When I saw the words ‘Cabinet Office’ on the envelope my initial thought was ‘am I being deported?’ Then I saw a jumble of words including ‘King’, “His Majesty’ and ‘Member of the Order of the British Empire’ and it eventually dawned on me that I was being recommended for an MBE for services to the National Health Service. Confusion shifted into disbelief, excitement, imposter phenomenon and then concretised around the question of whether to accept it.

Much of my equity-related research and leadership centres on challenging racism and sexism. Systemic racism and sexism are ingrained within institutions and within every Western society, including the UK. This is why some anti-racist activists like the late and very great poet Benjamin Zephaniah have chosen not to accept nominations to the Honours List and not to become part of what they consider to be a structurally racist system.

However, my leadership journey has led me to believe that what constitutes activism is different for each person. Taking stock of where a person most wants to deliver change and how they will do it most effectively is an individual decision. I believe that courage or cowardice can only be determined from within. Accepting the MBE feels consistent with the change I want to bring about and how I can deliver it.

My medical leadership journey in the equity world began when I had to decide whether, in the face of experiencing sexist trolling, I should challenge it from within the system, find other forms of protest or simply ignore it and move on. I chose to engage from within the medical establishment as President of the Medical Women’s Federation and within academia, as the Athena Swan (Gender Charter) Chair and Academic Equity Diversity and Inclusion Lead at the Queen Mary University Faculty of Medicine and Dentistry.

My equity leadership soon morphed into activism for LGBTQ+ doctors and academics. I was asked by the Royal College of Physicians and others to write ‘role-model’ profiles which surfaced experiences of homophobia as teachable moments. I permitted rainbow-adorned video interviews to be published online. I accepted nominations to be named as a Top 100 Lesbian Influencer in the UK and US. Life would have been easier doing my day job under the radar. However, gay colleagues in countries where homosexuality is illegal and junior colleagues in the UK told me that my visibility and representation made them feel more hopeful about their own career prospects. As Billie Jean King said: ‘You have to see it to be it’. Invitations to speak on leadership and intersectionality on podcasts and at conferences (like the BMJ Leader Live and the Academy of Medical Royal Colleges) grew.

More recently, my much more faltering, and emotionally taxing journey into the world of disability rights activism was born in the BMJ Leader with my self-reflective piece entitled ‘Reflections and intersections: disability, ‘ableism’ and metamodern leadership’ . I explored how, in learning the term ‘ableism’, I found the words to both describe and understand my experiences of structural ableism. This helped me to focus on how I might be helpful in countering ableist beliefs in others.

For instance, the belief that people with disabilities take advantage of their situations, that they are ‘scroungers’. This may relate to lack of trust in their account of their situation and/or needs and/or to negative media portrayals. Or, the belief that disabled people, because of their health issues, are less able to achieve, are less reliable and less productive than people in non-disabled bodies. The existence of these beliefs is borne out by the disability employment gap and the disability pay gaps- fewer people with disabilities are in the workforce and even fewer reach the top jobs.

Nobody likes to learn that they haven’t been inclusive toward a person with a disability. So, speaking up on my own behalf against casual or less casual ableism in a professional context is the most uncomfortable activism I have ever done. I find self-advocacy exposing. It engenders reputational fears of being seen as untrustworthy, of exaggerating my own situation, of being disliked and of hampering my career prospects. When I self-advocate around hidden disability, I try to make it a positive interaction with a teachable moment. I also understand that educating people about ableism takes my time and energy. This is, in effect, a form of tax. The ‘time tax’ associated with gender and race equity work has been well-described and is equally relevant here.

Another way to challenge these assumptions is to create the narrative I want people to consider. This means writing pieces like this one, delivering podcasts, webinars, and plenaries for people in power like funding agencies and leadership organisations (eg. Faculty or Leadership and Management Medicine, Wellcome and UK Research and Innovation Council) and leading research on disability in the workforce.^1-5. Importantly, the simplest form of activism is allowing myself to be seen and heard as a gay clinical Professor and medical leader who also lives with disability. It means not disowning any part of my identity. In short, it means me being me.

By seeing someone like me accepting this MBE, I hope that people will see that people like them can and are being recognised for their contributions in our society. I want this deeply for other people out there who are experiencing sexism, homophobia, ableism, or any kind of discrimination.

Having thought all of this through, I have settled on feeling profoundly moved that I was considered to have made a meaningful contribution to the National Health Service. I feel very grateful to those that took the time to nominate me. I have worked in the NHS since 1998 and walked proudly behind the NHS float at Gay Pride. The NHS has given me so much, including my wife of 23 years and most of my dearest friends. Serving NHS patients and my NHS and academic colleagues will motivate me for the remainder of my career.

References:

1. Saloniki E-C et al. Staff disability data in UK higher education: Evidence from EDI reports; Med Humanit 2024; 0:1–6. doi:10.1136/medhum-2024-012892
2. Cevik M et al .Gender disparities in coronavirus disease 2019 clinical trial leadership. Clin Microbiol Infect. 2021 Jul;27(7):1007-1010. doi: 10.1016/j.cmi.2020.12.025
3. Howe A et al. Gender and ethnicity intersect to reduce participation at a large European hybrid HIV conference. BMJ Lead. 2023 Nov 8:leader-2023-000848. doi: 10.1136/leader-2023-000848.
4. Wan YI et al. Clinical research in the NHS: a cross-sectional study of research engagement during the monkeypox pandemic; BMJ Leader 2023;7:1–7. doi:10.1136/leader-2023-000812
5. Howe A et al, The under-representation of racially minoritised doctors in academic general practice training. BJGP Open. 2023 Dec 21:BJGPO.2023.0136. doi: 10.3399/BJGPO.2023.0136.

Author

Chloe Orkin

Chloe is Professor of Infection and Inequities at Queen Mary University of London and directs the SHARE Research Collaborative for health equity. She has been a Consultant HIV Physician at Barts Health NHS Trust since 2003. Her research focuses on viral therapeutics and on equitable inclusion in clinical trials. She was advisor to WHO Europe during the Mpox pandemic. Chloe has held multiple leadership positions including Chair of the British HIV Association, President of the Medical Women’s Federation (MWF), Academic Equality Diversity and Inclusion Lead and Athena Swan Chair for the  Faculty of Medicine and Dentistry at Queen Mary University of London. She is a member of the governing council for the International AIDS Society and a scientific advisor to the Medicines Patent Pool.

Declaration of interests

I have read and understood the BMJ Group policy on declaration of interests and declare the following interests:

I have received honoraria for lectures, advisory boards and/or travel scholarships from ViiV Healthcare, Gilead Sciences, Merck Sharp and Dohme,  Bavarian Nordic, Clinical Care Options, Medscape and Peer Voices. I have research grants to my institution from ViiV Healthcare, Gilead Sciences, Merck Sharp and Dohme,  Astra Zeneca. I am patron of the National HIV Story Trust, Governing Council Member of the International AIDS Society, Scientific Advisor to  the Medicines Patent Pool and Patron of the National HIV Story Trust. I am employed  by Queen Mary University of London and hold an Honorary Contract at Barts Health NHS Trust