Amy Hassett, Erasmus University, Rotterdam, Netherlands
Vivian Rath, Trinity College Dublin, Ireland
Two students with disabilities who are blazing a trail in the fields of STEM, education, equality and diversity are Amy Hassett and Vivian Rath. Amy a founder of Disabled Women Ireland (disabledwomenireland.org) and Vivian a former director of the board of the Irish Association for Higher Education Access and Disability (ahead.ie), have been campaigning to ensure the rights and needs of those with disabilities remains top of the agenda in Ireland. Both with a background in STEM, these disability rights campaigners shared their stories with us and detailed several action points necessary to bring about meaningful change. Our discussion with them reflected the differences in experiences of people with disabilities, and emphasised the importance of not assuming everyone with a disability will have similar experiences or the same needs.
Amy Hassett is a physiologist undertaking a neuroscience masters at Erasmus University, Rotterdam where she is investigating the use of machine learning in characterising the behaviour of autism mouse models. As a person with a disability, namely osteogenesis imperfecta or brittle bone disease, she chose to engage in activism and served as the Student’s Union Disability Rights Campaign Coordinator while studying for her BSc at University College Dublin. Her condition resulted in below average height, skeletal malformation and bones much more susceptible to fracture, which often necessitate the use of mobility aides such as an electric wheelchair.
Amy spoke to us about her experience in various labs, in particular about the barriers to access she’s faced that many of us never have to consider. “In the past I’ve done cell culturing, western blots and all that stuff. In those [wet] labs it can be a little bit harder to get around… getting into a darkroom I had to get out of my wheelchair, you just had to… and for cell culture, you obviously cannot bring an electric wheelchair into a cell culture room.” After humorously recounting the creative solutions she and her undergrad supervisor came up with to modify and make safe her “really frickin’ massive” lab coat, Amy impressed upon us the importance of a supervisor’s outlook on a disabled person’s experience. “It all comes down to the attitude of the supervisor I think. There are some supervisors who just say ‘look we’ll work it out’ and there are others that are just terrified! We had a lab technician, who was just petrified of someone with a physical disability and just thought anything that can go wrong, will go wrong, and ‘well maybe she shouldn’t be here’. When that’s somebody’s first response, it’s really poor!”
Following a BSc in Pharmacology, Vivian Rath’s experiences motivated him to shift his research interests from STEM to the inadequately addressed issues faced by students like himself. Continuing at University College Dublin, he went on to complete an MSc in Business Management where he researched the factors impacting the employment of graduates with disabilities. Now a PhD student at Trinity College Dublin he investigates the social involvement and sense of belonging experiences of students with disabilities in higher education. Vivian is also an appointee to the National Disability Stakeholders Group and Irish Human Rights and Equality Commission Disability Advisory Committee – the first ever statutory advisory committee in Ireland to support monitoring of the implementation of the United Nations Convention on the Rights of People with Disabilities (IHREC, 2019; UN, 2006).
Vivian has significant physical disability due to a spinal cord tumour he had removed when he was three years old. He typically uses a mobility scooter or two walking sticks. However, chronic ill-health, due to severe asthma continues to be one of his most significant medical issues which can affect all aspects of his life. Vivian recalls the challenges and help he received during his undergrad at University College Dublin. “I really enjoyed my time studying pharmacology and it has equipped me with a range of transferable skills that I have brought with me into my many roles including my PhD. I think what was most important was the supports that I received from the college disability support service and my department, this enabled me to succeed and enjoy the full college experience. Science is a demanding course in comparison to other disciplines and I spent a lot of time in the laboratory. And so, those academic supports that I received, for instance having a notetaker from time-to-time, or receiving notes in advance of lectures was really important! I faced many challenges in the lab, and I found the physical aspect exhausting. However the staff in the department were extremely helpful; the difference between succeeding or failing for any student can often be the people you meet along the way, and that was certainly my experience.”
Vivian’s research aims to identify the barriers and enablers to the the social involvement experiences of students with disabilities. He notes, “that due to inclusive policies and greater supports there has been an increase in the number of students with disabilities attending higher education over the last decade but despite this there has been little focus on their experiences of their wider college student experience. Students still face a range of barriers including, inaccessible environments, lack of suitable supports, and outdated perceptions.” Although thoroughly enjoying his PhD, Vivian highlights that the numbers of students with disabilities progressing onto postgraduate level is very small. He believes that this is due to a number of factors including the lack of funding streams, the culture and the highly competitive environment. “PhD researchers are expected to give so much of their time to academic activities outside their PhD. You need to organise conferences, seminars, give tutorials and lectures, attend international conferences, and that’s all on top of your research… and of course publishing!” As someone with chronic asthma who often spends considerable time in hospital, it can be extremely challenging to balance these expectations. Vivian is often forced to focus on his PhD work only, and has felt under huge strain to meet the demand to build his academic CV whilst completing his research. Again he highlights the importance of his relationship with his supervisor and the support of his department the School of Education and the disability support services at Trinity College Dublin.
On a similar note, Amy highlighted that one of the most difficult things for her has always been how much to disclose on her CV directly or indirectly “… a lot of it was to do with disability. In my opinion that’s a risk! All my volunteering and work experience, all my skills were related to campaigns I had done in relation to disability rights. You’re kind of putting up a big flag saying ‘hey, I’m disabled’! It’s nerve-wracking to have to make that decision, but I did it and it worked in my favour, for the most part.” Also when it came to the interviews for choosing the lab project in her Masters, she found the experience induced even more anxiety about future employment prospects. “Again that’s pretty nerve-wracking. People have very expensive equipment, the labs can sometimes be small or not so small, and you’re worried that they might say ‘this is too much effort, this is too much hassle’. The one thing that I noticed was that every supervisor asked me ‘how are your hands?’ and I didn’t even think of this, but [in hindsight] what they were really asking me about was my fine-motor control for doing things in the lab. I don’t mind being asked that, but I think what it showed was that it was definitely in the back of their minds. You always take a gamble… there’s always an extra hill you have to climb, and sometimes it doesn’t pay off in your favour and sometimes it does.”
Vivian and Amy noted people with disabilities are constantly having to be innovative and adapt to situations quickly. They believe that these problem-solving abilities make people with disabilities perfect candidates for careers in science. And while persons with disabilities are clearly drawn to science and mathematics undergraduate courses (12.3% of students with disabilities vs 9.5% of total student population in Ireland [AHEAD Ireland, 2018]), there is a worryingly low number of students with disabilities continuing on to postgraduate study (students with disabilities representing 7% and 2.8% of the total undergraduate and postgraduate students in Ireland, respectively (AHEAD Ireland, 2018), and disabled STEM students being 57% less likely to take up postgraduate STEM study than non-disabled students in the UK [CaSE, 2014]).
Five ways every organisation can better support people with disabilities
Rath and Hassett point out that everyone can be an ally and identified some key changes that could make a real difference in the laboratory and in college.
Nothing about us, without us: People with disabilities are not all the same; they have different needs, and different preferences. The easiest solution is to ask persons with a disability what they need (UN, 2006).
Complete an access audit: Undertake a review of the supports your organisation or institution currently offer.
Make disability awareness training mandatory: This involves understanding and appreciating the needs of people with disabilities including your legal obligations.
Create a postgraduate-specific funding support programmes: People with disabilities encounter many additional challenges in the college environment while undertaking a postgraduate course. In particular, the additional costs associated with having a disability. For instance, finding suitable accessible accommodation, medical bills, support assistants, extra travel costs associated with attending conferences, etc. There needs to be more financial supports for people with disabilities who want to take on a PhD, similar to dedicated schemes for increasing representation from other under-represented groups.
Implement universal design (UD): Universal design is a set of design principles whereby the environment should be designed in a way that meets the needs of all users (both in terms of structural aspects, but also ways of teaching) (CEUD, 2014).
In addition to implementing these five principles, Vivian highlighted that from his experience it is really important that students with disabilities feel like they belong and feel part of the wider college community. In order to achieve this goal, access must be everyone’s business.
AHEAD Ireland (2018). Numbers of students with disabilities studying in higher education in Ireland 2017/2018. [Online] AHEAD Educational Press, Dublin. ISBN 978-1-9993202-3-2. Available at: ahead.ie/data-statistics?id=83&qstring= [Accessed 4 June 2019]
CaSE (2014). Improving diversity in STEM. [Online] Campaign for Science and Engineering. Available at: sciencecampaign.org.uk/resource/ImprovingDiversityinSTEM2014.html [Accessed 4 June 2019]
CEUD (2014). What is universal design? [Online] Centre for Excellence in Universal Design. Available at: universaldesign.ie/What-is-Universal-Design/ [Accessed 4 June 2019]
IHREC (2019). Irish Human Rights and Equality Commission – Disability Advisory Committee. [Online] Available at: ihrec.ie/crpd/ [Accessed 4 June 2019]
UN (2006). United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). [Online] Available at: un.org/development/desa/disabilities/convention-on- the-rights-of-persons-with-disabilities.html [Accessed 4 June 2019]