Listen to the podcast here at the link below (Stitcher and iTunes links at the end of this post.)
Cal Montgomery is a trans, queer, autistic, physically disabled activist and writer in the United States and a survivor of long-term institutionalization. He is a Director of the Board at the Autistic Self Advocacy Network, engages in direct actions and civil disobedience around disability rights issues and is a former member of ADAPT, the US direct-action organization.
Cal is at the forefront of action against the electric shock aversives used at the Judge Rotenberg Center in Massachusetts, which we talk about in the podcast. Cal is probably best known in the neurodiversity community for his essay “Critic of the Dawn”. In it, he writes: “Disability is injustice, not tragedy; unequal treatment, not inherent inequality.” I highly recommend you check out that essay as well as following Cal’s blog, Watch Well: A Blog about Disability.
Cal’s activism and analysis is informed in part by his own experiences as a survivor of residential institutions and, after institutionalization, working for some time in group homes. Cal describes how the institutional model is replicated in group home settings, even when they have a veneer of independent living. As he observes: “It’s really not that hard to take a program that looks like it supports self-determination and make it all about control. And we see it done every day.” The goal of disability rights is to dismantle the relics of the residential institution approach and to support programs that promote self-determination–independent supported living–instead.
“We need to make it so that people are running their own lives and staff are not running their lives.”
In the podcast, we talk about the Judge Rotenberg Centre (JRC), a residential institution that has been using shock torture on autistic and IDD residents, with a device that has now been banned by the FDA. The JRC has continued to use it against the FDA ban and the international professional association of ABA providers has endorsed its use. Both ADAPT and the Autistic Self Advocacy Network have a campaign to get the FDA to enforce the ban and #stoptheshock.
We also talk about the present day situation of institutions, the fight for fair housing and integration in society, how the strides made by other disabled communities haven’t been replicated for the developmentally disabled community–such as being able to make choices about caregivers or where and how care and services are delivered. We discuss segregated education and what access and support really mean in the context of developmental disability. As Cal said, access is not just about “getting in the room”, people also need supports once they get the access to the room.
Currently there are many people who want to live in the community that, due to bureaucracy, are steered towards living in institutions. The Medicaid system in the US is stacked towards placing people who need services into institutions rather than living in the community. If you need supports, too often the “best” way to get supports is to live in an institution. In most US states, people have the legal right to be in a nursing home or other institution “but not an equivalent right to service in the community” with supports.
“So either you hang on with loved ones providing the care you need –and as families age, this gets harder and harder –or you have to go into an institution, Or you die. Those are really your choices..”
Cal and I also discussed wandering, literal and metaphoric, and its role in learning and growing. The ability to wander is essential to development and often denied to autistic youth, especially in the special education setting. How different could things be if the desire to explore were honoured in all children?
Despite some of the difficult subject matter of this podcast, I walked away with a feeling of hope, the kind of hope that is given by shedding a light on truth–one of the many gifts that Cal brings to the movement. Thank you, Cal!