Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Wednesday, November 07, 2007

SEAC Appointee Reporting

Please take a moment to say hello to me, the newest appointed member of the District 742 Special Education Advisory Council.

I know this may come as a surprise, but although I am quite vocal at times on this blog, oftentimes my doings I keep in secret. In this way, I won’t be embarrassed if I am turned down for an advocacy position I desired enough to warble my way through an application for.

In these past few months I have taken on a sizable amount of additional responsibility in regards to disability advocacy in the community. It all began with my acceptance into Partners in Policymaking. A few months later I was given the opportunity to help facilitate the local Parents of Children with Autism Support Group which is sponsored by ARC. Now included in my fold of activities is the SEAC.

In this past year since Sandis’s autism diagnosis, Gracie’s diabetes diagnosis, and the ensuing chaos as a result of these diagnoses, there have been many individuals in the community that ensured that my family was not lost in the shuffle. The sheer amount of paperwork involved in ensuring that your child has services is overwhelming at best. I realized very early on that I could not have garnered the services and supports my family has were it not for these individuals.

At some point, our lives, my family, we fell into a groove. We still have our days. There is still chaos. But within that chaos there is an order, and also, there is a peace as through our journey in the past year we have learned so much about our rights and how they apply to our lives in the community. This is no small feat.

At what point should I acquiesce and idly warm my seat as my family has been provided for appropriately? I’ve come to the conclusion that there is no time for warming my seat. The reason is this: My family’s successes are fueled by the hard work and advocacy of all the families before me. Where other families in the past had no opportunities for community based life and services that my family does. It is only through their exhaustive work that we have what we have. I have a social responsibility to continue this work so families after mine will not have to work as hard as I have for appropriate services, inclusion, and bureaucratic accountability.

Apathy is not appropriate. If you have the inclination to complain about the current set of societal circumstances, then you have the initial background necessary to facilitate positive change in your community. It takes time, and everyone is Busy. Yet in the time you take you demonstrate to your children, you acquaintances, and friends that community involvement is essential for any community to thrive.

3 comments:

Vivian said...

*Standing Ovation* I looooove this post. Congrats on the new position, I know you will be perfect for it.
You are so very right, we all have a responsibility to do something, to make things better. I am honored to know you Ms. Sarah. =)

Colleen said...

Another great, thought provoking post from you Sarah.

KentT said...

Hi,

Know what it's like dealing with Special Ed bureaucracy myself and dealing with Type 1, Cerebral Palsy, and spina bifida. My wife and 2 little ones have spina bifida too. We are a 4 chair family. Give em a fight out there. Come visit at www.sugarfreewheeler.blogspot.com anytime. If you have questions, post comments.