ago, Meyer staffers who were putting the finishing touches on our Equity Statement added a final paragraph that has proven true more times than I can count. We wrote:

As we redouble our effort to make this mission a reality, we expect it will be uncomfortable at times. We do not have all the answers. We will make mistakes. This work is worth it. Our shared future is at stake.

Meyer has gotten a lot of recognition for being one of the larger foundations in our region to commit to using the privilege of our endowment to do something about the inequities at the root of systemic and institutional problems. We have worked consciously as an organization and as individuals to step past good intentions, to take on the sometimes bruising work of fighting bias and oppression — in ourselves, in our communities and in our work.

We promised, in our Equity Statement, to consider the ways “race, ethnicity, national origin, gender, gender identity, sexual orientation, class, ability, geography, age and other forms of bias and oppression are embedded within the institutions and systems in our community, within Meyer Trust, and within ourselves.”

Without even realizing it, our equity declaration hurt and angered people and organizations who battle daily against ableism, a form of oppression I knew too little about.

Stephen Marc Beaudoin, executive director of PHAME, a Portland-based nonprofit that focuses on individuals with developmental disabilities, was courageously critical of our terminology and our — frankly, my — ignorance.

“Why, Doug, does [Meyer] deny existence of the word disability?” he asked in an email in April. “This is deeply unsettling to me, and to colleagues in the sector that I speak with.”

Our equity statement is a declaration of our belief that dismantling barriers to equity helps to improve community conditions so that all Oregonians can reach their full potential. The work is essential to accomplish our vision of a flourishing and equitable state. But by using the term “ability,” Stephen said Meyer was ignoring people with disabilities and their contributions.

Listing grantee organizations Meyer has supported, including PHAME, United Cerebral Palsy, NW Down Syndrome Associate, FACT Oregon, Community Vision, Albertina Kerr and Incight, Stephen wrote that “no organizations in Oregon who serve people with disabilities refer to the people we serve as “people with abilities.”

He was right.

I want to own up to this mistake — and to fully acknowledge Meyer’s determination to get it right.

While it was true that our program staff avoided the mistake of using “ability” to signify “disability” in grant applications, I personally did not fully understand the difference. Ignorance isn’t a shield, it is a boulder the ignorant must push aside and step beyond.

Stephen’s critique has set me, and Meyer, onto a fresh equity journey.

If you’ve read my occasional blogs, you’ll have heard me discuss how Meyer began studying racial equity in 2012, including the ways racial and structural inequities limit opportunities and hold some Oregonians back. We began delving into equity about LGBTQ issues earlier this year. We continue on both tracks. But until this spring, it had been years since we made disability a focus of conversation at Meyer.

So we began researching the topic. As with the language surrounding race and ethnicity, the language and terminology around disability are constantly evolving. The many equity conversations we engage at Meyer and with our partners make clear how imperative it is to use the correct wording. Intention is imperfect, but we can strive to use words that are less so. Terms may evolve but the need to respectfully use language that includes and supports people who have historically faced disparities is paramount.

Since Stephen brought Meyer’s error to our attention, we have searched through early drafts of the Equity Statement for clues to how we chose the language, since it did not appear in our demographic, grant-related or operations documents.

We researched how others in philanthropy discuss disability, and the language used most often by organizations made up by and representing people with disabilities. We met and spoke with leaders and advocates for people with disabilities in Oregon and across the country to help guide us, including Sharon Waschler, a writer, longtime disability-rights activist and service-dog trainer from rural Western Massachusetts, who has given a lot of thought about terminology around disability.

“I know that the letters ‘a-b-i-l-i-t-y’ are contained in the word ‘disability’, but the etymology of the word and its meaning as a social construct are not the same thing. … Not including ‘disability’ in a direct and clear way usually results in PWDs (people with disabilities) shouldering the onus of awareness and inclusion.”

People with disabilities, whether visible or invisible, shouldn’t have to shoulder the onus of awareness and inclusion. That’s Equity 101.

So Meyer is — and I am — learning.

Even as Meyer begins exploring how bias and oppression impact people with disabilities, others in philanthropy have taken bold moves to focus attention on the culture and study of disability. Our partners at Northwest Health Foundation began comprehensive learning around disability in 2014, with a goal of helping to build the organizational infrastructure of 501(c)(3) and 501(c)(4) organizations led by persons with disabilities for people with disabilities.

Just this week, Ford Foundation CEO Darren Walker acknowledged making an embarrassing mistake when Ford, the third largest foundation in the country, overhauled its programs to focus on inequality without “meaningfully considering people with disabilities.”

“I am personally privileged in countless ways — not least of which is that I am able-bodied, without immediate family members who have a disability. In my own life, I have not been forced to consider whether or not there were ramps before entering a building, or whether a website could be used by people who were hearing or visually impaired,” Darren blogged on fordfound.org. “In the same way that I have asked my white friends to step outside their own privileged experience to consider the inequalities endured by people of color, I was being held accountable to do the same thing for a group of people I had not fully considered. Moreover, by recognizing my individual privilege and ignorance, I began to more clearly perceive the Ford Foundation’s institutional privilege and ignorance as well.”

His words articulated what I’ve been thinking about since Stephen’s email popped into my inbox.

I have started to pay closer attention to issues and news related to people with disabilities, particularly close to home.

Roughly 747,000 Oregon adults have a disability, a little more than a quarter of the state’s adult population in 2008. Disability becomes increasingly common as people age, from 15 percent of Oregon adults up to age 39, to 47 percent of adults over age 80. And disability often accompanies other disparities, including economic disparities, with about half of people with disabilities in Oregon living on a household income of less than $35,000.

I learned that people with disabilities experience violent victimization at rates three times higher than people without disabilities, and for people with cognitive disabilities, rates are even higher. I’ve discovered that beyond just a term, disability is both a shared social identity and a political status. I’ve gained fresh respect for the concept of People First language. This fall, University of Oregon students for the first time could pursue a Minor or a Graduate Specialization in disability studies as part of their degree programs.

I just finished reading a book by Michael T. Bailey, past president of the National Disability Rights Network as well as Disability Rights Oregon. Here To Stay chronicles our country and our state’s historical failure to recognize that disability is natural, and it catalogs the systematic exclusion and silencing of voices of people with disabilities. Even as a longtime Oregonian, I was not aware of all the deplorable conditions heaped on and encountered by people with disabilities here. I want to be part of changing that arc.

Meyer’s communications style guide was created in an era when the People First movement was gaining steam. Our communications team has updated it to keep our staff and trustees in tune with the language of multiple areas of equity: how we speak about race, ethnicity, gender, sexual identity and class.

Now it reflects our learning around disability, learning we have only just begun.

Doug


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  • Larry Howlett

    Although the mea culpa, cultural humility is admirable & long overdue, why is that when an apparent white person (correct me if I overlooked Stephen’s other racial-ethnic identity or identities), calls out MMT kyriarchy, Stephen, and the cultural identity the organization represents, gets a thoughtful and respectful apology? When a #CBMA hapa does so, he gets dismissive retorts or silence? For instance, do you recall earlier blog responses from our “A Provocative Question About Equity” discourse and follow-up (the latter which MMT never responded to other than to drop the conversation thread)?

    In the spirit of your open invitation even for critical comments, I welcome your response.