Could this really be the day? Could this be the day that Massachusetts strikes through a department name that shocked me when I moved to this state? The wording in the Senate budget amendment would indicate that it is, and the joint committee that gets the budget next is not likely to change “Department of Developmental Services” back to its present name. It has been years that Massachusetts advocates have been working to change the name, and it seems that this will be the year.

The Department of Mental Retardation.

I thought that sort of name had gone the way of the institutions… Unfortunately, we still have those, too, in Massachusetts.

Mental retardation.

My son has this diagnosis along with autism. Those clinical diagnoses jump around when no one can find a clear explanation for why a person is not like everyone else. “Mental retardation” is a name I have mostly avoided using, largely because of its highly presumptive and predictive quality. “Developmental disability” seems to allow for more latitude, more possibilities. And I really prefer to refer to his abilities, rather than his disabilities, even on the most challenging days.

Beyond my own son, who does qualify for DMR’s minimal services no matter the name of the department, I wonder if a name change might not highlight the growing need for the forgotten developmental disabilities in the Commonwealth. Our own DMR houses the Division of Autism, which should serve all individuals on the autism spectrum, not just those who fit into DMR’s eligibility requirements, which are largely based on IQ, more stringently so for adults. There are a good number of people who have developmental disabilities who do not have IQs under 70. So who serves them? The Department of Mental Health sees “Asperger’s syndrome,” and hands fly up in the air: “That’s not ours! To DMR with you! Away!” Even those with multiple mental health diagnoses get pinned with an autism spectrum disorder, and DMH flies away. But right now, DMR does not provide services to individuals with Asperger’s syndrome, either.

Of course, the issue is really one of funding, and that rant is yet to come. Some who opposed the name change point to that very issue of funding, and the sympathy that the term “mental retardation” inspires. My son has been the special education mascot once or twice in his life, and I found those moments to be ones of circus-like shame. Perhaps the notion of “those poor people” inspires some guilt-ridden legislative line items, but does it inspire understanding and real systems change? Does it give people real lives, or does it perpetuate the fear? Not to say that funding is not important: I imagine that if the well had not run dry, DMH or DMR (DDS?) in this day and age would happily ensure that all people with disabilities get what they so desperately need. They would coordinate services rather than playing ping-pong to maintain a barely manageable caseload. I truly believe that every person who works for these agencies wants nothing more than to be able to provide appropriate services.

But lest I let these dreams of coordinated case management and appropriate services fly away with my point, let me get back to the very basic problem with a name like “Department of Mental Retardation.”

My son, with a diagnosis of “severe mental retardation” should, by definition, not gain cognitive abilities above those of a four year old.

How the hell does anyone know that?

And yet, with that prescription, who will ever help him to realize his potential, and not those of a clinical diagnosis?

Does a name mean anything? Oh yes. Sticks and stones have far less power.

A name means everything. And perhaps, this year in Massachusetts, a name will mean NOT keeping people in their place, but supporting their development. Maybe, just maybe, a name will mean change.