Being a disabled PhD student is like being on the dance floor with a wheelchair

A fire drill has just been set off in the Maersk Tower, University of Copenhagen. The building’s occupants have been informed that when the alarm goes off at this moment, it has not been set off by flames, but by the university’s staff. So the building is emptied quietly.

Just not on the 15th floor. Here a meeting room is packed with people who do not normally come into the building, and who were not aware of the scheduled fire drill. For them, the situation is serious. Especially because PhD student Louise C. Druedahl is at the meeting, and she is in a wheelchair.

From the 15th floor they call down to the reception: »We have someone in a wheelchair that can’t go down the stairs. What should we do?«

The response they get is of little help: »Take it easy. Nothing is going to happen.« In the reception, they do not know that the people on the 15th have not been informed about the fire drill and believe that the fire is real.

Louise C. Druedahl suddenly finds herself in a situation where she is unable to get away. She needs someone to help her, but this help is not always available. In the event of a fire, it is actually standard procedure to leave people in wheelchairs behind so that fire fighters, hopefully, can get them out. This is confirmed by the person responsible for fire safety in the Maersk Tower to the University Post.

And the Maersk Tower is not the only place that can challenge a person with a disability. If the world of research is an ivory tower, the tower is not always designed for disabled people.

Yet there are, nevertheless, researchers with disabilities who, like Louise C. Druedahl, get their working life to function.

»When will I be outed?«

One of them is Katia Bill Nielsen. She is an anthropologist and has just got her PhD degree from the Department of Science Education at the University of Copenhagen. And she is dyslexic.

She contacted the University Post after reading a featured comment on the University Post by the student Sofie Amalie Olsen, who asked for examples of how it is possible to pursue a career as a researcher with a disability.

»As a student assistant at the University of Copenhagen, I often hear that doing a PhD is no walk in the park,« says Sofie Amalie Olsen, who is visually impaired. »Well then: what would life as a PhD student with a disability be like then? Impossible? Possibly.«

For Katia Bill Nielsen, it is an important topic. She says she »feels an obligation to say things out loud.«

»There are a lot of people who do not say they are dyslexic,« she says, referring to the unfortunate correlation, which many experience, between being dyslexic and feeling stupid. The phenomenon is called impostor syndrome, and it affects more people with disabilities. Even though your external circumstances indicate you are doing well, you feel that your success is somehow fake.

»I feel that I have to prove that I can do something. Even after writing a PhD dissertation, I still feel that I have not been able to prove it. It’s a feeling like: »When will I be outed?«

And skimming texts is not something that you do when you are dyslexic.

Katia Bill Nielsen

When Katia Bill Nielsen needs to read a text, she uses software that reads the text out loud. She follows the words, but a voice reads the text along with her. If she gets a paper handout at a meeting, she spends more time reading it than others. So she needs to get the text in advance.

»And skimming texts is not something that you do when you are dyslexic.

And you can see it when she writes, according to herself. »Even though most people know there is no correlation between intelligence and dyslexia, people laugh at spelling mistakes.«

Katia Bill Nielsen also asks herself how she fits into the world of research with her dyslexia. »Can I be a competitor in this race when I have a disability? The answer is yes I can do it, but I will never be like [the world record sprinter, ed.] Usain Bolt.«

Like being on the dance floor in a wheelchair

Louise C. Druedahl has a PhD from the Faculty of Health and Medical Sciences and is currently working at the Faculty of Law. She uses a wheelchair because of a muscular disease. It was her who was stuck up on the 15th floor of the Maersk Tower.

You can’t get in with a wheelchair if there are three or four high steps to the entrance of a building, or if there is no lift.

»I have now learned that when I intend to go somewhere for the first time, I have to write and ask whether there is wheelchair access,« says Louise C. Druedahl.

There was no access at a compulsory PhD course in one of the University of Copenhagen’s old buildings. »I had to be in charge myself for the booking of rooms for the course and the ordering of lunch so that I could participate,« she says. She had to drop another course because it had to take place in rooms that could not be accessed in a wheelchair.

Life in a wheelchair gets easier when others help out to meet any needs that may arise. But not everyone gets to think that a door is too narrow, or that a set of stairs is an obstacle.

»You face this attitude that everything is completely impossible to change, and who is going to pay for it if we do,« says Louise C. Druedahl.

So you have to be good at not taking ‘no’ for an answer.

»It can be perceived as a bit of a hassle. But when you get to talk to people, you feel that the attitude becomes: Of course we need accessibility. My former boss was a huge support in this.«

»I like the analogy with the dance floor – everyone finds it difficult to get out there. But it is really difficult when you turn up in your wheelchair.«

Harvard calling

Due to her muscular dystrophy, she needs round-the-clock personal assistance, and when she studied abroad, this put her out of reach for government support. The trade union Pharmadanmark and the muscular dystrophy group Muskelsvindfonden described the problem in a featured comment on the media Information.

She ultimately succeeded in studying abroad by way of an research Eliteforsk travel grant of DKK 200,000 from the Ministry of Higher Education and Science, and by paying part of the costs for personal assistance herself.

»I have some colleagues at Harvard who would like to get me back. But I don’t know whether I can go,« she says. »As the rules are right now, I can be out of the country for a maximum of six months a year, because I will otherwise lose the practical assistance I need.«

For Louise C. Druedahl it is a huge opportunity to spend a longer period of time at Harvard University.

»It would be a huge research opportunity for me to learn from, and collaborate with, these world-class researchers, and it will set up a good research network for me. I would take this knowledge and appreciation back home with me. That’s why it’s also good for Danish research to send me abroad.«

Three minute window

Jennie Sejr Junghans is doing her PhD In history and suffers from Crohn’s disease, a chronic condition with inflammation of the intestinal wall leading to abdominal pain with frequent, and sometimes painful, visits to the toilet.

»My disability is invisible. You can’t see on me that something is wrong. But if I share an office with someone, they will notice that I have more sick days than others due to the disease and the immunosuppressive medicine, which means that I am often hit harder by things like ordinary colds and viruses. I also have to go to controls and medical examinations on a regular basis.«

I have a working day that is more unpredictable than other people’s.

Jennie Sejr Junghans

For Jennie Sejr Junghans, the disability therefore also means that she cannot be as productive as her colleagues.

»It gives you no benefits to say you are disabled. The requirements will not be reduced for that reason. So you don’t let everyone know about it all the time. You can get some extra time for exams, but at the research level, there is no time to give.«

For Jennie Sejr Junghans, weekdays are not always a stable routine. »I can wake up at five in the morning with very severe abdominal pain despite the medicine. I have a working day that is more unpredictable than other people’s.«

Sometimes the challenge is that she suddenly needs to go to the bathroom. »There has to be a vacant toilet, because I may only have three minutes.«

Network would help

They all agree that it helps to meet others who have disabilities in the world of research.

»That I dared take the researcher path at all, probably had something to do with me being an assistant to a blind PhD student. I think it is important to be able see others cope with it,« says Jennie Sejr Junghans.

She would like to see a network at the University of Copenhagen. »A safe space where you can openly talk about your challenges and share these things with someone else.«

Everyone with a disability needs advice and guidance, according to Louise C. Druedahl. She has used the patient association of the muscular dystrophy foundation, but she could have used a network for PhD students with a disability.

»You are completely at a loss. Here a network would be really helpful.«

Even though there are many different disabilities, Katia Bill Nielsen points to the value of having »people you can reflect yourself in. This also applies to everyone who »has to struggle with a huge number of applications,« she says.

She hopes a network would support more diversity in the world of research.

»It would be great if we had a diverse world of researchers. We see and experience things differently. Research is not something separate from the people who do it,« she says.

»There should be a network at the University of Copenhagen. Then maybe I should do something myself. Maybe I should start it?«