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Monday, March 17, 2014

My Brother Teddy: Artistic Indulgence

I sent a link to the below six minute film to a friend. I did not know how to react--I could not grasp the significance of the film. And the film is significant. It is part of a larger project being undertaken by Kelly OBrien an independent film maker that lives in Toronto. The short film has been critically acclaimed and given its appearance in the NYT it will be widely seen. It is an impressionistic film made by parents of two children--Teddy has cerebral palsy and has a significant physical and cognitive deficits. Emma just turned ten years and is a typical child. The film is told through the eyes of Emma who talks about her life and love for her little brother Teddy.


My friend in a mere two words characterized the film perfectly--artistic indulgence.  The film is undoubtedly captivating. Emma is sweet and kind. She has a lovely voice and the imagery is nothing short of wonderful. It captures a set of Emma's memories of childhood and her relationship with her brother. Teddy's disability is an integral part of their lives. Emma loves her bother unconditionally. There is no doubt in my mind the film will be well received by a wide range of audiences.  I can readily envisions some viewers will shed tears. As a parent I get this. Childhood is all too short and as my son approaches his graduation I am often taken aback--I got old somewhere along the line and spawned an adult.

If the film is so captivating why am I troubled--and deeply troubled I am.  The film is beautiful. Far too beautiful and entrancing. It is hypnotic in fact. It perfectly captures the beauty in sibling relationships and the innocence of childhood. What is utterly absent is reality--the grim reality of what life is really like for a child like Teddy who has severe physical and cognitive deficits. Absent is the fight for appropriate adaptive equipment. Absent is the fight for a quality and appropriate education. Absent are the barriers to good health care. Absent is the lack of accessible housing and mass transportation in the form of school buses with a lift. Absent is any semblance of the reality involved in raising a child like Teddy. Absent is what will happen to Teddy when he turns 21 years old and transitions into meager adult services.

I do not like to write the above. It makes me feel hard and cold; cantankerous for sure. Should I not be happy a film maker finally produced a short film that portrays the beauty of disability and the relationships it fosters? Should I not celebrate the obvious love Emma feels for her brother? I should but I just can't. The day to day life for people like Teddy is just unacceptable. Worse, the reality for Teddy once he becomes 21 years old is even more circumscribed and limited. This is a decision made by society that assumes life with a disability is inherently limited. We decide not to provide or value the needed social supports for people like Teddy. The fact is the timing of the film is bad--these are hard times for people with a disability. The lack of resources and energy directed to enhance the quality of life for all people with a disability is woefully lacking.  So here I sit and feel like Scrooge.  I am sorry but as lovely as the film is I live in a world where my existence is not valued. Collectively we have created a draconian system that is based on a form utilitarianism that literally destroys lives. I am at risk but with the support of others manage to live a full and rich life. I hope Teddy and his parents can create a similar set of significant social webs. Without this,  I worry about Teddy's future as well as mine.  Social isolation is a terrible thing can and does kill the human spirit.

8 comments:

Lynn said...

*Sigh* It's kind of a Catch-22.

On the one hand, you already KNOW, from deep personal experience, what it is to be inescapably appreciative of a person's full humanity, in the context of (not just "in spite of") significant disability. A lot of people just aren't there. And then, when you try to have the "why it's reprehensible that there aren't adequate social supports" conversation, they're squinting at you and feigning acknowledgement while secretly thinking, "But... WHY...?" If a film like this gets more people to a starting point where they can comprehend why all of those other issues are important, then it's accomplishing something that more pragmatic social and cultural analysis cannot.

On the other hand, for every person who internalizes the emotional content of this piece and thus becomes more receptive to the related social justice imperatives, there will be others who use it to immunize themselves against those pesky realities, and do the "la-la-la I don't hear you" thing, or worse, "Shut up, you bitter Scrooge! I am blissing out on the beauty of that Teddy film, and you are KILLING MY VIBE!"

People are willfully dense that way. But I'm not sure a film like this can reasonably attempt to fix that while still doing what it set out to do... the question is how to get people not to stop there, where's it's all sweet and soft-focus and comfortable. People need to get that the innocent perspective of a ten-year-old can inform and deepen their understanding, but that it takes more than a ten-year-old perspective to solve real-life problems. I still think the film has something to say, though, to the far-too-many people who have never looked at a child like Teddy through a lens other than pity or utilitarianism.

Jisun Lee said...

"If a film like this gets more people to a starting point where they can comprehend why all of those other issues are important, then it's accomplishing something that more pragmatic social and cultural analysis cannot."

That's where I get stuck on this stuff. I think in the end, what bothers me is that there is not enough of the reality, and soooo much of the inspiration/bliss/hugs/life-affirmation. All good and ok, but there isn't the balance. And if you look at what is presented as "normal", then you do see the balance. You see the ranty mommy sites about how hard it is to be a parent, you see the airbrushed pictures of the child blowing a dandelion in a verdant green field. You see the happily ever after marriage, you see the ugly divorce.

But as someone who recently entered disability culture, and as a parent, I can say that the reality was something I'd never been exposed to. Some from willing ignorance, and some from simple lack of mainstream exposure.

I also think there has to be some more nuance here. Why does it have to be sparkles and tears, or angry fists? Both are legit in their own ways, but where is the in between? Because that is the reality in which most live, right? I'd like to see more of that.

Shaya and Tom said...

I've been reading your blog for a while and quite enjoy it.

I actually do think the film deals with some of the harder realities when she discusses Teddy's future. The film is very clearly from Emma's perspective and the adult voice shows that there is more to the story than what Emma sees. As a viewer it was very easy to read into it that there would be struggles. No, the film doesn't address the need for governmental and social support for disabled people but I also don't think it interferes with that political goal.

william Peace said...

Comment by Laura I deleted in error:
It's a short film, meant to show one aspect of their life with Teddy. Perhaps her larger work deals with some of the harsh realities those of us who love those with disabilities face. But even if it doesn't, I think the message of love for and the worth of Teddy is a powerful one that more people need to experience. Emma's obvious cherishing of her brother does not envoke pity or even admiration-she's just a little girl who loves her brother and I adore that.

AZ Chapman said...

u do not know that teddy has cognitive disabilties he has severe physical disabilities but u do not know about his cognition

Middle Child said...

You are just saying it as it is...sometimes it has to be said

teddy said...

I've just came across your blog. I'm the filmmaker of this short piece that you find so troubling. The film I made is 40 minutes and it deals with all the issues you raise. This short film was adapted from the longer one. I was asked by the NYTimes to make a shorter version from Emma's perspective because you don't really see that much. In fact you don't see much about disability period. I was happy to oblige.
Kelly O'Brien

william Peace said...

Kelly, We are on the same side of the fence in terms of equality for Teddy and all people with a disability. We are merely approaching the same struggle in a very different way. I do hope the complete version of your film reaches a wide audience. Hence your decision to post a short version at the NYT was wise.