A Changing Identity: A Woman's View of her "Disabled" Label.
Maya Lilly |
Thursday, March 11, 2010 at 4:00AM 
Lieke Scheewe (pronounced Lee-ka Shway-wee) is a fellow student at the UN's University for Peace grad program in Costa Rica, majoring in Peace Education. Not only did she have to travel farther than I did to get here, she is a force on campus, continually participating in open mics, workshops and in a leadership capacity. The only difference between Lieke and everyone else on campus? Lieke is in a motorized wheelchair due to FSHD, which stands for FascioScapulohumeral Dystrophy, a genetic, hereditary neuromuscular disease that causes progressive muscular weakness, for which there is currently no cure. In our interview, she explains her view of the world from a literally changing reality, where nothing can be taken for granted.
What is your experience in this world since your birth?
I was born in a little village in the Netherlands called Boskoop, and that’s where I lived until I was 18. I realized when I came to Costa Rica that, for example, when I was going out to buy Christmas gifts for my host family, all the gifts here are so gendered. They are so clearly divided. My parents were very conscious in giving my sister and I a more neutral perspective. The little card that announced my birth was blue. I grew up with toys that were cars and dolls. They didn’t force us into specific gender roles, and my mom was active in women’s organizations, with my grandmother as one of the few women studying a science subject in a woman’s university. We grew up with an implicit idea that we are equal. A gender division was not so clear-cut.
This was only until I became a disabled person.
As a kid, I was wondering about how my experience would be if I were a boy. It was easier for me as a girl. As a boy, you’re really expected to be physically strong, so a boy in a wheelchair would have a harder time getting recognition. There were lower expectations for me as a girl in a wheelchair, so everything I did was amazing. As a girl, people are more easily amazed about what you do, whereas with a disabled boy, he would need to do more to get the same recognition. At a Stephen Hawking level. When you have a disability, people focus on the emotional impacts of the experience, and often assume it’s a negative impact. That you would feel really sad or unappreciated. I think in a way then being a girl is easier because you are more allowed to speak about those emotions. I always wondered what it’s like if you’re a boy, and people assume you must be angry or frustrated. People you do see with disabilities in higher positions are the ones that you would consider less different: they aren’t the ones that look so different or talk so different. They are still the ones that manage to function at a normal threshold.
I have FSHD- It’s Latin, and basically in English means: Face Scapular Humeral Dystrophy, which affects the strength of your muscles in specific areas. It began with my face, so I had speech therapy when I was in kindergarten. It’s a progressive disease, so I was born with perfectly normal muscles except for some in my face. They discovered when I was 8 that I had this muscular disease, because something in my way of walking changed. They started their research then. Until that time, I didn’t have any physical problems. They said that the strength of my muscles would decrease, but they didn’t know at what speed and how far it would go, and there is no treatment. At the moment it’s quite stable. The most rapid decrease was when I was growing fast, in high-school. I had my first wheelchair around 10 years old, but only used it for long day trips and when my parents told me to. Researchers aren’t sure what are the factors that influence the speed.
Did you recognize a difference in the way people started treating you?
As soon as I had this diagnosis, the adults who knew treated me differently, especially my parents. They have expectations of how you are going to grow up, and they want the best future for you. The general idea of people with a disability is that they can’t do what they want to do in life. Unless I wanted to become a top athlete, there is a whole world of possibility. The expectations changed, and it changed the way people treated me. I remember really clearly a moment when I was having dinner with my family, and my father was talking, and at one point he said I was disabled. I said, “What?” What was he talking about? I didn’t feel disabled, and I hardly knew what he meant. I wasn’t in a wheelchair at that point. The next day at school, I told a friend that according to my father, I was disabled. It really was a concept that for other children was invisible at that time. It was interesting how an adult label impacted me.
What labels do you have for yourself? How do you see yourself?
I feel like we constantly change as humans. For me, what I identify with most is a “changing identity”. The more I think about social realities and social structures, gender perspectives, disability perspectives, the more I recognize those different identities within myself. I would always like to try to stay conscious of them being changeable. Disability is definitely the most dominate identity that is first when others see me, but not necessarily first in how I see myself.
How do you respond to people thinking of you as “disabled” first?
I used to be less responsive than I am now, would take it in, reflect on it, or not really do anything about it because I took it for granted, knowing that they would label me as disabled, and have different expectations of me because of that: not expecting me to go to University, not expecting me to travel, a lot of things, not to be an active member of the community. I didn’t question them for a long time. For example, in my high-school, I was the only one in a wheelchair, and there was one accessible toilet which had doors before you could get in, with stairs, so I took it for granted that no one would do anything about it. In the US, it’s different. In the Netherlands, we don’t have this idea of equal access to every public space. I took it for granted that they wouldn’t be trying their best to make things more accessible. There was also a field trip to Paris that no one made an effort of including me. I looked at it as being more my problem than the school’s. That idea has changed a lot, and now I do see how it’s the responsibility of the system. It was towards the end of my University period that I started becoming more vocal. The most prominent advocates for disability rights are men in the global north, but women tend to be in advocacy roles in less -developed Countries.
Why did you decide to travel to UPeace?
I had already traveled a little bit before, so I trusted it was going to be fine. When I was in University, I was in an international undergrad, so got to know a lot of people from different places. My first trip was short and close, to Germany for a few days, but it was a big step I took. It was the first time I had traveled on my own, and took a train from Utrecht to Berlin. You have to call in advance, and there is a special space on trains for people with wheel-chairs. Psychologically, that was a huge step, and everything worked out. (Although I have experienced a few times when a train was leaving and they’d forgotten the ramp, and I had to get off!) One of the things with traveling is that the information is hard to find, not in regards to trains and airplanes which are standard so you can find out on a website, but you do need to know from someone that there are these services in other areas. The biggest issue with that trip was my parents having so much difficulty letting me go. It took quite some time to convince them I was going to be okay. I was 19 years old, an age where I should have been treated like an adult already. The physical barriers were minimum, but the psychological barriers are bigger. No one expected me to travel on my own, so that was already a process that took a lot of talking. Supportive friends have been the relationships that have empowered me and made me aware of what I was able to do. “You’re not able to do this,” “That’s not going to work, too complicated,” was something I heard a lot. I was conditioned in a way to see a lot of problems where there might not be such a problem. My next trip was to visit friends in Mexico, which was huge: flying to another country! They have travel companies that have special procedures for disabilities. But up to that point, I didn’t know I could travel by airplane.
I go to a rehabilitation center every half year, but this kind of information is not something they provided. It’s based around a prominent assumption that my life is going to be very small and contained, even in the rehabilitation centers that are supposed to be empowering.

Next I visited a friend in Portugal, and then my sister in Uganda… with circumstances that were not the easiest. But through those experiences, my parents started to realize that these things are possible, and I know how to find opportunities, and work my way around obstacles. When I applied to UPeace in Costa Rica, my parents didn’t trust that it was going to work. UPeace was really supportive, and wanted to do everything that needed to be done. One of the staff just happened to be in the Netherlands, which helped for him to see me and know what I needed. It was difficult in a sense because a lot of what I needed was not in place: arranging good housing, transportation, ramps to install, but they did a good job of finding what I needed.
What do you want to focus your career on?
I’m in Peace Education. I’d like to go back to the Netherlands first and work with an organization there in peace education. Transforming teaching styles and content of courses are important, but I’d also like to focus on the accessibility of education for students from all types of social groups, to ensure that the population within a school is as diverse as it could be and should be. It adds a lot to the educational experience, and access to education is a fundamental right. Everyone from every social group should have access to the type of education they need, because we still have a very segregated schooling system around the world. I’d like to work with refugees and the fear of them within countries, and I’m also interested in working on the Israeli/Palestinian conflict to help local organizations develop projects there. In my future work, I want to counter xenophobia and labeling people as different on the basis of seeing them as less capable or less valuable. The "this is normal" and "that is different" are ideas I’m working to change.
What is the way to peace?
Realizing that peace is a process is fundamental, and making sure that all the actions we take are in line with the vision we have of a peaceful world. At an individual level- making sure that what you do contributes to a peaceful world, in your interactions and actions. At a country level- making policies where every step involves awareness of the positive and negative consequences that decisions have on the social reality. Especially, being aware that we’ve created these categories for people, and how these social categories impact our reality.
Make sure no one is excluded.

Education,
FSHD,
Lieke Scheewe,
disability,
disabled,
identity,
travel,
wheelchair 





