They cut deep into his brain.
Deep.
They implanted some kind of electrodes.
Deep, down inside.
He said he was excited.
He said he was frightened.
The story aired on a local television station here in Toronto a couple days ago. A young boy, a grade 8 student, had a rare condition wherein his body was overtaken by constant shaking. He dreamed of being able to fill a glass of water. He dreamed of being able to eat on his own. The operation held out the promise that these dreams would come true.
A reporter interviews him and shows film clips of him before the surgery. As the interview continues it unfolds that the young boy, grade 8 and anticipating grade 9, was being teasedwithout mercy, without ceasing at school. He dreaded walking the hallways. He was terrified each day on waking. His mother, who loved him, who's voice conveyed such affection, spoke of her heartbreak as he began staying home, not wanting to go out. The stares of others, the glances that cut, the comments that pierced, well, he just couldn't bear them anymore.
He began riding in the car only with the windows up.
So people couldn't see him.
He lived in fear of students.
He lived in fear of shoppers at the mall.
He lived in fear of other drivers, other passengers.
He lived in fear of people.
Grade 9 and the transition to a high school filled him with dread. He knew it would get worse. He faced his future with fear.
And.
Then there was the possibility of surgery.
He wanted to pour himself a glass of water.
He wanted to independently feed himself.
He had surgery. It was successful. The reporter, playing for the tears of viewers, has him pour himself some water, feed himself some food. He talks about being at the new school and that the teasing had abated. He talked about no longer fearing going to the mall. Mother is relieved. He is happy.
And the reporter ... indeed all the media asked all the wrong questions.
They asked him what it was like to be able to pour himself water.
They asked him what it was like to be able to feed himself lunch.
They asked him what it was like going to the mall.
The wrong questions.
Asked of the wrong person.
Why didn't they ask how it could be that we live in a society that a boy lives in fear of going to school, knowing the bullying he faces because of his disability?
Why didn't they ask how it could be that the we have come to believe that we have to implant electrodes deep into the brain of a young boy in order for him to gain even the slightest bit of social approval.
Why didn't they ask how it could be that the responsibility for the bullying was transferred to a boy that shakes rather than a system that tolerates hatred and acts of hatred?
Why didn't they ask what would have happened if the surgery hadn't worked? If he couldn't pour water but still had to endure the unendurable walk down a hostile hallways.
Why didn't they ask people to think about the thousands and thousands of kids with disabilities, kids with differences who RIGHT NOW are fearing the morning, fearing the bus ride to school, fearing their fellows?
Why?
Because he could pour himself water.
And that makes a good picture.
Why?
Because, in some small way, they, and all like them, really don't, down deep disapprove of kids born with a target on their back being shot at.
Sometimes I wish reporters would be more curious about what's really going on. In BC we have just had the report about the missing women.....they talk about poverty and addiction but not about the impact of trauma, ie sexual abuse that also deeply affected these women.
ReplyDeleteWe need reporters who are willing to go beyond the 'its a miracle....now he's normal 'but they've just broadcasted his story which I worry makes him a target even tho he's 'cured'.
Oh Dave,
ReplyDeleteexactly the questions I have been asking myself while reading your post.
I pitty our society and I pity myself for living in it. But I try and try not to have targets like this.
Julia
And tell me, who would have bothered hearing the true answer to those questions. It ist something that makes "normal" people feel uncomfortable.
All these type of 'cure' stories bother me because they add to the bullying problem instead of addressing it. A few years ago there was a big story about parents opting for cosmetic surgery for their kids with Down Syndrome,so theyd look 'less Downs' and therefore be more accepted by their peers/society. Its a shame we cant put electrodes in the brains of the people who make parents and kids consider operations simply to be safer from others prejudice and ignorance. Its fantastic that this little boy can pour water and feed himself now,but 'he' wasnt any less fantastic when he couldnt.
ReplyDeleteThis isnt how it has to be though.There are kids with all sorts of disabilities who are just 'mates' or siblings to other kids around them because humans 'do' have the ability to unbotheredly accept difference. Its a choice to exclude and belittle not something people cant help doing.
Dear Dave:
ReplyDeleteThis is very thought provoking - thanks.
A couple of things that went through my head:
I think at some level many of us operate like this - Someone has to be born with a target on their back, thank goodness it's not me. I don't think that people are usually consciously aware of it, but I think it is there.
"Normalism" - the belief that everyone with a disability wants to be "normal" like the rest of us - this is a huge prejudice in our society. Again I believe people are not usually consciously aware of this assumption but it is there.
I agree with you that it is the bullies who need to be fixed not the kid with a disability. But how do we get there? Bullying is so much a part of how power is weilded at all levels anymore, I am at a loss.
Colleen
I keep seeing these ads of children in developing countries with cleft palate soliciting donations so that doctors can give them a "smile". (In most developed countries, insurance covers this. But in developing countries, even "simple" surgery like that for cleft palate or club foot often is financially out of reach for the poor.) Some of these ads stop there, just with the idea of "fixing" their smile. But in years past I've seen other ads that also go on to talk about normal lives, the ability to go to school after surgery. And I think, Ok, it's not always "wrong" to do surgery to "fix" an impairment if that's what the child (and family) wants. But if society did better at accepting differences and making accommodations/adaptations for them, then they wouldn't have to wait until surgery in order to simply go to school and have friends and avoid being teased or stigmatized.
ReplyDeleteAnd we NEED to address this issue because no matter how far medicine advances, we will ALWAYS have people with disabilities (and with different appearances) among us. And not all will be so easily "fixed".
I agree, too often the wrong questions are asked and the wrong solution offered with no consideration of what happens if that solution doesn't work.
Very thought provoking post - a little too thought provoking me at 6 AM after being up quite a bit all night from nasty dreams.
ReplyDeleteIt is sad, and interesting, that the boy was asked what it was like to pour a glass of water. I'm sure the reporter knows after all!
I don't think there is anything wrong with getting surgery to "fix" something if needed. Although, I also think it depends on the motives. Is to fit in better? To feel better? Is it medically necessary? These are questions that can only be answered individually.
I enjoyed your blog and am your newest follower!
Welcome Jess, I agree with you, and wanted to make clear, but it didn't fit in with the post. That him having surgery is his choice and only his choice - he said that it was so that he would be able to do things he couldn't before. The teasing issue was raised when they talked about his life 'before' ... in the 'life before' they never mentioned anything about ability to eat or drink.
ReplyDeleteBut if the reporter actually thought for a minute and thought about the teasing as a problem, then there wouldn't be an ~inspiring~ story of "overcoming obstacles". The news would actually have to think of disabled people as real people. Very powerful post.
ReplyDelete(I hate to do this here, but I was wondering if you ever got my email from sasha.smithy at yahoo?)
gimptude, I just did a search of my emails and didn't find anything. Please try again, I'll watch for it.
ReplyDeleteDo you have a link for this story? Well said Dave!
ReplyDeleteouch!
ReplyDeleteThis is so true.
I started looking for resources for a school to use with a guy who has been bullying- as in he does stuff that bullies others.
I couldn’t find any resources, I looked on the antibullying sites and school resources sites and special needs sites (this is in the uk). There was lots about what to do if you are bullied.
I found one resource for adults with autism and aspergers syndrome. the authors say: 'We are very clear that having ASD does not make somebody a bully, but that some of the characteristics of ASD might make people with ASD vulnerable to bullying others or being seen as bullies by others. We explore these characteristics and offer explanations of how behaviour could be interpreted by others.’
How come the only resource I can find that deals with bullies, deals with bullies who also have diagnoses and focuses on characteristics associated with the diagnoses?
It seems there’s an acceptance of bullying as an inevitable phenonemum like leaves falling in autumn or cold in winter.
I’m not idealistic enough to think that we can stamp out bullying entirely, but, please, I want to see some resistance to the idea that bullying is inevitable, that bullies are beyond intervention, that we just have to live with it.
It’s not like we know nothing about why bullies bully. We’re all told that bullies do what they do because they are troubled. If that’s the case, then let’s all deal with that, not use it to tell the bullied that actually they are priveleged and have to ‘rise above it’ and stuff like that.
Oooh it’s distressing.
It's nice that he can pour water and feed himself, But I hope that he also can learn to make art, or dance, or invent something wonderful, or do anything at all that he wants to.
ReplyDeleteWhile the bullies wil always be bullies.
Sharon
I showed a video last semester when talking about Parkinson's disease and neurotransmitters which is a 60 Minutes segment in which we see a man before and after DBS implantation, and I had precisely the same reaction to that coverage as you do to this story.
ReplyDeleteIt struck me that his greatest pain (at least that the segment focused on) was *emotional*. He could barely move at times, but it was other people's reactions to his dyskinesia caused by the drugs he took that seemed to be the greatest barrier towards him leaving the house.
And the recovery was remarkable: with the combination of DBS and lower doses of medication, he was able to play pool again, etc., but he was especially happy about being able to leave the house with confidence.
I wish they would interview one of the bullies - make him or her look into the camera and say what's so funny...........
ReplyDelete