Genetics of Deafness, Volunteering, Sports: An Active Life of an Italian Hard of Hearing Young Woman – Part 1

She is widely known as a person with many hats and as a globe trotter. Her deaf friends, when expressing her name in sign language, integrate a sign “globe”. No wonder – Vanessa Migliosi has traveled to almost all continents of the world, from China to Australia and Central America, and is bound to continue her explorations for the rest of her life. Many of her travels are dedicated to the cause of hearing loss advocacy.

I first met Vanessa in 1997 in Malta summer camp for the deaf and hard of hearing. My impression of her was that she possessed an active personality with boundless energy and an unshakable sense of justice. Since then, we have closely worked together in IFHOHYP in tandem for several years where Vanessa was the President and I served as the Vice-President. Vanessa was the first person with a disability to join theAdvisory Council on Youth of the Council of Europe – a body that comprises only 30 representatives of non-governmental youth organizations. The Council provides opinions from the youth organizations on all Council of Europe youth sector activities and influences the agenda of the sector.

Today Vanessa is bridging the worlds of the deaf and hard of hearing, working as the Vice-President of the Italian Deaf Sports Federation (Federazione Sport Sordi Italia) and continuing her advocacy for all people with hearing loss. Having a Master’s degree in biology, she is also working as a teacher in mathematics and science, in a public school with hearing students ranging from 11 to 14 years old.

Karina: Let us start with your background. I know that you studied genetics of deafness and ran the GenDeaf project, but not that long ago, the deaf community was strongly against that kind of research. What is the official position of the Deaf organizations towards genetic research today?

Vanessa: You can remember, that in the past Deaf organizations- indeed, throughout the world, were strongly against research on deafness. Now this position is changing, because the study of genetics has developed, and more and more Deaf and hard of hearing couples seek genetic counseling, so they can know the probability of their children being born with hearing loss. Now Deaf organizations do not oppose genetic research as strongly. It is an issue which is just now becoming more common in society.

Karina: And you did research on the genetics of deafness in several different countries…

Vanessa: True. I did research in Finland and in Spain, because I was deeply interested in the topic. In 1996 I wanted to do a Master’s degree thesis on the genetics of deafness, but I found out the existing research on this topic, at the time, was poorly constructed. I was surprised to discover that hearing loss was one of the last subjects ever studied by genetic specialists. So there were quite a few difficulties for me, when beginning to delve into the research in this field. One of the reasons for such little research was the lack of availability of blood samples and deaf families with high amounts of family members who were willing to give their blood in order to help study the causes of hearing loss. At the time, I couldn’t do my thesis on this topic. After graduation, I found a scholarship that focused on studying the genetics of deafness in Finland and I moved there for several months, because I wanted to know more! Really, I was so surprised that this kind of research began in the1990s, and not earlier.

Karina: What is your personal position/opinion on this issue – why is research needed?

Vanessa: You know, some people thought that I wanted to do this type of research so that genetic deafness could be eliminated. I always replied to that kind of comment with the fact that it is impossible to eliminate it – because genetic mutations occur with all living beings. So even if a method to eliminate deafness is found, new mutations always come up ex-novo (not inherited from the parents). Moreover, it is not technically possible to replace a ‘bad’ gene with another healthy gene. I was so deeply involved in studying the genetics of deafness for the sake of it, to discover what the real causes of deafness are. And I think that people with hearing loss should be aware of it, what’s going on – not in order to avoid deaf babies (or the inverse, only to have deaf babies), but to have a good knowledge and awareness of what happened, is happening, or what to expect.

Karina: What was the main aim of the GenDeaf project and what, in your opinion, is the future of the genetics of deafness?

Vanessa: The main aim of this project was to exchange results of deafness research among different laboratories in Europe and others in the world. Apart from this, we wanted to exchange examples of good practices, new techniques and methods of research. The secondary, but very important, aim was to involve deaf, hard of hearing, hearing parents and cochlear implant organizations together in order to launch a fruitful co-operation, and to provide them with the results of the research and their implications.

I left the research field a few years ago, and only 10 % of ‘deaf’ genes were discovered at that time. In the future, we’ll be able to discover all the genes that could cause deafness (there should be about 300 on the whole) and to understand the mechanism of the hearing and the physiology of the ear.

Karina: Do you plan to continue researching the genetics of deafness?

Vanessa: Not really. I left research, because after I had settled in Rome, it was impossible to continue research in Italy. There are no favorable conditions under which I could conduct good research here as the Italian government is not currently supporting any kind of research in the entire country of Italy. This is why many researchers move abroad.

Karina: Now you are working as a teacher. How did that type of work start for you?

Vanessa: It is interesting that I work in a regular school with teenage students. I think I am the only one or at least one of the few profoundly hard of hearing teachers in mathematics and the sciences in Italy. My work started in September of last year and it has been a challenge, because the children were really surprised to have me, a profoundly hard of hearing person, as their teacher. Some parents were also surprised, but after a few months, as they got to know me, my way of work and my capacities, they realized that my hearing loss doesn’t cause any problems or prevent me from performing my job.

Karina: How difficult it is for a hard of hearing or a deaf person to become a teacher in Italy? What are the main obstacles?

Vanessa: In Italy to become a teacher you have to pass a big examination (only ten to fifteen percent of all people who take it pass it) in order to enroll in a two-year specialized teaching course to become a teacher. When you’ve passed this required course it is quite easy for disabled people to get a job, because according to the law, seven percent of all open employment positions must be given to disabled people.

Karina: During your university education, what assistance was provided for you?

Vanessa: When I entered the University in 1991, no assistance was provided to me at all, because there were no laws enabling assistance to disabled people in participating in University classes. A law was approved when I had already graduated. So when I attended my specialization courses, I had to and could get a palantype service for one program, because I couldn’t understand a professor who was talking in very fast in Roman dialect!

With her openness to new things, Vanessa got involved in work with the Italian Deaf Sports Federation in 2004. Learn more about her experiences, sharing insights on deaf sports in Italy, deaf and hard of hearing ‘worlds’ in Part 2, coming soon!

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