My wife and I are expecting a child and recently had our ob-gyn intake appointment at Massachusetts General Hospital. I’m a disability rights attorney. I was aware that many medical professionals harbor negative beliefs about people with disabilities. I was also aware that many prenatal patients are dissatisfied with how clinicians discuss disability. But I was surprised to discover MGH’s prominent use of the “R”-word in its online prenatal patient resources.
A page on chromosomal disorders states, “People with Down syndrome can have a wide variety of problems including some degree of intellectual disability — in the past this was called mental retardation. Most adults with Down syndrome are unable to live completely independently.”
The “R”-word emerged in clinical settings about a century ago but is now widely considered a slur. The term has painful connotations for people with intellectual disabilities, and advocates have successfully lobbied to end its use. “Arc” organizations rebranded in 1992, disowning what the “R” in their name originally stood for. But there were slower-moving institutions like the Massachusetts Department of Mental Retardation, which changed its name in 2009 to the Department of Developmental Services. In 2010, the “R”-word was stricken from all federal laws. Countless legal and medical organizations have followed suit, including the US Supreme Court in 2014 and the American Medical Association in 2019. Indeed, the term is no longer accepted within the medical community: A decade ago the vaunted Diagnostic Standard Manual definitively replaced the “R”-word with “intellectual disability.”
So why does MGH, a top-rated hospital and home to notable advocates for people with disabilities, go out of its way to place the word prominently for all its prenatal patients to see? Surely, MGH would not publish slurs once used to denigrate other social groups. Yet, to my further surprise, a simple Google search indicates MGH uses the word pervasively. You can find it used on its genetic syndromes, congenital hypothyroidism, childhood epilepsy, and learning disorders program pages. And, no, these are not cherry-picked archival materials from days of yore: They include recently updated patient guidance and descriptions of current programs.
Words may not break bones but they matter. A lot. The words we use reveal the beliefs we hold. Since time immemorial, negative attitudes about people with disabilities have motivated all manner of indignities, from oppressive eugenic regimes to ableist microaggressions. While some may bristle at overzealous political correctness, combating derogatory language is an aim common to many impactful social movements. And though changing the words we use does not guarantee that belief changes will follow, it’s a start.
As important, the wrong words can engender negative attitudes. Prenatal patients who may have little experience with disability are especially susceptible to their care providers’ cues. If providers present disability solely as a problem to be avoided, a risk to brace for, or a possibility to ward against, they prime patients to believe stereotypes routinely defied by people with disabilities. By emphasizing disability’s downsides, providers tell their patients only part of a rich and ever-changing story.
There are other ableist imprecisions in MGH’s prenatal guidance on Down syndrome. Who among us can say they don’t have a “variety of problems”? Who lives “completely independently”? And how many barriers to independence have much less to do with what people can in fact achieve than our own attitudes about them? My sister, who has Down syndrome and has been a “Spread the Word to End the Word” campaigner, would certainly have additional notes.
MGH would do well to follow the lead of other health care providers who deliver information to prenatal patients in more even-handed, respectful ways. More broadly, it should also consult the array of resources for health care professionals that affirmatively celebrate the beauty and human potential of people with disabilities. At minimum, MGH needs to update its Web content immediately.
Any provider’s use of the “R”-word today is unacceptable. It demonstrates a deep ignorance of and utter disregard for people with intellectual disabilities that undermines all the good that MGH otherwise does to serve and support this community. If nothing else, MGH’s apparent embrace of the “R”-word has damaged the trusting relationship that I, as would any patient, expect to have with a provider of care.
Hezzy Smith is director of Advocacy Initiatives at the Harvard Law School Project on Disability.