Consumer Driven... Consumer Directed...

By Raymond D. Cohen

"Consumer driven...consumer directed...consumer managed..." What’s all this about, anyway? I’ve made no secret of my stance regarding the fact that people with disabilities are just people...with disabilities -- that within this group is the same representation of turkeys and nice guys, morons and geniuses, saints and sinners, as within any other segment of the population. And I subscribe to the notion that we are all either people with disabilities or temporarily able-bodied -- ’cause, given the passage of enough time, we all have disabilities to reckon with.

So when governments and organizations started to stipulate that groups requesting funding must be "consumer driven, controlled or directed," I took exception. I figured that being human was licence enough to work in any area of human endeavour: social services, politics, organizational development, medicine, publishing -- whatever.

I still feel this way -- but with a twist. While, in my view, any human, given the right combination of skills and energy, should be able to undertake any effort, I feel that the primary stakeholders should have priority say -- that is, people with disabilities should have the loudest voice in circumstances affecting people with disabilities. Not exclusively, just most important...

So how come the disability field is so generously sprinkled with temporarily able-bodied types? Where is the stakeholder leadership? Sure, there are dynamic consumer-driven organizations out there, organizations like the Canadian Association of Independent Living Centres, People First and the newly dubbed Council of Canadians with Disabilities (congratulations on the name change!), but my guess is that these organizations would join me in asserting that their memberships constitute only the tip of the iceberg. In a country where roughly 15% of the population has one form or another of disability, in a country where 4.2 million Canadian stakeholders should be prepared to lend a hand -- where is the leadership?

I was impressed with a letter which came across my desk last week from the National Easter Seal Society in the U.S. It seems that organization decided to raise some very basic questions regarding leadership and disability: How many people with disabilities are elected or appointed officials nationwide? To what extent and in what ways are people with disabilities involved in their communities? Is their involvement in disability issues or other community activities?

The letter, signed by Sandra Gordon, Senior Vice President of Corporate Communications, went on to say that after posing these questions through disability media, an overwhelming response was received. Across the U.S., nearly 1,000 people came forward to tell of their involvement "...in community activities ranging from sports to scouting, from environmental advocacy to accessibility activism."

Thus was born the Disability Leadership Forum (along with a national directory of the same name). What a great idea! And I daresay this country, Canada, must also have its share of leaders with disabilities, people so caught up in their roles in government, business, community work and every other branch of human endeavour that they may well have barely enough time to identify themselves as "stakeholders" in disability issues. But (c’mere, I want to tell you something...) you are needed! Your strength, expertise and perspective are necessary to the healthy functioning of many consumer-based organizations -- and even more organizations that are not, as of yet, consumer driven, managed or run.

We at ABILITIES want you to come out and play. This is my invitation to you to identify yourself (or squeal on a friend!) as being somebody with a disability who is doing things right out there, excelling in a field, showing leadership in any area. Write to us and mark the envelope "Leadership Survey."

Let’s see how the Canadian response is. Hey, maybe we’ll start our own Disability Leadership Forum -- or maybe we’ll simply link you with people who can use a little advice or support in an area where you have that to offer. But the first step is to count heads -- where is the stakeholder leadership in Canada?

OUR COVER:
This has been a difficult and tragic couple of months in the world of downhill skiing. First, the Austrian Ski Team lost Ulrke Maier at the downhill races in Garmisch, Germany. And then, as this issue of ABILITIES was nearing completion, 20-year-old Scott Connery of the National Disabled Ski Team died in a devastating ski accident in Alberta just weeks before he was to head for this year’s Paralympics in Norway. The cover of this issue is a tribute to this young man, and our deepest sympathies go out to Scott’s family, friends and teammates.

Scott’s excellence in skiing, along with a portrayal of all of the Canadian Paralympic Team members, is profiled in "Oh Say, Can You Ski!" on page 4.