Sarah Long is a current PhD student in the Department of Social & Policy Sciences. In her research, she focuses on the complex relations between spirituality, people with impairments, and theological settings, quality of life and bioethics. Sarah herself is one of the oldest survivors of the rare Morquio syndrome caused by missing enzymes. She has recently returned from a conference in the Vatican, where she met Pope Francis.
The title of the conference was Catechesis and Persons with Disabilities: A Necessary Engagement in the Daily Pastoral Life of the Church, and was hosted by The Pontifical Council for the Promotion of the New Evangelisation at the Pontifical Urban University. The talks were primarily theological reflections on disability, inclusion and the value supporting the disabled community within parishes and theological schools.
Speaking about the conference, Sarah said: "Having been an opening speaker at the first conference of its kind last year, this time I was asked to attend as a representative of disabled academics with this unique perspective on the theological field. A request was also made that I wrote directly to Pope Francis with my account of my faith journey, including the current challenges and frustration I face both as a researcher within this field and a person of faith.
"Attendees of the conference were then invited for an audience with Pope Francis within his private rooms. He took the time to meet every single member. In each greeting he showed enthusiasm, gave eye contact, and really connected with people! When we met, I gave him the copy of my writing, and he prayed over me, giving me a blessing."
Sarah's academic and life journey
Sarah first attended the University of Bath in 1990, when she studied her undergraduate degree in Sociology and Social Work. She recalls the experience: "In those days, it was perfectly acceptable to reject disabled people on the grounds of their impairment before you considered their intellect. On the contrary, I considered the selection process of the University of Bath the fairest and based on my academic merit.
"In fact, the day we came to visit, we got so lost trying to find the accessible routes around campus. On this visit I made a long-term friend, and it was with much joy to find that she also accepted a place."
After graduation, Sarah pursued a career in the disability rights field and helped devise the national disability rights legislation. She also completed an MRes in Sociology, which provided her with the foundation for a PhD and finding her way back to Bath. "What is funny is that I probably couldn't remember all the subjects I studied in my undergrad, but somehow the accessible routes remained!"
Sarah's health deteriorated shortly after she had started her PhD research, as the trial drug she had been using for her enzyme replacement therapy treatment was no longer supported by the government.
"At the same time as the trial was being stopped, the independent living fund also got closed. With the withdrawal of the drug, my health worsened dramatically, and I was forced to make those end of life decisions. It has been a long and difficult time for me. Fortunately, the drug company stepped in and offered me the drug on a compassionate basis, which saved my life."
Despite all the odds, Sarah remains determined and focuses on the future: “After rehabilitation treatment, I want to complete my PhD research. I am currently recruiting support workers, and looking forward to returning to the university soon."