Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI).

How it all started

We do the interview on Zoom, since both ladies are at risk for Covid19. But what might otherwise have been a difficult interview situation goes surprisingly easy. It turns out that Ingunn and Rebecca almost complete each other’s sentences. And it’s not just because they’ve been volunteering in the same organizations.

“We’ve known each other since we were 11 years old,” says Ingunn.

-We were both at a summer camp for children with various disabilities at Frambu. We are the same age, and have the same rare condition, and a fairly similar type of OI. It became a special acquaintance,” says Rebecca.

But the first year you broke your leg the first day, Ingunn. Yes, I ended up in hospital in the middle of the summer holidays.

Before breaking her leg, Ingunn was fascinated by Rebecca speaking English. Language and traveling are among Ingunn’s greatest interests, and Rebecca moved from the United States to Norway when she was ten. The girls wrote letters to each other before they met again at the same camp the following year. And the years after that again. Eventually they became inseparable. But Ingunn lived at Stord, Rebecca in Egersund.

We met at the same camp from the age of 11 to 16. When we finished senior high school we moved to Oslo, started university and got a student apartment in the same building. Since then, we’ve been following each other closely. It’s probably been important for the commitment we have, that we’ve had each other,” says Rebecca.

Black Pearl Awards

EURORDIS is a European umbrella organization with more than 900 member organizations, representing people with rare diseases. Each year, the “Black Pearl Awards” is awarded to people and stakeholders who have excelled at their efforts for rare diseases. This year the prize in the volunteering category goes to Ingunn Westerheim and Rebecca Tvedt Skarberg.

Ingunn is president of Osteogenesis Imperfecta Federation Europe (OIFE), a European umbrella organization for 36 OI organizations. Rebecca has been a patient representative (ePAG) in the European Reference Network for Rare Bone Diseases (ERN-BOND), suggested by OIFE. OI stands for osteogenesis imperfecta, a diagnosis that both Westerheim and  Skarberg have themselves.

How does OI connect you?

Some people have the same religion, others have the same football club. You have the same diagnosis. How does this make you make you similar?

“In quite a few ways,” says Ingunn.

“I know many people with OI, since I have been the leader of both the Norwegian and the international organization for many years. Fifty per cent of those on my friend list have OI themselves, have children with OI or are professionals who work with OI. There is a strong feeling of community in the OI-field both nationally and internationally. I think it’s about having shared experiences from an early age. Having grown up with a lot of hospital stays and having the same pains, wondering about the same things and being frustrated with things that don’t work or things that can be improved.

When we were 11, we weren’t that interested in talking about OI. But with similar experiences, you understand a lot of each other without having to talk about those things. That’s probably the most important background for our friendship today.

How does a rare condition affect you?

How do you feel about having a rare diagnosis?

They’re thinking.

“You don’t want to overdramatize it, because everyone has something” says Rebecca.

“We have a visible disability, which people may automatically think that characterizes us in all areas of life.” But there may be other things that characterize a person more. I’m not saying that one is not affected by it, but it has been important for both Ingunn and me, to get an education, a job, relationships and to have experiences and interests like everyone else. To create an identity that has nothing to do with the diagnosis.

Ingunn takes over:
-At the same time, I have to admit, since I have a partner who has the same diagnosis: He sometimes thinks I’m too concerned (or even obsessed) about OI. I think about OI and OIFE almost all the time. But it has more to do with my role as OIFE president and not because of the diagnosis itself. 

Work life & career choices

She explains that when she was a newly qualified lawyer and applied for a job, she received an offer from two different employers; the job she currently has in the Norwegian Disability Federation (FFO), and a job in the Directorate of Labour & Welfare. She chose the latter, partly because the job itself had nothing to do with disability.

“I never told my colleagues the reason behind my disability, I wanted to be Ingunn, a professional and a lawyer and not “the girl in the wheelchair.” I think the people I worked with were certainly curious about why I was in a wheelchair, but they never dared to ask.

Rebecca is a trained social worker, and she worked for many years for the town’s welfare authorities. Eventually, interest in rare diagnoses led her to a job in the National Advisory Unit for Rare Disorders (NKSD). Rebecca is interested in finding the similarities between people living with rare diagnoses. She even starting working more hours per week when she switched jobs, because she got so much energy from it.

-Ingunn, you’re a lawyer, and Rebecca, you’re a social worker, professions where you help other people. Do your career choices have anything to do with the disease, do you think?

Not because we’re more concerned with helping people, I think. But we have both chosen professions that have to do with words and communication. When you can’t climb trees and run in the woods, different talents might develop, Ingunn says.

Growing up as the odd one out

“We have probably been concerned about disability rights and accessibility because we have a visible disability.” You become aware early on that you’re different,” says Rebecca.

I felt especially different when it came to things like online dating and stuff. Or going out on the town. Then I could get stupid comments,” Ingunn says.

“But I feel like those things get easier with age,” says Rebecca.

And I also think the prejudices against people with disabilities have diminished. At least in Oslo. I’m glad I don’t live in a small town anymore, and who’s the only person in a wheelchair. You just become too visible,” says Ingunn.

“We have that in common,” says Rebecca.

Rebecca moved from the United States to the small town Egersund when she was ten years old. She will never forget her first day of school in Norway, how the white minibus stopped in the school yard and had Rebecca roll out in her American electrical wheelchair while all the other children stood watching. They’d never seen anything like that before. Rebecca knew five words in Norwegian and felt very different.

‘The school that was closest to where we lived and where my brother went, wasn’t wheelchair accessible. So it was decided that I was to attend a school further afield. “I also ended up further away from my friends and neighborhood,” says Rebecca.

Ingunn’s school was also not wheelchair accessible, and she had to be carried up and down stairs and often be inside during recess.

‘It’s hard to be included in the social life when it takes 25 minutes to get out into the schoolyard. During my entire school days, from the age of seven to 25, I only had two years in a wheelchair accessible school. There have been a lot of stairs and keys and carrying and lifts that don’t work.

She pauses.

Some people think that a lot of people with OI are very intelligent. I think it’s more about becoming very verbal. One must explain difficult things to doctors and parents and other children. One becomes solution-oriented by having OI.

“We can also live with the fact that people think we’re very smart,” says Rebecca.

They laugh.

I think a lot has to do with being met with expectations from those around one. In our house, I was always expected to go to school, even if I had broken an arm or a leg. I’m very happy about that today,” Rebecca says.

Access & universal design

How is Norway doing with universal design today?

-After 2010 it’s gotten better, because we’ve got strict legislation in this field. But schools are very much lagging behind, because the laws only apply to new constructions. There are a lot of old and inaccessible schools around,” says Ingunn.

“You also notice that there’s a lot left in people’s attitudes,” says Rebecca.

“If I’m going to give a lecture somewhere, I often find that there are only stairs to the podium where I’m going to talk, even if I’ve called in advance.” People are not used to thinking that someone sitting in a wheelchair can have such a role.

Ingunn nods.

I never felt discriminated against when I was growing up. But maybe it was more a deliberate choice or lack of awareness. Things were as they were, and I was mostly concerned with how I could join activities, and not whether I was discriminated against or not. Not until I got older. I’m not going to let myself carry up a flight of stairs to give a lecture anymore.

“Neither am I,” says Rebecca.

I accepted much more things before. “It’s okay, if only I get to be a part of this.” That’s not how I think anymore.

Discrimination & activism

Rebecca talks about the value of having role models. Conferences she and Ingunn have been attending at home and abroad, where they have met strong people and activists who demand things and who have had a very different awareness of human rights. Ingunn also mentions the work of the Norwegian Anti-Discrimination Act.

“Ironically, I have almost never felt so discriminated against as when I was at attending a hearing on this upcoming law in Parliament, where I was going to give a speech on behalf of the Norwegian OI Association,” says Ingunn.

I had to stand outside on the street and call a lot of people to find out how I got in. Then I got locked in via a side entrance in the basement and go through many long corridors. The Parliament is an old building. But it has become more accessible now fortunately. So it is possible, if you want it enough.

She continues:

I remember being in social media debates about accessibility. “It’s just about attitudes, we don’t need laws and economic measures,” people said. I thought it was just nonsense. What really works, is strict legislation and economic sanctions if people don’t follow regulations. Look at the case of Vipps (huge mobile pay company). Only when the daily fines arrived, the app was made accessible to people with vision impairments. This year Vipps received the Norwegian accessibility award. First comes the law, then the financial consequences, and then it does something about the attitudes of people.

“I think it’s about accountability,” says Rebecca.

“People can say that they don’t discriminate on purpose, that they can’t help that the building is inaccessible.” But that doesn’t help me much when I’m standing outside on the street, trying to get in.

Living with OI

OI is a rare diagnosis, and interviewing Rebecca and Ingunn about their efforts for people with rare diagnoses also requires talking a little about the diagnosis itself. And this is exactly what we need to talk about before we do. For none of them want to be “the one with OI”, having spent a lifetime trying to create a life in which they get to be complete personalities. Rebecca mentions an interview in which the headline was about how many fractures she had suffered, although it was only mentioned in one small sentence in the interview itself.

“I understand that it can easily happen, but we’re much more concerned with working for rights, and better treatment and services for those with OI, then portraying ourselves as a person people should be sorry for. At the same time, we want to spread awareness about OI, and in such circumstances it can be easy to use ourselves and our health situation as an example. But when we are out speaking at international conferences or in discussions with doctors and other professionals, we are very conscious not to do exactly that. If you only talk about yourself and your personal experiences without taking the broader perspective, you are not taken seriously. You become a patient instead of a patient representative,” says Rebecca.

She continues:

-OI is a diagnosis with great variations. On Ingunn and me it is very visible, while on others it can be impossible to see. It is important that doctors and health professionals know, not to mention parents who have a new child with the diagnosis. Visible or not visible – it is absolutely possible to live a good life with OI.

Rebecca was born with multiple broken bones. Until she was seven, Rebecca broke her leg often, before things calmed down. She reckons that in total she has had about a hundred broken bones during her life. OI is a genetic disease caused by abnormal production of collagen in the body. This affects the skeleton and causes brittle bones. However, since collagen is found in all connective tissue in the body, OI can affect everything from hearing to muscles, tendons and internal organs. Today Rebecca will say that her biggest challenges are not broken bones, but fatigue and chronic pain.

Distraction as pain relief

– If I break a leg, it hurts terribly?

-Yes, and there is no pain discount that comes with an OI diagnosis. A lot of people think so. Pain doctors are a little conflicted about what happens when you live a lifetime with pain. Some research shows that it can hurt even more, the more fractures you have, says Rebecca.

But they’ve gotten better at pain relief now compared to when I was a kid. Back then there wasn’t much painkillers in the acute phase, which was probably quite common. Many adults with OI have some painful memories from childhood because of this,” says Ingunn.

She continues:

I haven’t had as many fractures as Rebecca. I was born with two fractures in my femurs, but since I had normal height and weight, the doctors didn’t understand why I cried so much. It took almost a week before I got the diagnosis. I also had a lot of fractures until I was five or six years old, then I had rodding surgery of both femurs. It reduced the fractures quite a bit. After that, I maybe broke a bone or two a year, until puberty, when it was more about rib fractures or compression fractures, things like that.

How do you get good at coping with pain?

“We’re still wondering,” says Ingunn.

-When it comes to the acute pain, it’s all about pain relief and immediate medical attention. But when it comes to the long-term pain, there are things like organizational work, my job,  things I find fun and engaging, that help. Things that take my attention. And it’s a coping strategy for me,” says Rebecca.

“Distraction is often the best pain relief,” says Ingunn.

– But I also use medication. It’s probably a little taboo for some. Some people with OI do not use any medications, almost by principle. But I want to be a part of happenings, so I choose to take painkillers to be active. Each one has to find his balance. A solution that works for some is not necessarily right for others.

How we got involved in volunteer work

It was coincidences that led Ingunn to start organizational work; She had just finished law school and was bored and unemployed at the age of 25. Therefore, she said yes when the nomination committee asked if she could take over as chairman of the Norwegian OI Association. The plan was to sit for a year, but it ended up with 15. Then she was ready for new and greater challenges and threw herself into the position as head of the international OI organization.

“Being a leader of the OIFE has been both exciting, terrifying but first and foremost incredibly rewarding. The position has become an all-consuming hobby where I have learned a lot and become acquainted with many exciting people, not least my partner, who is from Switzerland. We met at a conference in Finland in 2014.

I’ve been able to travel a lot, which I love very much. And not least, I have been able to lead the organization at a time when we see a lot of positive development both in terms of research, knowledge and opportunities for meaningful involvement from those who have the diagnosis themselves,” says Ingunn.

Rebecca nods.

I don’t get easily drained from energy from working on organizational work. It’s also my own services and rights I’m working to improve. We were tired from being met with more questions than answers, that no one knew anything about OI, especially in adults. That’s what’s behind our engagement.

What’s it like to win this award together?

– It’s very nice, and a little unreal. The fact that we met as eleven-year-olds, and that we’ve been following each other, that we’ve had so much fun together, it’s meant a lot,” says Rebecca.

“To be honest, I thought that the Black Pearl Awards for volunteers was one of those things you got when you retired, too long and faithful service,” says Ingunn.

– And then you got it now?

– Yes, can you imagine that! I’m not going to quit quite yet…

Interview by: Kristine Hovda (translated by Ingunn Westerheim)
Photos by: Fartein Rudjord