You Are Not Alone

“There are things I never thought I would do again. But there are lots of things I can do, so I don’t want people to think of me as a kid with arthritis. I want to be the same as everybody else,” she said.

This is a powerful little story about a girl with a condition unknown to most that, left untreated and unaccommodated, would destroy her life.  She is lucky to have the unwavering support of her parents and access to excellent medical care and practitioners at Sick Children.  I've taken my own kids there - they're the best.

Today I talked to a friend of mine who is profoundly deaf but, through assistive technology, is able to hear, speak and contribute her maximum potential to society.  Like Aaliyah, though, there's a great deal of personal bravery to this story, too.  My friend was sexually abused during her student years - she was the deaf kid, so an easy target.  She faces daily the stigma of a hearing world that sees her as abnormal.  If you doubt that, then answer this - would you want a profoundly deaf woman to be the mother of your grandkids?

Someone I haven't been able to reach recently is another young woman, a friend with co-morbid mental health conditions, including Attention Deficit Hyperactive Disorder and Depression.  I wonder how many people are proactively trying to reach out to her - and if her feelings of perpetual loneliness are simply being reinforced by the cone of stigma she lives within in a world that shuns the abnormal.

These are three individuals who know what their restrictions are and have, at least to some degree, access to supports that help them function as normal people.  Still, it's tough.  What about the countless sufferers of chronic pain, physical impairment that's just not quite obvious or worse, a mental illness that gets interpreted by most as behaviour issues?

“Over 4.6 million Canadians live with arthritis. But how many would guess that so many of those are under the age of 16, or that arthritis is among the most common of childhood chronic conditions,” Arthritis Society president Janet Yale said.

People are busy.  They don't have time for things that aren't essential.  The more important people are, the busier they get - and the more aggressive they need to be to get through their day, achieving whatever goals they have set out.  If you can't help them, you're either irrelevant or a hindrance.

The kid who won't play certain sports in class because they say it's ouchy?  They're the class-problem. 

The exasperating employee who's always stuttering or avoiding their manager?  Can 'em, they have no value.

The senior who's not quite all there?  Well, that's a sales opportunity waiting to happen.  It's a tough world, the strong survive and besides, if you don't hook the sale first, someone else will.  Some people, after all, are just marks.

Like my deaf friend who, funny enough, now works in HR.  A generation previous - and in most places, in her generation - she'd have never been seen as more than a target or a failed person.  With some technology and support, she's now making an organization work better.  Like I said, funny.

We are, each of us, flawed human beings - the would-be prey and predator both.  These inclusions of the body and mind give us each different challenges, differing opportunities that can never be fully mastered individually.  Why, even the predator is fruitless in the absence of prey. 

When we're transparent, though, we can reflect together and become conduits for a light the likes none of us can produce individually.  The telephone was created as an accommodation for deafness - now, we all benefit.  Challenges create opportunity that innovation solves and a good marketing mind will sell.  As for the disability itself - if you're too busy to delve deeper than an easy label, you never know what you could be missing.

Remember, though, that the reverse will also be true.

Response to Comments on Tammy Hart and Diversity

As a woman in poliltics, Tammy Hart should be proud of what she's done.  There was a time where women were far more marginalized in society than they are today (though we still have a long way to go).  It would be nice to see her equally support other groups in her community that have been marginalized.

My response to a letter by James' Borer about Tammy's position against support the French community, below. 

It is nice to hear that Tammy is making the time to learn French!   As she makes progress, she’s going to find that speaking a second language in no way threatens her original tongue.  It’s the same thing with New Canadians; an influx of new ideas and new traditions doesn’t diminish what came before, but enhances the mix.  Call it social genetics.

While there’s some value in representing the fears of one’s community, politicians have an obligation to balance those concerns with building the local tools needed for success in the future.  That’s why I’m glad to see Jim Brownell’s name raised here, as this is something he was a champion of.

During his time as MPP, Jim Brownell was challenged to support an important cause on behalf of a minority of Canadians – the deaf and hard of hearing – by James Borer (I know this because I was Jim’s Executive Assistant at the time).  Thanks to James’ work and Jim’s commitment, Ontario now funds cochlear implants for both ears deaf kids in Ontario, as well as providing support services.

Now, this is all at the taxpayer’s cost.  You and I, whether we’re deaf or not, are helping deaf kids to hear.  This assistance allows for kids who would otherwise exist at the margins of society to be teachers, athletes, fully-contributing members of our society.  Watch this video to see what a powerful difference your tax dollars are making: http://www.youtube.com/watch?v=yQdz1WAtEuQ.   

As traditional manufacturing jobs leave for emerging economies like Brazil and China; places who don’t accommodate their citizens (to growing civil unrest) and the Stephen Harper government is focusing on other parts of the country to be our economic drivers, it’s up to local politicians to think big and find new ways to strengthen our communities. 

Tammy’s view of keeping diversity at bay, reducing centralized government and focusing on owning land over developing skills is not the answer.  What good is it to have no French in your community, no support for New Canadians, own a big plot of land but have to fly to Alberta every week for work?

SDSG’s growing level of diversity is what will give it an edge, if politicians like Tammy can think outside their traditional box and seize the opportunities of the emerging Knowledge Economy.  There are huge markets out there in the world that speak French.  What opportunities are they looking for?  What online services can we develop and sell to them?  Beyond that, what other emerging global opportunities can solutions be designed for right in the United Counties?

As Tammy really drills down into French, she’ll find herself blessed with not only a new way of expressing herself, but an additional world view.  This is a powerful tool to have.  Diversity, as evolution shows us, is what will keep us moving forward.

Don’t Panic: Diversity Is Good For You

“I beg of you not to do this to my daughter… and not to do this to Ontario’s children.”

Charles McVety speaking out against Gay-Straight Alliances in Ontario schools

“Whether you believe deafness to be a disability or not, Deaf cultures and communities are part of Ontario’s cultural diversity.  Thus, Ontario government has no business favoring the Hearing world over them.”

M Jordan expressing his fear of “deaf genocide”

We’ve got leaders railing against the perceived threats from foreign students and foreign workers.  In Quebec, there are language laws to protect and maintain the authenticity of an evolved dialect of Latin.  In other parts of Canada, there are staunch opponents to national bilingualism, despite the evidence suggesting that knowing more languages provides greater opportunity and can reduce risk of Alzheimer’s.

To me, these are all variations on the position of not wanting a daughter because 1) she can’t carry on a family line and b) she’s going to be taken away from you.  They imply a fear of loss, of subjugation, of losing out to another.

They are all instinctual, reactive positions.  They might feel right, but they aren’t based in fact.

Having a son-in-law is not detraction; it’s an addition, a linking of families, a provision of new opportunities for partnership, expansion and growth.  Plus, if there are grandkids, your genes get carried on anyway.

Learning more languages doesn’t steal from the richness of mother tongues – it adds to one’s capacity to think in different ways, come up with better solutions and develop competitive advantages.  In a global economy, who doesn’t want multilingual employees?

Deafness is a condition of biology that getting cochlear implants doesn’t change, only accomodates.  Having assistive technology enhances your ability and can actually facilitate cognitive development (plus, you can still turn them off when you want silence).  There aren’t separate “deaf” and “aural” worlds – there’s just one world.  The only question is how much access to it do you have?

Foreigners are the embodiment of diversity – you can feel they threaten your genetic/culture superiority, but what they really do is challenge your stagnancy.  We’re all about innovation, right?  Infinite diversity allows for infinite combinations.  We want more diversity, not less.

Gay isn’t a contagion.  Hearing about or even seeing gays kissing doesn’t impose any physical “risk” or “contagion” (even if you feel that it does).  For that matter, science isn’t a threat to religion any more than religion as a concept is inherently an impediment to science.

We all inhabit this small planet.  We all breathe the same air.  We all cherish our children’s future.

And we can only move forward when we do it together.

Falling On Deaf Ears: Educating Children With Hearing Impairments

“For Ontario to be at its best, we need every Ontarian to be at their best.”

       - Ontario Premier Dalton McGuinty

Stephen Harper would love the Ontario Association of the Deaf (OAD) position in favour of maintaining the current number of provincial schools; their argument has “firewalls” written all over it. 

Harper, remember, has intentionally gotten out of the health care game.  At a time when demographic changes, technological advances and financial pressures are causing our outdated health care model (it can hardly be called a system) to buckle, the Prime Minister has thrown a couple bucks at the provinces and said “you’re on your own.”  This is absolutely the worst approach possible; efficiencies and excellence of care are found through systematic integration (like Family Health Teams), not by multiple parties operating in uncoordinated silence.

But we’re talking about schools for the deaf.  We’ll get back to Harper later.

Seperate but Equal

As part of its call for a reduction in duplication, gaps and overlaps stemming from our current silo-based service delivery model, the Drummond Commission has called for a consolidation of provincial schools for the deaf.  The provincial school system removes children who are deaf/hard of hearing  from their home communities and the normal education stream.  Instead of being in regular classrooms, these children receive separate education based around sign-language, “the native language of the deaf”.  Note - Drummond isn't caling for the end of such schools entirely; he's simply suggesting the number of students in the existing provnicial school system doesn't support the quantity of aging schools we have at present.  The big “D” Deaf Community favours these schools; they see the provincial school system as a nurturing ground for “deaf culture”, which they feel is distinct from “hearing” culture.

In their letter to the Premier of Ontario, the OAD suggests that “no real changes have been made to ensure that Deaf people are treated as equal to hearing people in Ontario.”  The changes that the OAD seeks are a higher level of support for “deaf culture” in the way that First Nations have rightly decried the systematic campaigns that have been waged against their culture. 

Two things on this score:

Talk to the Hand

One, there’s a chillingly familiar ring to the “separate but equal” message.  It’s hardly a new notion; people throughout history have sought to isolate themselves from others, either to keep a focus on “their” values and belief system, or to block out influences they saw as negative or protect from the perceived threat of the “other.” 

In the case of the Deaf community, the fear is a loss of culture through integration.  They (rightly) feel that being deaf isn’t unnatural, that an inability to hear results in a different world view.  They are absolutely correct about that; those of us who can hear take hearing for granted and would feel lost without this sense.  But is the “deaf” way of experiencing the world at risk through social integration?  Other “cultural” groups have recently advocated for “separate but equal” education funding for their community world views, with less than universal support.

Funny enough, the Deaf community also uses the “excess burden on the majority community” meme in their argument.  They contend that community schools would have to spend more money for appropriate resources to support deaf children, should they be integrated into the regular school system.  Here’s the rub, though – when community schools and their boards see deafness, or learning disabilities, or any niche need as “not my problem” issues, they don’t invest in them. 

It’s really a counter-intuitive approach; the end result is that far too many children with hearing loss and other learning challenges aren’t identified and never receive the help they need.  As a kid with ADHD who was always in trouble with my teachers for not copying lengthy notes off the blackboard fast enough, I found elementary school more of an endurance test than a learning opportunity (I wasn’t diagnosed until high school).  Why on earth would we want to exacerbate that problem, especially when it results in bullying, suicide, family problems, underemployment, crime, etc?  We have to start looking at specific social problems for what they are; shared challenges that require collaborative solutions.

Can You Hear Me Now?

Two – what is the risk in one person having two cultures?  This is an age-old quandary; the existence of Québec language laws is based around the notion that an increase in one culture automatically threatens the existence of another.  Parents used to be told it was harmful to teach their kids two languages at the same time, as it meant they wouldn’t learn either one fully.

I’m an anthropologist by training, so I look at this dualistic perspective differently.  Culture isn’t an immobile, eternal thing – it’s organic.  Cultures evolve through time; French itself is a variant on Latin, just as English is mish-mash of several languages, including French.  To suggest that a worldview is in danger is to imply it is stagnant, which is never the case.  Besides, innovation doesn’t come through isolation, but from diversity.  Alexander Grahame Bell might never have invented the telephone if the deaf people in his life had constantly been isolated from him.

The same applies to the modern classroom.  Finding supports for the individual needs of students has always resulted in stronger, more effective teaching models and classroom environments that benefit all students.  Kids (and adults) with vision impairment aren’t removed from society; they are equipped with glasses.  In addition, text fonts get bigger and clearer, making it easier for all kids to see and absorb lessons.  Same holds true for deaf kids; technology exists to help the vast majority of deaf children hear just as well as anyone else does.  The presence of deaf kids in the “normal” classroom promotes sound dampeners on chair feet and sound amplification systems, helping teachers reach every student, particularly useful in large classes.

Placing deaf kids in normal classrooms doesn’t create an unnecessary burden; it provides incentive to make the system better for all.  When you get down to it, that’s the whole point of society in the first place.

Key to creating the right environments providing the right supports is early-identification and accommodation (something already understood, as evidenced by the growing focus on health promotion).  Communication and language acquisition isn’t just about speaking, or listening, or signing; it’s about cognitive development.  Just as undernourished children face greater, unnecessary limitations as adults, the same holds true for kids who aren’t given proper exposure to the full spectrum of communicative abilities as their brains develop.  As we get older, our brains switch gears from absorbing new information and developing new neural pathways towards solidifying existing ones; it’s why it’s harder to learn new languages as you age and why older people tend to be more inflexible in their opinions than youth.

Listening to the Voice of Reason

As I have written elsewhere, the core message of the Drummond Report was that our current, silo-based model of service delivery is failing us.  Individual groups competing for funding to provide variations on the same suite of services are costing us far more than necessary, creating a whole range of new problems in the process.  Like a well-loved old sweater, we might be used to this model, but the problems it is causing are now tipping the scales in favour of change.

What we need now is leadership willing to take on the challenge of reform.  To succeed, our leaders need a deep understanding of how the various social pieces fit into an integrated whole, plus the courage and patience to help the rest of us connect the dots.  There is a hopeful future waiting around the corner, but we can only get there if we’re moving forward together.

That means letting go of yesterday’s stigmas and looking for opportunities to work together tomorrow.  It means accepting the mistakes of the past and addressing them today; we all know what happens to those who refuse to learn from history.

Which brings us back to Stephen Harper. 

In what will likely be defined as his greatest moment as Prime Minister, Stephen Harper issued an apology to First Nations/Métis people for their isolation through the residential school system.  In this apology, Harper spoke the following words:

“We now recognize that, in separating children from their families, we undermined the ability of many to adequately parent their own children and sowed the seeds for generations to follow, and we apologize for having done this.”

Maybe he wouldn’t support the OAD’s position, after all.

Conclusion

People with hearing loss – “the deaf” – have unique experiences of the world, resulting in unique world views.  This doesn’t have to be their only world view.  Technology exists that allows the vast majority of children who are deaf or hard-of-hearing to be full participants in main stream schools, develop to the maximum of their ability, then contribute those abilities to the greater good of our society.  Having these children in regular classrooms will result in a need for stronger identification and accommodation practices in our schools.  That’s a good thing, because the need exists already – we just haven’t had enough incentive to address it completely. 

When deaf/hoh kids participate in regular schools, they aren’t the only ones who gain new perspective; the same applies to hearing teachers and kids.  By being forced to pay attention, the “hearing community” will have reason to learn more about the deaf worldview – and benefit from it, just as Alexander Grahame Bell did.  This sharing of ideas will enhance the perspectives of all involved, promoting understanding and innovation, while also encouraging more efficient, integrated service delivery.  Which is exactly what the Drummond Report called for.

Social success is not to be found through standing against, but rather, through working together.  Communication, after all, is a two-way street; we can’t learn from each other if we’re aren't prepared to listen.