April 16, 2009
Special Olympics, Redux
A few weeks ago there was a bunch of discussion about the verbal gaffe made by President Obama with respect to Special Olympics. I meant to blog about it at the time, but being really swamped didn't get to it. Then I was phoned by the Special Olympics, which reminded me I hadn't done so, but I thought it was too late and no longer timely. Today I noticed a recent blogpost by Jim Tome about Special Olympics and their use of social media to campaign for more appropriate use of conversational language relative to persons with intellectual challenges or learning disabilities.
Tome, Jim. Special Olympics Targets “SM” in New Campaign. Organic Marketer, April 9, 2009. http://organicmarketer.wordpress.com/2009/04/09/special-olympics-targets-sm-in-new-campaign/#more-93
I still have my original draft of what I wanted to say, so am pulling it out, dusting it off, and hoping it is still relevant to our readership.
A big part of the discussion that flurried across the social media and my email lists was about what the original intent was in President Obama's statement, or whether it mattered. People were offended by the original statement, the idea that it might be funny, by the apology, the perceived intent, the explained intent, the implied intent, and more. Other people were defending him for the same statements. My own first and strongest reaction was, "Thank God I don't have a job like his where every word I say is looked at under a microscope." God alone knows how many times I've stuck my foot in my mouth saying something well-intentioned that was heard otherwise.
I am not so much concerned with what Obama said or why he said it as I am with the discussions that arose around the trigger event and the filters through which we listen. I want to share three of my own stories to illustrate this from different points of view.
There is an interesting chapter about this in a book I like. In Cloister Walk by Katherine Norris, she mentions being in a small rural town in a social space where there is a young man who has never heard of homosexuality being "hit on" by another guy but not knowing it. She also mentions in the same book rural folk using language to describe African Americans that would pejorative in other places coming out of other mouths, but which was not remotely intended as such. She talked about how utterly baffled and bewildered the young man was when someone tried to explain this to him, and how the good heart is sometimes hidden by these types of gaffes. So part of the problem becomes not how the other speaks, but how we listen.
When I was a child, the very first African American family in our town moved in across the street from my family. We had never seen anyone with skin like that before, and thought it was really pretty. One of my siblings, younger than school age, told the little girl that her skin looked like a Hershey bar. He meant nothing by it other than the literal meaning he said. Her parents were so deeply offended than no one in our family was ever allowed to play with their children again, and they moved away as quickly as they could resell their home. I was too young myself to understand what was happening - probably around age 8? - but it hurt, and has bugged me my entire life.
Recently I stumbled into a previously undiscovered online public forum from my hometown. The top discussion link was for a conversation about "the crazy man who wears a skirt." As an active advocate for and ally of the LGBT community in general and the transgendered community in particular, with multiple relatives among LGBT folk, I was aghast at the title. I skimmed the beginning and end of the over two dozen web pages of discussion engendered by this topic. The discussion seemed to focus on psychoanalyzing the man, with the basic tenet held to be that he was either crazy or transgendered and therefore crazy, with a strong preference from many of the speakers that the man just go away because he is someone they would rather not see. LGBT teens have, I believe, either the highest or near highest rate of suicide for any population in the country. I can only imagine the impact of more than 24 pages of active ongoing public discussion about the reaction to this person simply walking down the street. I am looking for the teaching moment, and struggling to find a way to join the discussion, but at this moment I am deeply saddened and a bit ashamed for my home.
Here, I work with Let's Face It, an organization that supports persons with facial difference. Our slogan is "To support a person with facial difference, look them in the eyes and smile at them." I think that works in a lot of places, for people with a lot of different types of special needs and abilities. I have tried to take that to heart.
Once I was walking to the bus after work. From a block away I saw this young man notice a young woman standing at the stop. She was very slender with this absolutely stunning thick gorgeous tawny mane of honey gold hair. He got this little swagger in his step, an intent look in his eyes, and strolled up to her. Clearly he was intending to, um, try to get to know her a little better, shall we say? I was too far away to hear what he said, but I could see his reaction when she turned around. (She had hemifacial microsomia.) He jumped as if he'd received an electric shock, then literally ran away, past the end of the block, into the street. A couple times he turned and started back to the bus stop, but he started shaking uncontrollably, and instead turned away, hunched over himself and waited in the street until after she had boarded the bus, at which point he made a frantic dash to catch the bus before it left. Meanwhile, I walked up to the young woman, smiled at her and cheerfully said, "That's a lovely bag. Did you do the quilting on it?" and we talked about quilting for a while. She told me that she would get her parking pass in 2 days and then would never ride the bus again.
What makes me most sad about this story is the way both of them were clearly hurt and hurting. Yes, it is tempting to want to blame the young man, but he was hurting also, although I certainly wish that he was made of sterner stuff and had been taught somewhere along the line to look beyond appearance. I hope that he later looked back and this and wished that he had been less hurtful to the young woman.
I very much like what one woman on an email group said about "take ownership of stereotypical terminology." I tend to espouse the "walk a mile in another persons shoes" approach. I ask my kids to imagine what life is like for the person. Once they realize that they don't know enough to do this, I will help them find stories or videos, or share stories of people I know, or use my imagination to help them along. I often find, like Katherine Norris did, that the hurtful comment made by an adult will have come from ignorance without any intent to cause harm. They simply don't know enough about the person or people to imagine the effect of the comment. I try to not blame the person and assume ignorance. I ask a lot of "what if" questions. What if the person is mentally ill? What if the person is transgendered? What is their life like? What can they not do that you can? How does this make their life easier or harder? How do you think they would feel about [blank]?
So, yes, incidents like this can be disturbing, or hurtful, or heart wrenching, but I think we who have had reason to learn why and how to be more sensitive need to use that to help others learn, not to create a blaming environment. At the same time, we need safe spaces like our support groups and email groups to say, "Yes, that hurt." So now, how do we go back out into the world to make this a learning experience?
April 06, 2007
Consumer Health Advocacy in Second Life
Have you heard of Second Life? Just in case you haven't, Second Life is an online 3D role playing 'game'. You see, it is not so much of a game with rules and a goal to win as it is an immersive imaginary environment, a place to go and be that allows people to reimagine themselves and their environments.
In Second Life you will find homes, jobs, gardens, shopping malls, nighclubs, libraries, and many other accoutrements of real life. The University of Michigan Medical School is getting involved with Second Life for education, as are many other organizations. There is a consumer health library group in Second Life known as HealthInfo Island.
In the link below, you will find that a major force in Second Life for the consumer health outreach of HealthInfo Island is a young woman who was transformed by a facial injury into a consumer health advocate.
InfoIsland: Second Life healthcare advocate interviewed for ‘Who’s On Second?’: http://infoisland.org/2007/04/03/second-life-healthcare-advocate-interviewed-for-whos-on-second/
March 17, 2007
Let's Face It, AboutFace USA, & SlideShare
Many thanks to Marita Inglehart for inviting us to speak as part of the Multicultural Affairs Committee series on disabilities and dentistry. The presentation slides are available on SlideShare.
Let's Face It Comes to Michigan: Lessons Learned about Web Sites for Persons with Facial Difference: http://www.slideshare.net/umhealthscienceslibraries/lets-face-it-comes-to-michigan-lessons-learned-about-web-sites-for-persons-with-facial-difference/
In SlideShare, there are other presentations about persons with facial difference and how to support them. Highlighted here are those from AboutFace USA, in particular a presentation to the UNLV School of Dentistry that includes information about clinician-patient communication with persons with facial difference.
AboutFace USA: http://www.aboutfaceusa.org/
SlideShare: AboutFace USA: http://www.slideshare.net/aboutfaceusa
SlideShare: AboutFace USA: AFUSA UNLV Presentation: http://www.slideshare.net/aboutfaceusa/afusa-unlv-presentation
January 01, 2007
Betsy's To Do List
Kelvin at Ramblings sent us a copy of his New Year's blog post, highlighting an inspirational bookmark he received from Let's Face It some time ago. Many thanks, Kelvin, for sharing this with us!
* Mend a quarrel
* Seek out a forgotten friend
* Dismiss suspicion, and replace it with trust
* Write a love letter
* Share some treasure
* Give a soft answer
* Encourage youth
* Manifest your loyalty in word and deed
* Keep a promise
* Find the time
* Forego a grudge
* Forgive an enemy
* Apologize if you are wrong
* Try to understand
* Flout envy
* Examine your demands on others
* Think of your neighbor first
* Be appreciative
* Be kind and gentle
* Laugh a little
* Laugh a little more