Scapegoating of the Disabled 2013

Today I posted on facebook a link that came across my inbox. I editorialized before the post,

“I am a proud voter and a proud beneficiary of social security disability. Both keep me alive to some extent. And now this….I hope they add MARCY WESTERLING to the list – come get me.”

Flyer Targets People with Disabilities

August 2013

People with disabilities are now the target of a hate group in the Portland area. Neighborhoods are being littered with this handbill attacking people with disabilities who receive public assistance. With an underlying tone of violence, this vigilante attack states that people’s names are being posted where they can be seen by taxpayers. The author suggests that receiving benefits makes people with disabilities a threat to the republic.

The Portland Commission on Disability requests that anyone who has received or seen this flyer to please report it so they may track it. Thanks to Human Rights Commissioner, Linda McKim-Bell for bringing this to the Commission’s attention.

Publicly sharing my name for broader use in this context was a conscious but quick decision. I was taught that to stand up for justice, you must stand up out loud.

Adding my name also deals with the issue of ‘passing’. I have passed throughout my life. I am an Aryan of the type Hitler claimed. I am as white and fair as they come. I look heterosexual, if there is such a look, but certainly the presence of a husband helps the case. I am slenderish, menopause and cancer treatments rounding me out more than a bit. I have lived a life of privilege, and even within the sour luck of being diagnosed with metastatic disease, I have managed to work a tough system to gain access to Disability and Medicare – two fantastic programs denied so many because of the waiting periods and reduced income.

I have lived a blessed life.

Standing up for a just society sometimes means that I have to go outside my comfort zone and declare my privilege. I don’t look disabled. I don’t even look sick most of the time and when I am sick, it is invariably because of the treatment. You mainly feel cancer when you are dying. I am not dying right now. I am just terminally ill. There is a big difference for some of us.

I stand up for every person confined more dramatically by his or her disability, vomiting in a bowl, restricted to an institution, or machinery. There are so many faces of disability including the many that don’t qualify because they don’t know to try or they fear the stereotyping that this flyer displays. The flyer says disabled = slackers, the ruin of our democracy.

I share a concern over our democracy but more over how every day whistleblowers are criminalized versus valued, and my list goes on.

We have a lot of disabled people in this country. By some accounts it is a growing number, and perhaps, a growing issue. A dialogue about disability is probably overdue but these flyers should not lead the debate. They could if we were to stay silent. And furthermore, of course, we can find slackers in our bunch. They are there by the pound on Wall Street and in every other layer of society. Let’s not find the 1 case in 10,000 to make a dishonest storyline work.

Disabled is a label few would choose – to be put ‘out of action’. You only need to hang with some disabled to see a lot of action but it may be different action. Some of us blend in well, others are quite obvious, and for both categories the onus is hard – proving you are normal versus taking on the pity/compassion of others. Adding in the label of slackers’ is not just wrong, it is too much because we are a group of people who wish to not have so many barriers to get through before resting.

As a currently able-bodied disabled person, I share this great cartoon and caption. I hope I look great but believe me there is a lot of effort to pass for today. And I am never sure about tomorrow.

Warmly, marcy

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Keeping My Past Afloat

The closing phase of life ideally includes time for reflection. Imagery of elders rocking on shaded front porches as they share stories of years gone by seem right, whether or not current society actually allows or encourages that. Terminally ill, albeit younger, I find myself reflecting more on my past, enjoying the memories.

But I have not enjoyed the past breaking through into my present this July. Instead of rocking, I was called to action – stressful action. Not only did I re-inherit my beloved houseboat, home during my late twenties, thirties and early forties but also it threatened to sink me. This glorious home that looks so wonderful was catastrophically ill below the water. There were other woes after almost a decade of no responsible parenting and constant movement on the river. I needed to sell and I decided I had exactly 26 days in which to do it. I was not going to pay August Moorage fees.

It led to a stressful month as my reasonable asking price became less reasonable as clarity grew that this home needed a buyer with $50,000 + for upfront repairs. I sold it today for $5,000 – a bitterly wrong sum. But I needed to be done with the stress of this house capsizing on my watch and then having a huge financial burden as it was salvaged from the river floor.

Living on disability during what someone called ‘my prime earning years’ does not make me flush. Commuting cross-country for medical care is an additional burden. (This clinical trial only covers actual treatment costs.) It would have been lovely, and appropriate, to sell this home for $89,000 or more.

But the stress is gone. And it is now August. I intend to return to some rocking with the best of memories as companions. Priceless.

Transition to Retirement & Disability with a Party

It is Thanksgiving Holiday week – a ritual of gratitude for many in this culture. The wind howls, the rain (& snow!) falls, the last of the leaves can see their fate. I am excited for winter. These days I am excited for anything that I get to be here for.

Right now I hope to be around for a lot. My body feels good most of the time. The first look-see since diagnosis showed that the chemo had done a valiant job. My cancer had not grown and much of it had shrunk. (Of course what I really wanted to hear was the radiologist’s declaration of NED – no evidence of disease. While you can get that with an advanced cancer diagnosis, it is a little bit of smoke and mirrors. The very definition of Stage IV is the cancer lurks. But my disease is stable.)

And so it is party time. For those who can travel in ROP is hosting a party on December 4th, 2010 unlike anything we have done before. For starters, it is downtown – oh my! (Regrets to all of us who fret the driving but some times things just happen that way.) We have friends flying in that meant so much to the founding of ROP. And hopefully many of you can be there as well!

Why this party? We gather to celebrate the wonder of transitions keeping things very much alive. Cara Shufelt, long time organizing soul mate and dear friend of mine, returned to ROP as I stepped off to my fellowship year with the intent of continuing a long term focus in rural counties outside of Oregon. Her return was not about my health but rather a shared vision.

My health did waylay my plans. My health, though, has not waylaid ROP or Cara. This makes me so happy. So Saturday night, December 4th the ROP community gets to celebrate continuity, new directions, vibrancy, and the thoughtful cycles that define life as I formally retire. Much love, marcy

Roots & Wings Celebration * Saturday, December 4th * 
Portland, Oregon

5:30: Roots & Wings Celebration A joyful look back at where ROP comes from and where we are heading honoring ROP Founder Marcy Westerling, new Director Cara Shufelt, and the growing community of rural leaders at the heart and soul of ROP.

1pm: Community and Resilience in the Face of the Right An interactive afternoon with national movement leaders and organizers from the NW asking what we can and must do to expand our movement for justice and counter the resurgence of the Right.