[nfbmi-talk] relevent public comment mi silc
joe harcz Comcast
joeharcz at comcast.net
Thu Sep 18 23:35:49 UTC 2014
This public comment is from a person with a significant disability who has been part of the independent living movement. She echoes the struggles we who are of the organized blind have with agencies squelching consumer control, let alone in put or accountability.
Her words are brave and on point concerning how all of the system has turned in Michigan.
Bottom line as the saying goes, "Nothing about us without us!"
To: Michigan Statewide Independent Living Council
From: Darma J Canter
Date: September 8, 2014
Re: Public Comment for Michigan SILC, business meeting, Sept., 12, 2014
The IL Movement was comprised of people who experienced discrimination and dependency and who demanded independence and equality. America’s IL Centers embodied the philosophy and the strategy for change. People with disabilities, who understood the problem and were committed to self-determination, brought their vision into reality. Twenty five years later, Michigan has dismantled the dream of peer support, advocacy, disability equality and integration.
Michigan no longer honors the Movement’s founding principle, which is literally, legally, specifically meant to be consumer controlled.
1. Michigan CILs are no longer consumer controlled. CILs are currently led by people who see their peers as the directors of other agencies. They are no longer part of a movement. They have become agencies directly controlled by professionals. They have become providers. My Movement has been turned into a business. Those who staff Michigan CILs have not experienced the problems, do not identify with them, and have no need for a solution to them. I understand that sounds harsh, but the entire nation is noticing.
2. Who is a consumer who should lead and staff the CIL? People who have personal experience with discrimination, exclusion, and injustice based living with a disability in an ableist society. They are individuals who belong to a community and a culture based on shared experiences. They may have degrees, they may have a professional role in the agency, but first and foremost they are the peers of other individuals with disabilities.
In the beginning, the IL Movement was intended to be cross-disability. Diagnosis is not as important as personal experience; I know that my brother’s suffering could easily be mine. If they send my sister to a group home because she needs in home supports, I know that could be my future. That brings me to the expression used in law “significant disability”. CILs should be staffed by people who have a very significant experience with disability and discrimination. CIL staff - as peers - should understand the enormity of being forced into dependence intimately and that expertise cannot be substituted for any amount of “compassion”.
Having participated in three NCIL Conferences over the past five years, I believe Michigan is far removed from the CIL / SILC experience in other states, specifically in terms of consumer control. At the conferences I have attended, Michigan was not represented in any significant way. Michigan CILs seem to be averse to joining the Movement nationally.
When one looks at local Centers’ websites, it’s very difficult to find people with significant disabilities leading the Movement. Very few staff descriptions (if any) say “I am a person with a disability and I believe.” You can hire capable people, but it seems CILs hire and pay people with no disabilities or minor disabilities and recruit people with significant disabilities to volunteer for free. I don’t think that is either the letter or the spirit of the law.
I hoped to be here to present my concerns to you in person. However, I fell and broke my leg on August 4th and had major surgery on August 5th, so I am not able to join you at this time.
I claim the IL Movement as my own. I cannot abandon the purpose and principles while the CILs/SILC become agencies, businesses and service providers pursuing none of its original mission. Disability Community, Disability Culture, Disability Pride is a message as important in Michigan, in 2014 as it was in the 1970’s, 80’s, and 90’s.
I will look forward to a continuing conversation about how we can redirect our efforts and reclaim our heritage!
1898 Orshal Rd.
Muskegon MI 49445
Canter2000 at aol.com
CC: Rodney Craig rodney at misilc.org
Valarie Barnum-Yarger valarie at misilc.org
Tracy Brown Tracy at misilc.org
Maureen Ryan, NCIL Region 5 Representative: moryan at charter.net
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