I’ve been thinking a lot lately about an individual’s responsibility to their community and how much we need or don’t need to worry about “representing” Down syndrome to the public.
It’s interesting to me how people from minority communities feel pressured to be representatives to the world. Isn’t that the point we’re trying to fight? Don’t we want people to be themselves and not expect others to categorize all people with a presumed label as similar?
I’ve been struggling with this thought for days, but people of color have tried to voice this phenomenon for quite a while now. Is it only the people who do well that feel this pressure? Or is anyone within a particular group subject to criticism based on their image? What is most interesting to me is that the harshest criticism seems to come from within that person’s community.
I understand the theory behind the critique. If we don’t change the way people think about a certain label, oppression continues. I just wonder, don’t we add to the oppression of an individual if we criticize how they choose to express themselves, whether that’s by choice of clothing, lifestyle, word choice, or what they write about in a personal blog / memoir. If, as noted in an article I found, when one person “behaves badly” we allow that to define a group, aren’t we contributing to the problem? Apparently, it doesn’t matter if a person commits a terrible crime, simply uses the wrong word, or tries to promote inclusion but gets some points out of line with what others want.
I’ve also been puzzled by the level of rhetoric in some circles around the recent Guinness ad. I know that debate and discussion are crucial to moving the status quo, but it gives me pause to see people really being, what I consider, vicious. Has anybody asked whether the person who stays in the wheelchair is an actor pretending to have a disability? If he actually uses that chair in real life, does that make a difference? Listen to Greg Smith’s interview with Guinness Brand Director, Doug Campbell. The people who designed the ad did reach out to a disability organization, but I’m sure there will be discussion about which organization they talked to and why. Steve Hoffman is an actual wheelchair basketball player and his coach is also in the ad. Do we, as a community have a right to say that his voice is ‘demeaning’ to others? Do we have a duty to do so?
I don’t want to be a role model either. I just want to tell my story to whoever wants to listen. I’ll screw up… I don’t have a really good filter when it comes to things I feel passionate about. I’m sure I have, and will continue to upset people because my perspective is different. I do enjoy hearing other perspectives and sometimes those thoughts change the way I see a situation. But I can tell you, I respond better and listen more when it’s presented in a way that doesn’t feel like I’m being persecuted for the way I feel / think.
Constructive critique is a good thing, but where is the line? Or does one even exist? Do we all have to be “role models,” even our kids? Do people who have a greater audience shoulder more responsibility than the rest of us? Or should we allow them the freedom to live genuinely without putting the weight of a whole community on them? What exactly is our duty to critique and how far does that go? Obviously I have a lot of questions about this issue and welcome all responses. I’ll tell you up front though, I for one believe in the adage, “You catch more flies with honey than you do vinegar.”