By Jacinthe Dion
Szeretlek Magy. Cette phrase, qui se traduit à “j’aime la Hongrie,” fait partie des dix mots que j’ai appris de la langue hongroise depuis mon arrivée à Budapest au début de mai. Depuis mon arrivée, la ville me pousse à me poser pleins de questions : pourquoi de la crème sûre sur tout? Comment peut-il y avoir au tant de sortes de paprika? La goulash, le salami, le kürtőskalács, pogácsa, ce n’est pas pour rien qu’on dit que la Hongrie est une “capitale de bouffe.” Je me pose pleins de questions aussi sur l’histoire complexe de ce pays et sur leur culture de bains thermiques.
Parmi tous ces questionnements se trouve un autre genre de réflexion, une plutôt contraire à ce que je viens de mentionner, qui se fait dans un petit bureau sur la rue Hercegprímás au centre de la ville. De l’extérieur, la bâtisse reflète l’architecture riche de cette ville, juste à quelques pas de la fameuse Szent István Bazilika. De l’extérieur, personne ne pourrait imaginer ce qui se passe à l’intérieur, au troisième étage de cet édifice. Nul part n’est-il annoncé qu’une petite équipe passionnée au Mental Disability Advocacy Centre (MDAC) travaille ardument pour les droits des personnes ayant une déficience intellectuelle ou psychosociale.
The work that is done at MDAC cannot be summed up simply. This NGO currently has around 50 pending cases in 7 different countries. It is very interesting for me to cooperate in a different kind of activism for the rights of people with intellectual or psychosocial disabilities. I usually work directly with children with mental disabilities: teaching them swimming, playing games, or attending to medical appointments with them, all in the context of different organizations with which I am involved at home. However, what I do here at MDAC is different. MDAC uses law as a means of change; as a way to make a difference in the lives of people with mental disabilities.
Generally speaking, the way this is done can be summed up in two words: proactive law. Law serves more purpose than the set of rules it outlines for our society; it has the power to promote or limit equality, justice, and fairness. Having laws in place is not the end point, but only the starting point. How can people know about these laws if they are not promoted? How can they be implemented if nobody sees to their enforcement? How can they be respected if no one is given the tools to apply them and ensure they are being respected? It is necessary to proactively work to create an environment in which everyone has the same chances to live a prosperous life. That is what I feel I am a part of this summer. What I do might be little in the big picture, but every single case that MDAC advocates is contributing to provide this prosperous environment for people with intellectual or psychosocial disabilities. But it is very difficult.
Every day, I read atrocities. Every week, I am responsible for producing a newsletter that reports all the recent relevant jurisprudence and news items that are relevant to our work. I read and I summarise. I read about children being placed in institutions when they are not even a year old. I read about teens confined in solitary wards and I read about people being confined in institutions against their will. Then, I read further about these individuals in institutions that are also having their rights infringed. I read, I read, I read and every day, as I cringe a little more, I become less surprised by the treatment people with mental disabilities are receiving, as it is so frequent. Is this how people become blind to atrocities, by setting standards based on what the norm has become? It is horrifying how our brain works, how it captures information, and how it remembers things. People’s stories become cases and cases become application numbers; people’s belongings become confiscated and they become evidence for trial; personal memories become testimonies and can then be used against you; similar cases are regrouped together and statistics are created. These processes are long, tedious, challenging, and exhausting and it is hard to conceive sometimes that all this started with a story, somebody’s horrible story.
When I read, I replace the word ‘applicant’ with a name, where there are pictures, I capture faces, I think of cases as stories; I do everything I can to make everything as human as possible and less bureaucratic. Although that makes the read harder, it also makes it more real. These are people’s lives I am reading about and it is very easy to lose sight of that when you are working in an office 9:00 to 5:00 every day. I want to make sure with the case summaries I do, the research I conduct, the newsletters I create, and the meetings I take part in that I don’t lose my human touch with the work I do.
En fait, j’ai récemment réalisé à quel point j’étais influencée par mes lectures et mon travail. Je suis allée au cinéma avec une autre stagiaire de MDAC. Nous voulions aller voir un film léger après une longue journée de travail. Malheureusement, le film que nous voulions voir n’était qu’en Hongrois. Nous avons donc opté pour une version anglophone du film Me Before You. Pour ceux qui n’ont pas encore vu ce film, je vous avertis que je pourrais vous gâcher la fin. En quelques lignes, ce film parle d’un tétraplégique qui souhaite mettre fin à ses jours. Dans ses derniers six mois de vie, sa mère engage une jeune femme pour lui tenir compagnie et bien sûr, ces deux derniers deviennent amoureux. En surface, ce film est peut-être qu’une histoire d’amour et une leçon sur le soutien inconditionnel d’un être un cher. À la fin, l’homme décide tout de même de mettre fin à sa vie afin d’arrêter de souffrir. Certes, pour moi ce film crée tout d’abord une énorme controverse pour les gens en situation d’handicap.
At first, I was enraged. How could a movie so bluntly send a message that people with disabilities should consider suicide? No one’s suicide should be viewed as noble and inspirational, which is what I felt the movie was conveying. By doing such, it devalues the lives of people with disabilities whereas the message should really be that their lives are as precious as anyone else’s. I felt like romanticism was influencing our notion of human rights, rights MDAC fights to protect. However, while processing this information, I recalled a sentence that was said by a character in the movie that bothered me. Unsure of the exact words, I decided to retrieve the quote from the book the movie was based on: “[p]eople who are vulnerable should not be given the chance to do something that they’ll…”. Those words reflect the idea that other people should take decisions for people with disabilities, suggesting they lack the judgment to take decisions for themselves. However, the young woman who is in love with him understands the importance of giving him his choice and allowing him to decide for himself: “I’d sleep at night because I trust [him] to know what is right for him, and because what has been the worst thing for him has been losing the ability to make a single decision, to do a single thing for himself.” Then what is the right thing to do in this case? Do you let him take his own decision or not? 
I do not have a right answer to these difficult questions. I just realized then, when walking out of the movie, how much perspective my work at MDAC has brought me. One of the questions I was asked when applying for this internship inquired on what I hoped to take away from this experience. My answer could be summarised with my aspiration to broaden my knowledge and expertise in the field of human rights. Prior to this internship, seeing this movie would have rather left me mesmerized with the love story. In my application for this internship, I wrote “to best understand human rights, we cannot look only at an individual problem, within one social context, through the eyes of one legal tradition, but rather by looking at the bigger picture.” I acknowledged that often I failed to do that and I had hoped to reverse that this summer, and I think I just did.
