Here’s a story for you about an imbalance of power. It takes place at an institution tucked away in the bucolic and swanky hills of Canton, Massachusetts. In this institution children are shocked through electrodes strapped to their limbs and torsos. Those shocks can be applied at any time, day or night, at the whim of staff holding remote clickers, which send painful charges through the body severe enough to produce skin burns. Some children suffer chronic PTSD for years, some have died before getting out. Strictly prohibited in prisons, these practices have been condemned as torture by human rights bodies across the globe. But, horrific as this story is, it’s not the only imbalance of power I want you to think about. Consider also the hundreds of survivors and peer advocates, mostly autistic people, who have been petitioning to ban this form of brutality for decades. Despite near universal outcry, this institution, the Judge Rotenberg Center, has secured a small contingent of politicians, lawyers, well-connected healthcare professionals and, yes, family members to ensure that the shocks continue with impunity day in and day out, earning Rotenberg nearly $100 million in 2022.[i]
When Ed Roberts founded the Independent Living movement, he targeted this very type of power imbalance, where disabled people – you may call them consumers – lose personal agency to those entrusted with providing them services and supports. As personal agency goes so goes political agency, and these are the two short steps by which abuse, neglect, segregation and loss of self-determination get baked into systems.
Most of us know of nursing home residents suffering inadequate care and serving as cash-cows for profit-seeking enterprises. Or people trapped in guardianships despite their professed desire to live independently. Or people in wheelchairs forced to call emergency services to help them leave inaccessible homes for routine excursions. All these situations arise from a complicit society, from inadequate oversight or regulations, or just plain bad policies and ableist indifference. Roberts saw Centers for Independent Living (CILs) as bulwarks keeping systems honest and humane, he saw them as bullhorns bringing voice to the voiceless. In his words: “[CIL] leadership would be around political advocacy, around political change rather than around one advocate working to get services for one person… All things change when you get political power. Politics changes lives.”
Roberts believed that separating the movement from direct services would keep the disability community politically engaged with the functions of larger society as opposed to cloistering services and consumers and further perpetuating the power imbalances that people with disabilities face every day. He saw the risk of professional providers and disability-adjacent communities co-opting the movement, transforming it into an agent of business interests and ideologies that wouldn’t necessarily support the best interests of disabled people. Again, in his words:
If we are co-opted by the system, we are in trouble. More important than being service deliverers is being advocates. We’re too heavy into social services. Yes, it’s easier to get money that way, but it’s harder to get advocacy. We’re losing the ideology of independence.[ii]
A couple months ago, Liberators for Justice, in consultation with IL advocates across the country, posted an open letter calling for the movement to return to its foundational ethos of peer leadership, political courage, and independence. So far more than 40 CILs, a half-dozen Statewide Independent Living Councils (SILCs), and two national CIL networks have signed on. Tens of individual and organizational allies have also committed their support. It’s no surprise to see such engagement – the spirit of the movement continues with gusto in many parts of the country.
But what about those who haven’t signed? The once scrappy sibling IL network, APRIL, is mum on the letter (despite two board members – so far – committing their organizations to the pledge). One SILC reached out with questions about why guardianship is an issue. One CIL board member contacted L4J to say that the letter has spurred her organization to convene an emergency meeting to assess their leadership composition and activities, that many fellow board members realized they may have strayed from their core mission. A good start!
We’re sure to see more CILs and SILCs sign the letter as it percolates to the tops of their inboxes. But, what will it tell us in the end about those who don’t sign? Apathy? Indifference? Or will it be a barometer of how much of Roberts’ warning – the co-opting of our movement – is taking hold?
[i] For more on this institution, see:
- New York City Sends $30 Million a Year to School With History of Giving Kids Electric Shocks
- ‘How could that be legal?’: New book explores history of controversial Massachusetts facility that uses electric shock on residents
[ii] Read Ed Roberts’ discussion of the Independent Living Movement in Mouth Magazine
