The additional labour of a disabled PhD student

For people with little or no experience of disability it may be easy to believe that disabled people get all the support they may need at University. There are systems in place which means their needs will be met and if they do face problems it’s down to the individual to be more flexible or just to accept the status quo as being a ‘natural consequence’ of their impairment. As a disabled student, having studied on and off at University level for 10 years including my current undertaking of a PhD, I can confirm that this is not the case, and 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; undergraduate to PhD, the issues are widespread and varying and are 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 fund which brings with it equipment and support, but if their impairments mean that they need something which is a little unusual or more complex, it can’t cope. When this happens students are left unsupported, and many drop out of University as a consequence, sometimes like in my case, other organisations become involved which brings with it more stress, labour on my part, and the added complication of another organisations rules and regulations which are often not compatible with the first.

This was the case for me when trying to get access to suitable personal assistance (PA) support for both whilst I was on campus and away for the day or overnight at conferences. Within the DSA system there is provision for ‘non-medical’ personal assistants, however due to the combination of DSA rules and the universities 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 I would 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 which can leave me unable to attend University for days or weeks at a time if I fracture. On top of this, the time I had to invest in getting the Direct Payments set up, with little guidance from the council, employ the PA’s, learn some basic employment law etc was immense and took away from the first year of PhD.

Policy issues aside, disabled people often face the conundrum of just how much do they disclose about their impairment and how it 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 myself, unless you know a lot about my condition – Osteogenesis Imperfecta Type III, you would be unaware of how stress and tiredness makes it more likely that I will fracture 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 time scales and expectations of suitable output to abide to 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 don’t 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 start to fall 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 above, 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.

There needs to be more disabled people involved in the planning and management of academic settings and development of schemes such as Disabled Student Allowance by the government – people with real life experiences and knowledge of what does and doesn’t work. Many organisations will get a token disabled person onto some panel or other, but this is often a one off occurrence and little of that they have to say is actually taken forward. I often get the feeling whether at University or in other organisations, adjustments are only made if they are convenient for non-disabled people and there is a lack of understanding of the true impact on disabled people is when adjustments are denied. Wouldn’t it be a fantastic coup for a University to be able to claim that they are at the forefront for accessibility and have student voices back this up? Surely this would bring more students and therefore more revenue – accessibility is an investment in the university’s and the students’ futures.

Full article: Hannam-Swain, S. (2017). The Additional Labour of a Disabled PhD Student. Disability and Society