From the Archive: Originally posted 9/23/13
Let us not look back in anger, nor forward in fear, but around in awareness.
The definition of awareness is a state of knowing and being informed of something. noun
These days, I think most people “know” the term Down syndrome. That wasn’t the case when Josh was born, at least not for me. I had no idea what the syndrome was or what it meant for my child. Most awareness campaigns these days focus on giving the public a better understanding of something they may recognize, but are not “informed” about.
Our national groups have worked long and hard to change the public perception of Down syndrome. As a community of parents, we may not always agree on the methods used (“inspiration porn” or “charity walks”), but we should at least be grateful that times have changed – some. We no longer hear “institution” as the only acceptable outcome when a child is born. Unfortunately, there are still way too many people that think 1) the child should not be born at all, or 2) a child is a ‘burden’ that needs to be ‘handled’ by society.
We shouldn’t “look back in anger,” but we should look back. People who have Down syndrome have made amazing strides in the past century. There have been a host of tremendous individuals who have done great things to make our lives better today.
We shouldn’t “look forward in fear,” but we should be aware that there is much more work to be done.
Two very important concepts come to mind when I think about how #JusticeForEthan applies to the bigger picture of Down syndrome Awareness.
The Immediate Issue
Our work here is far from over. Emma, with the help of some dedicated activists like the people at Change.org, has managed to make a lot more people ‘aware’ of what happened to her brother. Unfortunately, knowledge of the event does not bring understanding. There are still too many unanswered questions. In light of Ds Awareness month, I would suggest that one of the most important questions is how much disability played into the equation. Some would argue none. The amount of force used by the three deputies was sufficient to create a similar outcome with someone who did not have a ‘label.’ Some would argue that sensory and language issues present in anyone with a cognitive disability created a dangerous situation; one that could have been alleviated if the security guards would have listened to the health care worker. Some have even argued that the reaction of the deputies may have been biased based on what they expected Ethan to do (all people with Down syndrome are ‘angels’). We do know that the guards were ‘aware’ that Ethan had Down syndrome. The health care provider gave them that information, even if they couldn’t tell on their own.
I would argue that the reaction, or lack of, from the public and mainstream media has been at least in part, influenced by the fact that Ethan had Down syndrome. So many other cases involving use of force by police have gotten national attention and outrage. In fact, a number of people responding to Emma’s petition cite ‘police brutality’ as the reason they are concerned about this case. Yet, a concern about police action is not enough. Is that because the ‘victim’ is seen as less worthy? If you browse the comments on several articles you get the impression that there is at least a segment of the population that believes his death was his own fault, or that of his family, and that it doesn’t really matter that much because he was a ‘burden’ to everyone.
Which brings me to the lack of commitment from Governor O’Malley to order an independent investigation. If this had been any other victim, would he be so silent? We all know by now that the governor has his eyes on the White House. If this case was seen as anything but a ‘disability issue’ would he have avoided the cameras, or would he welcome any chance to be seen as the hero?
Continuing the March
A positive outcome of the #JusticeForEthan movement is the number of individual parents and activists who have taken up the cause and given it a voice. By writing and communicating, we’ve unveiled a deep desire for change. We’ve also discovered just how diverse our opinions are about what that change looks like and how to get it. As we get ready to acknowledge October as a month dedicated to awareness, it’s my hope that we can find a way to come together. In my opinion, we need to continue working on getting an independent investigation, help shape the path of training, and come up with helpful solutions for families who struggle with safety issues. I also hope we can agree that something needs to be done about the cases that don’t get the support and voice that Ethan’s has. Over the past nine months, I have become more aware that civil rights violations against people who have Down syndrome are not uncommon. How many incidents go completely unreported? Social media gives us an opportunity to change that. We need to utilize the tools we have to create a reporting / tracking method so that parents know there is somewhere they can be heard.
Look “Around in Awareness”
No matter how you decide to celebrate October, I hope you’ll let people know that you love someone who happens to have Down syndrome. Isn’t that our main message? By sharing our stories, we have a unique opportunity to influence ‘awareness.’ People respond to concrete examples much better than hypothetical’s, theory, or symbols. Ethan and Emma have taught us that much.