Friday, March 4, 2011

A parent's impassioned plea to the ADD: Don't force my son to live by your rules!

These are comments submitted to the Administration on Developmental Disabilities by a Michigan parent:

I understand your passion to include people with disabilities into the fabric of our society. I commend your desire to reverse a long history of hiding these individuals away from public eyes out of shame and an unwillingness to accept the knowledge of their very existence.

Unfortunately - in your zeal to right this wrong and insist that persons with disabilities have rights and access to all the facets of society previously denied them - you are missing a HUGE point.

To force your solution on every person with a disability - regardless of their interests and VERY real, legitimate needs - YOU are doing the same thing - taking away the rights and choices of these people to NOT have to live the way you want them to.

Who are YOU - people who do not know my son - a wonderful, 20 year old, severely physically and cognitively disabled person who needs complete care - to say that he must be isolated from his peers by shuttering the doors of programs that are designed to engage him at his level! Who are you to say that a group setting for meeting his needs is inappropriate for him! His world is small because that is what works for him.

Trust me I know. For years I have imposed many of my expectations about his need for engagement and participation. I had him in full inclusion, I enrolled him in enrichment classes, I employed therapists beyond the school to help him reach higher. And while I am glad that we did this, and I think he did benefit for a while - the gap between his speed and capacity and the speed and capacity of the world around him became greater and greater. And it became clear that he was not happy with these activities.

Now he appreciates a self-contained class in school, or spends time with family or at a group center in our town. His world is much smaller - and slower and it is an excellent fit for him. This is where he has his needs met best and this is where he is happiest.

Your arrogance - that you know better what he needs and what is best for him and therefore have the moral authority to insist that this is not an acceptable setup diminishes him in the same way that world used to impose its expectations on people of this level of disability.

These revisions to close even small group homes and sheltered workshops DENY the very existence of my son. And the idealistic view that everyone can be a functioning participant in their own lives is not borne out in reality. For instance, I challenge you to meet him and teach him how he is going to have a bank account! Seriously? What are you talking about???

You insult him just as much as people who think too little of him by insisting that he can fit your model. Because that is just as much of a denial of who he is.

Again - I appreciate that your ideals are in the right place and that giving these solutions as options, even strongly encouraged options is great. But your perceived victory with these changes, eliminating legitimate options to meet the needs of this very real, very alive population will be a different kind of cruel for people like my son Alex.

I beg you to wake up and have more sense. Please do not deny my son or people who want and appreciate these environments to be forced to live by your rules.

Annie Zirkel, mother and guardian of 20 year old Alexander Hagopian-Zirkel

Visit Annie's Website here and sample more of her writing.

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