When
Suzanne Wright’s op-ed piece “A Call for Action” was published November 11,
2013, you can say it accomplished that goal. The backlash against Ms. Wright
has been swift and hard. In addition, there is an organized effort to boycott
Autism Speaks. Boycott Autism Speaks Many
friends and family have joined the cause and asked us where we stand on the
matter. Well, I can say that we’ve read a lot of material, been on numerous
websites and debated the issue. My wife Marian and I have begun our own version
of the ESPN show “First Take” (Embrace Debate). Believe me, I am not making
light of this issue at all as the debate has been intense and emotional.
Furthermore, I have implored Marian to blog her views and post them for all to
see. After all, she is not only an autism advocate; she is the mother of two
teenagers who happen to be on opposite ends of the autism spectrum. While we
agree on many issues, we don’t agree on all of them as they relate to an
all-out boycott.
Autism
Speaks was founded in 2005 and in its first year raised over $40 million
dollars in donations and fundraising (AutismSpeaks.com). It also states they
received a $25 million dollar donation from a single donor to launch their
organization. It is clear the Wrights, as a high profile couple with plenty of
financial backing could make a real difference and help families. However,
their mission seems to focus more on science and research, looking for causes,
prevention and a possible cure rather than direct family services. That being
said, the one issue that really bothers me is that the word advocacy is missing from their mission
statement yet that is what they often refer to themselves as; a leading autism
advocacy organization (AutismSpeaks.com).
Another major
problem with their mission statement is that they say “Autism Speaks aims to
bring the autism community together as one strong voice” (AutismSpeaks.com).
Judging from what I’ve seen recently, they have not only failed to bring the
community together, they’ve succeeded in polarizing it. They’ve fractured a
community and now have people taking sides for or against arguably the most notable
autism organization in the world. Looking deeper at their mission, particularly
their science and research accomplishments (which are annually triumphed on
their website), couldn’t one playing devil’s advocate ask the question; if
so-called strides are being made year after year, how come the rate of children
being diagnosed is increasing? I can’t help it but I am cynical at times, a
very-cautious optimist so to speak. What context are these successes being
measured?
I
believe Jon Elder Robison, who resigned his position at Autism Speaks soon
after Ms. Wright’s article, says it best. “Many autistic people are aware of
this dichotomy. Some of us feel “totally
disabled” and others feel “totally gifted.”
Most of us – I’d venture to say – feel both ways, at different times,
depending on what we’re doing at that particular moment. The point here is that
there are many ways autistic people can choose to live their (our) lives and
all are valid and deserving of respect. Some people want a little help, while
others face major challenges"(Robison, 2013). His complete blog is a must-read
at the following link http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html and I urge everyone to do so.
When I
read Ms. Wright’s op-ed piece I was immediately drawn to the negativity of it.
Her choice of words was calculated and deliberate, designed to evoke a certain
mood and emotion. Missing, gravely ill, and forgotten is how she describes
autistic children. Despair, fear, and not living but existing becomes synonymous
with parenting autistic children. She recounts various scenarios and after each
one she adds in bold letters This is autism
(Wright, 2013). And it goes on and on. For example, lines like
“on bad days, they are depleted. Mentally. Physically. And
especially emotionally…. This is autism
(Wright, 2013). Ok Ms. Wright, we get it okay? You’ve painted the gloom and
doom picture.
As a
step-parent of two teenage boys on both ends of the spectrum, I’ve been part of
the meltdowns, difficult behaviors, and yes extremely rough times. However
something my wife told me has resonated and puts those times into focus. She
said that she read it somewhere and the saying is “my son is not giving me a hard time; he is having a hard time”.
My
response to Ms. Wright is to use her very own format and describe how wonderful
it is to love someone with autism. Right down to the point where you want to
spend the rest of your life being a part of their life, experiencing new things
with them and in my case, planning a new career working with that very community
who feels the same way. This is autism.
-Watching my son play the drums along with a Beatles CD
and posting it on You Tube to share. This
is autism.
-Going to Special Olympics and seeing the competition,
excitement, joy and overall emotion of the day as these athletes go way outside
their comfort zone. This is autism.
- Reading a Facebook post from my cousin Roseann in
California and sharing her joy as she celebrates her son calling and inviting
one of his friends over after school on
his own. This is autism.
-Playing the guitar and watching an entire group of students
on stage, proudly singing songs for their Thanksgiving show. This is autism.
-Knowing how much your child loves trains, so you take
the Metro-North Rail Road into Grand Central Station and look at the trains all
day, never going out of the station into New York City. This is autism.
-Sitting in the stands at a high school football game
with my two sons and daughter cheering the team that my oldest son coaches for.
This is autism.
-Going to Albany to start the process with an agency for
your son to attend a college-experience program after high school because he
wants to go to college. This is autism.
-Being in Disneyworld with the entire family as the 6 of
us experience the vacation of a lifetime and make memories that no one could
have planned. This is autism.
I hope
I’ve been able to make my point and show how misguided I believe Ms. Wright is
in her views. Spreading fear and negativity is not the answer. There’s plenty
of that to go around. What I would like to tell Ms. Wright is that we need
increased awareness and understanding, especially from Autism Speaks. A spectrum,
according to Dictionary.com (2013), is a broad range of varied but related
ideas or objects.
And as asserted by John Elder Robison, (2013), “As
a progressive society I argue that it is our duty to develop ways to meet the
very diverse range of needs our community has”. It has become clear that in
fact, Autism Speaks does not speak for everyone. Would it be in the best
interest of an organization that can still do plenty of good for those in need
to ask Ms. Wright for her resignation from the Board? I believe so. That may be
the first step towards moving forward and evolving as an organization. Uniting
the autism community will take time and a commitment towards inclusion. Autism
Speaks; it’s now time for you to listen!
References
2005
Highlights, Raising Public Awareness,(n.d.) retrieved from http://www.autismspeaks.org/about-us/annual-reports/2005-highlights
About Us, Autism Speaks History (n.d.) retrieved from http://www.autismspeaks.org/about-us
Mission, Autism Speaks (n.d.) retrieved from http://www.autismspeaks.org/about-us/mission
Robison, J. (2013, November 13). I resign my roles at autism
speaks. Retrieved from http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html
Spectrum, (2014),
definition retrieved from http://dictionary.reference.com/browse/spectrum
Wright, S. (2013, November 11). Autism speaks to Washington:
A call for action. Retrieved from http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
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