I think it may be time for yet another letter-writing campaign...
Back in August, Autism Speaks (who does not speak for us, as we all have been shown time and time again) put out a call for video submissions. It seemed pretty positive with the "Shine a Bright Light" wording and I'm sure many sent in submissions.
What came out of it was this video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.
It is very disturbing to those of us on the spectrum since it is directly hateful and demonising. How many parents who submitted videos knew that this was the message that was going to be delivered with their home videos?
The full transcript is at Codeman38 if you do not want to watch it. (Thanks to Codeman38 for sitting through the video and transcribing it!)
An excerpt from the transcript:
man: I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.
Why is this so offensive to me? I challenge you to take the word "autism" out and substitute it with your own name and see how you feel about it. That is how I see it. I am autistic and I take this very personally! They might as well have put my name or the names of any autistic people that you may know or love or be in there instead of the word autism!
I realize that these folks feel that there needs to be more awareness raised about autism. That's great. I realize that this is what it is like for many people who have to live with someone on the spectrum. I get that. I'd get that even without the hate spewing, though.
It's not like people don't know what autism is by now, so perhaps we could ease off on the hate propaganda and start being more objective, constructive and (dare I say it...) productive?
Or is Autism Speaks perhaps too limited by their inability to go beyond black and white thinking, lack of willingness to understand the world around them and lack of empathy towards those of us on the spectrum and our families? (You may have recognized a few so-called symptoms of autism in my last statement... that was intentional)
I'm sure that's just what parents with newly diagnosed children need: hate propaganda and a terrible outlook for their kids. (Sarcasm)
Here is my rewrite of the script to match exactly how I feel right now:
man: I am Autism Speaks. I'm making the future of your children a dark one of hate and misunderstanding, but if I can help it, it will be invisible to you until it's too late. You won't know why your children are being beaten up at school or why no one wants to associate with you or your kids until it's too late!
I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language as a parent fluently, and with every voice/opinion of an autistic person I take away or invalidate, I acquire yet another language.
I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails because of the negativity I spread like a cancer in your minds about your child's medical condition.
Your money will fall into my hands and the hands of those unethical people who will squeeze you dry just to force your child to act normal or undergo treatments that could be fatal, and we will bankrupt you for our own self-gain.
I don't sleep, so I make sure you don't either. I will make it seem like it is virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain because I have planted the seeds of hatred toward your child in your minds! You have no cure for me. I am too rich and powerful for you or anyone else to fight. I am a mega-charity. Scientists don't have the resources, and I relish their desperation. As long as they aren't doing any good for autistic people, I am still making money by giving you false hope that we are funding research and not hate.
Your neighbors are happier to pretend that autism doesn't exist, of course, until it's their child. If their children are diagnosed, well, I will plant the seeds of hate in their minds too. I am Autism Speaks. I have no interest in right or wrong nor in the actual well-being of your children. I derive great pleasure out of your loneliness and make money off it too! I will fight to take away your hope and will continue to spew out messages like this until you are so broken, you see me as your only hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' because I will continue to place the seeds of helplessness in your mind and not make any effort to help you help your child make a difference in the world.
And the truth is, I am still winning, and you are scared, and you should be. I am Autism Speaks. You ignored me. Autistic people have fought against me. That was a mistake and I will get them back for that by making sure their futures are bleak because of the hatred people will have for them.
Autistic woman: And to Autism Speaks, I say...
Autistic man: I am a father...
Autistic woman: A mother...
Autistic woman: A grandparent...
Autistic man: A brother...
Autistic woman: A sister...
Autistic man: We will spend every waking hour trying to weaken you and invalidate your message of hate.
Autistic woman: We don't need sleep, because we will not rest until you do.
Autistic woman: Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you...
Autistic woman: ...nor will the love and strength of my community.
Autistic man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autistic woman: Autism Speaks? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers...
all Autistics : ...and daughters, and fathers, and sons...
(crosstalk: several people calling out "We are" and the names of different countries)
all Autistics: We are the United Nations.
Autistic man: We are coming together in all climates.
Autistic woman: We call on all faiths.
Autistic woman: We search with technology...
Autistic woman: ...and voodoo...
Autistic woman: ...prayer and...
Autistic man: ...campaigns and...
Autistic man: ...videos of our own...
Autistic woman: ...and a growing awareness and desire to raise that awareness that you never anticipated.
Autistic man: We have challenges, but we are the best when we are allowed to have control over them.
Autistic woman: We speak the only language that matters:
all Autistics: Love for our children and love for ourselves.
Autistic woman: Our capacity to love is greater than your capacity to overwhelm, but you cannot see that and your force others to not see just how much love we have.
Autistic woman: Autism Speaks is naive.
Autistic woman: You are misinformed and ignorant.
Autistic man: We are a community of warriors.
all Autistics: We have a voice, even if it is different from yours. We are not stupid either. We know what you say to our families to get them to hate us.
Autistic woman: You think that because some of us cannot speak, people cannot hear them and that we have no thoughts, opinions or things to say. That is Autism Speak's weakness and fallacy.
Autistic woman: You think that I live behind a wall, and that people are afraid to knock it down with their bare hands. You could not be more wrong. People don't need to break down the wall, just accept who I am and open the lines of communication... something you do not seem to advocate. I am open to communication if you are willing to take the effort to try and meet me half way.
Autistic man: You have not properly been introduced to this community...
all Autistics: ...of parents and grandparents, of siblings and friends, workers, thinkers, and scientists.
Autistic woman: Autism Speaks, if you are not scared, you should be.
man: When you attacked autistic people, you forgot:
all Autistics: You came for me.
Autistic woman: Autism Speaks: Are you listening?
Me: Of course not... but perhaps it's high time you did.
I'm angry, offended and disgusted... but I am not surprised.
Time to draft a letter...
