By Lisa Schmidt
Imagine you want to learn a new language. You are sitting in a class of 20 people, but you cannot hear the teacher, and it is really difficult for you to cancel out the background noise. You might want to compensate and try to lipread, but you quickly realize that you are not yet used to the way the teacher articulates themselves. “That is something that can be easily overcome!” you think to yourself. “I just need to match what they say to how they speak.” But how can you know what they say? You don’t even speak the language yet.
This scenario is the reality for Lisa Dondainas, a 20-year-old French sciences major in her second year at Amsterdam University College (AUC). Dondainas lost a significant part of her hearing in her childhood. This was mainly caused by a genetic predisposition and surgery. Despite working together with her teachers, tutor, and language coordination, she has still not found a solution to successfully fulfil her language requirement. Her multiple requests for an exemption from this language requirement have also been denied by the Board of Examiners (BoE). In fact, it’s not the first time in her life that she faces obstacles regarding the lack of accommodation for deafness. She is once again taking measures into her own hands to now create the Disability Handbook, something she wishes existed already more frequently, not only at AUC. This project, thus, reflects her strength and perseverance.
According to Dondainas, AUC expects students to be really proactive in communicating their needs and arranging solutions which at times can be hard when also managing a disability. The Disability Handbook will aim to provide an overview and explanation of different disabilities combined with testimonials by students which focus on their own lived experiences. Dondainas stresses that no one experiences the same disability in the same manner, and that it is thus important to also include diverse voices speaking on the same disability. The handbook will also provide suggestions and references for the type of accommodation previous people with that disability were able to receive. “In that sense, the Disability Handbook helps students to be that proactive but with some backup help,” Dondainas adds.
Dondainas first posted about this project in AUC’s Facebook group in September. While the ongoing process with the BoE does affect her mental health, mainly because of its duration and uncertainty, she emphasizes that there is no single clear motivator but an accumulation of experiences that drive her to go on. Dondainas has always had the desire to educate people, even before this project. Nonetheless, by making it her community project, which has been approved in December, she can also profit from the AUC framework. “Being at AUC gives me the whole opportunity to actually make it make a difference,” she states.
Initially, Dondainas planned to create the handbook beside her studies but quickly noticed that it would take up too many of her own resources. This is also in connection to the current online classes and increasing screen time. She briefly mentioned that being confronted with her own trauma, which originates from the discrimination and disrespect she has faced due to her disability, can be quite challenging, but that she is really eager to work on the handbook. “I really want to do it and I am going to do it!” she says. Dondainas is known for her ambitious attitude. “She is a studious and dedicated person. She wants whatever is representing her to be to her standard,” says her close friend and second year AUC student Sophie Duncan as she reflects on Dondainas’s clear vision of her social image and her own expectations. “I’m a little worried that it might not necessarily become what she imagines it to be. She has a very set perspective on things.” Nonetheless, Duncan also expresses how proud she feels of Dondainas for making the Disability Handbook happen. Indeed, the project has been receiving many positive responses. “This is amazing !!!,” one comment reads on Dondainas’s first Facebook post regarding the project.
“When I was growing up, I never had that one person outside my family to tell me everything is going to be okay.”
“I learned about disability the hard way,” Dondainas responds to the question where she takes her strong attitude from. “When I was growing up, I never had that one person outside my family to tell me everything is going to be okay.” She elaborates that she has always had to fight for the things she needs. Early in life she realized that for her there are two ways to go about this. Either she lets the struggles control her or she takes control of the situation herself. “I’d rather be my own controller,” she says. However, Dondainas is not always this sober realist. She really enjoys the feelgood movie “Everybody Wants Some” and will giddily share her love for it with anyone who asks her about it. “There’s no way she’s not going to make you watch it,” Duncan makes clear.
Although Dondainas already has to deal with additional stress factors next to navigating university life, she is willing to invest even more time on the topic of disability. “Once I’ll look back at my AUC time, I’d rather see me trying to make a difference about it,” she says. Nonetheless, she feels angry and frustrated. Always having to be prepared to deal with unexpected factors, doing BoE requests, and always reaching out to teachers, is a burden which, according to Dondainas, “keeps you from actually spending time on your learning and student experience.”
26-year-old Suzanne Salari shares a similar perspective. She is a student at the University of Amsterdam (UvA) and, at time of the interview, chairperson of the Student Disability Platform. The Student Disability Platform is in contact with students, the UvA’s policy makers and other faculties to advise on creating a more accessible environment for studying with a disability. Salari voices that, on top of the usual study stress, people with disabilities are confronted with non-inclusive, often prejudiced environments, lack of guidance and guarantees when it comes to academic accommodations, and the lack of accessibility in student associations. Working closely with the policymakers at the UvA, Salari voices the concern that if they want to change UvA’s bad reputation regarding disability, which is the reason why the platform was first created in 2016, they need a culture change that addresses the core issues. “You can change certain symptoms, but you won’t change the main structural problems,” she says, positioning this as the manifestation of a wider societal problem.That is, people with disabilities or differently-able bodies find themselves in a world (and educational institution) that is structured for able-bodied people. Although there are certain changes to facilitate navigating that fundamental lack of accessibility, those changes do not fully provide an inclusive and diversely accessible society. Thus, structures that favour able-bodied people continue to be enforced.
“I don’t hear anywhere. I am not only deaf at AUC in the academic building.”
Salari adds that there definitely is the need for Dondaina’s handbook, something that comes from and brings attention to individual experiences. In fact, although Dondainas is using AUC as a platform to create the handbook, she does not view it as limited to it. “I don’t hear anywhere. I am not only deaf at AUC in the academic building,” Dondainas explains the universal value which the handbook offers. “Some of those accommodations could also be implemented at my high school and at other universities.”
“AUC is not the most adapted environment,” said Dasha Protsenko from the AUC Peer Support when talking about what appears to be a rather slow process of remodelling the AUC culture to account for certain recurring struggles that AUC students face. Among those struggles are loneliness and exclusion, extreme stress, and study induced depression.
Another issue, according to Protsenko, is the divide between Dutch and international students when it comes to awareness of possible resources. Peer Support is currently working on mental health guides and is, as part of the AUC Wellbeing-Team, collaborating with the AUC Student Council (AUCSC) to create documents with resources specifically catered towards international students. Both Peer Support and AUCSC appreciate Dondainas’s initiative and plan on promoting the Disability Handbook once it is finished and complies with their values. “It would surprise me if the end product is something we couldn’t endorse as the student council,” says Laura Aker, the Student Affairs Officer of AUCSC.
When asked what Dondainas would like others to take from reading about her project, she says that “this is a chance to be heard,” which according to her experience, does not happen very often. To people who do not have a disability, she would like to emphasize that “you can never be too aware of these things,” referring to other people’s different experiences of navigating the same environments. She encourages them to “go and have a look.”
Dondainas’s perspective on life itself, especially her take on loneliness, is very intriguing. Her sister Zoé mentioned her change in attitude coming back from her exchange year in Australia in 2018. “She accepted it. She owns her disability now,” Zoé said. According to Dondainas, Australia provided the place to take time for herself and get to know herself. From this she concludes: “I’m a pretty great person, so it’s worth it to be me all the time.” The pleasure of spending time on her own took influence on, for example, her weekly Friday French Dinner alone. “I’m not worried whether others enjoy it as well, I just need to worry about myself.” Dondainas particularly enjoys her taste in good French wine.
“When you’re deaf, it’s important to even more appreciate being lonely happily.”
She expresses that she views loneliness as part of her disability. “I don’t have a community, I hear better than completely deaf people, I don’t hear as much as completely hearing people,” she says when explaining that she often experienced herself hoping to be part of a conversation as she was able to ‘grasp’ some parts, but ultimately always was confronted with that not truly working out. This enhanced her feeling of loneliness. So instead, she changed her perspective, saying that, “What drove me to wanting to appreciate loneliness is that I was going to be alone anyway.” She criticizes that we are often taught that loneliness equals sadness. To escape this, she shifted her focus to appreciate everything that she can do by herself. “When you’re deaf, it’s important to even more appreciate being lonely happily. Australia gave me the time to figure this out.”
Many things in her life deal with disability involuntarily. Other things are dedicated to the topic of deafness with intriguing attention to preference. “She doesn’t define [disability] as an essential part of her personality, but it’s definitely an essential part of her art and expression,” Duncan says when commenting on her appreciation and love for Dondainas’s art.
Indeed, The Disability Handbook is not the only project Dondainas has received praise for. Her Instagram comics account called @the_larsen_effect has recently been written about in a newsletter by the French company Le Messageur, which featured Dondainas and eight other changemakers who provide information on experiencing deafness. Dondainas’s first post from November 2019 covers a misunderstanding she had with a fellow student on her way to ‘buy food’ ‘by foot’.
Dondainas named the comics after the audio feedback called ‘Larsen Effect’. She explains that deafness is a disability that happens when in contact with others. “I consider myself not disabled when I’m in my room,” she says. “Most of the time when I’m on my own I don’t have a reminder that I’m deaf.” Except for when it comes to the Larsen Effect, which she experiences when her hearing aid is covered by, for example, her pillow as she lies down on her bed. She calls this confrontation “exhausting”. Dondainas chose the name because she wants her comics to function as a reminder that even those who look like they have ‘nothing’, might in fact have something that makes them experience life differently. She hopes that her comics help people to be “careful and considerate.”
When filtering out what qualifies as ‘comic material’ from her lived experiences, Dondainas pays attention to two different factors. One is that it provides an anecdote to the reader, the other factor that she asks herself whether she has accepted the situation or not. This process allows her to look at situations in a new positive light. “[The comics] let me see the irony in it instead of crying over it,” Dondainas explained. “If I can’t accept it, I can’t make it funny.”
Explaining the vision for her comics, she says, “I make the comics funny because I think that spreading love and joy has much more impact.” To Dondainas it is important that the deaf people who follow her know that dealing with disability-related, and more specifically, deafness-related conflicts gets better. She criticizes the general representation of disability in media, especially when it comes to the portrayal of suicide in movies. According to her, portraying death as the solution to disability, “the thing that’s going to relieve so much pain, pressure, and stress,” makes it appear as if the person with a disability does not have any other choice, as if death is the only escape. “How do you think that makes people who have that disability feel?”, she asks.
Just one example, the movie adaptation “Me Before You”, starring Emilia Clarke and Sam Claflin who play Lou and Will, has been widely criticized for its disability rhetoric. The Guardian article “‘I’m not a thing to be pitied’: the disability backlash against Me Before You” from 2016 elaborates on the harmful consequences for people with disabilities but also for the image of disability itself. The article reflects on the question asking for whom these movies are created. Citing @JohnBrianKelly’s tweet “I have Will’s disability. Stop killing me on film! #liveboldly, fight cripple snuff films” the article brings the opinions of people with disability into perspective. According to Dondainas, using the frame of suicide in order to escape disability, and even worse in combination with a “happy” ending, is redundant. To her, it is important to change the way disability is portrayed, “to offer other suggestions on how disability can ‘end’,” which is what she tries to achieve through the comics.
Elaborating on why Dondainas calls herself a “success story”, she states that it does not occur regularly that a deaf person is speaking two languages, living abroad for at least 2 years before turning 20 years old, and studying online in English during the Corona pandemic. But she also emphasizes that it takes quite some obstacles to overcome in order to reach that point, but that it is still possible after all. “What I would say to my younger self is that it hurts but that you’re going to be such a good person when you grow up,” she reveals. She feels that undoing everything that happened would also change the person who she is today, which would not be to her liking. “I’m amazing now. I love myself now,” she states. With everything that she is doing, Dondainas wants to show others a more realistic take on disability which talks about the lows and the highs. “It’s very important for those people who are struggling to have diverse role models,” she says, reflecting on her vision.
This is an article made in collaboration with AUC’s Journalism course of 2020-2021.