January 12, 2015, by Autistic
activist Amy Sequenzia, posted on the Autism Women’s Network site
Dear Pope Francis:
I think I am supposed
to call you “Your Holiness”. I am here to teach you some important things about
Autism, about being Autistic, and about Autism Speaks.
You recently met with
Suzanne Wright, co-founder of Autism Speaks, and your lack of understanding
about my neurology and about who I am makes it look like you don’t care about
social justice.
Yes, I am Autistic,
Disabled and proud.
I don’t want pity.
I don’t need Ms.
Wright’s hateful words.
Autism Speaks does not
speak for me.
I will use her speech
to teach you and show why cure and prevention of Autism go against my human
rights.
I will “translate” the
speech, I will tell you the real meaning of Suzanne Wright’s words.
First, you need to
know what Autism Speaks really stands for: hate.
Autism Speaks raises
money by demonizing people like me, and by martyring parents, as if parenting Autistics
is a burden, and a tragic living.
Autism Speaks also
ignores Autistic adults, people like me, very disabled and very proud of my
neurology.
Now, the speech.
Suzanne Wright starts
by saying Autism is a health crisis.
Wrong. We are not
diseased or Disordered. Autism is our identity, like the color of our skin. Is
there a “black people health crisis”? An “Asian health crisis”? I think you get
my point.
She says that “Autism
families” suffer. She can’t even use the correct words. Autism families are
only a thing if all the members are Autistic.
The only suffering
comes through her hateful rhetoric and stigmatization.
What she really meant
was that in her distorted view of Autism, all Autistics cause suffering to non-Autistic
family members. See how she does not see us as sentient beings?
Then she talks about
how everyone is tired of us, the extreme work for no reward. She does not sound
too concerned with her faith. Doesn’t the Catholic Church teach that heaven is
for the poor and humble?
She mentions the lack
of information about Autism, purposefully leaving out how Autism Speaks, under
her guidance, misinforms the public.
She briefly mentions
her grandson, trying to paint him as pitiful. Well, I am an adult with a lot of
needs and my friends say I am pretty awesome.
Suzanne Wright not
only diminishes Autistic people’s experiences of the world, she also shows her
ableism toward people who have Hansen’s disease, referring to them as lepers.
To her, we are to be
viewed as undesirable, unapproachable, not to be touched, while our parents are
saints, doing (according to her) the ultimate act of love a parent of an Autistic
person can do: look at us.
This is a very messed
up statement, from a supposedly loving grandmother.
To Suzanne Wright, Autistic
people do not deserve appreciation or respect for just being. We are only to be
valued if we can be, act and look “less Autistic”.
Then, she calls us not
human enough. She states that we don’t learn, worry, rejoice, live. She decided
that our dreams and wishes are unimportant and not worthy of anyone’s
attention.
What Suzanne Wright
says her organization does is simply a lie. The truth is that Autism Speaks
uses only 3% of the donations it receives to help Autistics and their families.
Autistics adults are not even considered by the organization. Most of the money
raised is to enrich executives and to find a genetic marker, with this objective:
selective abortions. And she brought St. Francis to the conversation. How can
the Catholic Church reconcile it’s rejection of abortion, yet allow a speech
from someone whose mission in life is to find a way to, through selective
abortion, make sure people like me do not exist?
The isolation,
harassment, shame and disgrace she mentions should be spelled out as the
mission statement of her organization, since that’s what Autism Speaks engages
on with full force.
The blue light she
talks about? It magically turns into green dollars, used in propaganda that
demonizes us, martyrs our families, and ignores our voices. Propaganda like her
speech to you.
The lies about how she
really feels about us don’t change the reality of what her organization
promotes: her “village” is not welcoming to, or safe for us, Autistics who just
want to be, to exist.
Suzanne Wright lacks
humbleness. She believes that she is on a mission to rid the world of Autism,
of Autistics. She does not listen to the many Autistics saying that our lives
are worthy, that she is wrong and hurtful. But her goal of portraying Autism as
a devastating disease, of portraying Autistics as less than useless human
beings, is advanced by her savvy marketing skills. She uses fear to spread hate
– packaged as compassion – and she uses her wealth to gain access.
She gained access to
you, dear Pope Francis.
She spread her lies,
disguised as a call to love.
You now know the
truth, easily confirmed by how she directs her organization.
I am Autistic,
Disabled and proud.
I know what Autism is.
Your Holiness, are you
going to silence me? Are you going to deny my wholeness, my perfect humanity,
as imperfect as all humans are, still deserving of a life free from hateful
attacks?
Suzanne Wright has an
agenda and it goes against my right to exist.
What are you going to
do in support of my right to be, just as I am?
What are you going to do about all Autistics
right to exist, just like we are?