As the recipient of a Ford Foundation grant in the 1960s, Hofstra University was one of the first universities to pride itself on being accessible. The rich history of student disability activism on our campus has contributed greatly to the development of disability rights legislation today.

The perception of disability has begun to shift toward a civil rights-driven model – that all people with disabilities are entitled to equal opportunities and are capable of the same as the non-disability community with reasonable accommodations. 

Before the passage of the Americans with Disabilities Act in 1990, however, people with disabilities were viewed as deserving of pity. Support for the disability community was characterized through charity work and creating ‘poster children’ that needed to be ‘saved.’ Invoking this framework helped people without disabilities feel good about themselves but simultaneously harmed the disability community even further. 

While this model has primarily been removed from societal institutions, the sentiment still holds strong in our culture. A prime example of this is the Muscular Dystrophy Association (MDA)’s annual fundraising Telethon, which has now returned to the spotlight after a six-year hiatus. 

From 1956 to 2015, celebrities such as Jerry Lewis championed each Telethon, with the event exploding into a legendary fundraiser regarded as the most successful in the history of television. However, in the eyes of disability activists, the Telethon caused more harm than good. The event was often characterized as helping to “save Jerry’s kids,” many of whom were adults with muscular dystrophy. The infantilization of adults with disabilities perpetuates the understanding that charity and pity from people without disabilities are required for their success. This perception also contributes to the staggeringly low employment rate for people with disabilities, at only 19.3% compared to 66.3% for people without disabilities. 

The charity model is also often conducive to ‘inspiration porn,’ a phenomenon best described as using people with disabilities as a commodity to help others feel inspired by the lived experience of those in the disability community through patronization. This results in a narrative that is self-serving for people without disabilities and insinuates that people with disabilities are ‘inspirational’ for simply existing – something that has been rejected by the disability community.

However, this year, Kevin Hart revived the MDA Telethon, which aired on Saturday, Oct. 24. Hart justified his decision by speaking to wanting to be a good role model for his children by giving back to the community. However, Hart has never done anything to associate himself with the disability community, rights or justice beyond the charity model. Being a good ally to people with disabilities is more than just throwing money at efforts to ‘cure’ or ‘save’ them. In 2020, we should know better and condemn these narratives altogether.

The money raised does not help make the lives of people with disabilities better. In fact, in 2019, all grants issued by the MDA went to medical research and diagnosis. The disability community has rejected the view of disability as a purely medical issue that must be ‘cured,’ but the rest of society hasn’t. People with disabilities want their accessibility and functional needs met, not money funneled into trying to ‘fix’ them while ignoring their legitimate financial needs and simultaneously humiliating them.

Disability activists are calling on the MDA to change the narrative around their programming from framing muscular dystrophy as ‘sickly children who need to be saved and cured’ to listening and respecting the demands of people with disabilities. #EndTheTelethon was started as a response to Hart’s revival, prompting thousands of people with disabilities to voice their experiences of the MDA Telethon’s harm, but the wishes of people with disabilities were steamrolled by Kevin Hart and his celebrity friends who joined, such as Michael B. Jordan.

It’s more than just the Telethon; the charity model has got to go.

With a legacy like that of Hofstra, we must take a stronger position in holding celebrities like Hart accountable for the harm they cause in perpetuating a narrative of pity and charity around disability and condemn organizations for continuing to ignore the voices of people with disabilities. As the sibling of someone with a disability, it is frustrating to watch the silence of people without disabilities, especially considering the enormity of intersectionality within the disability community.

It’s time to do better, and that starts with actually listening to people with disabilities.