Senator Chuck Schumer has been under fire this week after using an offensive and outdated term to describe children with disabilities. He used a word many people have heard before - but may not realize how damaging its use is to the disability community.
WARNING: A warning to our listeners/readers, this story does contain the offensive language in order to explain the history and background of its use.
Schumer used the world when he was a guest on the podcast OneNYCHA on Sunday. In a wide-ranging conversation, he and the hosts began talking about housing efforts for marginalized populations. When describing a group home for children with disabilities for whom he had advocated in the 1970s, Schumer used a word that has long been considered an ableist slur.
“When I first was Assemblyman, they wanted to build a congregate living place for retarded children. The whole neighborhood was against it. These are harmless kids. They just needed some help," said Schumer.
Most of us have heard the word "retarded" used before. For the disability community, it cuts deep - the word has a history many aren’t aware of, tied into the restriction or denial of rights for people with disabilities.
Dr. Andrew Marcum is a program coordinator at the Center for Self Advocacy in Buffalo, and teaches disability studies at the City University of New York.
“When Schumer used that word, all I can think of is how counterproductive it was, you know, that he was trying to talk about helping people and yet he was dehumanizing them at the same time, it's very self-defeating.”
Marcum explains that when people with disabilities began getting out of institutions in the 70s – around the time Schumer said he was advocating for housing – activists asked for the word “retarded” to be retired.
"When self advocates, people with intellectual disabilities first started getting out of institutions in the 70s, one of the first things that they made a campaign was please stop calling us retarded. Please stop dehumanizing us with the word retarded. We don't want you to use that word anymore. Because we're not retarded. We're human beings just like you because just because we experience the world differently, process information differently, speak differently, doesn't mean that we are slow, doesn't mean that we, we are hindered. We're hindered by your attitudes and by the structures of society, not by our disability," said Marcum.
The word originates from the medical world and is tied into the medical model of disability – the idea that people with disabilities are somehow "limited" because of a diagnosis. But the activists Marcum described look at disability in a different way – through the social model, which is the belief that rights and access for people with disabilities are restricted by societal perceptions and systems, not a diagnosis. This shift in perspective is where a lot of activism efforts are rooted in, including those to change the language people use.
And while it’s been 50 years since people first started calling for the change, it was only officially recognized 11 years ago by the United States government. A bill named Rosa’s Law, signed during the Obama administration, replaced references to “mental retardation” with “intellectual disability” in federal law.
Rebecca Cokley is the US Disability Rights program officer for the Ford Foundation, but worked in the White House when Rosa’s Law was passed. She remembers hearing the word used in almost every bar in Washington, D.C. at the time.
“It's so offensive, you know, it was part of the justification for the sterilization of people with intellectual disabilities, the education and employment segregation of people with disabilities and, frankly, the institutionalization of people with intellectual and developmental disabilities," said Cokley
She also felt that in particular, the use of the word by Schumer shows where the US still stands in terms of how people with disabilties are treated.
"It shows us, you know, how far we still have to go and how, frankly, we're, people with disabilities, let's be really specific, people with intellectual and developmental disabilities, are not seen as equal or deserving of respect by our nation's leaders," said Cokley.
Cokley and Marcum agree that in order for real change to happen – people need to understand the perspective, history and culture of the disability community. Cokley recommends people take time to look inward and do research for themselves.
“As a person with a disability, I think so many times we're forced to be self-narrating zoo exhibits, is the term, like we're forced to do all of this education of the non-disabled public to make lives better for us, to make it easier for us to live in the world. And at a certain point, I think it really is on the non-disabled public to pick up a book to use Google and to educate themselves because we've been doing it since, you know, the dawn of time, and frankly, it's exhausting," said Cokley.
Schumer’s spokesperson issued a statement to Politico, saying the Senator is “sincerely sorry for his use of the outdated and hurtful language.”
But Marcum adds that going forward, action has to be taken by everyone to talk about disability and connect with the disability community in order for real change to happen.
“Talk to those people, build community within, go to community forums where they're at advocating, learn about what the issues are that people with disabilities are dealing with and educate yourself. And that will give you a lot more confidence to be able to engage in conversations in a way that's very helpful instead of hurtful.”
Some resources that Marcum and Cokley recommended to learn about disability:
