In response to flagging of term, MGH will review all of its patient education materials
In health care, words matter. They can reassure the worried, comfort the distressed, and inspire those in despair. Our words can build strong, trusting relationships with our patients. Or, if misused, our words can cause harm and disenfranchise those who depend on us to care for them in a way that acknowledges their dignity and empowers their spirit. This is why we were so disheartened to read of Hezzy Smith’s experience relayed in the Feb. 6 op-ed, “MGH’s ‘R’-word problem.”
Smith and his wife are expecting their first child, and Smith described seeing the “R”-word in our digital patient education materials. For people living with Down syndrome and other conditions, that word evokes painful emotions and feelings of otherness. While historically this word has been used to describe individuals with intellectual disabilities, today we know the term for what it really is: a label. It is with painful appreciation that we thank Smith for pointing out the simple fact that we need to do better, in our actions and in our words. At Massachusetts General Hospital, we strive to ensure that all those who come through our doors feel welcome, valued, and appreciated. With this oversight, we fell short of those ideals. We are doing a thorough review of all of our patient education materials and are removing any references to inappropriate and outdated terms.
In addition to daily challenges faced by individuals living with disabilities, systemic prejudice and unseen barriers are added obstacles. Unfortunately, the health care system is not immune to this sad reality.
We reaffirm our commitment to uphold our values, exemplify our ideals, and provide compassionate empathetic care to all our patients. In cases where we don’t meet these goals, we will redouble our efforts.
Dr. William Curry, chief medical officer, Massachusetts General Hospital
Dr. Jeffrey L. Ecker, chief, obstetrics and gynecology, Massachusetts General Hospital
Dr. Elsie Taveras, chief community health and health equity officer, Mass General Brigham
Zary Amirhosseini, manager, Mass General disability program
Former head of association once told a judge: ‘Your honor, the correct term is intellectual disability.’
Hezzy Smith’s op-ed, “MGH’s ‘R’-word problem,” is timely and important. When I was the president of what was then the American Association on Mental Retardation, I commissioned a new definition and classification manual with the specific instruction that it remove the term mental retardation and replace it with intellectual disability. Just to be sure, I appointed myself to the committee writing the manual, which was eventually published in 2010. This work also led to changing the name of the organization to the current American Association on Intellectual and Developmental Disabilities. After much advocacy, we and others persuaded the DSM-5 authors to follow our lead in the Diagnostic Standard Manual they published in 2013.
Smith is right: There is no excuse anymore for anyone to use the “R”-word. I was testifying as an expert witness in court once when the judge used it. As I recall, I said, “Your honor, the correct term is intellectual disability.” If I can correct a judge, then anyone can speak up and correct those who persist in using the “R”-word, even at a world-famous hospital.
Dr. David L. Coulter