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Interview with Maxine J. Sutcliffe Ph.D., Director of Cytogenetics and Molecular Cytogenetics, All Children's Hospital

Maxine J. Sutcliffe, PhD

July 7, 2003
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Maxine J. Sutcliffe PhD
Director of Cytogenetics and Molecular Cytogenetics, Department of Pathology,
All Children's Hospital.
Associate Professor of Pediatrics, University of South Florida.
Winner: OTICON FOCUS ON PEOPLE Award.

AO/Beck:
Hi Dr. Sutcliffe. It is an honor to work with you. You're a fascinating person and I had the honor of learning about you through the Oticon FOCUS ON PEOPLE awards. Would you review your education for us?

Sutcliffe: Good morning Dr. Beck. You'll probably think I have an unusual and varied background. I traveled extensively with my father around the world as a youngster. It's been a wonderful life, but this was highly disrupting to regular schooling, and so I decided in my late 20's that I wanted to go back and get some kind of formal education. I put myself (with great support from my husband) through school and went into higher education after the age of 30.

AO/Beck: Going to school as an adult is a very different experience, it takes amazing drive and fortitude -- and I know you possess both! Please tell us where you grew up?

Sutcliffe: I was born and raised in England for the first 10 years and then accompanied my parents to Africa and the Middle East. Later as an adult and working as a secretary, I spent time in Europe and eventually returned to the Middle East. By the time I was 33, it was time to return to England for pre-university schooling, I suppose it's something like high school, because I had to obtain some science/math subjects to make myself eligible for university studies.

AO/Beck: And then after that you started your formal university-based education?

Sutcliffe: Yes. I did that for two years and then entered university and did a Bachelor of Science degree at the University of London in Genetics. Following that, I was approached by one of my mentors who suggested I might be interested in doing a PhD. I went to a different college at University of London and undertook my PhD with the Medical Research Council of UK. In England PhD courses are somewhat different than the United States. We don't necessarily have to do a Masters degree between bachelors and PhD. Provided you score within the upper two categories of the final exams of an Honors degree, this gives eligibility for PhD programs. I proceeded with the PhD studies in developmental genetics for the next three years and at the end of the three-year period, I wrote and defended my thesis.

AO/Beck: What year was it that you completed your PhD, and what was the topic?

Sutcliffe: I completed the work for my PhD in 1989, and 1990 was the year it was published and when I was awarded my PhD. The title was Y Chromosome Effects on the Kinetics of Spermatogenesis in the Developing Mouse. It was a study of sex reversal and male infertility in mice as a model for investigation of human male infertility. After that I did a research Fellowship at the University of London working with deaf mice (the group were trying to map the gene responsible for their deafness). Yes, mice can be deaf as well - we tested them by their startle response to a tuning fork. Then I came to the United States to attend a two year Fellowship training program in human genetics that prepared me for the examinations and Board certification in my field. Finally, in 1996, I was able to qualify for licensure for the professional position that I hold today.

AO/Beck: That's amazing work, and although I would enjoy learning about that, let me refocus a little. Can you tell us about your hearing loss. When did you first notice it and what problems did you experience as a hearing impaired person working in these challenging environments?

Sutcliffe: I was unaware of hearing loss as a child or as a teenager. I'm not sure whether I had the hearing loss then or not, but there were certainly no obvious hearing problems during my schooling. I was used to associating with, and hearing, people for whom English was not their first language and also used to speaking more slowly for this reason. My first realization of hearing difficulty was at age 22. I had returned to England for a short period to do a summer job at London airport working as a ground hostess meeting flights. In those days passengers used mobile steps to board and exit flights and were taken out and met from the plane by buses. When my name was called for the next roster, my work colleagues would say, Why aren't you responding? That was the first time I realized that I couldn't distinguish my name being called across the overhead speakers. So I was 22 when I first realized I had a problem and went for a hearing test and check-up and was provided with hearing aids. I was told I had a sensorineural hearing loss, the cause was unknown but thought it likely to be progressive, they didn't think there was a cure and but suggested that hearing aids might help.

AO/Beck: Can you describe your experience with hearing aids?

Sutcliffe: The biggest problems for me over the years was that the hearing loss is progressive - so there is a moving target to deal with and that my hearing loss has always involved some frequencies and not others. Essentially the loss at the beginning was only in the high frequencies. Now there is also hearing loss in the mid-frequencies, and I have residual hearing only in the low tones. Hearing aids traditionally amplified all sounds, so I was blasted with low tones (which I didn't need) whilst barely picking up the higher tones, which I needed. I think I have had seven or eight different hearing aids over the years, and I usually change them every four or five years to take advantage of new technology. Initially, I was fitted with only one hearing aid as there was discrepancy in my hearing loss, but I have had bilateral hearing aids for at least 15 years. I do hear more range of sounds and some better sounds with hearing aids but their usefulness is limited for my particular type of hearing loss.

AO/Beck: Could you describe for me the type and degree of hearing loss?

Sutcliffe: I would prefer to send you my audiogram, and then I'll request that you describe it for me!

AO/Beck:
Thanks to the Internet, I have it here....Your hearing loss is an inner ear hearing loss, which is also called a sensorineural hearing loss. The two ears are now similar, so I will speak in terms of the average hearing loss across both ears. In the low frequencies, at 250 Hz, your hearing is quite normal at 10 dB. At 500 Hz, the hearing loss is 50 dB, and at 750 Hz, the hearing loss is 100 dB, and for all frequencies above 1000 Hz, the hearing loss is 100 dB or worse. This is what is referred to as a corner audiogram. Additionally, your discrimination ability, or your ability to recognize words correctly is about 58 percent. In essence, this means you are hearing the lowest pitches at a normal loudness, but you're essentially not hearing any tones higher than about 750 Hz. So, for people with low pitched voices like mine, you'll do better, and for children's voices and high pitched voices, it will be more difficult. I would expect that with male voices, you can do OK on the phone sometimes, but most voices will be very difficult on the telephone.

Sutcliffe: I think that sounds correct and that's essentially what I've been told before. I already mentioned that my hearing loss was progressive and by that I mean there has been gradual worsening at the different frequencies so it has not always been as bad as it is now. This has been a great advantage because I have been able to adapt slowly. I know from previous hearing tests that my hearing is quite bad but apparently it is usually not so obvious to whomever I am speaking with because I don't have dysfunctional speech. I use the regular telephone many times a day in my work, with varying levels of success. It is strange that although my hearing loss is roughly the same in each ear, I can definitely only use the telephone with one ear. Also I hear sounds differently than other people, but I do hear sounds. For example, if it's a piano keyboard I hear the lower third of the keys, and as you go up the scale I just hear the tapping of the hammers on the strings, but I don't hear the notes.

AO/Beck: That's an interesting way to describe it. The tapping of the hammers on the strings is a low pitch thud and that's usually not perceptible as it's usually buried under, or masked, by the note itself. So the sounds you hear from the piano would be quite distorted. That's a very interesting analogy.

Sutcliffe: I have noticed that in other situations too. During some of my hearing tests in years past, I had to press the button when I heard a noise. I pressed the button because I heard a noise, but I didn't realize (and neither did the technologist) that it wasn't the noise I was supposed to be hearing! So there were discrepancies in my scores -- and it took me a long time to realize that!

AO/Beck: How do get by at the many professional meetings and lectures you attend?

Sutcliffe: Note taking from the lecturer is a bit of a struggle at conferences, but nowadays, most facilities provide assistive hearing devices. I just go a little ahead of time and ask for whatever assistive hearing devices they have. It is also quite tiring and towards the end of a long day I find myself mentally switching off from trying to hear and just writing notes from the slides. But I must say it's actually wonderful, the equipment available and the fact that they are prepared to loan it to you. I also teach and when lecturing medical students, for example, I announce the hearing difficulty at the beginning of the first lecture but insist it must not stop questions. I just get assistance from someone in the front row who repeats the question to me (and the class) at a distance I can lip-read/hear.

AO/Beck: What are your thoughts relating to cochlear implants?

Sutcliffe: The idea was introduced to me about two years ago as apparently I meet the criteria for eligibility. It was suggested to me that I review the pros and cons of cochlear implants for future planning. It is something I probably will require at some point and it makes sense to become familiar with it. I am nervous at the prospect because this would not be a gradual adaptation, as I am used to. I have been told that there is a fairly sudden dramatic change whilst relearning sounds. I am not sure how I would cope professionally. But I'm very appreciative that cochlear implants are available, as that provides me with hope and the realization that if I lose all my hearing, there are alternatives to being deaf. I will probably not ever have to face being in a totally silent world and that is wonderful because I really enjoy sounds.

AO/Beck: I think that's a good way to look at it. In the meantime, do you think of yourself as hearing impaired ?

Sutcliffe: I have never considered my hearing problem to be a major problem, it's just annoying sometimes and an inconvenience. I've never really seen it as a disability. I mean if you ask me, I'll say, Yes, I have hearing loss and there is no embarrassment in explaining this. It's just irritating to me, but in the cosmic scheme of things, it's not a big deal. Nowadays I can't follow TV programs or movies, and I know there are technologies that will help, but I haven't got around to this yet perhaps because I don't watch TV very much anyway. I know that now I would benefit from the newer resources available and it's about time I investigated this further.

Incidentally, a little anecdote that might interest I always inform people at interviews of my hearing loss because of the effects it will have on potential colleagues but I usually don't reveal it until the end of the interview when I am being offered the position! On one of these occasions, the potential future boss started laughing. He said he had noticed I had hung onto his every word and he had my rapt attention throughout the interview and he was complementing himself that it was because he was performing so well and describing the position so interestingly! He told me that my hearing loss could be viewed as a great asset because I gave such undivided attention that was most flattering.

AO/Beck: It seems to me you're very much aware of what you don't hear?

Sutcliffe: Yes, I think so. I cannot tell the difference between fat, sat, hat, or cat if someone else says them. I can say the different sounds, and I can hear the differences when I say them, but when others speak, all I hear is the a.. sound. I realize a lot of it is focusing on the topic we're talking about in order to make sense of the sentence. So even though I don't hear many of the words, I hear the sounds and then put it together because I know the context - but there is often a little delay. Of course, sometimes I put it together incorrectly (which can be very amusing), or some people might get the impression that I'm stupid or slow because I am not coming back with a response as quickly as they expect.

AO/Beck: I think those are good observations and you really seem to have a comprehensive understanding of your hearing loss and the related issues. I wonder if you can tell us why you won the Oticon Focus on People Award?

Sutcliffe: Well, I was surprised to win. Apparently my audiologist believed that I accomplished a great deal professionally after my hearing loss, and that I didn't use my hearing loss as a prop for not achieving. But again, I don't view my hearing loss as a real disability. She did not tell me her views and I was astonished when notified. My thought is that by telling this story and then being given the award, perhaps this will prove motivational for others. That's why I'm more than willing for my hearing loss and my medical records to be published, because I think it does not have to be a handicap at all. I am full of admiration for people who are totally deaf from birth and yet manage in a hearing world. They're the ones who should have the award, rather than me, because I had so many advantages to begin with and it's not been such a struggle for me. For example I had the opportunity to attend lip reading classes along the way because of the gradual hearing loss. Also, there's more awareness now and I think things like this Oticon Award and this interview are ways of increasing awareness that will allow more and more things to be researched and developed and made available. I sincerely hope that other people will read this and be motivated to achieve whatever they set their minds to because almost anything is possible.

AO/Beck: Well, I find it motivational and I want to thank you for your time. It's a pleasure to speak with you and I wish you continued success, and again, congratulations on the Oticon Focus on People Award.

Sutcliffe: Thanks Dr. Beck. I appreciate your time and enjoyed talking with and hearing you.

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Maxine J. Sutcliffe, PhD

Director of Cytogenetics and Molecular Cytogenetics, All Children's Hospital



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