August 7, 2012 -- originally published in commentary at DisabilityScoop.com and Live With Autism
An article, Autism Group Calls For End To ‘Infighting’ was posted today by Michelle Diament.
She reported that the "Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals...calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives."
An article, Autism Group Calls For End To ‘Infighting’ was posted today by Michelle Diament.
She reported that the "Autism Society wants to bring together all of the major autism organizations to establish a series of joint goals...calling for leaders of national organizations to come together in the same way that many companies, for example, work together through industry trade groups. While each organization would retain its own agenda and perspective, the community could work collectively to achieve specific objectives."
This posting is a copy of my commentary and open letter to ASA president, Scott Badesch regarding that article published at Disability Scoop.com's website.
The article excerpt with links to the original posting and commentary on Disability Scoop's website can be viewed at Autism Media Reports.
_________________________________________________________
"Bravo Sonja Luchini - you wrote : " They are trying to
remain relevant when they don’t have a strong voice or platform now that such
juggernauts like the offensive “Autism Speaks” folks suck funds out of the room
with their sophisticated media machine… As a previous comment referred to the
“total absence of any reference to autistic people” invited or involved shows
how most “support” agencies and nonprofits are more interested in keeping a
happy, well-paid board of directors."
[end quote]
Sadly, this comment mirrored my first response to this
article.
As to Scott Badesch's position and commentary here, I offer
this OPEN LETTER TO HIM:
Dear Sir,
I wrote to you months ago of my need (as an adult autistic
who has three children on the spectrum) for supportive services that could
include access to ASA's resources for information and referral. I outlined to
you (or your assigned representatives who apparently ignored my email and
important requests for support and referrals) that our family is below the
federal poverty guidelines, directly due to our inability to secure and
maintain employment and that I was unable to contribute or join the ASA in
order to utilize any web-based research or advocacy information which would
only be proprietarily available to those individuals or families who had
resources to PAY for them.
I also mentioned that
the same lack of access to online/digital resources holds true for the
Autism Society of Alabama, whom I formerly supported, even presenting as a
consumer advocate for a Department of Rehabilitation Services Vocational
Rehabilitation workshop, at the Autism Society of Alabama director's request.
For this writer, an autistic individual, your parent
organization and its subsidiary state affiliates, apparently have no qualm of
conscience as you maintain a "NO PAY, NO PLAY" policy, with respect to needy adult autistics
in the U.S.
My plea for a quality and competent response from your
'advocacy' organization gleaned NO RESPONSE from yourself or your paid representatives.
Mr. Badesch, you
stated here in your comment - "We can all disagree, but our infighting,
which far too often is a characteristic of our community, needs to stop. It
does no good and it certainly results in a lack of forward progress that is so
very much needed."
Forward progress, indeed, is needed.
Sir, in my letter to your organization, I asked you to
specifically outline what portion of your fundraising initiatives would be
allocated to assist adults and transitional teens like myself and my children,
who find that there is absolutely no direct agenda, proposal, program or
services specifically formulated and targeted by the ASA to address our
quality-of-life issues, all of which CENTER on vocational achievement and
access to age-appropriate services.
Neither you personally, nor your representatives, GAVE ANY
RESPONSE TO MY SPECIFIC QUERIES. You never even acknowledged receipt of my
attempts to contact your organization, when I called your office to notify you
of my family’s need for services.
Yet the ASA continues to fill my inbox with REQUESTS FOR
DONATIONS.
I demonstrated due diligence, sir. Where is yours?
Even I, as an autistic, have a learned ability to display a
bit of empathy toward your plight and likely, all of us out here in the socially
functional population of autism-affected individuals, get this message stated
so effectively by Ms. Luchini, here: Autism Speaks has diverted the lion's
share of funding coffers as a result of their above-referenced media
mechanisms.
We also recognize that Autism Speaks’ ability to move into
the void that the ASA left present for years through outmoded and ineffective
services models, must now make more difficult Mr. Badesch, your goal and the central focus of your role
at the ASA, to maintain funding for your
employer's non-profit corporation.
Meanwhile, we, the autistics who have the ability to
self-advocate, continue to live with a dire certainty:
We are not IDEALOGUES seeking to promote our pet theories of how to live as autistics in this culture. We are PEDAGOGUES, living in the trenches of autism advocacy, wondering, like my Asperger's husband and I do, how the h*ll we will get through the practicum of surviving this month on his $687 SSDI check, when neither of us can find a job to support our autistic children.
We are not IDEALOGUES seeking to promote our pet theories of how to live as autistics in this culture. We are PEDAGOGUES, living in the trenches of autism advocacy, wondering, like my Asperger's husband and I do, how the h*ll we will get through the practicum of surviving this month on his $687 SSDI check, when neither of us can find a job to support our autistic children.
Our reality on the front lines of this issue is what causes
us dissatisfaction with ASA’s exclusion from the press releases of your ‘conversation’
regarding this initiative, those autistic individuals and existent self-advocacy
organizations, who are able to SPEAK for themselves.
There is also the apparent deadline-produced oversight or
intentional exclusion of some of these organizations by Disability Scoop's
journalist, Diamanti.
Did Ms. Diament attempt to contact Ari Ne'eman for a
comment? Did she mention any autism self-advocates or self-advocacy
organizations in her article above?
According to her piece, she stated that "Inquiries from
Disability Scoop to three other national groups advocating for individuals with
autism about the proposed summit did not yield any immediate response."
Since we are left, as usual, Mr. Badesch, with a paucity of
inclusive and applicable information funneled through the PR-and-media-darling
"BIG TWO" organizations’ positions, no wonder there are concerns and
cries of "foul play" in the face of such present domination in the
landscape of autism advocacy.
I agree wholeheartedly with the commentary of Dadvocate here:
“This “public call” from the Autism Society requesting everyone to “cooperate” seems a touch self-serving to me.”
Further, I agree that,
I agree wholeheartedly with the commentary of Dadvocate here:
“This “public call” from the Autism Society requesting everyone to “cooperate” seems a touch self-serving to me.”
Further, I agree that,
“ASD issues (and the philosphical approaches to them) are a much different proposition than the examples Mr. Badesch cites, for way too many reasons to list here. His comparisons are not valid. However, I do believe that on specifically targeted issues (like safety, adult funding and services, employment, and housing), our community can and must come together to effect policy change. I think the only way that happens is to keep it issue specific initiatives rather than broad organizational cooperation because I don’t think it gets too far beyond “Welcome to the meeting” with the latter approach. But I could be wrong, of course.”
No Dadvocate—you are absolutely correct.
I only hope that you, Mr. Badesch and others here can
benefit from this educator/advocate who amplifies the truth sung in the
streets.
It is time to admit that your broadly-scoped ambiguity regarding ASA’s funding and advocacy initiatives, like Autism Speaks’, have intentionally been designed to maximize your efficacy in maintaining your organization’s operational existence, not my autistic family’s.
It is time to admit that your broadly-scoped ambiguity regarding ASA’s funding and advocacy initiatives, like Autism Speaks’, have intentionally been designed to maximize your efficacy in maintaining your organization’s operational existence, not my autistic family’s.
Perhaps, you missed my pleas for information and advocacy support, amidst all those important incoming donations.
Sincerely,
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