Lately we’ve been sorry to see that the language in some of the media pieces we’ve featured on our Facebook page has made some of our friends uncomfortable and angry. We want you to know that we share your chagrin when terms like “affliction” or “suffering” are used in these articles and headlines to describe people with Down syndrome — people we know to be living happy, fulfilling lives, in fact, and certainly not “suffering” from anything.
There’s also been concern about the use of “Down’s syndrome” instead of the U.S. standard, “Down syndrome,” a difference in usage that appears to be regional. The articles we highlight that employ this term, which we understand to be unacceptable in American parlance, appear in publications originating from overseas, where “Down’s syndrome” is still the common term, and does not seem to carry any stigma — an interesting linguistic phenomenon.
Finally, there are instances in which words like “dysfunction” or “failure” or “abnormal” are used — words that may be acceptable in one context but would be frankly outrageous in another. In the articles we feature, these terms are used in the clinical sense, as a dry descriptor of aspects of a neurodevelopmental condition: a cognitive dysfunction, a failure of certain neurons to behave as they might be expected to, an abnormal response to stimulus. We do not and will never countenance the characterization of a person using such terms, but we understand that they have a legitimate application when talking strictly about research.
We want to stress that when terms like that appear in plus15’s Facebook feed or in articles we may highlight here, they are direct quotes from the material we’re featuring. We feel strongly that using respectful person-first language is an imperative, and in the communications we create ourselves, we’re committed to using terminology that accurately and positively reflects the reality of people with Down syndrome and their families. Like you, we’re frustrated when we see the perpetuation of outdated, hurtful stereotypes through careless use of language.
We are also, however, committed to providing a conduit to relevant news about Down syndrome and cognition research — sometimes, unfortunately, that valuable information comes couched in terms that might give us pause. We try to weigh the discomfort such language might provoke against the value of the information we’re providing, and we always consider the overall intent behind the articles in question. (Needless to say, you will never see an article here where pejorative terms are used with intention.)
We hope the research news we highlight is intriguing and inspiring enough to energize you even in the presence of awkward wording or tone-deaf headlines. We encourage you to voice your opinion about language that devalues the positive aspects of living with Down syndrome — just as you do here and on our Facebook page, but also in letters to the writers and editors of the articles where such misuses occur.
Thanks as ever for being here to share the excitement and take part in the rewarding work of supporting Down syndrome cognition research. We’re thrilled to have such a thoughtful, engaged group of friends here. We count on you to keep the dialogue going, so we appreciate hearing your thoughts.