CDBA Issues Testimonial on IL Senate Bill 0752

Yesterday, on March 14, 2017, the Illinois Senate Committee on Human Services passed Senate Bill 752 which proposes reforms to the Ilinois Deaf and Hard of Hearing Commission (IDHHC).   Our organization was there to provide testimony on the legislative proposal.   It was also the first time that our organization formally asserted its new name “Chicagoland DeafBlind Alliance” which is formally known as LeCOBDA.   Come join us for our meeting this Saturday, March 18, for more exciting news about our new organization direction!

Below, is the written testimonial given to the Senate Committee that you can read.

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Submitted by:  Chicagoland DeafBlind Alliance – March 14, 2017

To:  Members of Illinois Senate Committee on Human Services

Thank you, Honorable members of this Committee, for allowing me this opportunity.  My name is Bryen M Yunashko, and I am the president of the Chicagoland DeafBlind Alliance.    We are the only official DeafBlind non-profit organization in the State of Illinois.

In 1995, the State conducted a survey and identified 7,000 residents with combined hearing and vision loss.   Two recent surveys elsewhere show significant numbers.   In North Carolina, for example, 26,000 residents were identified, and a national survey conducted by a university in New York identified 2.4 million people with those combined losses.  This only identifies those who willingly identify themselves as having combined loss.   Many more exist out there, who live with the societal shame that somehow, being DeafBlind is a terrible thing.   With our population continuing to live longer, it is easy to assume that in Illinois, that number is higher today than it was in 1995.

It is for this very reason, that we deeply appreciate that language is now included to recognize DeafBlind as a stakeholder of the Illinois Deaf and Hard of Hearing Commission.   We agree, it is important, and its time has come.    However, our organization expresses deep concerns about the fact that we have never been consulted in any way on the drafting of this legislation.   If we are a stakeholder, should we not be a part of this resolution’s outcome?

We are a growing community, coming into consciousness as an empowered and diverse group.  We are neither Deaf nor Blind.  We are DeafBlind.   We strive to speak for ourselves and not presume others to speak for us.   Our lives, our experiences, are ours and the challenges we must overcome, we must overcome them with our own determination of destiny and future.

Make no mistake about it, we are keenly aware of what lays before us.   We face obstacles, education, and discrimination on a daily basis, even by those who are seemingly our closest allies.

We are concerned about language in Senate Bill 0752.   If we are now granted formal stakeholder status, should not the name of the agency IDHHC reflect that?   And while the bill increases specificity of representation, we are concerned that this specificity will in fact a) tokenizes us and b) provides inadequate representation of the true DeafBlind life.

As I mentioned, we are a diverse community.   Some live in denial, and some embrace who they are.   Some live in rural areas, and others in urban areas.   Some have been DeafBlind all their lives and some became so later in life.   Nationwide, our unemployment rate stands at 84%, one of the largest of any disability.    Some have ready access to training services, others do not.   And in states like Illinois, we do not even offer some of the most basic services to life empowerment and independence.    In fact, I could not even submit a witness slip independently without assistance, even though Illinois state law requires accessible websites.  How many other DeafBlind voices are not being heard because a function as simple as submitting a witness slip is not accessible?

It is impossible for a single DeafBlind person to adequately represent the views of such a huge and growing population.

We recognize the intent of this legislation is well-meaning and we do not oppose that spirit.   What we ask for today is to revisit and ensure broader stakeholder input into the development of the language in this legislation in order to support a truer and more representational and diverse Commission.

Thank you,

Bryen M Yunashko

President – Chicagoland DeafBlind Alliance

president@chicagodeafblind.org

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