An open letter to Kevin Hart: Ableism needs to be “cured.” Not us.
- Oct - 23 - 2020
- Alma Silver, Associate, FDR Memorial Legacy Committee
An open letter to Kevin Hart: Ableism needs to be “cured.” Not us.
Dear Kevin Hart,
I write to you as a team member of the Franklin D. Roosevelt Memorial Legacy Committee, based in Washington DC. As an initiative of the National Council on Independent Living, our committee includes community members, historians, academics, politicians, disability activists, and business and nonprofit leaders across the country. Collectively, we strive to preserve the legacy of equality, opportunity, and dignity that FDR left behind as America’s first visibly disabled president. Our work centers on educating others about the underrepresented stories and voices within the disability community, especially the determined leaders of the grassroots campaign that successfully fought for the addition of a statue showing FDR in his wheelchair at the memorial in DC. We believe that the fight to authentically show FDR as a disabled president exemplifies the much broader fight for representation, autonomy, justice, and inclusion within the disability community.
I also write to you as a fiercely proud disabled woman. I was born with cerebral palsy, and my disability is paramount to my identity, my passions, my endeavors, my dreams, and my ways of interacting with the world around me. My disability has driven me to pursue the advocacy work that I love, and in doing so, form lasting connections with people who share similar journeys of discovering their identity outside of traditional norms and expectations. Yet even as my disability brings richness and beauty to my life, I cannot deny the exhaustion that arises as I navigate a society laden with ableist attitudes and systemic barriers. Frankly, the announcement that you will be hosting a reboot of the Muscular Dystrophy Association’s fundraising telethon brought about one of my deepest moments of exhaustion as of late.
I do not live with Muscular Dystrophy, and thus I cannot speak to the experiences of that specific community. But the exploitative legacy of the MDA telethon, cemented by the extravagant antics of comedy icon Jerry Lewis, leaves behind a painful mark throughout all sectors of the diverse and multi-dimensional disability community. I speak on behalf of the FDR Memorial Legacy Committee in saying that we ardently condemn any fundraising telethon that exploits people with disabilities, particularly young children with Muscular Dystrophy, as pity-inducing marketing tools used to solicit monetary donations.
I understand that as an entertainer, you are likely hosting this rebooted MDA telethon with the intention of allying with the Muscular Dystrophy community and supporting a cause that you feel deserves greater attention and mobilization. Additionally, I do not intend to undermine the importance of researching and developing specific treatments, which hold the potential to enhance the lives of people born with certain forms of neuromuscular diseases. Rather, I want to call your attention to the grossly exploitative persuasive appeals used within nationwide telethon fundraisers. Such emotionally saturated images and stories reduce children with Muscular Dystrophy to pitiful objects, thus glorifying “curing” disabilities as the only pathway toward a meaningful life.
As the decision has already been made to reboot the telethon and carry the legacy of this widely recognized event forward, I urge you to approach this event with a compassionate and respectful regard for the complex human lives that you are working with, which is something that your predecessor never showed. I urge you to recognize the inherent value, meaning, and fulfillment that a disabled life encompasses, even as such a life remains perceived by the non-disabled majority as something broken that needs to be “fixed” and “cured.”
In his exhaustive efforts to manipulate understandings of disability and tug at the heartstrings of American viewers, your predecessor callously wrote that his treasured “Jerry’s kids” living with Muscular Dystrophy were burdened with living as “half a person.” Past MDA Telethons overtly framed disabilities as “curses” and wheelchairs as “steel imprisonments.” Unfortunately, this emotionally exploitative rhetoric echoes all too familiarly, even beyond the Muscular Dystrophy community. Growing up, I learned to respond to the pity and sorrow that would arise on people’s faces as I entered the room, and I found myself repeatedly labeled as a girl “afflicted with cerebral palsy” and “confined to a wheelchair.” Early on, I questioned my parents as to why strangers would ask “What is wrong with her?” as I moved alongside my family in public spaces. I interacted with strangers who spontaneously knelt to pray that God would heal me, who felt the need to reassure me that I would one day be “free to walk again.”
Events such as the MDA Telethon only serve to embolden this culture of saturated ableism, which celebrates “curing” all forms of disability and conforming to non-disabled standards of happiness. While such fundraising spectacles aim to strategically elicit pity and self-gratification among non-disabled viewers, the disability community continues its collective and relentless fight for equality, representation, and inclusion. And our fight is nowhere near over.
America remains to be the only industrialized nation on the planet without equitable access to universal healthcare. According to a 2017 report by the National Council on Disability, people with disabilities live in poverty at more than twice the rate of people without disabilities. We are in the midst of a pandemic that has compelled the U.S. Office for Civil Rights at the Department of Health and Human Services to open cases against states with “crisis of care” guidelines. (These policies have explicitly stated that people with significant physical and intellectual disabilities will receive lower priority access to ventilators in the event of medical shortages caused by the pandemic.) And just this past month, the Texas Board of Social Work Examiners voted unanimously to remove protections against discrimination, granting social workers the liberty to turn away clients who identify as disabled and/or LGBTQ+.
As diverse sectors of the disability community reconcile with layers of injustice and seek the most equitable path forward, the time seems strange to host an event focused on exploiting disability as a tragedy and glorifying the search for a “cure” that most of us, with a wide variety of disabilities, ardently reject. Mr. Hart, I urge you to think about the purpose that drives your fundraising endeavors, and I urge you to consider whether the voices of those you are claiming to help have truly been heard and understood.
We are not broken. We do not want to be “cured.” We want ableism to be fixed and erased - not our disabilities, not our identities. We want society to look differently. We want monetary investments into accessibility, universal design, and structural changes, not misguided “research” that falsely claims to represent the needs and desires of an entire community.
To all of us at the FDR Memorial Legacy Committee, the statue of FDR in his wheelchair represents a pinnacle of strength, determination, resilience, and empathetic leadership. It is our hope that such disability narratives rise even further within the forefront of our nation’s consciousness and inspire connection, growth, unity, and change, especially in these recent trying times that we have undergone as a nation. We invite you to join us in this work and centralize authentic disabled voices, stories, and perspectives as you work to be an ally for our infinitely vibrant community.