The International Care Ethics (ICE) Observatory

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  • Saturday 01 Sep. 2018

  • Sunday 02 Sep. 2018

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Ethics in Care blog

  • Another week has flown by and I’m absorbed in constructing the story I will tell at my Fulbright ‘reflections’ lecture this coming Friday. My aim is to keep in mind the teaching of the Sankofa bird (‘we must go back to our roots in order to move forward’) and the Fulbright vision (seeking mutual understanding). Looking backwards to look forward with a view to developing mutual understanding.

    Experiences during the American Public Health (APHA) Conference in Atlanta, from participating in a Respect and Health Disparities Workshop on Friday and during the Bridge Builders Programme events this weekend have given me much to mull over.

    First to what I might say about my past on Friday.

    Few here know where Donegal is or what ‘The Troubles’ were. As many of you know, National Geographic recently voted Donegal the ‘coolest place on the planet’ so this will have to get a mention. Regarding ‘The Troubles’, I stumbled upon an excellent documentary, which brought my student nurse days at the Royal Victoria Hospital in Belfast, flooding back (see https://www.youtube.com/watch?v=qs1DM3g2ZqA).

    The day after I’d watched this, I got into conversation in Atlanta. The man told me he was from New York and had been in Belfast ‘on business’ in the 1980’s. I was intrigued. ‘What sort of business would an American be doing in Belfast in the 1980’s?’ It turned out that he was a lawyer who’d represented a high profile republican politician. How I would have loved to have heard his story but, sadly, he was rushing back to New York. Perhaps only to escape the overly curious Irish interrogator he’d met at the concierge counter…

    Facilitator and bioethicist, Dr Sodeke, opened the Respect and Health Diversity Workshop by reminding participants that ‘every one of us has a story.’ And stories, it strikes me, are very much what a sabbatical is about. As Arthur Frank says: ‘Stories animate human life; that is their work. Stories work with people, for people and always stories work on people, affecting what people are able to see as real, as possible, and as worth doing or best avoided’ (Letting stories breathe: A socio -narratology 2010).

    A most interesting part of the present at the Atlanta American Public Health conference was the closing panel discussion on the theme of ‘climate change and social justice.’ The women on the panel represented the most diverse and empowered perspectives imaginable and told their stories of work with local communities to safeguard and promote the flourishing of people, other species and the environment in Alaska, Georgia, Chicago and California (details of speakers and abstracts here – https://apha.confex.com/apha/2017/meetingapp.cgi/Session/51560 ). The conference in Atlanta brought together 12,000 delegates, many of whom were critical of politicians’ lack of commitment to the conference agenda.

    The future was most apparent during this weekend’s Bridge Builders’ Program activities. The National Center for Bioethics in Research and Health Care at Tuskegee University is enabling less privileged young people to prepare for college – making a bridge between High School and University. Yesterday – Saturday – they were exposed to the story of Dr J. Brooks, School Superintendent of Macon County. Her talk was called ‘Growing up Country’ and detailed the impact of home, church and school on her development. Her story was inspirational and the students were enthralled. She shared also how ‘organic’ food was produced making use, for example, of every part of a pig – ‘from the rooter to the hooter’. I was left floundering when she asked me directly ‘do you use every part of the pig in England?’

    Today – Sunday – the Bridge Builders’ students were welcomed to  the Nebraska Missionary Baptist Church in Hardaway and were treated to a warm welcome, passionate worship and a hot lunch. I was privileged to accompany the students and to witness the encouragement from the congregation for students who seem to be on the way to a promising future. In saying goodbye to me, the friendly Pastor asked me to give his regards to the Queen.

    I’ll continue to  ponder the bridges I need to cross and connections I need to make to consolidate my experience here. More next week…

  • As I was writing this blog, reports came in of a church shooting in Texas, resulting in the death of 26 members of the congregation and at least 20 injured. The media focus thus far has been on preventative strategies such as arming volunteers at church services.

    A week ago, I was invited to a church service in Tuskegee and had privileged access to the congregation’s reflections on, and celebration of,  their faith. The service was more participatory than any I had experienced previously and included uplifting singing and music. Towards the end of the service there was an invitation to help with a drive-by food bank. On the following morning, I joined with volunteers from two churches to prepare food parcels to distribute to 165 families who queued in their cars to collect a range of drinks, vegetables and other groceries. There was a good deal of humour and banter between volunteers and food recipients. Good people from different churches doing ethical work.

    This week I am attending the American Public Health conference in Atlanta which is on the theme of: ‘Creating the Healthiest Nation: Climate Changes Health’. The introductory talks and films left the thousands of participants in no doubt that climate change is real and there is a need for urgent action to slow down the potentially devastating consequences for the environment and human health. ‘Health’ several speakers said, is a right, not a privilege.

    A center that brings together rights and church is the Center for Civil and Human Rights which I visited this afternoon. The center details the story of the US Civil Rights movement and connects this with global Human Rights. The story is compelling and impactful. One of the most challenging aspects is the simulation of a sit-in where center visitors are invited to put on headphones and to experience abusive messages and feel as if your chair is being kicked. You are asked: ‘How long can you last? Put on a pair of headphones and put your hands flat on the designated areas.  Experience a simulated response to your non-violent protest and see how long you can keep calm with your hands steady on the counter. Try it with your eyes closed.’ (see www.civilandhumanrights.org).

    When I arrived in Tuskegee just over a month ago, I knew little of the intensity and reach of church activities in the southern states. I recently read Albert Raboteau’s book ‘Slave Religion’ which helped me better appreciate the history and complexity of African-American religions. Until today, I had not appreciated how pervasive and strong the role of the churches was in relation to the civil rights movement. The religious beliefs of Martin Luther King is evident in his talks and writing and it is clear that much civil rights activity was influenced by church teaching.

    So a church massacre, a drive-by food bank, civil rights…

    What can be said that they have in common is that they relate to different aspects of public health.  It was clear that there was a need for the food bank provisions which make some contribution to improved family health. It was repeated several times at  today’s conference is that health is a human right. This right is not as yet established. Regarding a public health perspective on gun violence, you might find this piece by Steve Miles of interest – https://www.minnpost.com/second-opinion/2013/04/guns-and-bioethics-qa-steve-miles

    Until next week…

     

  • This week has been full-on with daily ‘Homecoming’ activities, for example, a parade, fashion show, pageant and football game (see below). This is a great way to entice back Alumni and bring them together with university staff and students for celebration of achievement and sport.

    Gaining some understanding of the complex and multi-faceted nature of Tuskegee bioethics requires engagement with history, culture, civil rights and religion in the ‘Black Belt’. It’s wonderful to have the time and space to read and have conversations with interesting colleagues.

    The stories of two women have stood out and I invite you to put yourself in their shoes.

    One woman is on a bus on her way home from work. She’s seated in the front of the bus section allocated to people of colour. The bus fills up and when a white person gets on, the bus driver instructs the woman to give up her seat. She refuses, the bus driver calls the police and she is arrested.

    The second woman is a public health nurse working on a government public health project. She liaises with the disadvantaged community to recruit subjects, test and conduct regular health checks. They are not informed of their diagnosis nor that reatment is available for their condition. She develops close relationships with the subjects and their families.

    Mrs Rosa Parks

    The first woman referred to is Rosa Parks. Other women, prior to this incident on 1st December 1955, had taken a stand but it was Mrs Parks’ case that was used as a test case to end segregation in Montgomery, Alabama. When asked why she refused to move she said ‘(I) was tired of giving in.’ The stand she took served as a spark that contributed to a non-violent civil rights movement that resulted in desegregation (see her autobiography ‘Rosa Parks: My Story’).

    Nurse Eunice Rivers

    Whereas Rosa Parks is portrayed as a person of integrity and as a positive change agent, the role of the second woman, Nurse Rivers – also African-American – is ambiguous. She colluded with a study that is now condemned as unethical but remained unapologetic throughout (see Susan Smith’s article ‘Neither Victim nor Villain: Nurse Eunice Rivers’). On the one hand, it seems plausible that there would have been a power imbalance between a Black, female, nurse from the South and White, male, physician/researchers from the North. But, on the other hand, she knew what the study involved and deceived subjects and their families for four decades.

    What would I have done?

    Iris Murdoch writes of looking with ‘a just and loving eye’. This is particularly helpful – and hard – when we come across a character whose behaviour is ethically challenging. It can be hard too to understand exceptional courage and those who take risks for ethical causes. What if we look again and try to understand the range of explanations for the person’s behaviour considering also the historical, cultural and organisational context of the person? Perhaps a question for all of us is ‘What would I have done?’… If I was in the shoes of Rosa Parks? …Or in the shoes of Nurse Rivers?

    Some of you gave me a hard time following last week’s blog on the Wizard of Oz. You said I should have portrayed him as the charlatan he was, leading young innocents astray by deceiving them resulting in the melting of a witch. Good that you keep me on my toes…

    This coming week I will be spending time in the Tuskegee University archive and will be taking a special interest in documents relating to health care professionals involved in the US Public Health Syphilis study. If you want to learn more about the study, I recommend this film: https://www.youtube.com/watch?v=qNa8CnC4sSU (Thank you to Pam Grace who sent me this link)

  • It’s impossible to be in Kansas without thinking of ‘the Wizard of Oz’.

    You know the story?

    Dorothy and her dog, Toto, are transported from Kansas to the Land of Oz. The house they travelled in lands on, and kills, the Wicked Witch of the East. The Good Witch of the North advises Dorothy that if she wants to get home she should visit the Wizard of Oz. To get to the Wizard, Dorothy is told to follow the Yellow Brick Road. On her journey, she makes three friends who hope that the Wizard will deliver for them too. Scarecrow wants a brain, Tin Man wants a heart sand Lion wants courage. The Wicked Witch of the West intervenes to make their journey as difficult as possible. Despite the witch’s best efforts, the little group get to meet the Wizard. He tells them that to have their wishes granted, they need to bring him the broomstick of the Wicked Witch which they succeed in doing. 

    However…the Wizard is then exposed as an ordinary man. He argues that, anyway, each of them achieved what he wished for. Scarecrow displayed wisdom along the way so has a brain after all. Tin Man discovered love on the journey so has a heart. And Lion demonstrated courage in the rescue of Dorothy from the Wicked Witch.

    I enjoyed reading your responses to last week’s blog…

    You rightly said that ethics is not straightforward. That it is about head and heart and being able to come up with arguments rather than just stating an opinion. You commented that there is often ambiguity and uncertainty – ethical dilemmas and conflicts exist – and some things are just wrong (torture, rape, slavery, murder…). One of you said you don’t go into bars to avoid getting into arguments as to whether ethics is a matter of opinion or not.

    My visit to Kansas was to attend the annual conference of the American Society of Bioethics and Humanities (ASBH). There was plenty there to convince that the field of bioethics is flourishing and a wide range of interesting topic areas, for example, clinical ethics, research ethics, social justice, historical perspectives on medical exploitation, moral distress, resilience….

    Now what about that Wizard?

    Should we be disappointed that the Wizard turned out to be an ordinary man? Wouldn’t we all like to have someone wave a wand and make us (more?) wise, courageous and loving? Why wouldn’t we also pitch for booster doses of patience, kindness, humility and moral resilience?

    In this exclusive from Kansas, I’m speculating that the Wizard knew more than he said. He knew that, for example: the moral life is complicated: we humans are fallible and vulnerable: that none of us are wholly good or bad; And that to develop ethical dispositions, we need to practise doing good things. Reflectively, regularly and slowly.

    As it’s close to Halloween I must end with a word of waarning for any witches reading this blog. Please beware of little girls with dogs and red shoes.

    Next week I’m going to tell you about two interesting women.

  • Imagine you’re in a bar, earnestly engaged in an ethics-related discussion (as usual), when a man sidles up to you and says: ‘All this talk about ethics is just nonsense. It’s all a matter of opinion and there are no rights or wrongs.’

    How would you respond? Would you like a one word answer?

    Or maybe you’d like to tell him about the Sankofa bird? Read on…

    I’ve now more or less figured out the geography of the campus. I’ve located the eating places (student cafeteria not unlike a cathedral), university museums and gym. I’ve met some of the impressive honours bioethics students and been shown how to shake hands the American way (firmly not flimsy).

    I’ve  also worked out the pedestrian route to Tuskegee city centre. The city has a population of about 10,000 and a recent census showed that 95% of the population is Black/African American. The area has a rich and harrowing history with at least three significant episodes relating to Tuskegee University.

    The Good, the Bad and the Unforgotten

    The first involves the setting up of the ‘Normal School for Coloured Teachers at Tuskegee’ by former slave, Lewis Adams, in 1881. He recruited the inspirational Booker T. Washington, famous for his groundbreaking 1901 book ‘Up From Slavery’. George Washington Carver, came to head up the agricultural department and took resources to local farmers to help them improve their practice. Both men made significant contributions to education, research and innovative practices. The School evolved into Tuskegee University in 1985 and became a centre of excellence in, for example, aerospace engineering and bioethics.

    The second episode began in 1932 when the U.S. Public Health Services recruited 623 African American men from the Tuskegee area to take part in a study to research ‘the effects of untreated syphilis in the Negro male’. The research ‘subjects’ were not told the truth as to what the study was about nor were they offered treatment when antibiotics became available in the 1940’s. The study was not exposed until 1972, by which time many men had died and had passed on syphilis to their partners and children. In 1997 President Clinton apologised on behalf of the nation and awarded a grant to set up a bioethics center at Tuskegee saying: ‘the center will serve as a museum of study and support efforts to address its legacy and strengthen bioethics training.’ The word ‘legacy’ is central to the activities of the Tuskegee bioethics center

    The center logo, the Sankofa bird – a ‘mythic bird that flies forward while looking backward with the egg (symbolising the future) in its mouth’ – represents beautifully its ethos. There is a strong sense of responsibility and orientation towards not forgetting the injustices and exploitation of the past and looking towards a future where bioethics is as real as the activities of Washington and Carver: engaging with the community, teaching and conducting research that addresses the real concerns of African-Americans and those who are underprivileged.

    So back to you and the man in the bar…..

    I’d love to know how you said you’d respond so do email and tell me. You can, most likely, guess the one word response I am suggesting? Yes.. Tuskegee.

    This week I’m off to Kansas to a conference entitled ‘Journey to the Center of Bioethics and the Humanities’. So will that be ‘over the rainbow’ I wonder? More next week.