Overcoming Hurdles During My PhD

Written by Alex 

Deciding to do a PhD is an enormous life decision. It's something that will take over your life for at least three or four years after you start. Overall, it's been an amazing experience for me, and now that I've come out on the other side, with my doctorate in hand, I've had some time to reflect about navigating the experience as a student with a disability. My PhD is in Arts and Humanities, so this post reflects my experiences in that faculty.

I have an invisible, physical disability. It's something that varies from day to day. My condition is genetic, which means that it will never go away, and it's something that I've had to learn to cope with. If I'm honest, I didn't really learn to manage my condition until the end of my masters degree. I realized that I couldn't keep working myself into the ground, and that it was much better to take a bit of time off and refresh, so that I could keep going.

In terms of choosing a place to do my doctorate, I was lucky enough to get a funding offer at the same place where I had completed my MA. I hadn't really thought about disability support when I was applying, as I knew it was such a game of chance anyway that I'd be lucky if I got anything. Once I got my position though, all the documents were in place so that I could continue receiving the same support I'd had before.

The system slightly changed in terms of finances - it was my funding body rather than the Disabled Students Allowance that supported me now. But, I found this process quite straightforward as I already had all the required documentation. To be honest, I don't really remember much about this application process, just that the staff at Disability Services were really helpful in getting me sorted.

For me, it was important that both of my supervisors knew about my disability and understood the impact it might have. I use a voice to text software called Dragon Naturally Speaking, which often makes interesting word choices, such as ‘surgical’ instead of 'liturgical’ and taking issue with my use of the past tense. Consequently, my supervisors were a little more lenient with mistakes in my work, in instances where it was clear that it was Dragon making the mistake and not me. Also, one of my supervisors had an office three flights of stairs up. That's not something I'm able to do, so we always met somewhere else. I think being open with my supervisors enabled them to better support me in my studies.

In terms of other students, my disability was not really something that came up much. I sometimes talked about my 'joint problems', but usually only when I was explaining why I couldn't carry things or needed to sit down. I slowly became much better at acknowledging when I needed to sit down during the drinks after evening seminars. Initially, I would just stand like everyone else, but now I’ll seek a seat if I’m struggling.

Another thing I had to learn was to take time off. Doing a PhD is a bit like a job, although it seems to be not so much 9-5, but rather 24/7. You'll see people tweeting about working at all hours, and there seems to be a really unhealthy culture of boasting about how much you're working. This really isn't helpful. One of the most important things for me to do to manage my condition is pacing - pacing myself not only through the day, but also throughout the week, to make sure that I don't burn out.

While I was doing my thesis, I didn't work for two whole days per week. Initially this was just two days throughout the week, one weekday and one day on the weekend, and then it changed to taking the entire weekend off. On these days, I didn't respond to emails or do any work. I might have done the odd bit of reading or teaching prep, but nothing too strenuous. If I hadn’t taken this time out, then it would have had a negative impact down the line. For me, it was much better to have this time off and getting enough rest than having to take at least a week off every couple of months to deal with the burn out. This is a difficult thing to do, particularly when you feel that the people around you are working harder than you, but the most important thing is taking care of yourself.

One thing I wish is that there was more of a community of disabled students. This really wasn't the case for me. I know there are issues around disclosure and so perhaps some people are scared to admit they're having problems. I did find a community on Twitter though - I've found lots of other people in academia, who are disabled, or who have my condition - #spoonie and #eds for example.

A final piece of advice would be to not be scared to ask for help, and to make sure you ask what is available for you. For example, my university has a computer suite with adaptive technology, which I only found out about at the end of the third year of my PhD, nearly four years after I joined the university. I now employ a policy of 'don't ask, don't get' - the worst that can happen is that someone says no. It can be tough sometimes, but for me this ultimately meant that I received the support I needed to complete my doctorate. 

About the Author

Alex just completed her PhD in an Arts and Humanities Faculty. She has an invisible disability called hypermobile Ehlers Danlos Syndrome. hEDS is a collagen disorder, which means that Alex’s ligaments are too stretchy. Among other things, this causes chronic pain. She also blogs about phd-ing while being disabled and wearing a 'Please offer me a seat' badge on the London Underground at  https://pppphd.wordpress.com/

Developing Disability Cultural Competence

Written by Rosemarie Garland-Thomson 

Here’s my advice for people with disabilities so they can come out and flourish in the professional environment. Our ultimate goal is to develop disability cultural proficiency. This begins with disability cultural competence, which is learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become non-disabled. Competence moves toward proficiency as one carries out living with a disability over time and working toward achieving a high quality of life while living with a disability.

Developing disability cultural competence begins with identifying openly as a person with disabilities. Cultivate dignity and authority as a person with disabilities. Enter into organizations and communities that offer support, resources, groups, and gathering opportunities for people with disabilities. Find like-minded colleagues and friends who have disabilities.

As a person who identifies as disabled, know your rights, protections, opportunities, information, culture, history, and communities that can support your flourishing as a disabled person. Learn about requesting accommodations in your workplace, accessing resources and information, and getting physical access. Go to the disability resource center or office of disability services and register as a disabled person so you can request accommodations and know what services and technologies are available to you in the workplace. It should be that office, not your supervisor with whom you discuss your access and accommodation needs. You should not disclose to your supervisors your medical diagnosis, but rather focus on the accommodations you require to carry out workplace expectations. And especially, your supervisors should not be deciding whether or not to grant you accommodations for your disabilities.

Learn to use public resources and supportive structures for people with disabilities. Consider accessible reduced entrance fees for people with disabilities, transportation options, and research how to get proper documentation and procedures for other benefits for disabled people in public space venues.

Most important is to know and use the rights, benefits, and protections provided in the Americans with Disabilities Act (ADA) or your national and local codes and policies for assuring disability equity and nondiscrimination. Go to the ADA website. Read the United Nations Convention on the Rights of People with Disabilities (UNCRPD) if your country has adopted the treaty. Find out about its implementation in your employment and public environment.

In short: know your communities; know your rights; know your access needs; know your accessible technology.

 About the Author

Rosemarie Garland-Thomson is Professor of English and bioethics at Emory University, where her fields of study are disability studies, American literature and culture, bioethics, and feminist theory. Her work develops the field of critical disability studies in the health humanities, broadly understood, to bring forward disability access, inclusion, and identity to communities inside and outside of the academy. She is the author of Staring: How We Look and several other books. Her current book project is Habitable Worlds: Toward a Disability Bioethics.