This guest blog series on the history of Down Syndrome Affiliates in Action was written and compiled with input from numerous past DSAIA board members.
First, I want to start by using that famous phrase: "If I have seen further it is by standing on the shoulders of Giants.” [FYI that phrase originated with Bernard of Chartres and then more plainly by Sir Isaac Newton.]
So, if you are a parent of a child with Down syndrome and see a bright future for him or her, it’s because you have a great vantage point. You truly stand on the shoulders of those who came before you in the disability/advocacy community.
But many members of Down Syndrome Affiliates In Action (DSAIA) might not know OUR history, the history of the organization. I think it is important to know how our trade association, the only organization whose consumers are local and regional Down syndrome (DS) organizations, began. The organization was born because of a conference that was the idea of some shoulders upon which we now stand.
I had been part of the Down syndrome world since 1991 and been a bit confused by the two national American organizations that existed then. And I wasn’t there in person but I heard a lot about the Canadian Down Syndrome Society’s national convention in the summer of 2006. There were about a dozen “Americans” walking to dinner that included the executive director of the Down Syndrome Guild of Greater Kansas City (DSGKC) who shared with the others her idea for a conference specifically for local Down syndrome organizations and their leaders: staff and board to all get together to share ideas regarding programming, fund raising, development, etc.
A few months later I was intrigued when I received my invitation and remember telling my only other staff member: “Let’s give this a try and see what comes out of it.” I wasn’t holding out much hope that it would be a benefit to us as leaders of a local group.
Fast forward to February 2007. With the vision of the executive director and the board president of DSG and their board’s support, DSG hosted the first Affiliates in Action (AIA) conference in Kansas City.
We had 63 attendees. It was bitterly cold, especially for this Floridian.
At that small conference, I met several people who, over 12 years later, I consider tremendous friends. But more than the friendship was the bond that began at AIA from what we learned and shared with each other.
For many, including me, the AIA conference was nirvana.
DSG organized it so well. There were a few mini-breakout sessions covering specific topics, there were round-table discussions that forced attendees to move and meet people they didn’t know, there was a room where every organization was encouraged to share printed copies or flyers of their programs, by-laws, development ideas, Buddy Walk materials (and yes, in 2007, there was only Buddy Walk), and more. That was tremendous. Collectively, I think the contributors to the info-table spent $500 or more at the local copy shop because absolutely no one brought enough materials to share. There was also just enough time allowed to go find the people who brought material you wanted to know more about.
In 2007, I’d been to dozens of national DS conventions (both NDSS and NDSC held them every year back then), but AIA was something different. Something special. I was not there as a parent of a child with Down syndrome, I was there as a leader in my local DS organization. THAT was the focus. THAT was the difference…and what a difference it was.
In the general roundtable discussions, many common pains that local/regional organizations faced were discussed. One was the lack of an awareness campaign that could be shared by all DSA’s.
One of the attendees was David Forney, a National Down Syndrome Congress (NDSC) vice president. He heard us. He took notes. He asked questions. David was also in the right business professionally. Our collective voices were heard, and there was—gasp—action.
Five months later, at the annual NDSC Convention (also held in Kansas City that year), with David’s imagination and leadership, the “More Alike Than Different” campaign was launched. I know see this phrase thrown around so casually by new parents who have no idea that it was created thoughtfully and intentionally based on feedback from leaders of DSAs from all around the country. What a testament to collaboration! [Want to read what David Forney is thinking about these days? Check out his guest blog for us here]
I remember frank conversations with staff and board members as well as my new friends. We each had gone to Kansas City thinking OUR local DSA was perfect and a trail blazer. We flew home realizing we were bringing back MUCH more than we contributed. And I’m confident that every other one of those 60+ attendees felt the same.
What DSG’s executive director, board president, and leadership realized when they organized this small conference was that each local or regional DSA was building their own wheel, program by program, fundraising idea by fundraising idea, board development plan, etc. There was not a platform to share what you know and to learn what you don’t for DS group leaders. Not until February 2007 in Kansas City. Prior, there was not a meeting specifically for Down syndrome LEADERSHIP.
Once there was, the 60-some of us demanded more. And DSG didn’t let us down.
In the next installments to be shared Jan. 1, 2020, I’ll share more about the history of DSAIA involving the next few AIA conferences. (A committee was formed that included leadership from around the country.)
I’ll end this post where I began. We stand on the shoulders of those who came before us. And credit for this historical series of blog posts goes to many of those giants—they know who they are. If today, your organization has benefited from the products, services, training and mission of DSAIA, acknowledge and respect our shared history. As a community of DS leadership, we are all grateful to the visionaries who saw the need and worked to address it.