Friday, May 4, 2012

Mr. Ben?












Last week when Ben walked into the Kumon waiting room with a volunteer she was all smiles.

“Flawless!” she exlaimed, holding up a book of sums adding 4 that Ben had just finished.

Ben and I grinned and I could imagine his chest filling with pride.

Every child needs to feel successful and I’m grateful that Ben is having this opportunity – even if it’s totally out of whack with the typical learning trajectory of kids.

At the same time, I remind myself that less than a year ago Ben couldn’t even write – much less sit focused and add numbers.

I’m doing a presentation for some medical and research students and I keep coming back to how my conceptions of disability (intellectual and physical) before having my son were wrong. WRONG. WRONG. WRONG. So far off the mark.

And how conventional ways of measuring success can never come close to capturing the complexity, richness and essence of a human being.

Right now Ben is enamored with the Mr. Men series of 49 children’s books. You know – Mr. Greedy, Mr. Brave, Mr. Daydream, Mr. Dizzy, Mr. Bump.

I remember these books as a child. Apparently they were created by British author/illustrator Roger Hargreaves after his son Adam asked: “What does a tickle look like?”

Ben doesn’t want me to read these books with him. He wants to enjoy them himself. There's something about the characters and how their names match their appearance and personalities that Ben finds humorous. Being so petite himself, perhaps he's also drawn to the little square format of the books and the little characters. Who knows, maybe he sees himself as Mr. Ben.

Back to my presentation. We don’t need to make disabled kids ‘normal.’ We need to open people’s minds to see youth with disabilities as full human beings with their own rich worlds.

15 comments:

Thank you, Louise! The last few sentences you wrote here sum up my beliefs about my daughters perfectly! A beautiful sentiment and definitely something we all need to keep in mind.
Also, how wonderful that Ben has discovered something new that brings him joy! My daughter enjoys those books as well

Louise,

We may not need to normalize kids with disabilities, but for those who are able, we must help them acquire the means to become productive members of society.

For, here on BLOOM, you also wrote:

"...21,000 adults aged 21 to 36 in Ontario receiving Ontario Disability Support Program funding who are in effect "sitting at home with Mom and Dad, watching television." They said that another 50,000 young adults with disabilities would come into the ODSP program in the next five to seven years. That's a lot of young adults sitting at home with Mom and Dad."

The imbalance is not only far too great, it is "unjust."

Matt Kamaratakis

Hi Matt -- Thanks for your message. I have a problem with the word 'productive.'

I think people should be able to do something that brings them meaning -- which will be different for different people.

Most people read the word productive as meaning 'making money.'

I would like to see adults with disabilities having rich lives that in many cases will involve employment and careers, and in other cases will involve other interests and ways of contributing.

Hi Louise,

While writing the comment above, I grappled with the differences between "meaningful" and "productive", as I have experienced both in my life. For instance, BLOOM has given my life meaning, but I am not yet productive. I love the fact that thousands of readers will ponder our conversations, deciding for themselves, how to help their kids. However, without becoming prodoctive, I will never have children of my own.

Moreover, you recently posted about a couple with CP who chose to have a baby. Now, I do not take issue with the fact that both are disabled, but it does bother me that they are on social assistance. Please believe me when I tell you, "This is becoming the new norm."

I also tried to reach a compromise, for those like Ben and my brother, as I specifically wrote, "...for those who are able..." Subsequently, I too, cannot ignore my disability, as strive to be more like you, "Meaningful and productive."

Matt Kamaratakis

“Flawless!” Way t o go Ben that's fabulous! I love those books as a child my dad used to travel on business and always bring one home to me. However I never held on to them too bad perhaps Ashley would enjoy them too.

Louise this is great! I know Ben can sometimes feel overwhelmed with work, so when he is "flawless" you know he is feeling good! He kinda is Mr.Ben, I call him that sometimes, not even thinking about the books. His favourite nickname I call him is Ben-Jam-Min, which is his name, but he likes the way I say it. Ben like me and many others I know is leading a very meaningful life, I mean, he gives a lot of happiness and meaning to my life!

Hi Matt -- I guess I think we need to think beyond the definition of productive as money-making.

The word 'productive' is often used as a judgmental one to imply that someone is or isn't contributing to society/life/taxes.

There are people who are incredibly "productive" in the money-making sense but not ethical or otherwise contributing to people's lives.

I do get what you are saying that you want employment. But I think to tie that with the notion of being 'productive' is problematic. It creates a group of people who are, and a group of people who aren't.

I won't say that my son is not able to have work -- I will let life show me what is possible.

Hi Alexandra -- welcome to BLOOM. Hope to see you here more often and to hear more about your daughter.

Hi Sherry -- We have a speaker night this Thursday -- did you get the BLOOM e-letter? If not I can send you the info.

Yes, there are 49 of those books and after the author died, one of his sons took over illustrating the new versions. Kind of incredible really.

Thanks Marjorie -- I really appreciate your support. Yes, he usually does well at Kumon because he is coming from Fit and Flex and that always seems to put him in a good mood and more relaxed. I'll have to try that nickname -- kind of like rapping.

Louise,

I could live a extremely productive life without making a dollar. For example, you are fully arware that hope to further the cause of continued treatment and care for adults with disabilities at Holland Bloorview. I would love to travel the globe, lecturing on disability, while visiting special needs kids in remote or secluded orphanages, such as in Hati and Russia. However, I'll need an attendant, guide, and bodyguard.

Nonetheless, I also want a job that allows me to marry a women I adore and have a couple of kids, whom I will love more than the air I breathe --it's what D'Arcy did.

love
matt

Louise,

I'm just thinking out loud: "If Ben's life is meaningful, his life has value and he yearns for nothing."

I, on the other hand, can't say the same. Some may consider this a divide, but in some ways, Ben is luckier than I am. "He does not suffer."

Good night,

Matt

HI Matt -- Thanks for your messages. Nothing is black and white! Because someone's life has meaning doesn't mean there aren't things they wish were different. Life is full of pain and joy, no matter what your circumstances.

Ben certainly does not 'yearn for nothing.' He wishes he had friends, and he could communicate clearly and not be frustrated, and that he felt like he belonged, and that he could do things his siblings do that he can't. I'm sure he wishes he wasn't so small and many, many other things (like wishing he could get on a bike and feel the wind in his hair or swim independently through the water).

And having a job or getting married or having a kid doesn't mean that life is without pain. Look at how many people in the world have that and aren't happy.

And just because you have pain in your life doesn't mean your life doesn't have value. It's not an either/or proposition.

That's why I don't like words like "productive" which imply that someone is or isn't contributing -- life is not that black and white. And I believe every human has inherent value that is not dependent on them doing anything.

I think all of your dreams are perfectly natural but don't assume that people who have these things in their life are protected from pain.

Don't romanticize Ben's life or my life, because that is not an accurate depiction of the 'messiness' of life.

Louise,

I know two things about life. First, and you are right, "Life is full of joy and pain", as you can't have one without the other. Getting married and having kids are a perfect example.

Second, you might not always get what you want, but you may get what you need.

I guess, "I just want the means to choose --to a certain extent." Hence, if this means, "Pushing kids with disabilities to their limits, 'So be it.'"

Matt Kamaratakis

Social utility vs economic production?

Sounds like a great post to me.

love
matt

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