Sunday, March 23, 2014

Surviving "Sounding The Alarm" of Blue Fear - I Won't Be Lighting Anything Blue April 2nd

It is a bit ironic that having been born into a Catholic culture, one of my favorite litanies is one created for a fictional religious order. It is the Bene Gesserit Litany Against Fear, and goes as follows:

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.

I will face my fear.
I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.

Only I will remain.
from the novel Dune by Frank Herbert
Each year beginning the second of April, Autism Speaks rolls out the apocalyptic fear of epidemic pestilence circus. Everywhere my son goes, he will be hit with the news that he is the most unwanted person on the planet. He is a reason to to panic, to fill the coffers of Autism Speaks with funding to assist them in spending millions of dollars on ads, signage, slick lobbying campaigns all to silence any voice but that of their understanding of what they want. Because of course what I or any other autism parent wants, what my son or any autistic person wants doesn't matter. It only matters what mega charities who don't represent autistic people, and lately don't represent a growing number of families want. If you don't believe that the rate of autism is rising at such an alarming pace that if we don't eradicate it everyone in the world will be autistic, well then you are forcibly silenced.
Yes, my son and the majority of his peers will be donning their headphones against the noise, the flashing seizure inducing insulting spectacle that will drag on. All month people will be telling me that my son should not have been born. Because he doesn't use verbal speech, he is less than others. He needs to be dealt with. And they want everyone to know that. Well that is all a crock. We are not doing it.
Fear is the downfall of civilizations. It is the catalyst of ignorance. Fear driven campaigns serve no more purpose than fear driven research. We the parents and loved ones of autistic people, have tremendous power that we choose to passively give up to mega charities who claim to speak for us. They don't. What we should be doing is looking at what our people need. Where the millions of dollars in both federal funding and the funding well intentioned people will be raising in April should go. I for one would like to stop giving organizations the money to promote messages about autism that are harmful to my son and put him at risk for being harmed because he is different. "Sounding the Alarm" presents my son as having some variety of infectious disease and Autism Speaks has tried to make their voice crush mine by using a research psychologist and medical model verbiage.  If others can't accept that loved ones are different that is on them. Do they then have the right, by virtue of power and societal position, to dictate what happens to my son? No they do not. I am tired of my son having to go through this every April. He has enough challenges without the stress of Loud Blue Ableist April. 
Pity is almost as dangerous an emotion as fear. Pity distances people from its object. Pity dehumanizes. April Autism Awareness month as it is practiced now says "Pity my son and his peers." "Fear them." "Mourn the way they are"." Give up your right to advocate for your children". "Your children should not exist"." Why do we allow this to happen? Stop letting others tell you what autism month should mean. Cease allowing any mega organization to control the conversation about your loved ones. Don't let them treat your children like side show attractions at a circus. Teach them the difference between pity and compassion. Teach them the difference between fear and respect. 
What we need to do on April second is to take the money we would spend on blue light bulbs and give it to any local organization that has done anything directly to help your autistic loved one. Because when you buy anything blue next month part of that money is going to find its way to Autism Speaks. You will be giving Mrs. Wright and the tragedy wagon another year to peddle their alarm of doom and gloom to anyone who will give them funding in return. Well don't you want your loved one to have that funding? Then stop spending it on blue light bulbs! Stop dying your hair blue. Just. Stop.
What we will be doing on April 2nd is telling everyone we are not ashamed of our son. We loved him before he came into this world. He is a wanted child. We want him to succeed. He is in the fight of his life to be able to grow up and live as autonomously as possible. He deserves better than a month of mourning about the fact that he exists. I won't subject him to that shit. It isn't going to happen. 
I am a proud autism mom. Proud. If you love your children, then support the idea of an autism month that promotes respect for them, presents them as people with the right to live in society as everyone else does. Support funding going to research that is centered on them and creates a better quality of life for them. Look as organizations that directly help them and have people who are like your children in decision making positions. Because those people know what the future holds for your children when they grow up and they want your kids to have it better than they did. Respect that.
 Each time I hear Autism Speaks this song I used to hear on Hee Haw seems to be playing in the background. Here it is:
(video description: four white males in overalls and hats holding white jugs of moonshine singing "Gloom, despair, and agony on me, deep dark depression excessive misery, if it weren't for bad luck I'd have not luck at all, gloom despair and agony on me.. while a man wails in tune to the chorus)
It began and ended a comedy sketch. Autism month needs to rise above the melodramatic and tragic. So my idea is that you join me in doing your own thing this April. Start here:

s
take this and add your favorite family photos. Tell people what makes you happy about your autistic loved ones. Show them. Give hope and support to families not despair and imaginary scenarios of horror and doom. 

Much Love

2 comments:

  1. Made at TechShop San Jose by an autistic artist.
    https://www.etsy.com/listing/183863864/no-puzzle-pieces-autism-pride-heart?

    ReplyDelete
  2. Hi Kerima! I have a quick question about awareness and was hoping you could email me when you have a free moment. Thanks! Hope to hear from you soon. :-)

    ReplyDelete