How Disability Mega-Charities Lose Their Way
Every Thursday afternoon, I pick up my son at school and drive him to the Easter Seals of Dupage County, in the Chicago suburban area. The nonprofit organization, which assists more than 1 million children and adults with disabilities and special needs, has done much to support my son. He’s been going to our local center for years, and likes to walk down the halls touching the blown-up pictures of other disabled children swimming, climbing, hanging out with their families, and otherwise celebrating their achievements. Around us, children and young adults, accompanied by family members, head in and out of therapy rooms providing all sorts of vital services, such as speech, occupational, physical, developmental, and eating therapies. Along the long hallway, children with cerebral palsy will often work on their mobility, assisted by crutches, braces, harnesses, or bikes.
At the end of the hall, we find the assistive and adaptive technology therapist. Through the means of a complex speech app, downloadable to any tablet, they are helping my son learn to communicate with strangers. While his family, friends, and teachers understand his combination of words, jargon (word-like sounds), and signs, we want to make sure that someday he can pull out a cellphone, open an app, and communicate anything to anybody. Easter Seals of Dupage County is a world-class facility, hiring dedicated and skilled professionals, and we feel lucky to be able to send our son to such a place (and that our health care covers it).
Alas, all my good feelings evaporated on May 3 when Easter Seals announced their new logo. The press release revealed problems not just with Easter Seals, but with mega-charities in general. Easter Seals has adopted rhetoric on disability that portrays it as an individual medical problem to be solved — a move that, unfortunately, is not uncommon. Organizations like Easter Seals routinely adopt corporate principles that end up distancing them from the people they allegedly serve.
There are other problems with the press release, too. Randy Rutta, CEO and president of Easter Seals, concluded it with the following statement: “We have a bold vision for the future, a vision where we all — people with autism, veterans, caregivers — have the opportunity to thrive and fully participate in our communities nationwide.”
Why single out just those three groups — autistic people, veterans, and caregivers? I notice my son, a young boy with Down syndrome, isn’t on that list. Does Easter Seals think they are serving me (a caregiver), but not him? Are disabled adults who aren’t veterans not in the mission?
Worse, the release reveals a new tagline, “Join us as we take on disability together,” which perpetuates the damaging, and pervasive, idea that disability is the enemy, something to take on.
Sandy Ho, who describes herself as an Asian-American disabled woman, and a member of the Board of Directors for Easter Seals Massachusetts, shared a letter she wrote to Rutta. She wrote:
“From my perspective, as a proud disabled woman, the new tagline, ‘Taking on disability together,’ jeopardizes the integrity, values, direction, and mission that is at the heart of all Easter Seals work and its fight for equal opportunities for people with disabilities. The face of disability is now a narrative of success, empowerment, inclusion, community, and the understanding that disability is a social identity . . . Easter Seals, as a long-respected organization and brand with deep roots in disability awareness now finds itself at a crossroads. The organization can either join in the direction that the disability community, and the times are moving in — or it may risk falling back, and at worse obstructing the movement forward in the fight for equal rights.”
This idea of disability as disaster isn’t new to Easter Seals. Catherine Kudlick, director of the Paul K. Longmore Institute on Disability and an expert on the history of Telethons, told me, “Through its annual telethons, Easter Seals helped many families get much-needed equipment and services. But it came at a price: To raise money, the programs promoted the idea that people with disabilities were victims of tragedy and childlike, pitiful, helpless.”
As Ho writes, the disability movement itself is transforming. Decades of work by activists have shifted the focus to self-advocacy, intersectionality, and centering the voices of disabled individuals. Drawing from the lessons of other rights movements, many people claim disability as a core aspect of their identity, not a problem to be solved. The rise of new media and assistive technology has made it possible for more and more people from within disability communities to speak for themselves, removing the need for mega-charities to act as gatekeepers or mouthpieces.
This movement has further widened the chasm between the leadership of disability charities and those actually served by them. One of the most egregious examples of this is Autism Speaks, which has come under fire for not having a single person actually with autism among its executive leadership team, and for advocating for a “cure.” Critiques of the Cerebal Palsy Foundation’s “Just Say Hi” campaign also come to mind.
Easter Seals — at least their lofty leadership — also seems to have missed the memo on what’s happening within the movement. Instead of listening to those it serves and using inclusive language, corporate culture produces this risible statement: “There are 55 million Americans living with a disability, millions who we could be helping with a more clarified brand.” That might help with fundraising, but a clarified brand has, I think, never helped any marginalized people become less marginalized.
So what is the mega-corporate charity to do, if it wants to become more connected to the people it allegedly serves? As Ho suggests, it’s important to embrace “nothing about us, without us,” and to make sure that there’s no gap between who you serve and who you are.
Thanks in large part to Twitter and other social media, this has never been easier to do. I spent some time reading through @Easter_SealsCEO, Rutta’s personal account. I see Bob Dole, Rosalyn Carter, thank-you tweets to corporate sponsors and other organizations, and of course links to his own writing. I’d recommend instead that he spend a lot more time on hashtags like #CripTheVote or #FilmDis (on disability and media representation), in order to understand and include the vibrant, diverse community that is taking advantage of the accessibility of social media to make their opinions known.
Just listen. Then connect. Ask questions and find out what it is that disabled people really want, then try to do that. That’ll be far more clarifying than any brand.
Lead image: flickr/Jack Zalium