Dr Magda Marczak is a lecturer in clinical psychology at Coventry University in the UK. She teaches into the Clinical Psychology Doctorate Programme in the Faculty of Health and Life Sciences, School of Psychological, Social and Behavioural Sciences. She is also one of the new co-editors of the ISCHP blog. Find out more about Magda’s academic journey in this Career File.
How did you embark on a career in academia? What was it that prompted this decision? It was a very conscious decision. When I moved to the UK in 2004, I realised that my academic qualifications were not recognised. As such I could not officially practice as a Clinical Psychologist in the UK and needed to figure out what route to take. After a couple of years, I decided academia was the way forward. Working as an Assistant Psychologist afforded me enough ‘brain space’ to complete a PhD, although I must admit there were times I didn’t believe I would ever complete it and was ecstatic when it was done! Continue reading →
Few people relish the prospect of using sexual and reprodutive health services. Such encounters can be a bit awkward at best and – at worst – uncomfortable enough to discourage anyone from doing what’s needed to maintain their health and wellbeing. Buying condoms, asking a doctor about contraceptive options, having infections checked out, discussing bleeding or not bleeding, erections or their absence, are difficult for most people.
This is why sexual and reproductive health services need to be organised with the service user’s emotional comfort in mind. Doctors and nurses, the atmosphere in clinics, and even the physical layout of family planning centres should enable people to move past the cringe and do what’s necessary for their health.
But some prospective service users are deterred from help-seeking, rather than catered for. When service providers have poor attitudes or aren’t familiar with the circumstances of patients, buildings are inaccessible and health facilities ill-equipped, additional barriers to care arise.
People with physical disabilities are one group of people who may face these challenges in taking care of their sexual and reproductive health. People with physical disabilities are not a homogeneous group, and there is huge variety in individuals’ experiences, functioning, histories and needs. We use the term “group” here to refer loosely to individuals with a somewhat shared experience of conditions of the body that make it more difficult to do certain activities and interact with the world around them. Yet, despite this diversity, many people with disabilities share a common experience of difficulty in accessing healthcare services, including services for sexual and reproductive health.
In our recently published book we document some of the experiences people with physical disabilities face when trying to use sexual and reproductive health services in South Africa. We found that some service encounters are intolerably uncomfortable, creating barriers to access. These barriers make it difficult for people with disabilities to realise their right to health, autonomy, and inclusion.
The disability and sexuality study
Between 2015 and 2017, our research group conducted a study on the sexual and productive health of people with disabilities in South Africa.
The study had two arms: the first was a large survey of South Africans without disabilities. We wanted to explore their attitudes towards the sexuality and sexual and reproductive health rights of people with disabilities. The second was a photovoice study (participants were given cameras to document their lives) conducted with people with physical disabilities from the Western Cape. In the survey, we asked 1,723 South Africans without disabilities questions about dating a person with a physical disability. We also asked questions about their perceptions of the sexual and reproductive health rights and needs of people with disabilities.
The results showed that many people without disabilities hold problematic attitudes towards the sexuality of people with physical disabilities. They don’t believe that people with physical disabilities have the same rights and sexual health needs as people without disabilities.
In the second arm of our research, we interviewed 13 people about their personal experiences of sexuality and relationships as a person with a physical disability.
Among the results from this arm of the project were participant accounts of nurses asking them why they had become pregnant when they “were not fit to be parents”.
One woman who uses a wheelchair spoke of trying to get contraceptives at a clinic:
Oh, the nurses were also like, why? What are you doing here? I came for prevention … Why? Do you have a boyfriend? Yes, nurse, I have a boyfriend. No, this is not right.
The attitudes that people with disabilities may encounter when trying to access sexual and reproductive healthcare are hugely deterring. Some of this may relate to health workers’ lack of familiarity with disability issues, and to their own discomfort.
Attitudinal issues are not the only concern. Access – whether people can get what they need – has at least three layers.
Is there an appropriate service to meet their needs?
If there is such a service, is it possible to access this service? For instance, is there appropriate transport? Can a wheelchair user, for example, get into the building where the service is offered? Can the user afford the service?
Are there social or cultural forces which prevent people from accessing services? For instance, do others believe that they don’t have a right to use these services?
One or more of these layers may apply to people with physical disabilities.
In terms of policy and South Africa’s constitution, people with disabilities are entitled to the same access to all healthcare as the rest of the population. This includes sexual and reproductive health services. But as the participants in our research have shown, the reality is quite different. It’s influenced by factors such as the lack of access to transport, buildings that are inaccessible, and an untrained or inexperienced workforce. Policies and theory may at times feel rather hollow.
Dismantling barriers, improving access
Our study of physical disability and sexuality in South Africa showed that rights to sexual and reproductive health for people with physical disabilities are regularly impinged upon.
It also showed that much of this exclusion stems from assumptions about the sexuality of people with physical disabilities, especially among people without disabilities.
Our research, like other studies, clearly shows that there are numerous prejudices about disability and sexual rights. Many people without disabilities believe that people with physical disabilities are asexual, and that it’s a problem if these people engage in sexual activity. As a result, disabled women who are pregnant may be berated for having had sex, for example.
The disabled people with whom we worked closely (and who co-produced our book) tell story after story of feeling excluded and misunderstood with regard to their sexual lives and their decisions to have children. They emphasised the desire to have others recognise that people with disabilities are not different from people without disabilities – they represent a full range of sexual experience and interests. And, importantly, they also represent the full range of human needs for sexual and reproductive health services.
All layers of inaccessibility – from problematic attitudes of healthcare workers to conceptions of disability in society to how buildings are constructed – need to be addressed for people with physical disabilities to realise all their rights.
I no longer have any illusions of myself as a creative writer. I was disabused of this notion very early in my academic life after receiving feedback on a chapter I wrote for an interdisciplinary book. The editor was an English professor and published poet. After providing kind feedback on two drafts in which he politely encouraged me to be more expressive, he announced flatly that my writing style was ‘very soc sci’. He was not wrong. Our training as social scientists, and especially psychologists I think, rewards clarity, conciseness, and coherence (the social scientist’s holy trinity) but doesn’t foster creative expression. Yet, there are those rare (infuriating) scholars whose prose is pleasurable, provocative, and effective. It is possible, apparently!
Sarah Rileyis a Professor in Critical Health Psychology at Massey University, New Zealand and the ISCHP Vice-Chair. Her work looks at how taken for granted ideas in our society open up possibilities for what people can say, think, feel and do, while shutting down others. She is particularly interested in the dynamics between neoliberalism and subjectivity, and questions of gender, embodiment, health and citizenship. She has co-authored several books including Critical Bodies (Palgrave, 2008), Technologies of Sexiness (Oxford University Press, USA, 2014) and Postfeminism and Health (Routledge, 2018), she is currently writing Postfeminism and Body Image (Routledge), and Digital Gender, Affect and Subjectivity (Routledge).
By Katrina Roen, Erik Carlquist, & Lin Prøitz; December 2020
For decades, researchers have debated the pros and cons of digital technology: does it help us live better lives, or does it make that harder? Now, in an era of pandemic and lockdown, our day-to-day experience of digital media has been brought even more clearly into focus. Our research examines the emotional aspects of this experience, asking: how are digital media woven through our lives on an emotional level?
The number of people living with dementia is growing exponentially. The effects of this neurocognitive disorder (the majority are the Alzheimer’s type) are not confined to the numbers affected by the condition. The impact of dementia on the lives of persons living with dementia (PLWD), their caregivers and care professionals must be explored. It is important to reflect on the relationship between society and dementia as it has an overwhelming effect on the individual and those around them. From the moment a person is suspected to be suffering from dementia, their social interactions with others progressively changes.
‘Is there something wrong with me being White?’ a New Zealand politician recently retorted when her party was challenged about its all-White front bench. She went on to say, “We’re a party of merit and we’re a party of principle – I’m not going to be distracted about people’s gender or ethnicity.” In this blog post, Mary Breheny offers an answer to her question.
By Kathryn McGuigan, Kristi Urry, Andrea LaMarre, & Gareth Treharne, September 2020
In our first ISCHP blog post, we reflected on our contributions to the Illness Snapshots Symposium at the ISCHP conference 2019 and what this provoked for us in relation to how and why we do our research. At the end of the blog we raised several questions as to how, when, why, and to what extent researchers can or should reflect on their own and others’ work as people doing (critical) research. In this follow-up post, we continue this conversation with co-presenters from the Snapshots symposium: Andrea LaMarre and Gareth Treharne. Having reflected on their own experiences in response to the questions we raised in our first post, we include their (abridged) reflections in this piece, braiding these with our own ongoing reflexive considerations. Once again, we invite readers to join this conversation by engaging with colleagues and students, with us, and with the wider ISCHP community.
The global health emergency caused by the outbreak of the novel coronavirus SARS-CoV-2, known colloquially as COVID19, since late 2019 has resulted in calls for COVID19-related topics to be prioritised in research to inform the public health response to the pandemic. Acting on the urgent need for research (and to some extent, social responsibility), many leading cross-disciplinary journals have offered publication fee waivers for research papers covering a COVID19-related topic in any field, including but not limited to chemistry, biology, medicine, economics, and psychology. Further, in many (if not all) of these cases, the open-access fee additional to the cost of publication is also relinquished.
Last month I found myself in a weird situation. It had taken me some time to make the final corrections to a paper I had had accepted (by Feminism & Psychology). I had written it under what we now call ‘normal’ conditions, and here I was, ‘shielding’ myself while working within the Covid 19 + #BlackLivesMatter (BLM) situation. The world had changed profoundly, and I realised the paper needed to change too.
I was somewhat alarmed to find myself, as a 70-year-old, suddenly categorised as a member of a particularly vulnerable group. This is a group of people based only on the number of years that they have lived who have been singled out as needing to be extra careful and isolated earlier than others during the Covid-19 pandemic. Of course, this is for the protection of our health and signals society’s concern and protection of members of the population who are clearly more at risk.
As we age, we are more likely to suffer the underlying health issues which also make people more vulnerable to this virus. Unfortunately, using such a crude indicator of vulnerability as age alone has its downside. Categorising people in this way feeds into prejudice against older people and a deficit view of ageing that is already circulating in our society. Such ageist attitudes depict people in terms of their age alone and obscure the huge diversity that actually exists among older people.
African countries’ responses to the COVID19 pandemic are complicated by an array of economic and health challenges, introduced and entrenched by neo/colonialism and neoliberal economics. Yet, at the same time, the histories and present realities of these settings mean that African scholars have a different perspective on how to respond to the pandemic than those in more privileged settings. In this piece, I reflect on two important lessons that can be learned from African responses.
The COVID-19 pandemic was announced on 11 March 2020 by the World Health Organization, marking a turning point for the public health systems serving the health of constituent populations across the globe. This declaration moment is important for narrative on COVID-19 because it is the point at which it is accepted that the virus is not only travelling to different countries, but is now circulating in those countries. Governments are now required to take action to moderate the impact of the infection, reducing harm for the polity until the virus – through the mutation of its biological properties, human immunity, vaccines or some combination of these – takes its place, we hope, among the many other microbes with which human life has found co-existence.
The WHO declaration is also an important moment for the COVID-19 story because it reveals how data about notifications of diagnosed infection and deaths are used to make decisions and therefore reveals how, in the circumstances of a pandemic, it is keenly apparent that numerical and narrative futures constitute each other.
Over the last few weeks I have been caught, suspended, and at times paralysed, between the two stark realisations that: I am incredibly privileged to be able to continue the work of teaching and research online as we go into full lock down. After all, I will be paid my full salary, I have the right technological set-up at home and I can continue to undertake meaningful work that I am passionate about.
But that also: I am absolutely struggling to continue the work of teaching and research online. My already full pre-lockdown workload has not diminished. Indeed it has increased through ever-changing institutional mandates, crisis response meetings, learning of new digital tools and increasing my support for struggling students and colleagues.
In this Book Review, Sarah Riley provides a review of Digital health: Critical and Cross-Disciplinary Perspectives by Deborah Lupton. This is the thirdreview of the books from the Critical Approaches to Health series co- edited by Kerry Chamberlain and Antonia Lyons, and published by Routledge, in association with the International Society for Critical Health Psychology. (ISCHP members receive a discount on the purchase price of books in the series.)
On many grant applications, there is space
to describe “career interruptions” to help explain larger gaps on one’s CV.
This is a space usually reserved for parental leaves, medical leaves, or other
such generally government-documented reasons why an academic might have less to
show for a particular amount of time in their career. I wonder about this
space, and what else might occupy it. I wonder about the framing of life as
“interrupting” work, and the implications of the need to constantly prove that
we have been productive enough by way of ink on a page indicating that we’ve
researched and written and had our words accepted by a high-enough tiered