Consumer control is the foundation of Independent Living, and permeates the board, staff and management of Centers as well as the Statewide Independent Living Council (SILC). The requirements are clear:

  • More than 50% (51% or more) of the board members of a Center for Independent Living must be individuals with significant disabilities.
  • More than 50% of the management staff of a Center (whether that is a single person in the Executive Director, or a management team) must be individuals with disabilities.
  • More than 50% of the other staff in a Center must be individuals with disabilities.
  • More than 50% (a majority) of the voting members of the Council must be individuals with disabilities NOT employed by any State agency or center for independent living.

These requirements make it clear — Independent Living isn’t about professional staff as much as it is about people with disabilities forming their own responses to what independence looks like in their community. There should be no hesitation if the CIL is able to have 60% or 80% or 100% people with disabilities in these areas, but absolutely individuals with disabilities MUST form a majority in every component of IL in your state. This is about consumer CONTROL! That word is used for a reason — because unless people with disabilities control the work of both CILs and SILCs, we have missed a key requirement of IL.

There is an area that appears to be a sticking point in some states. Not all disabilities are visible, so if you can’t tell if someone has a disability, you need to ask them. This is definitely not a problem with the board and the council, but asking an employee to disclose a disability is a little touchier, and you cannot ask a prospective employee if they have a disability. What to do? I suggest that you are clear in your interview with prospective employees that you are looking for a qualified person with a disability and if they aren’t aware of disability history and philosophy, provide the short version. Then ask, “What is your personal experience with disability? How do you think you will fit in at a consumer controlled organization?”

Sometimes I hear the complaint that members of the board, or the CIL ED, or council members are not “disabled enough” to serve in their role. First, note that only the members of a Center’s board are required to have a “significant disability”. That term “significant” is not used in any of the other requirements. As a person whose disability is usually not noticeable, I am sensitive to this concern. Certainly we want the community to be able to see that we are consumer controlled, and for that to happen we have to have a fair representation of visible disabilities, but that is not a requirement. When someone asks me about whether a disability is “enough”, my response is, does the person consider themselves part of the disability community? Do they interact in the world as a person with a disability in their work, their home, their community? If not, then they may technically meet the requirement but have missed the spirit of the law. We are community when we come together in our disabilities. We are strong because we are many and we represent a cross-section of disabilities, both visible and invisible.

Here is the toughest part of this conversation. You and I don’t get to decide if someone else is “disabled enough” to count. Each person makes their own declaration. We do not, and will not, require medical proof of disability. While this may allow for people claiming a disability to claim some power, I hope our community is strong enough to weather such actions and continually shift the control of the IL Network firmly to individuals with disabilities.

Be particular about Consumer Control

3 thoughts on “Be particular about Consumer Control

  • October 21, 2020 at 5:32 am
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    Another excellent reminder of our role. I look forward to your emails.

    Reply
  • October 21, 2020 at 6:00 am
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    Great article! It discusses a topic I have wondered about and clarifies several questions. Sharing with my staff and board!

    Reply
  • October 21, 2020 at 3:15 pm
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    Consumer control is more than a number in a table, particularly when we have entire states’ IL Programs being taken over / appropriated by non-disabled people. This is not about invisible and visible disabilities. This is about non-disabled people appropriating our voices – the very problem Independent Living was designed to solve. If you assume that CILs are self-monitoring and that all CILs are consumer controlled regardless of input from the community, a lack of consumer control cannot be acknowledged or corrected when it occurs.

    Reply

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