Editor's Note: After we published our first set of articles in this month's feature, we received an e-mail from one of our readers, telling us how much our coverage of the topic of scientists with disabilities means to him. Although he wishes to remain anonymous, he has agreed to let us share his story here. We hope that funding agencies and science policy-makers on both sides of the Atlantic are paying attention.
I am an early-career scientist on the brink of the next exciting stage of my career. I will soon be returning from a postdoc in the United States to start my first small independent group in Europe. I also happen to have a disability. Not long before I took up my postdoc position in the States I was diagnosed with multiple sclerosis.
Despite the fact that this is a sensitive time in my career, I wanted to share my experience as part of this feature, because reading the articles about this topic on Next Wave has helped me accept the fact that it is OK to ask for extra help. Before, there were days when I thought that I should just find another job and leave the ground to a more energetic person. The message I got from this feature is that people with disabilities should not feel guilty about asking for extra help and changes in the workplace.
When I took the decision to move to the U.S. my symptoms were mild. I was aware that things could get worse, but the offer of joining a very successful group with an exciting research project at the time seemed a very promising career move. Therefore I decided to bet on my health staying stable and, like many other postdocs, I was also betting on the research project working out and on getting along with my new supervisor.
Unfortunately 8 months after arriving I had a disease relapse and since then I have had serious problems walking. I am still able to walk for short distances, but moving around in the lab is very tiring and I cannot work as much as I used to. The most tiring thing is walking from one place to another to use various pieces of equipment; very often by the end of the day I'm so physically tired that I can hardly stand up. Now, when planning my experiments, the biggest consideration is how much walking will be involved.
I'm still able to do experiments and am full of ideas, but I realise that the only way I can remain competitive as a postdoc is if I could have the technical help of someone who could, for example, move my samples around the lab, or indeed institute. But where would you find a PI who is willing to employ a postdoc that needs a full-time technician to help him or her? Probably the only way someone would consider hiring a person with a disability is if there was some special funding to cover the extra costs.
Fortunately, I am at a stage in my career where I can become an independent scientist. I have been for many interviews recently and my main worry has been not to give the impression that I am disabled. As a result these interviews were even more stressful for me than for most scientists going through the same process. I couldn't walk much, and I was very concerned about tripping while moving around. When people asked, I tried to give the impression that my mobility problems were only temporary. I was worried that if I told the whole truth I would be discriminated against.
A department back in Europe has offered me lab space to start a small research group. The department will not give me any long-term guarantees and I will only get a faculty position if I am successful in my research and in my grants applications. I'm about to submit an application for a fellowship, and I want it to be evaluated only on the strength of my scientific proposal; I will not expect any preferential treatment.
Of course, the younger one is, the worse are the problems. PhD students and postdocs are the young minds of science, but often (at least in experimental science), they are the diesel engines of research and on balance a physically weak person is at a greater disadvantage than one without the right intellectual attitude. I have the feeling that the situation is worse in the U.S. because of the generally more energetic approach toward research.
The way research is organised and funded makes it very difficult for people with disabilities to compete equally with others. Individual PI's will almost always view their funding as "personal" money to be spent at their discretion, so students, technicians, and postdocs with disabilities are not cost-effective, and are therefore to be avoided. The only way young people with disabilities can enter or remain in science is if they are encouraged with special support programmes.
Of course it is reassuring that at least in the U.S. things are changing and special support programmes are available. I hope that in Europe, too, the granting agencies will realise the need for such programmes. I think that the funding agencies can and should organise these, but of course the scientific grant application and the disability supplement request should follow different routes. Otherwise there is the risk that disabled scientists may be perceived by their physically able colleagues as second-class scientists.
However, once the grant is awarded I hope that European funding agencies will realise that scientists with disabilities, especially in junior positions, will incur extra costs (such as the need for extra technical help, or extra expenses when travelling to meetings, or the purchase of more suitable equipment). I also hope that universities will be encouraged to make their work places more accessible to people with disabilities.
But above all I hope people realise that, if provided with some extra help especially at the beginning of their career or as a student, people with disabilities can contribute to science as much as others, and in some cases even as much as Stephen Hawking.