Bureau of Mental Retardation and Public Guardianship
A bill proposed in 1967 to create a bureau “to deal exclusively with mental retardation” was lauded by the Commissioner of Mental Health and Corrections Walter Ulmer, to “give the program continuity, permanency, central direction and central responsibility as well as a vehicle for proper funding.” (Lewiston Evening Journal, January 10, 1968).
Another “responsibility” that was granted to this new department was control over people with developmental disabilities who were determined to need guardianship, and who didn’t have family members willing or able to be guardians.
This was the first such law in Maine creating a system by which the state had entire control over the choices of an adult person, and the laws would remain on the books in Maine to the present day.
It is easy to assume that institutions are the right place for people with significant needs – in an institution, the assumption is that we can keep them “safe”, provide all the care they need in one place, and people with disabilities can live with “people like them”. These assumptions were worked into the policies and laws until the systems and the biases were intertwined and interchangeable.
Despite the evidence that institutions do not provide better care, a more stimulating environment, or less expensive treatment options than the community, our systems still reflect the historical assumptions that built them. When asked if people would like to live in the community they sign a waiver from their right to an institution. The “institutional bias” is imbedded within the current waiver system – how most people with developmental disabilities access services – makes getting good and services in the community harder. For that matter, the “institutional bias” includes an unwritten value statement that people with developmental disability do not have a natural place within the community. But is that true? Doesn’t everyone have a place?
More troubling still, many organizations are beginning to look towards building new institutions, using very similar language to that of the early 1900’s. They point towards the failures of the community system as proof that we need large congregate settings for people with developmental disabilities.
What are the assumptions here?
Who and what do we value in our society? How do we determine someone’s “worth”, and whether they are deserving of help when they need it? Are all people really equal – and do we treat everyone as equally human?
People with developmental disabilities were sent to institutions because they were seen as useless or even dangerous to society. Their value in a place like Pineland rested on their potential for being trained to do menial labor – a Pineland resident could potentially get a furlough or even release from the institution if they could show that they could work.
In general, people with developmental disabilities throughout our history have been dismissed, patronized, and dehumanized. Doctors assumed that people with developmental disabilities didn’t feel pain, caretakers believed that they did not need friendships or hobbies or someone to communicate with, and society saw them as dangerous and unfit.
There were also people and moments in history that shifted our assumptions about the value of people with developmental disabilities – President Kennedy’s experience of loving his sister with disabilities led to huge policy shifts that impacted people with developmental disabilities across our country, and the brave self-advocates who organized a civil rights movement led directly to another president signing the Americans with Disabilities Act.
The question must be posed, what is the value of all potential members of the community, with or without disability, to the very health and fiber of the community?