Thursday, June 3, 2010
Friday, April 9, 2010
Tolerance
Tolerance is often under represented by society as a whole. And this certainly comes as no surprise to those in the disability communities. Today words like “retard”, “schizo”, “sped” and “gimp” are used as everyday slang. It is no wonder tolerance for differences seems to be such a far away goal. But one might think that the communities would at least have found tolerance amongst themselves. That perhaps the advocates, families and those with disabilities themselves would be tolerant of others. Sadly, that is often not the case.
There are huge rifts caused by a multitude of issues between differing advocacy groups. Many disputes are over competition for grassroots funding. When there is only a little in the pot to share, groups can become extremely competitive. But probably more pervasive is the theories about what is best for those with disabilities that causes the most problems.
Ultimately, this rift can been seen in full action by watching the Autism community. Because to date, there is no valid medical test to determine what Autism is, those affected by it are left to choose sides with one of the theorists. The two most powerful groups in the Autism community are those who attribute Autism to a curable disease or vaccine damage verses those who consider Autism a neurologically diverse evolution of the species. There are extremists on both sides and many, many more folks in between.
Those in between folks are left to chose sides or remain neutral. As politics go, remaining neutral does little to help make any advancements on either side of the debate. So many pick a side just so that they have something to work with.
With both sides having dug their feet in so deeply, it is hard for either to make advancements. There is no tolerance given to either side.
How can we expect the rest of society to have tolerance for our differences when those who are living with the differences cannot even tolerate each other? How can we expect to ever advance as a species if we refuse to even acknowledge the other side is human and deserves to be treated respectfully?
While many middle ground folks can see the validity on both sides of the debate, it's not enough to bring the community together. Until we successfully bridge the gap between all those affected, it is arrogant to request that the rest of society tolerate our differences.
There are huge rifts caused by a multitude of issues between differing advocacy groups. Many disputes are over competition for grassroots funding. When there is only a little in the pot to share, groups can become extremely competitive. But probably more pervasive is the theories about what is best for those with disabilities that causes the most problems.
Ultimately, this rift can been seen in full action by watching the Autism community. Because to date, there is no valid medical test to determine what Autism is, those affected by it are left to choose sides with one of the theorists. The two most powerful groups in the Autism community are those who attribute Autism to a curable disease or vaccine damage verses those who consider Autism a neurologically diverse evolution of the species. There are extremists on both sides and many, many more folks in between.
Those in between folks are left to chose sides or remain neutral. As politics go, remaining neutral does little to help make any advancements on either side of the debate. So many pick a side just so that they have something to work with.
With both sides having dug their feet in so deeply, it is hard for either to make advancements. There is no tolerance given to either side.
How can we expect the rest of society to have tolerance for our differences when those who are living with the differences cannot even tolerate each other? How can we expect to ever advance as a species if we refuse to even acknowledge the other side is human and deserves to be treated respectfully?
While many middle ground folks can see the validity on both sides of the debate, it's not enough to bring the community together. Until we successfully bridge the gap between all those affected, it is arrogant to request that the rest of society tolerate our differences.
Monday, March 29, 2010
Raving Mother is Raving Mad Today
I've been scouring the web today reading all sorts of horrendous things parents of Autistic children are saying about Ari Ne'eman, self advocate, founder of ASAN, and presidential nominee to the National Council on Disabilities.
From calling him a mentally ill sociopath to calling him a fraud, I cannot believe how vicious people are. The irony of the situation kills me. These parents are desperate for their children to be as functional as Ari. Point in case, Kim Stagliano of Age of Autism is quoted as saying
Firstly, Ari has never stated that treatments are not worth studying. Far from the truth, he has stated that more funds need to be funneled to supports and services. Supports can appear in many forms, and treatments are supports. Ari and ASAN have been vocal about supporting those on the spectrum NOW and using some of the grassroots funds for such purposes.
Secondly, does Ms. Stagliano not see the irony in wanting her child to function as well as Ari? If Ms. Stagliano succeeds in helping her daughter be cured, does that then, make her daughter less worthy to speak on behalf of other children with her diagnosis?
Most importantly, why do these parents who insist on "curing" their children of Autism think its ok to speak on my behalf? They criticize Ari for speaking on their behalf. What about mine?
I'm just sick to death of it. Really.
This "if you aren't with me, you're against me" mentality is getting old.
From calling him a mentally ill sociopath to calling him a fraud, I cannot believe how vicious people are. The irony of the situation kills me. These parents are desperate for their children to be as functional as Ari. Point in case, Kim Stagliano of Age of Autism is quoted as saying
He has stated categorically that autism does not need a cure and that the treatments I use, that have helped my children function, are not worthy of study. He does not represent my children's needs. Without these treatments, my girls are unlikely to achieve any of the goals of the council.
Firstly, Ari has never stated that treatments are not worth studying. Far from the truth, he has stated that more funds need to be funneled to supports and services. Supports can appear in many forms, and treatments are supports. Ari and ASAN have been vocal about supporting those on the spectrum NOW and using some of the grassroots funds for such purposes.
Secondly, does Ms. Stagliano not see the irony in wanting her child to function as well as Ari? If Ms. Stagliano succeeds in helping her daughter be cured, does that then, make her daughter less worthy to speak on behalf of other children with her diagnosis?
Most importantly, why do these parents who insist on "curing" their children of Autism think its ok to speak on my behalf? They criticize Ari for speaking on their behalf. What about mine?
I'm just sick to death of it. Really.
This "if you aren't with me, you're against me" mentality is getting old.
Sunday, March 28, 2010
Monday, June 8, 2009
Wednesday, May 20, 2009
A Brave New Education
Yesterday, the GAO Education Committee held a hearing on Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools. I watched with bated breath. Our story was one of the hundreds that congress was hearing about for the first time. Thanks to grassroots efforts by a bunch of angry parents in a Yahoo Group someone was finally listening. COPAA, The Council of Parent Attorneys and Advocates created a document for the committee.
UNSAFE IN THE SCHOOLHOUSE: ABUSE OF CHILDREN WITH DISABILITIES
Our case is #C26
The outcome of the hearing will have little direct effect on us. Our son now has Post Traumatic Stress Disorder added onto his seemingly endless list of medical and psychological diagnoses. But I push on to advocate for the thousands of children this is happening to right now - right here - in the great USA. Where animals and criminals are treated better than children.
Yet I do feel a small sense of validation. There are others. We are not alone. And perhaps that should help me feel better. But because the common bond we share is crisis, I am only saddened. There are thousands of children abused by the hands of those we "legally" must entrust our children to everyday. And despite the possibility of stricter laws, I critically question whether any legislation will prevent school abuse. There are already laws that make child abuse illegal. It's the lack of enforcement or consequences to public agencies that lets it continue behind closed doors.
These children have lost their innocence, childhood and lives in a system gone terribly wrong. I thank God he was not one of the many children who were murdered by the system.
But I keep on advocating. There is much much more work to be done.
UNSAFE IN THE SCHOOLHOUSE: ABUSE OF CHILDREN WITH DISABILITIES
Our case is #C26
Between kindergarten and first grade, the student was regularly put in seclusion as a result of "behavior" issues, sometimes for hours. There was no positive behavior plan in place, and IEP accommodations were not implemented in classroom. In first grade, he was routinely restrained by 1-3 adults and placed in seclusion-- multiple times per month. At one time, when the seclusion room was occupied, the 6-year-old was pushed face first into a bean bag chair by the aide. Student was also restrained for not behaving in seclusion, coming home with bruises. School routinely ignored therapist's advice that child receive routine sensory breaks as part of a systematic behavior plan.That's the really abbreviated version. Much much more abuse happened - both psychological and physical. And now nearly 3 years later, our son who has Asperger's Syndrome is starting to remember. The memories are Tsunamis in his brain.
The outcome of the hearing will have little direct effect on us. Our son now has Post Traumatic Stress Disorder added onto his seemingly endless list of medical and psychological diagnoses. But I push on to advocate for the thousands of children this is happening to right now - right here - in the great USA. Where animals and criminals are treated better than children.
Yet I do feel a small sense of validation. There are others. We are not alone. And perhaps that should help me feel better. But because the common bond we share is crisis, I am only saddened. There are thousands of children abused by the hands of those we "legally" must entrust our children to everyday. And despite the possibility of stricter laws, I critically question whether any legislation will prevent school abuse. There are already laws that make child abuse illegal. It's the lack of enforcement or consequences to public agencies that lets it continue behind closed doors.
These children have lost their innocence, childhood and lives in a system gone terribly wrong. I thank God he was not one of the many children who were murdered by the system.
But I keep on advocating. There is much much more work to be done.
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