Jennie Juulia — Finland’s Naked Truth

Title: High Concepts. Image: Tan tea bag hang from strings, imprinted with message "You never know how strong you are until being strong is the only choice you have".

When I first speak with artist and activist Jenni-Juulia Walinheimo-Heimonen in her native Finland, she has a small admission to make: “When we set this up, I forgot it was my wedding anniversary!” When I suggest we reschedule, she says no, that she and her husband have already spent a lovely day together. Walinheimo- Heimonen is a busy mother of two, with an active career as a textile artist, who also makes edgy art videos, gives provocative public talks, and works with disability organizations. She’s a powerful change agent who uses her art and activism to dismantle old paradigms about people with disabilities and to spotlight taboo subjects, such as the high rate of abuse women with disabilities face. She also has osteogenesis imperfecta (OI), commonly known as brittle bone disease, a congenital bone disorder characterized by fragile bones that are prone to fracture. Although Finland is revered as a “Nordic paradise” for its stellar educational system and universal health care coverage among other attributes, Walinheimo-Heimonen speaks openly about its rigid, one-size-fits-all approach to people with disabilities. During our conversation, she’s articulate and impassioned, speaking rapidly at times, about her creative process, about how assistive technology should be more personalized, and about her efforts to change the attitudes that keep people with disabilities from full inclusion.

Paula Fitzgerald: You’re a textile artist and an activist. How do these two intersect?

Jenni-Juulia Wallinheimo-Heimonen: In Finland I use the term “political disability art”, but I’m not at all political in the traditional way. My art does not represent any political party or political trend; it’s about human rights. Nowadays, I’m also making videos and giving performative speeches and doing more conceptual art. I like to create new terms in the disability field. In small countries, such as Finland, it’s quite easy to get new terms accepted among people with disabilities. I work with several disability organizations, so I have many opportunities to share these new terms. Happily, I’ve noticed that people use them. It’s kind of an art game.

Fitzgerald: You say it’s easy to get people with disabilities in Finland to adopt new vocabulary. Why? And what are some of the new terms you’ve introduced?

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Wallinheimo-Heimonen: I think it’s largely because of the size of our country. We have only five million people, and there are several large disability associations, and most people with a disability belong to at least one of them. The field of persons with disabilities is quite small here. We all know each other. We know who’s active in the organizations. When you give speeches, other people adopt your words, your sentences, and so on. I also think this is a way to do the art, because it’s very important what kind of words you use when you talk about disability.

And this is the tragedy, that we are speaking English now, because I cannot play with words because my English is not that strong. But here, I’m always trying to find the positive words, the ones that demonstrate our potential, and not talking about long-term patient care, or this kind of traditional medical disability talk.

Fitzgerald: I know translation is tricky, but can you give me a few examples of terms you’ve created?

Wallinheimo-Heimonen: My best-known term is “kiltteysrasismi,” which translates into “kindness-discrimination”. I wrote about it in 2005, and I’ve recently seen it used even in some mainstream blogs and columns. With the term, I mean situations in which we are not given honest critical reviews because of our disability. Or, we are protected against alleged failure or embarrassment without getting a chance to try. Situations in which kind people, with protection in mind, actually deny us the opportunities to grow and develop. Kindness-discrimination makes it difficult for us to move forward in life or to work because we can’t trust the feedback we get. People think they are doing us a favor with “kindness-discrimination”, but it is a form of subjucation and pity wrapped in smiles and false praise. My latest term is “onion-explanations.” These are answers we get when we demand our rights. We get several layers of explanations, which are often weepy and strange and do not tell the real reasons for denying us something.

Fitzgerald: Those are insightful and right on! So how long have you been an artist?

Wallinheimo-Heimonen: I was born into an artistic family. My mother was a graphic designer, so I was making art even before studying art. I graduated with a degree in textile art in 2002 from Helsinki University of Industrial Arts, but I started almost immediately creating conceptual art. I was lucky in that 2003 was the European Year of Persons with Disabilities, so the European Union was supporting many projects by persons with disabilities from all around Europe. And in Finland we had a big project, which was a big gallery in the city center. We were given five-minutes on the morning news shows. We got a lot of attention from the public and the media, and the art world became more interested in what we were doing. I had just graduated, so I jumped into this field. It was kind of pioneering work back then, even though it was only 10 years ago.

Fitzgerald: It sounds like the timing was just right for what you were doing.

Wallinheimo-Heimonen: Exactly. But when I read about what is happening in Great Britain or the US, you all started this in the ‘60s and ‘70s, so we’re coming a bit late to the disability art world in Finland.Artist Jenni-Juulia Wlinheimo-Heimonen standing, speaking with a backdrop of a projection screen. Bottom right: Logo of Creative Mornings, Helsinki

Fitzgerald: We still have a ways to go!

Wallinheimo-Heimonen: (laughs)

Fitzgerald: Tell me more about your family. Did you grow up in Helsinki?

Wallinheimo-Heimonen: Yes, I grew up in Helsinki. I now live 25 kilometers away. My mother was young, just 19, when I was born. My parents worked all the time, so we had a happy family life. Since my mom was a graphic designer, I would play under the light table in the ‘70s and ‘80s as she worked on a layout for a newspaper. I had all the materials and all kinds of colors to play with. That was really how I started. And then came computers, and all this paper and all that stuff was taken away, but I was also much older by then. My father was a car mechanic; he would bring us really nice stuff to play with, too. (laughs)

Fitzgerald: Did both of your parents have brittle bone disease?
Wallinheimo-Heimonen: My mother has brittle bone disease, and she’s a second-generation. Her father had it, because we have some color photographs of him where you can see the blue sclerae in his eyes, and we also have his letters from all kinds of health spas—the places where you go to improve your health. They are really funny, because he wasn’t diagnosed, he was just sent there to get fresh air and to get stronger. He would write to his parents, “I’m doing well, but my leg still hurts a bit.” He was the first mutation, and then my grandfather had two kids, my mom and her brother. My mom inherited it, and then after my mom, both my sister and I have it. My sister has two children with OI, and both of my children have inherited it. The majority of my family—seven out of eight—were born with the condition.

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Fitzgerald: It sounds like everyone lives a very full and active life, yes?

Wallinheimo-Heimonen: (laughs) Exactly, yes! My sister is a nurse, and my mother is still working. It has never stopped us from doing anything. We have been thinking we have some sort of OI spirit, which helps us to persevere. I didn’t grow up with a model in which disability was about limitations. My mom told us, “Clean your room,” and we did. That was the normal thing to do. I wasn’t protected or told to avoid things because of my condition.

Fitzgerald: So you did everything other kids did, participating in school activities?

Wallinheimo-Heimonen: The only thing I didn’t do was ice skate, which is popular here in the schools during wintertime, but I did everything else. I went swimming when others went ice skating. I cannot imagine doing anything different. I didn’t need to use any assistive equipment. My condition didn’t show so easily, only the teachers knew, and my schoolmates were told only to be careful with me and not to push. I love to do crafts and small things with my hands, so I wasn’t very active. My sister had many more fractures than I did because she was the wild girl, and I was the calm one, sitting, sewing and painting. So I didn’t break limbs so much as a child. But I think I’m now paying the price for that, because when you don’t use your body so much, now that I’m getting older, I have broken some bones—stress fractures on the small part of my spine. This happens when you don’t exercise enough. But my sister is much stronger now, because she was always taking better care of herself through therapy and gymnastics and these types of things. I never did. But I wasn’t treated any differently.

Fitzgerald: Your mother sounds very smart in how she handled the condition with you and your sister.

Wallinheimo-Heimonen: She didn’t have a choice. I also think that she was young and disabled, and she and my father didn’t have much money, so we had to keep life going. Smart, yes, but it was also survival techniques.

Jenni-Juulia dressed in colorful flowers is on her knees drilling into a board next to a beaded cone

Fitzgerald: You gave a thought-provoking talk on the topic of ugly for CreativeMornings, in which you gradually removed all your beauty enhancements— your fake eyelashes, hair extensions, etc. Why this topic and approach?

Wallinheimo-Heimonen: The topic was actually given to me. All around the world, the topic of ugly was the theme for January. I was a bit surprised that they wanted a disability activist to talk about ugly, because I usually don’t combine ugly and disability, so it was a really difficult topic. That’s why I was trying to play with norms. Nowadays, so-called normality may be abnormal, like the beauty industry and wearing fake eyelashes, which I take off during my talk and used to show how difficult it is to be a person with a disability in this world because of these beauty ideals, where all the time you’re supposed to try to look better. And I was playing this game, too, when I was younger. I believed that I should all the time be doing something to make myself look better.

Fitzgerald: How did you get past the body image issues that so many women deal with?

Wallinheimo-Heimonen: I was really thinking hard about this issue just this morning. It’s funny that you’re asking, because I was joking with my husband that nine years ago I almost cancelled our blind date, because I didn’t like blind dates. I didn’t have anything to wear, and I thought he’s not going to accept me anyway; I don’t look pretty enough and all that. And then I put on a corset from China, to make my pants fit better, which made me feel very uncomfortable during the date, and then this morning I thought, “Oh, my God, nine years later and I’m going through the same thing, talking about ugly and showing the public all these kinds of fake things.”

Fitzgerald: This refusal to wear the mask and to the play the beauty game—what’s this about for you personally?

Wallinheimo-Heimonen: I don’t know if it’s motherhood or age. It’s as if I don’t want to play this game if I’m talking about disability issues. I cannot play the beauty ideals game where the beauty belongs only to people with perfect health or perfect looks. I don’t know how it happened or what happened to me. I was accepting of myself, maybe, but that sounds so cliché. I just realized that nothing bad happens if you do your grocery shopping just as you are in the morning. I just decided that I can do it, because as a person with a disability I have done even worse things, if I think about the medical procedures and all these kinds of really ugly things. Why do we think that it’s ugly to wash away our makeup? I was also playing with my own courage. I can do it, and nothing bad happens. Actually, only good things happened. (laughs)

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Fitzgerald: Do you think having a disability made you less inhibited?

Wallinheimo-Heimonen: Kind of, yeah.

Fitzgerald: In the talk, you share that both of your children inherited brittle bone disease and that you were secretly happy about that. Could you elaborate?

Wallinheimo-Heimonen: I was hoping that maybe if we had kids, I would know what to do if they had brittle bones. I know how to read and play and draw and work with computers—all the arts and crafts things. This feels safe to me. And a kid with normal bones feels a bit unsafe. Even if they don’t break bones. This is really difficult to explain, but I was talking with a mother who is blind, as is her husband, and she also said that maybe it would be easier to have a child who is blind rather than one who is fully sighted, because then you would share the same world.

Fitzgerald: That makes sense. It’s the world that you know, so you don’t have to worry about them hurting themselves or doing something dangerous.

Wallinheimo-Heimonen: There are people who’ve asked me, does that mean I want my kids to suffer? But I know that people with OI don’t suffer all the time. It hurts when you get a fracture, of course, but there is good medication. The casts are lighter and more flexible than when I was a kid. Based on all the research, these kids study, live a normal life, and marry and have children. It is not the end of the world. Just three weeks ago my son broke his leg for the first time, and today we went to the children’s clinic in the morning, but they didn’t take the cast off because it hadn’t healed properly. He was disappointed. Okay, so we got some ice cream, and we had quite a good day around the city and all this celebration. I don’t think he’s suffering. He could have a much worse condition than brittle bones. I would think differently if it were something more serious. Brittle bone disease is not. But if you look at the Internet, you might think that this is the most terrible thing in the world, that you break your bones all the time. Yeah, you might, but you still live. (laughs)

Art work. Image left: Small owl adorned with white sequins and tiny white skeleton on top of its head. Image right: Small Matryoshka doll decorated with sequins, beads and two small hands
Fitzgerald: You talked about an “ugly experience” you had with your doctor. You told him that you didn’t want more children, and he suggested that if you wanted another child, he could screen an egg without the genetic mutation. Does this make you nervous about bioethics, the ability to screen out undesirable characteristics?

Wallinheimo-Heimonen: It makes me nervous because, for example, we have fewer and fewer people with Down’s syndrome, which is easy to screen. Also, OI, the most severe types, which are Types III and IV, are almost disappearing because the characteristics are easy to see in an ultrasound. This is really tough. I’m not against prenatal screening, but I think it’s not fair that when doctors find something “abnormal” or not right, they give you a huge list to read about this condition, which is only from a medical viewpoint, and they don’t tell you anything about life with that condition. In Finland, we have this very light pressure to terminate these kinds of pregnancies. I find this very unfair, because I feel brittle bone disease is like a rare plant. I don’t think there is just one type of human being. We should have variations, and why are rare diseases not accepted as just variations, like eye color? Why is it something that we should get rid of? I think it’s important to have people with disabilities, because most able-bodied people will join us later in life, when it’s much more common to become disabled. Those of us born with a disability can give others courage and teach them about our culture. We can be very empowering to help them survive. But I think the world wants it the other way around, in order to save money, that we shouldn’t exist, and that it’s acceptable only if you become disabled later in life. I think the information given to parents is not right. It’s not right that the doctors are telling about disability, because it’s not about a medical problem, it’s about participation and how the society is working, about education, and about financial things. It’s not at all about, “am I breaking a bone or not?” I have to speak a bit about this Finnish system. In many places around the world, in the global South, they think this is a Nordic paradise where everybody is taken care of, because we still have some sort of welfare, which is not at all as good as it used to be when I was a child.

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Fitzgerald: Yes, I’ve read that Finland has a good public healthcare system. But you’re saying it’s not as good as what’s reported?

Wallinheimo-Heimonen: We have benefits for people with disabilities. But you can barely live. You get enough money for food, but you’re going to be poor the rest of your life if you’re only living off these benefits. You get your assistive equipment for free. The healthcare is quite cheap. We have free education. We have all these good things, but it’s all based on this medical view that we have to all of the time report everything about our bodies and apply these services, and then the parliament, the politicians and the social workers decide how we should live, how they can save money so they don’t have to give us individual services. They don’t allow us to choose anything, because then it gets too expensive. So they want to solve this disability issue and decide what is good and what is not for us. This is what I’m fighting against. Of course, I like that it’s not very expensive to be a disabled person who requires treatment, but it is not fair that we’re treated like paper doll cut-outs from real society and given special services that are inflexible with a normal life.

Fitzgerald: Is public transportation one of the big issues for people with disabilities in Finland?

Wallinheimo-Heimonen: It’s still a very big issue in Helsinki. Finland hasn’t ratified the UN Convention. We’ve signed it. But public transportation during the winter is not accessible. The subways are accessible, yes, but there’s still lots of trams and buses where you cannot get on because they’re not accessible. If you need to move around, you only get 18 drives per month, which means nine times somewhere to and fro. If, for example, you go to the grocery store twice a week, then you have only one more per month. If you want to visit a friend or your mother or go to a library, it’s quite difficult to manage. The funny part is, I can drive a car, and I have a car, so I also get the 18 taxi drives per month, but I cannot give them to anyone else because I have a car. So I don’t even need those taxi trips, but we all get things equally.

Image left: Dolls in dresses adorned in ornate flowers, triangles and sequins. Image Center: Gold sculpture of woman with no arms and flowing lace skirt from her hips. Image right: Ornate multi petal flower with jeweled pink center.Fitzgerald: So you’re able to drive?

Wallinheimo-Heimonen: Yes, I drive, because we are not living in Helsinki, so we have to drive.

Fitzgerald: You mentioned the subway is fairly accessible for people with disabilities. How well is that working?

Wallinheimo-Heimonen: It’s working quite well. But I’ve heard from people who are blind that the platforms were not designed with the visually impaired in mind. Also, only a part of buses and trams are accessible. Last week we had a very successful demonstration against our national railway system. Last year they bought 24 new restaurant cabins for long-distance trains, and they initially said that they would be accessible, but they were not at all. There is one accessible door, but there is a handrail that you can’t get past in an electric wheelchair. Simple changes such as the removal of this one handrail would help, but after a year of negotiations, the national railways still refuses to make the change. So we arranged to have a demonstration, and it was really funny. We had only seven people who tried to travel in a restaurant cabin from Helsinki to Tampere, which is only 150 kilometers away, but we couldn’t even get in. We were told that the only accessible door to the restaurant was closed because “it had some creaking sound,” and the staff refused to make exceptions or even try to let us in. We were told that we were allowed to use only the wheelchair seats instead of going into the restaurant because “people must be able to move around in a restaurant cabin.” The national railway imagines that they’ve solved the accessibility problem with a special permit, allowing the train staff to take food and alcoholic drinks to wheelchair seats in the train. As if we want to eat and drink alone in another cabin! This proposal shows their inability to see us as members of the community, friends, co-workers or family who want to eat and drink together with their traveling partners. We’ve been negotiating with the national railways about this handrail for one year. This is how I spend my free time. It’s crazy, but it’s so much fun.

Fitzgerald: So you have demonstrations often to spotlight issues?

Wallinheimo-Heimonen: Well, we don’t have them very often, but I like to participate when we have disability issues. Sometimes we have 20 to 50 people involved, like we did for our so-called “high-heel” demonstration, where we were marching so that Finland would ratify the Istanbul convention (to prevent and combat violence against women and domestic violence) and make shelters for women who are abused more accessible. We dressed in high heels or tied them to our clothes, chairs, crutches or wore them as jewelry. The ratification process got stuck again, but after the demonstration three more shelters improved accessibility. So now we have six accessible shelters for women who are abused in Finland, but none are in Helsinki, which is the capital.

Fitzgerald: A high-heel march—what a great concept. Do the demonstrations typically get media coverage?

Wallinheimo-Heimonen: It depends, usually not as much as last week. The train issue did because the law changed on the first of January of this year, saying that we should be able to get into every public place like everyone else. That’s why we got the attention, and because they made a mistake by not letting us in. If they’d let us in, probably we wouldn’t have received any media attention, because seven people traveling is not news. But because we were kicked off, it was. When I talk to them about this issue, most people say “Who wants to go to a restaurant cabin? That food is not good. Why can’t you eat in your own seats? You can ask the people working in the train to bring you a drink in the wheelchair seat.” We were fighting against this because we don’t want to sit in the wheelchair seats. We want to go to the restaurant with our friends and colleagues and families to enjoy ourselves like everyone else. But most people said they didn’t understand why. “What is the problem?” This is the situation here, because these are First World problems. We are not beaten. The state is treating us like—how could I say? We’re treated like stereotypical paper dolls; I don’t know how what else to call it.

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Fitzgerald: It’s a deeper issue, what you’re after. It’s normalizing people with disability.

Wallinheimo-Heimonen: Full inclusion. This is the problem. These people don’t understand inclusion, because they think that the problem is “us”, that we have some pathological things in our bodies, and that’s why it’s kind of a law of nature. “You can’t get everything because you can’t walk”, or “you can’t get everything because you can’t see, so it’s not our problem, it’s your problem”.

Fitzgerald: Which makes your work all the more important. I wanted to find out more about your focus on domestically abused women with disabilities experience, which I’ve read is globally two to four times higher than for women without disabilities. What is Finland doing about it?

Wallinheimo-Heimonen: Yes, we brought up this topic in 2013 when the women’s working group in the Finnish Association of People with Mobility Disabilities thought about violence towards women with disabilities. It’s considered a taboo subject. People think that we are protected against abuse, which is absolutely not true. According to Canadian researchers, the number is two to four times more likely. We have done only one research study in Finland, and I think only about 25 women participated, and it was done by a university, and they found that it’s 10 times more likely in Finland. Finland is one of the leading countries in domestic violence. We have lots of the European Union and other committees that have given Finland feedback that it’s not doing enough to protect women against domestic violence. So it’s a big issue here, but Finland is not actively doing anything about it. I think it’s about the darkness, the alcohol and other terrible things. I want to bring this out in the open, because when I’m talking with people, they always think that this doesn’t affect women with disabilities. They don’t see us as women. They don’t consider that someone would hurt a disabled person. That sounds crazy. We have a brand-new women’s hotline that opened. The line is open Monday through Friday, from 4-8 pm and on the weekends from 12-4 pm. We still have a lot to do here.

Fitzgerald: Many of the issues you’ve talked about are critically important social issues. Have you ever thought about going into politics?

Wallinheimo-Heimonen: (laughs) No, no, no. I’m an artist. The problem is that if I were to go into politics, I wouldn’t be able to tell a story about a specific disabled woman’s experiences in a subjective, emotional and critical way. I would be just talking this political talk. As an artist, I can go to their side, and I can tell stories, which doesn’t matter in the world of big politics, but does really matter to many people with disabilities, and I can get people to listen. I can get the stories out of real people.

Fitzgerald: Yes, there’s tremendous power in storytelling.

Wallinheimo-Heimonen: I have to hide the names sometimes, and I’m combining several women’s stories together—they don’t want to be identified. This is a small country. But no, never do I want to be in politics!

Fitzgerald: I understand. Can you talk about your art process and what inspires you? I know you have a studio.

Wallinheimo-Heimonen: I have a funny process. There are always times when I don’t work on my art and instead work in disability associations for a few months, because I get the best inspirations when we are sitting around the coffee table and I’m witnessing the current issues. What’s happening in disability advocacy right now? What is it about? I have this funny waking up in the middle of the night when I see weird things, so I write them down. Nowadays, I’m interviewing and videotaping people about their art pieces. In the beginning, I was writing their stories myself, but now I’m asking more and more people to speak in their own words.

Fitzgerald: And they’re all people with disabilities?

Wallinheimo-Heimonen: Yes, people with disabilities. I think that disability art has to be done by a disabled person. It should tell about our life stories. The thing is that now, with two kids, I usually wake up quite early, and we have time with my husband. But usually I’m sneaking out before my kids wake up, so then he takes the morning shift, gets them dressed and takes them to kindergarten and day care, and then I stop work around 2:00 or 3:00 in the afternoon, so the kids only have, like five or six hours in school or daycare. And then my husband works late in the evening. So I become a full-time mother, usually, in the afternoons.

Fitzgerald: It sounds like you have a nice balance between home and work.

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Wallinheimo-Heimonen: Yes. But I have to thank my husband. It’s just that we have different natural rhythms. I’m a morning person, and he can write till 2:00 am. I think I get my best ideas around 5:00 or 6:00 am. This year we have been extremely lucky. Finnish people typically don’t like to talk about themselves, but I think I’m the first artist in Finland who’s won a four-year grant for making political disability art. This is quite amazing, because I can spend time at home with the kids, who are just two and five. Right now, in 2015, I get a monthly salary to spend time with my friends who are disabled, planning their stories, going to demonstrations, making videotapes, and publishing. I think it’s quite amazing, because the money is coming from the same state that I’m criticizing. But there have been artists with disabilities getting money in Finland, and I think for the first time the government really wants to support this type of art.

Fitzgerald: I want to ask you about your work with the Threshold Association, a human rights organization for people with disabilities. You mentioned that they did drawings of models with disabilities. Did you pose, draw or do both? And what was that like?

Wallinheimo-Heimonen: I did both. In the beginning it was kind of my idea that we should try live drawings of models with disabilities. I was working at the Threshold as a designer, and we have a volunteer who gives accessible art courses. We were talking that they should really do this, because we need more images of disabled people. Unfortunately, our first brave model passed away a few years ago. I drew her a few times, but I was also working, so I couldn’t attend the course all the time. Then, when I was seven months pregnant with my son, we decided to offer the course at the CrossOver Festival, where most of the participants were without disabilities. We had a model booked, but she canceled at the last minute. We were in shock. What should we do? We had even advertised saying, “Now you can come here to draw a disabled body.” (laughs) People were staring at me as if to say, “It’s your fault, so get undressed.” And then I decided ok, I’m pregnant; I can hide behind my huge, pregnant stomach. So I posed. I’d studied life drawing in college, so I knew exactly what it was about. But I hadn’t been on the other side before. It was empowering when, after 5 or 10 minutes, I forgot that people were staring at my body. It was fun. I’m not an exhibitionist; in fact, I’m very shy. I thought it would be just a once in a lifetime experience and nobody would ever know about it, but a local newspaper came by and shot a photo. A few days later, my husband’s relatives called and asked what his wife was doing. (laughs)

Fitzgerald: Oh, how funny! But it sounds like it was therapeutic and rather self-affirming.

Wallinheimo-Heimonen: Yeah. I was also thinking that it strengthened my body image. Most of us have been visiting doctors and physical therapists that often stare at our bodies, criticize and measure them. I won’t say that all women with disabilities have a negative body image, but many women say they feel very uncomfortable. It varies. Some people think it’s very uncomfortable to undress, and some people stop caring; they feel like their body is not connected to their mind or true self, so when they have to show their body to doctors, they hide inside their mind, and they don’t even feel their bodies, so they’re not present in that moment. So I was thinking that maybe for some women it’s easier to pose as a model, because they have this trait. I do feel my body in that situation.

Fitzgerald: You’re passionate about assistive technology. You’ve said that international conventions on human rights will never remove the low status of people with disabilities as revolutionarily as top design. What’s your vision for how equipment of the future should look?

Wallinheimo-Heimonen: Have you seen Viktoria Modesta’s music videos, and the posing she’s done with her prostheses? She has some high-tech prostheses with crystals and music and all kinds of amazing features that can make non-disabled young girls envious of having such great legs to wear. I’m waiting for the day when disability enables you to have better features than other people. If we get assistive tools that help us do something better than a normal body part, it will raise interest in disability. We will become inspirational. For example, a person with prosthetic legs may be able to run through flames and save another person from a burning building, or maybe people with impaired hearing might have hearing aids with simultaneous translation capabilities. I could speak Finnish, and your hearing aid would translate everything for you.

Fitzgerald: Oh, I want one! That actually sounds like something everyone could use. It’s futuristic, but I wouldn’t be surprised if it’s in the works.

Wallinheimo-Heimonen: Yes, these are still futuristic, but maybe in the future, we can have this kind of assistive equipment that makes us superheroes. Maybe soon our clothes will measure vital functions, send messages, protect against cold weather, etc. These things exist, but so far smart textiles and integrated computers are used more in art or in space clothing or for athletic wear. They are not yet available, at least not in Finland. You cannot get this kind of equipment from the state. I have a passion for searching for these innovations around the world on the Internet, but I don´t know how to get them here. It’s a good thing that assistive equipment is free for us in Finland, but it has led to a situation in which we are left behind in terms of equipment development because municipalities and hospital districts don´t want to spend money on us. Equipment has to be cheap here because we don’t pay for it ourselves. So there are no markets here.

Fitzgerald: Have you found companies that are doing anything close to these futuristic designs or, say, making incredibly beautiful ergonomic wheelchairs, for example?

Wallinheimo-Heimonen: There are so many. I don’t have my list here. There’s a lot of Japanese innovation, but I don’t speak Japanese. They are working on electric wheelchairs, for example, and there are even more modern ones that you can adorn with lights and music, and they can talk to each other. Sophie de Oliveira Barata is one of my favorites. I think she’s now the top prostheses maker. She makes them for people with disabilities or just for art. If you cannot wear prosthesis, then you can buy one and hang it on the wall. I think that’s quite amazing when we’re talking about assistive equipment, that it can be an art piece. I also think that 3D printing will change the field a lot. I’m really hopeful for that in Finland, because if we get free wheelchairs and crutches, maybe we can get 3D printers and create something personal and powerful. I think this possibility is very close.

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Fitzgerald: So it would be like wearing a prosthetic leg that you’ve designed; it’s a part of who you are and says something about your identity.

Wallinheimo-Heimonen: Yes, exactly. That is so important, that you could show who you are, and your ideology. Nowadays, you just have to accept what is given to you. You cannot just say, “I’m a green person. I want my wheelchair or crutches to be from recycled materials.” You can’t even say you don’t want to have plastic or a certain material because it’s against your beliefs. You just have to take what’s available. Or even the personalization that you should have something for women, something for men. OK, they always tell me that there are pink wheelchairs, but I don’t need a pink wheelchair. I need, for example, a wheelchair designed for a mother. It’s different. It’s not about color. It’s about how you carry the kid there, or how you push your trolley, or where you put your groceries or is there a place for the bottle?

Fitzgerald: Yes, you need equipment that’s tailored to your specific needs. So what’s next for you?

Wallinheimo-Heimonen: I’m super busy. My next exhibition will be in March with a disability poet, Sanni Purhonen, at the Klaukkala Library’s Gallery Toivo. It’s about violence against women with disabilities, and it’s called “A Calf at a Glass Cabinet and Dependent Relationships.” It’s like a seven-course meal flavored with ignorance of gender, economic abuse, otherness in family services and refused assistance, mixed with tastes of physical, emotional and sexual abuse. After that, I’ll be preparing for summer performances with a group of students with disabilities.

Fitzgerald: Sounds very interesting! You were a pleasure to speak with.

Wallinheimo-Heimonen: Thank you for saying it was a pleasure. I’m honored.

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