Day 28: Acceptance is not Awareness

*Today I'm linking with a fellow blogger Jennifer, aka Full Spectrum Momma, on today's topic.  You can check it out here.  

The month of April nearing its end.

Autism Awareness Month is winding down.

For many, this is a great relief.

Why?

Because awareness is very different from acceptance.

Are these words so really so different?

In a word, yes.

The distinction is quite important because the Autism Awareness movement, sponsored by organizations such as Autism Speaks, has a very particular agenda.

This month has morphed over the years into a publicity campaign designed to create deep rooted associations between autism and tragedy, devastation, epidemic, and fear.

We see messages like these on our Facebook pages:

Or this:

No smiles for either of you...

Or this one on billboards or buses driving by on the streets:

Some of you may not see anything wrong with these ads. 

You may view them as public service announcements, calling for an end to a devastating disease that ruins the lives of many.

Sadly, this has become the popular view of what autism is.

Sadly, these are some of the first messages that a parent sees when their precious child is diagnosed with autism.  They are among the first hits on a simple Google search of the word "autism".

The video “I am Autism” produced by Autism Speaks portrays Autism as the bogeyman who steals our children away.

This is why awareness campaigns concern me greatly.

Because, unlike cancer and diabetes, autism is not a life-threatening disease.

Autism is not something that person "gets," as the ad above implies in a sadistically humorous parody of the "Got Milk" campaign.

I don't seek to minimize the struggles that many autistic individuals face every day.  These are very real.

Autistic individuals may live with challenges, but they also have many wonderful traits that can enrich their lives.  These strengths rarely become part of the conversation unless we are discussing prodigies or savants or those who have "overcome" their autism.

Contrary to popular belief, autism is not something that can be "cured".

Ask an autistic adult and they will tell you that autism is a part of who they are.  It is an integral part of their identity, both the challenges and the strengths.  

And so, when ads such as the one above call for an end of autism, these adults see this as a call to wipe out people like themselves. 

Ads like this paint a bleak picture of the futures for children such as mine.  This leads to fear and devastation in the hearts of parents, but, even worse, it leads to feelings of worthlessness within the autistic person.  Who wants to be viewed as a burden to society or something that needs to be eliminated? 

Which leads me to the concept of ableism.

I had never even heard of the word ableism until about a year ago.

I had to look it up in the dictionary, and this is what I found:

Ableism is a form of discrimination against people with disabilities. 

It is the belief, whether conscious or unconscious, that non-disabled people are inherently superior.

Ableism is believing that people are automatically better, or have better lives, or have better brains or bodies because they aren’t disabled. (www.autismacceptancemonth.com)

Ableism is often so subtle that those of us without disabilities may completely miss it if we’re not looking for it.

Sadly, however, examples of the ableism exist all around us.

We see it in the belief that individuals with disabilities should learn to fit into our world, and when they cannot adapt, then they should be put in a more restrictive, isolated setting.

We see it when others make fun of those who act differently.

We hear it in jokes made at the expense of those with disabilities or when people say things like "He's acting so autistic". 

The mindset is reinforced in books, television, and movies.

Autism Awareness Month is coming to a close, but the question remains- 

Are we as a society truly more aware?

And, if so, what “awareness” messages have we received?

That it is okay for a mother to throw her autistic child off a bridge because he is just too much to handle?

That millions of children across the globe are in danger because of the “disease” known as autism?

That autism will steal our children away if we’re not watchful and vigilant?

That autistic individuals are lepers and “the least of us”?

When we listen to these messages, we must consider who is doing the talking.  In this case, powerful organizations such as Autism Speaks are sending certain messages loud and clear.  Meanwhile, the voices of autistic adults are often missing from the conversation.

Certainly challenges exist for autistic individuals and we need to work together to find solutions to face these challenges.

More job opportunities are needed for autistic adults.

Better housing options are needed for the growing numbers of adults aging out of the system.

We need more innovative communication tools to assist those who cannot speak through traditional methods.

Our society needs to get a lot better at finding ways to accommodate those with sensory differences.

There is so much work to do.

But our conversation cannot end there.

We must look beyond our definition of normal in order to recognize the true worth and potential in others.

We must recognize ableist thinking when we see it and call it for what it is.

It begins with eliminating certain words from our vocabulary, starting with the “r-” word.

It begins with changing our beliefs about the capabilities of others.

It begins with listening to the voices of those who we say we are supporting in the first place.

Awareness is not nearly enough.

It begins with acceptance.

It ends with respect.

Why I Will Not Speak for #Autism Speaks

           

Ben is gently brushing his new bunny that he made at a recent trip to Build a Bear.  Build a Bear is one of the companies who have withdrawn their support of Autism Speaks.

             Recently a colleague of mine approached me about an opportunity that she had heard about.  She explained that there was an autism group getting ready to do an awareness walk, and they were looking for input from educators who were also parents with children on the spectrum.  My initial reaction was excitement, but then I paused and added, “I’d love to participate in this, but if the organization is Autism Speaks, I’m going to have to pass.”  She wasn’t sure of the name of the organization, so she said she’d find out more and get back to me.
             I know it must seem strange to those who are new to our autism community to think that I would dismiss a charitable organization devoted to the field of autism, so I thought it’s probably time that I post here about why I cannot support Autism Speaks.

            If you know me in the real world, you know that I’m a pretty even-keel person.  I am a moderator, a person who seeks multiple perspectives before making a decision, and I rarely dismiss any point of view.  I try to be thoughtful and reflective.  As my mother would say, “I seek the balance in life.”  But, on this matter, I feel I have to take a stand, and I’ll explain why.

            Autism Speaks is by far the largest charitable organization out there right now in the autism community.  Celebrities endorse it.  Companies sponsor it.  (Luckily Build a Bear recently withdrew their support!) Their annual walks attract millions of participants, many marching with T shirts that have puzzle piece signs (their signature logo). Places all over the world such as the White House and the Empire State Building turned on blue lights in April as part of their “light it up blue” campaign that sought to raise autism awareness. 

            Autism Speaks is so mainstream that their ideas are often the first ones that families who are new to the world of autism read about.  A quick Google search about autism will lead you directly to their site. 

            Please understand- I fully support autism acceptance.  Autism Speaks supports raising autism awareness.  This may seem like a small difference in terms, but, trust me, it is not.  Sadly, the approach that Autism Speaks uses to raise awareness has caused the autism community to become more polarized rather than bringing us together and valuing differences.

            On the website for Autism Speaks, you’ll find this description of the organization.  “Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we've been able to accomplish and look forward to continued successes in the years ahead.”

            So why am I against this organization that has such strong support across the country?  Others have written on this topic before, much more eloquently than me.  You can read some of these posts here and here.  

            When I first started learning about autism after my son’s diagnosis, I read many books and watched countless videos on the subject.  It quickly became clear that our community is a community divided.  Autism is a spectrum and autistic individuals have characteristics that range from completely nonverbal and requiring extensive support to meet their basic needs all that way to completely verbal and fully capable of independent functioning, but requiring extra support in the areas of communication, sensory processing, and/or emotional regulation.  Each individual is unique, much like a snowflake.  No other exceptionality has so much variance within it.  My son falls on the more verbal, independently functioning side of the spectrum.  I cannot speak for the experiences of others whose needs differ from those of my son’s. I certainly do not seek to minimize the challenges that come with meeting the daily demands of caring for a child who needs this round the clock support.  These children grow up to become adults who may continue to require this same level of care, and certainly services need to be in place to support these individuals.   

            But (and this is a very big BUT), even those individuals on the most, for lack of the better word, severe end of the spectrum require the same level of dignity and support as does my son.  Just because a person cannot talk does not mean that he has nothing to say.

            And while I cannot speak for the experiences of others, I also cannot speak to my son’s experiences.  Only he can truly explain what it is like to be Ben.  I am not autistic.  I simply live with a person who is.  Autism Speaks, as it says in their name, speaks with a great deal of authority for those on the autism spectrum every single day.  However, Autism Speaks is speaking on the behalf of autistic individuals without ever consulting them first.  I’m going to make a broad comparison here. This would be a little like me speaking for a men’s group (Let’s call the group Men Speak) because I live with my husband and therefore know all there is to know about men.  You can see the absurdity in that.  I’m a parent of an autistic child.  I care for Ben every day and I know him very, very well, but I’ll never truly know what it feels like to be Ben.  This is why Autism Speaks absolutely should have autistic adults as part of their counsel.  They did have one person, John Elder Robison (author of the book "Look Me in the Eye"), but he resigned for reasons that you can read about here.

            If Autism Speaks did bother to ask autistic adults how they feel about the organization’s message, I don’t think they would like what they have to say.  If you were to ask an autistic adult how Autism Speaks makes them feel, they would most likely tell you that hearing things like autism is a tragedy and they are a burden to society makes them feel like they are worthless too.  Words can be very, very damaging, and for those who often think on a very literal level, this has the power to be absolutely devastating. 

             Autism Speaks views autism as a tragedy.  They have said so in their marketing campaigns.  One very famous commercial published by Autism Speaks called “I am Autism” makes autism out to be the bad guy stealing away our children from us.  It was actually produced by the same person who directed third Harry Potter Movie.  In the film you hear a deep, ominous voice narrating, saying things like  “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”  Autism Speaks uses fear tactics and inflammatory words because they believe that they need to scare the community at large into supporting the cause.  They use terms such as “autism epidemic” and “devastating” to garner support.

            Autism Speaks believes that autism is a disease that needs a cure.  They spend the overwhelming majority of the millions of dollars that they receive on researching to find a cure for autism.  Only 4% of their budget goes to “family services” to support the autistic children, and especially adults, already in the community.  And this is a huge problem because, as I mentioned before, a growing number of children are becoming adults who will require community supports such as housing, care, and job-related training and skills as needed. 

             We have to watch what we say around our children.  The former vice-president of Autism Speaks said on a PR video “Autism Every Day” that she has contemplated driving her car off the bridge with her daughter in it because of the challenges that her daughter brings.  She said this with her daughter in the room.

            Suzanne Wright, on of the founders of Autism Speaks, recently spoke at the Vatican and, in her speech, compared autistic individuals to lepers and “the least of us”.  Jess from “A Diary of a Mom” writes about this particular speech here.

            Can you see how I would not want my son hearing any of this?  My handsome, amazing little guy is not a burden, nor a leper, nor a tragedy.  He does not need to be cured as he is not sick.  If he had cancer, I’d be looking for a cure, but his brain is simply wired differently than mine, which causes his approach to the world to be different than many are accustomed.  This does not make him “the least of us.”  If anything, I’d argue that he is “the best of us.”

            Suzanne Wright would tell me that her organization is not talking about my son when they speak of the tragic epidemic (though she would conveniently use his diagnosis in her calculations of the numbers of those on the spectrum).  She would tell me that the tragedy and the devastation are referring to those on the more severe end of the spectrum, those who require constant care, those who are nonverbal or extremely aggressive or completely unresponsive to others and lost in their own world.  To which I would say this- don’t those children deserve the same level of respect as my son does?  Those children are also not a tragedy.  They are precious children.  And, whether they show it or not, they are also listening to what we are saying about them.  As they are becoming adults, they are speaking up and we are realizing that they heard and internalized so much more than we ever could have imagined when they were children.  They don’t deserved to be driven (or thrown) off a bridge.  They need support.  Their parents need support.  When they become adults they may continue to need supports.  But, sadly, most of the conversation (and finances) are not centered around creating opportunities and services for those on the spectrum.  This is what scares me most.  We’re so busy trying to find a cure and scaring everyone that we’re not spending time nor nearly enough funds towards finding solutions to the very real needs that are here now.

            So that, my friends, is why I cannot and do not support Autism Speaks.  There are many, many more examples, sadly, of the damage that this organization has done and continues to do.  I know that they do good as well.  They do offer scholarships in communities and job opportunities.  But I cannot associate with an organization that looks at my son, and those like him, as lepers and tragedies.  If you choose to support Autism Speaks, I respect your decision, but I wanted you to be informed as to why I cannot support them.   
            
             If you are looking for an organization to support, I would recommend  The Autistic Self Advocacy Network.  They are run by autistic people, for autistic people and their families.