I am writing this blog, right now, because I'm taking a break from doing something that's frustrating, infuriating and fun. I'm learning a lot, I'm figuring out how things work and slowly, I'm getting through the work. But ... sometimes I need to let my mind rest and take a break. So, I thought I'd talk to you all.
Only moments ago I had a Facebook experience that I want to chat about. I'd seen a comment on a friends page that was 'odd' so I commented saying, essentially, WHAT? Then I was told that this was part of a Breast Cancer Awareness Game. With that came instructions for how to participate. I liked the idea, awareness is good right, so I participated by putting up one of the statements I had to choose from. The idea was that anyone who responded would get a message from me about the game and the meaning behind it. I chose 'I used my boobs to get me out of a parking ticket.'
Then when responses came in, I thought I'd add to the message by putting something in about the game and awareness and found articles which spoke quite derisively about the game. I immediately had a 'rethink' and then took down my post and posted, instead, an explanation and an apology.
I decided to write about this here because I had a moment's insight about the need for me to check my initial responses to issues that do not or have not directly affected me, with those who have been directly affected. What might seem to me to be a good idea, might seem to others to be offensive, perhaps even deeply so. I know this, and I shouldn't have made this mistake. I know that I wish some people would allow people with disabilities the honour of having expertise in our own lives, having voices which need to have prominence in some areas and having vital information to add to any discussion about disability. Too often I see disability discussed as either a professional or parental concern. While those viewpoints are valuable, I don't disagree there, but they have to be tempered by and sometimes seen as secondary, and sometimes negated by the voices that speak from lived experience.
It was so easy for me to think 'wow, this is fun' without thinking, I wonder how this 'game' is seen by people who have experienced breast cancer. It was easy for me to think that my opinion was informed without thinking about 'informed how?'
Voices. Therein lies lived knowledge.
I pledge to try and remember constantly.
6 comments:
I often see people on Facebook doing what I call "mascot-ism" or sentamental-izing the experience of disability, or other human experience. Posting the prom queen with down syndrome story, etc. While I wonder how they treat the REAL people they know with disabilities or how they allow stereotypes and prejudice to flourish outside the FB world.
A valuable lesson for sure. I too, was sent the information regarding the 'awareness' campaign on FB. I didn't quite see how it was raising awareness... having close family members fighting Cancer- several losing the fight.
I am also leery of other awareness agendas such as the one for World Down Syndrome Day where people are encouraged to wear un-matching socks...Not sure how that works? What does it do for awareness? Does it send the message that people with Down Syndrome can't match their socks properly? They can't dress themselves independently... Here where I live, we have "Inside Out Day" to raise Autism Awareness/Acceptance in October... I cringe at the thought of it. School kids are encouraged to donate a twoonie so they can wear their shirts inside out to show Autism Awareness/Support... As a parent of a child with Autism, I have supported my child for years teaching her life skills, skills on how she should wear her clothing- (buttons, zippers,how to tell if her shirt was on inside out etc.) What message are we sending with this one? God love those Autistics, they can't even dress themselves. I will wear my shirt inside to show that I accept them and their inside out ways...
With World Autism Day on the horizon, we will see puzzle pieces (a symbol of how puzzling Autism is), people will be encouraged to light their homes/businesses up Blue to show support/acceptance for those affected by Autism. How does lighting your world up Blue show awareness? Blue to me, symbolizes the emotion of feeling BLUE...why does awareness/acceptence have to wear a color. Why can't it just be?
I must say, I am guilty of wearing various ribbons to support a variety of causes and this past weekend, helped our daughter make Autism Awareness Ribbons for World Autism Day. Perhaps it is a way of showing the world we are aware... because our actions and our intentions are not always so transparent and our voices not always heard.
Spot on, once again Dave!
I have observed that people often like the idea of supporting a cause or issue when it extends no further than a keyboard. Most "feel" wrong, especially those that say "repost if you care about people with cancer" or whatever, as though failing to repost means you don't. Facebook has changed the landscape of our interactions and some of it isn't an improvement.
Hello Dave!
In Essential Babies/Kids (Fairfax Network parenting news website) people have been discussing the "no makeup selfie" and the "bravery" involved.
These canned messages (like the one about boobs).
Also Heidi for talking about other and related "awareness agendas". And Dawn about "keyboard supports". And thank you Anonymous about "How they treat the real people...how they allow stereotypes and prejudices to flourish outside Facebook".
Yes. Someone posted that anyone whining about makeupless selfies for cancer awareness was "pathetic" and "needed to get over it". I linked to an article written by a cancer survivor about WHY she took issue with it and someone else got very angry. I was just saying that we should hear all sides of the story. If someone with cancer takes issue with how cancer awareness is happening, we have to listen. Just like we need to listen to any other self-advocate.
Agree with all of these comments and especially like Dave's line: "I pledge to try and remember constantly." Being aware and willing to keep learning is the key.
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