IL Language to Guide Empowerment Is Vulnerable to Misuse

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.

4 thoughts on “IL Language to Guide Empowerment Is Vulnerable to Misuse

  1. Hello Darma,
    I have a few thoughts I wanted to share about your post.
    In the first paragraph you say about people being labeled by others, but you somewhat do the very same later when you talk about “everyone having a disability”. This comes across, and probably not intentionally, as looking down on another’s disability because you don’t feel it as significant as others. While I agree that the perception of disability needs to change by the public, I feel there is still a lot in the disability community that needs work. There are many with invisible disabilities that truly feel they aren’t included in the movement and at times, and comments like the one made about “everyone having a disability” is something that hits that. IL is, and always has been, about individuals self-identifying and embracing their own disability. It’s comments like that that make it harder for individuals to embrace being part of the community for themselves, because they don’t feel they will be welcomed by the movement.

    As for the comments about professionals with disabilities. Have we as a movement not helped build the world for those individuals to achieve their professional status? For them to be fully recognized for their talent and not discredited for a disability? Is Tammy Duckworth included in this? I believe we have built change in society that has allowed people to go into these positions of power and utilize their lived experience with disability to influence and change society more. That should never be discouraged. I believe IL has a responsibility to permeate into all areas of the world, and how can we do that if we don’t have individuals going out into places that aren’t CILs?

    Also, the law states the SPIL will be developed by the SILC Chairperson and the CIL Directors. You have it incorrectly stated in your post.


    • Hi, Hannah,
      All the issues you articulate are real. As a community we need to have more philosophical discussions to work through the questions that evolved after the IL movement of the 1970s and 80s. In those early years of IL, we couldn’t imagine someone would identify as “retarded, crippled, abnormal” because those labels were the words experts used to describe our differences. If you could ‘pass’ as non-disabled you wouldn’t find any reason to identify as ‘handicapped.’ For most of social history our identifiable differences were linked to shame and exclusion. The freedom to identify as a disabled person without guilt or humiliation was the first step in building the disability community and understanding our shared cultural experiences.
      One of the characteristics we share in the disability community is dealing with the oppression of stigma, prejudice. Over the course of IL’s 40 or 50 year history, our society (American /European) has ostensibly reduced the stigma associated with identifiable disabilities. In the era I went to school, a few students with small differences were part of classroom, but students with ID/DD were segregated in alternative school facilities and never inter-acted with the non-disabled peers. Other children were removed from their homes and institutionalized in state run facilities because doctors said they would never be part of society. IL was a response to the abuse and neglect of the disabled, and the rejection of professional’s authority by reclaiming the individual’s right to independent self-determination.
      For the generations after the ADA and IDEA, the law declared disabled Americans are citizens with civil rights to equal access. I admit our society is more inclusive, but I don’t believe we are granted equal status. Your concern seems to be the question, “are all disabilities created equal?”
      On the battlefield, or in the emergency room, they call it triage; some conditions are more urgent and the longer the person waits has an impact on the outcome. In the Rehabilitation Act, in both VR and IL a similar emphasis is made for those who have the most significant barriers to reach the goal of employment or independent living. Medicaid supports helping individuals who would otherwise be placed in nursing homes or other restricted (expensive) placement. How often does the social workers threaten the mental health consumer with compliance or else you’ll be hospitalized or put under guardianship. Unfortunately, many of our disabled peers are dependent on systems, state and federal budgets, and the kindness of strangers.
      In terms of civil rights, degrees of disability shouldn’t matter, but maybe in terms of publicly funded programs and services it does matter.
      I’m going to stop even though I haven’t responded to all the questions you raise. Let’s keep talking.


      • Hi Darma,
        Thanks for the reply. I completely see where your perspective is coming from, and I appreciate the dialogue. These are important issues for us to discuss as a larger community, and that is why I pitched my responses the way I did. More open discussions with each other are needed if we will ever be stronger together. that is what we really need in these times.

        I also believe as you look at any civil rights movement in our modern history, we can’t do it alone, and we can’t do it in a fractured way. Unity of the community and strong allies will be the way to a better society. That was part of my bringing up the need to not place value on one’s disability over another. I just have real concerns that we set ourselves up as a disability community to often to compete against each other.

        thanks again and I do very much value your thoughts, opinions, commitment to the community, values, and importantly concerns. While we may not be 100% aligned in our al our thoughts, I do fully believe we have the same vision for the future for our community and for the greater society as a whole. not every civil rights leader had the same ideas on the path toward the goal, but the goal was usually similar.

        Liked by 1 person

    • Hannah – yes, but there is also such a thing as non-disabled people. In Michigan, our IL program has been taken over by them. If there were no such thing as people who have never experienced disability-based discrimination, there would be no such thing as consumer control.

      Liked by 1 person

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