Disabled People’s Unpaid Work and Academic Ableism

Recently, I’ve been writing about inclusive and co-produced research projects. I’ve been talking about how disabled people should have a leading role in research about us. I’ve been saying that we should pay disabled people, as co-researchers. Disabled people have often been exploited in research that ‘parachutes’ into our communities, extracts our knowledge and gives us nothing in return.1 That’s why I think co-produced and activist disability research is so important.

But everything I’ve been writing has been about disabled people as research participants. Academics still can’t quite imagine that disabled researchers exist.2 The only discussion of academic ableism comes from disabled researchers ourselves, writing about the barriers we face to employment in academia… and about how many of us are doing unpaid work.

So let’s start with why asking disabled people to do unpaid work is a problem.

Are You Asking Disabled People to Work for Free?

If you ask disabled people to work without payment, please consider what you’re asking. Think about the context.

First, you’re asking for free labour from people who are routinely asked to share our experience (lived and professional) without payment or recognition. This unethical practice has been happening to disabled people for a long time. It happens if our work is based on our lived experience, or if we have professional expertise on disability. And it happens if we’re doing work that has nothing to do with disability at all— when we’re just ‘working while disabled.’

Second, you may be asking someone to give up much more time and energy than you realise. Think about access barriers, in a deeply inaccessible society, and the work we have to do to negotiate them. Think about the impact of chronic illness and limited capacity for work. A talk that would involve a couple of days work for a non-disabled person might take a week for some disabled people — leaving us less time for paid work.

Third, disabled people face barriers to employment and a disability pay gap, thanks to ableism in a capitalist workforce. That often leads to poverty. Against that background, asking us to do unpaid work is — you’ve guessed it — exploitation. I regularly find myself sitting on committees and panels with non-disabled people who do this as part of a paid role… and disabled people who are giving up their time for free. In practice, I often work for less than minimum wage in freelance roles. And most of my academic work has been unpaid, for the past few years, ‘for my CV.’ But the expectations of unpaid work just go on and on.

Don’t get me wrong — I’ve been delighted when (usually fellow disabled or neurodivergent) friends have given me opportunities to speak at their universities or churches. I’ve been grateful for their work to make sure expenses are covered or there’s a hotel room for me afterwards. I’ve been really impressed by a few colleagues, also usually disabled or allies, who’ve paid me consultant rates to advise on projects. But these are rare exceptions.

I will always speak pro rata for activist and disabled-led groups, because I want to spread the word about disability, justice and churches. But underpaid or unpaid work for strangers who know nothing about disabled people and exploitation, especially in academia, is becoming a problem for me. And I’m propping up an ableist system when I accept it.

Academic Ableism and Unpaid Labour

Disabled people in academia have written about the unpaid labour we have to do, that non-disabled academics do not.

Some of this unpaid work is about trying to make ourselves fit in professional settings where we misfit.3 Stephanie Hannam-Swain says she has “an extra workload which is equivalent to having another part time job”.4 My negotiations with Access to Work alone have taken up far too many hours this year, and caused a whole lot of stress. That story reached a depressing conclusion when AtW refused to give me any support for my freelance work. Instead, I either use my partner as my unpaid PA — which I feel a whole lot of shame about5 — or I pay for a PA from my own funds for a day.

And then there’s the academic unpaid labour. Armineh Soorenian writes powerfully about the academic ableism that has kept her out of university employment for years. She talks about all her unpaid research work — journal articles, book chapters, guest lectures, and all the other work she was told would lead to academic jobs, but did not. For most academics, this work makes up part of a paid role. For independent disabled scholars who cannot find stable university employment because of academic ableism, we’re doing this for free.

I guest lectured multiple times last year; each talk took up about a week of my work time (if you factor in travelling on inaccessible transport and getting around inaccessible university venues and time for recovery from all this), leaving less time for my paid consultancy. I’m currently working on three articles and chapters — ‘publish or perish’. And because I’m only able to work part time, that writing is taking up most of my capacity for work, leaving no time for paid gigs.

When I add everything up, being an independent researcher costs me money. I have no university library access, which means expensive, inaccessible trips to the British Library in London, 30 miles from my home. I have no institution to fund the conferences I am expected to attend — some conferences have kindly offered me funding, but some say they can’t afford bursaries, not even for disabled people. And if I bring PA support to conferences, all my expenses double.6

Unpaid academic labour can be a dilemma for disabled people who know we will never get work without it, but who also know we don’t have great chances of finding stable academic work even with all that unpaid labour on our CVs. I’m beginning to think it’s no longer my priority to share my limited energy and hard-won expertise with my profession for nothing, when employment in that profession is so unlikely because I’m disabled. Because of structural ableism.

What kinds of structural ableism? Here’s a few examples.

  • Academic conferences. They’re not just expensive — they’re also minefields of physical and neurodivergent inaccessibility. I’m expected go anyway.
  • Mobility in employment. I’m expected to be willing and able to cross the country for an academic job at a moment’s notice. But my care support would disappear if I moved house, so there are few jobs I can practically apply for.7
  • “Networking,” the mystical practice that still means little to me, an autistic person. I’ve been accused of lacking the confidence it takes to succeed in academia, when what I actually lack is nothing but the required neurotypically-social brain.

And then there’s the direct disablism.

  • Discrimination. Like the interviews where my reasonable adjustment requests are turned down, with the excuse that all applicants must be treated exactly the same (not true, if you look at equality law).
  • Inaccessible workplaces. Like when I worked for employers who admitted they had no safe way to evacuate me in an emergency and were going to do nothing about it, and where they made me walk down two flights of stairs every time they had a fire practice. (I was so ill after one drill, I was off sick for the next two days.)

I’ll stop there, or we’ll be here all day, but there are so many barriers.

Unpaid Help with Disability Research

In the past year, I’ve been asked six times to give unpaid help with research or organisations’ work. (Yes, I’ve been counting.) Usually, I’m approached for help with research or practice on disability and religion, by people who know of my work. I’ve been asked to meet people to give advice. I’ve been asked to share my research contacts. I’ve even been asked to help with research methods. All unpaid.

The first time I agreed to a meeting like this — for which the staff member was paid and I was not — they went on to ask for further unpaid meetings. They had specific questions about what my research findings might mean for their organisation’s theory of change. They said it would “only” involve another couple of hours of discussion, and also would I please come to speak at their organisation’s meetings. No mention of payment. (I sent details of my training rates, and suggested they read my book and thesis. I never heard from them again.) As for sharing research contacts, I’ve built relationships over many years through my attempts to do ethical research with disabled Christians, and I expect other researchers to do the same.

Sometimes I’m offered a token payment for work like this. On more than one occasion, that payment has never actually materialised. I now try to insist on contracts signed in advance for paid work… but I’m getting pushback.

Let’s be clear — there are researchers I want to support. I’m not talking here about the peer support I offer to postgraduate students or fellow disabled people taking their first steps into research in disability and religion. Many of my postgrad and ECR colleagues gave me that kind of support, and I want to pay it forward. There are not enough disabled researchers working in disability theology or religious disability studies. We need to support each other, if that’s ever going to change.

But when I’m approached by someone who has a paid role, and who knows that my research expertise could benefit their research project, and who is claiming they want to do ethical research with disabled people… it might be ethical to offer some kind of remuneration to a disabled advisor. Yet that rarely happens.

Disability: Too Niche to Pay For?

I’m a professional. My research on disability and religion is well regarded. I have years of disability equality training experience. Yet little financial value is given to my work. It’s hard not to think that this is ableism. I’m an independent researcher because I’m disabled. That makes me easy to exploit, with no university supporting me. I’m always eager to offer guest lectures, curriculum advice, writing for publications and more, with the hope that these projects might help me overcome disability employment barriers. But it’s deeply ironic that when I lecture in ethical disability research, I am offered nothing in return — usually not even expenses to help with the extra costs of getting to and around inaccessible academic venues.

And I think a lot of this is also because I work in disability studies.

I’ve been told that there’s no “market” for disability theology, and that my work is too “niche,” with the implication that my subject and expertise are not important. That’s ableism, too — believing that the concept of disability is irrelevant to non-disabled people, and that disability theology is just “an adage on the margins of Christian pastoral theology”8 rather than an essential theology of being human, one that touches all body-minds, and is relevant to everyone.9

Disability is a niche topic because non-disabled people decide it is. I believe that, if disability studies and disability theology were truly valued in academia, and by churches, that might start to shift the values of an ableist system.

Soorenian says she is disappointed that disability studies, which is so focused on inclusive research, does little to combat academic ableism. She writes that “even the field of Disability Studies is somewhat removed from employing or working with disabled academics, especially those without affiliation to any institution. Instead the field is recruiting non-disabled people who have little experience of disability or indeed impairment. This exclusion seems to be grounded in society’s failure to accommodate the needs of disabled people.”10

Maybe one day, disabled people will be valued for our expertise, both lived and professional. But in the meantime, working ethically with disabled people is my priority. Which brings me back full circle. Nothing about us without us is at the heart of my research values. And maybe that ‘us’ could include me.

Find funding to pay disabled people, if you want us to work for you. Show that you believe our expertise and lived experience are worth it.

Notes

  1. As I wrote about in At the Gates: Disability, Justice and the Churches (2022), drawing on the emancipatory disability research paradigm. ↩︎
  2. Kay Inckle (2018). Unreasonable Adjustments: The Additional Unpaid labour of Academics with Disabilities, Disability & Society, 33:8, 1372-1376.
    https://doi.org/10.1080/09687599.2018.1480263 ↩︎
  3. Rosemarie Garland-Thomson (2001). Misfits: A Feminist Materialist Disability Concept. Hypatia 28(3), 591-609. https://doi.org/10.1111/j.1527-2001.2011.01206.x ↩︎
  4. Stephanie Hannam-Swain (2018). The Additional Labour of a Disabled PhD Student. Disability & Society, 33:1, 138 142. https://doi.org/10.1080/09687599.2017.1375698
    ↩︎
  5. Especially when I think about the exploitation of women (and others who are not men) through unpaid caregiving. But I appreciate Lois Keith’s argument that research on gendered caregiving should not polarise the oppression of disabled people and carers. These forms of oppression are related. My partner must interrupt their work to support me because I am not supported by the state. Lois Keith (1992). Who Cares Wins? Women, Caring and Disability. Disability, Handicap & Society, 7:2, 167-175. https://doi.org/10.1080/02674649266780191 ↩︎
  6. Armineh Soorenian writes about many of the same structural issues in academia as I do here, including having to rely on her partner, friends and family for professional support. Armineh Soorenian (2021). At the Margins of Academia – On the Outside, Looking In: Refusing, Challenging and Dismantling the Material and Ideological Bases of Academia. In M. Berghs, T. Chataika, Y. El-Lahib & K. Dube (eds.) The Routledge Handbook of Disability Activism. Routledge. https://www.routledge.com/ ↩︎
  7. Job mobility for academic researchers is another issue explored by Soorenian (2021). ↩︎
  8. Doreen Freeman (2002). A Feminist Theology of Disability. Feminist Theology, 10(29), 71-85. https://doi.org/10.1177/096673500200002907 ↩︎
  9. If you think it’s not now, one day that will change, when you either acquire impairment with age, or become a carer for a disabled family member. Start thinking about it. ↩︎
  10. Soorenian (2021). ↩︎