What We Take for Granted…

By Leila Alfaro

The beautiful Andes, somewhere south of Mendoza

July 22nd, 2019

This is my last week in Mar del Plata. The last month has been tough for my family and me, as we have struggled with maintaining our Argentinian routine, so different from our regular one, and have been feeling homesick, missing our family and friends. I am very excited to head back home, but I am also very thankful for my time here, for the encounters I have had, the things I have learned, the places I have visited and the memories I have made. As the weeks progressed, I often had to fight the disconcerting thought that my presence here would ultimately prove to be useless and that in the end, I would realize just how little I had accomplished this summer.  I partly blame this on the slow pace of life here but these fears, certainly, were also anchored on the notion of just how complex issues pertaining to disability rights are, and that there is no single way of tackling them without eventually uncovering further underlying issues of a more complex nature. Exploring the field of disability rights, namely in a country with a fragile economy, proved to be beyond frustrating at times. A cloud of helplessness and desolation was hanging constantly over my head, as I had to come to terms with the extent to which ableism is embedded in the structures of society and just how limited the impact of rights and laws on paper can be, when there is simply so much that has to change in order to guarantee a dignified life for members of such marginalized group.

While I had no experience whatsoever in the field, especially in the Argentinian context, I found myself learning so much, so quickly. By learning from the situation in this foreign country, I inevitably felt the urge to find out more about the reality back in Canada. One of the most interesting moments in the context of the workshops with people with disabilities was when I was able to present a brief overview of how Canada approaches voting rights for people with disabilities. By communicating the reality of my country, I was able to share interesting links, like how the issue of an aging population has an incidence on the existing efforts of accommodation.

Curiously, when I elaborated on how there is still much to accomplish in Canada as well, I was met with what felt like skepticism. Argentinians certainly hold Canada in high regard, since they see our institutions as well-funded, efficient and “serious”. The irony is not lost in me, that as much as they admire said efficiency, they do not seem interested in a more rapidly-paced lifestyle. Indeed, such tradeoffs are inevitable, and we are not always in a position to be adequately critical of them given our own biases and perspectives which are ultimately limited by our personal realities.

Being abroad, I have mostly been able to reflect on the things I take for granted (like the people who are part of my daily life, the comfort of my home or some of my favourite foods!), but I have also learned about what people here take for granted. As I have become interested in the topic of voting rights for people with disabilities, I have begun working on a research project of my own. As I debated on which topic to present to the Centre for approval, I ultimately felt the strong urge to address the mandatory aspect of Argentinian suffrage. I found it fascinating how the people with whom I interacted could be so comfortable communicating their own frustrations regarding their system yet seemed very willing to justify it when I would question factors such as mandatory voting. I was surprised to find that virtually no literature exists on the subject in relation to disability (I was told there had been some kind of project done in another university that tackled this issue, but I have yet to learn more about it). I quickly became under the impression that, while Argentinians do recognize the particularity of their voting system in this regard (mandatory voting), they are quite satisfied with it. When it comes to discussing and promoting the ability to vote, basically no attention was brought to how the principle of mandatory voting might also impact persons with disabilities. This notion exemplifies the degree of ableism in society in terms of what the State expects from its citizens, seemingly ignoring the existing gap between those who have impairments and those who do not have any.

While I was pleased to hear that my research project relied on a novel outlook of the situation, I expect to gain more insight on the underlying ambiguities of mandatory voting, especially given the historical context of the Argentinian political scene. In elaborating on this topic, I hope to encourage other researchers and clinical workers to become more sensible to how the obstacles people with disabilities face are linked to more complex structural factors of society that we tend to take for granted.

My going-away dinner with members of the Extension Group on Voting Rights for PWD, comprised of graduate students and faculty from multiple fields

 

The last workshop in which I participated, especially tailored for people with visual impairments

Time, Suffrage and Disability

By Leila Alfaro

If I had to choose one aspect for which I am most grateful when travelling, it would be the resilience I am forced to develop as I find myself in new, challenging situations. Beyond my love for visiting new sights, tasting different foods and meeting new people, I appreciate being challenged when facing cultural aspects so different from my own to the point I must undertake a process of deep introspection, contemplating the Other as well as my own reflexes and the things and practices I take for granted. Since arriving to Argentina, I have had plenty of time to experience and, most importantly, to reflect on not only the cultural, but also the geographical, infrastructural and economic gaps between this side of the pole and home, up in the North.

Having had the privilege of knowing Mexico and most of Central America, I knew coming here that I should brace myself for an experience in which time could not be measured the same way as back home. It amazes me that, even with everything I know and have lived, I am still surprised seeing how time can move so slowly here. Through meetings postponed, messages unanswered, workshops cancelled, last-minute schedule changes and strikes, my patience has been tested on several occasions. However, as I learn to expect the unexpected, I grow more comfortable with this kind of difference, knowing I am being confronted to my biggest flaw (impatience) and that at the same time I have the opportunity to build on some very valuable skills, namely autonomy, resourcefulness and, of course, resilience.

While I recognize the slow tempo of the city has kept me from achieving the most of this experience work-wise, I also recognize the good it entails – I appreciate this stress-free lifestyle, which is a nice break from the North American way. I also admire the role of family in Argentina, the importance of making time for those around us and for self-care. More time on my hands also means I can enjoy more walks on the beach and more delicious parillas with my family. It also allows me to be more critical about the experience itself; whenever a situation arises, I can truly take a moment and reflect on the why and the implications of whatever is happening for the Argentinian people and for me as a visitor (strikes related to the weakened economy, classes cancelled due to bad weather affecting infrastructure, unavailability of certain goods are some examples of circumstances which I have faced during my time here).

Work may be slow here, but it still happens. I have had the chance to join an interdisciplinary, graduate clinical group working on promoting voting rights for people with disabilities. So far, this has taken the shape of workshops in schools and community centers for individuals with disabilities, lectures aimed at undergraduate students and inter-faculty discussions. I take this work very seriously as it has taught me a great deal about political perspectives and disability rights in the region. In any democracy, we can reasonably expect people with disabilities to have more difficulty enforcing their right to vote without proper accommodations provided by the State – but, what happens when voting is also a duty? In Argentina, an absence to the polls must be justified in order to avoid sanctions; this certainly entails a new set of complex challenges for anyone, and for citizens with disabilities in particular. Because of the unique nature of suffrage in Argentina, addressing it in light of issues of diversity and inclusivity is of utmost importance. I appreciate this opportunity especially given the precarious situation in the country in the context of the upcoming elections this fall.

As the last half of my internship begins, I am starting to feel a bit homesick, but I look forward to new learnings and to continue discovering what this country has to offer (I am excited to visit Mendoza and Buenos Aires this upcoming week!), and in the end I know it will have seemed like it all happened in the blink of an eye.

Defining Equality: Namibia’s Supreme Court and the Rights of Persons with Disabilities

By Kevin Lee Pinkoski

Equality in Namibia and the Rights of Persons with Disabilities:

A young country – with a new constitution – needs an active judiciary that takes every opportunity to develop a more nuanced understanding of its constitutional principles. This is the context of Namibia, a country that, in 1990, won independence from South Africa after years of racial division implemented by apartheid, and, in the same year, adopted a new constitution. But many terms in this new constitution have yet to be comprehensively nuanced and defined through jurisprudence. As the case Alfred Mew Visser v Minister of Finance & 3 Others shows, Namibia’s judiciary continues to miss opportunities to describe both the nuances of equality as the term is present in the constitution and its relationship to the rights of persons with disability.

The nuance that is lacking from Namibian jurisprudence on equality is if the term is only limited to formal equality, where the law treats all individuals equally, or if it includes substantive equality, where the law recognizes individual differences in order to make everyone equal. Namibia’s constitution prioritizes equality, yet Namibia’s Supreme Court has failed to provide an accurate explanation of what is meant by the term in the constitution — if it is limited to just formal equality, or if it can be expanded to substantive equality. The judiciary must play an active role in addressing these ambiguities. Consequently, disabled individuals in Namibia are left without true equality.

Alfred Mew Visser v Minister of Finance & 3 Others:

The Alfred Mew Visser case is about the rights of persons with disabilities. Alfred Visser was in a severe car accident and, as a result of his injuries, he was blinded in both his eyes. Because of Namibia’s no fault insurance scheme, he was awarded damages according to The Motor Vehicles Accident FundThe Fund sets caps for damages, and Alfred Visser challenged these caps under the claim that they do not adequately provide the financial support necessary for him to live with a permanent disability. The Supreme Court did not find the case in his favour because of the financial implications of going beyond the caps established in The Fund.

Alfred Mew Visser characterizes a clear problem in the Namibian judiciary; the term equality in the Namibian constitution has not been accurately defined by Namibian jurisprudence. Yet the Supreme Court’s response inAlfred Mew Visser, ignorant of this problem, focuses only on the financial limitations of The Motor Vehicles Accident Fund. My criticism is that, regardless of the outcome of the case, the Supreme Court needs to actively seek out opportunities to elaborate and clarify Namibia’s constitutional principles. Because of this, the Supreme Court’s judgment in Alfred Mew Visser is a missed opportunity to provide a nuanced understanding of what is meant by equality – this is detrimental to Namibia’s most vulnerable populations.

Equality in the Namibian Constitution:

Strong memories of the heroes of the liberation struggle, such as Toivo ya Toivo, continue to inspire Namibians like Fazilla to fight for equality.

Reflective of years of apartheid – when inequality between race was implemented by law – Namibia’s new constitution prioritizes equality for all its citizens. The preamble to the constitution sets this mandate, affirming that “the inherent dignity and of the equal and inalienable rights of all members of the human family is indispensable for freedom, justice and peace.” Namibia, as a new country, founded itself on the principle of equality.

Namibia’s standard of equal rights for all is expanded upon in Art. 8: Human Dignity and Art. 10: Equality and Freedom from Discrimination of the Constitution. Art.8(1) states: “The dignity of all persons shall be inviolable”, and Art. 8(2)(a) elaborates: “In any judicial proceedings… before any organ of the State… respect for human dignity shall be guaranteed.” Art.10(1) reads: “All persons shall be equal before the law,” and Art.10(2) continues: “No persons may be discriminated against on grounds of sex, race, colour, ethnic origin, religion, creed or social or social status.”

The constitution and current government policy indicate an ambiguity between formal and substantive equality in Namibia. While Art. 10(1) establishes the terms of formal equality before the law, Art. 10(2) creates the potential to use the law to make all individuals equal through substantive equality.  Art 10(2) indicates the potential for substantive equality as it would be discrimination not to make individuals equal who suffer under the prohibited grounds for discrimination in Art 10(2). The emphasis on equality in both the preamble of the constitution and in Art. 8 show Namibia’s prioritization of equality for anyone within Namibia’s borders. Furthermore, Namibia has embarked on clear projects to create substantive equality for marginalized populations, such as economic empowerment initiatives and gender equality programs. There is a clear ambiguity in what is meant by equality that must be addressed by Namibia’s Supreme Court.

Neither Art. 8 nor Art. 10 provide a nuanced understanding of what is meant by equality. Because of this, Namibia’s lower courts have been limited to an understanding of equality that only evaluates the formal equality of all individuals before the law, not the substantive equality necessary to make all individuals equal. Furthermore, as Alfred Mew Visser shows, the Supreme Court has failed to take any opportunity to define any nuances to what is meant by equality as it is presented in the Namibian constitution. Because of this, Namibia has yet to create an environment of true equality for persons with disabilities.

Disability in Namibia and Alfred Mew Visser:

Although empty on the weekend, the Katatura Disability Plaza houses numerous organizations that promote equality for people with disabilities.

Namibian law defines disability as “a physical, mental or sensory impairment that alone, or in combination with social or environmental barriers, affects the ability of the person concerned to take part in education, vocational, or recreational activities.” This definition is elaborated upon to include the “loss or limitation of opportunities to take part in the normal life of the community on equal level with others due to physical or social barriers.”

The Namibian constitution does not list disability as a prohibited ground for discrimination in Art. 10(2). Thus, for disability to be adequately recognized or discussed in terms of equality, the Namibian judiciary must establish that disability is included under the prohibited grounds for discrimination in Art. 10(2).

Disability has a clear consequence on an individual’s ability to participate in society, it has a detrimental effect on the following grounds prohibited by Art. 10(2) of the constitution: social status, economic opportunity, and personal prosperity. The statistics are clear: 17.7% of urban disable persons do not attend school, 82.3% of rural disabled persons do not attend school, 42.5% of disabled persons work in agriculture and fishers, with 14.6% in elementary occupations. 70% of disabled persons live in homes without a mortgage. The reality is explicit – being disabled in Namibia is a limit on the potential of an individual to achieve success and prosperity.

In the example of Alfred Mew Visser, Alfred Visser has suffered a permanent disability because of the accident: he is blind in both eyes; he has a physical impairment that will impede his potential to participate in everyday activities and in work opportunities; he will need to learn a new system of reading. He is likely to be to be limited, as Art 10(2) of the constitution explains, to a “social status” because of his disability.

Art. 8 and Art. 10 of the Namibian constitution ensure a conducive environment to the full and equal participation for all in society, including those with disabilities. But, as was previously alluded to, because neither Art. 8 nor Art. 10 provide a comprehensive definition of what is implied by equality, the Supreme Court is required to give such an interpretation. The Alfred Mew Visser case is a clear example of a missed opportunity to give a more nuanced explanation of what is meant by equality, a missed opportunity that will be detrimental to disabled people – one of Namibia’s most vulnerable populations.

Formal Equality – Equality as applied by the Supreme Court:

Namibia’s clear wealth disparity, apparent in the village of Hoachana, is continually being addressed in the pursuit of equality.

Namibian jurisprudence has yet to provide a nuanced understanding of what is meant by equality in the Namibian constitution. The problem is that, because of the limited wording of the Namibian constitution, there is no need for courts to expand beyond an understanding of equality that is restricted to formal equality. Formal equality is established only by equality before the law. It applies blind rules to every situation, no matter what social differences may be involved. If the Namibian constitution ensures only formal equality, the Namibian Supreme Court should define that distinction. While it is possible to develop the language of formal equality in Alfred Mew Visser, it is important to recognize that the case turns on the financial limitations of The Motor Vehicle Accidents Fund, and not the issue of equality.

In Alfred Mew Visser, the court employs a view of formal equality before the law, as all claimants are held to the same limits of compensation, regardless of either their individual characteristics or the consequences of an accident. Alfred Visser’s disability can only be taken into account provided it falls under the limits of the caps established in The Motor Vehicle Accidents Fund, and it cannot be adjusted to take into account the particular needs of certain claims. The caps employ the same legal equality to all — the same formal equality before the law — and thus the court can resolve that “No distinction is made between claimants at all” since “all claimants are in the same position when it comes to the capping of their claims and are thus equal before the law.” No differentiation is made between individuals and their needs. If this is what is meant by equality in the Namibian constitution, the Supreme Court should define equality in this way in its decision.

Formal equality could, however, provide the means to address the necessary compensation required to ensure equality for disabled individuals. Since, to establish formal equality, the court adheres to “equality before the law,” it is the actual law itself that would have to change. The Motor Vehicle Accidents Fund would have to be amended to provide for a recalculation of damages for disability, for injuries that cannot be recovered from and that requires an individual to live their life in a different way. In this way, the court could still employ formal equality before the law, but the law itself would have to be expanded to provide for the necessary compensation to an individual who has been affected to a new “social status” (as Art. 10(2) of the constitution establishes) as a result of an accident. The Namibian constitution could imply formal equality in this way, but the distinction would have to be made by the Supreme Court.

The Potential for Substantive Equality in Namibia:

The Katatura Hospital is one of many public hospitals that provides medical services to Namibians.

In Alfred Mew Visser, substantive equality would imply that, because Visser has been placed in a different social status as a result of the disability incurred in the accident, the court could employ a definition of equality that allows for increased compensation. While the court establishes that The Motor Vehicle Fund ensures that “equally positioned persons are treated equally”, it fails to consider that some individuals will require more support in order to be treated equally. The reality is, as substantive equality reminds us, that the results of an accident do not leave all individuals “equal”, and that some, especially those with long term disabilities, will require more compensation. If the court had chosen to establish substantive equality as a part of the Constitution’s definition of equality, the court would allow for the law to be adapted to Alfred Visser’s specific case.

Furthermore, the court would establish the necessary precedent to employ substantive equality when necessary to ensure that the law can be adapted to provide what is needed for any individual to achieve equality. This is the missed opportunity of the Supreme Court, they failed to recognize the reality that equality before the law does not ensure that the law has equal effects on all individuals. Consequently, in order for the law to allow that all individuals can achieve equality as a result of the law, a substantive understanding of equality should be employed. Here, the Supreme Court has failed to provide for a more nuanced, and more just, understanding of equality that takes into account an individual’s unique needs. Alfred Mew Visser is thus a missed opportunity to define equality.

Conclusion:

Namibians, especially Namibia’s most vulnerable population, must again wait for the Supreme Court to develop a nuanced understanding of equality. Namibians are left with ambiguity as to if equality goes beyond formal equality to address substantive equality, thus allowing for the prohibitions on discrimination in Art. 10(2) to be extended to unlisted ground. It is, as Art. 10(1) reminds us, that “all persons shall be equal before the law” – so why stop short of protecting Namibia’s vulnerable populations?

The Supreme Court should be capable of providing the necessary jurisprudence to clarify and develop the constitution. The Supreme Court cannot be limited by state resources or policy in its decisions, it must be capable of balancing these limitations with the necessity of equality. The nuances in the term equality have yet to be defined by Namibia’s Supreme Court, and the Court continues to miss opportunities to add the necessary nuances. Defining these nuances is, after all, the role of the judiciary.

 

Broadening my Perspectives

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Me and my first kürtőskalács

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.

Right before entering MDAC for the first time

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.

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United Nations Peace One Day at American International School of Budapest, where I was a panelist for student presentations and representing MDAC

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.

13599620_994527830642381_1396374541_nAt 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?  13639425_10210133754285059_157356367_o

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.

 

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Fellow interns and I in the Buda hills during our Staff Away Day

Asile A et B

2014-Navarrete-InakiIñaki Navarrete

Je pris une profonde inspiration avant d’entrer dans l’arrière-cour de l’asile B. C’était le second établissement que nous visitions ce jour-là. Des patients assommés par la chaleur et les psychotropes gisaient à moitié nus dans leurs excréments au centre d’un cercle formé par d’autres patients. Un garçon de mon âge touchait son membre d’un air absent.

L’asile B était pire que l’asile A.

L’asile A, visité en matinée, en était un réservé aux femmes de tout âge. S’il prêtait largement flanc à la critique, il avait au moins le mérite d’être relativement propre : les murs n’étaient pas couverts de zut, le sol n’était pas couvert de fluides, et on pouvait y marcher sans avoir à se boucher le nez. L’affaire était tout autre ici.

Disability Rights International, l’organisme avec lequel je travaille cet été, effectue régulièrement des visites dans les hôpitaux psychiatriques locaux afin de documenter les conditions inhumaines et dégradantes dans lesquelles vivent les personnes handicapées. Lors de ces visites – toujours guidées –, la stratégie est simple. Certains suivent le guide tandis que d’autres trainent le pas à l’arrière pour voir ce qu’on ne veut manifestement pas qu’on voit.

Après un moment à l’arrière, je m’éclipsais donc dans une chambre isolée. Un jeune homme, appelons-le Victor, s’y trouvait, complètement nu et emmitouflé dans un nuage de draps sales d’où dépassaient des bras convulsifs. Notre guide, le directeur-neurologue, me rattrapa rapidement. C’est à grand renfort de termes techniques qu’il m’expliqua que Victor était un “cas perdu”. Plusieurs psychotropes étaient “nécessaires” pour apaiser son ”trouble”. Bref, Victor était une machine qu’il n’arriverait jamais à réparer.

(Photo de Victor, prise avant l’arrivée du directeur)

En regardant Victor planer dans une sorte d’apathie, sans ressort et aisément influençable, et en pensant à la facilité avec laquelle il avait été laissé à son sort dans cette chambre, je n’aurais su dire si ces psychotropes  étaient “nécessaires” ou s’ils s’inscrivaient plutôt dans un schéma de contrôle visant à faciliter la prise en charge de patients trop nombreux par un personnel trop réduit. Il s’agit d’une pratique courante.

J’insistais pour en savoir plus. Victor est un abandonado. Il fait partie de ce groupe de personnes dont les familles, souvent par manque de moyens, parfois par manque de soutien dans leur communauté, se sont résignées à les abandonner dans un hôpital psychiatrique. Parfois aussi, l’abandon découle de la honte et du stigma attaché au handicap. Victor ne reçoit jamais de visites.

En droit, la conséquence immédiate de cet abandon est la mise en place d’un régime de prise de décisions substitutive. Le directeur devient le tuteur et représentant légal des abandonados, ce qui lui donne un chèque blanc gros comme la lune sur leurs vies. Victor, objet de protection et non sujet de droit. Mais c’est compréhensible:

“Voyez-vous, il est comme un enfant qui ne sait pas ce qui est bon pour lui”.

Ce genre de discours du “meilleur intérêt”, on l’accepte d’autant mieux qu’il peut se justifier d’un côté, par des fonctions de protection et de sécurité, de l’autre, par un statut technique et scientifique.  Mais il ne faut pas se méprendre. Le meilleur intérêt dérape souvent. C’est pourquoi le paradigme social du handicap, présent dans la nouvelle Convention relative aux droits des personnes handicapées, demande que l’on congédie ce discours médical dépassé, ces régimes de prise de décisions substitutive ainsi que toute forme d’internement. Il faut plutôt laisser place à l’autonomie des personnes handicapées. Victor, comme sujet de droit.

Dans cette optique, l’asile A et l’asile B sont tous deux condamnables pour leur seule existence. Cela dit, comprendre ce changement de paradigme n’est pas toujours simple et on peut se demander : qu’est-ce que cela signifie concrètement pour ce jeune homme complètement nu et emmitouflé dans un nuage de draps sales? Une comparaison entre l’asile A et l’asile B rendra la chose plus claire.

Avec la question du travail.

Les femmes de l’asile A sont invitées à suivre plusieurs modèles de carrière. Elles peuvent fabriquer des vêtements, des jouets ou cuisiner des plats. Ce qu’elles font avec leur argent ne regarde qu’elles. En m’offrant des biscuits, l’une d’elles m’expliqua dans un Anglais impeccable qu’avec son salaire elle aimait aller au restaurant chaque vendredi. Je souriais. Les biscuits étaient bons. Sur l’emballage, l’inscription “Le travail rend digne”.

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(À l’heure du dîner, cette femme est restée étendue sans recevoir aucune aide)

Et les patients de l’asile B? Regardez cette dame dans la photo. Au mieux, certains participent aux corvées quotidiennes en échange de “cadeaux”, comme des petits gâteaux. Mais l’autonomie et la dignité ne se nourissent pas de petits gâteaux.

Au pire, les patients de l’asile B se trouvent dans un isolement sensoriel dégradant.  La télé, une thérapie musicale une fois par mois ainsi que des sorties sporadiques dans le jardin (plutôt une cage avec des barbelés) résument l’essentiel des activités disponibles. Alors, ils déambulent. D’autres sont attachés à leurs fauteuils roulants toute la journée. Depuis combien de temps? 60 ans. J’imagine que c’est aussi dans leur “meilleur intérêt”.

Faut-il insister plus encore sur la différence entre A et B?

Je voulais visiter ces établissements pour savoir pourquoi je travaille avec DRI. Aujourd’hui, la raison est on ne peut plus claire. Avec ses yeux bleus sévères et son sourire bienveillant de Big Brother, le directeur aux tempes grisonnantes de l’asile B restera pour moi le visage de l’institution totale.

How not to have your case thrown out by the Inter-American Commission

2013 Emily Hazlett 100x150Emily Hazlett

Imagine a hospital where the patients sleep on the floor or on dirty old mattress. Instead of getting adequate treatment for their illnesses, they run a high risk of contracting HIV and other infectious diseases. Patients are placed in segregation or restrained, their arms tied to the sides of wheelchairs. Physical and sexual abuse are rampant. There is no clean water and not enough to eat. Day after day women are kept locked inside their ward to protect them from being assaulted. Most of the patients could leave, but given a lack of services in the community, they have nowhere else to go.

These are the conditions at Federico Mora Psychiatric Hospital in Guatemala City. I’ve spent most of the last 3 months with Disability Rights International working on preparing the case of Federico Mora to be heard at the Inter-American Commission of Human Rights. In preparing the case, the biggest challenge we face is meeting the Commission’s admissibility requirements.

In all three regional human rights systems (American, European and African), applicants are required to show they they’ve exhausted the domestic remedies of their home country before the Court will hear their case. The rationale for the rule is essentially political. Regional human rights systems are subsidiary to state courts; the exhaustion rule allows national authorities the opportunity to respond to human rights violations at home before being condemned at the international level.

There are however exceptions to the exhaustion rule (or agotamiento de recursos domesticos, as I’ve slowly been learning to say). Unfortunately, finding jurisprudence to support the exception rule has proven difficult, since the Commission’s reasoning is always a very specific mix of the applicant’s circumstances, domestic law from across Latin America, and varying attempts at adequate and effective legal recourse. On top of that, the Inter-American system has issued very few decisions relating to disability, meaning they’ve yet to consider the uneven relationship between the necessity of exhausting legal remedies and the lack of legal capacity faced by many people with mental disabilities. The European Court recently ruled on the issue, leading the strange jurisprudential experience of a tiny group of Mexican lawyers being thrilled to learn of the failures of Bulgaria’s legal system.

In the case of Federico Mora we allege violations of rights to life, integrity, equality, liberty, legal capacity, fair hearing, judicial protection, social life, mobility, private life and health (imagine a Charter challenge with alleged violations of 12 separate sections of the Charter). In the Inter-American system, 70% of cases don’t meet the admissibility requirements because the applicant has failed to exhaust domestic remedies. And so our biggest challenge (beyond preparing arguments regarding 12 separate articles of the American Convention on Human Rights), is showing that Guatemala offers no possibility of recourse to patients unjustifiably detained in inhumane conditions.

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