Category Archives: Barbara Franklin

The Problem With “Think Positive”

Dialectical Materialism and Disability

a praxis for radical healing

Emma Rosenthal

Current popular ideology asserts that positive thinking alone can improve the individual condition.  Unlike Marxist material dialectics, which recognizes social, natural and physical forces on the individual, group, society, and history;  this mandate blames the subject for conditions in her life, going so far as to accuse those who speak honestly about their doubts, frustrations, marginalization, humiliation and discrimination, of “playing the victim.”

But within the tyranny of “positive thinking”  is the  insistence, not that the subject stop being a victim;   (because victimization is always external to the subject!) simply that she become the kind of victim society is more comfortable with: one that doesn’t complain, doesn’t demand and doesn’t speak out!

Like many solutions and analyses not rooted in theories of radical social transformation, this one too, fails to look at illness and disability in the larger social context.   Certainly;  while focusing on positive aspects of life can make even the most unbearable situations better,  the spiritual tyranny (what i call spiritual fascism) of constantly being told to “be positive” is extremely oppressive.

In her last weeks, activist, Barbara Franklin, as she died of incurable cancer, told me she thought she hadn’t been positive enough to fight the disease. This missive “be positive” only added to her stress and self-loathing, as her body was consumed by rogue cells.   This discussion was one of many we had in her final days, around a language of infirmity, which we found we could share with few other people.  

Healing is the process of transformation regardless of the outcome, while cure is the eradication of the condition. The former is always possible, while the latter, may not be. The truth is, we will all die.  There is no positive thinking protocol that can override that fact.  

Illness is its own epic voyage that involves despair as well as revelation.  To limit the process to the narrow realm of “positive thinking”  serves only the status quo and does little to really illuminate the larger and more significant journey.  Nor does it inform the subject in navigating the new landscape that the condition and social obstacles impose.  

Part of the healing process involves an empowering understanding of illness, disease and marginalization. The missive to be positive, makes the illness experience easier on the people around the subject, but may only provide the most superficial of solutions to the actual challenges of healing. And, in as much as the insistence to present an affect that is dishonest, isolating and counter-intuitive, may in fact do great harm. For social transformation to occur, one must speak truth to power. How does one do that if ignoring those forces   (and symptoms?) acting against oneself? And with illness and disability, in our society, the forces outside of the individual (access to health care, attitudes of loved ones, the health care gulag, discrimination, etc.) may be greater than the disease or condition itself. Thinking positive sadly, often results in self-blame and self-loathing. Whereas critical thinking, which doesn’t preclude gratitude, but includes assessment, activism and empowerment is a much greater healer.

Even better, if the subject can connect her inner process of infirmity or disability within the context of larger social constructs and movements for social change; that is, develop an understanding of illness, disability and infirmity within the larger body politic.

More powerful if she can find allies along the way and communities of inclusion that also don’t see illness and disability as personal, individual problems that don’t have a place in the public discourse beyond the scrutiny applied by those not subject to the conditions.

For the subject, the challenge is to seek out and find community and support that doesn’t dismiss the experience behind popular platitudes that lay blame by maintaining the individual nature of the situation;  but rather, can bear witness to the journey and explore and address the social injustices and indignities and provide empowered and informed advocacy.

For activists who have  never addressed these issues within a social context, the challenge is to listen and to advocate, as well as  to understand the radical value of bearing witness; not dismissing the experience, but rather, using it to name, address and define the experience in a language of self-definition, self-determination and empowerment.

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Blog post updates

The following posts have been updated with photo images that just took a little longer to prepare, so I added them today.

https://inbedwithfridakahlo.wordpress.com/2008/04/13/diary-post-the-hardest-work-i-do/

https://inbedwithfridakahlo.wordpress.com/2008/03/20/scooter-walker-and-cane-choosing-the-right-tool-for-the-task-and-time/

Diary Post: The Hardest Work I Do

photo by emma rosenthal

Corners of My Room: photos by emma rosenthal

 

A week before she died, I visited poet Merilyn Murphy at Cedars Sinai hospital’s oncology wing. She lay in her death bed, gasping as cancer  stole her breath. I held her hand. “This is hard work.” I said. She wasn’t able to speak, the tubes that gave her air took away her voice. Her eyes nodded in agreement. Barbara and I had similar conversations during her final days: the hard work, the tedius work of being sick.

Not just illness, all cellular work is invisible and exhausting. When I was pregnant, I conceived in early June, allowing me the entire summer to sleep, which is what I did. I don’t think I’ll ever be that tired again, except on my death bed, which is I hope many, many years off.

There is so much to do. My family as much as any, has it’s own silent drama; the needs of those around me. I keep busy studying photography and graphic art, continue with political activism, reading and writing and more than anything else, am consumed with a home purchase, which requires a lot of attention to detail. There is so much to do before we are owners, comfortable in our new home. Right now we live , the three of us, our books, clothes and work, the cat, the dog, in a space that is just too small.  

I’ve been so busy and most days have good energy. I’ve found a medical and vitamin regimen that seems to give me a measured ability to maintain a reasonable routine, and my reestablishment in the middle class also helps. I think much of what was driving my illness was the stress of not having the resources to take care of my son, Leon or myself. How many people are crushed under the wheel of this horrible machine; how close we came so many times to losing everything.

I still have regular fibromyalgia relapses: periods of time when I can barely get up, have diminished use of arms and legs, or am wracked by systemic pain,  vertigo, brain fog; but these episodes seem to pass after a few hours, or at least within a day.

But the last two weeks were especially difficult and demanding.  I’ve been too tired or sick. The consequences are accumulative. Today was the most difficult day I’ve had in a long time. There is so much to do but most of the time I was barely able to sit up in bed. All the work I couldn’t do today will still be there tomorrow, I’m sure!

I had hoped to get at least enough energy to go to a spa, sit in a hot tub and get a massage, but I couldn’t even do that. Andy is away for the weekend. Leon made me breakfast, boiled some eggs and picked up some chicken at the store before heading out for the day. He offered to stay, but I was okay alone and I let him go.

I spent the day searching the television for something remotely entertaining. How 100 channels can offer so little, is truly amazing. Mao, our cat, came to cuddle and purr. So did our dog, Sally. I surfed the internet for home ideas, researching products, hunting out resources. The home we’re buying will need a lot of work and restoration. (Later on that one!) Much of the day I couldn’t lift my arms or sit up. I slept most of the afternoon.

Andy called between sessions and workshops. He’s in Oakland at the CFT annual convention, presenting two workshops and I would assume making a few motions on the floor. When I’m well we can go through our days at our own paces. But the monotony of respite requires a bit more. It was good to hear his voice.

Lunch was simple: canned soup.

Dinner was also simple, though I finally raised to the occasion and put rice, chicken broth, chicken legs, diced celery and onions in a rice cooker. YUM!

While dinner was cooking I got out of my pajamas, took a shower and put on fresh pajamas—Just one of those days!

It’s like water dripping or watching leaves fall. It’s like a metronome. It’s like doing time, waiting for my release from the gilded cage of my bed. It’s like parole, hoping that this time I won’t be saddled in the custody of my sheets for days, weeks or months.

I’m able to sit up and write for a bit. I have much to do. I hope I am stronger tomorrow.

 

photo (and mosaic table) by emma rosenthal

sickroom: photo (and mosaic table) by emma rosenthal

 

Suddenly Last Summer- Part 4 Barbara’s Death Bed and Camile

Meanwhile:   Barbara’s Death Bed  and “Camile”

 

The Old Paradigm
  1. She must hate the ex.
  2. If she doesn’t hate the ex, she must hate the new partner.
  3. If she doesn’t hate the ex or the new partner, then maybe she wants to get back with the ex.

 

Over the course of the summer we had also visited the spa town of Karlovy Vary in the Czech Republic, returning home for a few weeks before flying out to Colorado to visit family.  While we jettisoned around the country and the world,  our close friend, and Andy’s former partner, Barbara Franklin lay on her death bed.  Andy was Barbara’s power of attorney  for health related matters.  We visited her between trips and stayed in touch with her while we were away.  During this time Barbara was placed in a very difficult position by  “Camile”, who  having completed her marginalization of me,  began a campaign against Andy to try to limit his participation in the planning of an upcoming conference.  She was not having the same results in this pursuit as she had had against me.  Her protestations that “Andy was trying to take away” her “power”, was getting a tepid response and unlike her rumors that I wasn’t really disabled, was diminishing her prestige and credibility.  We had heard snippets of this campaign from other UTLA members, but Barbara’s reports provided us with real insight to the lengths and depravity of her efforts.  Barbara, as I stated in my eulogy to her, was both a Christian and a feminist.  She felt very conflicted by “Camille’s” intervention.

While many people in the union had made it quite clear that they wanted Andy to be with Barbara and not with me, Barbara had always been extremely supportive and respectful of our relationship.  She and I had forged a deep bond, amplified by our common experience with illness as well as our common connection to Andy.  It was a difficult decision for her, to tell us what “Camile” was saying to her, not wanting to gossip, but feeling truly loyal to both of us, and not wanting to be implicated in anything that would be hurtful to us.  She first approached me,  and told me that she was concerned for Andy because of what people were saying;  and then she proceeded to repeat to me, without mentioning names,  the gossip that we had heard “Camile” had been spreading around the Union Hall.  “Oh that’s just “Camile””  I told her, which she quickly confirmed.

The next report we got was that “Camile”, unable to bond with Barbara in the campaign against Barbara’s  former partner,  had repeated to Barbara the lies about me that she had been spreading for years.  I assume she mistakenly decided that if Barbara didn’t hate her ex, in rivalry, she would hate her ex’s partner.

Now not only doesn’t a woman on her death bed need to be burdened with these matters, but what good could come from forging divisions between Barbara and the partner of the person responsible for her medical advocacy?  Fortunately instead of reacting to these reports, Barbara again chose to report them to us.  Had she or I fallen for these petty and ancient paradigms of female rivalry it would have put her medical care in grave danger.

Not able to forge splits between Barbara and Andy, or Barbara and me, “Camile” attempted a third approach:  try to get Barbara and Andy together.  “Camile” returned from Berlin, jubilant in her coup against me and reporting it to Barbara boasted that when Andy returned to the conference without me, everyone cheered for him, adding that Andy had broken with me in Berlin.  “Oh nonsense” Barbara reported saying, “They’re in Colorado together right now.” 

Every year UTLA has a retreat at a resort in the Palm Springs area.  UTLA Vice President, Julie Washington, who, after Berlin,  I suspect,  may have been involved in this campaign with more than silent complicity,  and feigned concern for Andy’s position within the union, invited Barbara to attend as her guest. Barbara reported to us that on one night after midnight, a drunken “Camile” came to Barbara’s hotel room to “check on her” and to ask questions about Andy and myself.

Barbara died only two months later, physically the shell of the six foot tall woman she had been.  We had shared our frustrations with the patronizing support given to her in her illness by the same people who had been so ruthless with me.  Regardless of whatever agenda or issue “Camile” had with me, what excuse is there for the pressures and intrusions placed on Barbara in her final days, hiding under the guise of friendship, to manipulate someone so frail for one’s own depravity?

Barbara had offered to confront “Camile” but we suggested that she refrain, concerned that perhaps the same vindictiveness directed at me, might be brought down upon Barbara.

Prior to this event, Barbara had been “honored” as woman of the year, by the Women’s Committee of UTLA.  Speaker after speaker referred to Barbara as sweet.  President Duffy stated “Barbara sweet Barbara.  What can I say about Barbara.”  And then proceeded to talk about himself and his leadership, referring briefly to his wife as president of their home.  It was like a time warp to the 1950’s!  When we left the event, I told Andy I hoped she hadn’t noticed the patronizing treatment, as each speaker struggled to find something to say to a dying woman, not able to really recognize her for her strengths and accomplishments.

Of course Barbara noticed the narrow, shallow honors bestowed upon her; their pity prize, for a woman who was indeed deserving of the prize in her own right.  “I’m not sweet.  What do they mean I’m sweet? ”  She said to me later.  Sweet or not, what man would ever be awarded the sweetness prize!?? 

But this is no doubt, the two edged sword of disability discrimination within the union; the syrupy, patronizing “love” and “adoration”  showered on Barbara, or the brutal attacks inflicted on me.  Each of us, set in our good gimp, bad gimp; real gimp, false gimp, paradigm:  limited, disempowered and regardless of the occupancy of the space around us; terribly alone. 

There is no justice in pity.  There is only justice in voice, in empowerment, in real solidarity based on a true understanding of our common humanity.

Barbara Franklin: Sister Courage 1950-2007

On Wednesday October 24, 2007, Andy Griggs, my partner, issued the following statement:

Barbara Franklin, union activist and one of last year’s recipients of the UTLA Woman of the Year Award, passed away peacefully Tuesday afternoon, with her daughter, Amelia, and a few friends at her side. Many of you may know that Barbara had been waging a valiant fight against cancer over the past 2 1/2 years….
Barbara’s 18 years in the classroom, and a few years in a teacher release working with the Career Ladder Program at Beaudry, proved her dedication to education work, and the children whose lives she touched. Her work as a chapter chair, CTA State Council Rep, UTLA House member, NEA RA delegate, WHO award recipient, Women’s Committee chair, and member of the Elections Committee, showed her dedication to justice and concern for her fellow teachers and colleagues.
She will be missed.
—-Andy Griggs

Barbara Franklin: Sister Courage
1950-2007

By Emma Rosenthal

On Tuesday September 23 2007, educator and human rights activist Barbara Franklin, at the age of 57, passed away after a long battle with cancer.  She died at home in the arms of her nineteen year old daughter, Amelia and the company of a few close friends.

Ours was a short friendship, slow to start.  Barbara was the former partner of my life partner, Andy Griggs, with whom she had maintained a strong and significant friendship.  As a feminist, like Barbara, I had long ago discarded the frivolous, dangerous enmity that keeps women divided. But in the past I had been hurt by women who still held onto the patriarchal paradigm of female rivalry.  So at first, while never opposing Andy’s friendship with her, I kept my distance.  Even without hesitancy, these relationships require time, which we didn’t have.   They cannot develop with the intensity of other familiars.  Care must be taken to find what subjects can be broached, where feelings are tender, where boundaries are drawn.  So many forces and social influences push against these connections.  There had been much pressure on Barbara not to be close to me.  Our bond was the product of her courage.  I was much meeker than she.  It was her phone calls, her invitations at the beginning.  She welcomed me into Andy’s life and into hers. Slowly I grew to trust her.  When her illness emerged, Barbara asked Andy to play a significant role in assisting with her care. He checked with me before taking on such a commitment.   “Let Barbara know that she’s family.”  I told him. How much more difficult her final years would have been if either of us had succumbed to traditional and petty rivalries.

Barbara had several close friends and a large circle of co-workers, fellow church members and union activists who loved her very much, were very concerned with her condition and who assisted heroically her last few years. But I don’t attempt a conventional eulogy of civic life and political connection. While we are both rather public women linked by a very public man, Barbara and I encompassed the realm of experience considered to be private and individual. “The personal is political”  “Be the change you want to see in the world.”  Our friendship, mostly over the phone and at her bedside, challenged old paradigms of human relationship and interaction. Fueled by her courage and our collective vision, we created space for beauty and transformation.

Barbara was a Christian and a feminist who knew deeply the significance of sisterhood and what it means to truly love, in all of its complexities and demands.   These were guiding forces in her life, the map of who she was, what she valued and what fueled her courage.

After she was diagnosed with cancer, she struggled with the limitations it imposed upon her, the demands it made, the challenges to her understanding of self. We live in a society of great divisions especially around illness and disability.  The sick are hidden; barriers to inclusion both physical and social are built high and wide.  So, few know the language of illness: what to say, when simply to be present, to bear witness.  Platitude and pity can be deep poisons.  We entered a strange sorority together, with its own set of secrets and pledges.

We talked about our trees, the ones outside each of our bedroom windows.  To people who are bedridden, trees are a reminder of vitality.  From our beds they keep us company.  Mine was a pomegranate; hers, a jacaranda. Time is marked in the budding and fall of each leaf, the emergence of flowers, fruit and seeds, the animals that visit, the light that passes, diffused through translucent leaves.

I witnessed her suffer the gulag that is the American health care system, (despite the “luxury” and “privilege” of insurance.)  It was very painful to watch her struggle within this system while fighting for her life, so aware that every stressor fed the cancer.  At one facility, transported at four in the afternoon but made to wait, she was denied food. Finally, at 8 pm, when she asked for dinner they had accused her of arriving after the meal had been served.  (But for Andy bringing her a meal, she would not have eaten that night.)  In another facility she witnessed horrible screams, neglect and abuse. In such a place, water and ice were precious commodities and had to be requested with care, so as not to offend those upon whom she depended. Because of these indignities, and the lack of understanding, there is much terror with illness:  great isolation in a society that feels that such matters are too expensive, a personal responsibility or (blame the victim) the result of negative thinking, hypochondria or personal choice.

Her employer, the Los Angeles Unified School District, was no better; withholding her salary and donated sick leave on technicalities that took weeks to sort out, applying stressors to a situation in which they were clearly contraindicated.  LAUSD has a horrid track record when it comes to the human rights of its employees with disabilities and illness, often forcing dedicated educators into retirement rather than providing support and accommodations.  I was relieved when she opted to retire; an inevitable decision under the circumstances, though I believe for her it was, as it is for many, a harbinger of defeat.

For someone so ill, the smallest tasks take courage: making a phone call, going out to lunch, telling someone “now isn’t a good time.” Lying in bed is tedious, solitary work.   To have to measure life in such small accomplishments; such glaring simplicities, can be daunting. I never saw her fall into bitterness or resentment for what was being taken from her.  Though we did visit despair together and we were both overwhelmed with the reactions our respective illnesses evoked: many of the same people who have resented my disability, pitied her.  Two sides of the same coin: the expectations of behavior, the obligation of the one afflicted to make the rest of society comfortable, the insistence of others that they know what is best –without consideration or consultation– the loneliness that comes when one is reduced to one’s experience without the opportunity to define it for oneself.  Always compassionate; on her deathbed, racked with pain and gasping for breath, she said she thought it had been worse for me. Under the circumstances, her empathy was exceedingly generous. But such comparisons are useless. Hierarchies of suffering only serve to divide. It is what we share that binds us.

A few weeks before she died she told me “I’m alive today, that’s what matters.” And while I do believe that in her final hours she came to make peace with death’s impending inevitability, if she could have stayed with us, she would have, regardless of the terms. On one visit, only days before Barbara died, Melissa, one of her closest friends, offered to bring food from a local deli.  At every suggestion:  macaroni and cheese, Asian chicken salad, mixed sliced fruit, gelato, green bean soup, Barbara became more animated with the anticipation of simple sensory pleasure.

She didn’t want to leave us.  She was waiting for her miracle, and like so many, blamed herself when it did not materialize, that perhaps she had not being positive enough. There is a huge burden placed on people who are ill, to will themselves to wellness. And while this may be possible for some, it is an unfair, cruel expectation for most; a spiritual tyranny, an enforced façade. One cannot be positive about harsh realities and still be honest.

In many cases, it is not the soul that leaves the body but the body that leaves the soul. A strong six-foot tall woman, she couldn’t have weighed more than 80 pounds when she died. The cancer had metastasized to many of her organs.  She was in constant, systemic pain.

Barbara had a softness, often concealing her deeper qualities.  While to many she was “sweet Barbara” to those of us who loved her, this accolade negated her depth, vision and power. It was her courage and wisdom that allowed for our friendship. “I’m so grateful that Andy connected us,” she said to me, one of the last times we spoke, the week she died.

We try to comfort ourselves in platitudes —  “it was her time. “ – “She was ready to go.”  But the truth is that she held on to life fiercely, and we have lost her.  Barbara was love and work and art and passion. And she’s gone.

We meet so few people in our lives with whom we can share our journeys.  I admire so profoundly, her integrity, her hope, her ability to love.  I wish we had had more time.  I will miss her very, very much.

Daily  resurrections

…that your passion may live through its own daily resurrection, and like the phoenix rise above its own ashes. ~Khalil Gibran

seedlings
take hold to delicate earth
words carve images on empty sheets of verse
the house holds musty
the smell of baking bread
there are three new
poems in the world today
that weren’t here before

I wish
I had more strength
the sap sucked from my limbs
by birds of prey
I lie here before the next attack
and prepare my quiet insurrection

each
breath I take is manifesto
against the huge machine
we have yet to dismantle

I wait
for when we can plan the uprising
the birds picking at my heart
taste the bitterness of my tenacity
if you looked into my eyes
you would see clarity

hope
disguised as tears
to fool the vultures