Today, March 1, 2015, is the Autistic and Disabled
Communities National Day of Mourning. It
is usually a day to hold candlelight vigils in honor of disabled people who
have been murdered by their caregivers. When this happens, the parents and caregivers often receive lighter
sentences by the courts, if any at all, based on the idea that parents should
not be given the same sentence for murdering a disabled child as they would a
non-disabled child, and the media portrays the murders as a justified act
claiming their child was a burden on the lives of their caregivers. In the past year, more and more autistic
children have been murdered by their parents including 6-year old London McCabe
and 8-year old Jude Mirra. The local
Kansas City chapter of the Autistic Self-Advocacy Network that I belong to was
planning to hold a vigil this day that I was going to come home for, though due
to technical issues, they had to cancel it, but I want everyone to know that
just because this vigil has been cancelled, that does not mean that this day
has lost its meaning to me.
Today
is also the day that two students on my campus, 20-year Erin Hook and 19-year
old Jennifer Reeder, were killed in a car wreck. When we lose someone we love, or whose lives
were important to us, we want their lives to be respected by those around
us. Therefore, I realize we as
individuals need to take steps to alleviating the notion of autistic people as
burdens, and see them as people who should be respected for their inherent
merit and character without needing to be changed to the same respect we
ourselves enjoy, and who are all able to contribute to our society. We can make that change in perception by
changing the way we speak, treat, and view autistics. I believe by following nine basic steps in
treating autistic people, we can change the way their lives are valued and how
people treat them, and these steps are:
1. Exchange the term “Autism Awareness” for “Acceptance,”
“Inclusion,” or “Rights.” Autistic
people are not burdened by the fact that so few people know about our
weaknesses or the trouble we are said to give to others, but by them not
knowing our value to society and abilities. Awareness tends to paint a picture of children causing their families
stress by their needs rather than people of all ages who can give a lot to
society if given the appropriate opportunity to do so.
2. Let’s stop using terms like “high” and “low-functioning.” We need to stop grading autistic people
based on their ability to get good grades, go to college, and live
independently. They have a lot more to
offer than that. Everything that an
autistic can give should be valued and we need to judge them by the individual
merit of their actions and not their abilities.
3. Let’s move away from therapies such as
Applied Behavior Analysis. ABA has
cost thousands of dollars and hours of therapy trying to rid autistics of
behaviors that should be accepted such as stimming and avoiding eye
contact. Eye contact has been shown to
not be essential to communication (how would blind people communicate then),
while dozens of autistic activists have pointed out that stimming helps them
self-regulate, express emotion, and tune out distractions. Amy Sequenzia once said, “If it helps them,
it’s not ABA.” Let’s stop treating
autistic people as if they need to be changed to be accepted.
4. Let’s use identity-first language instead of person-first language. Identity-first language (autistic
person), as opposed to person-first language (person with autism) implies that
autism is a part of themselves and not some part you can get rid of. We need to stop thinking we can do that when
autistic people do not please us. It
also implies autism and personhood are mutually compatible. We wouldn’t say “person with blackness” or “person
with Buddhism.” If an autistic person
you are talking to would prefer you use person-first language, as some do, then
you should use it, and you can ask them which they prefer, but it depends on
the person.
5. Let’s stop using the puzzle piece to
represent autism. As many of us have
pointed out, the puzzle piece implies that autistic people are to be put
together, rather than already whole themselves. It suggests that their diversity of abilities is linear and that they
fit together separately when in fact, our range of abilities is more cyclical,
where one person can go from the other end at any time, and that we fit together
naturally like a rainbow, making one complete picture. More empowering symbols include the rainbow
infinity, a butterfly with “hidden” wings, a pie chart, rainbow stars, and an
infinity on a heart with wings. No one
symbol can unite all the autistic community, but as we get older, we need
symbols that are more empowering and less infantilizing.
6. Let’s stop portraying autism as a medical
disaster that causes havoc on societies and families. The idea that autism is more prevalent now
than ever before only makes sense when one ignores the increase in
professionals able to diagnose autism, the increased number of parents and
teachers aware of and looking out for autistic signs, the more individuals and
families willing to admit to autism in surveys, the increasing number of adults
being diagnosed with autism, and the increased criteria for autism
diagnosis. There is no science to it
whatsoever.
The idea that
more boys are autistic than girls only holds up when one ignores that girls are
frequently undiagnosed because autism manifests itself less in ways that stick
out in girls. Girls have learned to blend
in naturally perhaps partly due to the media and television Such as House Bunny, Mean Girls, and Legally
Blonde) telling them what girls “are
supposed to be like,” whether a beauty queen, popular girl, cheerleader, Greek
sorority girl, and so on.
We also need to
stop saying that an autistic child makes his/her parents more likely to get
divorced. Former Autism Speaks executive
Alison Tepper Singer claimed on The Oprah
Winfrey Show that if you have an autistic child, you are twice as likely to
get divorced (You can figure that one out). A study done in junction with the Autism Society of America and Easter
Seals concluded that divorce rates of parents with autistic children were
around the same to slightly lower to those of parents without autistic
children. Connecting autism to divorce
is simply a scare tactic by groups such as Autism Speaks, the National Autism
Association, and the Autism Research Institute to raise money for biomedical
research, executive salaries and expenses, and advertising with little going to
services to help autistics who need it this very moment.
Let’s also stop
using face value number statistics such as “the cost of taking care of an
autistic person over his/her lifetime is $3,200,000.” This may seem like a lot, but when divided
over eighty years, it is about $40,000 per year, about the cost of a
non-autistic person.”
We need to also
stop portraying autistic people as criminals. Reports of Elliot Rodgers and Adam Lanza have shown that there was no
correlation to their actions at Santa Barbara and Sandy Hook respectively, and
statistics indicate that autistic people are less likely to commit crime. We might also point out that nearly all the world’s mass
murderers-Hitler, Stalin, Mao, Pol Pot, Idi Amin, and Mengistu-were
neurotypical, so perhaps we should connect that to genocide.
7. Let’s stop expressing sympathy towards
parents who murder their autistic children. If mothers like Julian McCabe think it would be harder to see her
son London not live up to conventional measures of success than it would for
her to be able to see her son London again, then I don’t think she cares about
him very much. I know of several parents
of non-verbal autistic children who don’t murder them who never have sympathy
expressed for how they are willing to give their child the best possible life
at any cost. I also know several parents
who have lost a child, and their lot is not an easy one. Many never recover, and some have even
contemplated suicide. Julian McCabe, on
the other hand, was willing to go to jail, albeit shorter than she should have
been in it, in order to rid this world of her son. No evidence has been found for her to be
mentally insane, apart from Dr. Phil’s “armchair diagnosis,” which did not
excuse Elliot Rodgers and Adam Lanza from their actions, and in any case, most
insane people do not commit murder.
8. Let’s listen to the opinions of autistic
voices. All of them. Unedited. Acting on their own behalf. In
their own context. The whole
variety. Verbal and non-verbal. Autistic adults have been the ones making
awareness of the fact that autistic people can
feel empathy, have careers, get married, and be a part of society. They are frequently inspirations to autistic
children and have as much, if not perhaps more so, to offer than the so-called
licensed professionals. Autistics such
as Temple Grandin, John Elder Robison, Dawn Prince-Hughes, Naoki Higashida, Amanda
Baggs, and Daniel Tammet have all helped us immensely to understand how the
autistic mind works, and other younger-generation and not-so-famous autistics
can give us the same insight to. It’s
time to really listen.
9. Let’s be careful of the “Autism” groups we
invest in. More than we like to
admit it, so-called Autism organizations really are acting for themselves. Autism Speaks is the only autism organization
that could have no autistic members on their board, provide most of their money
to executive expenses, genetic research, and advertising instead of autistic
services, compare autism to a car wreck, being struck by lightning, or cancer,
AIDS, and diabetes combined, support dangerous fringe movements such as the
anti-vaccine movement and the Judge Rotenberg Center, fire a mother for
claiming her autistic son wasn’t given on the job accommodations, block
legislation to lessen the gap in autism services for girls and minorities,
divide autistics using labels like “high-“ and “low-functioning,” and call
themselves the voice of autism. This
group is now sponsored and promoted by groups, celebrities, and businesses
wanting to look like they are doing good such as Home Depot, Dollar General,
Yoko Ono, Alpha Xi Delta, and others. Instead of being the grassroots organization most people associate it to
be, co-founder Bob Wright used his media and business connections to reach all
these groups, but it didn’t just happen in a vacuum. The public jumped on the bandwagon, donating
and pledging tons of money to AS, which its sponsors took as good
incentive. By turning away from groups
like these, we send their sponsors a message. Even liking them on Facebook should be avoided because it sends the
message to do-gooders that Autism Speaks is doing good. On the smaller educational-youth culture
level, students looking for publicity and fame slap the name “autism awareness”
to step up campaigns to get elected to student positions using autistics low
status for their own, when in fact their records will show that they haven’t
done anything constructive for the autism community, and their campaigns will
give know information apart from their popularity, while grassroot autistic
student initiatives go undervalued as people think they’ve done their
part.
If you want to
know what is going on with these, you can look at Facebook pages such as
Boycott Autism Speaks and their website boycottautismspeaks.com, who will keep
you up to date on their list of sponsors and actions you can take to mitigate
their effect. My basic message: be aware
of who you’re giving to and express your intentions in a constructive,
well-thought out way, making autistic’s representatives accountable for their
deeds. These steps may not get rid of
all murders of autistics to come, but I guarantee they will honor the autistics
who have gone and the loved ones we know who would have suffered the same thing
in another parent’s hand. This is how
the autistic world will remember you. Listen
to me, and together we can solve the real puzzle of why courageous, honest,
hard-working, decent individuals go underemployed, undertrained, underutilized,
and undervalued. We must act
righteously, speak righteously, or be destroyed righteously. Will you all take this challenge? Will you be a champion?
Peace,
Ben Edwards
