7/4/25: Disability, Meet Independence
Today is my Crippiversary – 21 years to the day since I broke my neck – which to me is a strange cosmic joke given the whole concept of Independence and disability. Temporarily able-bodied folks often think that they are Independent because they do their own chores and wipe their own ass. But the Independent Living Movement, which began in Berkeley, CA, in the 1960s, produced a different concept of Independence that’s central to modern disability rights. It took me about 2 years to go from temporarily able-bodied to being enmeshed in the principles of Independent Living (IL), and IL is much more honest than the naïve able-bodied version of Independence. It grapples with the importance and complexity of systems. It recognizes the value of community. It demands government and interpersonal supports. It demands humanity. Indeed, Lady Liberty would be proud of Ed Roberts and the Rolling Quads. She’d shine her light on the Proud, Independent Crips and be our Giant, Green, Beaming Cheerleader.
Francis Hasler put together a nice summary of the philosophy of independent living more than 20 years ago, pulling quotes and insights from a number of leaders and thinkers. At a high level, she notes that “Independent Living is the emancipatory philosophy and practice which empowers disabled people and enables them to exert influence, choice and control in every aspect of their life.” And while there are many definitions of independent living, “[t]hey all focus on a few key concepts: choice, control, freedom, [and] equality.” Hasler also points to a list of 7 “basic needs” of independent living identified by Derbyshire Center for Independent Living (CIL):
Information – to know what your options are
Peer Support – encouragement and guidance from other disabled people
Housing – a suitable place to live
Equipment - technical aids, to reduce unnecessary dependence on others
Personal Assistance – human help with everyday tasks
Transport – to get where you need to be
Access to the Environment – to go where everyone else does.
These supports are crucial for people with disabilities (PWDs) to have agency over their own lives, to interact with their communities, and to thrive. In the US, the expansion of CILs – community nonprofits run by and for disabled people – has provided countless PWDs with the advice and concrete supports they need to live in the community and not in institutions. More knowledge-sharing and community-building empowers us. More accessible housing and rental support enable our community living. New assistive technologies provide us new experiences and ways of interacting with the world. Well-funded caregivers help us meet the day. Accessible vehicles and well-designed public transit move us where we desire (at least, ideally). And elevators, ramps, curb cuts, audible crosswalk signals, digital accessibility standards, and so many other bits of infrastructure and technology that people fought damn hard for help us access what everyone else takes for granted.
Without the seven supports above, though, it’s difficult for PWDs to live independently; we may end up trapped in nursing homes or simply not make it. And today, on the day Trump signed the extremist reconciliation package into law, each of the seven are under attack – along with all our Independence. Every heartless cut to HUD is an attack on Independence. Every disabled person and every carer kicked off Medicaid is an attack on Independence. Every cut to home and community-based services is an attack on Independence. Every rescinded equitable transportation grant is an attack on Independence. Every deleted piece of ADA guidance is an attack on Independence. The elimination of the Administration for Community Living is an attack on Independence
The current regime is an attack on Independence.
Many people – goddamn heroes – fought for the Independence that’s being torn away from us. They developed a whole new concept of Independence and built entire systems to support Independent Living. They were media savvy and suffered public indignities to point out society’s shameful lack of access. They certainly weren’t afraid to get arrested. That we have so much to lose is a testament to their grit, determination, and resolute belief that disabled people deserve Independence.
So, Happy 21st, disability. Cheers to Independence. Cheers to everyone who built what we have to lose.
No "in other news" this week. Hope you understand…
