Life does not cease to be funny when people die any more than it ceases to be serious when people laugh – George Bernard Shaw
I was just beginning to come back from my writing hiatus when I received a phone call, the one every human dreads. In my last article, I wrote about a close trio of friends from college, James, Steven and myself, and recently meeting James during his flight stopover in Denver. The caller told me that James, who had reached his five-year goal of going to live with the love of his life in a different country, unexpectedly passed away this last weekend.
Young and bursting full of life, James’ passion for disability rights, friendship, sake, Asian music and community was just contagious. He always dropped hilarious yet profound James ‘nuggets of wisdom’ and was never known to shy away from a dance off.
Although he could have made big bucks in marketing, he chose to work at an Independent Living Center to ensure people could live lives to their utmost extent.
James packed more into 30 years of living than most people do into 60 or even 90 years!
Now that his journey here on earth is through, the biggest and most challenging struggle is to honor his legacy.
First, I pledge to carry on his fight against ‘Inspiration Porn’, a phrase coined by New Zealander Stella Young.
Young, an hilarious young woman with a disability of Ted Talk fame, succinctly described why growing up with a disability does not make us heroes, inspirational, bitter or angelic people. It is now almost common vernacular. Former Arizona Representative Gabby Giffords has complained about being viewed through this lens.
In 2007, I had posted the famous (infamous?) Scott Hamilton quote in our college cubicle: “The only disability is a bad attitude.”
In true form, James took me to task. “Take. It. Down. That is just backwards thinking Katia.” True to form, there are now several memes of Oscar Pistorius with this quote, an Olympic amputee now in prison for murdering his girlfriend, floating around the internet. Touché James.
Secondly, I pledge to start a serious conversation about community support, young adults with disabilities and yes, occasionally grief.
James’ community is a tight-knit one in which the members make time for each other to process the loss. This is not the first young adult friend I have we have lost to chronic illness/disability. In fact, the great Ms. Stella Young, passed away this December at the age of 32.
I applaud CreakyJoints from the bottom of my heart for being on the forefront of advocacy and online community for people with disabling conditions, offering positive, supportive solutions, true community and fighting against antiquated stereotypes.
However, dear reader, I am asking for your help. How can we at CreakyJoints better support young adults with serious chronic illness on their ever changing journey, their loved ones and build a strong community?