What Lies behind the Wish to Hasten Death?

"We are Time" by Santiago Caruso http://www.santiagocaruso.com.ar/

“We are Time” by Santiago Caruso
http://www.santiagocaruso.com.ar/

By Stephanie Sugars

We can begin with What Lies behind the Wish to Hasten Death? (1)  a basic introduction to the inner workings of those considering “things I really don’t want to live through before I’m dead”.

Pop Quiz:

Where do you or your loved one stand in your intentions toward dying? If you too are considering your own dying, answer the questions for yourself. If your loved one is approaching death, then imagine her/his answer to each statement.

I used a mental toaster slide lever – cool, warm, hot – for each category.

1)  Wish to live
Acceptance of dying

2)  Wish to die.
Not considering hastening death
     — Looking forward to dying
–Hoping that dying happens more quickly
–Desiring to die (but hastening death is not considered)

Considering hastening death
     –Hypothetically considering hastening death (in future, if certain things happen)
–Actually considering hastening death, but at the moment (for moral or other reasons) it is not an option
–Actually considering hastening death, hastening death is a (moral) option

3)  Will to die
–Explicit request
–Refusing life-sustaining support (such as food or treatments) with the intention of hastening death
–Acting towards dying (such as suicide or assisted dying)

How’d you do?

Whether you believe in the “right to die” or the “sanctity of life” or “preservation of life at all costs,” I hope this gave you pause to consider more subtleties than our culture’s polarized debates around euthanasia, the good death.

 http-//www.cuded.com/2013/03/surreal-paintings-by-moki/

Art by Moki.  http-//www.cuded.com/2013/03/surreal-paintings-by-moki/

xox

Advanced Study

The authors of that study of 30 terminally ill patients in Switzerland (2), wrote a longer, fuller exploration of the same group. (3) I feel this is brilliant and important for anyone with or anyone serving those with terminal illness. (study participants died on average 23 days after their “exams”).

The depth of exploration is exciting and the authors’ open minds and hearts are reflecting in their approach to the participants and the study results.

The depth of exploration. T he authors seem to have open minds and hearts with their patients/study subjects. Their openness extends to their study results.

Here’s an excerpt:

Meanings of wish-to-die statements (open list):

A wish to die can be a wish

1. To allow a life-ending process to take its course

2. To let death put an end to severe suffering

3. To end a situation that is seen as an unreasonable demand

4. To spare others from the burden of oneself

5. To preserve self-determination in the last moments of life

6. To end a life that is now without value

7. To move on to another reality

8. To be an example to others

9. To not have to wait until death arrives

Take the toaster slide lever quiz on this one too.

from: http://www.thearthole.co.uk/

Graphic by Rob White, from: http://www.thearthole.co.uk/

xox

This is from the article’s conclusion:

Without detailed understanding of the specific intention of a [wish to die] WTD, and without insight into its specific meanings, reasons and functions, it will be difficult to understand what a patient actually wants and why wishing it is important to her or him…caregivers have a triple responsibility: first, to cultivate the skill of active listening; second, to reflect on their own ideas and fears; and, third, to facilitate both the patient’s inner dialogue and discussion of his or her wishes about life and dying.

xox

Dying has changed in my lifetime and it will continue to change. Those with access to extreme medical treatments will have to wrestle with those risks and benefits, while most will continue to be medically underserved. How we die is often a consequence of how we’ve lived.

But dying is not a medical event, it’s a consequence of being alive.  And, in the best of all possible worlds, it’s a communal event.  I’d like to see wise elders who’ve developed the insight and skills to stay present with dying – whether their own or their loved ones.

I’m not afraid of death, but to be there when it happens, the dying itself, well, I’ll need human and divine companionship for that ultimate adventure.

Thank you, dear readers for staying with me through this long discussion. And thank you for reflecting on lessons from the dying.

Oh, your final exam? The next deaths in your life!

My study tips – show up, pay attention, be open to the mystery.

Head for the light!

xox

The Five Remembrances

* I am of the nature to grow old. I cannot escape growing old.

* I am of the nature to have ill health. I cannot escape having ill health.

* I am of the nature to die. I cannot escape death.

* All that is dear to me and everyone I love are of the nature of change. I cannot escape being separated from them.

* My deeds are my closest companions. I am the beneficiary of my deeds. My deeds are the ground on which I stand.

References:

Painting by Catrin Arno.  http://www.redbubble.com/people/catrinarno/portfolio

Painting by Catrin Arno. http://www.redbubble.com/people/catrinarno/portfolio

(1) What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

a free full text article

 

(2) Intentions in wishes to die: analysis and a typology–a report of 30 qualitative case studies of terminally ill cancerpatients in palliative care.

a free full text article

(3) What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.

a free full text article

+++++++

This article first appeared in a slightly different form on Stephanie Sugars’ LifeLine Blog.  It’s an excellent place for thoughtful,  factual and emotion-filled explorations of issues related to chronic illness and dying.

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Physician-Assisted Suicide Debate

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Graphic by WBNS Ch10 T.V.

IS CALIFORNIA NEXT?   Graphic by WBNS Ch10 T.V.

Physician-assisted suicide is in the California news again.  In a flurry of media coverage, Brittany Maynard traveled to Oregon to die.  A  doctor-prescribed suicide bill was introduced in California at the end of January. 

 

Now, a new court case is arguing that terminal patients have a right under the California State Constitution to a doctor-prescribed drug to kill themselves.

 

Marilyn Golden.  Photo by Sacamento Bee

Marilyn Golden. Photo by Sacramento Bee

It’s a good time for a debate.

 

Marilyn Golden, Senior Policy Analyst at the Disability Rights Education and Defense Fund, argues against allowing any authority figure to participate in the death of disabled or other individuals. Golden fought for the Americans with Disabilities Act and is an expert in its application.

 

She has represented the disability community in many debates and dialogues opposing the legalization of assisted suicide and euthanasia, authored articles explaining the issue, and worked to defeat assisted suicide legislation in Hawaii, Vermont, and California. None of these bills have passed.

 

George Eighmey

George Eighmey

George Eighmey, J.D., Vice President of the Death with Dignity National Center, maintains that it is a human right to have control of our own death, with assistance from those who normally help us in the medical world.  

He supported Oregon’s right-to-die law as a state legislator in 1997 and again as executive director of Compassion in Dying of Oregon (which later became Compassion & Choices of Oregon.)

 

Listen in as these two national leaders, and host Eddie Ytuarte, consider an issue that is truly one of life and death.

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Mission statement

Pushing Limits is produced at KPFA radio in Berkeley, California, by a collective of unpaid staff members. It airs the 1st, 3rd and 5th Friday of each month at from 2:30-3 pm
from KPFA radio, 94.1 fm. Collective members are people with disabilities.

Our mission is to produce a radio program by people with disabilities that reflects the culture and thought of people  with disabilities in the Bay Area and beyond.  We are a
proud part of the disability rights movement and approach our program from the left side of the political dial.  Our guests are almost exclusively people with disabilities because we
are generally the most expert people on the issues of our lives.  

Pushing Limits began airing on KPFA in October of 2003.  Our topics range from personal stories about individual disabilities to national and international political and policy
questions.  We analyze our problems, voice our outrage, celebrate our strength, and spend a fair amount of time laughing.

To learn more about what we do, go to our website and browse the archives (since 2009).

www.pushinglimits.i941.net

Contact us:
(510) 848-6767 ex 636
pushinglimits@kpfa.org

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Police Violence and Disability

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DJ Quad

DJ Quad

In the consistent violent incidents between people with disabilities (often non-white) and police, the losers are almost always our disabled community members.  This week, we’ll be joined by:

Jesse (DJ Quad) Morin, a Los Angeles area DJ, performer and producer whose group 5th Battalion has produced three CDs; and

Emmitt Thrower, a producer, director, actor, playwright and videographer, who is the CEO and Founder of Wabi Sabi Productions in New York.

These two men are producing a documentary in collaboration with Leroy F. Moore Jr. about these issues.   As you can see on their website, “Where Is Hope” these are men with a lot to say about race, police actions and disability activism.

Emmitt Thrower

Emmitt Thrower

It’s not unusual for friends and family to call the police when someone with a mental disability behaves in a way they cannot cope with.  It’s not unusual that the person they are trying to help is shot and even killed. 

It’s not unusual that a deaf or autistic person is shot because they cannot understand or respond to police commands.  People with cerebral palsy are treated as drunks and homeless people who live with disabilities are double or triple at risk for police harassment.

Logo for "Where is Hope"

Logo for “Where is Hope”

How can we raise the issue of disability-related police violence without diminishing the outrage we feel at deaths which are solely race-based?  Tune in for this important discussion.

Hosted by Eddie Ytuarte and Adrienne Lauby.

CORRECTION:  In this program, Adrienne said that the San Francisco demonstrators laid on the ground for four minutes in honor of the four minutes Michael Brown laid on the ground (and 11 minutes to commemorate the 11 times Michael Brown said, “I can’t breathe.”)  Michael Brown laid on the ground for four hours before his body was taken to the morgue, not four minutes.  We apologize for this mistake.

 

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Posted in Activism, Adrienne Lauby, Disability Justice, Eddie Ytuarte, Mental Disability, Music, Protest, Race | Tagged , , | | Leave a comment

Poetry and Prose by Barbara Ruth

 

A young Barbara Ruth, (Holding "Army of Lovers" sign) with Kathy Hogan and Paola Bacchetta at Philadelphia City Hall protest.

A young Barbara Ruth, (holding “Army of Lovers” sign) with Kathy Hogan and Paola Bacchetta at Philadelphia City Hall protest.  1975

Listen, 29 min

Barbara Ruth visits Pushing Limits with poetry and prose. Barbara Ruth is a long-time Native American, Jewish disability activist, NeuroQueer, poet, writer, musician and photographer.

Barbara Ruth’s writing travels from lush erotic images to the nitty-gritty of relationships, all seen through her sharp political lens.  She’s a woman who knows her way around words, who sprinkles the pain with laughter and opens us to new ways of looking at our lives.

With music interludes from North Coast by Nicole Milner.

Barbara Ruth

Barbara Ruth

Barbara Ruth’s work will appear in Memoir: Dispatches from Lesbian Nation in 2015 and is available in Smash the Church; Smash the State; Writings from the Early Days of Gay Liberation, edited by Tommy Aviocolli Mecca from City Lights Books.

More from Barbara Ruth:
Bar Sinistre from Postcard Poems and Prose.
White Woman, Age 53 from NeuroQueer.
Poem to Change the World from Barking Sycamores.

Produced and hosted by Adrienne Lauby.  Audio editing by Sheela Gunn-Cushman.

 
 
 
Original Air Date: January 2, 2015
 

 

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Visual Artists with Disabilities and Voice Augmentation Tools

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Vanessa Castro and her 'Salsa Shoe' Painting

Vanessa Castro and her ‘Salsa Shoe’ Painting

Vanessa Castro and Tamar Mag Raine, visual artists with disabilities, talk about their paintings, assemblages, mosaics and other work.

 

They are two of the five artists with disabilities who are participating in the KPFA Crafts Fair, Dec. 20-21 in Richmond, California.  Keep reading for the names of the other artists and links to their websites.

Tamar Mag Raine

Tamar Mag Raine

The artists are assisted by two non-profit organizations that assist artists with developmental disabilities, Alchemia and Casa Allegra

 

Tamar Mag Raine is assisted by Lauren Hiltebeitel who uses a technique called echoing to translate her speech.  Her business manager, Meghan Dunn, was also on hand to talk about Casa Allegra’s program for hopeful entrepreneurs living with disabilities.

 

Mia Brown of Downtown Mia Brown, Julia Pozgai of Pansy Creations, and Day Marrow, three other artists with disabilities, will also be offering their work for sale at the KPFA Crafts Fair.

Then the ever-stylish Lateef Mcleod shows up to talk about his Alternative and Augmentative Communication (ACC) device.  He demonstrates what it is like to order a pizza with one of these marvelous pieces of technology.    This segment was originally produced for International Media Project / Making Contact, one of our sister programs on KPFA.  Lateef Mcleod spent time in their studios as a storytelling fellow earlier this year.

Lateef Mclead has been our guest before.  You can hear him discuss race and disability here and here.  He also read a poem for our mini-literary festival here.

Mary Berg

Mary Berg

 

Mary Berg, long-time music producer and host of Sunday morning’s “Musical Offering” of classical music died in her Berkeley home late last week.  We offer a tribute with some details about her late-life disability.

 

Finally, here’s a treat for you on-line readers.  A photo of the beautiful mosaic which covers a small wall in Tamar Mag Raines work room. 

The Joy of Leaves by Tamar Mag Raine.  Polymer on wood. Over 350 individual leaves, each one different in color and pattern.

This program was produced and hosted by Adrienne Lauby, with production assistance from Doyle Saylor and Shelley Berman.

 Original air date: December 5, 2014
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The ADA Legacy Bus Rolls On!

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Justin Dart on the mic.

Justin Dart on the microphone

As the Magna Carta rounds the corner toward its 800th year of existence, The Americans with Disabilities Act, the ADA, (a mere babe of almost 25 years) will celebrate its birth as well.  

Photographer Tom Olin has been with those who wrote, supported and fought for the ADA since before its historic birth.  If a picture is worth a thousand words, then Olin is eloquent indeed.

When the ADA Legacy Bus and its small crew stopped in Hayward, California this week, Pushing Limits’ producer Sheela Gunn-Cushman captured the moment.  Listen for interviews with Alameda County Supervisor Richard Valle, David Korth, Damary Bustos, Dorene Giacopini, Sheri Burns and others.

The ADA Legacy bus will also be at the Abilities Expo this weekend, Nov. 22-23, in San Jose.  For the Jan. – July 2015 tour stops, click here.

Produced and hosted by Sheela Gunn-Cushman and Adrienne Lauby.

Bus 2014

Air date: November 21, 2014
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Seniors, Disability and Action

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The Children’s March: A Demonstration in Support of the Domestic Workers Bill. (Left to right) Dorothy Tegeler (Hand in Hand organizer), unknown, Nicole Brown-Booker, Jessica Lehman, Lateef McLeod, Sascha Bitter.

The Children’s March: A Demonstration in Support of the Domestic Workers Bill. (Left to right) Dorothy Tegeler (Hand in Hand organizer), unknown, Nicole Brown-Booker, Jessica Lehman, Lateef McLeod, Sascha Bitter.

Eddie Ytuarte speaks to Jessica Lehman, executive director of Seniors and Disability Action in San Francisco about the intersection of the disability community and the senior communities.

 

 

 

Ms Lehman is a strong disability activist and this wide-ranging conversation will discuss such topics as In Home Support Services (IHSS), what older folks and people with disabilities have in common, labor unions, and the outlook for disabled activism.

Jessica Lehman (R) with Alice Wong

Jessica Lehman (R) with Alice Wong

 

How about that aborted effort by SEIU to get its IHSS training initiative on the California ballot? What happened to that?!!?

 

 

 Listen in for the answer to this and other questions.

Jessica Lehman suited up for a power soccer game with her team, Kryptonite Pride.  Lehman played with the World Cup Winning national team in 2007. (George Lavender/OAG)

Jessica Lehman suited up for a power soccer game with her team, Kryptonite Pride. Lehman played with the World Cup Winning national team in 2007. (George Lavender/OAG)

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True-to-Life Horror Stories

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theater w chairOn Halloween people go out and about wearing zombie-ghost-vampire costumes, but the disability community knows the true-to-life reality of terror.  In this program, we invited callers to tell stories of medical mistakes, bone-rattling trauma and nightmare drugs.

We also talk to Larry Hall, a homeless advocate in Santa Rosa, about “The Day of the Homeless Dead,” a procession honoring the many who have died unsheltered and alone in Sonoma County.

The veil between the worlds is thin as the Day of the Dead slowly emerges.  Today, we honor the experience of homeless deaths and our many horror stories.  

Sheela Gunn-Cushman, Shelley Berman and Adrienne Lauby led the parade of specters.

Original Air Date  10-31-14

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Posted in Adrienne Lauby, Call In Program, Community, Sheela Gunn Cushman, Shelley Berman, Story Telling - Disability | Tagged | | Leave a comment

Getting Credit for Buying Toothpaste

By Jacob Lesner-Buxton

Jacob Lesnor-Buxton

Jacob Lesnor-Buxton

Yesterday, I had a first in my life. It happened at exactly 9:10 AM and about 35 people participated in the occasion. At that point in time I received a standing ovation for, well, for just being me.

I didn’t discover the cure for cancer or land a major account for my job. I didn’t track my girlfriend down at the airport and beg her to marry me instead of moving to Paris. I didn’t even make a great omelet for my roommates. Instead, all I did was make my usual thirty-second speech which includes my name, agency, and what services we offer. I must make this speech 8 times a week in public. However, on this particular occasion — a middle school career day— the audience stood and applauded.

The ovation wasn’t from the students. Instead, it was given by the other professionals in the room. We were all hanging out before we went to talk to students, going around the room, talking about our jobs. Lo and behold, after my presentation I received a loud round of applause. Neither Mark the landscaper nor Sally the banker were so honored. Minutes later I was introduced to an English class by another career day speaker who called me an inspiration. This guy met me a few minutes before, and already he’s using the “I” word. I laughed and thought about telling the students that I was a ambassador of the Cuban Government sent to Santa Barbara to start a Marxist revolution. How inspiring would I be then!

However, I am on my best behavior; and did the normal spiel about my background and job, mixing in a few details about cheating on a few high school spelling tests, and about my arrest record for protest. Apparently this didn’t make me less inspiring. Do I need to tell them about my preference to smoke a little medicinal stuff on a summer night, or my trips to convenience store to buy Playboy, to get them to stop finding me inspirational?

If I had shouted out all my vices, I may have been kicked off campus, but my tale of working a 9-5 job made me seem super-human to them (though I know lots of people with disabilities who do the same thing). It’s kind of scary to hear people say that I am helping them see humanity in a new way. It’s scary to think that I might be able to open someone’s heart in 5 minutes. What if I had never met them. Would their hearts remain closed? Would they remain callous towards other people?

My guess is no, that you and a lot of folks are wonderful people with big hearts offering me a compliment. But your flattery puts a hell of a lot on my shoulders. You set a standard for me that I have to live up to. What if you saw me at a bar drinking margaritas and talking like a sailor with friends downtown — would you be disappointed in me then?

Feedback cartoonAlong with this “hero worship,” I don’t understand why people expect me to be interested in hearing about how their uncle or cousin works for Special Olympics, or how they volunteer with Best Buddies every weekend. Don’t get me wrong, I love hearing about other experiences with disabilities, but I don’t need to hear these stories to know that someone’s a good person. I am not asking for the “story” about how you identify with the community in every “small talk” conversation — we can talk about the weather too.

Another thing I don’t understand is when people tell me how glad they are that I don’t feel sorry for myself. Most people with disabilities I know aren’t the “woe is me” kind. I wonder if the people they’re talking about as “feeling sorry” for themselves are actually the people who are fighting the evils of this capitalist society every day. I guess I failed in my presentations yesterday to expose my true socialist tendencies. I need to work harder next time so people will stop saying ‘Jacob is an inspiration” and instead say, “Jacob is another liberal nut job from San Francisco, but we better watch out because he’s a damn good advocate ”

I was so tired from being called a damn inspiration that day that I found myself pining to be back in my office getting a good lecture from my boss. Surely a report I submitted had too many typos; or perhaps I had contacted a community person whom I shouldn’t have for some advice; or maybe I was throwing my ego around a bit too much. Now I think highly of my boss and hate to disappoint her, but i was ready to be brought down from that inspirational high to the happy medium of critique and praise that comes with my job.

The day before I got my standing ovation, I received some good-natured ribbing for forgetting to do a job (putting on the music at our organization’s open house). “It wasn’t my fault,” I protested, “I couldn’t find the right password for our computer.”

“Yeah buddy, whatever!“ my co-worker said, “We still have twenty minutes left, and I want to hear classic rock.”

My favorite critique came two months prior when I complained about the bus company not e-mailing me back. “Are you sure you used spell check” the person I was complaining to said. Then she added, “You make so make so many typos sometimes I don’t understand your e-mails at all.”

These critiques help me got better at my job. All the clapping at the event was nice, but it didn’t feel as genuine as that complaint from my co-worker.

I know I sound ungrateful criticizing people who find me inspiring, but I just want to live my life as a person with a disability, who pays his rent, goes the movies and buys toothpaste without people being amazed. I see my job as helping to work for a day when people with disabilities are not ignored by society, but are also not put in the position of being role models. Then again, I probably wouldn’t mind being an inspiration if people who met me were inspired to give $100 to my organization.

10-4-14

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