Melanie Hibbert Bown

Personal, Public, Institutional: My Journey in Disability Studies

My journey into the area of disability studies began when I became a mother in the 1990s. Two of my daughters, now young adults, were labelled as having a Learning Disability.

Looking back on their childhood, it’s painfully clear that throughout their educational years, my family were constantly fighting for my daughters to have access to mainstream resources. Everything seemed to be a perpetual struggle. Accessing much-needed services from professionals and Local Authorities became a series of battles, the number and ferocity of which didn’t seem to ever diminish as my daughters grew older. The ceaseless struggle took a toll on me, and in 2005, I acquired a mental health impairment myself. Though my family’s experiences were incredibly challenging, we were certainly not alone. In my line of work as a childcare Special Educational Needs (SEN) practitioner. I came across many families who had disabled children that were also in the same position as us. What was striking to me was that some families simply accepted what they were being told by professionals. Our family, however, did not. My gut feeling was telling me something different: we had to advocate strongly, tirelessly for my daughters to gain access to mainstream services.

As the years went by, I became intrigued more generally about the politics of disability beyond my family’s experiences and what I’d witnessed directly from working with other families. I wanted to find out more, and so in 2009, I enrolled on a BA honours degree in Disability Studies at my local university. It was then that I was diagnosed with dyslexia. The diagnosis did not discourage me in my commitment to follow my aspirations. I was still determined: after all, I was the first person in my family to go into Higher Education. It was on this course that I began to understand the theories which underpin the societal understanding of disability, and which shape socio-cultural and political responses to disability and disabled people.

After my BA, I was very keen to continue to develop my knowledge further, so I enrolled in an MSc in Disabilities Studies. On the course, I extended my knowledge in disability studies and disability theory. However, something was missing. While I could understand my own experiences as a disabled woman of colour, the awareness of the intersection of race and disability around me in the institution was, to me, very limited. This gap in awareness affected me directly: it did me no favours at all. I say this because I remember holding a conversation with my course coordinator about the lack of reasonable accommodations in Higher Education made for disabled students, primarily students, like me, who are known to have dyslexia. However, I quickly realised that the coordinator’s responses weren’t just ableist (made with a disabling attitude), which was bad enough. Her responses were also rooted in racism. Subject to her words, I was experiencing ableist and racial microaggressions. My experience of discrimination had become intersectional, founded on racism and ableism together.

I still recall my course coordinator saying that “I was a problem”. Apparently, I was “the only student of colour with disabilities to ever complain”. Her response was unexpected, but mainly it was the way she said it that’s impossible to forget. I was taken aback by her response and what she had forced me to experience, especially as she proclaimed herself to be a “disability activist”. As a result, not only did my anxiety levels increase dramatically, but the classroom setting became really uncomfortable. At times, I could not even attend lectures because of my increased anxiety levels. A week or so after our initial destructive conversation, I met with the coordinator again. She proposed that I leave the course as I “was not good enough”, and anyway, I “had way more support than non-disabled students on [her] course”. What gets me is that my non-disabled peers quickly noticed, and they appeared to adore my course leader’s attitude towards me in the classroom. Rather than coming to my defence, the other students didn’t seem to need much encouragement to exclude me.  On reflection, I can only hope that the corrections I gave on their disabling language or misunderstanding of what “disabled people need” – and I say this sarcastically –  will help them in whatever field they end up working in. Hopefully not disability services, or academic disability studies.

As a result of these events, I started to use my Twitter account to vent about my lived experiences, and the devastating emotional impact they had on me as a disabled student of colour in Higher Education (HE). Frankly, I was somewhat taken aback by the keen interest shown to what I had to say. In particular, other disabled students of colour started to share that they had gone through the same or similar lived experiences while studying in HE. One of my biggest worries became the impact of racist-ableist treatment on other disabled women of colour, who may be internalising the pain of their experiences while studying to become academics in the HE sector. Certainly, up until this period, my own university was more than happy to make me feel as if I was the problem, and not their institution or their staff attitudes. This inspired me to set up the Intersectionality Network.

Written by Melanie Hibbert