A Galaxy Far or Not So Far Away

Sun, November 03, 2019 1:38 PM | Anonymous member

This guest blog was expertly written by Jawanda Mast, who is also known as The Sassy Southern Gal and is an independent contractor specializing in inclusion and grassroots advocacy.

My daughter Rachel was born with Down syndrome just over 20 years ago. I tell people that you blink once, and your child is 6 and you blink twice, and he/she is 18 and graduating from high school. As I reflect on how fast time seems to fly these days, I can’t help but think of my early involvement in the larger Down syndrome community.

Twenty years is not that long ago, but in those twenty years, the world and certainly the landscape in the Down syndrome community has changed at warp speed. When Rachel was born, I didn’t even know we had a local Down syndrome organization. The Internet was new and finding up-to-date information, organizations, and resources via cyberspace was not easy. Social media had not been born yet. That was still the stuff of science fiction you’d see in Star Trek or Star Wars. It was not a common occurrence to send things electronically or even have materials available electronically. Sharing resources usually required face-to-face meetings, a fax machine, or the US Mail service.

When Rachel was a toddler, I began working alongside an amazing group of people in the greater Memphis area. A small group of parents had started a Buddy Walk ® to try to build an organization serving individuals with Down syndrome and their families across the life span. Like many groups around the country, I soon found myself in leadership both for the walk and the organization.

I, and really everyone in our local group, was always eager to learn about what other groups were doing. There were many Down syndrome organizations who had been around for years and years. There were groups doing great programs. I signed up for newsletters from groups all over the country. When I went to conferences, if there was an opportunity to meet leadership from other groups, I made sure to try to meet staff and board members. Our group was doing a good job with some things such as our Buddy Walk ®, and I was always happy to share with others, too.

But there was nothing truly focused on helping affiliates learn best practices or share information in an organized fashion. It was basically an “every man for himself” mentality. As a result of the Buddy Walk ® program, many local organizations were successfully raising funds for their local organization. Having funds is a good thing, but many groups had no structure, no by-laws, no idea about legal requirements, and had limited information on best practices. Many, if not most, groups were almost entirely volunteer driven. There was limited time to find out how to be an “affiliate” and make a maximum impact. There was truly a sense that many people and groups were holding on by a thread.

Enter Affiliates in Action (AIA). I remember receiving an email about this “AIA” thing happening in Kansas City. I had just been hired as the first paid staff for the Down Syndrome Association of Memphis and the Mid-South. I shared the information with our Board, and they agreed to send our Buddy Walk ® Chair and me to the conference. There were 63 people (board, staff and volunteers) at that first event. It was bitter cold in Kansas City and when I arrived, I didn’t know many of them.

When I left, I felt like I had been a part of something that was going to be a game-changer. I was right. That weekend was the beginning of what is now Down Syndrome Affiliates in Action (DSAIA). And Down syndrome community leaders were boldly going where no one had gone before.

Just like DSAIA is today, in those early years, we were able to learn about best practices and programs that we took home and replicated in the Memphis area. We also developed deep friendships with others who were experiencing some of our same challenges. In addition to being able to learn and borrow from others, we had the opportunity to share with others. I led or co-led workshops on volunteer recruitment, building walk teams, fundraising and incorporating advocacy into your walk. Now, twelve years later, I still get a call or an email from time to time asking for information from one of those presentations. For me and our group, it was motivating and refreshing to get to know other leaders. Instead of re-creating the wheel, we found ideas and toolkits for programs and practical solutions to challenging situations. Personally, I found a great sense of fulfillment in sharing with others and being a part of something that made a meaningful impact on our local community, but also made a lasting impact on communities around the country, the larger Down syndrome community.

For those who have only been around during this age of social media and warp-speed technology, I think it may be hard to imagine the significant impact Down Syndrome Affiliates in Action has had on the larger Down syndrome community. I commend the Down Syndrome Guild of Greater Kansas City for their vision and leadership in hosting that game-changing weekend back in 2007. I appreciate the many people from around the country who have invested their time, resources and passion to build DSAIA. DSAIA has definitely been one of the top game-changers in the Down syndrome community. I am proud, honored and humbled to have played a small part. More importantly, I will steal one of my daughter Rachel’s signature sayings: The impact DSAIA continues to have on the larger Down syndrome community “makes my heart happy.”

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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