Category Archives: Bearing Witness

Kathy Running Horse Wells 1957-2010

kathy and i both came into dis-ability together, especially the intolerance within the teachers’ unions for full, dignified inclusion. we both shared the initial shock at the pervasiveness of dis-ability exclusion, ridicule and hostility. i have, we have lost a real sister in the struggle. i loved her so much. i will miss her very very much. perhaps those at this years nea convention, when the mourn for her, can, in her honor, demand the nea convention, at the very least, address the issues of accessibility (and dignity) that have gone ignored for years.

andy griggs, emma rosenthal and kathy wells

A Valiant Sister Warrior’s Crossing

It is with great sadness and love that we share the following message from NEA AI/AN Pacific Regional Director and CIEA President, our brother Clyde Hodge.Dear Brothers and Sisters,(I’ve just checked into Baton Rouge and am writing this as soon as possible.)

It is my very sad duty to inform you that our friend and ally, long time CTA and NEA AI/AN Caucus member and American Indian rights activist Kathy Running Horse Wells crossed over to be with her ancestors today, at about 4:00 PM Pacific daylight Savings Time, today, June 24 2010, at a hospital in the SF Bay Area due to complications from diabetes.

To quote Cheryl Whitney who called to let me know, “CTA and NEA AI/AN caucuses and Union work was her life.” We will miss Kathy and wish she were still with us, but we must celebrate her struggles, battles, and successes in the work she did for NEA, CTA, the AI/AN Caucuses, and the American Indian/Alaska Natives educational community. She was a Strong-hearted Warrior.

I trust you will say a prayer in your own way for the family, friends, and other loved ones Kathy left behind, and please allow yourself a prayer as well.

In sadness and solidarity,

All my Relations,


It is also of note that we share and continue Kathy’s advocacy for disability access and inclusion at the NEA-RA. Kathy shared with Emma Rosenthal and others many times, the humiliation that was typically experienced by union activists with dis-abilities. Tommy Flanagan  CTA/NEA  American Indian/Alaska Native Caucus

ruth and kathy summer 2009

A tale of two inquiries (this is how we do it!)

As if there really were a god, the following invitation ran on my fb feed, just as i was addressing the issue of access at another event.  (see the previous post!)  I asked Yesi if I could publish our dialogue and use her name.  She agreed.  Please note, how, in comparison to the previous post’s example, i made the same inquiry,  in  much the same way, with incredibly different results. Unfortunately the previous post’s example is more often the norm.

When approached by anyone from a marginalized group, who asserts that your actions might be discriminatory,  especially if you have little experience with that area of  marginalization, Yesi demonstrates how to assertively and humbly respond to  such an accusation.

This is textbook, and in my opinion and experience, applies to race, gender issues, colonization, etc.  etc.  etc.

In exile,


Yesi King save the date!

Fundraiser and Website Launch Party!

Location:Self Help Graphics

Time:7:00PM Saturday, July 3rd

Emma Rosenthal it is my understanding that this is not a wheelchair accessible event.

Yesi King oh no emma, it definitely is! self-help graphics is wheelchair accessible! please come, i’d love to meet you in person 🙂

Yesi King i’ve actually updated the event page with that info. my apologies :/

Emma Rosenthal as i recall, the bathroom is not, and unless they installed an elevator, the entire upper floor is not, either. when i brought this up to a board member, i was addressed with hostile indifference, called necia and taken off of her fb list. so if it is physically accessible, it still isn’t dis-ability affirmative. — a very important consideration for pwds because hostility, ridicule and humiliation are more the norm in social environments than not.

Yesi King hmm, i actually haven’t checked out the place in a while, but i will ask. if it isn’t i will be very, very disappointed actually :/ …and i agree with you.

Emma Rosenthal better not say it’s accessible until you confirm. the humiliation and incredible inconvenience of attending an event that isn’t is devastating.

Yesi King good point :/

Emma Rosenthal yesi,  i very much appreciate the openness you have expressed on this issue. usually i am attacked brutally for the mere suggestion. i need a few days to sort things through, but call me and let me know how i can help you make this a fully inclusive event. 818 404 5784

Yesi King hi emma, i definitely will 🙂

Yesi King

Hi Emma.

You said to give you a couple of days to sort this through so I didn’t want to intrude by calling you too soon. So, I opted to send you a message instead. I hope I’m not bothering you.

I’ve read your blog posts (cool blog name btw 🙂 and I’ve really been thinking about the points you have made…and I feel HORRIBLE. You have every right to be upset, you make excellent points, and unfortunately, in order to create change, people have to be put on the spot and be made uncomfortable. I’m very honored to have crossed paths with you.

I’ve asked the people on the team in charge of securing the location about SHG. I haven’t been there in a long time and apparently some things have changed. So, unlike their website and other internet sites about them post, they are NOT wheelchair accessible. The place isn’t two stories; it’s only one story, the upstairs. The bottom spaces apparently don’t belong to SHG. The main part of our event will take place outside but the art gallery will be upstairs :/ According to my friend, SHG just simply has never had enough funds to take on that sort of project and they apparently don’t own the building anymore. They had to sell it a while back. It really SUCKS that the place isn’t accessible for dis-abilities.

Now, this is the context in which the event is being organized: we are not an official org (we are not a non-profit), we do not have an abundance of options for spaces for what we’re trying to pull off, and we do not have funds. We were actually lucky to get the space for free. We just want to raise funds for this website project…because we’re all broke and can’t afford it on our own.

Like I said, I feel horrible…and stupid…and ignorant. The items above are not an excuse. If it was any other situation, this would not be acceptable. What can we do? Please help…we want to make this as inclusive as possible. Forgive my ignorant question, but what exactly do we need to make this inclusive and accessible? I would like to begin making a list asap.

I can’t claim to understand where you are coming from, but I can surely empathize. I really admire you for standing up for this. I think about my son, whom I love more than anything. I wonder how I would feel if he was in a wheel chair, and let me tell you, I’d be PISSED AS HELL if places weren’t accessible to him.

I’m sorry for this. I know what I have to do. I have to ask my friends with whom I am planning this event, to either change the location or find a damn way to raise the funds to accommodate. If they refuse, then I will refuse to be a part of this event. Discrimination is discrimination period.

Thank you Emma,


PS. Not sure which book signing event I will be able to make it to, but I will definitely make it to at least one 🙂

Emma Rosenthal

first of all, be easy on yourself. You’re addressing an issue that is new to you, in a very responsible way. (don’t muck it up with guilt- which is always destructive and rarely serves justice.) for me, your timing is perfect. your interest in very affirming. The reaction you observed in my most recent post, is more typical than we would like. (though this is the first time I’ve actually been accused of being racist and exercising privilege in the context of dis-ability access.) we need to address this, not individually, but as a community.

I tried to think of comparable situations—venues that might be inaccessible to other marginalized groups:

Homes in neighborhoods hostile to certain ethnic groups, or sexual orientations,

a strip club–i can hear the rationale now–“oh lighten up, it’s just fun and for a good cause (baby!)” ,

a venue near a police station or ins station,

certain religious venues.

But disability inclusion presents very unique (physical as well as social) obstacles. it’s why andy and i put out a call to the left to begin the dialogue to set up a protocol and find collective ways to address these issues, with short and long range planning.

Even well funded organizations can’t resolve these questions overnight. Right now we’re struggling with what to do if someone requests sign language interpretation. We haven’t found an affordable answer yet. Hopefully we will before the situation presents itself.

The last time I was at SHG they did have use of the first floor. Some possible “solutions” are to see if that space can be made available for the event. Since your event is outside, see if (this is a long shot) there is a way to make the artwork accessible, there. One (not so optimal solution, could be a video feed of the gallery. –-not okay as a long term solution, but certainly an improvement. If the bathroom is not accessible, an accessible porta potty costs a little more than $100 to rent. And our newest strategy is to see if a neighboring business has an accessible restroom that can be used. That’s what we’re doing at Imix in Eagle Rock. Their restroom is not accessible, but a coffeehouse nearby is. In establishing this, we instigated a dialogue that may change Imix’ approach to this issue in the future, and may have also fostered relationships between the two businesses.

I want to draw up a list of accessible venues, look into ways groups can collaborate, pool resources, share equipment. (We have a portable ramp, btw.) Imagine, again the community and working relationships this would foster – the benefit beyond addressing the initial issue.

if you can’t make the event accessible, and you can’t find an alternative venue, you can weigh the decision to have or not have the event, or to put it off until you can find a space that can meet your needs.

If you do decide to have the event, while it is never acceptable to discriminate, a statement that clearly delineates the access, the options for pwds, is essential in not wasting the time of pwds, who know that if it is not stated, not only is the event probably inaccessible physically, but it is probably not socially accessible either.—in other words, even if the space is structurally accessible, once it is full of people and materials, the likelihood that it will be a positive and safe space for pwds, is less likely. On the other hand, if the access is spelled out, it gives pwds a choice, and it also indicates that the issue is one of which the host is aware. (though I am starting to observe that this is being used more as a copout than a real solution. The two events this weekend that included such statements were not events where i would have felt welcomed and they involved organizations that had promised such misunderstandings and oversights would not happen in the future. Instead, what seems to be their position, is that it is okay to discriminate some of the time, as long as an advisory is stated.) it reminds me of the signs from the 1950s- “no dogs, no jews no coloreds.” –Good to know, but not exactly a revolutionary politic.

I hope this helps. It’s not a complete solution. But it’s a start.

Yesi, with your permission, I would like to publish our dialogue on the blog, with or without (preferably with) your real name. I think it is an excellent example of how to begin to address this issue and the appropriate way to address any dialogue on privilege, inclusion and bigotry.

in solidarity and struggle, for a world with no borders or barriers,


Yesi King

thanks emma…but i tend to live on extremes, it’s something i’m working on 😉

also, i’m sorry but i can’t ignore something when it’s wrong. especially when it’s so blatantly wrong and unjust. i can’t ignore it…and you’re right we do need to address this as a community 🙂

my friend neil actually suggested that we rent a portal potty. so that, we can definitely do…thank you for offering the ramp. i will ask them if it is needed. also, regarding the art gallery, i’m workin on that and waiting for a response. oooh and i have a student who knows sign language so i hope she can help out 🙂

also, of course you can publish this dialogue. it IS an excellent example of how to address this issue, creating change, connections, and showing that it can be done 🙂


Emma Rosenthal

i appreciate what you are saying. i’m the same way when it comes to oppression and marginalization, though i try to temper my expectations in a less rigid praxis, understanding the contradictions and constraints we live with under capitalism, white supremacy, patriarchy. i do know, with dis-ability, the social barriers are more significant than the physical ones. neither of the two events this last week, had obstacles to my participation. i can climb a few steps. but i know better to go into such a situation when it is full of people who have no understanding, experience, and awareness of dis-ability rights and solidarity. the hostility, indifference, resentment, the use of space, the way people move around, would have been very difficult and perhaps dangerous for a pwd. the problem with accommodationism, is it just doesn’t work. it never serves the one who is accommodating the marginalization– not in race, gender, colonization nor with dis-ability. it always ends up serving the marginalizer. it always obscures the marginalization. it always demands more of the person who faces exclusion when the real onus is on the entity that is the perpetrator of the marginalization.


keywords: anatomy of a blacklisting

Renewing my Soul

Emotional Spring Cleaning

Affirming core principles through Kabala.

The last few years have been very hard on me. I am amazed at the extent of my marginalization as a person with a dis-ability, and as an activist who dares to speak up for Palestinian human rights.  The nexus of the two has had an enormous impact on my life.  Almost every time I leave my home I am exposed humiliating and even dangerous situations.  I have had to limit my contact with the outside world.  Pwds (people with dis-abilities) don’t have a ghetto to fall back into (except the  gulag of healthcare facilities and skid row.) We can’t gain comfort in the exclusivity of our exclusion. We make due in the world of those who may some day join us in this marginalized identity, by illness or accident, (serving as a deadly reminder of their own vulnerability).  Andy and I are building a space where I, where we can work, where people can gather, where we can hope to develop a community based on values other than moral relativism, cronyism, opportunism and greed; though it’s hard to go against the grain of the pervading culture. Fueled by the motion picture industry, this is a tit for tat (and a tit and ass) city, and it filters down into almost every relationship.  “What can you do for me?”

This year has been especially devastating for me.  Even limiting my interactions to my own home– an amazing compound that includes supportive neighbors, a small urban farm, a work studio, a gathering place to build connections, I am still constantly hit with messages of marginalization, usually in emails attacking my body politic, defending privilege, making excuses for exclusive events that don’t consider the input or inclusion of pwds as important, essential or valuable.

For middle class activists who have only minimally suffered the ravages of capitalism (if capitalism isn’t a boot on your throat, it’s all theory) there is great impatience.  Friends think I should be “over” this.  Since it isn’t “over”, since the blacklisting and the ridicule and exclusion continues, this demand demonstrates their own intolerance, their own need to see oppression as something that happens somewhere else to someone else, not someone like them.  Their activism is more about assuaging their guilt in measured bursts that don’t challenge their privilege, than about a real battle of life and death. It shows their own inability to understand that for many people, life is a series of events for which there may be little or no escape.  Tragedy isn’t the occasional experience, it IS the experience.  Their activism is based on charity, not solidarity.  They fear and reject seeing any connection to their own lives, the lives they attempt to defend. In my case, and it isn’t just my case, tragedy has revolved around loss of my job due to dis-crimination, the poverty and isolation of single parenthood, the marginalization of my own illness while raising a child with a serious condition, the brutality of the health insurance and “care” system, the social service industry, the educational establishment, lack of services, lack of respect for single mothers, discrimination against my gay, Jewish Mexican son, political marginalization, dis-ability discrimination,death threats, vandalism, sabotage etc. etc. etc.  This isn’t a reality one simply snaps out of.  I can’t just show up at a dinner party or a social or even a political event and discuss these matters as if they were happening to someone else, far away. I can’t avoid bleeding on fine linen.  For me, the death spiral of the capitalist system isn’t theory, and it isn’t temporary.

I find myself in the  grip of  a profound depression, afraid for the end of the world, the incredible loss of life  of those who are expendable to a brutal machine that needs our labor and our minds less and less.  Somedays I wish I could stop breathing. My grief is very deep.  I have an intractable hopelessness.  AND MOST OF ALL, I AM TIRED OF PLATITUDES.  Telling people to “think positive” when they are under attack and in the midst of a terrible reality is actually a very cruel and negative act.  Though it is much easier than actually bearing witness, listening, and taking appropriate action.

Today I woke up, bathing in despair,  thinking, “something has got to give.”  Somewhere in all of  this, there  has to be some salvation.  I hope that I can at least break from my own complicity in the attacks against me and rise up from under my own self doubt, hatred and demoralization.

Counting the Omer

Starting on the second day of Passover, it is tradition and enter into a   49 day period of study of the principles of Kabala. *1 Keter-“Crown” 2 Chochmah-“Wisdom”3 Binah-“Understanding”4 Chesed-“Kindness”
6 Tiferet-“Beauty”
(Secondary emotions:)
7 Netzach-“Victory”
8 Hod-“Splendor”
9 Yesod-“Foundation”
(Vessel to bring action:)
10 Malchut-“Kingship”

So here I am, at a point where I am personally, politically and spiritually mandated to do exactly what is simultaneously indicated by the Hebrew calendar. I appreciate such sinchronicity.  It is rare in my life.

Of course, there remains my own rebelliousness.  Study of Kabala is forbidden to those under the age of 44, and I started studying Kabala when I was 40. It is also not traditional for women to study Kabala.  But unlike many of the Mosaic laws I have broken, I don’t think this one is a capital crime, so there is that!!!  (The religious enforcers may put down their stones at least on this account.)

A few years ago I underwent a deep study of Kabala.  Using my own drawings and writings as meditations,  I published those writings and drawings on this blog.  Feel free to join me and meditate with me on these principles.   I am very lost.  very very lost.  Help me find my way back to something resembling wholeness.

Day one:  loving kindness in loving kindness:


“Skid Row Types”, “Mental Cases”, “Tough Guys” the Library Cops, and One Retired Teacher in a Wheelchair!


Dis-abled person: n.- A person one is able and entitled to dis, regardless of the standing in society (STANDING!)  or the status of the offending person, without fear of any social consequences.

(from “Emma’s Lexicon”  –a work in progress) 


I went to the city library today and while waiting to check out cds, a young latino man behind me, started calling me “Wierdo, in a wheelchair” “Don’t look at me” “What I said, what I said” and “bitch” and started posing aggressively. He continued this for some time, right in front of the librarian. NO ONE SAID ANYTHING, not even library personnel. Afraid for my safety and offended, I  said to the librarian, “This is hate speech, please call security.” When three public safety officers (the library cops! Did you know L.A. had library cops!!???!!)   arrived, they talked to him (man to man!) and  before even speaking to me,  dismissed him.  As I began to tell my story, they cut me off, and with hostile indifference for my safety, my civil rights  or for what he had said to me, told me they couldn’t do anything because of free speech which apparently includes harassment and hate speech. They told me that they didn’t know what happened since they weren’t there, refused to interview anyone who was, and added that they get all types in the library, including “people from skid row” and  “mental cases.”   They continued to tell me that this sort of thing happened all the time and there was nothing they could do, since they couldn’t arrest him.  

 But there should be some remedy (such as removal from the premises),  other than arresting someone or doing absolutely nothing at all! And regardless of what he said, verbally accosting a total stranger is more than just speech, it is aggressive and threatening.  Furthermore, it can hardly be city policy that people with dis-abilities, along with other protected classes, be required to accept abusive language in the course of accessing public services or working for the city.  I asked the officers, one of whom was Latino and the other two were African-American, “What if I used racist terms toward you?”  one of them asserted that that would be my right, that it was part of his job.  “No it’s not” I told him.  “It would constitute a hostile working environment and it would be wrong, and if I heard someone speaking to you that way,   I would say something.”   

Offended  by their indifference,  I asked them their names. Two of the public safety officers walked away, one muttering, “I’m through here.” I demanded to speak to a superior. and the remaining officer took me to a sergeant, who basically repeated the same policy and was equally reluctant to give me his name.  While I was talking to the sergeant,  Officer “Through Here” interrupted, quite angrily, reprimanding me in front of his supervisor,  as if I were a small child,  stating that he had feelings too and that he walked away to calm down. He stated that I had talked down to him.   The sergeant went on to tell me that they have to deal with knives and guns all the time.  I think he said this to assert how insignificant my complaint was, but it also illuminates how outrageous their reaction to me was, as well:  A retired school teacher in a wheelchair is too much for the library police to handle,  despite all the other “types” they come in contact with every day.  One uppity woman with an ambulatory device explaining the nuance of hostile working conditions, civil rights, harassment and hate speech and asking for names and badge numbers to  three fully armed and uniformed city officers  trained in weapons confiscation, is infuriating and justifies abandonment of  their duty to provide a safe environment for everyone.

 One  would-be witness did come up to me later:   -¿que pasó con ese tipo?  Preguntó (“What happened to that character?  He asked.)  -nada se pasó, -contesté (“nothing“, I replied).  Surprised, he expressed outrage that someone would be allowed to yell insults in the library like that.  

You would think that there would be a code of conduct in the library.  Can one YELL hate speech?  Is it a matter of decibels?  Are the badge wielding, armed, and academy trained (I was later informed) law enforcement personnel of Los Angeles, suddenly more schooled in the civil rights of L.A. youth, (I don’t think so), most of whom are harassed by the police routinely, simply for walking down the street?   than in how to handle assertive women in wheelchairs?  (Apparently!)  Or is it that PWDs have such low status, that we’re fair game everywhere we go?  (And are “skid row types” and “mental cases” less threatening than cripple gurls who have the audacity to take down names and badge numbers?) This is just one more example of the widespread acceptance of dis-ability discrimination!  Teasing me apparently is a right law enforcement is trained to protect,  my protestations, the actual violation, the instigating young man, the apparent victim.  

The sergeant, eventually did give me his name, and did walk me to my car, in response to my concern for my safety, so there was that.  But  he continued to justify the behavior of his officers, even going so far as to state that perhaps they had expected me to take my anger out on them and had reacted in anticipation and that I should consider that.  I told him that that’s where training should come in. –apparently they had been trained to respect “mental  cases”, “skid row types” and “free speech”  but not innocent citizens being harassed  or how to handle articulate women in wheelchairs who have the audacity to assert their rights and have a voice.  Hate speech and harassment should not be tolerated in public spaces.  No one, including PWDs should  be subjected to ridicule and humiliation for simply entering a public facility and such abuses SHOULD be seen as  a security issues. There is no reason to arrest this young man but he should have been told, in front of me, that he can’t speak like that, that he was to let me alone, and if he did not, he would be asked to leave, and his library card revoked.  


Check out the following video– what happens in this video,  happens to PWDs all the time, with not only the same indifference, but with patrons or others (in my case, the library cops)  actually jumping in to take the side of the offender.  Also note what happens when just two people take action— how it changes the entire social dynamic. 

BBC NEWS | Health | Feeling grumpy is good for you

When I “think positive” I get in a lot more trouble, than when I am prepared for the obstacles that may come before me. As a person with a dis-ability (pwd) many obstacles are REAL obstacles. There are also social obstacles. The most humiliating experiences with dis-ability came when I was in the most positive frame of mind.

The constant directive to “think positive” is about conformity, about forcing the individual who may have very real concerns about very real social or personal situations, to behave in a way that makes OTHER people comfortable.

As social activists how can we begin to build a better world if we cannot bear witness to each others’ experiences or discuss unpleasant and tragic events and situations?

BBC NEWS | Health | Feeling grumpy ‘is good for you

Writing in the Present Moment

The last few years have been overwhelming: the purges, death threats, isolation, humiliation, the overall initiation into the marginalization of dis-ability, the shutting down of the server my blogs were on, the reestablishment, post by post, image by image of the entire chronicles, the invasion of our home by 14 armed members of the Los Angeles Police Department, the confiscation of our property, the legal costs, ongoing health problems, the deaths of my father and Barbara Franklin, a close friend, several hospitalizations of my son, moving twice,  finding a place to live, restoring an old house, becoming part of a neighborhood.

I started this blog: “In Bed With Frida Kahlo” to provide resources for other people with dis-abilities (pwds), and to speak to the overall experience of dis-ability; a source of identity and self-recognition for other pwds, and a way of exposing pwods (people without dis-abilities—aka the temporarily able bodied) to the realities of the daily indignities of dis-ability. *

People who know me, know I hate new age-y platitudes. I didn’t always.  I invested time, money, hope, dreams and even my reputation on the illusion that positive thought and following one’s dreams would inevitably bring about a positive solution.  “Do what you love, the money will follow.”  “Follow your bliss” “What would you do if you thought you couldn’t fail? “  In the case of the latter, fail publicly, repeatedly, and to the detriment of my integrity and reputation, not because I intended to let people down, but because my expectations and my belief in that mythology were not in alignment with either my financial or physical realities.

The Annenberg Space for Photography is an amazing space, but thought alone did not create it.  It took the wealth of the Annenberg family and lots of hard work to make a wonderful idea, a reality.  Daily life and its demands and limitations are very different for those with money and those without.  Life moves more slowly for those with fewer resources, slower yet, for those with options limited by both physical and social barriers.

It took two years for Andy and me to make a home together, to finish most, though not all the work on a very old house, that in the L.A. housing market, we barely squeezed into. I started projects, and then found myself overwhelmed with the minutia of life—the daily tasks, the unexpected emergencies, the requisites of responsibility to others, that would interrupt my work and delay responses that events demanded.

So here I am, in the present moment.  Most of the past is behind us. I know that sounds funny, but this month I finally caught up on the finances on quicken: everything is categorized, documented, accounted for.  We can finally really make a budget, plan our future, keep track of spending in the present tense.  It is a huge load off our backs.  The blogs are up to date, for the most part.  I have a place to work, to stack my books on shelves, to file papers for research I’m doing for upcoming essays.

The transition to dis-ability happens faster than I can write.  Hopefully now, the space and time exist to allow me a current response.  Two humiliating events occurred this week,  which is not uncommon for a pwd.  Not uncommon at all!   I hope this weekend to sit down and write my chronicle of the events.  I don’t feel I have years of work looming over me like a tidal wave.

There’s some delay in writing these stories.  It takes me awhile to understand what happened.  There are so many nuances to dis-ability discrimination, trauma, shock. I am also, often too humiliated and ashamed to look at what has happened to me.  I’ve done enough victim advocacy to know the fallacy of that thinking, which helps, but doesn’t remove the stain, stigma or injury, totally.

I also know the risks of writing about dis-ability discrimination—the common assertions-  “What did she do to bring this upon herself?”  “Is she lying?”  “She’s probably just trying to get attention.”  “She must have done something to contribute to the situation.”  “She’s loud and demanding and she got what she deserved.”  I’ve been told all of this, by human rights activists, educators and social service providers, even.

As Audre Lorde said:

“I write for those women who do not speak, for those who do not have a voice because they were so terrified, because we are taught to respect fear more than ourselves. We’ve been taught that silence would save us, but it won’t”

“My silences have not protected me. Your silence will not protect you.”

But the biggest obstacle to writing has been time and the responsibilities of life.  Writing is process, there must be a space, often a ritual, and the muse must be courted.  The drama of the last few years, the unpredictability, the danger, all had to take priority over the reporting of events.  I never wrote about the airline flight attendants who refused to let me use the restroom at the front of the plane, refused to hold my place in line for the bathroom at the back of the plane, while I waited my turn in my seat, instead of standing, and ridiculed and humiliated me as I struggled to reach the back of the plane, while they denied me the use of the airline wheelchair that is mandatory on all flights, forcing me to collapse onto the floor until the line dissipated.  I never had time to write about the numerous social service, educational and health care personnel who openly ridiculed me in front of my son instead of providing the services they were required to provide my family.  I didn’t write about repeatedly humiliating experiences in Whole Foods, and other yoga beautiful establishments, including farmers’ markets, where dis-ability access is denied or impaired because our presence is seen to diminish the cachet of the establishment. I never wrote about the repeatedly miserable experiences I had in theaters, including one theater where, without even an introduction, one employee, after I had found my way to my seat, grabbed my walker (as per theater policy, apparently) because it took up too much space.  (No similar demands were made of tall people for taking up too much space! For pwds, our ambulatory devices are our legs. Without my walker, I would not be able to access the restroom during the performance if need be, or get to the restroom in a timely manner during intermission.  I would have had to wait patiently for this brutal matron to return my legs to me, on her own timeline, on her own accord.)   Unreported were the numerous occasions where Andy would repeat something I had said, to be praised for the great idea, that seemed to go totally unheard when I made the same point, or where I was accused of being rude, and he was praised for being courageous, brave, outspoken. Good gimp gurls must be quiet!!!

And I never wrote about the human rights activist, who yelled at me for running into her with my scooter, when she backed up without looking, and then chastised me for driving inside a public building.

So now I hope to have the time, the space, the clarity to write, in the present time, not catching up with the past, but writing what is happening now, in the life of one crippled gurl guerrilla gimp, out to take over the world, one wheelchair ramp at a time.


*I hyphenate the word, because disability is subjective.  Little people are considered dis-abled, but tall people are considered enhanced.  The deaf community does not, in general recognize deafness as a dis-ability at all.  It really comes down to social values of what is desired, what is rejected and what is normative.   If some people had wings and others didn’t, those without wings would be considered dis-abled.

From the Inside Out Interview with Rita Charon

©2007 Maine Humanities Council Literature & Medicine Humanities at the Heart of Health Care® Synapse ::: Spring 2007 :::

Volume 3, Number 1 Literature & Medicine:

From the Inside Out Interview with Rita Charon :::

bio, by Lizz Sinclair :::

iterature & Medicine: From the Inside Out
Interview with Rita Charon ::: bio, by Lizz Sinclair ::: bio

In Narrative Medicine: Honoring the Stories of Illness, Rita Charon defines narrative medicine as “medicine practiced with… narrative skills of recognition, absorbing, interpreting, and being moved by the stories of illness.” (p.4) As she explains in her writings, it is about listening to another’s stories skillfully and carefully—bearing witness and being present to both another’s experience and one’s own.

Because this is not as easy as it may seem, Charon and her colleagues share their approaches to teaching and developing narrative skills such as close reading, reflective writing and bearing witness in her book, classes and workshops. It was at one of her Narrative Medicine workshops that I had the great privilege to meet Dr. Charon and learn about narrative medicine first hand.

Nourishing Ourselves and Bearing Witness
An Interview with Rita Charon

LS: In your book you write that narrative medicine provides hope that our health care system can become more effective by “recognizing and respecting those afflicted [by disease] and in nourishing those who care for the sick.” Would you elaborate on this?

RC: This is the hope of the entire discipline—that by equipping health care professionals and patients and family care-givers with the wherewithal to meet in discourse, to recognize one another and oneself as one goes through illness, and to be open to one another’s lived experience, we can bridge the divides now separating us and get down to the challenge of either healing or living with illness. It is a far-flung hope that there be, eventually, some sort of equivalence or commonality among us all, sick and well; that we become partners and wayfarers together. See what I mean by positing recognition as the central event? The recognition has to pierce through the differences that currently segregate us away from real contact.

LS: An essay of yours mentioned that by writing narratives, health care professionals can better imagine not only what their patients might be experiencing, but also understand “what they themselves endure in the care of the sick.” I was struck by that sentence. Would you talk a little about how writing can help health care professionals in this way, and how it can (as you say in your recent book), nourish them?

RC: Writing is one of the easiest and most cost-effective methods of exposing the “unthought known,” a brilliant phrase from the work of psychoanalyst Christopher Bollas. We know things that we don’t know we know. We need specialized methods—psychoanalysis, dreaming, and, I suggest, writing—in order to rescue this known from falling prey to boredom, fear, censure, or simply being overlooked. Invariably, when doctors and nurses and social workers write about their patients, they have “aha” moments—“oh, I didn’t know I was afraid of his disease,” or “I want to be like her when I’m dying.” These insights accumulate in the course of sustained writing about practice to let the writer understand the complexity of this interior life as a clinician, to appreciate the bonds formed between us and our patients, and to simply take stock of the magnitude of what it is we do. This is, I think, nourishing, whereas practice without reflection becomes automatic and not unlike starvation.

LS: I was surprised at the willingness of people at the narrative medicine workshop I attended to write about their experiences—do you find that this is generally the case? It seems that writing could be pretty intimidating to those who are not in the habit of writing regularly, especially when writing about one’s feelings and experiences with patients.

RC: When clinicians do this kind of writing in groups and near spontaneously (take out some paper and write, right now, about a patient in your practice whose suffering moves you), writing becomes not a chore or a test but a far more “owned” act. There need not be private stage fright (yes, many persons get anxious with the blank page) when done this way without premeditation and postponement and the like. Something comforting happens when heads bow around a table, and a characteristic silence of plenitude drops upon us. I think we derive some kind of momentum by watching others scribbling away, and no one expects anything polished and finished if you simply dash it off right here. These factors help to explain some of the ease that we typically see in these writing workshops. The other part of the ease is the urge to tell of these meaningful and grave clinical situations that build up inside us, plucking at the sleeves of our attention, queued up to be brooded about.

LS: Are these writings ever shared with colleagues?

RC: We typically ask persons to read aloud what they have written. In our writing seminars that continue over time, many will submit things they have written to various clinical journals and the like. I don’t think the power of the writing exists in the publishing of them, myself, but rather in the doing of them. I have found myself sharing things I or my colleagues write about my patients with either other clinicians caring for that patient or with the patient himself or herself. I think there are vast therapeutic potentials for these texts that we have yet to conceptualize and test.

LS: You sometimes suggest that health care professionals write about an experience from the imagined perspective of a particular patient. How do you know if you’ve gotten it right? What if what you imagined is not the patient’s experience? Do you or any of your students share these with the patients?

RC: The imagining is hypothesis-generating, not hypothesis-testing. That is to say, the act of imagining from a patient’s perspective is done not to find answers, heavens, but to find questions. The next time you see that patient, you will approach him or her with a fresh set of curiosities, hypotheses, ideas about what might have been behind some behavior or comment. And so you will ask. You will enter perhaps a more complex and sustained conversation with the patient than you would have without having imagined and written. I would never think that what I made up was actually true! Oh, dear, no, simply that imagining another is a way of nearing that other.

LS: In your writing and workshops you talk a lot about the importance of bearing witness. Would you explain what you mean by this, and why this is important for health care professionals?

RC: Bearing witness means letting another’s suffering register on you. You recognize the suffering not, right now, for instrumental reasons of fixing it or doing something yourself in response to it. This will come, perhaps, but the fixer or the doer thereby becomes the agent while the sufferer becomes the passive recipient of the fixing or the doing. In bearing witness, we invite the sufferer to be the active agent while we, simply, behold that active one. Our witness does not diminish or replace the active one. Our witness, instead, recognizes the magnitude of what the patient does and lives through. Our witness takes account of the gravity of that other person’s lived experience. I don’t mean to sound mystical, but it is indeed a matter of some awe in the presence of profound human experience. This is important for the health care professional because the posture conveys to the patient that the doctor or nurse grasps the gravity of the patient’s situation and respects the magnitude of his or her plight.

LS: Time is such a commodity for those involved in health care—it takes time to listen attentively to people’s stories. Can this really be done in a busy clinical setting?

RC: We have no choice. We will simply have to learn how to do these things more efficiently and we will have to change office routines to guarantee that the time for these essential parts of health care get done.

LS: Is there anything that you would like to add in closing?

RC: There is so much to do. Thanks for your very thoughtful questions.

LS: Thank you very much for your time, Dr. Charon, and for the important work that you are doing. We are very excited to have you speak and lead a workshop in narrative medicine at our upcoming conference!