Standing Up for Human Rights in the Disability Community

I have waxed poetic (or, hopefully, at least semi-poetically) on the subject of human rights several times over the years on this blog. And yet it will come as no surprise to those who really know me that my true passion in the area of human rights involves the disability community.

On my legal blawg, I have discussed at length a variety of issues, including education, transportation, recreation, employment, medical care or housing - all of which, bottom line, deal with the right to equality, the right to have the same access to the same services and (even more importantly, the same opportunities) as everyone else,

Yes, there will always be those that have it worse than you and I, than mine and yours. But just think of what it must be like to live with a disability in a third world country or a country where you are, irrespective of your disability, of the *wrong* gender or race. Then again, come to think of it, you could be an Aboriginal child with a disability living right here in Canada. Think of how much worse your life could would be.

But that really isn't the point, is it?

Of course not - the point is that no matter where we live, no matter who we are, we are all entitled to the same basic human rights. Not because the government of the day happens to agree or because we live in relative wealth, but because of one simple, inescapable fact - male or female, old or young, no matter our race or gender identity or sexual orientation or any other difference, no matter where we happen to live on this earth ...

We.

Are.

All.

Human.

And yet, simply *having* these rights is obviously not enough. Like any other "right", such rights would be meaningless without a mechanism of enforcement.

And as I turn my mind to the legal world, to "the law", I can only sincerely and humbly thank those who had the grit, determination and drive to realize the obvious and fight to have those rights enshrined as part of our law. And, in Canada's case, not just as part of the law. but as part of the highest law of the land, our Constitution.

But, sadly, two steps forward and one step back seems to be the way of life in so many ways. For even though sec. 15 of the Canadian Charter of Rights and Freedoms guarantees that every individual is "equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability" and even though Canada is a signatory to both the Universal Declaration of Human Rights and the United Nations Convention on the Rights of Persons with Disabilities, we are still forced to stand up and fight for these rights over and over, right here in Canada.

So it is that I can only offer my eternal gratitude to those, both inside and outside the disability community, who have stood up to demand that these rights be, not just recognized, but given real meaning; to those who have stood up for the rights of our parents, our siblings, our children, our friends, ourselves.

But as I write this I realize that what concerns me, personally, most of all in this matter are those in the disability community who, for whatever reason, will not stand up and be counted, not stand up and be heard, not stand up and support others in their fight for equality. For it is only if we all stand together that any one of us can be truly successful. And so I leave you to ponder the famous words of Martin Niemöller:

First they came for the Jews
and I did not speak out
because I was not a Jew.
Then they came for the Communists
and I did not speak out
because I was not a Communist.
Then they came for the trade unionists
and I did not speak out
because I was not a trade unionist.
Then they came for me
and there was no one left
to speak out for me.

Headwinds and Tailwinds *

I have become quite a fan of a new blog I discovered a few months back.  The name is Kilometres for Communication - you can find it on the sidebar.

What's it all about you ask?

This blog is about communication. It’s about a special kind of communication called AAC. (I personally struggle with this term; it stands for Augmentative and Alternative Communication, which is too much of a mouthful for me. AAC is simply an alternative way to communicate when someone has limited or no speech.) This blog is about disability, and navigation of disability in a society which orients itself towards people who are able-bodied. But this blog is also about ability, diversity, capability, possibility, hope. It is about our humanity, and about our connection–one person to another. It is about community and inclusion, and about how wrong it is for any of us to exclude and to make the decision that someone does not belong because he or she is different. So this blog is also about the importance of accessibility, because accessibility is a key to inclusion, belonging and community.

A family affair - the 17-year-old younger brother of "an artist, educator, social activist, writer, story teller, gardener, community facilitator [who] happens to travel in a wheelchair and communicate with AAC" proposes (family in tow) to cycle across Canada to ... well, how about if I let them tell you?

We would meet with people who speak in creative and diverse ways, and with the help of the media, introduce them to Canadians so that never again could they equate not being able to speak with not having anything to say. We would invite people to wheel, walk, run and cycle with us, and we would invite organizations, small groups of people and individuals to host events across Canada to raise public awareness and funds to empower voices and to make accessibility and inclusion a national priority for the more than 3 million Canadians with disabilities.

Although a lot of people have walked, ran, biked, etc. across Canada to raise money and awareness on issues like cancer and for other "good causes" and the man in motion is back at it (actually I'm not sure he ever really stopped), I've never heard of anybody doing quite this. I've never heard of anyone giving a voice to people who struggle to communicate in our world quite this way.

And, as if that weren't enough, Skye (the main writer of the blog) often amazes with such a beautiful voice for such a young man.

The blog sets out his cycling journey from West to East coast (he is currently in Manitoba) but he ends many of his posts by connecting the logistics of his travels to the point of his journey.  Such as he did on Day 4 - West Vancouver to Mission BC, traveling through the mountains in British Columbia.

We all need to be explored. It’s a tragedy that there are people on this planet whose speechlessly brilliant summit will never be discovered because the people around them don’t realize that the hike is worth it. Remember this: the hike is always worth it. Always assume ability, and listen with the patience, care, and effort that you would want anyone to listen to you. Often, the hike is the best part.

Even though I have friends whose young adult children are non-verbal, the world of AAC (augmentative and alternative communication) remains foreign to me.

And so it is that, as if through a lens, I follow Skye's blog and observe and learn and think more and more about what it must be like to have people assume you have nothing to say simply because you find it difficult to communicate or to have them walk away as you struggle to communicate because they don't realize that's what you're doing (or maybe they just don't care) - I mean, it's a busy, busy world we live in and I can only stand here and wait so long, you know.

Tick. Tock. Tick. Tock.

But today's blog post was written by his mother, Gail, and titled "Headwinds, Tailwinds, Lessons Learned" (* hence the title of this post).  It was these two paragraphs that really caught my attention - and made me reflect on our own life with the Blue Jay.

It is now a number of days after I originally began writing this blog entry. I’m sitting in the RV by the side of the road in Moosomin, Saskatchewan, waiting for Skye to appear on this windy, rainy afternoon. By the time he arrives, he will have pedaled 48 kilometres since we last met. The promised tailwinds that are supposed to assist Skye on his journey have been elusive. Tomorrow, they are supposed to blow tomorrow, just as yesterday, they were supposed to blow today. It’s a mental challenge, waiting for these helpful tailwinds, yet getting back on the bike to pedal in the face of more headwinds.

In so many ways, this is the story and the feel of Kerr’s [Ed. Sky's brother] life—the hope and promise of helpful tailwinds; the disappointment when instead he is met with headwinds: the funding that doesn’t come through, the education that doesn’t happen, the waiting lists that never seem to get shorter, the well-trained assistants that need to move on in their lives. How does Kerr—and how do we with him—get back on the bike and keep pedaling?

Headwinds and tailwinds, indeed ... that would be a good way to describe our current experience with attempting to help our now 18-year-old daughter master that transition from childhood to adulthood, which can be hard enough for any adolescent but so much more challenging when you're ... well, challenged.

I must admit that I have felt somewhat like a bull in a china shop of late as I struggle mightily, furiously (and yet often it seems in vain) to help her access the services she currently so desperately needs.  Transition planning and more work on life skills at school.  And counselling or meds (but why would you choose medication when you have a pretty good hunch that counselling would do the trick, if only she could access it?) in managing her emotions, letting go of obsessive thoughts and learning better social skills.

But she's too high-functioning.  And yet not high-functioning enough.  She is too old.  Or she doesn't qualify because she's mentally challenged.  Or she doesn't meet some other criteria for service to this or that group because ... fill in the blank. I've pretty much heard it all as of late.

And yet, despite the headwinds I seem to battle, on a daily basis, at every turn, every once in a while I will find myself screaming talking to the right professional, a person who can and does seem willing to make that extra effort to find the Blue Jay the help she needs.

Talk, of course, is cheap.  And the proof is (and always will be) in the pudding.

But when I somehow stumble upon those rare individuals who actually seem to hold out hope (of doing baseline testing and setting appropriate work and life goals at school or the elusive referral to the psychiatrist that specializes in adolescents with various challenges or ... is it really too good to be true ...the possibility of a way to access funding for one-on-one counseling), it's like suddenly coming around a bend during a seeminly never-ending uphill climb and unexpectedly finding the headwind you've been battling might just be gone.  And perhaps, just perhaps, the wind might actually be at your back for a change.

I'm hoping Skye will soon find those elusive tailwinds.  And that people will pay attention to his cross-country journey and, more importantly, the reason he is doing what he is doing.

At the same time, I hope this isn't just some trick or sleight of hand and my own headwinds are finally diminishing.  Wish us all luck. We will need it.

Creative Writing - Potential Op Ed Piece

UPDATE: This was published as an op ed piece in the Chronical Herald on May 19, 2011. Not quite the headline I was going for but we will take what we can get.

It's a good thing I'm not Ralph from The Honeymooners because I'm seriously tempted to threaten to send the Nova Scotia Department of Education "straight to the moon" at the moment.

First, the Department amends its Teacher Assistant Guidelines to eliminate any reference to supporting the teaching of students with special needs or providing "support for instructional program", leaving the only remaining job responsibilities of a TA as "personal care" and "safety/behaviour management support". If you don't have a child with special needs or aren't otherwise involved in the school system, that may not mean much to you. But if you do, it’s not hard to picture exactly what that bodes for the future.

Now, we learn that a review of the Province's public education system is calling for the Province to "consider reducing the number of teaching assistants in special education". Does anyone else see any connection here? Is this the beginning of the end of a proper education for our children?

The Province's newest Teacher Assistant Guidelines provide that "Teacher assistant support should be considered only when the student cannot perform prescribed outcomes independently, as determined by the program planning process" but I have to wonder how even those students will receive support when 1) supporting students who cannot meet prescribed outcomes (independently or not) is most definitely no longer part of a TA's job description and 2) the current recommendation is to cut back on the number of TAs when many would argue we don’t have enough to do the job now.

I find Mr. Levin’s concern about the number of students receiving special education services due to an increase in the "soft" areas of identification, like “students thought to have learning disabilities or behaviour problems” rather odd. If he had spent any time at all in Nova Scotia's schools he would know how difficult it is to obtain any special education services for such students. Students are not considered to have a learning disability simply because a parent or teacher thinks this may be so; services won’t be offered (if at all) until a student has been diagnosed by a qualified psychologist. And, given the wait times to be seen by a school psychologist, students can literally wait years for that type of assessment.

Why??

Deborah, Ashley's mom over at Pipecleaner Dreams, asked a most excellent question yesterday - Why?

Musing about group homes, day programs and school classrooms one of her daughters has and does know, she simply asks "Why?".

Why don’t people with disabilities deserve lightness, bright rooms, cheery kitchens and the occasional barbecue outside? Why can’t they assist in planting flowers and a vegetable garden at their group homes? Why can’t the draperies be opened more frequently and why can’t pleasant music be playing in the background rather than the constant din of the television?

How can we expect children with disabilities to be excited about going to school when the being there provides nothing visually stimulating? Do school districts think our students with disabilities will learn more if there is nothing but plain green walls to distract them? Why aren't there 'spirit' posters and announcements of school dances in the 'special education' hall? In fact, why is there even a 'special education' hall?

How can we expect our children with disabilities to learn and grow at their day support programs when they dread going there? Why can’t there be celebrations and joy in the places they spend the majority of their day - maybe ice cream sundaes and cupcakes with rainbow sprinkles? Why can't the staff smile more - do they really hate their jobs as much as their faces seem to say? Why must their lives be filled with darkness and gloom? Again, a little paint would go a long way to improving everyone’s moods.

Answers?

Anyone care to take a crack at it? Anyone at all?

After all, if it were typical children housed or educated in such conditions, parents would be screaming bloody murder, would they not? The community would quickly respond and whoever was operating the institution would likely be shamed into compliance. And, if not, their "customers" would soon be gone elsewhere.

And yet that's not the case here. Why not?

I have a few ideas - ideas formed from years of battles, negotiations and compromises with teachers, doctors and bureaucrats. Yes, a few ideas - and they're all quite sad if true.

My first thought is that, in large part, these situations continue because many people "think" that those who are challenged don't notice their surroundings that much anyway, so it doesn't really matter.

Actually, I doubt that many people even get that far in their thinking. Most people likely don't think about it at all. But for those that have no choice but to confront it (those that are perhaps forced into actually facing these conditions day in and day out as employees), I would not be surprised if, for many, that that is their thought process. Or, at least, what passes for a thought process.

Forget the research that shows how important the characteristics of the physical environment are to a child's learning. That only applies to children. Real children. Real people. Like you and me.

Do we really need research to tell us what we already know, to "prove" that which is really only common sense - that a mentally challenged person is first a person; that the physical environment is just as important for him or her as it is for you and I?

I also think that some people condone the present situation as a way to save "scarce" resources - why spend time and money on such things when it doesn't matter much anyway (see above)? And when there are so many other places that need repairing and updating - places where typical children are educated, for example.

The most guilty of all would be those who question why time and money should be spent in such places when they regard (whether consciously or unconsciously) the individuals who live, work or go to school there as "less than".

As in noticing less than others.

Needing less than others.

Deserving less than others.

And although the case might be made that this is not a condition confined to the disabled, that individuals in poorer communities or the aged, for example, often experience similar physical environments, I have to ask how that justifies any of it.

Is it really okay to treat any segment of the population (be it on the basis of ability, age, income or race) as less than, as being as entitled to less than what the community would accept for it's own children or other family members?

Is there ever any justification for any one of us, personally, to consider it acceptable for any segment of the population to be treated with any less care, compassion and consideration than that we would expect demand for our own family members?

How do you justify the unjustifiable?

Anybody?

A Good Day

I had a good day today, I did.

Went into the city early this morning to give a presentation on the issue of guardianship. I mentioned previously about working on a putting together a guardianship kit for parents interested in obtaining guardianship of their adult children with disabilities.

I'm pleased to say that the kit is almost complete. Almost ready for public consumption. Almost.

Too bad it's *almost* considering I no doubt could have sold a few today. Probably quite a few by the sound of it.

I was asked by HACL to give a presentation on guardianship. The room wasn't all that big so they capped registration at 45. And the room was full.

Took along a friend who had obtained guardianship of her son last year. With my help. Took along another friend who had also obtained guardianship of her son last year through Legal Aid. Met up with two other parents at the seminar who had obtained guardianship of their children yesterday. With my help. Yeah, I think I see a pattern developing here.

It was great to have the other parents there as they could speak first hand to my contention that this could be done without hiring a lawyer. Provided you had the right kind of help.

The session went well - I really enjoy doing this kind of thing.

The room was very appreciative; I repeatedly fielded the question of when exactly the kit would be done.

In fact, one of the parents who came up to speak to me at the end told me he thought I should leave now. So I could finish the kit. I told him I would kind of like to have lunch first. He was amenable to that but really wanted to know when it would be done. Two weeks? he asked. No, not two weeks. When then? Clearly getting that the man was not going to give it up, I told him one month. He seemed happy with that and went on his way.

Proceeded to lunch with my two friends. Not being in any hurry to get home, we took the ferry across the harbour and enjoyed a leisurely lunch with a nice view of the water.

It was a little bit like the The Three Musketeers Ride Again - once upon a time, many, many, many years ago, the three of us had formed a cross-disability parent support group locally. Interest waxed and waned (although we definitely did have some fun along the way) but the three of us were the core group, the Three Musketeers.

Moseyed back home, joined the family for supper.

And then headed out to the movies with one of my friends. Sent the kids to see The Last Song; my friend and I went to The Bounty Hunter.

The movie was a nice distraction, far from an outstanding movie but I've been having really bad luck with movies lately so ... yeah, this one was a nice end to a good day.

'All Aboard The Bus' - Some Troubling Thoughts

I put off blogging about this particular issue because, quite frankly, it troubles me. I had hoped that discussing the matter with others in the disability community and taking some time to mull it over myself might help to settle my thoughts, but to no avail.

It started when I stumbled across this story last week - I was completely unaware that Metro Transit had a history of offering blind and visually impaired passengers free passes on the Halifax buses.

Apparently they were about to pull the plug on the practice after receiving "informal complaints from disabled folks who said it wasn’t fair that one group was getting complimentary passes, but not others". Combine the complaints with the fact that some $420,000 in possible revenue was at stake and some feared the die was cast. End of the day, however, Halifax Council, for whatever reason, caved and the free bus passes for the visually impaired continues.

Here's my problem. I really am not sure on which side of this issue I sit, either legally or personally.

Legally, sec. 15(1) of the Charter prohibits discrimination on the basis of "physical or mental disability". So if free bus passes are given out to the blind but not, for example, to the mentally challenged, aren't those with intellectual disabilities being discriminated against?

And legally, is this really any different than allowing a blind person's support person to travel for free without having a similar policy for individuals with other disabilities?

Actually, despite how it may appear at first blush, I would answer probably not.

If a disabled person is unable to access a mode of public transportation (be it bus, aircraft or taxi) without the assistance of a support person, then to make that person pay two fares to access a system that the rest of the public can access by paying only one fare may well be discriminatory.

And if a public transit provider was to have in place a policy whereby they allowed individuals with one type of disability (ie. blindness) to have a support person travel for free but did not allow those with different disabilities (who also validly needed the services of a support person to access the mode of transit) to do so, I would say they were only helping to pound the nails into their own coffin.

But allowing one group of the disabled to travel for free (for whatever noble reasons),while it might be bad public relations in that it could conceivably really irritate and annoy others who are forced to pay full fare, doesn't strike me as being in the same ball pack, from a legal point of view. In my mind, it much more fits the definition of "discrimination", as has been fleshed out by the Supreme Court of Canada, to not offer free passes for anyone who needs a support person than it does to offer free passes only to the blind.

From a personal point of view, I am not much happier.

READ MORE

Cross-posted at A Primer on Special Needs and the Law

Unacceptable

The word barely covers it.

Obscene. Disgusting. Pathetic. At least they come somewhat closer.

That a funding skerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sadly, perhaps, not surprising.

But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.

For mother Crystal Hart, it means she may have to say good-bye to her daughter, Priscilla.

"I want her to get the services that she can get," she said while wiping tears from her eyes.

Priscilla Hart has Ritscher-Schinzel Syndrome. She can't speak or eat and needs to be fed through a tube. She requires constant care from a respite worker who looks after Priscilla when her parents go to work.

The Norway House Cree Nation has been paying for those services, which are required by 37 children on the reserve.

However, the band said the money has run out and the services will end May 31.

And this four years after another sick child, Jordan River Anderson, spent the entire five years of his young life in a Winnipeg hospital because when doctors were ready to release him to a medical foster home at age two, provincial and federal government officials argued over who should pay for it. They couldn't even decide who would cover the cost of a special shower head he needed, for heaven's sake. Jordan never left that hospital and eventually died in February, 2005.

But don't worry, they learned their lesson from that. Or so they would have us believe.

In December, Members of Parliament vowed never to let such a thing happen again and unanimously voted in favour of a private members motion providing that children should come first when it comes to funding disputes and "should receive the same level of service … as children with similar needs living in similar geographic locations". Because the politicians apparently needed just a little help to figure that one out."

Aptly called 'Jordan's Principle', it apparently still isn't working so well.

Despite a letter penned by Minister of Health Tony Clement in 2007 professing that "Indian and Northern Affairs Canada is working closely with Health Canada as well as provincial and First Nations partners to ensure that jurisdictional issues do not impact a child's quality of care" and despite the Premier of Manitoba declaring that his province would be the first to implement Jordan's Principle, les enfants terrible rage on.

In an interview with CTV News, Manitoba Health Minister Keri Irvin Ross said the provincial government is not required to pay for the children's care. "These issues are a federal responsibility," she said. "We need to make sure the federal government is held accountable for it, but we are committed to supporting this community and these children."

But not with any funding. Irvin Ross said the provincial government is offering its support by working with the Norway House Cree Nation in its negotiations with Ottawa. Irvin Ross said the fact that the provincial government is at the negotiating table is "new ground", and is a signal of its support for Jordan's Principle. She said the federal government has yet to respond to numerous letters requesting its involvement in finding a solution.

Perhaps it's time for some new election issues.

For example, where does the Nova Scotia government stand when it comes to Jordan's Principle? More mere lip service or is anyone really willing to put their money where their mouth is?

And as for Ottawa?
They should be ashamed of themselves. Utterly. Ashamed.

'You Can Call Them Your Friends or An Inspiration'

As much as the word "retard" does personally bother me (and believe me, it does), I must admit that I do rather think that this campain to "Ban The R Word" is a bit misguided.

But that being said, it's rather hard impossible to argue with the sentiments expressed in this video.



H/T to Pipecleaner Dreams

Point and Counterpoint

The blogosphere is abuzz with President Obama's comment, comparing his bowling ability to a Special Olympics level, on Jay Leno last night.

More noise than light, I rather think. As in everybody loves to use whatever ammo they can find for their own political purposes.

But I heard the comment on the show and at the time I actually thought I misheard. Quite frankly, I didn't think someone in his position could actually make such a 'stupid' mistake. And, in all honesty, being a black man I would have credited with a little more awareness around issues of discrimination and how hurtful the casual, unthinking use of language can be.

But he has 'fessed up and apologized. And even been challenged to a face off by a Special Olympian bowler.

And yet that's not what I really want to talk about.

Except to offer a counterpoint to this, Sarah Palin's video on the subject of the Special Olympics.




I don't care what your politics are (and no, I ain't no Republican, trust me), Palin could well and truly teach President Obama a thing or three on this topic. Perhaps she could offer him a course, gratis like, as a service to the rest of the country.

And lest we forget, best line ever:

What's the difference between a hockey mom and a Special Olympics hockey mom? Nothing.

You pegged that one, my dear. You pegged that one.

H/T to Take Five

The Final Word

Remember the furor around the blogosphere around the movie, Tropic Thunder? And the direct effects it had on some?

Apparently, the movie's current release on DVD, has restarted that whole conversation again. And although I still feel there is real concern that the reaction of the disability community might have given this sad attempt at a movie more play and interest than it deserved, I am happy to award the final word in the conversation to this young lady. She is affiliated with the ARC of Virginia, an organization which advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities.



What she said.

H/T to Pipecleaner Dreams