Lent Post #1: A Day of Mourning

Once again, I find myself in a place where I have not touched this blog in quite a while. Lots of things have come and gone that I won’t go into here. Regardless, the fact remains that I need to get back to writing. After all, I wrote a book. And once upon a time, I thought writing a book would finally turn means that mythical beast that many have called a writer. Such a magical creature never suffers from the mundane roadblocks of mere mortals such as writer’s block. At least, that’s what I thought. But here I am, and I haven’t written a book in almost 2 years. I haven’t even really begun one… Yet! So why not start here?
As many of you know, I grew up Catholic. While I’m no longer a practicing Catholic, the season of Lent is upon us and I thought it would be a good opportunity to use it to rebuild something that I allowed the tides of life to wash from my shores. For the next 40 days (yes, I know I’m a little late), I will be writing one entry a day, and I’m going to start with this one. If you’ll forgive me a bit of rambling, there is something I’d very much like to say about lent itself before I get into the meat of this post. The way we were taught about lent as children was that we gave up something every year in order to take part in a small piece of the sacrifice made for us by the figure of Jesus Christ. Many people go about this by giving up chocolate, coffee, certain TV addictions, or what have you. And that’s perfectly fine if that’s what someone wishes to do. But I began thinking that it might be better to add something to your life that you have been waiting for the opportunity to explore. Kind of like an extended jumpstart to a New Year’s resolution, only slightly later in the year. That’s what I intend to do this year: to participate in lent is what I would call a cultural Catholic, rather than adherent to the Catholic faith. Consequently, I will be ending the day after Easter Sunday… 🙂

Now, on to my originally planned portion of the post. Yesterday, on March 1, 2017, I had the honor of taking part in a national day of mourning in remembrance of people with disabilities who have perished at the hands of caregivers, be they hired or family. There were many names, and for an hour and a half we’ve read those names is a group out loud, we also told how the people died, as well as their age. I’ve known this to be a problem in the disability community all of my life, but I had never had the experience of having it placed so plainly before me. I found myself filled with a combination of rage, sadness, and a kind of empathetic fear.

It might help if I unpacked that idea a little bit. What was the empathetic fear that I so deeply felt? It was fear in recognition of the fact that my name could quite literally be added to that list if the circumstances presented themselves. During that time, I also began to feel a kind of silent sadness at the fact that so many people will not be able to participate and lend their voices to the growing movement of disabled rights advocacy. We will not get to hear their needs, their sorrows, nor their brilliant ideas. Worst of all, these were lives that were needlessly snuffed out by people who saw these individuals as mere burdens to be eradicated by laying those burdens down in an extremely gruesome fashion. When I say gruesome, I mean gruesome. There were stories of people who died at the hands of paid killers. There were stories of people who were literally left in closets for weeks at a time to starve, neglected to suffer horrid infections… Some had their heads bashed in shortly after being brought into the world. I was left to ask, “what is the value of human life? And what is it that it means to be human?”I am left with the overwhelming feeling that certain lives are devalued merely because they don’t fit some preconceived idea, either that is carried with the individual passing judgment, or by society at large. At the end of the day, it doesn’t matter which, because these people are gone.

As my long-term followers may recall, I wrote a book called The Gimpy Monologues. At the time, I didn’t really know who the book was for. I just wrote it because I felt like it needed to be written, yet I couldn’t quite articulate why. Now I know. While I don’t want to write about disability for the rest of my life, I know that the books I do write about disability are so that an understanding grows from them. And through that understanding, it is my hope that future generations of people born with various medical conditions which present obstacles in their daily lives, will be born to a global community that sees them for who they truly are: simply another individual partaking in the bittersweet human experience. You’ll notice that in the post I have included an image of the names which were read that night. It is for you that I continue, and it is for us all that I will continue to write and to do my best to open the eyes of those around me. I’m truly sorry that I didn’t see it before.

Please forgive me.

PS. If you are interested at all in purchasing my book which I have done a horrible job of promoting on this blog, please note that you can find it here.


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