April 2018

Wednesday, May 6, 2015

Technicians and Healers

I have submitted this piece to a UW Health Sciences symposium. It's not exactly what they were looking for, but this is what I have to say.  If accepted, I will deliver this to students pursuing educations and careers in the health sciences. I want to communicate to them that they are learning to be technicians, and their technical expertise will be important, but I hope they will become healers.

I thought you might be interested in reading this, since it includes a summary of my experience as well as some new ideas to this blog. I'll let you know if I get to share it with the students:

Health equity reflections

Who am I?

The nine-months-and-five-days child of a nurse and a doctor,
I am from Grady hospital’s white wing,
I am from a house on a hill,
from copperheads on a suburban acre.

I am from
the magic word and the golden rule,
from "Have you done your homework yet?" and
from Mahalia at Christmas: “O Holy Night.”

And I am
a child of the seventies,
of Watergate and

 Now home is in
the Land of Starbucks,
the Mountain,
and the U.

I am
a woman in love
with a woman.

I am
a survivor:
two brain tumors, four surgeries, six weeks of radiation,
one car crash.

I am the woman down the street
who walks with a cane.

My student Rosa told me
that I am like a white rose.
I am, well, White, and
I stand for peace and justice and stuff like that.

I am a partner,
a daughter,
a sister and a cousin,
a niece and an auntie,
a teacher and an adventurer,
a stumbler,
a friend.

I am a survivor.
I aspire
to courage and kindness
and right.

I aspire
to wander beyond the boundaries of
Who I am and
Where I am from.

My name is Mary Edwards, and this is my story.

When I was 43 years old, 27 years into my secondary education career, surgeons removed what my lead neurosurgeon called “a big nasty tumor in a bad space.” This tumor, an ependymoma, grew in my brainstem and the fourth ventricle of my brain, already causing dizziness and double-vision and threatening to dam the fluid circulating through my brain.

My surgeons removed this tumor, leaving me with some disabilities and many abilities. Almost three years later, radiation zapped a baby tumor, again in the fourth ventricle. Both tumors and their treatments left me with disabilities, particularly with double-vision, fatigue, and imbalance. Because of these disabilities, I left my education career.

I did not leave that career easily: much of my self-identity and my beliefs about how I could serve this world were wrapped up in that career. When I was unable to do my job as a district literacy specialist adequately and believed that the only reason I wasn’t being fired was that the district feared a law suit, I talked with my radiologist about my need to leave that job and my idea of going to school to get a Masters in Social Work in order to become a therapist for people with life-changing health conditions. (I had looked for and been unable to find a local brain tumor support group that was appropriate for me and a therapist who specialized in working with people with serious health conditions, so I thought I might help address these needs.) I needed this doctor’s support in order to get disability insurance through social security. I needed him to listen to my story and to support me. I didn’t need advice. He was kind: he had cared for me and had probably saved my life and the abilities I still had. He was a technician with a heart, but in this I needed a healer, a person who would truly hear my story.

He tried to tell me a hard truth when he said to me, “School is hard for everyone, even people without disabilities. With your disabilities you will probably not be successful in school, and even if you are, you probably won’t get a job.” After some debate, which continued in a phone conversation, he relented and agreed to let me try. Now, I am at the University of Washington’s School of Social Work, preparing to be a therapist for people with life-changing health conditions.

As a health-science professional, the most important thing to me as your patient is that you hear my story, that you listen to me. In this way, you respect me as a full person, and you transcend your role as a technician: you become a healer. It is important to me that you put away your assumptions as best you can. Transportation and cultural assumptions and finances may be hard for me in ways that you cannot imagine. Ask me about my experience and my needs and listen to me.

There are more people like me than you may think. On the 2010 census, 19% of the population reported that they have disabilities, and over half of those defined their disabilities as “severe.” Of those living with a severe disability, 10% reported living in persistent poverty. The impacts of such disabilities, especially when combined with issues of race, ethnicity, citizenship, sexual orientation and so forth, can be devastating. For example, 60 percent of the King County Jail population has a disability. Furthermore, discrimination can make life even more difficult than the disabilities. One statistic that indicates the extent of discrimination is that, both locally and nationally, the majority of housing discrimination complaints, which were dominated by issues of race until a decade ago, are now primarily about disability discrimination.

If those of us with disabilities are voiceless, we do not need for you to be our voice. We need for you to make room for our voices to be heard, and this needs to happen on an individual and a global scale.

I do not believe that most of the people who discriminate are bad people, being intentionally abusive. I think the stories of those with disabilities are just not known. People living with disabilities, in poverty, in a threatening culture, or with racism need healers. And healers begin by listening.

 So thank you for listening to me, and thank you if take this listening on as your life’s work. I need—we all need—more healers in this world.

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