A new report Hear me Now by the organisation BME Cancer Communities has highlighted an ‘uncomfortable reality’: black African Caribbean men in the UK are 30 per cent more likely to die from prostate cancer than white men. They have a three-fold greater risk of prostate cancer and are more likely to be affected by it at a younger age. The report discusses multiple causes including a lack of ethnicity related cancer research, geographically uneven service provision, and culturally insensitive health promotion and care. The report also recognises how prostate cancer, its diagnostic testing, treatment and effects, can pose a particular cultural threat to black men.
These inequities of access to services, coupled to a heady mix of gender and race politics and cultural mores about death, dying and illness, make this topic an especially complex one to address. More attention has been given recently to the sensitivities and stigma that surround men’s experiences of cancer. ‘Balls to Cancer’ is one example of a men only campaigning and support group that is pioneering more direct and humourous approaches to raising awareness of testicular cancer. We still have much to learn about how sensitivities to men’s cancers play out cross culturally.
There is certainly a dearth of research, literatures and discussion on black masculinities and illness. The work of the artist Donald Rodney who had sickle-cell and who died in 1998 is still the rare exception. For the Trinidadian writer and political activist, Darcus Howe, diagnosed with the disease in 2007, prostate cancer is the silent killer of black men. A TV documentary What’s Killing Darcus Howe? – aired in 2009 – charted Howe’s attempts to raise awareness of the disease amongst British black men. Howe says that he found a machismo-related resistance to acknowledging vulnerability to The Beast. Set against cultural representations of black masculinity as hyper-masculinity – physical, potent and über-sexual – the emasculating connotations of the disease, Howe seems to suggest, make it more difficult for black men to think and to talk about.
It is something of a convoluted irony that one of the most erudite and thought provoking books on prostate cancer Intoxicated by my Illness was written by Anatole Broyard. Broyard was of creole heritage but ‘passed’ as white until his death in 1990. The stripping of issues of race from Broyard’s narrative raises questions about whether this made it easier for him to talk and write openly about the disease. Nevertheless, the irreverence of the book remains genre-busting.
I’ve had eight-inch needles thrust into my belly where I could
feel them tickling my metaphysics. I’ve worn Pampers. I’ve been
licked by the flames and my sense of self has been singed.
Sartre was right: you have to live each moment as if you’re
prepared to die
Advising unrelenting resistance to the engulfing pressures towards compliance and inhibition at times of serious illness, Broyard demanded of his fellow patients that “You must remain yourself”. Broyard exalted, teased and cajoled patients to dig deep and to evolve their own idiosyncratic style in illness and dying. With characteristic flamboyance Broyard spoke ill of the ill, ditching the traditional piety and inertia of the sick-role in favour of heady talk of sex, desire and irresponsibility.
As I have found in my own work on transnational dying, different styles of living with prostate cancer are emerging, but these styles and stories, like their narrators are still very much marginalized. As Hear Me Now suggests first generation African Caribbean men do not find it easy to talk about the disease and to ask for information from professionals. Basil, who was 70 years old when we interviewed him in 2004 – and who participated in the documentary Conversations to Remember – was uniquely open and frank when talking about the urinary problems and erectile dysfunction that can follow surgery. Basil wanted to reassure other men about the help that is available through the NHS for such problems.
There are also generational changes. Men in their fifties and early sixties are stepping into the discursive void that surrounds black men’s experiences of the cancer. At one mixed-sex group that I attended in South London, where hospice patients were being asked for their views on improving services, a Caribbean man in his sixties stood up amongst the other seated patients. He talked about the difficulties of coping with his treatment for prostate cancer, particularly the drug Zoladex that is administered by injection into the abdomen. The injections deposit a slow-releasing rice-grain sized pellet of the drug underneath the skin. Zoladex lowers testosterone levels and can cause feminized symptoms of hot flushes, night sweats and mood swings. There were nods of sympathy for the patient’s story. Everyone’s experience is acknowledged and in principle no topic is off limits. At this group in South London, the supportive exchanges were entirely predictable until the man with prostate cancer stopped describing his treatment and said with great intensity “I can’t make love to my wife any more and I miss it” There was a silence across the room, then a shuffling of bodies and chairs. It can be difficult to find a sincere response when hit by the interlacing of threatening topics such as race, sex, illness and death.
And the double bind is that even as some black men are resisting dominant tropes of masculinity, by talking about sex or impotence openly, their rebelliousness can end up bolstering the very attributions of black masculinity as hyper-sexual that they seem to be undercutting. Hear Me Now is such an apt title. It is clear that we need more discussion, more stories, more listening.
About the Author: Yasmin Gunaratnam teaches in the Sociology Department at Goldsmiths College. She is presently on a British Academy Fellowship, researching the palliative care concept of total pain, with a focus on social suffering and end of life care for migrants.