Based on an interview with Ian Shipsey
I grew up in a working class district on a notorious council estate (housing project) in London's East End. I was hearing at that time. My high school had 180 students per year. Only two of us went to university. My parents had left school at 16. As far as I am aware none of my fellow students had parents who had attended university either. I went to the local university; Queen Mary, in London to study physics. I then took a PhD in particle physics at Edinburgh where Peter Higgs was one of my teachers. Shortly after arriving at CERN, the main particle physics lab in Europe, I fell in love with a wonderful Italian physics student who was heading to the US for a PhD so we began a transatlantic relationship until I had completed my PhD then I went to America to join Daniela. Daniela and I married and have one child. Shortly after getting married, while Daniela was still a student and I was a postdoc and both of us were working on the CLEO scientific collaboration at the Cornell Electron Storage Ring (CESR) a particle accelerator at Cornell University, I contracted acute myelogenous leukemia and was treated by a remarkable team of doctors and nurses at the Cornell University Medical School in NYC for more than one year. An industrial strength dose of chemotherapy beat the cancer but left me without an immune system and a medically necessary dose of broad spectrum antibiotics protected me until my own immune system had returned. A side effect off the antibiotics was irreparable damage to the hair cells in both cochleae resulting in severe sensorineural hearing loss.
Although still a postdoc I had already accepted a tenure track assistant professorship before becoming ill. I was very fortunate, had the timing been different and I had become ill before job season had commenced I would not have had that position and would have been regarded as unemployable by many. I accepted the job about a week before any symptoms appeared. The postdoc was at Syracuse University and the faculty position at Purdue University. After recovering enough to take up my new position about a year later, I then moved to Purdue which is about 120 miles (180 km) south of Chicago in Indiana and Daniela came too as a postdoc.
The unconscious assumption of able-bodied people is that deaf people are less able to teach or conduct research. Being underestimated is OK up to a point. In my field in the US it is typical to take one or two postdocs, each of 3 to 4 years duration, before becoming an assistant professor. I had only been a postdoc for 2.5 years when I was offered the job at Purdue (and jobs at other schools) so I was considered very promising. Purdue was a big physics department with about 60 faculty and about 57 of them had never met me as hearing person. They thought life had been dealt a very tough hand, they were kind and empathetic but they found it hard to consider me any longer as promising.
It was assumed I could not teach and nobody was quite sure what to do so I was left to my own devices. I did some research partly funded by the start-up given to me by Purdue and then wrote three proposals for young scientists, two of which were successful and resulted in very significant funding. One was the National Science Foundation National Young Investigator Award which that year only two people in the US were given in my area. Having won the awards, it is customary to be considered for early promotion to tenure to pre-empt other universities from poaching but in my case I had no teaching record so I could not be promoted. To fix that I was given an opportunity to teach which I had no experience of doing. The teaching experience was wonderful. Being deaf served to make me a better teacher because I strived harder to be especially clear so that the number of questions students had tended to build and extend the material I was explaining rather than asking for further explanation of what I had already "explained". At the end of the semester I received the physics professor of the year award. The award is given by the physics students at Purdue including those I had taught. It means to this day a great deal to have received it. The award helped to establish my ability as a teacher and I was promoted to tenure. Meanwhile Daniela became an Assistant Professor and our daughter Francesca was born.
When I moved to Purdue I continued to work at Cornell for most of my research. A small network of friends on CLEO, all able-bodied, took it in turns to help me by taking notes at meeting. They said that in front of their eyes they saw a transformation in my ability to contribute, often decisively, to discussions. Eventually this led to I and several others developing some new ideas, and to me being elected the scientific leader of the collaboration and the award of very substantial funds to conduct a new program in particle physics at Cornell. It was while leader of CLEO that I explored cochlear implants and received one.
Prior to my cochlear implant, communication with students especially in large classes was difficult. To solve the problem I asked students to write questions down on paper and pass them up to the front of the class. Students in large-enrollment physics courses are often very shy about standing up and asking questions; writing the question made it anonymous and hence easier for students to ask questions. The method was subsequently tried out by some hearing faculty to good effect. I sometimes communicated with my own doctoral students through bone conduction; the student and I both leaned our heads against a wall and the student talked into the wall and I could sometimes comprehend what was being said though the vibrations combined with lip reading. In any situation where I was not a focus (such as in the audience at a conference) understanding what was happening was very difficult so I avoided conferences and did not in general network. Conversations were difficult. Hearing people feel awkward speaking to deaf people first because nobody enjoys saying something and not being understood and second very few hearing people have had any experience of talking to a completely deaf person.
There were two turning points in my ability to communicate. The first was that physicists in general are very interested in the research of other physicists. In the CLEO collaboration at Cornell, everyone knew me as a hearing person who became deaf. This meant that the deaf stereotype was not applied to me so strongly by that group and there were several faculty at Cornell who proactively began to help me with communication, offering to take notes for me. In addition, I began to request stenographers at Purdue and Cornell.
At conferences today, I simply sit in the front row and if I cannot understand I ask people to speak louder and slower and to repeat what they have said but I would not have had the confidence to do that in the early days.
I did not find it easy to gain access to stenographers as they are few and expensive. In principle the deaf students and I had the right to a stenographer, but there were more of us than there were stenographers. I used stenographers occasionally until 2003 when I had the cochlear implant. It’s quite likely that there are many parts of the world where students who are unable to hear do not have sufficient access to stenographers today.
In my field, some of my postdocs and students will typically be based at CERN. Communication remotely was very difficult before I received the implant. It was mostly text based (shared electronic logbooks) and email. Now we communicate via Skype and video conferencing. On experiments in particle physics everybody takes it in turn to run shifts operating the experiment. After I lost my hearing, but before I received a cochlea implant running shifts was hard for me, as although we have a lot of visual information when we run shifts, there are also purely audio cues such as alarms that it would not be possible for me to hear. However, colleagues happily and kindly installed visual equivalents (warnings on a computer screen when the alarm sounds). This enabled me to feel comfortable taking the shifts as with the accommodations that had been made I could now do the job as well as when I could hear and as well as other physicists. Much of the work I do is in my office, but when in the laboratory the work is visual and I have many wonderful students and postdocs and engineers and technicians working with me and helping me, almost all are able-bodied.
I find it difficult to understand amplified voices. This is because amplification distorts voice as well as making it louder. For hearing people, the noticeable effect is the volume increase whereas the distortion is usually unnoticeable or at least not distracting. For many with a cochlear implant the distortion dominates any gain in volume. This is because cochlear implantees have less sense elements than those with natural hearing so our auditory pattern recognition is inferior. If the auditorium is small I request people do not use a microphone to ask questions but if the auditorium is large I ask the audience to write down their questions.
Before I had my hearing restored I was elected three times to be the leader of the CLEO Collaboration, a group of 21 universities and about 180 scientists at Cornell. After I received a cochlear implant, I became Head of the LHC Physics Center at FNAL and was elected Chair of the Collaboration Board of CMS (one of the two experiments at CERN that discovered the Higgs). I was hired at Oxford to become Head of the sub-department of Particle Physics in 2013 many years after I became deaf and had a cochlear implant.
I need no special resources now except the cochlear implant. I do ask people to look at me when they are speaking to me, and when people mutter I ask them to speak clearly. I do not participate in the sign language community because nobody I knew professionally or outside work could sign. I have met with signers though to talk about my experiences with the aid of SL interpreters. Since receiving the implant, I have found that I am much more likely to be placed on committees and more frequently asked to give talks and more generally given opportunities as it has become easier to communicate. Throughout my career in the US and UK my colleagues have always been very supportive.
It is a real phenomenon that many scientists feel conflicted about acting publicly as a scientist with a disability because there is a risk they might become less known for their science and more known for their activism. The same thing happens when an academic engages significantly in outreach to the public or to school kids. One starts to become known for outreach and academic colleagues will question if you are a devoted academic. My strategy to deal with this is as follows: if I am invited to an event to give a talk because I am deaf, I concentrate mostly on my work, what I have accomplished and how rather than concentrating on the disability. The result is that people see an example of a practicing scientist passionate about their work who happens to be deaf. With this strategy I am not trying to trivialize the disability, I am trying to show that its effects can be overcome.
One of my doctoral students had a very severe speech impediment. He was an outstanding student with outstanding grades, yet he had difficulty to find a professor to supervise his thesis. He was very bright and we did great work together. Looking back now it seems to me a person with a disability is sometimes more sensitive to the difficulties faced by others with disabilities, and in some cases this makes them better prepared and more confident they can effectively help and supervise the student. That is certainly the reason I took the student. I did not see the disability as anything other than surmountable.
I generally disclose my deafness. I am proud of it. O Course, I would prefer to have natural hearing but I am inspired by the incredible technology of a cochlear implants that, when married to a human brain, can enable an implantee to understand much of the auditory world. To achieve greater acceptance of disabled people in academia, we need more role models. We need access to the right types of support so that people with a disability are not disadvantaged by that disability to the extent possible.
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