Now in the second year of her PhD in Silvio Parodi's experimental oncology group at the National Institute for Cancer Research in Genoa, Stefania Pasa (see photo) was a studious child who often "preferred to ... study rather than go out to the cinema." Although Latin and Greek were her favourite subjects at school, it was her love of science "and what it can explain and achieve" that led her to study biology at university. However, life was never all work and no play. While as a child she had enjoyed classical dance lessons, with her new-found freedom as a university student, "... the best part of it was to drive my little scooter to the disco ... and then dance, dance, dance, until 2 am!"
Things changed for Pasa at the age of 19. "On the Tuesday after Easter I started to have pain in my spine, in the lumbar area," she explains. The following day she went with her mother to the hospital, only to be sent home with painkillers and an incorrect diagnosis of sciatica. Then, on the Thursday morning, "my legs didn't do as I wanted them to, and I could no longer co-ordinate my movements from my waist down!" Her true condition, a sudden spinal haemorrhage, was finally diagnosed a week later.
This lesion to her spinal cord put her in hospital for 2 months, a rehabilitation centre for a further eight, and the "wheelchair that after a while became my best friend" for the rest of her life. At this point, the easy option would have been to join her father's engineering company, but "economy, commerce, or engineering ... in truth did not interest me much." Instead she made the decision to continue studying. "It gave me a target, a reason to stop crying. So I 'rolled up my sleeves' to let everyone, and above all myself, see that I could do it!" She returned to university to take up her studies where she had left off, 1 year after the spinal haemorrhage had obliged her to suspend her studies.
But Pasa found she had to work hard just to get the basic facilities she needed to allow her to attend the university. The university gave her a grant of a million Italian lires (?500), exempted her from her university payments, and left her to it.
The first issue was simply getting to classes with no public transport accessible to wheelchair users and, because she lived outside the city, no access to the transport provided for the disabled in Genoa. However, with help from her family and friends, she managed to get to her lectures, and things became easier when her mother's car was fitted with manual controls. Then came the fight for a dedicated, and unique at the time, parking place at the university. "I think my request was the most incredible thing I have ever done, because I created a crisis and argued with half the world. From the precise moment when they painted the markings in the car park, and for many months thereafter, it was occupied indiscriminately by anyone. So I blocked the cars in, or I made them move, and I even shouted at all the people responsible!" says Pasa.
Getting the university to provide the things she knew she had a right to took "telephone call after telephone call, letters, and arguments," but eventually toilets were modified, architectural barriers were removed, and ramps were added. Finally, despite being forced to repeat a year because of bureaucratic problems, Pasa completed her degree in 6 years (instead of the usual five in Italy), doing so in the top 3% of her class.
For her degree, Pasa also had to complete a research project. Studying "the growth of chicken embryo spinal neurones" was an obvious choice, and she would have liked to continue the project, but the practicalities soon convinced her otherwise. The standard laboratory instruments all posed their own problems, and the need to manoeuvre a wheelchair using handgrips had a drastic effect on sterile technique!
However, through her degree thesis supervisor, she met Parodi, who was, he says, "impressed by her sharpness of mind" and suggested a new research direction. Although this meant leaving laboratory work, this appeared to be her most "convenient" choice, and it had two specific benefits. First, she moved to the Department of Oncology, Biology and Genetics, which "had been built according to all the necessary laws, including accessibility, and with toilets and car parking spaces for the disabled--a true luxury!" Second, she got a chance to work with computers, "another of my great passions," carrying out her own meta-analysis of the work of others. Parodi had managed to convince her of the future importance of molecular interaction maps based on the work of his close friend Kurt Kohn at the National Cancer Institute in the United States. In December 2001, Pasa won the selection for a Dottorato (PhD) under Parodi's supervision.
Italian PhD students are encouraged to spend time in a research laboratory abroad. Even in the most favourable circumstances, such a visit usually takes some months to arrange. Pasa spent a year organising her visit to Kohn's lab. Potentially the most difficult part was her accommodation, although she finally found a "special family, whose son is also confined to a wheelchair, that rented their basement to me and that live only 20 minutes from the NCI!" Furthermore, Pasa sent her modified "little Fiat 600," a key to her autonomy, ahead by freighter. So, in September last year, Pasa set off for the Laboratory of Molecular Pharmacology in Bethesda, Maryland.
Kohn was "initially reluctant" when Parodi first proposed Pasa's visit "because I didn't know how she and we would manage, and I had had no direct experience with people confined to wheelchairs outside of a hospital setting." However, upon meeting Pasa, he was "impressed by her talent and determination, and by her ability to speak frankly about her problem," and so Pasa got the go-ahead for her 4-month training period.
These were probably the smoothest few months of Pasa's life in research to date, as "in the States, and even alone, I never had any problems because I was in a wheelchair." At work, she found the buildings accessible, parking for the disabled arranged right outside the entrance; in short, "everything worked." So, not only was her stay in the U.S. "truly instructive and productive," but she also earned herself the nickname of "the no-problem girl." Kohn says, "Everyone in the laboratory grew to love her, and her cheerful personality helped everyone. Indeed, we are looking forward to her coming to work with us for a more extended period as a postdoctoral fellow, after she completes her [PhD]."
This may be the final temptation for Pasa to become part of the Italian brain drain. Although life in the U.S. is more expensive, "in Italy, the biggest problems are not in the quality of the research, but in the infrastructure that is made available." Thus the U.S. offers more for "someone in a wheelchair like me." In this, she has the full support of her partner Gabriele, whom she met in the rehabilitation centre.
So, how could things be improved in Italy? At present, Pasa herself has all she needs: "I have my bench, my computer, I work with an excellent group that know me, and if I need any help they are always available!" She knows that while laboratories in the U.S. are also not well adapted for wheelchair users, "the difference between [Italy] and the States is both in the organisation and in the concept that in the States anyone--fat, thin, blind, deaf, with a physical disability--can take part in research."
Changing attitudes at home is an area where Pasa is very active, as president of the Para/Tetraplegic Association of Liguria (see box above), a voluntary organisation that helps those who have suffered spinal cord lesions. One of its aims is to promote "the birth of a new understanding in society": that the disabled, with all their own emotions and desires, are also a part of this world and should be accepted as such.
Indeed, Pasa suggests that research may even be the best place to start the change in attitude towards the disabled; "particularly because a lot of the work comes from reasoning, from ideas and from studying," it is an excellent field in which to show young disabled people that they can make a positive contribution to society, "making research more accessible and available to all," she believes. And Parodi thinks that there has never been a better time for people with disabilities such as Pasa's to make their mark in research. "Biology, until very recently, was ferociously linked to bench work and was mostly empirical, with few exceptions ... but it is becoming possible and progressively more relevant to work ... on the bench work of others" he explains. "As a consequence, in the new incoming biology, not only will people with motor handicaps like Stefania find themes for creative research, but paradoxically their handicap could make of them the architect, rather than the stone-masons, of the cathedral."