We've got work to do folks....

A personal Message from Michelle M. Guppy:
(Written March 2009)

We've got work to do folks, we've not moved much since this quote from the full essay whose link I will post below – written in 1990 by Lou Brown.

Mind you, it was written in 1990, and is referring to 20 years prior to that.

It is now 2009....

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Quote from Lou Brown:

Finally, if we have learned anything at all over the past 20 years, it is that there are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution-, no one should live in one. We cannot function on a committee to determine who does and who does not get medical treatment; everyone does. We cannot debate who should get an integrated education; all must. Just because we are overwhelmed, frustrated and at a loss for something to do, we cannot tolerate shocks, slaps, pinches, or any other obnoxious violation of dignity. Let the moderates, compromisers, and data worshippers go elsewhere. Let the people of TASH be value based, unbending, tough, aggressive, assertive, graceful, compassionate, and effective.

~ ~ ~

It's Sunday morning and I'm all dressed up. I have somewhere to go, church, but it's not going to happen this morning.

My husband and older son off to early prayer meeting, Brandon, my fifteen year old non-verbal son who has autism and I are left to join them later.

All dressed and ready myself, I went in Brandon’s room to wake him up; but after seeing him sleeping peacefully, just couldn't...

My husband shared with me before he left, that early in the morning when he checked on him when he woke up, Brandon was wet. "Soakins" we call it. Ok I call it. That's when everything is wet...

So, I'm sure Brandon was tired from being up so early and not able to sleep because of the wetness….

All curled up in his bed, in a peaceful, innocent, safe, - cocoon.

I stood there staring at him with more joy in my heart than I ever remember feeling.

But then each time I see him sleeping so peacefully and innocently and all 5'9" of him curled in a ball about the size of a 4 year-old, - I think that.

But this morning especially….

This morning - after reading a few months ago, the Department of Justice report of abuse and neglect and death, - of those in State Schools and Institutions in Texas.

This morning - after a solid month of nothing but more reports of abuse, neglect, and criminal activity against those just like my son, in those State Schools or Institutions.

This morning looking down at him while he slept; I could see him as the young man in the back of that van being sexually assaulted. I could see him being the young man awaken in the night and forced to fight another resident.

I could be the mom getting the call about my son, the 'client' who was "accidentally" pushed or shoved and who fell, hit his head, and died....

My husband won't even let me share those articles with him....

When I ask, "Don't you care?" -- I'm met with the most painful look and a reply of, "Don't you think I think about that every time I put him in a car with someone besides us?" And, "Don't you think I think about that every time we take him to some program?"

And then I understood why he can't read those articles.

This man, who is physically the strongest man I know, is weakened by the thought of not being able to protect his own son.


When, when did that thought even creep into our minds that it was more than a thought to not think about? But that it was a reality to fear?

And when, when did parents like me have to have those thoughts and images lurking in the back of our mind in the first place; so that we cannot even live in peace, (let alone die in peace), for fear of dying and leaving our vulnerable child behind?

And I'm not talking about just physical abuse...

When a parent has no choice but to put her child in one of those places just to get help, that is criminal.

If a child or adult is there and they are not being educated appropriately, that is neglect.

If they are not given proper medical treatment, or over prescribed with harsh medications to cover the effect while not biomedically treating the cause - that is 'doing harm', and abuse.



Where have we come since 1990 when the opening quote I used was written?

What has changed since then?

Sadly, I know the answer....

More state schools and institutions. Less oversight.

More money for those state schools and institutions. Less for community supports and housing.

Our numbers have grown...those of us in the disability community, and for me, the autism community.

Why hasn’t the sound of our collective voices grown as well?

Have we fallen victim to the fear of failure, so that we have quit trying to succeed at all?

Do we think someone else is going to do it for us?

Or that we are tired of doing it alone?

I hope not.

I have faith that we can succeed.

I know that no one else is going to do this for us, we must do it for ourselves.

I know I'm not alone, and am joining with those who are doing what they can as well.


This morning, I let my son sleep late because he was tired. If he were in a state school or institution would that be allowed?

I check on him no less than 3 times before I fall asleep each night, to make SURE he is dry so that he can sleep peacefully through the night.

Would they care if he was wet or soiled?

How many times would they check?

I let him have his “tubby-time”…. Which for him is about an hour long – and where he loves to just sit in there and feel the sensation of the bubbles and hear the motor running from the jets; and when I get the water at just the right trickle coming out of the spout, he can last in there as long as he wants before the tub fills up.

Would that be allowed? Or would they force him to take a shower?

He is afraid of showers....

What rights and freedoms and luxuries would he have in one of those places?

How would I know that what I detailed out in his care plan, was being carried out?

My son is not interested in T.V. or Video Games or Movies, - during that time of the day, would someone take him outside to run or walk? Have a trampoline for him to jump on?

Or would they say they did, but didn't.

I wouldn't know. My son can't talk.

It takes all my time and energy to care for my son, and I consider it a priviledge. Ok maybe I feel less than priviledged some days, but I always consider it an honor and a duty to respect this individual human being that God has entrusted to my care.

Would someone making minimum wage consider it that? Feel that?

Would they be deterred from even thinking of abusing my son because of the arrest, charges, conviction, and prison time of those who have been found guilty of doing such things before them?

All I remember reading about, is the crime. Not what the punishment was.... if there was any.

Would they spend their free time like I do, learning new treatments to help him overcome some things medically that hinder him? Learning strategies to cope with his behavior issues he sometimes has; or would they just medicate him to subdue him?

And what could a state school or an institution do, along with their employees, - that they couldn’t do right here in my son’s home, or his community via home supports or group housing, - with the parents close by to observe?

And actually allowed to observe. Anywhere. Anytime.

No one is saying there is not a need for housing for individuals with disabilities who have no one to care for them and no where to live.
It’s a matter of where it’s needed.

No one is saying there will be loss of jobs.
Attendant care providers, nurses, therapists, - will always be needed.
It’s a matter of relocation of those jobs.

This morning, as I write this, the only thing that has changed in the opening quote, is this line:

…we cannot tolerate shocks, slaps, pinches, or any other obnoxious violation of dignity.


That has changed...

Changed to: “ we are still tolerating…. and it is now sexual abuse, punching, and death.”



Please join me in writing to the Governor, Lieutenant Governor, your representatives and senator, and the Commissioner of DADS, Addie Horn.

Share the opening quote with them, and the link to the full text of the essay below.

Ask them where we are now, as compared to then.

You may not agree with everything Lou Brown shares in the essay, but the basic principal is one I feel we can all support…

Please read it.....

In closing, remember this modified last line of that quote:

Let us, the advocates for our children or loved ones, be value based, unbending, tough, aggressive, assertive, graceful, compassionate, - but most of all – effective!

Will another 20 years go by before we get the “effective” part right?



Sincerely,

Michelle M. Guppy
MichelleMGuppy@yahoo.com


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Article by Lou Brown

www.TASH.org

To view article, click on: http://www.tash.org/WWA/WWA_history.html