Trans people in Britain today have become a culture war ‘issue’. Despite making up less than one per cent of the country’s population, subjects of a toxic and polarised ‘debate’ which generates controversy for newspapers and talk shows. This media frenzy conceals a simple fact: we are having the wrong conversation, in which trans people themselves are reduced to a talking point and denied a meaningful voice.
Shon Faye reclaims the idea of the ‘transgender issue’ to uncover the reality of what it means to be trans in a transphobic society. In doing so, she provides a compelling, wide-ranging analysis of trans lives from youth to old age, exploring work, family, housing, healthcare, the prison system and trans participation in the LGBTQ+ and feminist communities, in contemporary Britain and beyond.
It is a manifesto for change, and a call for justice and solidarity between all marginalised people and minorities. Trans liberation, as Faye sees it, goes to the root of what our society is and what it could be; it offers the possibility of a more just, free and joyful world for all of us.
Few books are as urgent as Shon Faye’s debut … Faye has hope for the future – and maybe so should we.
Independent
Julian Is a Mermaid
Jessica Love | Children’s fiction
Beautifully illustrated and joyously inclusive, Julian is a M ermaid has a good claim to being the most progressive picture book of the decade. But even aside from the positive messages of tolerance and identity, Love’s future classic is a riot of colour, wit and glorious humanity.
Mesmerising and full of heart, this is a picture book about self-confidence and love, and a radiant celebration of individuality.
While riding the subway home with his Nana one day, Julian notices three women spectacularly dressed up. Their hair billows in brilliant hues, their dresses end in fishtails, and their joy fills the train carriage. When Julian gets home, daydreaming of the magic he’s seen, all he can think about is dressing up just like the ladies and making his own fabulous mermaid costume. But what will Nana think about the mess he makes – and even more importantly – what will she think about how Julian sees himself?
Every choice Jessica Love makes imbues the story with charm, tenderness and humour
New York Times Book Review
Conundrum
Jan Morris | Memoir
As one of Britain’s best and most loved travel writers, Jan Morris has led an extraordinary life. Perhaps her most remarkable work is this grippingly honest account of her ten-year transition from man to woman – its pains and joys, its frustrations and discoveries.
On first publication in 1974, the book generated enormous interest and curiosity around the world, and was subsequently chosen by The Times as one of the ‘100 Key Books of Our Time’. Including a new introduction, this re-issue marks a return to that particular journey.
Certainly the best first-hand account ever written by a traveller across the boundaries of sex.
Daily Mail
Wonderland
Juno Dawson | Fiction
Addressing issues of mental health, gender and privilege, Dawson’s novel is an irrepressibly stylish take on Alice’s Adventures in Wonderland.
Waterstones
Alice lives in a world of stifling privilege and luxury – but none of it means anything when your own head plays tricks on your reality. When her troubled friend Bunny goes missing, Alice becomes obsessed with finding her. On the trail of her last movements, Alice discovers a mysterious invitation to ‘Wonderland’: the party to end all parties – three days of hedonistic excess to which only the elite are welcome.
Will she find Bunny there? Or is this really a case of finding herself? Because Alice has secrets of her own, and ruthless socialite queen Paisley Hart is determined to uncover them, whatever it takes.
Alice is all alone, miles from home and without her essential medication. She can trust no-one, least of all herself, and now she has a new enemy who wants her head…
For more than three decades Armistead Maupin’s T ales of the City has blazed its own trail through popular culture from a groundbreaking newspaper serial to a classic novel, to a television event that entranced millions around the world.
The first of six novels about the denizens of the mythic apartment house at 28 Barbary Lane, Tales is both a sparkling comedy of manners and an indelible portrait of an era that changed forever the way we live.
Maupin’s other novels include Maybe the Moon and The Night Listener. Maupin was the 2012 recipient of the Lambda Literary Foundation’s Pioneer Award. He lives in San Francisco with his husband, the photographer Christopher Turner.
Inspiring, uplifting and necessary reading.
Steve Silberman author of Neurotribes, Financial Times
How to Survive a Plague
David France | Non-fiction
How to Survive a Plague by David France is the riveting, powerful and profoundly moving story of the AIDS epidemic and the grass-roots movement of activists, many of them facing their own life-or-death struggles, who grabbed the reins of scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease.
Around the globe, the 15.8 million people taking anti-AIDS drugs today are alive thanks to their efforts. Not since the publication of Randy Shilts’s now classic And the Band Played On in 1987 has a book sought to measure the AIDS plague in such brutally human, intimate, and soaring terms.
Weaving together the stories of dozens of individuals, this is an insider’s account of a pivotal moment in our history and one that changed the way that medical science is practised worldwide.
This superbly written chronicle will stand as a towering work in its field.
Sunday Times
The Line of Beauty
Alan Hollinghurst | Alt-fiction
It is the summer of 1983, and young Nick Guest, an innocent in the matters of politics and money, has moved into an attic room in the Notting Hill home of the Feddens: Gerald, an ambitious new Tory MP, his wealthy wife Rachel, and their children Toby and Catherine. Nick had idolised Toby at Oxford, but in his London life it will be the troubled Catherine who becomes his friend and his uneasy responsibility.
Innocent of politics and money, Nick is swept up into the Feddens’ world and an era of endless possibility, all the while pursuing his own private obsession with beauty.
The Line of Beauty is novel that defines a decade, exploring with peerless style a young man’s collision with his own desires, and with a world he can never truly belong to.
The best-deserving Booker winner ever.
The Sunday Times
Living and Loving in the age of AIDS
Derek Frost | Memoir
This is the tale of a devastating pandemic, of lives cut painfully short – it’s also a love story.
Derek, a distinguished designer, and J, a pioneering entrepreneur and creator of Heaven, the iconic gay dance club, met and fell in love more than 40 years ago.
In the early 1980s their friends began to get sick and die – AIDS had arrived in their lives. When they got tested, J received what was then a death sentence: he was HIV Positive. While the onset of AIDS strengthened stigma and fear globally, they confronted their crisis with courage, humour and an indomitable resolve to survive. J’s battle lasted six long years.
Turning to spiritual reflection, yoga, nature – and always to love – Derek describes a transformation of the spirit, how compassion and empathy rose phoenix-like from the flames of sickness and death, and how he and J founded the charity Aids Ark, which has helped to save more than 1,000 HIV Positive lives.
This is a story of joy and triumph, of facing universal challenges, of the great rewards that come from giving back. Derek speaks for a generation who lived through a global health crisis that many at the time refused even to acknowledge. His is a powerful story chronicling this extraordinary era.
A classic of our times The work of a great English stylist in full maturity; a masterpiece.
Mara Tagarelli is on top of her world. She’s the head of a multimillion-dollar AIDS foundation, an accomplished martial artist, and happily married. She has never met a problem she can’t solve — until suddenly she can’t solve any of them. In a single week her wife leaves her, she is diagnosed with multiple sclerosis, and she loses her job.
Now everything begins to feel like a threat. At first, she thinks it’s just her newfound sense of vulnerability. Then she realises the threat of violence is real, deadly, and heading straight for her.
Nicola Griffith’s So Lucky is fiction from the front lines, incandescent and urgent, a narrative juggernaut that rips through sentiment to expose the savagery of the experience of becoming disabled and dismissed.
Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently
Steve Silberman | Non-fiction
What is autism: a devastating developmental condition, a lifelong disability, or a naturally occurring form of cognitive difference akin to certain forms of genius? In truth, it is all of these things and more – and the future of our society depends on our understanding it.
Following on from his groundbreaking article ‘The Geek Syndrome’, Wired reporter Steve Silberman unearths the secret history of autism, long suppressed by the same clinicians who became famous for discovering it, and finds surprising answers to the crucial question of why the number of diagnoses has soared in recent years.
Going back to the earliest autism research and chronicling the brave and lonely journey of autistic people and their families through the decades, Silberman provides long- sought solutions to the autism puzzle while casting light on the growing movement of ‘neurodiversity’ and mapping out a path towards a more humane world for people with learning differences.
Wonder
R.J. Palacio | Children 9-11 years
‘My name is August . I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.’
Auggie wants to be an ordinary ten-year-old. He does ordinary things – eating ice cream, playing on his Xbox. He feels ordinary -inside. But ordinary kids don’t make other ordinary kids run away screaming in playgrounds. Ordinary kids aren’t stared at wherever they go.
Born with a terrible facial abnormality, Auggie has been home-schooled by his parents his whole life. Now, for the first time, he’s being sent to a real school – and he’s dreading it. All he wants is to be accepted – but can he convince his new classmates that he’s just like them, underneath it all?
Disability Visibility: First-Person Stories from the Twenty-First Century
Alice Wong | Non-fiction
According to the last Census, one in five people in the United States lives with a disability. Some are visible, some are hidden but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together an urgent, galvanising collection of personal essays by disabled people in the 21st century.
From Harriet McBryde Johnson’s account of her famous debate with Princeton philosopher Peter Singer over her own personhood, to original pieces by up-and-coming authors like Keah Brown and Haben Girma; from blog posts, manifestos, eulogies, testimonies to Congress, and beyond: this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings. It celebrates and documents disability culture in the now. It looks to the future and past with hope and love.
I worked with PHSI colleagues Dawn Craig, Fiona Beyer and Louise Tanner on EMPoWER funded by NIHR HTA to investigate whether providing powered mobility for very young children provides more benefits than the current practice of waiting until children are 5 years or older. The project was a broad collaboration of academics from Newcastle and Bangor, young people using powered mobility, and an international advisor board. We reviewed a wider range of published evidence from case studies to randomised controlled trials and to qualitative studies, and found that providing powered mobility for young children is likely to have many benefits, to be safe, and to be acceptable to families. The young people co-leading the project with us developed short videos of the findings – we’d love you to view them!
During the Covid-19 pandemic, the NHS faced an unprecedented crisis. In response, vital services for disabled children and young people were delayed, deprioritised, or closed. A national campaign by the Disabled Children’s Partnership has highlighted the challenges families of disabled children have faced because of this. In their most recent report, Then There was Silence, it was highlighted how families felt isolated, abandoned and not listened to.
A new PHSI project, Recovery, Renewal and Reset of Services to Disabled Children, led by Dr Lindsay Pennington, started in September 2021. The project aims to learn from the experiences of children and young people (CYP) and their families during the pandemic, using their voices to inform practical policy solutions for the recovery of services and to plan for future emergencies. A key aspect of this project is the Patient and Public Involvement (PPI) work, to ensure the final recommendations reflect the needs and priorities of CYP and parent-carers.
Involving parent carers and young people has been part of the process from the outset. During the development of the project, the management team had consulted with chairs of local Parent Carer Networks in the National Network of Parent Carer Forums and engaged with an active network of practitioners that spans education, health, and social care through The Council for Disabled Children. The parent carers and support organisations have strongly supported the need for the research and have been involved in the design of the study.
Embedding disabled young people and their families into the research team and work
Hannah Merrick is a PHSI Research Associate who has worked on a range of research projects on experiences of healthcare and informal support for young people with complex health needs and their families.
As one of the research associates on the project, one of the first priorities for me was setting up the parent-carer advisory group and the young people’s advisory group. Lucky for me, the project management group includes experts in carrying out PPI work, who can advise us, offer training, and help recruit parent-carers and young people to the groups. We were able to set up and run our first parent-carer advisory group quickly. The group was run online, meaning we were able to include parent carers from different areas across England. We ran the session in the evening at the convenience of the parent carers. We received some helpful feedback about the interview topics and as a result of the session an interview distress protocol was put in place to allow the researchers to respond appropriately to the emotions and distress that may be expressed by parent carers.
Setting up the young people’s advisory group has been more challenging. Recruiting from schools when they have been busy settling children back into school has been difficult. While working online was successful for the parent carer group and has been helpful for young people’s participation in other areas, working online still comes with access challenges for some disabled children and young people. We have been able to organise one group and had a great first meeting with four young people, visiting them at their school. Preparation was key! Lots of planning was done to make sure the young people could participate in the group. We met with the school staff who were helping to facilitate the group and they ran a preparation session with the young people prior to the meeting. This all led to an informative, engaging, and fun meeting. The young people really helped us in making our information sheets clear and accessible and had some great practical and innovative suggestions on how we can make online interviewing easier for young people and different ways young people could participate in the research if an interview is not possible.
Throughout the project we plan to keep building up membership to the parent-carer and young people advisory groups and regularly meet with them at key stages. The advisory groups have decided how they will communicate across the project (e.g., through a Facebook group, by email). We are also using the guidelines by NIHR INVOLVE, ensuring all members are appropriately compensated for their involvement.
Lessons learntso far from this experience of including disabled children and young people in research
Plan, plan, plan: seek advice and help from others with experience and allow young people to prepare for the session.
Be open to being challenged about what will and won’t work: be open to hearing new ideas and being questioned about your chosen approach. And open to making the necessary changes!
Seek feedback from participants: did the group work well for the young people? What would help next time?
What next?
Interviews with parent carers and children and young people will be beginning in the new year. We will be meeting with our advisory groups again to discuss the findings and our interpretations of the results. Our advisory groups will also be an integral part of helping design our national Delphi survey, which will go out to parent carers, young people and professionals to find out their views on draft recommendations and agree key-guidance for policy makers.
More details about the research team and the stages of the research project can be found here.
Mental Health: a Hidden Disability
One of the themes for Disability History Month 2021 is ‘hidden disabilities’. Under the Equality Act 2020, a disability is defined as when a person has a physical or mental impairment that has a substantial, adverse, and long-term effect on their ability to carry out normal day-to-day activities. A mental health condition is considered a disability if it has a long-term effect on a person’s normal day-to-day activities. There are many different types of mental health condition which can lead to a disability, including dementia, depression, bipolar disorder, obsessive compulsive disorder, and schizophrenia.
Liam Spencer, Research Assistant and Dr Ruth McGovern, Lecturer in Public Health share some highlights of their research relating to mental health
Much of our joint work focuses upon mental health, substance use, and early and preventative interventions, particularly in relation to children and families. So, for Disability History Month, we wanted to share with you some of our current and relevant research projects.
Our National Institute for Health Research (NIHR) Public Health Practice Evaluation Scheme (PHPES) funded project, is an evaluation of the Best Start in Life Alliance in South Tyneside. Children and families in South Tyneside have high levels of need, with some children and families being particularly disadvantaged. The practice members of our team worked with local people to develop a new ‘Alliancing’ approach to helping children and families. This approach: brings together the different professionals that support children and families into one team; identifies key people in schools and other settings to help children who may have mental health difficulties; and includes trained young people who want to volunteer to help their peers to live healthier lives. We want to know if this new approach makes a difference for children and families. To find this out, we are working closely with children and families who live in South Tyneside and the people who provide services, undertaking qualitative and quantitative data collection.
Substance abuse may sharply increase symptoms of mental illness or even trigger new symptoms. The mixed-methods European ‘ATTUNE’ study aimed to address a gap in knowledge on what shapes ATS use across the life-course; how to prevent and treat harmful ATS use and what influences different trajectories of consumption through individuals’ lives. A recent publication from this study, reports on a sub-sample of ATTUNE qualitative data collected from participants in the North East of England, and aimed to specifically explore individual experiences of, and perspectives on the relationship between mental health and ATS consumption. The findings help to develop understanding around the complex and bi-directional relationship between ATS use and mental health. Many ATS users lead chaotic lives and engage in multiple risk behaviours, however there is a need to better understand and conceptualise the dynamic interaction between different individual, social, environment and cultural factors that determine individuals’ mental health and substance use. There is no ‘one size fits all’ approach to prevention and treatment, and the findings from this paper highlight the need for more joined-up, tailored and holistic approaches to intervention development.
A project led by SPHR colleagues at LiLac (Liverpool and Lancaster Universities) is aiming to understand the impact of anti-homophobic, bi-phobic and trans-phobic (HBT) bullying programmes on LGBTQ+ young people’s mental health in England. In 2020, the Government Equalities Office withdrew funding of £4million for school programmes aimed at tackling HBT-bullying. This decision is likely to lead to negative consequences for LGBTQ+ young people. Young people who identify as LGBTQ+ are more likely to face bullying and social rejection in education settings such as schools. As a result, they are likely to develop poor mental health compared to heterosexual peers. COVID-19 may cause additional concerns for LGBTQ+ young people as they may not be ‘out’ to their families or live with individuals who are unsupportive of LGBTQ+ identities. A small body of international research has shown a direct link between LGBTQ+ anti-bullying projects and improvements in the mental health of young people who identify as LGBTQ+, however, this has not been explored in the UK. The Creating LGBT+ Affirming School Environments (CLASS) research project is working closely with schools, young people, and third sector organisations to identify programmes with the potential to improve LGBTQ+ young people’s mental health.
What is paternal perinatal mental health? Is it common for fathers to experience psychological distress in the perinatal period? Do fathers have access to support for perinatal mental health?
Many reading this blog will be aware that pregnancy and birth can lead to mental health conditions for mums but are you aware that dads can also be affected? Paternal perinatal mental health refers to the occurrence of mental health conditions, such as depression and anxiety, as a consequence of experiences during pregnancy and birth. Lack of information and support, stigma, exclusion, difficulties in diagnosis, and a lack of focus on relational and emotional change, can all lead to less awareness of the mental health struggles that men can face during this time. On International Men’s Day, we wanted to draw attention to men’s mental health within the perinatal period and how the transition to fatherhood can impact on mental health and wellbeing for some.
The arrival of a new baby brings excitement and joy, but also apprehension, fear, and high expectations of oneself. Existing research suggests that there is a gap between fathers’ expectations of how they believe they should be responding in fatherhood and the reality of how they do respond. When these role expectations have not been met, fathers can be very critical of themselves. This can lead to frustration, anxiety and psychological distress at a time which should be enjoyable and exciting.
Existing studies involving talking to fathers about their experiences within the perinatal period have helped to understand the emotions and distress fathers can encounter. Fathers can feel underprepared, sad or depressed, and isolated from maternity services and decision making. They may experience sleep disturbances and increased alcohol intake, and some experience thoughts of self-harm. Some fathers also find it culturally and socially unacceptable to speak about their difficulties due to not wanting to be seen as weak or vulnerable. Masculine ideals, stigma and inequality within the first stages of parenthood have prevented fathers from reaching out for support. The needs of men are often overlooked as most support for new parents, such as childrens centres and baby groups, focusses on women.
Fathers have reported negative experiences when it comes to accessing current support, if indeed there is any support to access. Their overall wellbeing is not taken into account during this time and they are often directed to seek support from organisations outside of healthcare. This highlights the urgent requirement for paternal perinatal mental health support tailored to father’s needs
It is vitally important that we increase awareness from friends, family and health professionals of father’s mental health in the perinatal period. We need to understand what the barriers and facilitators are to seeking support, and what that support should look like. Research that will be undertaken as part of a PhD, funded by the National Institute for Health Research (NIHR)Applied Research Collaboration (ARC) North East and North Cumbria (NENC), will work with dads of different ages, backgrounds, cultures and family arrangements to reflect the diversity in parenting experience, to gain their insights. It will also work with professionals.
By undertaking this research, we hope to empower fathers to seek support and to co-design support that is tailored to their needs. We are just starting this journey but do get in contact if you would like to know about our plans or to participate in the research.
It is important that we shine a light on this every day but especially on International Men’s Day. We want to make a positive difference to the wellbeing and lives of fathers. By raising awareness of paternal perinatal mental health, we can promote a positive conversation about men and mental health. We want to drive action so that pregnancy and birth is a positive experience for all.
Meet Patience Kunonga – Research Assistant and PhD Student (Evidence Synthesis)
After completing a Master’s program in Public Health at Newcastle University in 2016, I was inspired to join the Evidence Synthesis Group (ESG) in the Population Health Sciences Institute in March 2017. I have gained significant knowledge, experience and skills in evidence synthesis methodologies, and have become one of the core team delivering outputs for the National Institute for Health Research (NIHR) Older People and Frailty Policy Research Unit (PRU).
Prior to my PRU role, I also supported the delivery of the NIHR Innovation Observatory. My research interests include social care, public health and evidence synthesis and I am currently working towards a PhD to develop a bespoke framework for the incorporation of assessments of health inequalities and/or inequities within evidence synthesis. Since joining ESG, I have co-authored peer-reviewed articles in top medical journals such as the British Medical Journal, Journal of the American Medical Directors Association, Journal of Medical Internet Research and Cochrane Database of Systematic Reviews.
Patience Kunonga, Population Health Sciences Institute Research Assistant and PhD Student
COVID-19 – Palliative and End of life care experiences of people of African and Caribbean dEscent (PEACE) Project
As you may gather, previously, my skills mainly involved gathering empirical evidence from a range of sources to inform decision makers or policy changes to promote healthy ageing. However, I am currently working on a project that has taken me out of my comfort zone in terms of research methodology, but I am very excited to be part of it. The project is a qualitative piece of work, seeking to explore the end-of-life-care experiences of people of African and Caribbean descent during the COVID-19 pandemic. It is a collaboration between Newcastle University and University of Manchester, is funded by the NIHR Policy Research Programme led by Dr Felicity Dewhurst, an NIHR Academic Clinical Lecturer in the Population Health Sciences Institute and an Honorary Consultant at St Oswald’s Hospice in Newcastle. For the project, I am the Patient and Public Involvement (PPI) lead, which means I have to engage with the public to ensure their experiences and views are heard. As we celebrate Black History Month, an annual event to honour the history and celebrate the achievements of Black people in the UK, it is fitting that I reflect on how research plays an important role in trying to understand and tackle existing health inequalities, with a focus on how this affects people of African and Caribbean descent.
What is end-of-life care?
End-of-Life-Care (EOLC) refers to the treatment, care and support for people who are nearing the end of their life. It helps people live as comfortably as possible, thereby improving their health-related quality of life in the time they have left. Despite these benefits, it is surprising that one in four UK families miss out on such crucial support, particularly those from African or Caribbean descent. Research into EOLC for this particular group is scarce, probably because they represent only 3.3% of the UK population. However a recent article on the disparities of access to EOLC services among Black, Asian and Minority Ethnic (BAME) groups, suggest that ethnic minorities, as a whole, are less likely to engage in end-of-life care planning activities. I find this quite disheartening as this means that we do not know why engagement is low, despite national research calls for such information. A recent study shows that Black people are 4 times more likely to die of COVID-19 than white people, making it imperative that we understand and redress these disparities. As a Zimbabwean based in the UK, my roots play an important role in some of the decisions I make and I am interested to know whether some of the reasons why Black people do not engage with EOLC services are comparable across cultures.
So, what are we doing?
We have been actively recruiting participants through emails, posters, flyers, social media and a radio appearance. However, the uptake of recruitments is low, and I am going to take this opportunity to make an appeal for your help with recruitment. We are in desperate need and would really appreciate your help to share this opportunity with your wider network.
We are seeking bereaved relatives, health and social care professionals and community workers to take part in the study. We feel that professional carers, regardless of their ethnicity, could offer a different perspective on the subject since they offer a broad range of services and can be diverse in their provision, e.g. who they support and how.
If you are over 18 and you cared or provided support for someone of African and Caribbean descent who died (of any cause) during the pandemic, we want to hear from you. We want to know your views on how EOLC can be improved, particularly how barriers to good care and the inequity of care provision can be reduced.
How to get involved
If you are interested in taking part and would like more information, please email PEACE@newcastle.ac.uk, call 07708 649459 or follow the link below: https://www.opfpru.nihr.ac.uk/get-involved/#PEACE
In summary, my experience with the PEACE project so far has made me realise that Black people are less willing or reluctant to take part in health research. So, as we celebrate Black History Month and honour the historical contributions made by people of African and Caribbean descent, as academic researchers, we need to reflect on effective ways we can engage and attract people of African and Caribbean descent to take part in health research.
A wonderfully informative article on a very important topic, by a dear friend of mine. Shame as a pressing issue…