Disability Should Not be Inspiration Porn For the Abled

Sorry, I tried embedding the amazing TED talk by Stella Young, an Australian comedian and journalist, into this post but couldn't get the code to work, so I hope you'll go over and watch the video so you'll understand what this post is about. (Or you can read the transcripts.)

Ms. Young talks about something that I'm sure we've all seen, motivational posters like these:

And she makes a very valid complaint about them.  And I quote (emphasis mine):

And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

And she's right.  Disability should not be inspiration porn for the nondisabled.  We shouldn't look at people who have achieved things despite differences and/or hardships and say "I should do better because look at what they did".  Being disabled doesn't mean being unskilled.  There are levels of disability just as there are levels of ability and yet it's easy to throw everyone under the same label and render them all 'less' as a result, despite that individual's individuality.  And when you start with a negative stereotype it's hard to see the real person under the labels and preconceived notions of their abilities.

This is one of the reasons I'm happy seeing more diverse characters showing up in SFF and why I think we need more.  Fiction is a great realm to explore difference and ability without the social awkwardness that accompanies rethinking your beliefs and expectations.  In other words, it's easier to learn new things and change your habits when you're exposed to something new in private rather than in a situation where you have to react to something you're perhaps not properly equipped to deal with in a respectful manner.

Ms. Young goes on to say:

And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term "disabled people" quite deliberately, because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.

I remember quite a few years back when I was working at a drug store, one of my managers came up to me and told me to help a customer who was visually impaired.  The customer was in the aisle I was restocking and I'd already noticed him, looking down the aisle to see if he needed help.  He didn't and so, despite my manager's prompting, I left him alone.  Sometimes people need help, and if they're adults they generally know when that is and can ask for it.  I helped numerous people at the bookstore, sometimes because of vision or hearing issues, most often because we didn't have an elevator and so often brought books downstairs for customers to browse.  But I tried not to assume that someone needed help simply because they were different.  And this video makes me think I did right by that.

I read a book about blindness as a kid that really stuck with me (Follow My Leader by James Garfield, if you're interested).  It stuck that being blind didn't mean a person was unable to live on their own like everyone else.  Yes, there are things they can't do, but not as much as sighted people tend to assume.

Books have the power to teach people how to deal with situations they've never faced.  They also have the power to teach people how to better deal with situations they did badly in.  I once worked with someone as seasonal staff who asked me to call them by a particular pronoun.  I'm ashamed to say that I can't remember what pronoun they requested as my mind blanked during the conversation as I tried to figure out what was going on.  I now understand it better - due to following particular inclusiveness conversations in SFF circles - but it's too late to change my response into a more appropriate and respectful one.  Sometimes we can only learn from our mistakes and resolve to do better in the future.

Again I quote the talk:

People, when they say, "You're an inspiration," they mean it as a compliment. And I know why it happens. It's because of the lie, it's because we've been sold this lie that disability makes you exceptional. And it honestly doesn't.

...

I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp.

It's a really great talk and I hope you watch it/read it and take it to heart.

Book Review: Silver by Rhiannon Held

Pros: great characterizations, tackles tricky POV 

Cons: pack politics seem insane

When the Roanoke wolf pack’s enforcer, Andrew Dare, finds the lone wolf he’s been tracking in their territory, he’s horrified to discover the woman’s been tortured into madness.  He vows to help her find a home and take down whoever did this to her before they can strike again.

There are a lot of characters in the book, as several packs of werewolves are mentioned, though the author focuses of a few select people from each pack.  Because of all the people mentioned, however briefly, there’s a fantastic variety of temperaments and strength levels shown (ie, some women are dominant, others submissive, one man’s an alpha and a coward, another’s brave but submissive, etc).  This allows each character to feel like an individual rather than an archetype in the pack hierarchy (alpha, beta, mate…).  

Silver’s character is particularly interesting as she’s able to modify her pack status depending on the result she needs from those around her.  But her manipulations are only possible when she’s lucid enough to use them.  Which she isn’t, most of the time.  The author treats her madness with care, showing that, though she’s not always aware of her surroundings, she’s still a person with her own will and the right to make decisions for herself.  This is particularly important when her lucidity improves and people refuse to listen to her because all they see is the madwoman she was (and may be again).  I loved that it wasn’t clear if Silver’s visions of Death were hallucinations (as Andrew believes) or a real manifestation of their religion’s embodiment of evil.

Silver’s physical disabilities, particularly her arm that no longer works, are also dealt with well.  Her acceptance of her new limitations and lack of depression and self-pity are directly contrasted when another character is injured at the end of the book.  She’s shown as a character with true strength, despite her limitations.

I liked that the romantic elements were understated and felt real rather than forced.  The romance enters late and encounters realistic roadblocks caused by the plot and the problems the characters face.

Werewolves aren’t my favourite subjects because I find the pack politics of dominance and ‘no one matters outside our pack’ mentality insane and unsustainable.  Most of the problems in the book could have been solved easier and faster had the various packs communicated what was wrong.  The book therefore caused a bit of cognitive dissonance for me as I tried to wrap my head around how their system worked and railed against it’s stupidity.  And I acknowledge that this is my problem not the book’s.

On the whole I enjoyed the book and am interested to see how things progress in Tarnished.

TED Talk: Hugh Herr, The new bionics that let us run, climb and dance

TED has a lot of great talks on a lot of great topics and this one is no exception.  It's amazing how far we've come with regards to prosthetic limbs and bionics.

My favourite quote from the talk:

13:38It's not well appreciated, but over half of the world's population suffers from some form of cognitive,emotional, sensory or motor condition, and because of poor technology, too often, conditions result in disability and a poorer quality of life. Basic levels of physiological function should be a part of our human rights. Every person should have the right to live life without disability if they so choose -- the right to live life without severe depression; the right to see a loved one in the case of seeing impaired; or the right to walk or to dance, in the case of limb paralysis or limb amputation. As a society, we can achieve these human rights if we accept the proposition that humans are not disabled. A person can never be broken.Our built environment, our technologies, are broken and disabled. We the people need not accept our limitations, but can transcend disability through technological innovation. Indeed, through fundamental advances in bionics in this century, we will set the technological foundation for an enhanced human experience, and we will end disability. (13:38-14:51)

I tried embedding the video and for some reason it wouldn't work, so here's the link.

Mindsets on Disability

I had some great comments on my Special Needs in Strange Worlds reading list post, with more books to add to the list.  I also had someone question why I added A Spell for Chameleon to the list, when the character isn't, in point of fact, differently abled.  The book is in a category called 'problems with magic' and there are two books (one of which is Spell) where the protagonist doesn't have magic in a world where having magic is the norm.  You eventually discover that Bink, from Spell, doesn't really fit the category, but that doesn't stop him from being treated differently because people perceive that he's without magic.

Which got me thinking.  To what extent does perception create disability.  Could it be considered a disability to be the one poor kid in a school of rich kids?  Disadvantaged is probably the correct word, since the kid would be able to do everything the other kids could - potentially.  But it's that potentiality that got me questioning.  What if the other kids went horseback riding as a sport (something that was offered - at an extra cost - at my highschool).  Would that lack 'dis' able you?  Could you be perceived as being less because you couldn't do it?

So much of disability is considered so because it calculates what someone can't do - when compared with someone who's "normal".

In discussing this with my husband he said (and then wrote and edited) the following:

When a society has a clearly defined norm then it’s easy for members of that society to perceive any difference from that norm as a reflection of an individual’s ability when, in actuality, the perceived difference may have no correlation with ability at all.

For example, when explorers from western Europe crossed the ocean and met with indigenous people in the americas, they perceived them as less intelligent, and hence less able, due to their different style of living and beliefs.  Yet these same people had learned to tame the land on which they lived, and created thriving societies with complex social structures that had stood the test of time.  Looking back now it is clear to us that peoples, such as the Mayans and the Aztecs, had no lack of ability.  There is plenty of evidence that they had a firm grasp of architecture and mathematics.  Instead they had simply followed a different path and developed a different way of life from the Europeans.

Just as we now know that people from around the world are equally capable of intellectual thought, despite dramatic differences in lifestyle, one should not be so quick to judge the abilities of another based upon a perceived disability.  One person may not be able to walk like others, yet that doesn’t mean they are incapable of getting around.  Humans have an incredible ability to adapt to the circumstances they find themselves in.  Don’t be so quick to discount someone simply because they’ve had to adapt given a different set of capabilities than you.  You may be surprised when you discover that they have other capabilities which exceed yours.

What he said reminded me of a series of videos on youtube by Tommy Edison, a man who's been blind from birth.  He answers questions about what it's like to be blind.  Here's one on some of the perks of blindness, one on colours and one on dreaming.

I've also seen several great Ted Talks on the topic, by some exceptional people who have, what some would call, disabilities.

I tried to embed the videos but it didn't work for some reason, so I'm adding the links instead.  The first video is by Maysoon Zayid.  Her talk is entitled I got 99 Problems... Palsy is just One.

I strongly urge you to watch the entire video, but if you can't here are two of my favourite quotes.

"Disability is as visual as race.  If a wheelchair user can’t play Beyonce, than Beyonce can’t play a wheelchair user.  People with disabilities are the larges minorities in the world and we are the most under represented in entertainment." (11:34 - 11:58)

"I hope that together we can create more positive images of disability in the media and in every day life.  Perhaps if there were more positive images, it would foster less hate on the internet." (12:08 - 12:21) 

The second video is by Sue Austin, on Deep Sea Diving... in a Wheelchair.

In talking about how people's reactions to her changed once she started using a wheelchair she says:

“They seemed to see me in terms of their assumptions of what it must be like to be in a wheelchair.  When I asked people about their associations with the wheelchair, they used words like: limitation, fear, pity and restriction.  I realized I’d internalized these responses and it changed who I was on a core level." (1:02 - 1:35)

She explains that for her, a wheelchair represented mobility and the ability to do things she was otherwise incapable of.  And she wondered why the perception of a wheelchair was the opposite of the reality, and so started using her chair to create artwork, to help people see things differently.

My final example is a talk by Aimee Mullins on My 12 Pairs of Legs.

"From my experience kids are naturally curious about what they don’t know or don’t understand, or is foreign to them.  They only learn to be frightened by those differences when an adult influences them to behave that way, and maybe censors that natural curiosity or reigns in the question asking for them, in the hopes of them being polite little kids." (0:26 - 0:46)

She gives an example of asking a group of kids what legs they would design for her to be able to jump over a building and one asked if she wouldn't like to fly as well, "And just like that I went from being a woman that these kids would have been trained to see as disabled to somebody who had potential that their bodies didn’t have yet." (2:05- 2:13)

Now, these three Ted examples are all exceptional, but I hope I made my point, that so called 'normal' people put restrictions on those considered 'disabled' with preconceived notions of what they can and cannot do.

I don't want to say that some people are incapable of things.  We all are.  I can't paint with my toes, like this remarkable woman - or rather, I could, perhaps.  I've never tried.  Because I don't need to.  People learn new ways of doing things if the 'normal' way doesn't work for them.

And, of course, there's a huge difference between the experiences of these people and what happens when someone is subject to crippling pain, like Cat Valente's current, unfortunate experience with carpal tunnel syndrome.  Her post about her experience is both heartbreaking and enlightening, if you've never experienced something similar.

(Dis)ability is varied and complex.  And it should be just as varied and complex in our entertainment, including our books.  It's why I think Sarah Chorn's Special Needs in Strange Worlds column, first on her own website, Bookworm Blues, and now on SF Signal, is so important.

Notes From an Author Talk on Disability

Two days ago I worked an offsite for the store, where we take books to another location and sell them for the speaker.  As often happens, I didn't know much about the author or the book before going.  Unlike many of these talks, I was actually able to listen in.  And it's a topic I'd like to share.

The book was The Boy in the Moon written by Ian Brown, an award winning journalist for the Globe and Mail newspaper.  Sixteen years ago his son, Walker, was born with a rare genetic disease, CFC (cardiofaciocutaneous syndrome).  This syndrome is so rare it's estimated that only about 150 people worldwide have it.  His son is able to walk and emote, but cannot speak or swallow properly (he's fed via a tube).

This isn't the first author talk I've heard that I enjoyed, but it is one of the first where I took notes.  Please be aware that my comments are all paraphrased, despite how thorough I tried to be with jotting things down.  I've tried to keep the meaning of what he said, if not the exact words.  Parts in brackets are my own thoughts/comments/clarifications.  

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People are afraid of disability.  When you see someone who is disabled you are reminded of your own disability, your own weakness.  You're reminded of your own inevitable death.  You're reminded that you don't have control over your own body, that it will age and deteriorate.

While writing the book he mentioned that he had a lot of trouble with it.  When he started he didn't write what was true, he wrote what he wanted to be true.  Political correctness encourages this. [I was hoping he'd elaborate on this point but he didn't.]  It was only by describing Walker as he is, that it worked.  It was only when he stopped trying to make the boy sound 'normal', or when he stopped comparing Walker's actions and life to 'normality' that he was able to get at the truth of his son's life.

He used to think of Walker by way of comparison.  Why does he do that?  Why is he not normal?  He finally realized he should have been thinking 'he is this way' and interacting with his son as he is.  In other words, you need to pay attention to the present, to what is and not to what should be.

Disabled people are enormously important for social and empathetic abilities.  Fragility isn't the opposite of strength.  It forces us to think outside the box, outside the status quo.  They are also a reminder that we are not solely the product of our own doing.  For example, there is a bond of solidarity between the wealthy and the poor, even if the wealthy don't want to acknowledge that.

Our society is a meritocracy, meaning you only have worth if you merit it [via the markers of success: wealth, status, fame, etc.].  In our society success is the only crown of virtue even though the wealthy aren't necessarily wealthy because of their own actions nor the famous necessarily famous because they deserve to be.

He mentioned that pre-natal testing for disability made him nervous.  After their son was several years old he asked his wife if, knowing Walker would be born disabled, she would have had an abortion.  Her answer was yes.  Mr. Brown then reminded her that that would mean they wouldn't have Walker, to which she replied that it wasn't fair to say that, now that she knew their son.  That a fetus was unknown and unformed.  Their son was a person.  

Things like pre-natal testing only emphasizes perfection, they don't make room for chance.  "Chace is also gracious and generous."

He mentioned that group homes for the disabled in Canada focus on trying to make the lives of the disable as 'normal' as possible.  There's an organization in France, L'Arche, that does things the opposite way.  There, the disabled are able to live as they are, and visitors follow their way of doing things.

[He concluded with two thoughts, first by paraphrasing the ending of Paradise Lost, when Adam and Eve are kicked out of the garden of Eden.] 

You must find Paradise in yourself by seeing things as they really are.  This requires admitting what we can't do before discovering what we can.

The effort to accept the disabled as our equals, with a contribution to make, means we'd have to redefine what it means to be a success.  That struggle - to be considered equal -  is the cause of any repressed people.  It is always a struggle to not be thought of as one single, limiting idea - in this case disabled.  

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It was a very insightful talk, and one I think more people should hear.  It made me wonder, and not the first time, if terminology - or political correctness - causes more problems then it helps.  I can understand why it's important, but I wonder if, rather than solving problems, it just ignores the problem by creating new terms that keep people apart.  For example, I wondered a few months back what the most accepted (and accepting) term for the LGTBQ community was.  But how do you ask that if you don't already know the answer?  How do you talk about it without insulting someone simply by asking the question? (Or how do you push past the fear that you will insult someone by asking the question to ask the question?)  How do I learn what it's like to raise a disabled child if I'm afraid of insulting the parents who have the experience?  If I'm afraid the words I use to ask my questions will be wrong?  And how does creating PC terms help when in 20 years those will be the new slurs used to insult the group it's supposed to empower?

The idea of pre-natal screening brings up an interesting - and difficult - issue as well.  In the past, people with severe disabilities simply died.  It takes a lot of medical care to keep some people alive.  The question is then, should they be kept alive?  Should they even be born in the first place?

I read an article (that night) in Chatelaine (we got a free subscription and I'm finding I enjoy the magazine more than I expected to).  The article was about a couple who wanted their child but were told he would be born handicapped.  It focused on the new laws in the States that require the woman to have extra procedures done before the abortion can take place - and how devastating it was to go through those procedures after already having to make a heart wrenching decision.  Now, I'm not a fan of abortion but I am a proponent for the idea that a woman's body is her own and that only she has the right (with her significant other) to decide if she wants to have a baby or not or to abort or not.  And who can tell a couple that they should dedicate the rest of their lives to caring full time for a child who can't care for him/herself?  

It's a tough call.  I can't even begin to imagine how difficult it would be to want a child and decide to abort because the child will face a challenging life.  A life many people would question the worth of.

It's a decision my parents had to make when my mother was pregnant with me.  She caught the mumps and was told that her unborn child would likely be disabled because of it.  She was advised to abort.  After thinking - and praying - about it, my parents decided to take their chances.  And I was born, fully formed and perfectly healthy.  I imagine the tests they do now are more exact, but still, mistakes are made, muddling an already difficult issue.

I'm not looking for a pro/con discussion here about pre-natal testing, abortion or anything else.  I liked Mr. Brown's thoughts on perfection, on acceptance, on 'normality' and wanted to share them.  If you want to hear him talk about his son (at different ages), here are some interviews he's done.

For TVO, CBC, Podcast TV

And here's a link to L'Arche International, if you'd like to learn more about that organization. Their main page states the following:

Beyond Inclusion!

Now operating in 40 different countries round the world, L'Arche works closely with people with an intellectual disability so that each person can play their full role in society.

Turning dreams to reality, each of our 137 L'Arche communities is a springboard of opportunity where members with and without disabilities get customised support to discover, develop and share their unique - and often hidden- talents.

Individuals are invited to share fully in community life, in both residential and non-residential settings, as suited to specific needs and hopes. More than just inclusion, it is about making the most of life! We welcome you to our network. Together we can make it happen.