by Darma Canter
The benefit of disability identity and culture is counterbalance to the stereotype of disability that perceives us as inferior, less than the non-disabled peer. We refer to that perception as “ableism”. Society has interpreted significant mental or physical differences as undesirable, incapable, unequal, unimportant and treated the disabled as dependent and even a burden. Some differences are observable and some are not, but if a teacher, doctor or parent has labeled you as disabled then you are not deemed worthy; your place in the family or community is diminished. The social model of disability teaches us that “people who have disabilities are more harmed and hampered by discrimination and physical barriers in the community than by their actual bodily impairments”.
In the 1970s, Independent Living leaders used the term consumer in the same way Ralph Nader used it to mean decision-maker. Individuals with disabilities intended to position themselves as informed consumers, directing services and choosing products specific to their individuals goals. Consumers have rights and responsibilities and are ready to be active participants with agencies and service providers to build and maintain a full life in the community. No small step, Independent Living philosophy changed the way we feel about ourselves; we are not our diagnosis, we are not objects to be acted upon, not a social experiment. We are entitled to own our personal hopes and dreams. For my generation, it was liberation from an oppressive social bias, and told a counter-narrative that equated disability and self-worth.
In typical fashion, the swollen disability services business responded to the consumer movement by conflating ‘consumer’ with someone who uses their services. Rather than acknowledge the intended shift in power described in the legislation, agencies adopted term, but used it as a substitute for ‘client / patient’ and ignored the implied partnership.
Legislation used the term consumer to address the intended shift in decision-making and the power of consumer control to transform the service delivery model. IL funding mandated the Centers for Independent Living (CILs) would be operated by disabled people who deal with ableism, and live with discrimination. The law says the State Plan for Independent Living is written by the Statewide Independent Living council (SILC) and its consumer majority. The concept of consumer control is used to give power and authority to the people who experience the problem and design the solution. Independent Living and the disability rights movement were grassroots political movements by and for people with disabilities. Who could think in a decade the distinction between disabled and non-disabled would evaporate… but not in the way intended.
Today in Michigan’s Independent Living Program, “everyone has a disability” and every medical condition is disabling. Disability identity as a lived experience is devalued, nullified, and irrelevant. What was once grassroots activism impassioned by our shared experience has been converted to a non-profit service delivery business operated by professionals. Yes, some of the professionals have disabilities, but their disabilities are second to their identity as social workers, employment councilors, business managers and members of the chamber of commerce. Changing policies or practices in the community isn’t fueled by their personal oppression or subjugation; it is rather more an academic issue to study and profit from.
All the civil rights legislation and the policy changes in disability programs and services occurred between 1970 and 1995 when the disability community drove a social agenda to end discrimination. As the movement gained recognition and secured federal and state funding for peer-run programs, it became an advantage in some situations to claim a disability.
We are experiencing a period when many disabled don’t see themselves as represented in the movement. What does it mean to describe yourself as ‘disabled’ in a medical model vs. a social model? Who has the right to call themselves a consumer? How can the IL movement claim to represent a cross-disability, justice agenda if it continues to be led by business professionals who aren’t motivated by the experience of discrimination?
I am going to think through this dynamic over the next few weeks and I hope you will comment or offer alternative perspectives to the discussion.