There are different factions within the Down syndrome community. We try not to admit it; but for all our talk about inclusion we can be downright vicious in segregating ourselves from “the others” within what should be a large, powerful community for support and change.
There are several battles being raged among us including (but not limited to):
Young vs Old
High functioning vs Low functioning
White vs Color
Poverty vs Middle/Upper class
Special education vs Inclusion only
Sheltered vs Competitive employment
Global vs NDSS vs NDSC
Ds centric vs Intellectual/Developmental Disability Inclusive
“Inspiration porn” vs Reality
Pre-natal testing (Anti-abortionist vs Choice)
If we could accept each other’s perspectives not only would we better people, we would be a powerful political force. Imagine the changes we could champion more effectively: healthcare, employment, research, education, and housing, to name a few.
Instead of working against each other, it should go without saying, we should be working together.
So why is it that we can agree that the world would be a better place if everyone could accept our children for who they are, but we can’t accept each other?
Together we could do so much – Helen Keller #321Proud #TRoadWS
When groundbreaking television finally allowed the world to get an inside view of our community, what did we do? Did we celebrate together? Yes and no – we also created battle lines. Many families couldn’t or chose not to watch Born This Way because they felt that their children were not represented. While these feelings are valid, they’re not an excuse for bad behavior. People used social media to make insults and insinuations: i.e. all the stars were “high functioning” and the entire program was scripted. After four short seasons the show has been cancelled. Imagine if our entire community tuned in. The writers and producers could have, given more time, added more people. Instead of putting our full support behind something so transformative, half the community criticized. Now that the series is cancelled, we can only wonder what we might have done differently to continue the level of awareness and education that came with the show.
Kamau Bell spoke out about the fact that Born This Way did not win an Emmy this year. (He did)
Thanks @wkamaubell for supporting ALL types of diversity. #Emmys2019 #BornThisWay #321Proud #TRoadWS
When I started The Road We’ve Shared the plan was to address the lack of resources online for caregivers of adults who have Down syndrome. Most of what was out there was for and about young, cute children. When I posted a set of resources regarding adult health care, I was bombarded with negative comments. Parents of young children called the information depressing and pessimistic. When we talk about accepting our adult children at the level they are, we get assaulted for placing limits on them. If we post pictures and celebrate our children being accepted in ways we didn’t anticipate, like being crowned homecoming king/queen, we get criticized and accused of participating in “inspiration porn.”
We can make a video of a child and a dog go viral in no time but when information regarding devastating racial health disparities comes to light it barely gets noticed.
Parents in our community have strong feelings about the groups that are meant to advocate for us. Some don’t participate at all because they don’t think the groups represent their needs. (There’s truth to that.) Some choose one or more to support based on what’s important to them. The truth is that groups are only as good as the people who run them. People have their own perspectives and agendas. Some groups tend to represent a specific political bent. When we concentrate solely on our Down syndrome groups we lose the power of joining with the larger groups who support all people with intellectual and developmental disabilities. We would hope that our Ds groups would join coalitions of other disability rights groups on issues that affect us all, like the Disability Integration Act, but it doesn’t always turn out that way.
When we share our thoughts on social media we do so at our own peril. No matter what we say, there is a contingency of zealous and vocal parents on the other side of the issue. Many parents just withdraw – choosing not to participate at all rather than risk the bullying that takes place, even in groups that are supposed to be there for us to share with other parents.
I’m not saying that differences don’t exist. It’s true that our experiences are different and therefore our perspectives on issues are going to be different. I just wish that we could all acknowledge that, like autism, Down syndrome exists on a spectrum. The existence of one person does not diminish another. When groups claim to work for all of us, hold them to that. Make sure everyone in our community is considered. Advocate for laws that help all of us, not just those who can afford to have savings accounts. Recognize that a great number of adults with Down syndrome live in group homes and have very little voice when it comes to organizing their own lives. Contribute to groups who serve the whole community like Special Olympics and the Arc. Agree to disagree with parents who think differently than you. We should never, ever feel the need to accuse another parent of disgracing their child because they feel overwhelmed or sad. (Yes, I’ve seen it done.)
In honor of Down syndrome awareness month this October, I’ve created a new graphic and hashtag.
The rainbow comes from The Road We’ve Shared’s logo and represents what I hope we can come to agree on – each of our children is unique – and we’re stronger, more beautiful together.
There is no one way to experience Down syndrome. As important as it is for us to be proud of our own child, it’s equally important for us to be proud of our community. Not just the few we see on television or in movies. Not just the one we saw on an Instagram photo at his graduation or in a magazine ad. We should be gracious to the parent whose child wasn’t included in school. We should listen as intently to a parent who says their non-verbal child loves his job at a “sheltered workshop” as we do to a parent who has created a fantastic new business for their child. We should be a source of comfort to parents who are dealing with Alzheimer’s or the grief of losing a loved one. In general, I wish we could all learn to offer support and express a different point of view without criticism or judgement.
We should support all people who have Down syndrome, not just the ones like our own.
The more we separate ourselves the less we can accomplish.
Hopefully we’ll all be #321Proud, this October and always.