Maine’s Malaga Island in the late-19th and early-20th centuries was inhabited by a mixed-race community of fishermen and families. In the early 1900s, a downturn in the local economy, combined with fears of encouraging “pauperism” and rising ideas that claimed a tie between genetics and class combined to turn public opinion against the people of Malaga.
The Maine press published many articles and editorials suggesting that the “Malagites” – a term that turned quickly into a slur – were lazy, unclean, and possibly criminal. In 1911, the Governor visited the island with his Executive Council. “It is said that Governor Plaisted expressed the opinion that the shacks should all be burned. This would be the most charitable thing that could be done, after which the inmates could be placed in some institution…” (Lewiston Evening Journal, July 15, 1911)
In 1912, after legal disputes over the ownership of the island, the inhabitants were forced to leave. Seven of them were sent to the School for the Feeble Minded – and the bodies from the Malaga cemetery were dug up and interred on the School grounds as well. The racism of this moment echoed public sentiment about people with developmental disabilities – neither Black people nor people with disabilities were looked at as fully human. The excuses used to justify such an act reflected the beginnings of a new “science” that aimed to explain the differences between people through their ancestry: Eugenics.
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?
From the beginning of the institutional period, the cost of providing care for people with developmental disabilities was both the reason for building larger and larger congregate settings and an excuse for any evidence of neglect or poor treatment that came to light.
Throughout the history of Pineland you can see the frequent requests for more funding. When Pineland was closed a new pool of money was flooded into the community. This followed a series of cuts and the same types of pleas for additional funds that can be seen through the institutional period.
To this day, disagreements over the amount of funding put towards services plague this system. Reimbursement rates and workers’ paychecks, infrastructure and innovative care – the question of “how do we pay for this?” hangs over all the decisions made.
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?