Stef Benstead, disability rights campaigner

Tell me a little bit about yourself?

I’m a Christian and a Cambridge graduate. I had started a PhD in Cambridge in conservation science, looking at how habitat loss and climate change affect two of the birds that live in the south UK, but had to withdraw after I became ill. I’ve been back in Manchester, living with my parents, for the last four years.

I became involved with the Spartacus network after the publication of their first report on the government’s move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP), and have since done a number of reports with them on Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA).

What disability are you suffering from?

I have some combination of Ehlers-Danlos syndrome (EDS) type 3, ME/CFS, fibromyalgia, possible hypersomnia (just exploring that at the moment with my doctor), and all the associated problems (eg POTS).

The main effects are widespread fatigue and pain with severe brainfog and often a desperate craving for sleep … even when I’ve slept a lot! I struggle to work and can’t live independently.

What is the main thing you aim to achieve in your campaigning?

Replacement of the Work Capability Assessment with a suitable assessment.

A suitable assessment is one that robust, unbiased, and appropriately
formulated research has established as adequate at determining who does and does not have health-related barriers to work.

How is scholarly research of use to you in this?

It’s vital. The academic process and peer review means that much of the work I can’t access is of superior quality to the work that I can access. It is also of wider scope, providing useful insight and different ways of thinking. A lot of my work is based on drawing conclusions from the available evidence and presenting it to MPs, as they don’t have time to do that themselves — and with the rapid turnover of cabinet positions, it’s vital to get new ministers up to speed as quickly as possible. If I can’t read the evidence, I can’t present complete work, and I will miss out on valuable ideas and data.

What routes do you use to get hold of the research that you need?

I ask people who I know have access to download the paper for me. Occasionally I ask authors directly for copies but I rarely get a response, which I think is reasonable — if researchers sent copies of their papers to everyone who asked they might end up inundated with requests! Alternatively, JSTOR allows one to “borrow” some papers for a short time, which I have done for a few papers.

I don’t use pay-per-view — it’s too expensive.

What would you say to scholarly publishers who argue that those who need access to the literature have it?

Hahahahahaha.

Those who need access to the literature don’t have it! There are so many people outside of academic institutions who can’t access papers. Even when I did have an Athens log-in (as an undergraduate) I still didn’t have access to all the journals relevant to my field, and I have seen the same problem in my friends’ fields. This can be very frustrating, as sometimes it is the most interesting-looking papers that are inaccessible!

Additionally, it isn’t the publishers’ work to control. It is the work of the authors, with contributions from reviewers, both of whom are (usually) funded by the UK government, or sometimes by charitable bodies. The people who fund the work are therefore tax-payers and those who give to charity, i.e. the general public, and the general public should have access to the work they pay for.