FUNDRAISING WITHOUT THE FREAKSHOW: LESSONS FROM THE PERKINS GALA
On Thursday, May 4, I attended a gala at the Perkins School for the Blind, located in Watertown, Massachusetts. I had heard about Jerry Lewis's muscular dystrophy telethons, and read theoretical disability studies texts claiming that the centuries-old practice of putting disabled people on display to raise money is still alive in our own time. The gala wasn't theoretical—it was a clear example of a Victorian-era freak show, gussied up and sanitized. In addition, it revealed—rather than subverted—stereotypes about blind children.
The gala began with a performance by the Perkins Possibilities Chorus. I have spent many years working with teenagers, and that name is not one that they would ever choose for themselves. The name is also telling—students weren't permitted to simply sing for the sake of singing. Instead, their singing was meant to prove that thanks to Perkins, blindness poses no barriers, and everything is possible. The students' performance was a "valentine to Boston," a wholesome tribute to the city that "loved and protected them." It was also clear that the selection was designed to please the event's Boston-based corporate sponsors. The students wore T-shirts with Red Sox and Celtics logos, while everyone else was dressed in cocktail attire.
After the performance, two middle school girls—both photogenic and charming—talked about their plans for the future. One said she wanted to be a veterinarian; the other, a pediatrician. The only reference to blindness was a quip about how they needed to be careful to not go into the wrong patient's room. Blindness was reduced to an inconvenience to joke about, not a form of culture or a source of pride. There was also no mention of the discrimination these students would face when entering the work force—what the disability community refers to as ableism. However, later, when the graduating seniors shared their career aspirations, both in person and through a glossy promotional video, the gap between their desires and reality became more visible. One student said that he dreamed of being a radio broadcaster. His job after Perkins? Assembling First Aid kits.
Later, a high school student spoke about how technology allows him to be on an equal footing with the sighted. We learned how an IPhone can help a blind person produce music and become gainfully employed, but very little about the particularities of this student—nothing about what kind of music he likes, nothing about the frustration he experiences when imperfect technologies fail him—as if all that matters is his ability to contribute to a capitalist society through employment. The Disability Rights Movement has focused on fighting for inclusion in the workplace but only recently has it begun to examine how capitalism has defined what kinds of disabled people society considers valuable. Overall, the student speakers at the gala preached a message of inclusion, but it comes with a catch: its only deserving recipients are those who are employable, those who are complaisant in the face of discrimination, those who are willing to conform to normative and abled standards of productivity.
Shortly before dinner, a Perkins board member delivered a speech about her recent trip to the Balkans. "This is Nicolai," she said. "He asked if I would be his mother." She went on to explain how thousands of blind children, who were "smart and capable," spent their lives in orphanages, and that she had stayed up all night crying about Nicolai's "wasted life." The unspoken subtext was that the children in the Balkans had more potential than many Perkins students, almost all of whom are multiply disabled. The board member's ally theater is apparent here; her good intentions were overshadowed by her need to center her own voice in a way that is reminiscent of missionaries in colonial India and Africa. Similarly, when the emcee introduced two blind brothers who sang a hymn, he said, "The dinner on your plate was food for your stomach. What you are about to hear is food for your soul." The emcee's comment was an example of what we call inspiration porn: any instance where a disabled person's accomplishment is used to make able-bodied people feel better about themselves.
As is often the case, the ableism of this event hid behind absences. Only the least intellectually disabled students were invited. Videos had (sometimes vague) audiodescriptions, but none of the speakers described the pictures they referred to. Save for a brief snippet in a video, no blind adults spoke. For an organization that prides itself on its dedication to the blind community, this omission is particularly surprising.
I don't know what the answer is. Ideally, an institution like Perkins wouldn't exist, but both in the United States and globally, blind people are forced to go without much-needed services. From conversations I have had with Perkins staff, it seems that although Perkins is far from perfect, there is a discrepancy between how services are actually delivered and the school's public face: many teachers, houseparents, and other staff do innovative work that honors the autonomy of their blind and multiply disabled students, who live in a world that was not built for them. How can organizations like Perkins bring their fund-raising events more in line with these principles? How can these organizations position blind people, not as objects to be gawked at, but as deserving of dignity and respect? Surely, there is a way to convince donors to give their support without further marginalizing the very people they are attempting to serve. One step towards this goal would be recognizing the expertise of disabled adults and placing them in leadership positions. Another would be to design a gala program that celebrates disabled people's accomplishments, while also acknowledging the reality of our oppression. It is my hope that as words like ableism and inspiration porn slowly become mainstream, other disability organizations will begin to grapple with these challenges.