According to the National Down Syndrome Society (NDSS), October has been National Down Syndrome Awareness Month( DSAM) since the 1980s. The Society describes October as “a month to raise awareness and celebrate the many abilities of our loved ones with Down syndrome. DSAM seeks to break down barriers and focus on promoting advocacy for people with Down syndrome.”
At Families as Allies, we appreciate the Mississippi families of children with Down Syndrome who are taking this conversation to the next level and promoting Down Syndrome acceptance. In May of 2023, we shared our thoughts on how disability awareness and acceptance differ:
- Awareness is often a one-time event (for example, holding a rally to build “awareness” or reading a list of symptoms). Acceptance is ongoing – what do we all need to do so that everyone is accepted?
- Awareness often focuses on what other people think the individual with the identified condition needs to do (realize they have a problem, get over their “stigma” about treatment, seek out the services others think will help). Acceptance focuses on examining our own beliefs and prejudices and how they are standing in the way of helping develop the kind of support that people say they want.
- Awareness sometimes focuses on activities, such as wearing ribbons and listening to heart-wrenching stories, that make people feel touched and involved but don’t bring about real change. Acceptance creates pathways for everyone to work together to improve systems and policies so that real change can occur.
- Awareness can focus on symptoms and what is “wrong.” Acceptance focuses on real people, recognizing their strengths, complexities and individuality. Acceptance doesn’t assume that a difference is a weakness and allows people to decide if they want support and what kind of support would be most helpful to them.
- Awareness efforts are sometimes created and implemented by people without lived experience with the conditions and sometimes without even getting the input of those with lived experience. True acceptance grows out of efforts that people lead with lived experience.
We’ve learned much from the Mississippi families working on Down Syndrome acceptance. Their work brings home the importance of acceptance and how crucial it is that people without disabilities change their actions in response to understanding what acceptance means.
In July 2021, Florance Bass wrote a thoughtful guest blog about inclusion that points to how vital acceptance is. She wrote:
“The priority to include these children within our communities is absent. We fail to see the contribution of every person. As adults, too often we are not proactive to ensure these children be included in the same activities as typical children. Look around the community. Do you see many developmentally or intellectually delayed children on the athletic fields playing with the typically developing children, especially for younger ages? Go to a Sunday School class on Sunday and observe. For most churches, the classes are mostly typical kids and occasionally a child with some type of disability. Some of the larger churches that have a class specifically to accommodate disabilities assume immediately that all children with any type of disability belong in a separate special needs class.”
We encourage you to read her entire blog and check out the Facebook group, Mississippi Down Syndrome Advocacy Coalition, which she and other parents of children with Down Syndrome started.
