by E. Amato
Wow - this past week or two I have read some of the most amazing pieces about ability, disability, living, and dying, with illness.
It feels a little bit like a moment.
We'll take it!
Maybe you've read some of these via posts on social media. maybe not. Either way, they are all worth of a read, a check in and some thought. If you are an able person, they offer ways into being allies to the less able. If you are less than able, they offer some much-needed solidarity, perspective and thankfully, humour.
1. I was so thrilled to read the open letter from Samantha Cleasby, who was shamed for using the disabled toilet. A severe case of able on the outside assumptions, this letter spelled it all out. Cleasby's a mom, a writer, and someone making her life work despite limitations. Really, she's a shero and not someone deserving of shame. This piece is so typical of daily life when you are able on the outside, I'm truly grateful for it.
"My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too."
"Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts."2. Many, many, many people posted and re-posted Oliver Sacks' New York Times Op Ed piece calling it brilliant, humbling, important and other accolades. The piece is sincere, well-reasoned, and heroic in that it is written in the latter stages of illness. It highlights the tremendous divide between the well and the unwell, the able and the disabled. If you have ever been unwell, facing limitation, disability, declining health, uncertain outcomes, this is how you function. These are the choices you make. I don't even think you retreat from or change these choices if you recover, for you always have the knowledge that you could return to the former state. Sacks comes across as a very normal human being faced with stark life choices. It's remarkably unremarkable, and for that, noteworthy.
"Looking back, I realize that I've been trying to report my way out of this disease..."
3. Perhaps more groundbreaking, is Laurie Becklund's cogent article, "As I lay dying," in the Los Angeles Times. Dying of metastasized breast cancer, Becklund pens a call to action. She lays out the futility of current practices, the intense need for statistical analysis, different methods of treating and assessing treatments, and updated channels for new solutions. Even knowing none of this will help her, she is adamant on what the course needs to be. It is a much needed and sober look at how our medical system lags decades behind practices in other industries and what that means for patients like her.
"If you had asked me before the diagnosis if I thought I would get cancer. I'd have answered that I would have to be in the bottom one percent of population. I am in the bottom one percent of the population."
4. One of the most moving and life-affirming things I've read in a long time are the journals of Vid Warren, Dealing with Cancer. Vid passed a couple of weeks ago at the age of twenty-four. I met him about 4 or 5 years ago, when I performed at the same show as he did. He was an extraordinary talent and one of those people for whom life is filled with wonder and possibility, He never stopped learning more, practicing his craft, and living and sharing fully. The journals are a testament to that. This is a great loss. I feel he would have continued to develop as an artist and performer into someone absolutely fascinating (he was kind of fascinating already). Yet, the journals show us that life can be beautiful in any moment. That is can be considered precious in any moment. That hard work, perseverance, skill, talent, humility and all those wonderful qualities someone may possess don't necessarily mean a long, healthy, happy, productive, successful life.
“I can confirm it’s not possible to twerk in a wheelchair,” she once tweeted. “It looks more like you have an itchy backside. You’re welcome.”5. This article on the life of disability writer and activist Lucy Glennon just about broke my heart. Her life, her work, her experience, they are all shattering. Disability in the US is comical. Sorry, but it is. If you're truly disabled, you need a small army of people and a whole lot of time just to get you on disability, which then gives you just enough money to be constantly worried about every penny. The UK and other countries have always been better at caring for their vulnerable citizens, yet the tide has turned and they seem to be using the failed systems in the US as a model. Lucy's story should shame all those who argue for lower benefits that are more difficult to accesss. I wish I knew her.
Other posts in the series:
Dear Able People
Wearing the Inside Out by Jerry Garcia
Zestyverse Editor/Publisher E. Amato has woven a creative life that moves fluidly between words, stages, film, and practical activism. She was a member of the 2011 Los Angeles Slam Team and has competed at Poetry Slam Nationals and WOWps. In 2010, Zesty Pubs released her first collection, Swimming Through Amber, her Kindle book 5 in 2012, and her second poetry collection, Will Travel, in 2013. In 2007 and 2008 Down Home traveled to the Festival Fringe in Edinburgh, garnering 5-star reviews consecutive years – a rare honour. She recently produced Homeless in Homeland, Saria Idana’s solo piece, which received 4 stars at the Brighton Fringe 2013.