“The candle is not there to illuminate itself”

The first two days of the TQR conference in Fort Lauderdale has me reflecting. The words of Nowab Jan-Fishan Khan from the 19th century which entitle this blog were spoken by Patricia Leavy as part of her opening Keynote presentation. She spoke of her personal and professional journey so far – battling to find ways of helping the wider world to see and understand the experiences of others through use of the Arts (Arts based Research). My reflections were not so much about THIS research, rather a realisation that this, and other presentations through the conference were focussed on finding ways to ‘hear’ others’ experiences….and the importance of those efforts. Leavy called her efforts in the Arts a way of ‘accessing and expressing subjugated (hidden) knowledge’ and despite the academic language it was really a fancy way of saying ‘enabling people to speak using any means possible, anything that would help them to tell their stories’. This got me thinking abut the importance or recording what happens to us, what we think or feel and the impact it has on us, our families and communities. Oral histories are an interwoven part of my history, our history whether told through family gatherings, girlie chats or shared stories. These all have a purpose in helping to create connections and pass on knowledge and experience.

“The candle is not there to illuminate itself” – a powerful statement. It got me thinking – How does this relate to me and where I am now? How does this relate to the importance of my work, my contributions at this time? Am I a candle? And if so what am I here to illuminate by my actions?

My current work with the Compassion in Practice Team at NHS England is an opportunity to do what? Compassion in Practice – Compassion in research, how are they linked? For me its about enabling and valuing the importance and contribution of the health care workforce in human experience of care. Guiding and developing evidence with a purpose – the purpose is key. It brings me back to the quote of the Candle…its purpose is to illuminate a room. Providing a light by which others might see, be safe and the room in which it resides may be seen.

For me, here lies the purpose.

The role of Compassion in Practice (CiP) is to enable us to see, experience and promote the care that the people we care for deserve and that we as nurses (and other health care professionals) deserve to be supported to provide. The research, the challenge for me, is to formulate an evidence base for CiP; a candle – source of light so that its effects can be seen, experiences shared and its impact appreciated. Without evidence, without the research the impact of CiP cannot or would not be seen. Our efforts may provide solace for individuals or make us feel ‘we made a difference’ but no one would know, no one would be able to use our experience to inform their own and good practice would be more difficult to spread.

Without a Candle our efforts would remain in the dark…….hidden and silent. Illuminating nothing.

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‘All my life I have been sick and tired. Now I’m sick and tired of being sick and tired.’

Don’t be alarmed by the title for this blog!!

I am currently in transit on my way to speak at a conference. During my first stage journey two things happened – I decided to remind myself of a book that I had not read for at least 10 years and so downloaded “Sisters of the Yam’ by bel hooks….. on starting to read the second chapter I remembered an email I had from a friend who was trying to read an article about Black women’s health I had written for an online magazine (AfroNoire) last year. It appears that the site is temporarily down – but these two events have prompted me to reflect on what I could do to both give access to the article to other (Black) women in the meantime and channel the thoughts that resurged about BME health and Black women’s health in particular following my reacquaintance with the writings of the wonderful bel hooks….So below is the original article I wrote. I am not sure how close it is to the final ‘published copy’ but I thought I would share it with you…………..

Sick and Tired….Black women and health

In 1964, Fanny Lou Hamer, an African–American civil rights activist (1917-1978) wrote,

‘All my life I have been sick and tired. Now I’m sick and tired of being sick and tired.’

In her lifetime Fanny Lou had fought hard against the racism, sexism and economic oppression of the time and the personal battles that came with her chronic illnesses and disabilities. Despite these obstacles she continued to campaign and support the rights of all people, particularly Black women for equality to improve their life and health chances. However in the 21st century and fifty years after her famous speech I find myself reflecting on the state of Black women’s health today. The question which rebounds and reoccurs in my mind is ‘Why in a time of clear evidence about risk, personal care and social opportunities are Black women still falling behind in measures of wellbeing?’.

As Black women, the statistics (which we know never lie) tell us we are succeeding in education and the marketplace, running our own companies and holding our own in the boardroom while balancing home and family responsibilities, often alone….yet among, these and our many other triumphs are we losing the battle for our health?

Dr. Nancy Snyderman from the USA speaking on the news channel MSNBC in 2007 stated that black women in America have an increased risk of mortality greater than any other ethnic group for almost every major cause of death. Meanwhile here in the UK, among Black Caribbean women, diabetes is relatively high (8%) compared with the general female population where the rate is 3%. Working hard and keeping the home together are themes that have continued to be associated with Black women’s lives throughout history…’Strong Black Woman’ is a label to be proud of, but often the women behind this title live from day to day, struggling to hold up others and lead the communities, with little time to hold up themselves.

Throughout my working life in healthcare and my personal networks I have spoken to many black women about their own health and that of their female family and friends, regular comments made during our discussions are “we are always expected to be strong women who aren’t supposed to whine about anything,”

“You just take life as it comes and do what you have to do. If you are having troubles or problems, you should just pray about it and keep going”.

I have often reflected on these conversations and my observations of myself and others and wondered why for generations, we as Black women are continuing on, far beyond the point of being ‘Sick and tired’ as described by Ms Hamer.

The contradictions and conflicts of culture, personhood and keeping a sense of self worth have been difficult demands to balance for most women at some time in their lives. At the same time these arguments continue to reappear in all spaces from the political arena to the Sunday dinner table or the ever welcome ‘girls night in’. discussions and arguments rage about issues of blame, risk and the responsibility of Black women for their own predicament. The intersection of culture, traditional and expectation with social, economic and educational factors for women mean that the answers to such challenge are never simple. Within our own heritage ‘PHAT’ women are revered, their voluptuous curves, a sign of ‘looking good’ while at the same time we fight to control the ‘fat’ that threatens our lives and health in the form of diabetes, heart disease and stroke.

It is true that women’s health status varies greatly depending on economic class, race, ethnicity, education, and home country. Moreover the strong relationship between minority status and poverty clouds the issue for many Black women. However, we must also concede that often choices we make for ourselves can reduce or optimise our health chances. Black women’s health continues to be the worst, irrespective of economy, education or location……but are we truly victims of circumstance?

We have all heard, witnessed or lived the experience that Black women are more likely to go without food, shelter and warmth for their children. They will go any distance to support a friend, sit with neighbours when they are afraid and cheer the loudest when their children succeed. At the same time they will ignore the pain and discomfort they feel – ‘tomorrow I will be better’. In health and prevention the greatest enemy of life chances and survivorship in Black populations are late presentation (delay in seeking help) and poor treatment adherence (not attending appointments or stopping medication/treatment). Couple this with putting yourself last on your own list and the combination can be literally deadly.

My musings on health are not an attempt to minimise in any way the external pressures and situations which render us more likely to suffer ill health or reduce our ability to maintain a sense of well being. Neither is this an exercise in self blame or self pity. Rather it is a response to the strength of Ms Hamer and many women like her. I came across this quote from a woman, Kim McMillan, who died shortly after completing her book. It does not speak to Black women from a Black perspective, but I believe it beautifully summarises the call for us to be different, for our own sakes and those of our future daughters

“When I loved myself enough…..I began leaving whatever wasn’t healthy. This meant people, jobs, my own beliefs and habits – anything that kept me small. 

My judgement called it disloyal. Now I see it as self-loving.” (McMillen 2009 )

In other words, knowledge, self knowledge, is power but when we take the opportunity to use it or gain it…… we must do so!

Happy New Year!

Happy New Year to all!

I am excited about the start to 2015 – Not least because it starts with a visit to Florida USA. I will be speaking at The Qualitative Report 6th Annual conference in Fort Lauderdale. This will be my first visit to Florida (very welcome as the temperature drops in UK!). This will be the first presentation of research relating to my ‘Silences Framework’ in the USA. I developed the Theoretical framework for conducting research into sensitive issues from marginalised perspectives following my PhD in 2004. It took 6 years of reflection, thinking and re-writing before The Silences Framework was first published in 2010. This visit marks a milestone in developing the Framework beyond my own thoughts. My only regret is that my friend and colleague Dr Martin Glynn who completed this first research project is unable to join me. I aim to do his hard work proud.

I will also be meeting nursing students and faculty in the region, including The University of Central Florida during my visit. I have maintained contact with the National League for Nursing since my visit to the USA last year as part of my Winston Churchill Travel Fellowship. The NLN, particularly Dr Beverley Malone (former General Secretary of the RCN, UK) and Dr Virginia Adams, have been invaluable in helping me make contact with Nursing Schools in the region. I would recommend any nurses traveling to USA to contact them for information and support.

Well I think that’s enough for today….. I have a suitcase to find and insect repellant to buy

🙂

Hot off the (Word)press! 

From January 2015 I will be starting a new blog on my website.

This will enable me to record my thoughts, musings and commentary on events I attend as they occur. This will be particularly useful during my travels when I attend multiple events in a short space of time. It will also (hopefully) make it easier for me to give full credit to the range of interesting people I meet and those who help me on my way.

So Happy New Year to you all and see you in 2015!