“Nothing about us without us is for us,” Belfastology, Allan Leonard

Charity to people with disabilities goes back to Biblical times, but philanthropy involving meaningful input from those served is a recent phenomenon. The demand for “nothing about us without us” is core to the ethos of the disability rights movement. Major civil rights legislation for the one-in-five of us with disabilities—the Americans with Disabilities Act—is only 30 years old. When thinking about accessibility, we’re starting to consider more than ramps and bathrooms, like information access and attitudes like who should be at the board table.

Here’s a checklist for you to consider with reference to your favorite nonprofit organization and its board, followed by suggestions and reflections on attempting to “do good” better. I offer them from the perspective of a white cisgender aging woman with disabilities who has been a volunteer and a board member for several nonprofits.

Is Your Organization and its Board Access Able?

  • Are your facilities accessible?
    • Wheelchair access throughout the facility?
    • Website, newsletters, emails, etc. usable with screen readers?
  • Are your customers, volunteers, staff, and board representative of all people?
    • 20% have disabilities
  • Do your board and staff receive training about disability as diversity and ableism?
  • Is disability part of your DEI work or just an afterthought?
  • Are your programs and materials accessible to:
    • Deaf and hearing-impaired people?
    • Wheelchair users?
    • Blind and low-vision people?
    • People with cognitive issues?
    • People with sensory issues and/or autism?
  • Is accessibility advertised? If not, consider adding the following to all publicity: “If you need disability accommodations, please contact X two weeks before the program and we will attempt to meet your accommodation needs.”
  • Does your planning process include consideration of access issues and their funding?
    • Where’s the money coming from to make disability accommodations?
  • Are access issues mentioned in your fundraising?
    • Have you consulted your local Center for Independent Living for advice about how to make and fund disability accommodations as inexpensively as possible?
    • Have you consulted the library’s grants and foundation databases for sources of funding?

Recently I joined the board of Benetech, a software for social good nonprofit located in Silicon Valley. One of their main products is Bookshare, a collection of almost a million e-books for blind and other print-disabled folks. I’ve relied on books from Bookshare for my professional work as a clinical psychologist, as a writer needing to know what’s out there in my genre of memoirs, and as a retiree joining as many book clubs as I can find and glorying in recreational reading. It’s my joy to be able to support the organization financially but also to bring to board discussions the perspective of someone with lived experience of information access barriers. As a political operative friend of mine used to say, “If you’re not at the table, you’ll be on the menu.”

A board member with disabilities may bring to the board flexibility, knowledge of access solutions, a high level of motivation to be a contributing member of the board, and interdependence/working-together skills. Some of the disability accommodations we need, like electronic copies of handouts ahead of time, may prove to be useful for all board members so they can think about issues before the meeting. Because of the pandemic, we’ve seen how much more business and how many more meetings can be conducted remotely. This enables people with disabilities, who may have transportation or other issues in attending in person, to be full participants.

In addition to the usual steep learning curve of joining any new board, with its cast of characters, informal board norms, and lingo, I have had to articulate my access needs. I ask for information electronically ahead of time instead of relying on the presenter of a PowerPoint to read it aloud as they present it. The software the board uses is somewhat accessible, but not completely. For example, we have had to figure out how to get me information such as what folks are saying in the Zoom chat, which I can’t listen to at the same time as I listen to people talking at the meeting. I need people to say their names when they speak, at least for a couple of meetings, so I can connect them to their voices in my aging brain.

Staff and board members on boards I’ve joined are willing to make these accommodations, but at times they are awkward and forgetful, just like anyone exercising new skills. I always look forward to when we get beyond board members verbally pointing out that they’re accommodating me—as in “Kathie, I’ll read this out loud for you”—to just doing it. It usually takes a few meetings to get to the point that I get a laugh when a speaker says, “Can everybody see line 3…” and I say “No.” I also hope to develop robust enough relationships with board members and staff to not have them feel the need to apologize profusely for a misstep. I’d rather just point it out, have them say “oops,” acknowledge the discomfort, and then go on to try it differently. I know from my previous 72 years of life experience as a blind person in a sighted world that we’ll usually get to comfortable interactions, but it will take time and work from both the sighted and blind sides of the interaction. My hope is that it’ll be easier for the second person with a disability who joins the board. If that’s true, the hard work will have been worth it.

I’ve found very few board members have much experience with people with disabilities. I often experience unintentional ableism in word choices like “that’s lame” and “blind to the facts.” People say things like “I don’t think of you as disabled”—meant as a compliment. For me, it’s a balancing act to decide when to educate about ableism and microaggressions (like not providing materials ahead of time even when asked repeatedly to do so) and when to just let it slide. I will work to get the board to consider board and staff training on ableism and to have another person with disabilities join the board so I’m not the only one doing the educating and representing “the disabled.”

Eventually, I hope board members think about access and universal design, and question themselves about who’s not at the table and why, wherever they go. When we evolve beyond just providing lots of books for lots of print-disabled folks and progress to those deep discussions of what information is needed and how technology can help provide it, we’ll be advancing equity, diversity, and inclusion in real ways on the board and in life.

Here are a few more action steps boards can take:

  • Get started becoming more “access able.” At each board meeting, take one point from the checklist at the beginning of this article and discuss it for ten minutes. End the discussion with an action and a set time to complete that action.
  • Look for board members with disabilities to fill board openings. If you don’t know any suitable people to ask, ask friends or acquaintances with disabilities to recommend people, or ask presidents of local disability organizations for nominations.
  • Educate yourself about accessibility. For further information, consider checking out some of the following resources:
  • Listen to podcasts like Power not Pity and read books like the New York Times’ book of essays, About Us, edited by Peter Catapano, or Alice Wong’s anthology Disability Visibility to learn about the lived experiences of the one out of five of us who have disabilities.

See you in the boardroom!

Katherine Schneider, Ph.D. is the author, most recently, of Hope of the Crow: Tales of Occupying Aging. She blogs at http://kathiecomments.wordpress.com.