For those with little experience of disability, it can be easy to believe that disabled students are provided with all the support they require for their studies. Stephanie Hannam-Swain offers a personal insight into life as a disabled PhD student, highlighting the many issues and potential complications around aspects of disability policy. Disabled students also face the difficult decision of how much to disclose about their impairment and how this is likely to affect them. Issues such as these are considered “secondary” to a main impairment, and are often necessarily concealed or ignored as students work to the same timescales and expectations of suitable output as everyone else.
For people with little or no experience of disability it may be easy to believe that disabled people get all the support they need at university. There are systems in place ensuring their needs will be met, and on those occasions they do face problems it’s down to the individual to be more flexible or just to accept the status quo as a “natural consequence” of their impairment. As a disabled student, having studied on and off at university-level for ten years, including my current undertaking of a PhD, I can confirm that this is not the case, and actually the systems which are in place to help are often barriers themselves. This isn’t a failing of one particular institution, or just a localised problem; speaking to many UK-based disabled students, from undergraduate to PhD, the issues are widespread, varying, and often systemic.
As a disabled person you often find yourself treading the narrow line of being “disabled enough” (to access help, support, and benefits) but not “too disabled” (where the systems can’t cope and you are seen as too much of a problem). In my opinion, disabled student allowance (DSA) is a prime example of this. Disabled students have to fill out forms and provide (sometimes costly) medical evidence to be able to access the equipment and support this fund allows for, but if their impairments mean that they need something a little unusual or more complex, DSA processes can’t cope. When this happens students are left unsupported, and many drop out of university as a consequence. Sometimes, as in my case, other organisations become involved, bringing further stress and labour on the part of the student, and the added complication of another organisation’s rules and regulations, which are often not compatible with those of the first.
This was the case for me when trying to get access to suitable personal assistance (PA) support for both my time on campus and while away at conferences, either for the day or overnight. Within the DSA system there is provision for “non-medical” personal assistants, however due to the combination of DSA rules and the university’s lone working polices, this provision didn’t meet my needs as I would need the PA to travel in my car and to provide some basic personal care. This led me to approach the council for access to Direct Payments – I would become the employer and be able to hire someone to do all of that, but due to budget cuts I was not offered the hours I needed. This has left me without the support I need, which results in extra strain on my body, sometimes leaving me unable to attend university for days or even weeks at a time. On top of this, the time I had to invest in setting up the Direct Payments (with little guidance from the council), employ the PAs, learn some basic employment law, etc., was immense and took away from the first year of my PhD.
Policy issues aside, disabled people often face the conundrum of just how much they should disclose about their impairment and how this affects them. This problem is most commonly associated with students who have invisible impairments, and to an extent a wheelchair user like myself can’t hide their status to avoid stigma or fit in more easily. However, there are often unseen and less well-known consequences of a condition that are less often acknowledged and spoken about. For me, unless you know a lot about my condition – Osteogenesis Imperfecta Type III – you would be unaware of how stress and tiredness make fractures more likely or how easily fatigue can overcome me. You may understand that I fracture easily, but it’s unlikely you know just how often or how often I carry on regardless because I have the same timescales and expectations of suitable output to abide by as everyone else. These issues and others like them are ones which I consider as “secondary” to my main impairment and to an extent I have the choice of when, to whom, and if I disclose them at all. I generally don’t because people rarely know how to respond and the system isn’t geared up to accommodate people who experience such fluctuations in health. I also don’t want to risk falling into the “too disabled” category which could potentially damage my future career prospects.
Don’t get me wrong, I love doing my PhD. I am extremely grateful for the help that I do get and for the opportunities afforded to me. But with problems such as those described here, added pressures on my time in the form of hospital appointments, benefit assessments, and technological failures which render me stuck at home, I can’t get away from the feeling that due to my impairment status I experience as much additional labour as having a second part-time job.
This blog post is based on the author’s article, “The additional labour of a disabled PhD student”, published in the Journal of Disability & Society (DOI: 10.1080/09687599.2017.1375698).
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About the author
Stephanie Hannam-Swain is nearly at the end of the second year of her PhD (part-time). She is researching disabled people’s conceptualisations and experiences of self-harm at Sheffield Hallam University, within the Department of Education and Inclusion, where she also works as an associate lecturer. Her background is in psychology but she has now moved into disability studies, which has been a major shift in thinking for her. She is interested in all aspects of disabled people’s experiences of life, especially experiences of disablism and psycho-emotional disablism. Her ORCID iD is 0000-0003-2988-261X.