How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Tuesday, February 22, 2011

The Oprah Issue: Her Mistake, and Ours

You may - or may not - have heard that Oprah recently dedicated an entire episode to the story of a "7 Year Old Boy Who Tried to Kill His Mother". Yes that's the actual title. The boy's name is Zach.

In the clips advertising the show they mentioned "Sensory Integration Disorder" - the old term for SPD, so I set my tv recorder to record the episode. I was really surprised by two things: first, that a child with SPD was trying to kill their parent, and secondly, that they were featuring SPD on Oprah - since there has been a campaign to make this happen for some time now, and I was sure we would have heard something from the professional organizations or SPD groups if they were aware of it.

Well, the first problem is that - they weren't aware of it. At least it doesn't appear, at this point, that Oprah's producers made any attempt to contact or feature any of the prominent SPD experts. The second problem, is that the version that aired - all across the world - appears to have been edited in such a way that there is a total absence of quality, accurate information on SPD (or any other of the disorders affecting this child) and in a way that specifically leads viewers to believe SPD is a mental illness, and to associate SPD with violent, potentially murderous behaviours. Clearly this is not an accurate depiction of the behaviours associated with SPD.

It IS an accurate depiction of behaviours associated with serious mental illnesses, such as bipolar or schitzophrenia. Later in the show (much later) Oprah mentioned - almost in passing - that Zach has been diagnosed with various mental illnesses, none of them named on air, but bipolar is named in the online Oprah article.

There has been a flurry of discussion in the SPD online community about this episode of Oprah. Lots of good discussion. But there has also been... a tone. A distinct tone in many of the comments I've read on Facebook pages and blogs, that is making me uneasy. It's a tone I completely understand and recognize as second nature for many - but it is a tone that I think we need to explore and challenge in our role as advocates for children.

It's this tone: "MY child isn't like THAT child"... "MY child doesn't have a MENTAL ILLNESS".

For those of us who's kids have labels, but not one that falls into the category of mental illness, we fear the stigma of mental illness, because it casts such a dark shadow. Much darker, we likely feel, than the ones our kids' labels carry. They don't make movies about OUR kids killing people in psychotic rampages. They don't lock OUR kids up for unspeakable crimes. While we may never say it, the implication here is that our kids are better than that.

In the neurodiversity community, there has been much talk about the need to eliminate the sense of an autistic hierarchy - where those who are non-verbal and score low on IQ tests, are viewed automatically as less than those who are verbal and have average or above average IQ scores. In your own life - have you not felt the inherent awareness that others are viewing your child as less than his or her peers, when your child's behaviour is so different and misunderstood? Many of us have had our SPD kids accused of aggresive or violent behaviours when they hug someone too tightly, tackle another child, or grab someone's neck - not recognizing how much force they are using because their neurons are not sending the right signals to their brain.

I think there is a temptation for us to distance ourselves - and our kids - from the dreaded world of mental illness, because we are tired of our kids being the less thans, and without really recognizing it, we are elevating them above another group of less thans. Similarly, it irks many of us (me included) that Autism (and possibly SPD in the future) have to be placed into a diagnostic manual for "mental disorders" given that neither really ARE mental disorders. But if we are honest with ourselves, we're not irked because it's inaccurate so much as we are a bit ashamed to share a book with the crazy people.

But we shouldn't delude ourselves: ignorance is ignorance. Prejudice is prejudice. Someone who stigmatizes a child with a mental illness out of ignorance about their condition, is just as likely to stigmatize your child out of ignorance about theirs. Prejudice does not discriminate between disorders, it merely discriminates against them all.

Distancing ourselves from the stigma of one disorder (mental illness) does NOTHING to address the pervasion of stigma in the first place - and ALL of our kids are suffering from that pervasion of stigma. It touches everyone who is perceived as "different", and who's behaviours and conditions are misunderstood due to a lack of compassion and awareness.

Which takes me back to Oprah. I view this regrettable episode as one giant missed opportunity. An opportunity to spread awareness about so much more than one beautiful little boy who grabbed a knife in his mother's kitchen - so much more than a sensational headline. This was a missed opportunity to share accurate information. To encourage awareness and compassion for kids who bear the burden of heavy labels, whether it's SPD, Autism, Bipolar, Schitzophrenia, or any other widely misunderstood diagnosis.

The bottom line is that we're all in this together, regardless of the label we wear. If the goal is to destroy the menace of stigma, then we will only be successful when all of our children shed the weight of it. And we will only get there by resisting the temptation to finally be a better than.

12 comments:

  1. You are so right! I posted on FB about SPD not being a mental illness, partly because I fear that many kids may not be diagnosed properly, because now their parents think SPD is a violent mental illness, which it is not.

    I was so disappointed that they missed the chance to really highlight this disorder and explain what it is and who it affects. It would have been so great to have some experts on, etc.

    But you are also right about the stigmatization. I am guilty of it myself. When Danny was first diagnosed with autism, I was always very quick to point out that he was high functioning, partly because I didn't want people to prejudge him, but also because deep down, I am uncomfortable with the whole thing. Uncomfortable with the fact that my kid is different than other kids. I'm working on it, I really am, but it's definitely taking some time. Thanks for the reminder to watch my attitude!

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  2. Caitlin, this is an amazing post. Very important points. Thank you for being brave enough, and caring enough, to speak out. =)

    Chynna
    www.lilywolfwords.ca
    www.the-gift-blog.com
    www.seethewhiteelephants.com

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  3. Fabulous post! Thank you for being so thoughtful and coherent.

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  4. i JUST WROTE AN ARTICLE ABOUT THE STIGMA & STEROTYPICAL VIEWS OF MENTAL ILLNESSES ! hONSETLY WHO ON EARTH WOULD WANT TO FIND OUT OR ADMIT THEY HAVE A MENTAL ILLNESS WITH THE IGNORANCE THAT IS STILL SO WIDE SPREAD OUT THERE !
    oops sorry about those caps ☺
    I mean really if I'm mentally ill in some way would it not be in my best interest to know ! If I have cancer I sure would like to know so would my family & friends I'm sure .
    Why dop we only hear of stories of the violent side of mental illness in some people . many people with bipolar and other illnesses do not have any violent behaviours ever !
    I was thinking too how we do not hide from people with cancer ( well I guess some who are afraid of the topic of death might ) but and we also accept all aspects of cancer . There are many types of cancer ,treatable , curable etc.
    so now Op[rah has done nothing but hype up unnecessary fear in people instead of educate . It reminds me of fear of certain types of dogs . In the 70's it was the german shepard v80's the doberman , the rotwiller , the pitbull etc... on and on we go .
    feeding peoples ignorance & fear isn't it sad that is how people become popular and wealthy !
    this was a really good article ! Thanks

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  5. I can't thank you enough for sharing this post. I have linked you from my FB account because I couldn't have summed it up any better.

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  6. Caitlin,

    Great post (as always)! I think you are right about people wanting to make sure that their children are viewed as 'less severe' as 'those' kids. And trust me, I have the same challenge in my house when I say that I have two sons with Autism.

    Becuase one of them has a MUCH MORE complex set of challenges, Autism being one, and the other *just* has Aspergers. Those lines in the proverbial sand are hard - yet we cling to them.

    Or at least I do.

    Thanks for shedding light on another part of this crazy Oprah mess!

    Hartley

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  7. This was beautifully written. My concern with Oprah was that not all of the information was out there. While I do distinguish my son from Zach, I also distinguish him from other children with SPD. He has more than SPD and I accept that. Oprah needed to do her homework and share more information so that the general public has an overall better understanding. Thank you for sharing your thoughts. It helped me think outside the box I was putting myself into.

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  8. Well said. Thanks for writing this.

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  9. Excellent post! Though, I would like to point out that society's perception of the mentally ill is inaccurate. The notion that OUR kids are not like that; well, the majority of people with mental illness (about 26% of the adult population of the United States) are not like that. But a person with a mental illness that goes about daily life doing normal things--that's not worthy of news headlines or movies.

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  10. Well, I guess this helps explain why I never watch Oprah!

    My private thoughts about the Oprah show aside, though, this is such a well written and thoughtful post, Caitlin. I'm grappling with the words for how it impacted me. Perhaps your words "prejudice is prejudice" and the following few sentences are what finally caught me, and helped me understand the sharp point you were making. As the mother of a child who would likely be considered neuro tpyical but with definite quirks, it is so easy to look at other children/families and try to place myself (and them) on some kind of hierarchy of 'okness.' But it's no more ok for me to do that than for Oprah!

    Thanks Caitlin. ALways good food for thought.

    Ruth

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  11. I'm not an Oprah fan, but if I had known about this episode I would have watched it. And obviously I would have been sadly disappointed. I admit to "distinguishing" my daughter as "clearly high functioning" but not because I want to say that she is "better than" other autistic or SPD kids. My clarification comes from having so many people doubt that there could be anything "wrong" with my daughter, even insinuating that I'm looking for problems. I worry that because she is so high functioning, we won't be accepted into the ASD community. We need some support and because so many others don't see the differences, namely the way she is at home, we get no support, only criticism.

    I would love to see more information being put out there by talk show hosts, reporters, etc. (as long as it is accurate), because so many people are still in the dark about these disorders.

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  12. Beautifully said, and you're so right.

    I lay awake obsessing that other people will view misunderstand Bear and see him as inferior because of his differences. I was really bothered by misinformation on this Oprah show because we're already seen with the Jenny McCarthy mess that people believe medical misinformation they see on Oprah.

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