When I was asked to present, I struggled to decide on what to present. As a PhD student my research has at times become my life, but as a disabled woman my identity has permeated into those studies and influenced them and my ability to engage with the university.
Everyday ableism is something we all face, and unfortunately it is a form of oppression that isn’t as well known as others such as homophobia, racism and sexism. It is something that as a disabled person I face every day such as when I was at a bus stop and a random man informed me that “it was good to see someone like you out and about” has fuelled my passion to continue to try and challenge systemic barriers that exist
I am aware that my position as a disabled student doing a PhD is unfortunately not as common as it should be, A report from the Department for Education in England[1] in 2019 found that 60% of disabled students were not receiving the support they are entitled to via their disabled student allowance due to confusion over what disability is and poor awareness of the funding[2]. In fact, major changes to the way in which disabled students are assessed for their support are at risk due to government plans, which some fear risk turning it into a replica of the PIP system[3].
Many students don’t disclose their disability due to fear of discrimination, and this is something I initially did when I went to university. I did inform the occupational health assessor but was told to keep quiet as it would risk my time at university. It led to a culture of silence and everyday ableism which led to my health worsening. By the time I did disclose and seek help it was too late, the funding took so long I was going on medical leave by the time it arrived, and I was eventually forced out due to lack of reasonable access accommodations. Unfortunately for many disabled students at university this is a relatable experience.
If you manage to overcome the hurdles to access funding to support your education, the next issue is the accessibility of the university itself. How does it deal with disabled parking? Will halls be accessible? What about the classrooms? How a university treats disabled students will reflect on a wider culture of equality and the infrastructure of the buildings and the campus can reflect on a wider social perception of disability and disabled students.
When I did disclose, I had a disability when I first went to university, it came after a long time in denial there was even an issue, I didn’t think I was disabled or could apply for support due to confusion over what disability is. It was only when I realised that my ongoing health issues were disabling me from doing things, not only due to symptoms but because of institutional barriers that didn’t accept deviation from the normative and accommodate.
The American air force once had an issue with pilots crashing for no discernible reason. There was no pilot error or malfunction in the places. They held multiple inquiries and eventually looked to the cockpit. The original cockpit had been designed off of hundreds of pilot’s dimensions in the twenties, and for three decades there had been a standardised cockpit, the numerous crashes, with at one point, 17 pilots crashing in a single day had caused them to explore other options such as the cockpit shape and size. The air force had 4000 airmen’s measurements taken in 10 physical dimensions to find the perfect cockpit that would suit everyone. Unsurprisingly didn’t work as there is no such thing as an ‘average’ person. As the air force discovered, if you’ve designed a cockpit to fit the average pilot, you’ve actually designed it to fit no one, it led to an overhaul of their design philosophy and adjustable seats.[4]
Humans are not one size fits all, we are individuals with various needs, different life experiences and this is something that needs to be understood throughout society.
My hope is that my research will help to add to the historical narrative of disability, to educate and inform today’s society and help to chip away at the societal barriers not only through showcasing the lives and stories of our community in the past, but using my platform as a disabled student to make the university more accessible for future students.
“Disabled” as a category evolved in the context of the industrial revolution which developed a work ethic that would punish those who were unable to keep up with “the speed of factory work [and with] time-keeping and production norms”[5] in doing so, it created the notion of what a ‘useful body was, with one factory inspector in 1846 stating that, “sound limbs are a main part of the working man’s capital, and they should be exposed as little as possible to the risk of irrevocable dim inution“[6] Therefore, those who had “impaired labour power”[7] had few options within society when their body didn’t fit what was considered an economically viable one. This left those who were unable to work and support themselves in a position of vulnerability and seen as a burden within the economic system. This economic ideology along with a push towards self-help in religious and political discourse’s led to increased condemnation of those unable to work.
The 1834 English Poor Law was meant to help distinguish between those who were deserving, and those who were the undeserving poor. To be deserving you were poor due to no fault of your own such as illness, disability and age, and were unable to provide for themselves, however the undeserving were seen to be work-shy and burden on the state. Although those who were disabled still had to prove their ‘worthiness’ to be classed as deserving and being disabled didn’t automatically equate to being deserving.
The renewed focus on poverty via the Poor Law led to reports at the time describing the ‘evils’ of the methods of relief[8]and accusations that those who applied for relief were greedy and not actually in need, ‘[r]eformers of the poor laws protested that the poor pretended to be needier than the facts warranted’[9]and that it was too lenient, easy to access and led to people actively seeking to be paupers in order to benefit from the law. This pitted those in need to help and unable to work against those in work, and was presented as a drain on the finances of the rate payers and a process that impacted the morality of nation.
If you were to replace the dates and laws you could be forgiven for thinking I was speaking of the present, This is why the past is important to the present. The current situation in the UK with Personal Independence Allowance and Disabled Student Allowance, along with austerity which has impacted disabled people disproportionately seems to suggest that we haven’t learnt from the past and more specifically the Victorian era of the deserving and undeserving poor. Society has defined disability with basic iconography, such as the disabled parking or bathroom symbol, suggesting that this is the only form of disability when only 8% of disabled people are wheelchair users[10], and even then this might not ensure the government deems you deserving or disabled enough. Juxtaposed with this system there has been a sharp and disturbing rise in hate crimes against our community across the UK[11].
We as disabled people are deserving, whether we are poor or not, whether we are working, in education or volunteering. Regardless of what we are doing, we are members of this society and bring a wide range of experiences and skills to it.
In a time when disabled people across the UK according to the UN are having their human rights violated[12] it is important to challenge this across numerous fronts, not solely a political front, but through education. Florence Nightingale was disabled[13], and described herself using a term of the time, ‘invalid’ one I use only within the historical context as no-one is invalid. She once said, ‘I am an incurable invalid, entirely a prisoner of my bed (except during a periodical migration) and overwhelmed with business’[14]. For her, there was no conflict with identifying as disabled and working as a Nurse and yet there is a conflict in how her story is told and taught, because her disability is hidden and erased from her history.
My research seeks to bring forth disabled figures in the past so that we as a community can have an accurate depiction of our past, but to showcase to society that our lives and our histories are valid, whether we are a factory worker, a nurse, or not in work at all. By ensuring representation, not just in modern media, but within historical narratives, we can chip away at the societal barriers that exist and gives legitimacy to harsh policies that impact disabled people. We have been an after thought for too long. By knowing our past we can see how far we have come, or not, but also educate and inform society to challenge their at times one-dimensional views of disability. This is especially important, as disabled people are a growing demographic in our population, in fact 1 in 4 of today’s 20 year-olds will become disabled before they retire[15], and their past is as important as any to be documented.
[1] Claire Johnson, Helen Rossiter, Becky Cartmell, Manuel Domingos and Siv Svanaes, IFF Research. ‘Evaluation of disabled students’ allowances’ (London: Department of Education, 2019) p.25.
[2] Beth Rose, Disabled Students’ Allowances: Over half of eligible students miss out (2019) <https://www.bbc.co.uk/news/disability-47651296> [accessed 3 February 2020].
[3] John Pring, Student reform confusion ‘risks turning assessment system into PIP replica’ (2019) <https://www.disabilitynewsservice.com/student-reform-confusion-risks-turning-assessment-system-into-pip-replica/> [accessed 3 February 2020].
[4] Todd Rose, The End of Average: How We Succeed in a World That Values Sameness (New York: Harper Collins, 2016).
[5] Oliver, Michael. The Politics of Disablement: A Sociological Approach. New York: St. Martin’s, 1990 pg27
[6] Reeve, Robin M. The Industrial Revolution, 1750-1850. London: U of London P, 1971 pg186
[7] Hevey, David. The Creatures Time Forgot: Photography and Disability Imagery. New York: Routledge, 1992 pg15
[8] The term ‘evils’ is used frequently in connection with discussion of outdoor relief in official Poor Law documentation. See, for example, Report from His Majesty’s Commissioners for Inquiring into the Administration and Practical Operation of the Poor Laws (London: B. Fellowes, 1834).
[9] M. Grogan, ‘Generosity and the Ghosts of Poor Laws Passed’, Narrative, 12:2 (2004), 151-166 (p. 152)
[10] Disability Sport, Facts and Figures About Disabled People in the UK (2014) <http://www.disabilitysport.org.uk/facts-and-figures-about-disabled-people-in-the-uk.html> [accessed 1 February 2020].
[11] BBC, Disability hate crime: Number of reports rising (2019) <https://www.bbc.co.uk/news/uk-england-49975697> [accessed 1 February 2020].
[12] See Thomas Goulding, What the UN says about the UK’s treatment of disabled people (2017) <https://www.independent.co.uk/news/uk/uk-disability-rights-un-report-government-treatment-disabled-people-a7616101.html> [accessed 1 February 2020]. And BBC, UN: ‘Grave’ disability rights violations under UK reforms (2016) <https://www.bbc.co.uk/news/uk-37899305> [accessed 1 February 2020].
[13] See Kudzma, E.C., 2006. Florence Nightingale and healthcare reform. Nursing science quarterly, 19(1), pp.61-64. Cohen, I.B., 1984. Florence nightingale. Scientific American, 250(3), pp.128-137. Young, D.A.B., 1995. Florence Nightingale’s fever. BMJ, 311(7021), pp.1697-1700.
[14] Miriam Bailin, The Sickroom in Victorian Fiction, 4th edn (Cambridge : Cambridge University Press, ), p. 1.
[15] Social Security Administration, The Faces and Facts of Disability (n.d.) <https://www.ssa.gov/disabilityfacts/facts.html> [accessed 2 February 2020].
PhD Life and Research 