I am a parent of a disabled teenager. My son is in and out of hospital and school. His learning disabilities and behaviour issues are a barrier for him, and he is teased because he limps. At home, he swears and punches me.
He has a referral for his anxiety, which the neurologist thinks could stem from an autistic spectrum disorder. He is on a waiting list somewhere for that. Meanwhile, there are hospital appointments to manage, at least four consultants on the go, and an imminent transfer to adult services. The bureaucracy of caring keeps me busy.
I used to work in the theatre industry but had to quit when my son kept getting excluded from school. I never expected that my life would turn out like this. But now, amazingly, I am doing a PhD at a Russell Group university, looking at non-white protagonists in historical drama. It is fascinating: under-represented characters! Hidden histories! Diversity!
I am starting to win awards for my research and I feel like a success story. Almost. There’s just one problem: I can’t get funding. I keep missing out on studentships and scholarships. These awards – which are mainly funded by research councils or universities directly – are worth about £14,000–£16,000 a year and usually include a fee waiver (saving a further £5,000). That’s a lot of money.
But the funding tends to go to students half my age with straight-A academic results – not to people like me, who have taken an unusual path to academia. When I was turned down for the last studentship I applied for, I asked why. The decision maker – a professor in my department and the head of a research institute – told me “it all comes down to stellar academic results”.
They don’t say this on the application forms; it’s all about the originality of your project, your research statement, your supervisor’s supporting statement, the panel that considers you, the level of competition. But when it comes down to it, this is clearly what they want. Someone with my background is never going to get a studentship if the decisive criteria are undergraduate and master’s results.
A poor excuse
People like me, in the diversity and inclusion basket, are told to search through the Alternative Funding Guide. This is where my university’s funding office directed me. My graduate school offered an Alternative Funding Guide training session, and my second supervisor simply said: “I’m told that writing lots of letters does the trick.” The Alternative Funding Guide is the university’s excuse for not serving vulnerable groups of research students.
I would need to be a professional full-time fundraiser to raise the equivalent of a £14,000 studentship. I worked out that even if I was successful at all the funds I applied to, the maximum I could raise would be £6,000 – far short of a studentship.
And these studentships come with all sorts of other benefits: they have welcome drinks and canapés, there are extra funding streams to support conferences and research trips, there are the retreats, the conferences, the Christmas parties.
When I started my PhD and realised that I would need financial help, I went to the student advice office and told them that I am a carer. They asked what that meant and then offered me advice on benefits, but not funding. I went to the student union advice service – they referred me back to student advice. I went to the graduate school. Same response. I spoke to a vice dean and a chaplain. I had to tell them what a carer is. You get the picture. I was invisible. So I gave up, decided to apply annually for the studentships and kept my part-time job.
This is discrimination and it is self-perpetuating. We only fund those who have already achieved, and we fund them to continue to achieve. The rest of us trying to climb the ladder can source our own drinks and canapés, we’re not invited to the party. Yet, as fee-paying students, our universities still want to take the credit for our determination and brilliance.
I will always be a carer of a disabled child. This is going to impact my career in academia now and forever, and I know this. Will I be able to juggle research and lecturing in a university with my son’s hospital appointments? Will I have to explain what it means to be a carer each time I start a new job and in every department – HR, faculty, department office, and so on?
Ucas announced this year that young carers will now be able to identify themselves in their applications, so that universities will be able to support them. But how is this going to happen if staff at these institutions don’t even know what a carer is?
The student welfare vice-president at the union has finally agreed with me that carers are an under-supported and under-represented group on campus. We are going to ask student records to add an option to the equality and diversity monitoring section, so that we can identify as carers and hopefully raise awareness. Wish us luck.
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