I gave a presentation a few weeks ago to a group of Masters-level students. The particular course was ‘Topics in Bioethics’ (or something similar) and for my session, the topic was ‘disability’. The ethicist for an adult rehabilitation institution gave a presentation, then I followed with a first-person perspective.
I can talk about my story practically in my sleep – so no issues, right?
I started out a bit stilted and uncomfortable – I skipped over notes, forgot what I was saying, heard myself talking instead of attending to simply talking. I felt like I was on display and wished several times I could just start over.
Thankfully my ‘presentation memory’ kicked in and I eventually found my groove. We ended up having a good discussion and I doubt the students were judging me. The part about being a bit flustered doesn’t really bother me – I simply wasn’t as prepared as I would have liked. Also, as the teller of a ‘patient story’ no one is expecting me to be slick.
But here’s the thing: I left feeling drained, and somewhat, um, compromised? To be clear, I am sure this had nothing to do with the kind and engaging people who invited me, or the attentive professionals in the class.
No, something much bigger was brewing: I felt like a stand-in – a second-rate proxy, once removed, of what should have been a first-hand account. I am the parent of a child with severe disabilities who could not for the life of him tell me what it was like to be him. So actually, I have no idea what it’s like to be disabled.
If Owen had lived to adulthood, his interests would surely have been significantly different than mine. Even during his life, this was true. My interest was in protecting him and trying to create a ‘normal’ life for him and my family. Where these his interests? I sincerely doubt it.
Now, I am not discounting my experiences or the value in sharing my story. I am quite clear to myself as to why I share my story: to let others know that there is more than one way to think and be in the world (related to engaging with healthcare and severe disability).
What I am questioning is, what sort of contribution did I make to social discourse about disability itself? How qualified am I to represent or address the topic of disability?
While this small episode in my life had a happy ending – it turned out to be a good-enough presentation and everyone left with something to think about – it’s revealed to me a more uncomfortable truth about myself: I’ve come face-to-face with my own complicity in being the stand-in that makes disability more palatable to the non-disabled.
After thinking further about Bill’s accounts of being discounted, excluded and worst of all, ignored, I am starting to see his point. I intuitively know that Bill’s impression is right: no one wants to deal with people with disabilities. In his words, no one gives a shit. For many of us, it’s an uncomfortable experience to be in the presence of obvious difference, perceived vulnerability, awareness of societal failure. And more importantly, we don’t have the time or patience or interest to understand how they are impacted by our discomfort. We don’t want to know how society has failed them. Those who are angry or frustrated are especially easy to ignore.
So this particular experience aside, I think I am often invited to speak as a convenient stand-in – or I should say, I offer myself as a convenient stand-in – an articulate, dispassionate speaker without an axe to grind and who doesn’t make anyone uncomfortable.
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As you might have discovered in Part 1 of this post, Bill is old-school. Stories of civil disobedience, occupying before Occupy, resistance and refusal – all possible when there was no precedent, and there just weren’t that many disabled people out and about. When he was a college student in the ’70s, a new world was sorting itself out. Today, society tries to console him with process, forms, tight-lipped politeness and by-laws. He occasionally resists and refuses anyway (he grows weary), but there’s no admiration or support. In fact he’s deeply criticized by many, reviled by some.
I, on the other hand, am a quintessential good Canadian. My ease with speaking, the ‘tie it all up in a bow’ sort of way I summarize massively complex and nuanced ideas, the lightheartedness with which I can share adorable photos of Owen now that it’s all over – all of these things help make disability consumable and palatable.
I now see my complicity in crafting an easy persona to suit public sensibilities. The audience and I can pat ourselves on the back for doing good work, and in the meantime Bill still can’t get in through the front door.
One option would be to invite someone with a disability to come with you! I have the option of inviting Jessie, which I do when I speak … nothing about me without me is the rule in our house. Or, sneak them in with you! Is it okay if I bring a friend? who would say no!? Curiouser and curiouser!
in peace and thoughtful rebelliousness
Nan
Thanks Nancy – great idea about inviting someone. In many cases I’m sure it would be quite welcome…
HI Jen — I get your point about how a parent is one person removed from disability. But it seems extreme to say that what you strived to give Owen was probably not what he wanted (or didn’t reflect his interests in life). Do we really need conventional speech to have a pretty good idea of whether a child is happy or not?
And I think you have spoken in a very honest way about your experience with children’s rehab and its shortcomings — in a way that probably was uncomfortable for some professionals in the audience (I’m thinking of a couple of talks at Bloorview).
I would not call your speaking style dispassionate!
But I do get your point about how people generally don’t want to “deal” with disability and have to have it presented to them in short doses and in a way that isn’t necessarily authentic. I thought about this when I saw all of those photos of Alex Bilodeau and his brother together. It bothered me that people would jump on the bandwagon seeing the two brothers celebrating an Olympic medal but not think more about Frederic’s life or what Alex was saying about it (interesting that I don’t think Frederic was quoted!). Like they were happy to see this heartwarming photo but not to think about what daily life is like for Frederic.
I always enjoy reading your pieces and hearing what you think!
Hey Louise!
“Do we really need conventional speech to have a pretty good idea of whether a child is happy or not?”
No, but this wasn’t really my point… ‘Interest’ meaning, based on life stage and preferences, what are one’s priorities? My priorities for my young children included (for example) safety, shelter, education. Those were my interests in their well-being. Their own interests are very different – Angus, for example, did not share my concern that it was too cold to not wear a jacket. His primary interest would have been to get outside NOW. Owen was probably not as invested (or ‘interested’) in his own growth and development as I was – and unfortunately he was never in a position to actually communicate his interests to me. So I believe it’s simply true that I personally can’t represent ‘disability’ in any way – I can only represent my own experience of being a parent.
“And I think you have spoken in a very honest way about your experience with children’s rehab and its shortcomings — in a way that probably was uncomfortable for some professionals in the audience”
Perhaps. But my behaviour is highly consumable. I’m not having muscle spasms or using assistive devices or speaking too slowly or drooling or doing anything physically uncomfortable to watch. And I do actually think my presentations are highly dispassionate – people may feel emotional in response but I’m not exhibiting emotions or ‘reliving’ anything. Not as slick as a TED talk but is essentially the same packaged messaging intended to make people think but not rile them up too much :)
Hi — Yea, I see what you mean. And your talks are probably somewhat dispassionate because you’ve come to realize that people are more receptive to that, and feel less threatened by it.
I’m very glad you wrote this. You are such a a thoughtful person and writer. I always enjoy reading what you have to say — your words are profound, but very clear and always leave an impression.
This is something I think about too — my son is preschool age with Down syndrome and he can speak pretty well in addition to expressing his desires quite clearly! But as I advocate for him, I often think of the difference between simply bending the branches for his sake, as you so eloquently put it, and doing things that will bring lasting change for others. So far, I feel very far from accomplishing the latter, and in fact it might take me a lifetime to do that even in a small way; it’s frustrating at times to think that, even though my son has had wonderful opportunities for himself. I try to be involved with our local group to support programs that have a wider impact, like advocating for more inclusive education. I also try to tackle some things in my writing, though that has lagged of late.
What else can we do as parents? How can we make a more lasting difference? I will teach my son to be a self-advocate, of course, but there must be a good supporting role that we, as non-disabled adults and parents, can play. Will be checking in for more of what you have to say.
Hi Vicki – thanks for writing! You might be interested to see what Claire has to say in a video I produced recently. I’ll be ‘announcing’ this site shortly but it’s already up. See Claire’s 2nd video: http://conversationlibrary.org/project/claire/
Great post Jennifer. There are different fronts to advocacy, I believe. It’s true that there should be more representation from those who are actually disabled in terms of speaking engagements….and I am certain one would be told that no such people exist, ahem…the role/perspective of the enlightened caregiver (ah, “enlightened”) is significant as one type of representation in disability advocacy. As for being a good Canadian, I would say that the cultural nuances of your audience needs to be taken into consideration in any presentation. Whereas it may be considered appropriate to be the John Wayne/cowboy/Rambo sort in the U.S., that would not fly in Canada, where the British influence (polite, stiff upper lip) runs deep (even in multicultural Toronto). If you want them to listen, you have to meet them at their level..and nudge from there, don’t you think? It’s long, slow work, but I think the influence would accrue over time to created a forceful message.
Hey Claire – you’re totally right. I’m sitting on the fence as to whether my new awareness actually means anything. I will probably continue to give talks even if I’m the stand-in – because in some cases if I don’t, it’s just another stand-in who will be asked. Might as well use any platform I’m given. However I will be more aware of how I’m perceived and will deflect or call out misappropriation of my purpose or message.