(Narrative profile in embedded clip begins at 1:08)
Popular charitable telethons during the late twentieth century created a particular view of disability, one that activist Paul Longmore claimed to be “hegemonic in creating attitudes and ideas about disability” (2005, 502). Telethons routinely framed people with disabilities as passive, abject, and noncontributing members of society, and encouraged patronizing responses from a presumed nondisabled viewing audience. Specifically, the Muscular Dystrophy Association (MDA) Labor Day Telethon and its long-time host, Jerry Lewis, emerged from this time-period as symbols of disability oppression.
The MDA eventually split ways with Lewis and re-branded a shorter version of the telethon to the more upbeat Show of Strength. The Show of Strength took a more subtle approach to pity-centered fundraising that I term "acceptable paternalism," or a strategy that puts people with disabilities into an environment—such as a family home--in which paternalistic actions and attitudes are socially appropriate.
The above clip provides an example of acceptable paternalism. Toward the end of the narrative profile, Kasey’s mom expresses concerns about what her son “can’t do” and her own feelings of helplessness. Her statements provide an emotional punch that primes the audience for action (i.e., to donate). I don’t doubt the sincerity of her feelings, but remain concerned about the cumulative effect of such discourse on the lives of people with disabilities. Given the history of telethons in the oppression of people with disabilities, how are contemporary audiences to interpret the heartfelt and emotional testimonies of parents who are appealing to audiences to support an organization’s mission?
“Acceptable” or not, such paternalistic discourse reiterates the sentiment that disability is primarily a burden. It limits society’s understanding of disability and makes it difficult to express complexity—embodied understandings, intricate needs, real capabilities, and wide options for living. Acceptable paternalism follows a long line of charitable fundraising tactics that “erase” the experiences of people with disabilities (Barton, 172).
Fundraising tactics that tug on heartstrings raise a lot of money, over $56 million in 2014, but they don’t advance goals in the disability rights movement that include the reformation of an ableist society and the affirmation of disability culture. Acceptable paternalism leaves sympathetic nondisabled viewers feeling powerless in the presence of disability. For true justice to be done, we need varied and reflective discourse on the complex experiences of disability, and we need nonprofit organizations to prioritize this discourse in its communication with the public.
Barton, E. L. (2001). Textual practices of erasure: Representations of disability and the founding of the United Way. In J. C. Wilson & C. Lewiecki-Wilson (Eds.), Embodied rhetorics (pp. 169–199). Carbondale: Southern Illinois University Press.