“Hi Meg. I am Patti, President of the Helping Hands Foundation. We are a non-profit support group connecting families of children with upper limb differences. We really enjoyed your segment on the Today show yesterday and would just be thrilled if you could come speak to our HHF members at an upcoming conference.” I sat back in my chair, absorbed in thought. First, I was completely flattered. However, admittedly, I also hesitated. If I were to associate myself with the Helping Hands Foundation, as incredible of an organization as I knew it to be, it would be a first time for me – a first time putting myself out there as “one of them”- someone with a limb difference. Was that such a bad thing? No, it wasn’t in the least bit and I am quite self-aware anyway. Instead, my reluctance stemmed from the fact that my goal with my blog and website has been to use my life experience to help celebrate all differences. I’ve aspired to reach the broadest possible audience and worried about being pigeon-holed. Yet, I could never explain this rationale—it even sounded ridiculous to me. And so, I sat upright. “Thank you Patti for reaching out. Let me get back to you perhaps for a future date.”
Time to (continue to) keep it real for all of you. For years growing up, the thought of being associated with anyone that had a blatant physical difference was something I resisted. More than anything I wanted to be like everyone else. Why allow myself to be grouped? After all, it was contrary to how I felt about myself on the inside anyway. I don’t doubt that these feelings stemmed from a childhood where I felt that no one in the world was like me or could relate. That was a time before there were fabulous organizations like the Helping Hands Foundation bringing together people on a similar life journey. Instead, I was living with my family in five different countries in the Middle East and South Asia in the 1970’s and early ‘80’s. There, people on the streets begged my parents for money but, after seeing my hands and shortened arms, made pitying gestures toward me, as if I had it worse. When we returned to the States I dreaded the idea of being considered different; someone to pity. And so, I proactively limited my friends, the guys I dated, quite frankly everyone with whom I associated to those without a physical difference. I wanted to hang out with “normal” people and only then (at least in my own mind), would I be seen as one of them.
Even as I grew up and got married, I continued trying to control the people that I got to know well during my personal life. However, the Universe would intervene. After having Ethan and later Charlie who both share my genetic condition, I was thrust into a life with people who not only looked physically different, they looked like me. As I have written in past blog posts it was through the unconditional love I felt for my kids that I finally began the important journey of self-acceptance. I was finally comfortable enough in my own skin to open the door and welcome everyone in.
In this context I couldn’t help but feel a mixed reaction to a new video titled, “Because Who Is Perfect? Get Closer.” http://www.youtube.com/watch?v=E8umFV69fNg#t=41 Pro Infirmis, a Swiss organization, wanted to raise awareness that no one has a perfect body. They created a series of mannequins displayed in Zurich, Switzerland based on real people with physical differences such as spinal curvature and limb loss. Before I even opened my eyes to watch, I was sold– immediately pulled in by the soothing background melody. But beyond the music, the video was phenomenal, it even felt a bit spiritual, in its capturing of the joyous reactions of the real-life ‘disabled’ models seeing themselves depicted as mannequins. But then I reconsidered.
At the end of the video, as the ‘imperfect’ mannequins were placed in the window display, all the ‘perfect’ mannequins were simultaneously removed. And then, as I watched passers-by on the street peer in, my stomach turned a bit. “Why is it that to demonstrate imperfection, the group of physically different mannequins needed to be grouped together alone?” I realized that in that moment, I was talking to my screen. That week, I moved on, but the video and its imagery stayed with me.
As I began to formulate my views on it, I decided to share the video (and include my reaction) with the Don’t Hide It Flaunt It Facebook community to get their reaction. “I love the idea of mannequins being created to reflect people that are not visibly ‘perfect.’ However, I keep wondering why this had to be done in a way that is solely focused on people with perceived ‘disabilities.’ If the goal is to replicate true physical replicas of (all) people staring back at the mannequins, then why not also include additional new mannequins in the SAME display–that are (for example) heavier, mixed race, with acne, [and fill in the blank….]. Isn’t that, after all, all of our reality?” Not surprisingly, most people loved the video like I did, and expressed their own insights. One person wrote, “I think by showing the not visibly perfect body is a just a first step of opening our minds and eyes and hopefully our hearts.” Others wrote that true beauty could only be found in the heart. My heart swelled reading the thoughtful notes from the DHIFI community. And then, another woman added, “When we put disability on display in the same context as other differences (e.g., heavier, mixed race, acne), we challenge the perception that disability is something to be feared, fixed or avoided.”
Having a blatant physical difference has meant not only learning to accept myself, but also to embrace being categorized as a member of group that often elicits pity or shock or even (momentary) revulsion. If Pro Infirmis’ goal was to “get closer to imperfection,” of course I understand why they needed to include those of us that look so physically different and also remove the size 0 mannequins that didn’t represent the majority anyway. However, to me, they actually didn’t need to create these new mannequins of the ‘disabled’ and showcase them alone to prove their point. By simply turning their video camera away from the window onto the street, they could have immediately highlighted realistic examples of public imperfection, where we are already on display all together anyway.
When Patti reached out to me again later that year I began to reconsider my initial reaction. It finally dawned on me that I was willing to make myself available to speak to every group out there – except the one where the members looked like me! Oops. It was time to work through my issues. Thankfully, I regained my senses and was truly honored to accept the keynote speaker role at the Helping Hands Foundation’s winter conference in January 2013. The genuine authenticity of those involved and the level of support offered to members was undeniable. Being there in the room that day with all the participants and their children (and my own children), along with new friends like Tony Memmel, Ryan Haack and Nick Newell and his awesome mom, was like receiving a collective warm hug. It was by far one of the most incredible experiences my family and I had ever had. And, some of the HHF kids, hoping to write for the Don’t Hide It Flaunt It site, gave me the idea for the Kid Flaunt. This year, the HHF winter conference is again being held the weekend of January 24th 2014 in Boston and the fabulously flaunting Nicole Kelly, Miss Iowa 2013, will be this year’s Keynote speaker. For those that can make it and are touched by a family member with a limb difference, the experience is simply a must. http://www.helpinghandsgroup.org/user/register