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Autism Awareness: When The Puzzle Pieces Don’t Fit

March 7, 2013 By

In many countries around the world, April is designated as Autism Awareness Month. In the lead-up to it, I am starting to see more postings on Facebook offering autism awareness merchandise, providing little factual snippets about autism, and inviting people to “Light it up Blue”.

I am also seeing ranty posts about how awareness is NOT ENOUGH, action is NEEDED, and the Light it up Blue campaign is nothing more than a ploy to line the pockets of people working for Autism Speaks, who let’s face it, do not provide financial assistance to affected families.

Sigh. Here we go again.

I don’t have feelings one way or the other about Light it up Blue or Autism Speaks. I don’t care that they don’t give money to families, because they are an organization that funds research. I have a feeling that some of the people so vehemently opposed to them care less about whose pockets are being lined and more about the fact that Autism Speaks is not a proponent of the controversial vaccines-cause-autism theory.

Which is fine. I don’t expect people to support organizations with philosophies that differ from their own. I believe that the prime driver of autism is genetics – I wouldn’t throw my voice behind an organization that actively tries to prove otherwise.

I also wouldn’t say derogatory things about people who don’t share my views. I wouldn’t put up postings implying that those who don’t agree with me are stupid or uninformed. I wouldn’t make use of insulting terms like “sheeple”.

I would live and let live.

People tend to have reasons for their beliefs. I know for a fact that vaccines had squat to do with my son’s autism, and both of my children are up to date on all of their shots. But I would not presume to tell people that just because my kid came out of the womb with autism, theirs must have as well, and if they don’t agree with me – then, you know, they are “sheeple”.

I tend to use the phrase “autism community” a lot, as if we were all just one big happy family that just wants the rest of the world to accept our kids. At times, though, I question whether there is an autism community. Sometimes – particularly during Autism Awareness Month – it feels as if there are many different sects that are all divided. Each sect has members who are more than happy to leave others to their different beliefs, and each sect has those who are almost militant in their attempts to get other people to think the same way they do.

I am of the opinion that Autism Awareness Month should not be used to push agendas about what may or may not cause autism. I think it should focus more on the fact that our kids have autism, whatever the cause was, and they are individuals who have a lot to offer society. It should be about trying to make the world a better place for our kids – a place where they can grow and flourish and reach their full potential, whatever that might be.

How can autism parents hope to make the world accept their kids when we cannot even get along among ourselves? What kind of example are we setting for the society that we’re hoping will treat our kids with the respect they deserve?

If you want to Light it up Blue or promote awareness in any other visible way, go ahead. Whether you support Autism Speaks or any other organization, give them whatever support you feel comfortable with. Tell people about your views if you like, but graciously accept that they might think differently.

Autism parents, we’re all in this together. All of our kids have autism. Let’s be nice to each other for their sake.

(Photo credit: Ashtyn Renee . This picture has a creative commons attribution license.)
Filed Under: Autism Awareness, Causes of Autism, Community, Getting Along, Respect Tagged With: , , , , , ,
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Sticks And Stones And Words That Hurt

May 31, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Special needs parents come with all kinds of super-powers, one of them being the ability to grow a thick skin. This is a necessary part of survival: without it, we would not be able to withstand the stares from strangers during public meltdowns, the judgmental comments that are designed to make us feel like bad parents, and the mothers who steer their children away from our kids in the park, as if autism were contagious.

These things never really stop hurting. They never fail to make our hearts ache for our beautiful children who through no fault of their own, are targets of ostracism and discrimination. As we grow into our roles as special needs parents, though, we learn coping skills. We come up with ways to shield our children from the hurt, and to let the strangers know that our kids have a place in this world, differences and all.

We learn how to accept that the blatant looks and rude comments are not a reflection on us as parents. They are a reflection of the ignorance and prejudice in other people.

But.

No matter where we are in our special needs parenting journey, nothing can prepare us for the first time someone maliciously refers to our children as “retarded”.

Although this word was originally used in a medical sense, it is now generally regarded as a derogatory term, especially when the intent is clearly to hurt either the child or the parents. As conventional wisdom states, “It’s not what you say, it’s how you say it.”

Today marks the fifth anniversary of my son George’s autism diagnosis. I guess it is a cause for celebration: not only have we survived for this long, we have seen great strides along the way.

It is also the first – and hopefully only – day on which someone referred to George as our “retarded son”. It happened in the early hours of the morning during a telephone argument between my husband and someone else. There is no doubt that the words were spoken with malicious intent.

George was asleep, so he was spared the pain of hearing himself referred to in this way. The hurt behind the words had to go somewhere, though, and it slammed into me, almost leaving me breathless, and then settled over my shoulders like a heavy cloak.

Several hours later, I am left with a knot in the pit of my stomach that won’t go away, and unshed tears that I am trying with all my might to contain.

As I try to prepare my son for life in the big wide world, I worry about what the big wide world is going to throw at him. Will it be a place of opportunity for him, or will it be a minefield of insults and discrimination?

Do I try to shield him from the hurt, or do I let some of it get through to him so he can learn how to protect himself?

How do I ensure that my son will be OK, that he will be happy and feel safe, in the days when I am no longer here?

Filed Under: 2012 Wordcount Blogathon, autism, Bullying, Discrimination, life, parenting, Respect, Special Needs, stereotyping Tagged With: , , , , , , , ,
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A Place To Stand

April 2, 2012 By

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 2 – Quotation Inspiration: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

move the world2

Give me a place to stand and I can move the world. ~ Archimedes ~

While I was labouring with my first child, I channelled some of my pain by yelling out swear words about Ontario’s new premier, who had been appointed after the resignation of his predecessor. I did not have much interest in Canadian politics at the time: I had only been in the country for three years and I did not have the right to vote. Adjusting to living in a new country and being pregnant had pretty much taken up all of my energy.

I didn’t know anything about this man I was yelling obscenities about, except that he had this irritating whiny voice that made me wish my head would just explode.

At some later point, after Mr. Whiny Voice had been ousted from office, I asked someone how Toronto’s problem with homelessness had originated. The answer horrified me. Apparently, the former Ontario government – the one led by Whiny Voice’s predecessor – had cut funding to a lot of services, mental health care being one of them. As a result, patients with mental illness suddenly found themselves being ousted from programs that they could not afford to pay for themselves, and in the absence of homes or job prospects, they had ended up on the streets.

When I heard about this, I just wanted to cry for these people. I mean, is that any way to treat a human being? Stop their treatment and put them out in the street?

As an autism parent, I know all about the difficulties with funding. Governments do not have unlimited money, and increasing – or in some cases, merely maintaining services comes with raised taxes, and that never goes down well with the public.

I could offer up a thousand suggestions as to what could be cut instead of services that allow people to have basic dignity and quality of life, but this post is already in danger of being more political than I’m generally comfortable with.

Instead, I will say this: that every single person has a place in this world. No matter what challenges they face, no matter what their strengths and weaknesses are, and no matter what level of functioning they ultimately achieve, they are all rightful members of the communities in which they live, and they should be respected as such.

I often tell the story about the day we received George’s autism diagnosis. In the midst of the devastation that goes with this kind of thing, the doctor started talking about his prognosis for George’s future. He didn’t hold out much hope, and we left his office that day thinking that as an adult, George wouldn’t be able to do much more than sweep floors.

The reality has turned out to be very different, and although George is an eight-year-old with some profound challenges, he is also an eight-year-old with a great deal of intelligence and a ton of potential.

But that is not the point. The point is this: so what if George grows up to sweep floors or clean toilets? Can you imagine what the subway station or the airport or the shopping mall would be like if there was no-one to sweep the floors or clean the toilets?

Whether my son sweeps floors, becomes a computer programmer, works in a library, or wins the Nobel Peace Prize for revolutionizing heart transplant surgery, he has a place in the world.

It is my job to help him reach his full potential, whatever that may turn out to be.

It is up to me to help him find a place to stand so that he can move his world.

He already totally rocks mine.

(Photo credit: http://www.flickr.com/photos/sporst/6914330609/sizes/m/in/photostream/. This picture has a creative commons attribution license.)

Filed Under: autism, Government Funding, Health Activist Writers Month Challenge, Mental Health, parenting, Respect, Society Tagged With: , , , , ,
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Remembrance

November 11, 2011 By

Today we honour the men and women who were willing to lay down their lives to save the world.

We thank the veterans who returned from war.

We remember the soldiers who never got to come home.

Please visit World Moms Blog to see my post marking Remembrance Day.

And let us never forget.

Filed Under: Giving Thanks, November 11, remembrance, Respect, Sacrifice, Veterans Tagged With: , , , ,
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Emergence Of A Rainbow Generation

November 3, 2011 By

On a hot day in February 1990, I stood still, waiting for history to happen. It was the middle of a South African summer; I had just started my final year at the University of Cape Town, and it seemed as if the entire student body – no, make that the entire population of the Western Cape – had turned out. I was going through a lot of difficulty in my life at that time, but wild horses couldn’t have kept me away from this.

Finally, it happened: the event everyone had been waiting for. A well-known and much-loved figure appeared and waved at the crowd, which was going nuts with excitement. Tears of emotion flowed all around me and within me as this great man stood before us. It was official. Nelson Mandela, the icon of freedom in South Africa, was a free man.

During my childhood years in South Africa, I was a little afraid of black people. This is hardly surprising when you consider the draconian laws that were in effect at the time. Black people and white people were completely segregated. They were required by law to live in different neighbourhoods, they could not attend the same schools or churches, and they could not use the same public facilities. In many cases, they could not even enter stores through the same doors. When I was a child, my exposure to black people was limited to the gardener and the cleaning lady.

My parents, and the parents of my peers, did their best. They themselves had been raised to distrust people different from themselves. Fortunately for me and my contemporaries, common sense and basic human dignity had prevailed, so the generation above me had gone against their own upbringings and taught us to treat everyone with respect, no matter what colour their skin was.

And yet, it has to be remembered that our parents were trying to raise non-discriminatory kids in a society that legally mandated racism.  We couldn’t have playdates with black people. If you looked at the student body during school assemblies, you would have seen a sea of white faces. We never shared grocery store line-ups with black people; we didn’t even pass them on the street.

How could a generation of kids learn how to interact in a positive way with a group of people they were never exposed to? It is no wonder that despite the eventual dismantling of the Apartheid regime, race relations in South Africa remain troubled. People are still learning how to get along after generations of having been told that they were not allowed to.

My two kids are having a childhood that contrasts sharply with my own. They have never known an existence of discrimination. They interact freely with kids from all backgrounds, regardless of ethnic origin. To them, people are just people. A telling example of this happened almost two years ago, when my younger son’s Kindergarten teacher unexpectedly died and a new teacher was brought in. When I asked my son what the new teacher looked like, he said she was absolutely beautiful. She had long black hair, and a big smile, and big brown eyes. It is perhaps a damning indictment to my own upbringing that I was surprised, when I finally met the teacher, to see that she was black. My son had not once mentioned this in his lengthy description of her. He had not even noticed her skin colour.

My kids are growing up in a world that sadly still experiences some racism. But so far, they themselves have not shown any signs of discrimination. If that ever happens, it will be nipped in the bud immediately. My dream is for my kids to grow up respecting everyone, no matter who they are or where they come from.

As Scout says in Harper Lee’s To Kill A Mockingbird, “There’s only one kind of folks. Folks.”

Filed Under: Apartheid, Childhood, parenting, Race relations, Respect, South Africa Tagged With: , , , , , , ,
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Life And Death: No Laughing Matter

July 23, 2011 By

People are already making jokes about it.

The first news stories about the untimely death of 27-year-old musician Amy Winehouse started circulating less than an hour before I started writing this post. Within about ten minutes of me first hearing the news, fan pages started to pop up on Facebook.

Amy Winehouse is dead, at least theres enough drugs about for everyone now (with a smiley face emoticon at the end)

Police say that winehouse’s death was unexplained LOL, at that point they were probably stoned on the drugs in her <profanity>

Screw Amy Winehouse, she was a druggy and had death lined up for her

Amy Winehouse is dead…..HAHAHAHAHAHAHAHAHAH

Now, I don’t know much about Amy Winehouse. I don’t exactly fall into the demographic that stays up-to-date on popular music. However, I do know that she was insanely talented, even though her music wasn’t really to my taste. I know that she was plagued by substance abuse problems. I know that she was young and had a lot of life ahead of her, and that she had tons of potential within her.

I know that her death is unspeakably sad.

These jokes that are circulating, these fan pages that are being set up, and the derision with which some people are treating this story, is a sad statement about how people have become so desensitized to tragedy that they can have a good laugh about it before the deceased has even started to cool down.

Or maybe it’s nothing new. This is not the first time I’ve heard jokes about a tragedy soon after its occurrence: the space shuttle Challenger disaster, and the death of Mozambican president Samora Machel in a plane crash, both of which happened in 1986, are cases in point.

I wonder why this is, why there are people can make light of events like this. One theory is that they just don’t know how else to deal with news of tragedy. There is some credence to this idea, and I saw it in action on the day my father-in-law died. There was a mix-up that resulted in the wrong funeral home attempting to collect his body from the hospital, and when my mother-in-law heard about this, she made a joke about the funeral homes fighting over her husband’s dead body, and she laughed heartily. I believe that allowing a chink of humour into the day was a way for her to cope with the initial shock of being widowed after almost fifty years of marriage.

In the case of more widespread disasters, I believe that sometimes people make jokes simply because they don’t know how else to process the information.9/11. Hurricane Katrina. The tsunamis in Thailand and Japan. The Haiti earthquake.

Sometimes, though, people are just plain insensitive. They don’t feel any empathy either for the deceased or for the newly bereaved loved ones. Or  – and Amy Winehouse’s death is an example of this – they somehow rationalize that because the person lived in a certain way that they do not agree with, it is OK that he or she died.

Here’s my thought on all of this: Yes, Amy Winehouse was a celebrity – a colourful one with a controversial life, at that – and therefore her life was, to an extent, public property. And yes, she seems to have died in an Elvis-like manner that is bound to attract a lot of attention and speculation.

But above all, she was a human being with hopes and dreams and feelings and loved ones. The fact that she had substance abuse problems does not mean she deserved to die. It does not mean it is OK that she died. Her life – and her death – deserve the same respect as anyone else’s. Her family and friends should be able to grieve for their lost loved one without the world making public fun of it all.

I hope against hope that we as a society can somehow regain some of the humanity and compassion that seems to have eroded.

(Photo credit: http://www.flickr.com/photos/ups/2066092204/)

Filed Under: Amy Winehouse, Celebrities, Death, Facebook Fan Pages, Jokes, life, Respect, Tragedy Tagged With: , , , , , , , , , , , ,