Regarding the Ideology of Consumer-Control: A Primer for Disability Network West Michigan Board and Staff

Disability Network West Michigan:

Disability Network West Michigan: Follow the Law! CIL = 51% / Consumer Control Now / Nothing About Us Without Us / Disability Rights in MKG

Please allow me to assist you with understanding “significant disability” as a term used in the Rehabilitation Act. What distinguishes eligibility in Vocational Rehabilitation and Independent Living from just a medical diagnosis is the impact of the condition. Determination has nothing to do with a medical diagnosis. Diagnosis is irrelevant because it provides no information about the way a particular health condition affects the individual’s independence in self-care, education / employment, or access to the benefits of society. 

But for the sake of discussion, let’s examine the way eligibility determination is processed in VR services. The individuals who receive vocational services are described as having a significant disability or at least, the Act says, persons with significant disabilities are to be served preferentially. Anyone who is receiving a social security disability benefit has a significant disability because one governmental unit has already answered the “significant” question. Other individuals receiving VR services have demonstrated that they have a condition that interferes with “preparing for, obtaining, or maintaining employment.”

We could use the same criteria for meeting the standard of significant disability as applied to “consumer-control” in reference to CILs and the SILC. Except we have to recognize that some people with significant disabilities are working, retired from working, or not looking for whatever reason. Still, it is useful to consider who has used VR or IL services or who receives or has received social security disability or would most likely be eligible for social security benefits.

This is the most important part: the people at all levels of the CIL must identify with the experiences of the people receiving IL services. Everyone engaged in the CIL must be a peer to the persons they are serving. A PEER recognizes and understands the problem because they have the same problem, know it could be theirs, and know the problem is universal to the disability experience because they see and hear it every day from their peers.

A consumer-controlled CIL and SILC will not tolerate the ignorance and disrespect forced upon people with disabilities because of the way they look, the way they speak, the equipment they live with, the supports they use to function in society. A consumer has seen the face of prejudice, maybe disgust, and the worst of all pity. They have experienced discrimination and they know it isn’t right; they know it is their responsibility to do something about it.

That is who I want leading and directing my CIL. More importantly, the authors of the Rehab Act have said that is who must be in control of a CIL.

Lastly, we have two problems that warp the ideology of consumer-control. One is the individual with a significant disability who has shifted his identity from the disability community to the establishment; their employment status or other achievements have elevated their place in mainstream society and that is much nicer than being an outsider, so the oppressed begins to identify culturally with the oppressor. The second is an individual who thinks they are entitled to speak for and to represent the issues of the disability community without having experience of the threats and challenges of being dehumanized by the medical profession, or isolated by environmental barriers, or humiliated by discriminatory employment practices. This person has a “diagnosis” of some kind but doesn’t even identify as being disabled unless it gives them access to something; not standing in line at Disney World, or first to board the plane, or a job specifically reserved for a person with a significant disability.

If an applicant for the CIL or SILC does not identify as a person with a disability, proudly and publicly, they do not belong in those organizations, PERIOD. Remember, 51% is a minimum – barely passing. Our standards and expectations should be higher than that.


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