Why Wear Blue For AMC?

Why should you wear blue today? Because it’s Arthrogryposis Awareness Day!

Arthrogryposis, or AMC, is a condition I’ve lived with my entire life. It impacts one in 3,000 people and its characteristics are defined as having joint contractures or joints “stuck” in one position or exhibiting limited flexibility (For more in depth information on the condition, see www.amcsupport.org).

In my fifty years on this mortal coil, I’ve only met a handful of people who share this condition with me so I was thrilled to discover a few years ago an annual celebration of it on June 30^th, known as Arthrogryposis Awareness Day. To celebrate Arthrogryposis Awareness Day one simply posted a selfie wearing something blue and tagged the selfie with #blueforAMC. Who doesn’t love selfies and the color blue? Anyone can take part!

As I’m sure you can imagine when you’re one in 3,000 there is the odd day when a feeling of isolation infects your thoughts and you become consumed by the fact that you don’t look like anyone else you come in contact with throughout the day. This is where you wearing blue and the selfie come in. By posting a selfie and throwing on the tagline, #blueforAMC, those of us living with this condition can easily do a quick search on those challenging days and find, hopefully, thousands of photos of others living the AMC life or people who love and support them. Those images can be very empowering!

AMC has received some interesting press over the past few years. Once you’ve seen the incredible vocal talent of 2013 X-Factor contestant, Rion Paige, and her cover of Carrie Underwood’s Blown Away, which did just that to almost all who watched, it’s hard to forget.

Also, let us not forget Serge Kovalesky who lives with this condition and has been a very successful investigative reporter for the New York Times. Sadly, too many only know about Mr. Kovalesky because a certain presumptive presidential candidate publicly mocked him and his AMC last Fall and not for the achievement of becoming an investigative reporter at one of the most prestigious newspapers in the world. #AMCStrong Mr Kovalesky!

http://ktla.com/2015/11/26/trump-mocks-new-york-times-reporters-physical-disability/

Those of us living, note I said living not battling, with this condition are your brothers, sisters, mothers, fathers, stepmothers, stepfathers, sons, daughters, friends, lovers, husbands, wives, grandkids, grandparents, neighbors, coworkers, the person in front of you in the coffee shop or the grocery store. We work in all aspects of life ranging from strength and training coaches, doctors, teachers, nightclub and radio DJ’s, singers, reporters, to even bloggers. We have yet to become astronauts or presidents that I’m aware of but there is always a first. Although, seriously, who would want to be president?

For me, this day is about celebration! Celebrating and taking ownership of a part of me that has often been closeted or has been perceived as a negative. I worked for twenty years as a radio dj in Boston and never once mentioned on the air that I had this rare condition or any disability at all. The world most certainly did not seem ready for that sort of thing in the 80s and 90s and the risk of being labeled the Disabled DJ was absolutely not appealing to me. Most stories of people with disabilities in those days were what I called Triumph Over Tragedy stories, now more appropriately termed by the late, great Stella Young, Inspiration Porn – one group of people, the able-bodied, benefiting at the expense of another group of people, the disabled. Too often the narrative was this person beating the odds and overcoming great obstacles. We all overcome obstacles in our lives and the thought that my obstacles may seem more than most never sat right with me. Another narrative has been the victimization of the disabled. We are often the props to prove just how evil the bad guys are by brutalizing the defenseless disabled character. I’ve never been a pushover so being the victim always bothered me as well. There were not a lot of stories of us just being us. That narrative has changed quite a bit and for the better. For a while, there was an entire series dedicated to people with disabilities on the show Push Girls and RJ Mitte’s role of a person with Cerebral Palsy in Breaking Bad was very believable and real in part because he actually has CP!

We’ve come along way but there is still a long way to go. The term ableism still rings true. Most roles for disabled characters are still played by able-bodied actors and no one bats an eye. Would we react the same way if these actors donned black faces to play an African American character? Of course not. We still have people with disabilities boycotting films like Me Before You because they felt the portrayal of a character who commits suicide after he becomes disabled is not the message they’d like the world to see of us and not the message we want others who have recently become disabled to receive. The Not Dead Yet campaign strongly voiced their concerns. Random people telling me I inspire them still accost me at the grocery store. Let’s remember an important lesson most of us were taught as young schoolchildren, it’s never polite to point out someone’s differences so can we stop with that nonsense? I’m an inspiration for picking up a mango? I was only trying to figure out how one knows if it’s ripe and then what one does with a ripe mango when they are terrible at cooking and hate all things to do with the kitchen. If that inspires you, buy a mango! But kindly leave me alone; I’m not here for your inspiration. My life isn’t about you. But before you leave, how do you know if it’s ripe?

So wearing blue on June 30^th for Arthrogryposis Awareness Day may seem a bit simple and contrived, I can assure you it’s not. It’s not going to cure this condition but it can make living with it easier for those that do live with it. Plus, it’s pretty easy. Just wear something blue and support your friends, loved ones and fellow AMCers! But don’t forget to post a selfie and tag it with #blueforAMC.