Please, no more Londons, Issys, Alexs, Gerhards

Trigger warning: child abuse, child murder, disabled abuse, Nazi genocide, euthanasia, ablest language

Another autistic child killed by a parent. A lot of people I follow on the interwebs will say this is about lack of services or a parent pushed too far.

I think it’s about the same things that led white men to lynch men of colour, led men to batter their wives to death, led George Zimmerman to shoot Trayvon Martin and on and on, ad infinitum. Someone thought their lives mattered more than someone else’s.

I wrote that on Facebook the other night. Continue reading

Blue is only one portion of the spectrum

Anyone with a calendar can tell that I am writing a post about Autism Awareness Day two months late.

I am the kind of person who needs time to digest and process some things. Sometimes I am quick to leap in to an issue, but other times I need to let my ideas swirl around a bit. Sometimes a catalyst pops up and helps me to focus my thinking a bit.

Please, don’t worry. This post isn’t something tedious about how I think or why I post less frequently than others.

No, this post is about how autism awareness makes me a little uneasy. The catalysts that finally made me post were that so-called warrior mom who wants to be in Playboy again and folks advocating bleach enemas.

2011 was the year I first became aware of Autism Awareness Day. Although my son had received his diagnosis some years before, it was only through being active on Twitter that I found out about it last year. I delighted in talking to someone wearing a blue shirt about it on April 2nd, but felt social media campaigns about it were pretty much preaching to the choir.

Having been a fundraiser for 15 years, I know a fair bit of the why’s and how’s of awareness days. We do them because we want to energize those affected by an issue, create a critical mass of people talking about an issue and sometimes we even hope to find new supporters and donors.

What happens, though, when something like Autism Awareness Day doesn’t speak in the voice of those most affected: people who are autistic.

Organizations like Autism Speaks and Generation Rescue devote great resources to researching a cure by investigating, among other things, vaccines. Finding a cure for autism necessarily means a world view that autism is a disease and can be treated using a medical model. We know that autism is not a disease and is a life-long condition. Yes, drugs can be taken to deal with some aspects of autism, but ABA is the gold-standard treatment–not a cure.

Being a bit of a research-reader, I do not believe vaccines are linked to autism. When my youngest daughter’s school recently sent home a note about an increase in whooping cough in her region, I was glad that all of my kids have received their vaccinations.

So, if autism is not a disease, why spend so much money looking for a cure?

And why blue?

Autism Awareness Day has become closely linked to Autism Speaks despite the day being proclaimed by the UN. It could be a day to celebrate neurodiversity and lobby for more insurance coverage in the United States or shorter wait times for IBI in Ontario or more diagnoses in France, but it has become “Light It Up Blue” and when we walk into a certain hardware chain we see the blue light we could buy. That blue light does not fund any part of my son’s IBI and nor did it help reduce wait times in my region for his therapy.

No, that blue light funds a large American charity devoted to something I don’t believe in at all.

Yet, I want something of what they want: more people talking about autism.

A friend wrote to me about how Autism Awareness Day was going to be observed in her son’s school. The school wanted children decked out in blue t-shirts as part of an awareness & fundraising campaign. The child didn’t want to have attention drawn to him as a child on the spectrum. He wore another colour shirt. The school with the best of intentions wanted to be inclusive yet she did not consult with the families most affected by asd and did not ask the child what would make him comfortable.

Instead of blue-washing Autism Awareness Day, a number of people on the spectrum decided that another day was needed. November 1st is Autistics Speaking Day and it offers those of us not on the spectrum the opportunity to see what is important to people who are autistic. It raises true awareness about autism from those who know it best. The idea came from Corina Becker who wrote about it on her blog, No Stereotypes Here.

Around April 2 there were a lot of posts from adults on the spectrum that made me realize how conflicted I am with Autism Awareness Day. One that really struck me was It’s Bridget’s Word: Autism Exhaustion Month.

Some folks have been writing that awareness is not enough. We must strive for acceptance. I would argue that acceptance is not just about what people on the spectrum may or may not achieve, it is also accepting their voices are the most important constituency in the autism communities.

Stuart Duncan writes on his blog, Autism from a Father’s Point of View, often about acceptance. The fact that he has recently been diagnosed on the spectrum adds even more weight to his reasoned and thoughtful posts. The Aspie Side of Life did a wonderful post, Acceptance is Acceptance.

In the end, there are many voices in the autism communities. I am more comfortable ensuring that an Awareness Day is devoted to making sure that voices not often heard get more attention than someone selling blue lights. Light, like autism, is a spectrum and blue describes only one portion of it. Bleach, of course, is designed to remove all the other colours.

Posted by gingerheaddad with WordPress for BlackBerry. I kinda like posting with my Blackberry.

Birthdays no longer celebrated

So far in 2012 a couple of friends have laid one of their parents to rest. One lost a mother and one lost a father. Last year, a couple of high school friends lost their mothers.

Having already said my final goodbyes to both of parents in the last half dozen years, I can appreciate and understand the road ahead for them holds many unexpected milestones where grief and sadness take hold.

One of those milestones for me is my father’s birthday, which is today. It always feels odd to me to hear that we are celebrating someone’s birthday after they are dead or to say that they would have been x years olds today. I don’t have an easy way of reconciling the fact that it feels strange to say birthday for a deceased person and yet to remember it every year.

I have discovered that it is far easier to remember the date of my father’s birthday than it is to remember the day he passed away.

That could be due in part to the rush of emotions in witnessing his final days. It could be that we had twins at home who were less than a year old and it was one of many things emotional things going on.

I prefer to think that it is about acknowledging the day when all of his promise was ahead of him, rather than his last day when his promises had all been fulfilled.

Mike and the Mechanics did a beautiful song in the 80’s about the loss of a father, called “The Living Years.” Toward the end of the song is a stanza that even then made me a little teary-eyed.

I think I caught his spirit

Later that same year

I’m sure I heard his echo

In my baby’s new born tears

(Written by Mike Rutherford, Brian Alexander Robinson, Lyrics Copyrighted by EMI Music Publishing, BUG Music)

This may sound maudlin, but I see my father in my son. In his face and in his countenance, I see my dad.

As a kid, despite the physical and emotional distance between my father and me, I believed my dad could do anything and solve any problem. He could build anything. I did a science fair project on nuclear fusion reactors and I had a vision of what I wanted to do. I needed a model of a tokamak reactor. I gave my dad some pictures of what one looked like and some sketches of what I wanted. He also offered to build my display.

When he was done, I just about cried. I didn’t cry because that just wasn’t done in front of my father, but the memory still brings a tear to my eye.

The reactor model wasn’t just perfect; it was breathtaking. The display was amazing. What started out as masonite pegboard became a stark and impressive backdrop for the posters and pictures. My father my never had said “I love you,” but that day I had no more doubts that he did.

That project earned me a job in a lab which was my first job not as a paper boy or working in a factory. My father’s wishes for me were fulfilled with that model.

Dad, having grown up a farmer, been a soldier and spent years on the road, was very frugal with his words. Having a son who needs intensive work to develop his speech makes the two seem all the more similar to me. Both voices offer so much when I am patient to hear.

I see so much more than a physical likeness between my son and father. I see the intellect that is often hidden. I see amazing and creative problem solving skills. I see a love that comes through actions not words.

I admire them both for the struggles that they are presented with and the dignity that they demonstrate in meeting them.

They are also very human and sometimes fall back, but they work so hard to try again.

My father and my son are such remarkable role models for me, even on the days when I miss them most.