RICHARD>>: Our next speaker is Caroline Benn. Caroline is a neuroscientist, essentially. She took a first in neuroscience at the University of Sussex, and then she did a Ph.D in molecular neurogenetics at Kings College London, with a particular focus upon Huntingdon's disease and that figured for a decade or so in the early part of her career. She was then a post doctoral fellow at Massachusetts General Hospital. Later she joined Pfizer in 2008, and she is their Principal scientist. She is the Group Leader in Molecular Biology with a particular focus upon regenerative medicine, looking at cells in particular, and her group maintains a watching brief over many other emerging new areas in medicine, such as epigenetics. Caroline has been profoundly deaf since a childhood illness.

CAROLINE>>: Hi. First of all, I would like to say thank you very much for this opportunity to speak here. This is a bit outside my normal remit, and I think it is a great opportunity to have, so thank you. I think I'm fairly unique in having a slide deck out of the speakers here, so I hope you will bear with me. So this is one of the downsides being a professional scientist we like our slides. We take them with us everywhere.

Just to follow on with a bit of background from that lovely introduction, thank you Richard. I do I define myself as essentially being a normal person with really, really bad hearing. This is not to belittle being deaf or anything like that. I just, I like to define myself as a normal person who has something to contribute, despite not being able to hear very well, and I think this is one of the strongest recommendations that I would make. I think the attitude that you carry with you about yourself is really key in terms of defining how you approach your life, so I'm not somebody who says woe is me, I am deaf, life is so hard. Yes, I’m deaf, yes. I cannot hear, but that doesn't mean that my life has to be particularly hard, and I think this means I have a much happier life as a result, and this is one of the strongest recommendations that I can make. You have an attitude that you carry with yourself. It makes a massive difference to how the world will see you, how the world will respond to you, and how you respond to the world in turn.

So I had meningitis when I was four months old, when I was a baby, and I was in hospital for six weeks with a temperature of 42 degrees, and I have had the last rites said over me. When the doctors said to my parents, well, you cannot win them all, prepare yourself for the worst, so I think this also has an impact on the way that this attitude has been established. Being deaf is not great, but it is way better than being dead, so I'm extremely grateful for what I have. So a bit more about my deafness, I'm completely deaf in this ear, without my cochlear implant, I can hear nothing. You could set a bomb off next to me and I would be oblivious apart from also being dead probably. In my left ear I can just about hear someone yelling so I really am seriously deaf. I have worn hearing aids most of my life. They were pretty much useless. In 2005 I received a cochlear implant while I was doing my post doc in Boston, and it has actually made a massive difference. I'm no longer 100% reliant on lipreading, which in terms of quality of life makes a difference. Lipreading is hard work. It is tiring. You have to know what is going to be said in order to be able to lipread it correctly. It is also my secret spy ability. I can lipread from pretty much any angle, and I do try very hard to be morally ethical about this and not lipread conversations I'm not supposed to. Much to my sadness, I have never learned sign language. I would love to learn, but I owe one heck of a lot to my mother. My mother patiently spent at least one hour with me every day which meant that I could read and write by the time I was three and I could lipread and talk fairly quickly after that. She did make a slight error in judgment in that she taught me in her mother tongue which was French, so when I went to school at five I had to learn English really quickly.

So I have been mainstreamed, and from the beginning my parents have been very strong advocates, and just because I couldn't hear, did not mean I could not -- did not mean that I couldn't do certain things. As far as they were concerned I was a normal kid. So I have never been told, "You are deaf, so maybe you should not do that". I went to -- I actually remember when I was four years old, watching a concert pianist on television, and I was very impressed with the way that they flipped their tailcoat and sat down and started to play and I thought yes, that could be me. I could do that. I started piano lessons, and I did get reasonably far, I got to grade 5, but it is never really going to be the optimal career choice for somebody who cannot hear the piano. Similarly, I have done ballet and tap dancing, and I do remember seeing the teacher take my mother aside and say maybe your daughter is not really suited to ballet, after about my third lesson when it was obvious that everybody else in the class would plié down, I would look around, and I would go down, everyone else would come up, so they turned to and said, "Would you like to do something else instead and I said yes please, can I do tap? And I remember seeing the look of alarm on their faces, so I think the key message from this is you may well, you probably will have a lot of fun along the way. It is not -- you should not let something like not being able to hear stop you at all -- but having said that, one thing that I did learn later on in life is that you did need to be realistic and I learned that when it came to career choices, so since I can remember understanding the concept, if I was asked the question what do you want to be when you grow up, the answer was a doctor. I wanted to be a GP, just like my dad. Occasionally I would take this a step further and say I wanted to be a neurosurgeon. My parents never disabused me of this notion.

I went merrily on through life and went to a mainstream school and everything I did was towards being a doctor. Then when it came to actually applying to Medical School, I was rejected from every single one, and I couldn't figure out for the life of me why. Until one very kind college tutor took me aside and explained to me, and he said look, I practice medicine, you need to understand that you do need to be able to hear to practice medicine. I have been in situations where if I had not understood what a patient has said to me I would not have made the appropriate choice. And some of those patients don’t speak well and if you cannot hear what they are saying, they might die. As a result of the wrong treatment choices you might make, and that really, was a revelation for me. It made me realise that no matter how enthusiastic I was, how motivated I was, how much I was willing to give it a try, there maybe some things that weren’t really an option for me. So I had to make a big shift in my career decision, and I decided to turn towards my main love which was biology, and there was a recommendation that I would like to anyone in a similar situation, if you are trying to figure out what a good career would be, give it a go, it doesn't matter if you trained or not, just go along and say "Can I please have a try at this, can I see whether this would really suit me", and really actively evaluate it and see whether it is suitable for you so go and see for yourself. None of these guys use a telephone, none of these guys use a stethoscope. Fantastic. I get to play with pipettes, which is even more fantastic, so career pretty much set from there.

One thing that I would like to share with everyone, I am now at a point in my life where I have absolutely no shyness whatsoever and I will quite happily talk, but this wasn't always the case, so when I went to my first secondary school at the age of eleven, I was bullied pretty badly and being deaf was a large part of it, so I had my hearing aids flushed down the toilet, I had a telephone thrown at me and I was told that you may not be able to hear this but you will sure as hell feel it, which left me with a bit of a chip on my shoulder and it had a few consequences. There were some negative consequences, one of them was that I actively denied being deaf, I rejected it and I would not tell people I was deaf. You could not pay me to tell anyone I was deaf. I still do this now. But not because I have got a chip on my shoulder, but because sometimes I'm in a situation where it is not really helpful. If I tell somebody I'm deaf, the attitude changes, their behaviour changes. The way they talk to me changes and sometimes that's just not helpful.

Another aspect of this was that a lot of people thought I was rude, so I wouldn't tell them I was deaf and for example when I went to university, some of the friends that I had made maybe the day before would see me and they would call me and I would just carry on walking. What I have in here is where I came a cropper with this. This was my first week on campus, I had made some friends the day before, and I was walking along the library square when there was an announcement that it was snog for your rights day. My friends called me, they were saying hello, and they were trying to catch my attention about this, and I didn't hear them. I didn't hear anything about ‘snog for your rights day’, so when I was walking along the library square, and what this day was, if you were supportive of lesbian, gay, transsexual issues, you were opening yourself up to be snogged in front of the library square and a girl did come up to me and tried to get to know me very well, much to the consternation of some of my friends, not that that was a negative consequence, she was very nice, but there are consequences of not telling people the situation you are in.

However, the positive consequence was, it did bring forth my attitude of “So what if I can’t hear – I am just as good as anybody else”. And as a result of that I chose, actively, to go to Boston to do a post-doc, where I didn’t know anybody – it was a different country, where actually they do speak a different language, even though it’s broadly similar to English – just to prove to myself that I could do it; and – one of the best experiences of my life.

So, a couple of other points that I’d like to make. So if you’re thinking more around university and then the transition to a career, the university, in some ways, is like school: it’s a relatively stable environment, with a fair amount of support. But despite that, lessons and lectures can be hard. So one thing that I would often do was ask people if I could copy them, copy the notes that they would make: because I have a number of talents, but being able to lip-read and write at the same time is not one of them. And this was back in the day before laptops, so touch-typing is something that I would recommend going forward. That’s something that’s accessible now. But it was difficult for me, when I still had that chip on my shoulder about “I’m deaf, I need to copy”, but it’s something that you do need to do.

The other thing that the chip on my shoulder impacted upon – there were resources available to me, but I did not make use of them. I could have had a note-taker, but I didn’t have it. Instead, I chose to ask a few trusted people if I could copy off them, and then go to the library and study: which meant I usually did about three extra hours per day. But it also meant that that made me a better scientist, because I would go to the actual paper, and read the paper, and try and understand it. And it’s made a positive impact on my career.
However, at university, and again later on at work, things do get more challenging as you progress through that. So you do need to be very clear about what you need. Be very clear about seeking those resources – they are there, so make the most of them. You may need to try a few different things: the first thing you try is probably not going to work. I’ve had many experiments, most of which have been a failure; but I think it’s important to try.
And the other thing that I think, that I did kind of hesitate about putting on this: do ask for help. People are really, really willing to help, they often feel good about helping: but the flip side is, it’s possible to abuse the disabled status that you’ve got. And I hesitated about putting that, because one thing that I do try and do is to be ethical, but I have been known in the past to abuse it. So in school, I was known for saying to the teachers: “Homework? Oh no, I didn’t hear anything about any homework!” They wised up to me pretty quickly, then I got a little book with my homework written in it: but the temptation to abuse it is there, I will admit that.

OK, so, finally: professional life. So, professional life in a big pharma company is very different from academic life, and in turn very different from university or college. So I’m actually really fortunate that Pfizer is a big pharma company with a lot of resources and a fantastic attitude. Though one key difference about what I do now is that I have to participate in telecoms, most of which are international. So, almost on a daily basis, I’m speaking with colleagues in the United States, and I’m speaking with people in Japan. So I use captioning support, which is similar to what we’ve got set up here; and I use a Pfizer endorsed company that’s based in San Diego. So Pfizer pays for all this, which is awesome. The U.S. – um, the U.K. – government is supposed to pay for all this, but actually getting them to pay for it has turned out to be rather challenging. So far, we have not succeeded – if anyone can think of a way, please do let me know!

There are other things that I’ve found challenging outside of work. So, things like making dentists’ appointments: difficult. I can’t telephone to make the appointment, so I usually have to get someone to do it for me. But if you’re calling the doctor or the dentist, sometimes you don’t want to share personal information. That’s difficult, so then I have to go there in person; and that’s taking time out of my schedule, which is a pain in the butt.
I also have to deal with lack of awareness from service companies. So, today, I had a telephone conversation with an admin assistant, about my Pfizer credit card. And we’d actually filled out this whole form with AmEx, to say “I am deaf. Marie, the admin assistant, is designated as an appropriate person to talk on my behalf.” So, ring up AmEx, and then AmEx said “OK, can we talk to her?” Marie said “No you can’t, she’s deaf.” “Yes, but can I talk to her?” “No you can’t, she can’t hear.” “Oh, right, yes, hmm. That would make it difficult.” And then eventually we did sort of figure it out, and at the end, they said, “Oh, if you’ve got any other questions, please give my telephone number to Caroline.” Marie said “No, I don’t think she will be calling you!” So it’s not really a professional issue, but it is something you are going to have to face, and it is annoying. But I am very fortunate, in that I’ve got a lot of support and help from my colleagues, a lot of support and help from my family, and I’d like to say thank you to these guys. And thank you all for listening.