Every once in a while you get to be present when “what goes around comes around”. This week I was sent a link to this video about the perils of using pity, segregation and charity to raise money for organizations that serve people with disabilities. As my regular readers know-this is the major theme in most of the consulting, workshops and presentations that I have done around the world and, it was also a perspective that I integrated into my work as the former Executive Director of the Canadian Down Syndrome Society. Watch this video it’s worth the 15 minutes…it just might change your mind about how your organization raises money.

Lest you think I am above a little self promotion…check out the organization whose campaign is heralded as a bold departure from traditional charitable campaign. Huge shout out to the photographer responsible for most of the images used in this campaign Karee Davidson-see her work here www.conceptsphoto.com , and also to Andrew Brown Marketing and Communication wizard, whose courage and insight never fail to amaze me.

Think about your messages. Where do they fall on the pity, segregation, and charity meter?

The Toronto Star is reporting a disturbing story out of the Simcoe and Area District school board this month. Barrie North Collegiate Secondary school has adopted the practice of outfitting many of their staff with bright red, athletic, foam “blocker shields”, they say to protect both staff and students from  violent and unpredictable behaviour . “They’ll use them as a blocker to just block the aggressor. It is just to protect themselves for the moment until they defuse the situation,” said Silvanna Petersen, president of Ontario Public Service Employees Union, Local 330.

Ya I’ll bet.

Many parents and advocates including parent Susan Clough are outraged and say the foam blockers-with which students are often met coming off the buses in the morning, “are proof of ongoing systemic discrimination against her autistic son.”

And we thought the barriers between the gate keepers and those who have been made vulnerable within service delivery systems where merely metaphorical-not so much.

While school officials say these foam blockers are necessary in many cases, one has to wonder what would happen if the same resources were put into teaching professionals in the classrooms to use alternative methods to support students with challenging behaviours (behaviours which are some times the ONLY method of communication available for students without reliable and available communication tools.)

Mandatory Crisis Prevention Intervention training, protocols which ensure creative and innovative communication tools, and training in behaviour support that allows everyones dignity to remain in tact-would go along way to ensure that students with disabilities would be spared the blatant identification and ostracizing created by these bright red blockers.

A yellow star, separate drinking fountains, or an id number tattooed on your wrist…all symptoms of the same devastating disease. Ignorance, fear, and bias.

You see hate has to be carefully taught…or demonstrated in this case.

The problem is folks when the only tool you have is a hammer-everything begins to look like a nail.

Photo credit-Toronto Star Newspaper

Cosmos Industries to Lose Recycling Contract

This just out of Saskatoon Saskatchewan Canada this morning. Saskatoon has long been home to one of the largest sheltered workshops in our Nation. Cosmo Industries first recieved national coverage for it’s discriminatory practice of paying participants with developmental disabilities less than minimum wage, and more over, less then their non-disabled co-workers for doing the same recycling job on the “line” in their workshop which is a day program for over 400 citizens with disabilities. Those of you who are regular readers of Inclusive Humanity’s web page may remember two posts written about Cosmo Industries. The first before I visited them, the second after being invited to spend an entire day at their institution. (see links to previous articles). Today the Star Phoenix announced that Cosmopolitan Industries tender for curb side recycling is not being considered by the city, in favour of Loraas Recycling.

Cosmos’s Manger of Community Relations Ken Gryschuk had plenty to say on the subject, calling it a “reversal of over 3 decades of progress for adults with developmental disabilities”. He is also quoted as saying this decision will “effectively marginalize them”. It seems to me that Mr. Gryschuk needs a re-fresher course in what marginalization means.

Oh sure, there will be the usual outcry from the pity pedlars who will bemoan the loss of a “work-like, special place, for THOSE people to go to during the day”. But before the hysteria ensues, lets consider the other activities Cosmo Industries could and should be facilitating. They could invest in training their staff members to support participants to become connected in meaningful and authentic ways to their home communities, through real work for real pay (I know lots of people don’t believe that EVERYONE CAN WORK-although countless academic studies and practical models of accommodation and inclusion will prove you wrong), or through volunteer opportunities, faith based communities, leisure and career development.

As with the last two posts I wrote about Cosmo industries there stands an open invitation from Inclusive Humanity to provide whatever support, facilitation, or training this organization might need in order to make this transition-we sure don’t have all the answers but we do so love working through the questions.

The world is changing…segregation, objectification, exploitation, (even under the auspices of charity or benevolence) are the harbingers of isolation, loneliness and the disintegration of justice. Lets build something wonderful on the foundation of what was cutting edge and innovative 40 years ago.

Lets build something that helps people create real, human and fulfilling lives.

Call me!

For information on Keynote or Plenary addresses, consulting, lectures and workshops by Inclusive Humanity see our consulting page or contact us for information and rates.

A Response to Global Canada’s 16:9 Documentary “Taking Mercy”

There are a few things that we know to be true, things that must happen in order for us to cling to the routine and interconnectedness of this life. The things that make us human and real to each other, I must recognize some part of myself in you in order to bring you authentically into my experience. I must see the place in the universe you occupy, your value, your contribution and your unique humanness.

Unfortunately the documentary “Taking Mercy” has made many Canadians question this universal truth. So terrifying is the public opinion expressed in this piece, those of us who believe that Inclusion, Social Justice, and Diversity only strengthen, fortify and enhance our community, can (and will) use it as a rallying point in order to work harder and longer together to change peoples minds.

Parents love their children; give of themselves, their organs, fortunes, and too many sleepless nights to count in order to ensure their well being. We know this to be true. There is no qualifier to this truth; it contains no caveat as to the qualities their children must exemplify in order for this love to exist. They only need to be in the world, to be connected to us by blood or by purposeful intention. They need not even be our own children for them to solicit this love; they need only to powerfully occupy an imperative place in the universe.

The 16/9 documentary and live blog discussion Taking Mercy, served as only the latest and perhaps the most deeply cutting assault endured by citizens living with disabilities in Canada.

Suffering is what happens when the powerful and purposeful lives of citizens with disabilities are relegated to trite and hate proliferating comments likening their existence to those of animals, acts of burden, and inaccurate stereotypes.

Where were the voices of citizens living with significant disabilities, or of their families who love them and fight daily for their well being in the documentary and live blog? Would that the moderators only have included more comments from self-advocates and family members who deeply love and cherish their children who also have disabilities. They lengths that self-advocates need to go to in order access and participate in community in a meaningful way would be a story for the ages. It would certainly illustrate the depth and breadth of love and reciprocal relationships at play in the lives of Canadians with disabilities and advocates who see accommodation, and inclusion as better responses to pain, isolation and vulnerability.

Nothing bad can come from opening up a broader public discourse- an additional piece is an excellent idea and would go along way to creating a positive dialogue with the disability community.

A powerful self-advocate once told me that there has to be a safe place between both sides of dissent or neither side will ever venture into the abyss. I’m afraid that in the documentary “Mercy” the entire space was filled with, misinformation, fear, stigma and a sense that people with disabilities are somehow subhuman.

So many of the live-blog comments about pet suffering re-enforces the notion that public opinion is so neatly stacked against citizens with disabilities that we must relegates them to the same quality of life attributes of animals.

Have you any idea how dangerous this makes life for people, who have already been made vulnerable by a medical scarcity paradigm?

This piece of biased documentary reporting was a searing affront to self-advocates who require support with many aspects of daily living, and who live with chronic pain. So damning was the positioning of this piece it, that it actually sought to characterize convicted murderer Robert Latimer as some kind of vigilante hero?

It seems as though Global Canada ought to consider airing a more fulsome piece, something that might feature citizens with disabilities and their families’ position on pain, medical futility, eugenics, and the “slippery slope of mercy”.

It’s a painful reminder of the ongoing history of abuse of citizens with disabilities in this country to see any contextualization of Robert Latimer as an expert.

As a Mother of three, (none of who currently have the label of disabled) I believe firmly that the world I want my children to inherit will be richer, more vibrant and healthful if it includes citizens with all kinds of disabilities.

Furthering the misinformation is the general public’s lack of awareness regarding the advancements made in pain control, and the systemic marginalization of citizens with disabilities. The euthanasia of children with disabilities really is the most horrific and disastrous end point of this marginalization.

With hope for peace and equity and retribution,

Krista J. Flint
Chief Storyteller
Inclusive Humanity
www.inclusivehumanity.com

Those of us at Inclusive Humanity really struggled as to whether or not to share this piece. However we remain committed to the notion that in order to change the way the general public thinks about the value and contributions people with disabilities have to make to the community, we must be honest with ourselves about what many people who don’t know or love someone with a disability thinks about the notion of “suffering as it relates to disabilities”.

See Global News posts misinformed and narrow-minded piece entitled “Taking Mercy”.

To be clear we see this piece as hate propaganda.

However we desperately need to understand the significant public misinformation we are battling against. Ever wonder how our messaging effects the public perception? Need to see where benevolence, segregation, and the vulerability of being defined by labels and service delivery lands you? Here is it folks in all it’s pity, charity and ugliness.

Try to create some love and understanding today will you?

The Role of Organizations

Organizations that serve vulnerable people have a tremendous amount of power and responsibility resonating in peoples lives, to be mindful of that consider the following- Impact, Scale and Durability.

Does the organizations efforts, initiatives and programs have the desired Impact on your constituency-are you making a difference in peoples lives?. Is it changing things on a Scale that acknowledgers the imperative and timely contributions of the citizens you serve? And finally, Durability, if the funding fell out of your organization tomorrow would you have spent your resources building initiatives that have the potential to be taken over by community and could live among the other natural and organic ways of neighbourhood life?

Seems to me if what you are doing today, right now, doesn’t live up to these three manifestations of accountability you should probably back up and re-evaluate your efforts.

The whole point to all of us working so hard to get fair and balanced information on Down syndrome (and other prenatally determined conditions) into the hands of women and prospective families, is so that they are no longer given the “death sentence monologue” from medical practitioners in the prenatal setting.

We want them to know not just about the challenges of a life with Down syndrome but also the richly rewarding lives that are possible and probable these days for citizens with Down syndrome. We want them to talk to other families who have had their home life enriched and made more satisfying and loving by including a child with Down syndrome.

As we speak States in the USA like Arizona and Kansas are considering Bills that would protect doctors who deliberately withhold information from women in the prenatal setting. It’s being done under the auspices of decreasing or eliminating wrongful birth suits.

Wrongful birth suits are distasteful and discriminatory for a myriad of reasons, not he least of which is how they have the potential to strip people living with prenatally determined conditions of their liberty and humanness in a way that makes them other-worldly. But making it legal for doctors to withhold information from women is not the right way to go about ensuring justice and equity for people.

This is a fools journey folks. In fact Bills like this have the potential to make us lose our way in a dense and dark forrest of polarizing issues, political partisanship and absolute control.

We can not advocate for the rights of one marginalized group of citizens at the expense of another. It doesn’t work that way.

The Canadian contingency fought long and hard at the United Nations during the drafting of the Convention on the Rights of the Disabled to ensure it included articles that would ensure that men and women with disabilities would have access to equal and quality to reproductive health services, (UN Article 25 sub-section A). Thankfully it’s part of the convention.

Lets work harder on getting accurate and timely information to women so that they make make the best decisions possible for themselves and their families.
We don’t need the tunnel vision that makes us smug enough to think that by making it legal to withhold critical information from women that we can control their decision making process.

We know that that with fair balanced and timely information, widely and fairly distributed I am less likely to have to worry about my grandchildren never getting to know people with Down syndrome.

You can’t advocate for peace while holding a gun.

We don’t want to lose our not lose our way at this critical juncture. There are plenty of groups more than excited to co-opt our messaging.

Lets ensure that women with disabilities and without, have their rights upheld as laid out in the United Nations Convention.

Charlie (my 8-year-old) came home school today with a deflated spirit. When his Grandma and I both asked him what was troubling him, we got the standard “Nothing Mommy, it’s okay Mommy”.

You see Charlie has apraxia which has resulted in some pretty significant speech and language delays-when he was younger, and would become frustrated at folks for not understanding him he would just mumble…”noffing, nevermine”

Because of his super teachers and a well crafted collaborative IEP (Individualized Educational PLan) for the most part we are passed that. I still worry though. Charlie is kind of a quiet introverted kid by nature and I never want his needs to go unmet because of his reserved personality.

Today he told us what was bothering him. His best friend Oliver had returned to school during the lunch hour today, after being away due to illness. They hugged and were busy chatting over their boxed, sent-from-home lunches. Suddenly a lunch time supervisor placed her hand on the back of Charlie’s neck, held on and forced his face into his lunch box, telling hime to “Shut their mouthes”. Now I know kids exaggerate, and I really love our little community school. So I called Oliver’s Mom to find out if she had heard the same story – sure enough, Oliver re-counted the same circumstances.

I called the school of course, spoke to the principal, and I have every confidence this supervisors behaviour will be addressed appropriately, and you can bet I’ll be following up.

But here is the rub. Charlie talks, Oliver talks, all the kids in the crowded lunch room talk. What about our children who attend schools, live in service delivery systems, group homes, institutions, and in segregated settings who don’t talk in a way that is easy to understand.

Sadly and coincidently I received the following link to the latest in what has become an on-going threat of tyranny and abuse in paid service delivery.

Hold your babies tighter tonight and offer up a prayer, meditation, or positive karma for the people who float through this life unconnected to the real world, for those whose lives are defined by service delivery and for those who are most in need of protection.

Isn’t there an old sports adage that goes something like “the best defence is a good offence”?

I assert we need to adopt this strategy with our advocacy and awareness raising in Canada as we face the impending arrival of prenatal screening in Canada.

I’m so pleased to be a member of the CACL Values and Ethics Task Force, their leadership, and partnership with People First of Canada (in a time when leadership is hard to come by on this sensitive and divergent issue) has made me proud to be Canadian.

We have had the opportunity to see into the looking glass, watch the use of these tests spread across the US, and the uptake on their use increase. We have watched (largely in silent horror) as the new prenatal screening tests for Down syndrome (Trisomy 21) as well as Trisomy 18 and 13 (Edwards and Patau syndrome) and the potential to eliminate some 64 other prenatally determined conditions (which science speculates will be detectable sooner rather than latter )capture the imagination of medicine and popular culture because we think we may be able to create a human family which no longer includes, what the public perceives as “the horrible suffering of enduring a disability”.

In my meetings with the SOGC (Society of Obstetricians and Gynaecologists), I had the opportunity to review an embargoed copy of their draft position statement on these new testing technologies. While largely unclear on who will pay for the tests and who will be STRONGLY encouraged to avail themselves of the technology…the writing is on the wall.

Here is what I would like…Instead of playing our usual-appalled and outraged card AFTER the tests have been cleared for Canadian use, and AFTER the medical associations have toolled and tinkered with the language in their guidelines to make it bland enough in order to lull the Canadian public into thinking these tests make the world somehow more sterile, safe, and less “broken”…

Lets do something

Lets meet with these organizations, professional medical groups, and societies.

Lets devote our conferences, committee’s and task forces to these discussions.

Lets talk no more of  TV stars, special segregated places, sports or classrooms.

Lets support Self Advocacy organizations to develop position papers and to talk about the impact this culling of the human family has had on their experience in the world.

Lets own the discussion.

Lets take it away from those who would use the prenatal elimination of disability in the world to further their own private and justice denying agendas.

Lets talk about the right to fair, accurate, balanced and timely information for women in Canada

I am travelling to Washington DC for the DSAIA (Down Syndrome Affiliates in Action) conference Wednesday to make two presentations to the majority of Down Syndrome groups in the US.

I will be privileged to watch and learn from their “March on Washington” when hundreds of local representatives from disability groups in the US will meet with their State designates, governors, and senators on Capital Hill regarding the legal and ethical protection under the law that women and people with disabilities deserve as it relates to prenatal screening.

I will share with them the momentum gained by People First of Canada, CACL and like-minded organizations on the closing of institutions, of these organizations that are brave, strong and willing enough to devote resources, for conferences which will address -square on-these issues.

Let’s do it.

Lets keep doing it now, before it’s too late, before the die has been cast.

I’m all for a good news story.

Trust me I have been using every search engine, meta tag, and google alert I use to find one. Unfortunately this story (even if this sounds like one on first blush) IT IS NOT.

Part of being a writer, advocate and human rights supporter, is being able to suss out what LOOKS good from what IS good.

Thus today I bring you the story of a fabled, and beloved football player whose idea of supporting the community of people with disabilities is to build (yet another) segregated, non-inclusive building where people with disabilities can languish while they learn the skills which will ultimately make them less disabled and easier to include.

According to the Phinsider, (a sports news outlet) Dan Marino and his foundation have plans to open a special needs college of sorts.

Marino’s son Michael was diagnosed with Autism when he was two years old. Since that time the Marino Foundation has focused on raising money to support worthwhile disability services and supports.

This is where the wheels fall off.

“The college would be located on the 400 block of North Andrews Avenue, and would utilize nearby apartments for students. The enrollment would cater to students from age 18 to 28, all of whom are diagnosed with autism, Asperger’s syndrome, Down syndrome, or other developmental disabilities. The school is aiming to open in the fall of 2013, with a student body of around 60 for the first semester. The school anticipates an annual tuition of around $7500 for the two-year program, and would be divided into trimesters.”

Let me see if I understand. This foundation aspires to build a segregated school where young men and women (who have already spent up to 17 years in the school system) can both live and be educated until they reach 28 years within a “college-like” setting exclusively with other people with disabilities.

Okay I’m going to have to throw a flag on this particular play.

Here’s an idea Mr. Marino, why not spend some of the foundations resources on enhancing the programatic supports that exist at lots of different University and College campuses, legitimate educational institutions that recognize how much richer their academic and campus life are because the inclusion of students with disabilities.

This is one more example on how we seem to continue to be bound and determined to delay and deny the inclusion of citizens into into real community.
I’m sure this facility will look like a college, and function like a school. But scratch the service and I’ll bet dollars to footballs that you will find “can stacking” and “life skills”, on the curriculum.

Please Mr. Marino, don’t open another segregated, day program, and residence. Dream bigger for your son and all of our sons and daughters.

Invest in what gives people with disabilities a REAL LIFE, that being access and supports to have a REAL LIFE, in our community, schools, and workplaces.

Harder to put a plaque on definitely, but abundantly more meaningful.