In recognition of Carer’s Week, we are publishing a very special, anonymous story of a PhD student at King’s, who is also a carer for her son. You can find out more about Carer’s Week on their website, check out the many events happening at King’s, and see the many messages of support for carers from the King’s community on the KCL Diversity Twitter.
I became a carer when I became a parent. I was a carer when I returned to academia to become a PhD student. I have been a carer for 19 years and a PhD student for six years. I will be a carer for the rest of my life.
I am also a researcher in a ground-breaking, exciting multidisciplinary field, working an exciting new discipline, with a public engagement track record and sought after as a lecturer at a number of universities in the London area.
But I need to take a break to appeal my son’s PIP decision. This is the second time I have had to do this during my PhD. The last appeal took eight months. My son won, of course. I have also spent the last two years trying to get our local Adult Social Care team to recognise that he is eligible for support under the Care Act. If I stop supporting him, who will?
I was genuinely astonished when I came to King’s in 2013 to find that there was no support for and no recognition of carers. No financial support: no bursaries and no fee waivers for example. And no support networks. And I looked everywhere. I went from faculty to department to doctoral studies to funding office to various student advice and support teams and representatives and so on. One year I was introduced to the KCLSU president who said to me: ‘Oh I know about you – you’re the student carer!’ It was as if I was asking to go to the moon. Except for the Chaplaincy – they got it, and they were great.
In my life outside academia I had led parent-carer support and advocacy groups, I had considerable experience in engaging with statutory authorities and policy makers, and was a trustee for the national charity supporting my son’s disabilities.
After all these years of campaigning – it was about 12 years or so, I really thought we had managed to make a difference in this world – why was I having to start campaigning again and alone for my own case as a self-funded PhD student carer? Does it piss me off that there is no discretionary funding or scholarships to support carers to do postgraduate research and that we are competing with straight A students, with no space to disclose our circumstances? Why yes, it does!
After a few years I decided not to be angry and to find my own way through academia, and I am happy! I found my niche and my tribe, people who share the same view of academic working style and research outputs. I no longer feel inadequate and excluded when someone talks about their 60 hour week as a lecturer.
I have started to develop a research methodology and output that engages with diversity and has public engagement impact on diversity. This is one hundred percent related to my experience of raising a child with a life-limiting illness, brain injury and disabilities that meant he was often hospitalised, sometimes in intensive care, frequently excluded from school until he was sent to a residential boarding school and lived in a children’s home setting from Monday to Friday, and from the violence I have experienced from him.
But for now I have managed to keep my sense of humour and my health. I love my son, I have a supportive supervisor, partner, dog, and a strong network of like-minded researchers, I take my daily anti-depressant, I am happily plodding along with my never-ending PhD, I enjoy my new career as an hourly-paid lecturer in my unique and ground-breaking multidisciplinary specialty (I put that in twice on purpose, makes me feel good to say it), my son is staying safe and out of hospital, his seizures are under control … it never ends.