Is Diversity, Equity and Inclusion for the Down Syndrome Community just about having representation

Inclusion is a word we hear quite a bit in the DS Community. Usually parents and leaders are talking about a student with Down syndrome being fully included in the general education setting; sometimes we are talking about those same kinds of opportunities with typical people in the community at large. Either way, inclusion—whether we have embraced inclusion personally in those settings or not—is a word and concept with which we are familiar.

Recently I was in a workshop on just this topic and one of the participants asked a question. Looking around the room at other DS Community leaders, he asked the group: how many of you have a board member who is a person with Down syndrome? About half of the attendees raised their hands. His response was: “Oh, we’re doing good then!”

But as a community and nonprofit focused on individuals with Down syndrome, is that enough?

From the looks around the workshop room, this participant wasn’t getting the concept of diversity and inclusion as it related to race, culture, gender identity, religion, language, age, etc. And perhaps, he wasn’t getting it even in terms of including a self-advocate on the board if the only measurement for effectiveness was “Do We Or Don’t We?”

From research by the BoardSource 2017 National Index on Nonprofit Board Practices as well as reportings from Blue Avocado: A Magazine of the Nonprofits Insurance Alliance Group, nonprofit executives consider diversity of all kinds important to their organizations because it leads to: • Broader perspective • Deeper understanding of constituents • Insightful solutions to problems • More effective planning • Enhance public standing • Stronger outcomes/stronger fundraising

And studies from the corporate world tell us the same thing: diverse teams feel less comfortable — and that’s why they perform better, according to a 2016 Harvard Business Review. Specific findings included: • Diverse racial and ethnic compositions are associated with higher and more effective levels of advocacy • Mixed-gender boards have fewer instances of fraud • Diverse teams are more likely to recognize risk factors

So let’s ask that question again: as a community and nonprofit focused on individuals with Down syndrome, is that enough? Is your organization doing enough? The answer is a resounding “no.” Having an individual serving on a board of directors is not enough. As leaders focused on the rights and inclusion of people with Down syndrome, we need to also focus on the inclusion of all people at our tables, both in terms of our leadership and in terms of who and how we serve.

There are no easy answers on how to do this well, but here’s an idea to just get your organization started: add diversity to your next board agenda. By starting the conversation, you will be well on your way to making diversity, inclusion and equity for everyone an intentional and overt part of your organization’s mission. Another great resource are the diversity materials in the member resources at Down Syndrome Affiliates in Action.