About the Guest Blogger: Paul Dufrene lives in Lake Charles, Louisiana and works for a non-profit called SLIC: Southwest Louisiana Independence Center, where he helps the elderly and people with disabilities to function productively in the community.
Music, Choice & Disability
For the past few years, I have had a difficult time coming up with an honest answer to questions like “Would you rather not have your disability?” or “Do you ever think about what your life would be like if you were never disabled?” So much of who we are finds it’s basis in the obstacles we face or the interactions we make in this life. So in effect, my life (a gratifying one, that I am constantly pleased with) has reached a point where roughly 99% of it’s contents is connected, in one way or the other, to my disability. That is something I would have loads of apprehension about tampering with.
I was first diagnosed with Friedreich’s Ataxia at the age of 14. Fourteen is a tough age. Your future is an idea that is both difficult to grasp and unnecessary to understand. While most teens just fly through life, I was forced to try to wrap my head around where this progressive, degenerative condition would take me.
Now, I need to make it clear that I didn’t take all this so seriously back then. I geared myself more towards an appreciatory life rather than physical one. I was having a hard time with running at that point and a resignation from the highschool soccer team marked the end to my prescence in sports. I started hanging out with friends who were equally as non-athletic and were into really weird music and movies (weird meaning: Radiohead, Ween, John Waters and Tim Burton. Trust me, at fourteen and coming Green Day and Alanis Morrisette tapes, this was strange!).
Over the years, high school and college came and went and while the degenerative nature of my disability led me down a path guided by ankle braces, canes and ultimately wheelchairs, my tastes also progressed from Weezer to My Morning Jacket to Bob Dylan to Neil Young. I would think “Wow I don’t need to be able to sprint to watch a John Cassavetes film.” I don’t have to jump to appreciate soul music (but, if you can, I totally wouldn’t rule it out).
In 2007, I got involved with the FA community through Facebook and what had been a pretty solitary life in Southwest Louisiana, where I knew maybe one other person with a disability, turned into one full of interactions with people were going through the exact same things that I was. I looked at my contemporaries, those doing little and those doing great things, and quickly realized my craving to be a part of the latter.
In 2009, the opportunity to move up to Philadelphia was made a reality through the loving aid of family and friends. My life of music, film and art admiration hit an all-time high as I could now easily attend concerts, art films and, best of all, spend hours flipping through dusty records. I remember staying up late at night doing musical research, long conversations with record store clerks and trips to Rittenhouse Square with WFMU feeding my ears and turning me on to new stuff to pick up at the record store.
As my record collection quickly reached the triple digits, I began to have this overwhelming feeling of guilt about hoarding all this music that meant so much to me. Finding a way to share this with other people like me would lead to ultimate gratification. This took a lot of thought and patience, especially because of the hard fact that whenever you start something you have to understand three things: A.) If you enjoy it, there are people out there who will too. B.) Some people simply WON’T “get it” and you have to understand and move past that. And C.) If you enjoy doing it and people dig it too, regardless of if you’re doing it for 10 people or 10,000, KEEP DOING IT!
I started my blog, www.platterplaylists.com, in the summer of 2011 to little fanfare. I was still developing my tastes and, in retrospect, it didn’t contain too many “jaw droppers” just a lot of good tunes. In Philly I bought so many records that I would make weekly mixes and each one would garner me one or two new followers. Fast-forward three years and I am back living in Southwest Louisiana, a location I predicted would show little interest in a project like this. I wasn’t totally off, however at the time I didn’t factor in the role of social media. Posting pictures of my records on Instagram and mixes on Mixcloud and tumblr, not only doubled my listenership but draws in at least five worldwide followers everyday. I also started writing and contributing to the music blog Aquarium Drunkard, based in Los Angeles, and Country Roads Magazine out of Baton Rouge.
But over all these years I’ve kept Platter Playlists completely separate from my disability because I’ve always thought that what I do has nothing to do with Friedreich’s Ataxia. That couldn’t be further from the truth. I am who I am because of FA and my art is what it is because of who I am. So the connection is inevitable and to return back to my original questions: Of course I would love to no longer have FA. But I’m not so quick to say that I wish I had a life where I never had FA. Friedreich’s Ataxia has taken me places and introduced me to great people I would have gone my entire life without meeting. I know, without a doubt, that my disability has brought me closer to things I love. Why change that?
Call to action: Do you have important information around one of our seven causes: HIV/AIDS, Mental Health, Nutrition, Heart Disease, Maternal Child Health, Cancer, Disability, that you want to share with a wider audience? Do you or a loved one currently live and/or struggle with one of these causes? Do you work in research, advocacy, prevention, treatment or care? We want to hear from YOU! Write to us today: 7dresses@artsconnectinternational.org to become a featured blog writer. Another way to get involved is to wear the color of the day in solidarity. Take a picture of yourself in the color of the day and Tweet it @ArtsConnectInt, tag us on Instagram @ArtsConnectInt, or send it to us on Facebook.
About 7 Dresses 4 Health (7D4H): 7D4H is a year-long arts and health education campaign lead by visual artist, Marian Brown, in conjunction with Arts Connect International. The objective of the campaign is to promote inclusive community practices through adDRESSing health artistically and collaboratively. To learn more about the genesis of the project, read Marian’s New Year Blog.
About this week's look & location: All of the dresses for 7 Dresses 4 Health were designed and sewn by Kim's Fashion Design. Love the look? Visit Kim at 100 Huntington Ave, Boston MA 02116, call her at (617) 267-9299 or email her: info@kimsfashion.com. Mention 7 Dresses 4 Health for a special discount!
Campaign Update (2017): All 7 Dresses 4 Health blogs were migrated from a former site, so the sharing analytics are inconsistent from when they were first published. We apologize to our guest bloggers, and readers, for this inconvenience. That said, the campaign garnered an average of 5K hits per blog, over 500,000 readers throughout 2015! Additionally, the average number of shares per guest blog was over 150x on social media (through Facebook and Twitter). Thank you for making this incredible campaign possible - and for all that it was for so many. With gratitude, Marian & the ACI Team
