Author: convergencejournal

Allison Jones

 

Introduction

As part of a larger project exploring homeschooling and educational anthropology, I conducted six semi-structured interviews with seven homeschooling parents in Montreal (five individuals and one couple) to learn more about their practice of homeschooling and the ideals behind it. Considering the small size of my sample, I do not claim to make any broad conclusions about homeschooling in Montreal or elsewhere. Nonetheless, these interviews highlighted a number of interesting themes, and raised a number of questions for potential future exploration, both of which will be outlined below.

Recruitment

I recruited participants for the interviews through a local homeschooling centre, Centre Communidée, both online and in person. I have been involved in Centre Communidée for the past 8 months, which provided me with a strong understanding of the organization and a sense of its community before I began my interviews. My research has been significantly influenced by my involvement at the centre and my relationships with people there; it is hard to consider my reflections on the centre ‘neutral’, but neither do I intend to unabashedly advocate my own interests. Thus, I hope that through examining the interviews I conducted in conjunction with previous literature on homeschooling, my analysis will provide the reader with insight into this small homeschooling community and the lives of some of its members.

My interviewees were recruited through Centre Communidée’s website and networks, and therefore my interviewees tended to have perspectives similar to those of the centre itself. This description, from the homepage of Centre Communidée’s website, gives a good sense of the mission of the organization. It reads:

Centre Communidée is a non-profit, non-religious, volunteer-run community centre for homelearning families. Membership fees are used to pay for rent, utilities and some supplies. Most activities are organized and run by people from our community, and are included in the membership fees.

All our activities are interest-based and are not designed to meet any educational requirements. As homeschooling families, you and your child are responsible for your child’s education. Communidée’s activities and workshops are offered as a supplement to your homeschooling experience. (“About the centre,” n.d.)

From this description a few key features are noticeable. First, the centre is explicitly ‘non-religious’ and the fact that activities are ‘interest-based’ suggests a pedagogical, child-led approach to homeschooling.1 Second, there is no link between Centre Communidée and the local school board; it is community-based and volunteer-run. Third, we get the sense that activities are more social than educational, and present an important aspect of families’ homeschooling methods.

Interview Findings

In my interviews, I found a relatively high level of consistency with previous homeschooling research in terms of family demographics, reasons for homeschooling, and methods and materials used. There is an abundance of different aspects of my findings that could be explored, but I have chosen to focus on themes from the interviews that have been largely absent from previous research.

The Importance of Reading. An interesting value that all but one parent mentioned was the importance of their children learning to read. I have not been able to find any research that explores homeschoolers and reading, despite the fact it was one of the most common issues that my interviewees brought up. Reading was seen as a way for children to take more control over their own learning and explore new topics. One parent summed it up as, “I thought if he can learn to read, then he can read about the other stuff.” This did not mean that all parents wanted their children to read at a young age (although some also expressed this sentiment), and two parents said that although their children had started reading later than they might have in school they did not see this as a problem. Nonetheless, reading was an underlying concern, and for many a ‘bottom line’ of what they wanted to teach their children.

Involvement in Centre Communidée. There has been little academic work written about homeschooling collectives, organizations, and centres. As my research grew from my involvement in Centre Communidée, I was curious about the role of this space in families’ lives. Four of the parents I interviewed were currently participating in activities at the centre, one had participated in the past, and one was hoping to do so soon. Parents identified two main reasons for participating in the centre. First, their children were involved in activities there, and enjoyed participating in them. Second, the centre was a space where parents provided each other with mutual support, both emotionally and practically. (For example, parents might babysit or teach each other’s children).

Diversity and Similarity at Centre Communidée. I asked the parents currently involved in Centre Communidée to comment on the diversity of the families that use the centre. One parent, who has been involved at the centre for a number of years, described:

In the sort of bigger picture of all the families that have come to the centre, if I sort of line all those people up, I would definitely find a fair amount of diversity. I mean, we have had religious families, we’ve had, you know, different races coming, different ethnic backgrounds, different philosophies of education, you know, all of that.

Despite the fact that the centre attracts a diverse group for one-off visits, it seems that the people who stay involved are fairly similar. While visiting and participating in the centre’s activities, the majority of those involved who I met were white, middle to upper-class, two-parent families in which the mother stayed at home and the father worked. The families usually take a child-led approach to homeschooling, and are often unschoolers.2 They also tend to share political beliefs, as one parent described:

I would say if you were going to look at it from a political point, most people would be fairly, more or less on the same page in terms of what they believe in. Like, what they believe the kids should eat, in terms of people’s rights, people’s, you know, they’re very more or less on the same page, supportive of women’s rights, gay rights. I assume that most of the people, I could be wrong, will more or less be together on that.

Different homeschooling approaches at times caused tensions or made other parents uneasy, though; as one parent said, “there’s some I respect enormously for what they seem to be achieving with their kids, and other ones it’s like they’re not involved.”

Attending School in Future. When asked whether they thought their children would attend school in the future, there was a marked difference between those who had been homeschooling for a longer or shorter amount of time. The five parents who had been homeschooling the longest tended responded along similar lines to this parent: “[We’re] not opposed to [our children going to school], but I would say probably more at the university or the CEGEP level rather than before.” Almost all parents indicated at least some interest in having their children attend higher education.

The two parents who had been homeschooling for a shorter time indicated a stronger expectation that their children would return to school sooner rather than later. In both cases, they had removed their children from school due to specific negative experiences and said they would not enroll their children in the same schools again. One expressed a desire for their child to attend an alternative school.

Feelings Towards School. More generally, then, what were the feelings expressed towards school by interviewees? One of the parents who expects their child to return to school in the near future described:

I guess my feeling is that I don’t feel strongly that schools are terrible and wrong and bad and oh-my-goodness. I think there are things that should be changed and should be different, that could be more effective and wonderful and good, but I don’t think that they’re this terrible thing either.

This perspective was fairly typical of those interviewed, who saw schools as having flaws, but also saw those flaws as fixable. Another parent described, “well, homeschooling isn’t perfect, and school isn’t perfect, so you have to weigh the pros and cons, that’s what I’ve discovered.”

Critiques of schools tended to focus on the methods used and on the fact that teachers are very overworked, and therefore have a difficult job to attend to the needs of 25 or 30 students simultaneously. Some parents felt that schools were too rigid in their methods, and not representative of how contemporary society works. For example, “school systems that teach this material, and this curriculum, and this so the kids end up with this, are doing everybody a disservice because society doesn’t work that way any more.”

A common feeling for those parents whose children had attended school in the past was that the schools were slow to respond to specific problems, especially bullying and poor teaching. A number of parents also identified their own school experiences as negative in some aspect, whether simply boring, riddled with poor teachers, or focused on useless material.

Suggestions for Change. Parents made suggestions both about improvements that could be made to schools as well as improvements that could be made to policy regarding homeschooling. A number of parents proposed that school boards should offer support to registered homeschoolers, but recognized such support might come with strings attached. One parent elaborated more on the fears they have about such a program, stating they were against any method that linked a family’s right to homeschool to their children’s performance:

So they say we’re going to evaluate your kid to see if you have the right to homeschool, if your kid doesn’t fare well, you don’t have the right to homeschool him? Like, that is just wrong to me. Because, even though my kids are shining little geniuses who will do just fine in the world, not everybody has such little treasures, you know. And some kids have a hard time learning one thing or another, or are different from, you know.

Other parents advocated more cooperative, grassroots relationships between homeschoolers and schools. For example, one described:

The idea of Communidée is a great idea, it should be standard, it would be really great if there was something tacked on to the existing school system, where they allow them to use the gym, or arts and crafts class…I think homeschooling partnerships with schools would be beneficial to everybody. Because I think the kids that are homeschooled would get a lot out of it, but I also think the school kids would see a different point of view.

Three parents suggested that they would also like to have the option of sending their children to school part-time in order to get basic instruction, and then be able to do activities as a family or outside of the school for the rest of the day. One parent described:

I think that is really the way to do it, to have the discipline of doing two hours of good, intensive schooling, where you can give them all the information they need at their level and probably beyond, and have the rest of the time to do whatever you want. I think that’s the approach I would like to go to.

While this depiction, emphasizing ‘intensive’ schooling, may be more rigorous than some homeschooling families would accept, the idea of not having to go to school full-time, in order to be able to do other things, was shared with others.

Suggestions for changes that could be made to the current system were described in all interviews. Parents clearly identified what was working for them about homeschooling, what they missed from schools, and what they imagined could cater to families’ diverse needs. Despite these ideas, though, only one seemed involved in homeschooling organizations that were making concrete demands of the government in order to help such changes materialize.

Implications of Findings

Overall, my interview findings were consistent with previous research on homeschooling. My interviewees fit the demographic portrait of Canadian homeschoolers put forth by previous authors (Ray, 1994; Smith, 1993; and Van Pelt, 2003). Research that has shown the tendency for change in homeschooling families over time, in methods, materials, and philosophies (such as the work of Arai, 2000; Chapman & O’Donoghue, 2000; and Van Galen, 1988), seems very applicable to this group of families, who generally focused on flexibility and practicality in their homeschool practice. Interviewees also fit the portrait of Quebecois homeschoolers given by Brabant, Bourdon, and Jutras (2005), which highlighted family-centred practices and ideals and a high level of animosity towards school boards and homeschooling registration.

There were a few topics that I found came up frequently in my interviews that are not discussed in other homeschooling research and would make interesting future topics of inquiry.

First, the increasing presence of homeschooling centres and the ways in which they act similarly and dissimilarly to schools in the lives of homeschoolers has largely been unexplored. While Centre Communidée serves more pedagogical homeschoolers, authors have also noticed a trend in the US for religious homeschoolers to create charter schools (particularly in California) in order to use state resources to purchase curriculum and support their homeschooling practice (Hill, 2000). What do homeschooling families find different about homeschooling centres and charter schools from the mainstream school system that makes them interested in being involved in the former, but not the later? Why might some homeschooling families not want to be involved in these homeschooling community groups either? How does diversity, in demographics as well as values, affect families’ participation in homeschooling centres?

Second, the sole skill that almost all families mentioned they want their children to learn is reading. Of course, reading is a very common skill in Canada, and one that is incredibly useful in many ways, but so are other many other skills (cooking, using technology, conversing, and problem-solving come to mind). Why then, was reading highlighted so prominently?

Third, many interviewees suggested that although they doubt their children will ever attend school, they do expect their children may want to attend university. How does university differ from other forms of schooling? Why is that more attractive for homeschooling parents?
Fourth, these parents articulated clear desires for a changed and improved state response to homeschooling. How might these desires be addressed in systemic reform of the education system in Canada? How can a better balance be found between state interests and family practices? Do homeschooling parents think about how the absence of their children from school may impact institutions of public education?

The research I conducted was not targeted enough at a specific issue, nor was it conducted with sufficient interviewees, in order to draw new conclusions about these realms of homeschooling. It does, however, indicate areas where existing literature does not account for the diverse and personal experiences of different families.

Conclusion

Much research has been done on homeschooling in the past fifty years as it has fluctuated between being a counter-cultural practice of leftists and hippies, a rejection of secular schools by religious fundamentalists, and a last-choice for parents whose children suffer rather than flourish in a traditional classroom. Previous research has tended to focus on why parents homeschool, what homeschooling families do all day long, and what are the demographics of homeschoolers. In this project, my interviews allowed me to explore the breadth of homeschooling, looking both at these areas as well as themes that have been unexplored so far. Those that I have summarized present avenues to be explored in future, which may tell us not only about homeschooling but also about schools, community, and larger values in our society. They are therefore important in terms of building a broader understanding of the role of education in our lives, and adapting ourselves to the variations in how that education may occur.

 

1 In a model proposed by Van Galen (1988), homeschooling families or groups are often referred to as either ‘pedagogical’ or ‘ideological’. Ideologues are religiously motivated homeschoolers, whose main critique of the school system is the ideological content of the curriculum (see for example Moore & Moore, 1979; Moore & Moore, 1981). On the other hand, pedagogues believe that schools are incompetent at teaching, and have a strong respect for the creativity and independence of children. They choose to homeschool in order to nurture this creativity and independence in a freer environment (see Holt, 1964, 1981, 1989; Neill, 1960). This model has been challenged by a number of other authors for being over-simplistic (see for example Arai, 2000), but nonetheless captures an important and basic divide in the homeschooling community.

2 Unschooling, in its most extreme form, is a version of homeschooling in which children have absolute autonomy and authority over their own lives, do what they want when they want, determine their own interests and schedules, and are free from any parental constraints on their behaviour or education. In a more moderate form, it refers to homeschooling in which children do self-directed learning, but parents may have a say in other aspects of their lives. This second form of unschooling was more represented in those homeschoolers I interviewed.

 

 

References

About the centre. (n.d.) Retrieved April 24, 2013, from
http://montrealhomelearners.ca/
communidee/

Arai, A. B. (2000). Reasons for home schooling in Canada. Canadian Journal of Education, 25(3), 204-217.

Brabant, C., Bourdon, S., & Jutras, F. (2005). Home education in Quebec: Family first. Evaluation and Research in Education, 18(3), 112.

Chapman, A., & O’Donoghue, T. A. (2000). Home Schooling: An emerging research agenda. Education Research And Perspectives, 27, 19-36.

Hill, P. T. (2000). Home schooling and the future of public education. Peabody Journal of Education, 75(1-2), 20-31.

Holt, J. C. (1964). How children fail. New York, NY: Pitman.

Holt, J. C. (1981). Teach your own: A hopeful path for education. New York, NY: Delacorte Press.

Holt, J. C. (1989). Learning all the time. Reading, MA: Addison-Wesley.

Miller, R. (2002). Free schools, free people: Education and democracy after the 1960s. Albany, NY: State University of New York Press.
Moore, R. S., & Moore, D. N. (1979). School can wait. Provo, UT: Brigham Young University Press.

Moore, R. S., & Moore, D. N. (1981). Home grown kids: A practical handbook for teaching your children at home. Waco, TX: Word Books.

Neill, A. S. (1960). Summerhill: A radical approach to child rearing. New York, NY: Hart Publishing Company.

Ray, B. D. (1994). A nationwide study of home education in Canada: Family characteristics, student achievement, and other topics. Salem, OR: National Home Education Institute, Western Baptist College.

Smith, S. D. (1993). Parent-generated home study in Canada: The national outlook 1993. New Brunswick: Francombe Place/Research Associates.

Van Galen, J. A. (1988). Ideology, curriculum, and pedagogy in home education. Education and Urban Society, 21(1), 52-68.

Van Pelt, D. (2003). Home education in Canada: A report on the Pan-Canadian study on home education 2003. Medicine Hat, AB: Canadian Centre for Home Education.

mickael chacha enriquez, billy hébert, line chamberland et jean dumas

(((Mickael Chacha Enriquez est étudiant-chercheur engagé, allié à la cause trans, qui rédige actuellement son mémoire de maîtrise sur la militance trans au Québec (UQAM). Il est adjoint de recherche à la Chaire de recherche sur l’homophobie, où il coordonne un projet de recherche-intervention auprès des aîné-es trans en partenariat avec l’Association des Transsexuels et Transsexuelles du Québec.

Billy Hébert est chargé de projet au sein de l’initiative SIRA – Aîné-es Trans, un projet québécois de recherche et d’intervention sur les besoins et expériences des personnes transsexuelles et transgenres de 50 et plus dans les milieux de la santé et des services sociaux. Il a obtenu une Maîtrise en Anthropologie sociale et culturelle à l’Université Concordia de Montréal au printemps 2012. Étant intéressé à concilier recherche académique et militantisme, il se considère comme un chercheur « engagé » qui désire participer à des projets ayant pour but de contribuer à l’empowerment des groupes marginalisés.

Militante de longue date et sociologue de formation, Line Chamberland a réalisé plusieurs études sur les discriminations envers les minorités sexuelles dans divers contextes de vie : écoles, milieu de travail, services sociaux et de santé. On lui doit aussi un grand nombre de publications sur l’histoire du lesbianisme au Québec ainsi qu’en études gaies et lesbiennes. Depuis novembre 2011, elle est titulaire de la Chaire de recherche sur l’homophobie de l’UQAM, laquelle veut établir des ponts entre les milieux institutionnels, communautaires et scientifiques afin de lutter plus efficacement contre l’homophobie, la lesbophobie, la biphobie et la transphobie.

Jean Dumas est titulaire d’un doctorat en communication à l’UQAM. À partir de 2007, il a travaillé comme adjoint de recherche dans l’équipe Sexualités et genres: vulnérabilité, résilience de l’UQAM, sur les usages d’Internet liés à la santé parmi les minorités sexuelles LGBT (les personnes lesbiennes, gaies, bisexuelles et transgenres). Il est actuellement stagiaire postdoctoral au CSSS Jeanne-Mance dans le cadre d’un projet visant l’évaluation de l’adéquation des services de sociaux et de santé avec les besoins en matière de santé des minorités sexuelles.)))

Lors de la conférence Étude en Action, 2012 Mickael Chacha Enriquez a présenté le contenu ci-dessous pendant la table ronde  intitulé: Santé,  recherche et ressources  transgenre.

J’ai décidé de présenter un survol de deux recherches trans menées actuellement à l’Université du Québec à Montréal (UQAM): l’une sur les aîné-es trans, l’autre sur les usages d’Internet pour des informations en santé. Ainsi, je ne vais pas aller en profondeur, je me contenterai de partager avec vous quelques éléments de ces recherches, afin de montrer en quoi elles sont utiles aux communautés trans. Cela me permettra de montrer l’importance d’inclure des personnes et organismes trans dans ces recherches.

I. les aîné-es trans
Le premier projet a pour but d’améliorer les conditions de vie des aîné-es trans. Il est issu d’un partenariat entre l’Aide aux Transsexuels du Québec (ATQ) et la Chaire de recherche sur l’homophobie (UQAM), et est subventionné par le ministère de la Famille et des Aînés. Le projet est constitué d’un an de recherche et d’un an d’intervention. Il s’agit de la première recherche de cette envergure sur les aîné-es trans au Canada.

Ce projet part des préoccupations de cette première génération d’aîné-es trans, qui partagent de nombreuses craintes face au vieillissement, comme nous l’ont rapporté les différents organismes impliqués (ATQ, Astt(e)Q et Iris-Estrie). Ces organismes apportent une aide très importante pour la recherche, notamment lors du recrutement des participant-es. En effet, beaucoup d’aîné-es trans ne fréquentent plus ces organismes ou vivent en dehors des grands centres urbains. Sans le soutien de plusieurs membres de ces organismes, nous n’aurions pas pu avoir un échantillon si diversifié. Nous avons interrogé 12 aîné-es trans, dont la moitié vivent en dehors des grands centre urbains. Par ailleurs, deux hommes trans ont été interrogés, ainsi que deux femmes d’origine latino-américaines.

Un autre défi de la recherche de terrain était de créer un cadre de confiance avec les personnes trans rencontrées. Plusieurs ont fait leur transition dans les années 1970, 1980 ou 1990. Ayant connu une marginalisation sociale autrement plus forte qu’aujourd’hui, beaucoup sont habituées à filtrer ce qu’elles disent par crainte du jugement des autres. On s’est rendu compte que quand l’intervieweur disait qu’il était trans lui aussi, les langues se déliaient beaucoup plus, car un lien de confiance avait été créé ou s’était aussitôt établi.

Ces deux éléments montrent à quel point il est important que la recherche trans soit menée en partenariat avec des organismes trans et que des personnes trans soient inclues dans les équipes de recherche.

Puisque lors de la présentation nous n’avions pas encore commencé les analyses, la section suivante donne quelques résultats préliminaires de la recherche de terrain.

1. refus de traitement et impact sur la confiance des patient-es trans plus âgé-es envers les professionnel-les de la santé.
Lolita, 58 ans, a débuté sa transition (le processus émotionnel et/ou physique lors duquel une personne se perçoit et est perçue comme changeant d’identité de genre, et qui peut inclure des aspects sociaux et médicaux, comme par exemple le changement de nom, la prise d’hormones et certaines chirurgies) il y a plus d’une quinzaine d’années et vit « stealth » (sans parler de son passé de transition) depuis un bon moment. Elle a eu une vaginoplastie (chirurgie dite de « réassignation sexuelle ») il y déjà plusieurs années, mais n’a pris des hormones qu’au tout début de sa transition. Elle lie cet arrêt au refus d’un endocrinologue de continuer à lui prescrire des hormones parce qu’elle est fumeuse, bien que les risques y étant associés sont selon elle négligeables. Cette expérience, dans ses mots, l’a fait « décrocher du système de santé ». Malgré cela, après quelques années, elle est retournée voir un médecin afin d’avoir un suivi médical. Cette professionnelle de la santé lui a offert de faire une cytologie, un examen gynécologique consistant en une analyse des cellules du col de l’utérus. Lolita raconte l’échange qui a suivi cette demande du médecin : « J’ai dit : “Je suis une femme trans”. Elle m’a dit : “Moi, je traite pas ça!” » Lolita a donc eu un refus de traitement. Elle est récemment entrée en contact avec d’autres personnes trans, afin d’avoir un meilleur réseau de soutien et les coordonnées de professionnel-les sensibilisé-es.

2. relation positive établie avec un-e professionnel-le de la santé
Pierre, un homme trans de 59 ans dont la transition médicale a aussi été entamée il y a de nombreuses années, avait un médecin traitant qui a pris sa retraite. Il s’est alors tourné vers le médecin de famille de sa conjointe, elle aussi trans. Cela fait maintenant 17 ans qu’il voit cette professionnelle de la santé. Il préfère se déplacer à 45 min de son domicile (de la banlieue montréalaise à Verdun), puisqu’il considère ne pas recevoir des soins adéquats dans les services de santé de sa région. Pierre a développé un très bon rapport avec cette professionnelle. Il lui a révélé être un homme trans après quelques visites, alors qu’elle devait lui faire un examen physique général. La réaction de ce médecin a été, selon lui, très professionnelle – elle n’a fait aucune remarque déplacée au sujet de la transidentité de Pierre et n’a pas eu de réaction de surprise ou de curiosité, ce qui a mis ce dernier en confiance. Pierre raconte que son ancien médecin ne lui avait jamais proposé de faire un examen gynécologique, en partie car il n’est lui-même pas à l’aise avec ce type de situation. Pourtant, son nouveau médecin a insisté sur la nécessité d’une telle procédure bien que Pierre niait en avoir besoin – elle lui a rappelé que c’est son rôle en tant que professionnelle de la santé de lui faire passer les tests adéquats. Cet examen s’est finalement très bien passé.

3. quand une professionnel de la santé aide une femme trans à faire sa transition
Julie a 67 ans, elle a entamé sa transition il y a un an, et ce, grâce aux conseils d’une psychologue qu’elle voyait pour des problèmes d’alcoolisme en région. Cette psychologue la soutient beaucoup dans toute sa démarche. Julie vit maintenant à Montréal pour pouvoir « vivre ce qu’elle a à vivre ».

4. les aîné.es trans développent aussi des stratégies
Céline a 59 ans, elle a entamé sa transition il y a plus de 20 ans. Elle a développé une stratégie afin de passer ses examens de la prostate sans être stigmatisée dans la salle d’attente. Elle vient toujours accompagnée d’un ami homme, pouvant ainsi passer pour sa femme. Cela lui permet d’éviter de dévoiler qu’elle est une femme trans lorsqu’on l’appelle dans la salle d’attente – ce type de stratégies peut aussi être employé par les personnes trans dont les papiers d’identification ne reflètent pas leur identité de genre.

Un rapport de recherche exhaustif sera produit dans l’année à venir, soit d’ici au printemps 2013. Grâce à cette recherche, un dépliant, un atelier de sensibilisation et des outils pédagogiques seront également développés. Ils permettront de sensibiliser les intervenant-es de la santé et des services sociaux aux besoins et aux éléments facilitant l’accès des aîné-es trans à leurs services. Il s’agit donc d’un projet qui aidera à améliorer les conditions de vie des aîné-es trans.

II. les usages santé d’Internet parmi les personnes trans au Canada
La seconde recherche utile aux communautés trans est celle sur les usages santé d’Internet par les LGBT (Lesbiennes, Gais, Bis, Trans), dirigée par Joseph Levy du département de sexologie de l’UQAM. Il y a eu un effort d’intégration des personnes trans dans cette recherche, notamment en consultant certaines d’entre elles qui ont donné des conseils quant à la formulation des questions. Je dois préciser qu’aucune recherche n’a été repérée concernant spécifiquement les usages santé trans d’Internet. Au total, 2187 personnes ont répondu au sondage en ligne parmi lesquels 135 personnes ont répondu à la question « quel est votre sexe ou votre identité de genre? » par « une personnes transgenre ou avec une identité de genre non-conforme ».

Je ne suis pas entré dans les chiffres précis lors de la présentation, mais plutôt simplement exposé quelques éléments saillants. En comparant les réponses de ces 135 répondant-es trans aux autres répondant-es cis LGB, on voit que les personnes trans interrogées :

– sont plus nombreuses à rechercher de l’information sur la santé via le Web et le font à une plus grande fréquence;.

– ont tendance à privilégier des outils plus interactifs, comme les forums de discussion, les échanges de courriels avec des professionnel-les de la santé ou des intervenant-es communautaires, les blogues et les sites de réseautage;

– priorisent des thèmes de recherches en lien avec la transition (hormonothérapie, interventions chirurgicales, etc.);

– discutent plus de l’information trouvée avec des personnes de leur entourage, en ligne avec des inconnus ou avec des médecins, d’autres professionnel-les de la santé ou des intervenant-es communautaires;

– ont une satisfaction moins grande par rapport à l’information obtenue, jugée moins facile à trouver, moins sérieuse, moins crédible, moins exacte, moins complète et moins facile à comprendre.

On remarque également que malgré le manque de satisfaction quant à l’information trouvée, celle-ci a un impact similaire à ce qui est observé chez les LGB cis, voire plus élevé : elle a davantage modifié leur façon de penser sur leur identité de genre, leur orientation sexuelle et leurs relations interpersonnelles et sociales. Elle leur a également permis, plus qu’aux personnes cis, de poser de nouvelles questions à leurs professionnel-les de la santé ou d’obtenir une seconde opinion.

Cette recherche montre que les personnes trans sont d’importants utilisateurs de la e-médecine, qui appelle à une reconfiguration du lien entre médecin et patient en leur permettant de constituer leur propre expertise¹.

Un poster est disponible et un article est actuellement en rédaction, avec les détails des données. Cette recherche est utile aux communautés trans, car elle démontre qu’elles ont un grand besoin en ressources d’information concernant la santé trans disponibles sur Internet. Cette recherche va, par exemple, pouvoir servir de point d’appui à un organisme communautaire, afin de rédiger une demande de subvention pour développer un site internet en lien avec des professionnel-les de la santé et des intervenant-es communautaires en santé trans.

III. Conclusion

On remarque ces dernières années un développement important de la recherche trans à l’UQAM. De plus en plus d’étudiant-es s’intéressent à la question et mènent des recherches sur le sujet, et cela risque de continuer à évoluer dans ce sens. Pour terminer, il faut insister sur l’importance d’intégrer des personnes trans au sein des équipes de recherche LGBT et de mettre en place des mécanismes de consultations et de collaboration avec  les organismes trans.

endnote

1. Hardey, M. (2004). « Internet et société : reconfiguration du patient et de la médecine ? », Sciences sociales et santé, vol. 22, no 1, p. 21-43.

astt(e)q

(((ASTT(e)Q  (Action Santé Travesties et Transsexuelles du Québec) aims to promote the health and well-being of trans people through peer support and advocacy, education and outreach, and community empowerment and mobilization. For more information go to http://astteq.org/index.html )))

This is excerpted from ASTT(e)Q’s guidebook, “Self-Referred: A Quebec Trans Health Survival Tool”. The full document will be available online soon at www.santetranshealth.org

A presentation on the content, creation and distribution of the guidebook was presented by Jackson Ezra, current resource
coordinator at ASTT(e)Q, at Study in Action 2012, Montreal

why we made this guide
Trans people often have a hard time navigating health and social services. Everybody deserves to be treated respectfully by their family doctor, nurses, and social workers, and members of trans communities are no different. Furthermore, trans people need jobs, stable housing, and support if and when their rights are disrespected. Trans people also need services that are specific to and respectful of their needs and experiences. Many of us find that community organizations and resources, as well as our friends and communities, can support and care for us in conjunction with more standard health and social services.

Regardless of the stage of transition you are at or plan on taking, finding health and social service professionals you trust and who treat you with dignity can be challenging. There are few resources that are specific to trans realities. Much of the wisdom and information within our communities is only shared informally between individuals.

what is included in this guide
Knowledge is power: the more information you have, the more you’ll be able to advocate for yourself, whether it be against a disrespectful doctor or social worker, uninformed staff at a shelter, discriminatory landlords or employers, or abusive cops. Having access to trans-specific resources and knowledge can even help if you are confronted by rejection from your family or community.

“Self-Referred” was conceived of by trans people from a variety of backgrounds and has information specific to the needs of trans people living in Québec. Because it was created in an urban context, by people living in Montréal, the scope is limited. Many of the resources listed are Montréal based, but resources relevant to rural communities and other cities in Québec have been integrated throughout. Topics include a look at daily struggles in the lives of trans people, hormone therapy, surgery, legal name and sex designation changes, HIV/AIDS, sex-segregated spaces, and legal rights and advocacy tools.

The term ‘trans’ is used throughout the guide. Trans is usually used as a short form for ‘transgender’ and/or ‘transsexual.’ It literally means “crossing to another side.” Someone who presents, lives, and/or identifies as a gender other than the one they were assigned at birth is trans. At the same time, we acknowledge that trans communities have diverse needs, priorities, identities, and ways of talking about themselves. Ultimately, we support the right for people to self-determine and self-identify using whatever words suit them best.

who we are
Self-Referred is an initiative of Action santé travesti(e)s et transsexuel(le)s du Québec (ASTT(e)Q). ASTT(e)Q is a project of CACTUS Montréal and was founded in 1998, largely in response to Montréal’s lack of health care and social services that were sensitive to trans people’s needs. The project grew out of a support group for trans women living with HIV and was informed by a trans community–led needs assessment that aided in determining the shape and direction of ASTT(e)Q. The organization is part of a long and rich history of activism, advocacy, and community organizing for improved access to health care and social services, housing, decent working conditions (particularly for sex workers), HIV prevention, and an overall greater quality of life for trans people in Quebec.

ASTT(e)Q aims to promote the health and well-being of trans people through peer support and advocacy, education and outreach, and community empowerment and mobilization. We understand the health of trans people and our communities to be related to economic and social inequalities that have resulted in trans people experiencing disproportionate rates of poverty, un(der)employment, precarious housing, criminalization, and violence. We believe in the right to self-determine gender identity and gender expression free from coercion, violence, and discrimination. We advocate for access to health care that will meet the many needs of our diverse communities, while working collectively to build supportive, healthy, and resilient communities.

Finally, we would like to acknowledge and honour the work and lives of those who have come before us: trans people who have struggled and fought for their right to live in peace and dignity, and to make decisions about their bodies on their own terms. This guide is dedicated to all of the trans elders whose work and persistence make it possible for resources like this one to be created, and to the resiliency and strength of trans youth who build and foster supportive community even in hard times.

Trans people have been pushing for greater access to health and social services throughout history. This activism continues today, and the state of access to services is constantly shifting.

an eye to the future
We wanted to end this guide with an eye to the future. “Self-Referred” is meant as a roadmap for trans people dealing with health and social services in Québec. Please share this guide and the knowledge that you have gained from it with others, because the more we equip our communities with knowledge and information, the stronger and more resilient we will become.

Finally, we also wanted to speak to the activism of day-to-day survival, in other words, how sharing our stories, standing up for each other, or simply making it though a really rough day are all ways in which we are struggling for broader social change in our communities. When we look out for each other, talk about our challenges, support a friend when they feel like their options have run dry, persuade a new GP to start prescribing hormones, and build families and tell our children our stories, we become stronger. When we support each other post surgery, write to our friends and loved ones in jail, warn each other about bad clients, create spaces for our youth to meet and socialize, we are activists and leaders in our communities. When we fight against police brutality and repression, demand our right to easier access to name and sex designation changes on our IDs, help create networks of doctors and providers who work with the undocumented migrants in our communities, we are telling the world that we live here, too!

It is in part because of this activism of day-to-day survival that social services for trans people exist today. This guide was initiated as a part of a project that was started by trans people fighting for trans support services in Québec . There will always be a lot of work to do to improve trans access to respectful and relevant health and social services, but changes will happen, as long as we are empowering ourselves with knowledge and information.

the termite collective

(((The Termite Collective is a group of creative and concerned people who want to expose the ever increasing repressive nature of prison through political parody and criminal cabaret. Most of the situations and experiences in the skits are lived and true, only the names and faces have been changed.)))

This play was performed at the Study in Action conference 2012, Montreal. 

PRE-ACT/ENTRY

The stage is filled with posters. They read: “no tobacco beyond this point”, “photo ID required”, “no cell phones”, “all persons can be searched beyond this point”, “all information acquired is kept on file”, and “all persons can be subject to Ion scan, search by drug dog, strip search, metal detector”. A laptop is visible, its screen filled with a game of solitaire. Two screws, eating bananas, sit near the laptop. Their name-tags read “my name is Screw.”

As ‘program’ is being handed out, the two screws ad-lib with the dialogue below as audience members filter in, the kind of questions you would get if you were entering a prison.

SCREW #1, SCREW # 2: How many rings are you wearing? Do you know this person? Do you have a prescription for those glasses? Are you carrying a cell phone, tobacco or more than $10 cash? Then you’ll need a key for this locker. Are you willing to submit to being searched?

OPENING

MEGAPHONE VOICE (heard from offstage): END OF ACTIVITIES. RETURN TO YOUR CELL BLOCKS FOR COUNT.

ACT I
SCENE I

Twilight Zone theme music plays as Rod Sterling enters the stage.

SHOW HOST, ROD SERLING: What you are about to experience is like being in another dimension; another dimension of illogic and of no reason; a journey into a land that boggles the mind. Surreal as these stories may seem, these stories are true. This is a truth that is hardly ever written, but a truth that is real none the less. You are entering the ‘parole sans parole’ zone.

ACT I
SCENE II

Mr. Rogers’ Neighbourhood theme music plays as characters enter.
A powerpoint displays statistics on UTAs and ETAs*
Mr. Harper is escorted in by two Vultures. Mr. Harper takes a seat and Vultures stand on either side of him. Occasional cash register (cue $) sounds are heard throughout the speech.

MR. HARPER: Hello everybody and welcome to Mr. Harper’s neighbourhood. I am Stephen Harper. Yes, the Stephen Harper. I am a lucky man. I live in a nice neighbourhood, but more importantly, I live in a safe neighbourhood. How about you? Are you living in a safe neighbourhood? You may think it is safe, but are you sure it is? You see that house down the street? Well, there is an ex-convict living there. A dangerous man. How come he’s not in jail? Well, he is on parole. Yes, I know, our parole system is too lenient. Blame it on all those years of Liberal governments.

So, you still feel safe knowing who lives there? Well, I’ve got more bad news for you. Check that building over there. Right now as I speak, there are a half dozen prisoners attending a meeting there. No, not ex-prisoners but actual inmates that aren’t on parole. How can this be possible? Well, these “people” benefit from a program called escorted temporary absences. Meaning that for a few hours, they are allowed to roam about your neighbourhood.

‘Well’, you’ll say, ‘at least they are escorted by guards who won’t let them do anything harmful.’ No, sorry, that’s not how it works. Do you want to know who escorts those criminals? Volunteers – soft-hearted, left-wing pinkos who should take care of victims of crime instead of giving support to the scourge of society. Oh, by the way, those inmates attending that meeting over there are not petty thieves. They are murderers. The only thing that stands between them and you are unarmed volunteers (mostly women, on top of it). So, I’m asking you again. Do you still think you live in a safe neighbourhood? That’s what I thought.

I don’t want to scare you even more but there is another program for inmates called un-escorted temporary absences. Yes, you heard me, un-escorted. No supervision. Not even softy volunteers to rein them in. They’re on the loose! So, now every time you’ll be walking around your neighbourhood, you’ll always be wondering, “Is he one of them?” and “What about this one, he’s got a mean face.” Well, thank the Lord I am your Prime Minister. In the past four years, through all kind of administrative measures, I have managed to cut down the number of escorted absences by 19% and the un-escorted ones by 30%. And, believe me, that’s only the beginning. I intend to do anything in my power to cut them down by another 30%. And…Oh excuse me, my cell phone. Bear with me please. Hello?…Oh really? Is that so? Well, thank you, I’ll catch you later.

Ladies and gentlemen, I have a scoop for you. We’re going to call elections! So, as I was saying before being interrupted, I plan to cut down on inmate absences by another 60%.

AUDIENCE MEMBER: I thought you said 30%!

MR HARPER: Excuse me? I said 30% before? Are you sure? Then I misspoke. I meant 60%. But let’s not waste our time with figures. The bottom line is that I want to keep more people in jail for a longer time. And make it harder for those who are out to stay
out! So you can finally live safely in your neighbourhoods. I invite you to join me in a discussion on this topic. I’m confident that you will all endorse my views on public security. Thanks for listening to me. And, God bless me.

Mr. Rogers’ neighbourhood music plays as Vultures escort Mr. Harper offstage. Birds theme music plays between acts.

ACT II
SCENE I

Twilight Zone theme music plays as Rod Serling enters the stage.

SHOW HOST, ROD SERLING: You are holding a key. A key to a door that is seldom ever opened by those not used to the inexplicable, the absurd, the non-logics of the workings of the Correctional Services of Canada. For those not used to confusion and irrationality, be warned: these stories are not suitable for those who use their minds.

Twilight Zone theme music as Serling exits stage.

ACT II
SCENE II

The Screws sit around a table covered with stacks of papers and folders. There is a large rock on one of the stacks of papers.

characters:
screw #1 newbie
screw #2 jerk
screw #3 vacationer

Screw #1 and Screw #2 are sitting at the table sifting through papers, disinterested, talking about what they did this weekend, up-coming holidays, golfing, salaries, whatever…..at one point one of them decides it’s almost lunch time and maybe they should do a little ‘work’

SCREW #1: So, I’ve got this one case. No institutional charges, no incidents. I was thinking of giving him a full recommendation to the board.

SCREW #2: No charges? That doesn’t mean he didn’t do anything – just means he didn’t get caught. Screw ‘em… I got this one guy I hate. I didn’t submit the psych report – he can wait. (cue $)
SCREW#1: What’s with the rock on those files?

SCREW#2: Oh that… those files aren’t going anywhere anytime soon. (cue $)

Screw #3 walks in with file in hand and adds it to the pile with a rock on it.

SCREW #1: What’s with that file?

SCREW#3: Oh, I’ve only got this one for 6 months ‘cause someone’s on mat leave. She’s a lifer anyways. What’s another six months! Plus, I’m going on vacation for the next few weeks and I already hit my quota for this month. I can’t have any more people going out. Doesn’t matter how ‘eligible’ they are. You’ve seen the press…it’s not a good time to let people out on ‘passes.’ (cue $)

Screws exit taking some files with them, leaving others behind, engaging in idle chatter. Screw #1 returns and sits down, profile to audience so that prisoner can sit facing them, sifting through some papers.

ACT II
SCENE III

Enter Prisoner #1, sits facing Screw with profile to audience; Vultures in the periphery.

SCREW #1: I’m not recommending you for full parole. I don’t think you’re ready yet. You’ve been inside for too long. You have to take it slow. You don’t have enough life experience to be on the street.

PRISONER #1: (obviously trying to control temper) My granddaughter’s turning ten in a few months. I was hoping to be out for her birthday.

SCREW #1: I just don’t think you’re ready. In six months, we’ll see. What’s another six months to you anyway? (cue $)

PRISONER #1: *#@* if I’m not ready now, when will I be ready?! You’re twenty years old! What the *#@* do you know about being ‘outside’!! I could be your grandmother!!!!

Vultures drag her offstage. Screw #1 shaking head. Birds music begins. Screw #2 enters and they talk amongst themselves. Screw #1 takes out sheet of paper and scribbles something on it, puts it on top of files that she takes with her and, with determination, leaves. Screw #2 sits. Enter Prisoner #2.

SCREW#2: I’m recommending you for a closed half-way house.

PRISONER #2: But I thought we talked about how an open half-way house would be better?

SCREW #2: Yeah, but times have changed.

PRISONER #2: Since last week?

SCREW #2: You haven’t done anything to make me think you could handle an open half-way house. You need maximum structure.

PRISONER #2: But I’ve done all the programs you’ve asked for… at least twice. (cue $) I haven’t been hit with any infractions since I’ve been inside!

SCREW #2: Hey! You’re expected to follow the rules! A clean record doesn’t count for anything. (pause) Are you questioning my judgment? Maybe you still have a problem with authority. Maybe another ‘anger management’ program will do you good! (cue $)

Prisoner #2 stares at Screw #2. Nothing more is said. Prisoner #2 stands up and exits. Screw #2 closes file and leaves. Enter Prisoner #3 who waits, waits and waits some more. Screw #3 eventually enters without any regard for delay. They both sit and continue to wait until lights dim.

ACT III
SCENE I

Twilight Zone theme music as Serling enters.

SHOW HOST, ROD SERLING: You have been witness to an utterly disturbing bureaucracy. Within this bureaucracy parole eligibility dates are meaningless. They are lost in a time warped machinery of control where past, future and present have no reference point to time or context. Here peoples’ lives are subject to the workings of ‘the national parole board’.

Serling is interrupted by the distant voices of prisoners chatting offstage. Their voices are silenced by a megaphone announcement, also offstage.

MEGAPHONE VOICE: END OF ACTIVITIES. RETURN TO YOUR CELL BLOCKS FOR COUNT

ACT IV
SCENE I

Twilight Zone theme music starts up again.

SHOW HOST, ROD SERLING: You enter this world at your own risk because it leads to a world that is ‘half-way’ into the future. This is not a new world. It is merely an extension of what began in the old world – a prison. It has patterned itself after every power-hungry ruler who has planted the imprint of a boot on the pages of history. This world has regulations, technology, a system of rules and a legal approach to the destruction of human freedom, but like every other disciplinary apparatus that has preceded it, it has one primary rule: logic is an enemy and truth is a menace. Any state, any entity, any ideology that fails to recognize the worth and dignity of every human being is obsolete. These words are direct quotes from Rod Serling, of the Twilight Zone.

Twilight Zone theme music as Serling exits.

Powerpoint image appears. It reads: “Do not leave a 100km radius without receiving permission from your parole officer.” Below the words is a map of the island of Montreal with a red circle around it.

ACT V
SCENE III

Powerpoint image appears. It reads: “Testimonial of lack of transparency.”

PRISONER #2: After spending 22 years in prison, I was finally released to a closed halfway house, but things didn’t go the way I expected. I was told that since I’m a lifer, I have to tell my potential employer that I have a criminal record before I start working for him. This took away a lot of job possibilities, so I ended up only getting minimum wage jobs that nobody wants. Since I have to do at least 3 years in the halfway house before I’m eligible for full parole and since my room and board is free, I tried many different jobs. If, after a couple of weeks, it wasn’t the job for me I’d quit and find another one. I wanted to work, but the jobs I was getting were in bad places. In one place they were making paint. You had to wear a mask, and after work you’d take a couple of showers and still smell. So I quit, as did other people that had started the job at the same time as me.

Believe me, I really wanted a job, even if it was at minimum salary, but I wanted one that I would like, that I could get ahead with in the future. But after three month of this, my PO decided that wasn’t ok, that he wasn’t recommending me for an open halfway house. So, I got another 6 months in the closed halfway house. One month later I did find a job that I liked and things seemed to be going well for me. Or so I thought. First there was a problem with money. I bought a car and my mom was supposed to help me financially with the insurance, but she didn’t make the payment. She couldn’t remember that she was supposed to (we later found out that my mother was in the early stage of Alzheimers). So, I was labelled as being disorganized. This was not enough to send me back to prison, but I had a red mark on my file.

Then I started going out with this girl from my home town and my PO found out that for many years my girlfriend had been a stripper. I hadn’t mentioned this to him. I told him that yes I had known about this but that she hadn’t been a stripper for the last ten years. She had quit when she got pregnant with her little girl. I didn’t try to hide this fact from my PO. It was ten years ago! I didn’t think of mentioning it! Me being a criminal in the past…I certainly didn’t judge her on it. Anyway, as far as I know being a stripper isn’t a criminal offence. My PO accused me of something called “lack of transparency” and sent me back to prison. I did two years in prison before I was released to a closed halfway house again. Can you believe that?

*UTA stands for unescorted temporary absences and ETA stands for escorted temporary absences. These are “codes” that prisoners serving long/life sentences can qualify for part of the way through their sentence as a supposed way to ease them back into the community. The Harper government has been adamant about cutting down the number of allowed UTAs and ETAs, the stats are changing drastically from year to year.

*The money sounds are just a cash register “cha ching” sound. They symbolize money CSC is making off of various changes in the prison system.

*The BIRDS sound is supposed to be the sound of the birds in Alfred Hitchcock’s movie of the same name. Throughout the play it is used to symbolize the repression of resistance.

*Conditions are things that people are required to do or not do once they are out on parole. Examples include non-association with other people with criminal records, not being allowed to drink or go into bars, weekly urine tests, weekly psychologist visits, and attendance requirements for programs like AA, CA etc.

julie matson

(((Julie is a Vancouver-born, Montreal-based social justice activist, organizing around police impunity, police brutality and issues of class equality. She is also a hairdresser, and can be heard on the airwaves of CJLO 1690 AM, Concordia’s campus radio station. Julie also performs musically, under the moniker Echo Beach.)))

The US History Encyclopedia defines police violence and brutality as a form of police misconduct that constitutes intentional use of excessive force by police officers. Force should only be used up until the point of compliance, for a legitimate lawful purpose. Other forms of misconduct can include false arrest, racial profiling, intimidation and police corruption. Throughout history, race and class discrimination have laid the groundwork for ongoing policies and prejudices that still exist in current times. As a result, police violence and impunity remain publicly sanctioned means of social control, perpetuating race and class stereotypes and the ongoing criminalization of those most marginalized in Canada. How do police use race and class profiling to criminalize marginalized communities and then rationalize all levels of violence, including death, when “policing” our streets? By considering some cases from the Montreal area, this paper aims to delineate connections between race and class profiling in everyday police patrol and activity, and to consider some possible means of address.

There have been over 60 deaths caused by the Montreal police since 1987 (Flics-assassins), most of which have been visible minorities or economically impoverished people. The institutionalized logic that people at the bottom of the social and economic classes are the first to commit crimes is the dominant discourse informing everyday police work, judges’ decisions, and many other public service departments. Skin colour is closely tied to one’s position in society, and those marginalized by race and class are also often seen as disposable and inferior (Tator & Henry, 2006, 10). “Racial profiling” refers to police behaviour based on stereotypes and prejudices, and refers to the discretionary authority of the police to control racialized minorities.

Mohamed Anas Bennis was walking home from morning prayer at his nearby neighbourhood mosque on the morning of December 1, 2005 when he was shot by a Montreal police officer. The officer claims that Anas attacked him with a kitchen knife, although no evidence has been shared to support this claim. The authorities are withholding valuable video footage of the attack, something the family has requested repeatedly to help shed light on the incident. The family is still waiting for a public inquiry into Anas’ death; they are asking for the release of investigation reports concerning his death, a full public independent inquiry, and an end to racial profiling and police impunity (Bennis, 2010).

Quilem Registre, a Haitian-born Montrealer, was tasered six times in the span of 53 seconds, and was the second person in a week in Canada to die as a result of being tasered. He died in hospital on October 18, 2007, just four days after Robert Dziekanski died at the Vancouver International Airport. Medical staff at Sacré-Cœur Hospital were initially told that he was in a motor vehicle accident, and did not treat him for the taser injuries that were unknown to them. He suffered cardiac arrest, and coroner Catherine Rudel-Tessier stated that “multiple electrical shocks possibly contributed” to his death. No charges have been laid against any of the officers involved, and the family is still waiting for a public inquest (Registre, 2010).

Gladys Tolley was an Algonquin woman struck down on the side of Highway 105 by a patrol car just outside Maniwaki, Quebec on October 5, 2001. The family was informed of her death after the case was closed. The coroner made his report without even seeing Gladys’ remains. The investigation was conducted by the brother of the officer driving the patrol car. The family is still struggling to receive data regarding her death, and continue to seek justice through independent investigative channels (Tolley, 2010).

Fredy Villanueva was just eighteen years old when he was shot to death on August 9, 2008. He was unarmed, playing dice with friends in Henri-Bourassa Park in the sub-division of Montreal North. The ballistics evidence shows traces of gunpowder on his shirt, estimating the gun that fired the shot that killed him to be within fifteen inches of him (Montgomery, 2009). Fredy’s brother, Dany, who was one of the key witnesses to Fredy’s death, is currently waiting for a hearing that will decide if he will be deported back to his native Honduras (Solyom, 2010). Following the police’s investigation into the death of Fredy Villanueva, the Quebec director of prosecutions recommended no charges be laid for the officer that fired the gun. Ombudsman Raymonde Saint-Germain proposed the establishment of a Special Investigations Bureau, specifically so that the police are not investigating police misconduct, but Public Security Minister Jacques Dupuis rejected the report (Dougherty, 2010).

In each of these cases, racial profiling was present in the judgement to act by the police officers involved. The Ontario Human Rights Commission declared in a 2003 racial profiling inquiry report that “practical experience and psychology both confirm that anyone can stereotype, even people who are well meaning and not overtly biased (Tanovich, 2006, 14). Police officers and other law enforcement agencies may not even realize they are racially profiling. Our country’s history of racism has laid the foundations of our institutionalized race-based judgements, which have linked racial groups to certain types of activities and stereotypes. This stereotyping has also been fed by the media, as well as through the misinterpretation of information in reports and studies by police and government agencies (Tanovich, 2006, 15).

Proactive policing means being able to identify what abnormal looks like before assessing what do in a given situation – this means that people tend to be categorized by how they look instead of what they are doing (Tator & Henry, 2006, 27). This is evident in police patrolling in Montreal and other Canadian cities, where police officers looking for crime will find it according to biased perceptions. They over-police poorer, more racially-diverse neighbourhoods, searching out crime (Pedicelli, 1998). In a survey of Toronto area high school students in 2000, non-white students were four times more likely to be stopped and six times more likely to be searched by police than the white students, even though none of them were engaging in illegal activities (Tanovich, 2006, i). Research also shows that in Canada police are more likely to use force when dealing with visible minorities and the poor, reflecting the institutionalized race and class biases ingrained in Canada’s Criminal Justice System (Pedicelli, 1998, 20). There is more and more evidence of racial profiling in Canada, with one of the most recent being a UN report released in March 2010 outlining the poor treatment of minorities in Canada. Ms. Gay McDougall, the UN’s Independent Expert on minority issues states:

The concerns included racial profiling as a systemic practice, over-policing of some communities in which minorities form a large percentage of the population and disturbing allegations of excessive use of force leading to deaths particularly of young Black males. Perceptions persist that the police act with impunity in some localities and that investigations are not conducted by independent authorities. Minorities feel that the justice system is failing them and that mechanisms of redress, including Human Rights Commissions are inaccessible, underfunded and under threat. It is essential that investigations into serious allegations of police misconduct are carried out by bodies that are perceived by the communities to be independent and that mechanisms of civilian oversight are established (McDougall, 2010).

Section 25 of Canada’s Criminal Code states that an authorized law officer is allowed to administer use of force in the enforcement of the law, in self-defence, in defence of others, and in situations of arrest if it cannot be done with less force. It is not allowed if “unjustified” or intended to cause death or grievous bodily harm (Chappell & Graham, 1985, 35). This gives an incredible amount of power to police, without setting guidelines for what constitutes an appropriate or justified use of force. Issues of police misconduct and guidelines for reprimands need to be clarified. Officers involved in in-custody deaths must be held accountable and face consequences for their actions.

A thorough review of how police officers are trained could be a good place to start. In early 2009, two off-duty police officers in Vancouver were charged with the assault and robbery of a delivery man. They had asked the delivery driver for directions, assaulted him when he couldn’t help them immediately, and took his phone so he couldn’t call for help. One of the officers involved in the altercation was a use-of-force expert at the Justice Institute. In this case, his “use of force” involved punching Indian-born Feroz Khan three times in the head as he was out delivering newspapers. The officer was suspended, without pay, and lost his position at the Justice Institute (Hansen, 2009). Examples like this highlight not only the racial mentality of many working police officers, but also their inability to rationalize the consequences for their actions. The officers were charged with robbery, one served an in-house arrest term of three weeks, and both were able to keep their jobs. Khan, the victim of their unwarranted attack, was not able to return to work, and is now emotionally damaged and destitute (Hall, 2009). Changes need to be made in terms of punishments for police involved in cases of police violence, both in order to end race and class profiling and discrimination, and also to ensure that police are aware that there will be repercussions for their actions.

To make a significant impact, the processes of dealing with issues of police impunity must come from a place of compassion. The involvement of outside communities to come up with solutions in the instances of police brutality could be a positive approach toward coming up with a greater picture of healing, not only for the families involved, but also for the community as a whole. Community input could also help build accountability for injustices committed by police or other official institutions. Combined with stories of human experience and emotion, this could help to provide a more complete picture of each incident, rather than having the hegemonic race and class of society determining what the public will see and know about these incidents. Finally, the biggest impact toward accountability in cases of police brutality and impunity will come through external investigative bureaus that review each case brought forward, rather than through the same police departments that were involved in the initial complaints.

references

Bennis, Najlaa. 2010. Never Again! Families Speak out Against Police Killings and Impunity. Panel at The Forum Against Police Violence and Impunity, January 29 – 31 in Montreal, QC.

Chappell, Duncan, and Linda P. Graham. 1985. Police use of deadly force: Canadian perspectives. Research report of the centre of criminology, University of Toronto. Vol. 23. Toronto: Centre of Criminology, University of Toronto.

Dougherty, Kevin. 2010. Proposes civilian Special Investigations Bureau for such cases as Fredy Villanueva shooting. Montreal Gazette: Quebec bureau. February 17.

Flics-assassins. 43 personnes tueés par le SPVM. 2010/01/16. http://flicsassassins.wordpress.com/

Hall, Neal. 2009. Police officer gets 21-day house arrest sentence for assault. Vancouver Sun. July 29.

Hansen, Darah. 2009. Police officer to testify against colleagues charged with assault, robbery. Vancouver Sun. February 27.

McDougall, G. 2010. Statement by the United Nations Independent Expert on minority issues, on the conclusion of her official visit to Canada. United Nations High Commissioner for Human Rights. http://www2.ohchr.org/english/issues/minorities/expert/index.htm

Montgomery, Sue. 2009. Ballistics expert testifies at Fredy Villanueva inquest. Montreal Gazette, December 10.

Pedicelli, Gabriella. 2010. No Justice, No Peace – Why People Leave the Police Force. Round Table at The Forum Against Police Violence and Impunity, January 29 – 31 in Montreal, QC.

Pedicelli, Gabriella. 1998. When police kill : Police use of force in Montreal and Toronto. Montréal: Véhicule Press.

Registre, Francine. 2010. Never Again! Families Speak out Against Police killings and Impunity. Panel at The Forum Against Police Violence and Impunity, January 29 – 31 in Montreal, QC.

Solyom, Catherine. 2010. Cop who shot Fredy Villanueva had a good reputation in Montreal North, he testifies. The Montreal Gazette, March 9.

Tanovich, David M. 2006. The colour of justice: Policing race in Canada. Toronto: Irwin Law.

Tator, Carol, and Frances Henry. 2006. Racial profiling in Canada : Challenging the myth of “a few bad apples.”. Toronto: University of Toronto Press.

Tolley, Bridget. 2010. Never Again! Families Speak out Against Police Killings and Impunity. Panel at The Forum Against Police Violence and Impunity, January 29 – 31 in Montreal, QC.

julie matson

(((Julie is a Vancouver-born, Montreal-based social justice activist, organizing around police impunity, police brutality and issues of class equality. She is also a hairdresser, and can be heard on the airwaves of CJLO 1690 AM, Concordia’s campus radio station. Julie also performs musically, under the moniker Echo Beach.)))

Julie presented on related topics at Study in Action conference 2012, Montreal on behalf of the Justice for Victims of Police Killings Coalition. The Justice for Victims of Police Killings Coalition in Montreal brings together directly affected families and friends of police killings, as well as their allies. 

My name is Julie Matson, and my dad, Ben Matson, was killed, without reason, by the Vancouver Police Department in May 2002. He was beaten and kicked to death, choking on his own vomit while being restrained in a prone position.

Losing a loved one is one of the hardest things to go through, but losing them in such a violent, surreal way is beyond imagination, especially at the hands of those we are led to believe are here to serve and protect.

Throughout the process of dealing with my dad’s death, from the initial investigation, through to the public inquest, I couldn’t ignore the blatant use of profiling, be it class, race or otherwise, and the continual upholding of systemic impunity and privilege that the police have.

I am fortunate enough to have found an amazing group of friends within the other families and supporters that have united to speak out against police violence and impunity. Together, we have organized memorial marches and vigils around October 22nd, a date that is recognized internationally as a day against police brutality and impunity.

One of our main focuses is to commemorate the lives of our loved ones, and demand an end to police violence. Whether the killings were a week ago, a year ago, a decade ago, or three decades ago, we are here to honour the memories of those that have been killed at the hands of the police

We are planning another march for this coming October 22nd, and welcome all to the processes of organizing and supporting our efforts. We have a website for more information at www.22octobre.net.

We need to find other strategies of harm reduction on our streets. We need better ways of dealing with people suffering from mental health issues other than the police. Our society needs a better way to care for vulnerable people with support and compassion, rather than with violence and weapons.

I’ve seen first-hand how proposed solutions become the next wave of tools of death and injury, such as the use of tasers. We need to identify that the problem is not crime; the problem is not violence. The problem is the police unjustly killing and injuring people.

We need radical solutions for radical problems – I am calling for the police to be disarmed, and for a ceasefire on our streets. We need less violence and more compassion on our streets.

andrea debruijn

(((Andrea is completing her BFA in Studio Arts with a minor in Sexuality Studies at Concordia. She serves on the executive of Concordia’s Women’s Studies Student Association and is a collective member of the Prisoner Correspondence Project, a pen-pal program and resource library for GLBTQ inmates in Canada and the U.S.)))

This paper was presented at Study in Action 2012, Montreal.

“Fat! It’s three little letters. What are you so afraid of?”

-Joy Nash, “A Fat Rant”

Joy Nash’s self-produced video, entitled “A Fat Rant,” has garnered 1.6 million views on YouTube. During the course of its eight-minute running time, Nash unabashedly declares her weight (224 lbs), criticizes the fashion industry for its narrow range of clothing sizes, and cackles at the prospect of dieting. Embedded in her sassy monologue lies a radical proposal: that it’s okay to be fat. Indeed, fatness is overwhelmingly feared and reviled within contemporary Western culture. The medical establishment, the diet industry, insurance companies, advertising media, reality television shows, and physical education curricula seem unanimous in their message that fat is unattractive at best, and lethal at worst. A critical feminist framework proves immensely helpful in dissecting discourses that position fat embodiment as undesirable, immoral, and dangerous. By investigating fatphobia through this lens, I endeavor to expose the cultural ideologies that underpin oppressive constructions of fatness and that designate fat bodies as requiring intervention.
In their introduction to the anthology Bodies Out of Bounds, Braziel and LeBesco state that psychological discourses associate fat with recklessness, immoderation, and profligate gratification, and therefore with the violation of corporeal limits (3). Similarly, biomedical discourse serves to establish the fat body as excessive and uncontained, as “unbound” and “out of bounds” (Braziel 235). The body in excess or the body out of bounds is transgressive, and thus subject to regulation and punishment, because it draws attention to the fluid nature of embodiment. Our bodies are not fixed; their boundaries are more flexible and more permeable than we might like to imagine (238-239). Bodies that fluctuate in their size and shape demonstrate the instability of material forms, and defy static categorization. Therefore, they trouble the binary logic that lies at the root of Western thought – that which is invested in concrete divisions between inside/outside, mind/body, male/female, Self/Other (232, 243-244). The intense fear and revulsion with which fat and fat bodies are treated thus becomes readable as a fear of that which crosses, confuses or challenges established boundaries.

Braziel notes that in Platonic and Aristotelian philosophy, fat is gendered as female. The dualistic understanding that governs categories of mind/body and male/female necessarily associates corporeality with the feminine, placing both in subordination to the mind and masculinity (238-239). Fat, then, as “excessive corporeality,” is also excessively female (239, 245). In a similar analysis, Margrit Shildrick theorizes femininity, corporeality, excess, and fluidity through the notion of the “leaky” body. She suggests that the desire to exert control over the body is a desire to contain the body within its appropriate borders, and thus to preserve the supposedly discrete territories of internal vs. external, mind vs. body, self vs. other. However, the female body is represented as unavoidably leaky; what belongs inside inevitably flows outwards. Women’s bodies therefore provoke anxiety and suspicion insofar as they are perceived to threaten the rigidity of barriers that keep “corporeal engulfment” at bay (16-17). Through a synthesized reading of Braziel and Shildrick, we can begin to understand how the Western metaphysical tradition constructs the fat body, like the female body, as exceeding normative standards of acceptability.

Braziel suggests that the gendered nature of fat is what produces such anxiety around fat embodiment. Heather Sykes explores this anxiety and elucidates the inscription of gendered meaning onto fat bodies. In accordance with dualistic conceptions, fat symbolizes the feminine. Fat women are therefore “too much woman” in a patriarchal culture that already devalues and circumscribes female subjectivity (54, 130). Additionally, the fat male body undermines its own gender performance: soft flesh is present when binary associations dictate that firm musculature should appear (54). Whether invoking feminine excess or failed masculinity, fat bodies transgress the boundaries prescribed by normative gender categories. Sykes also insightfully remarks that fat bodies enact transgression not only because of the way they look, but because of the way they move. In a culture that prizes athleticism, the “motions associated with fatness disrupt the type of human movements that are socially constructed as acceptable, productive and skillful” (97). Since bodily movements are themselves highly gendered, fat bodies potentially “queer” normative gender definitions, if those bodies do not move through the world with masculine strength or feminine grace (95).

Applying a gender analysis to the visual perception of fat embodiment exposes the gender anxiety in which fatphobia is rooted. However, Susan Bordo avers that the desire for food and the act of eating are also saturated with gendered meanings that merit consideration in relation to fatphobia. Media images overwhelmingly depict women’s appetites as requiring restriction, while the indulgence of male hunger is portrayed as ordinary, even favorable (108, 112). In order to explain this discrepancy in representation, Bordo delineates the ways in which hunger is discursively linked to “sexual appetite,” highlighting the symbolic overlap between sexual and alimentary pleasure. Proliferating interdictions against “female indulgence” also convey and reinforce lessons about what constitutes befitting female sexual behavior (110-112). Imposed standards of female self-control over alimentary consumption can thus be understood as an element of ideological efforts to constrain female sexuality (114-116).

To substantiate her thesis, Bordo highlights the metaphorical man-eater as exemplary of the threat posed by the “devouring woman.” The man-eater’s ravenous hunger manifests as unbounded sexual desire, which has the power to consume and destroy her male counterpart (117). Her unfettered appetite is doubly grotesque in that it signifies transgression of normative female sexuality: she refuses her socially assigned role as a passive object of male lust. Within the popular imagination, the corpulent woman is akin to the man-eater in that she is assumed to eat voraciously and, by extension, to be sexually deviant, having abandoned all sexual discretion (Mazer 266-267). However, Sykes is careful to note that fat women are also regarded within hegemonic discourse as asexual and sexually undesirable, because their bodies do not conform to normative standards of femininity (130). These analyses reveal the heterosexist paradigm that supports fatphobia, wherein female sexuality is believed to require male presence and validation. At the same time, they hint at questions about fat’s queer potential.

If fatphobia is inflected with worries about the boundaries of gender and sexuality, it is also concerned with those encircling race. Cartesian thought holds the categories of white/black in binary opposition, dressing each side with the meanings attributed to mind/body, male/female and Self/Other. In the same way that corporeality, fatness, and femininity come to be conjoined, so too are people of colour symbolically associated with the body and materiality. When placed within dualistic formulations, fat is both feminized and racialized (Sykes 54). Furthermore, the standards of female beauty that idealize thinness are themselves standards of whiteness (Bass 225, 228-30). Fatness is discursively ascribed to racialized bodies as a way of further marking and marginalizing them as outsiders, as Others. The figure of the black female body has been historically represented as fat within American culture – the mammy and the jezebel comprise conspicuous examples (Sykes 54, 130). Therefore, the insistence upon slenderness as a Western ideal of beauty is also an impulse to distance the white body from the bodies of racial Others. Feminine attractiveness is constituted as that which is expressly not characteristic of women of colour (LeBesco 59).

However, LeBesco reminds us that the rejected body always hovers against the signifying borders of the normative center. In her analysis of fatness and citizenship, she cleverly articulates the relationship between fatphobia, racism and classism:

“If fat people are understood as antithetical to the efficiency and productivity required to succeed in our capitalist economy, then their presence haunts as the specter of downward mobility. Big, profusely round bodies also provoke racist anxieties in the white modern West because of their imagined resemblance to those of maligned ethnic and racial Others; fatness haunts as the specter of disintegrating physical privilege in this case.” (56)

Fat is threatening because it prompts recognition of our own unboundedness, and the instability of our own bodies and social locations. LeBesco’s invocation of the ghost metaphor is especially appropriate here because it underscores the pervasive fear with which fatness is regarded. More significantly, her references to capitalism and the economy also provide a valuable entry point into thinking through fatness as a threat to the borders and integrity of the nation.

LeBesco posits that the regulation of fat bodies arises out of ideas surrounding citizenship. Because fat is presumed to signify the laziness and lack of self-restraint inherent to whichever bodies it marks, fat people are perceived as eschewing the moral values of hard work and self-discipline that supposedly define the American nation. This notion hinges on the assumption that body weight is within the domain of individual influence.¹ Of course, hard work is also required of bodies in order to perpetuate America’s capitalist economy. Discursive constructions of the upstanding American citizen come to equate morality with the ability to productively contribute to capitalist growth (55). As April Herndon indicates: “[A] majority of people in the United States believe that fat is unhealthy, immoral, and often downright disgusting” (125). This designation of fat as immoral partially originates from the symbolic position of fat as that which prevents or opposes productivity, and by extension, the accumulation of wealth.

In direct contrast, the valorization of strong, athletic bodies is linked with the construction of the muscular, military body and its ability to secure the nation’s borders while simultaneously advancing American imperialism abroad. Indeed, the strength of the nation depends on the fitness of the military body to defend the boundary between foreign pollution and domestic health (Sykes 31-32). Nationalist projects employ and rely upon metaphors of the body in order to reify distinctions between inside and outside, Self and Other. Anxieties about the fortitude of the nation-state are consequently brought to bear in the surveillance, regulation, and control of bodies that are suspected of transgressing boundaries in all their permutations. It is therefore unsurprising that the fat body, which challenges illusions of bodily containment and disturbs the defining limits of gender, sexuality, race and class, should be regarded with fear and suspicion.

The marginalization of fat embodiment is consistent with the marginalization of all bodies considered transgressive, excessive, or burdensome. Fatphobia is pervasively and intimately connected with racism, sexism, classism, and other forms of discrimination. By approaching the fat body as a body out of bounds, the insidious hatred and pernicious fear of fat within our culture becomes intelligible as a hatred and fear of all that transgresses normative boundaries.

endnotes

1. It is also worth noting that the alleged mutability of fat is itself contested by many medical researchers (Herndon 125; Solovay 193-94)

works cited

“A Fat Rant.” Joy Nash. Youtube. 2007. Web. 5 Dec. 2011.

Bass, Margaret K. “On Being a Fat Black Girl in a Fat-Hating Culture.” Recovering the Black Female Body: Self-Representations of African American Women. Ed. Michael Bennett and Vanessa D. Dickerson. New Jersey: Rutgers University Press, 2001. 219-30. Print.

Bordo, Susan. Unbearable Weight: Feminism, Western Culture, and the Body. Berkeley, CA: University of California Press, 1993. Print.

Braziel, Jana Evans. “Sex and Fat Chicks: Deterritorializing the Fat Female Body.” Bodies Out of Bounds: Fatness and Transgression. Ed. Jana Evans Braziel and Kathleen LeBesco. Berkeley, CA: University of California Press, 2001. 231-54. Print.

Braziel, Jana Evans and Kathleen LeBesco. Editors’ Introduction. Bodies Out of Bounds: Fatness and Transgression. Ed. Jana Evans Braziel and Kathleen LeBesco. Berkeley, CA: University of California Press, 2001. 1-15. Print.

Herndon, April. “Disparate But Disabled: Fat Embodiment and Disability Studies.” NWSA Journal 14.3 (2002): 120-37. Print.

LeBesco, Kathleen. Revolting Bodies? The Struggle to Redefine Fat Identity. Amherst, MA: University of Massachusetts Press, 2004. Print.

Mazer, Sharon. “‘She’s so Fat…’: Facing the Fat Lady at Coney Island’s Sideshow by the Seashore.” Bodies Out of Bounds: Fatness and Transgression. Ed. Jana Evans Braziel and Kathleen LeBesco. Berkeley, CA: University of California Press, 2001. 257-76. Print.

Shildrick, Margrit. Leaky Bodies and Boundaries: Feminism, Postmodernism and (Bio)ethics. London: Routledge, 1997. Print.

Solovay, Sondra. Tipping the Scales of Justice: Fighting Weight-Based Discrimination. Amherst, NY: Prometheus Books, 2000. Print.

Sykes, Heather. Queer Bodies: Sexualities, Genders, and Fatness in Physical Education. New York: Peter Lang, 2011. Print.

eve sanders

(((Eve is a creator and designer of jewelry.  She embarked on a second career as a jeweler, initially as a way of recuperating from an accident that resulted in severe persistent pain and the loss of cognitive capacities.  In her first career, she was a professor of English literature; she taught Renaissance drama and poetry and published work about the intersection of literature and history, including an award-winning book on gender and literacy.)))

The paper that Simone and Eve present here is based on a co-authored paper they gave at the Study in Action conference 2012. 
Their collaboration began with exchanges about women writers. Recently, their discussions grew into a shared project on pain and disability as lived experiences and as subjects of study. Their joint research focuses on the social construction of pain and on the intellectual and technical means used to describe and evaluate it.

Pain, in its most elemental form, is pre-language. Its outcry is often raw, disruptive. Yet in our statistic-driven society, as Simone Lucas’ analysis shows, pain has been defined largely in terms set in the 1970s by the McGill Pain Questionnaire (MPQ), a diagnostic tool translated into more than twenty languages worldwide. The MPQ was based on the research of Melzack and Wall later published as The Challenge of Pain (1983). It presents pain as a subject for description and inquiry, a noun to be modified by a series of adjectives chosen from a list.

Simone Lucas has described two of the primary objectives that the MPQ serves: communication and measurement. The questionnaire is meant to provide physicians with descriptive information that will assist in assessing qualitative aspects of the patient’s pain. Second, it is supposed to provide physicians with a quantitative account of the patient’s condition: to measure the amount of a patient’s pain via a yardstick with which to calibrate progress or setbacks.¹ A third aim of the MPQ is more covert: to evaluate the patient’s psychological state. The questionnaire asks patients to assign different numeric values to sensory experiences linked with the pain (throbbing, stabbing, crushing, wrenching, burning, etc.) and also to emotive dimensions attributable to the pain (viciousness, wretchedness, punishment, etc.). Without the patient being informed of the fact, the questionnaire is being used to assess mental as well as physical health. In the process, pain conditions (disorders of the brain and nervous system such as phantom limb pain, cluster headaches and burning mouth syndrome) are being set apart from most other medical conditions (for example, heart disease or pancreatic cancer) by making their diagnosis partly an assessment of the patient’s emotional response to his or her illness.

In spite of imperfections and a lack of transparency, the MPQ nonetheless has played a critical role in changing theoretical and clinical understandings of pain. By providing a mechanism for collecting statistical data about the pain of different patient groups, the questionnaire helped foreground Pain Medicine as a valid field for research and helped make the alleviation of pain a reasonable expectation on the part of patients. By the 1990’s, for the most part, pain was no longer seen as an unavoidable stage of illness to be observed rather than counteracted; instead, untreated pain was widely understood as a dynamic that could set off cascades of lasting system-wide effects and, in some cases, lifelong disability. Pain as a noun with adjectival qualifiers helped found both a field of study, Pain Medicine, and a clinical setting for carrying out research and for treating patients – the Pain Clinic.

Today, however, what progress had been accomplished from the seventies to the nineties under the rubric of “Pain as a noun” is being threatened in the twenty-first century by an emerging alternative: “Pain as a verb”. The Washington State doctor proposing this new definition, part of a larger movement aimed at reducing opioid prescriptions, explains his views in a video titled, “Pain as a Verb” (Seattle Times, 2012). He argues that in order to better address the problem of pain a shift in paradigm, accompanied by a redefinition of pain as a verb, is required. In fact, “pain” is already used as a verb in English; the existing usage is that of a transitive verb meaning to cause emotional distress to someone. However, the new usage being proposed by the Washington State doctor is that of pain as an intransitive verb. According to his video, the patient must be educated to see pain as an action in his or her control. This patient would not tell a doctor, “I have pain,” but would say, instead, “I pain.” As the video explains, speaking for the patient with severe pain, “Pain is not in the brain . . . pain is in me.” The idea that pain is not in the brain contradicts decades of research on pain and the brain, particularly in the field of neuroplasticity and changes in brain structure and chemistry associated with protracted pain. By focusing on the attitude and language of those in pain, the video changes the subject of the discussion from that of alleviating pain and addressing its neurological basis to that of controlling the patient’s behavior. From this perspective, severe persistent pain is less an alarm-bell for prompt medical intervention by doctors and specialists than it is a signpost of a psychological problem to be owned and dealt with by the patient.

The redefinition of pain as a verb is not just an exercise in semantics. Although this specific shift in terminology is the proposal of a single individual, the idea behind it is part of a larger campaign to rewrite actual laws governing the prescription of opioid medications, the most potent medications available today for treating pain. In Washington State, a new law went into effect in 2011. This law was drafted by the author of the video, together with a state representative (a former drug addiction counselor) and the medical director of the state’s Department of Labor and Industries (a manager of worker’s compensation) (Meier, 2010). The law places new restrictions on pain medication with the aim of decreasing the number of opioid prescriptions being written; for the remainder of patients in severe pain still eligible for opioids under the new law, urine testing is now mandated, even when patients are in no way suspected of breaking the law or of abusing their doctor’s trust (Berens & Armstrong, 2011). Now that the law is in effect, patients prescribed opioids to reduce their suffering, grandmothers with trigeminal neuralgia and paraplegic war veterans, must find transportation to drug testing centers and wait in long lines holding cups of urine. False positives, a regular occurence in drug testing of the kind, risk making patients who are just trying to get better, subject to harassment or even criminal charges.

The change of focus in public policy from reducing pain to reducing opioid prescriptions is having a profound impact on doctors, patients, and society at large. Some 116 million Americans live with an intractable pain condition.² Pain impacts more Americans than diabetes, heart disease and cancer combined. In Canada, chronic pain affects up to 40% of the population, according to some studies; a recent newspaper article puts the number of chronic pain sufferers at 6 million.³ Yet current media and political campaigns are re-framing this critical public health concern as a problem of drug abuse rather than a problem of effective treatment for millions living with pain disorders.

Theoretically and practically, pain is being redefined from a complex neurophysiological dysfunction amenable to treatment to an emotional-behavioral problem that is medically insoluble. In other words, what was once treated as a scientific and clinical matter, is becoming a behavioral and law-enforcement issue. In “Pain as a Verb,” the Washington State doctor explains what this re-conceptualization of pain means in practice:

I see patients that pain very well. They have things I don’t even understand how they survive. But they pain in a good way and I learn from them. And then there are others who pain very disruptively, disruptive to them, destructive to their family nucleus and to society. So our goal is to help them to pain a little better (Seattle Times, 2012).

Only patients who pain without complaint, without disruption to the “family nucleus,” earn the doctor’s praise: “they pain in a good way.” One consequence of seeing “Pain as a verb” is a change in the doctor’s relation to the patient. Under the rubric of Pain as a verb, the doctor’s role shifts from that of healer to that of moral judge who rates patients as praiseworthy or blameworthy on the basis of their supposed pain endurance.

The novelty of this approach is not that the attitude of the person in pain is being assessed. The McGill Pain Questionnaire, as we have seen, has a psychological dimension; it asks patients to describe pain sensations they experience by selecting words meant to reveal their emotional responses (e.g. “cruel,” “fearful,” “miserable”). However, Melzack and Wall dedicated The Challenge of Pain to “the millions of people in every country who live and die in needless pain” (1983, v). They attended to the emotional dimension of pain in order to highlight kinds of suffering they believed to be treatable and therefore “needless.” By contrast, those who today promote a shift to a more disciplinary approach depict pain as a burden to be borne by the patient rather than a medical condition to be remedied or improved upon by the doctor. While the video states that the doctor-narrator wants the patient to be “the driver of this bus,” i.e., the master of his or her pain condition, in reality the extent of the actual agency to which the driving metaphor refers is limited to the stoic toleration of pain, a capacity to pain intransitively, avoiding outbursts or demands. The patient is invited to drive a bus that seems to be permanently parked on the side of the road.

Is pain a noun? Is pain a verb? Clearly, it is both. But what both these models of pain leave out are nouns, verbs, and adjectives chosen by patients themselves and formed by them into sentences and paragraphs. In other words, Pain as a narrative. In art and literature, narratives of pain are central to works as varied as Michelangelo’s Pieta, Picasso’s Guernica, Frida Kahlo’s self-portraits, Verdi’s La Traviata, Thomas Mann’s The Magic Mountain, and Toni Morrison’s Beloved. Yet the engagement with pain that audiences find enthralling when it concerns an imaginary character in a novel or play somehow does not carry over to the pain of actual people in the world around us, in medical settings, in the workplace, in neighborhoods and communities. In the real world of the twenty-first century, even in doctors’ offices and hospitals, there is mostly aversion to hearing what people in pain have to say in their own words. Nonetheless, the stories that each person living with protracted pain has to tell are crucial for the medical system to hear so long as alleviating pain remains a fundamental responsibility of every physician. In addition, those stories offer knowledge of our shared humanity and matter for society at large. Understood in its full complexity – not abstracted, reduced, judged or disembodied – pain brings us to crucially important places: to the limits of language and of numbers, to intersections of our spiritual and physical beings, and to moral questions about deciding what others should suffer.

endnotes

1. In the words of Melzack and Wall, “If the study of pain in people is to have a scientific foundation, it is essential to measure it” (Melzack and Wall, 37).

2. Maia Szalavitz, “Report: Chronic, Undertreated Pain Affects 116 Million Americans,” TIME Healthland, June 29, 2011 (http://healthland.time.com/2011/06/29/report-chronic-undertreated-pain-affects-116-million-americans, accessed August 10, 2012).

3. Chronic Pain Association of Canada, “What is CPAC” (http://www.chronicpaincanada.com/cpac.html, accesses August 10, 2012); Sharon Kirkey, “Treating the invisible affliction,” Montreal Gazette, October 3, 2011, p. A4.

works cited

Berens, Michael J., and Ken Armstrong (2011). “New state law leaves patients in pain,” The Seattle Times, December 11, 2011 (http://seattletimes.nwsource.com/html/localnews/2016994769_silent12.html).

Meier, Barry (2010). “Move to Restrict Pain Killers Puts Onus on Doctors,” The New York Times, July 28, 2010 (http://www.nytimes.com/2010/07/29/business/29pain.htm).

Melzack, Ronald, and Patrick D. Wall (1983). The Challenge of Pain. New York: Basic Books.

Seattle Times (2012). “Pain as a Verb” (video; http://video.seattletimes.com/1096037947001/pain-as-a-verb).

 

simone lucas

(((Simone is a senior at McGill University where she is a member of the QPIRG board of directors and is writing an Honours thesis on site-specific feminist performance art.)))

The papers that Simone and Eve present here are based on a co-authored paper they gave at Study in Action 2012, Montreal. 
Their collaboration began with exchanges about women writers. Recently, their discussions grew into a shared project on pain and disability as lived experiences and as subjects of study. Their joint research focuses on the social construction of pain and on the intellectual and technical means used to describe and evaluate it.

introduction
In her memoire “Inside Chronic Pain”, Lous Heshusius shares her struggle to articulate the persistent pain she has lived with for over a decade. She experiences pain that is impossible to put into words, and that is alien to others. Conveying pain to her doctors is a particular challenge: “I try to speak to doctors about the severity of my pain. My words float strangely in the air. As I pronounce them, I myself become a spectator. As soon as I begin to speak, I am no longer there.”(15) For millions of people living with chronic conditions around the world, all-consuming pain is a daily occurrence, and leads to social isolation. People living with chronic pain confront reactions of disbelief, and find themselves convincing friends, health professionals and strangers that their pain is real, present and disabling despite the fact that it is invisible. Yet often language fails. The “McGill Pain Questionnaire” (MPQ), a questionnaire developed by Ronal Melzak for use in clinical settings, attempts to enable the expression of pain by providing a list of seventy-eight words. The questionnaire aims to present health professionals with a fuller picture of the characteristics and intensities of a painful experience. In this paper, I will examine the MPQ as a communication and measurement tool that mediates patient-doctor interactions. I argue that though it may help patients find words to describe their pain, it objectifies their experiences as scientific data and enables the continued neglect, fear and stigmatization of people living with pain.

the pain scale
Doctors and researchers have devised a number of tools to not only understand a patient’s pain, but also to measure, quantify, chart, track and abstract it. An example of one such tool is the pain scale, which asks you to rate your pain. Different institutions use different vocabulary to describe the numerical range of pain intensities: from 0-10, from mild to excruciating, or from “no pain” to “worst pain imaginable”. For people living with persistent severe pain, these scales are used to track their condition over time. But can pain be reduced to a single number? And what if my “worst pain imaginable” is only your #3? Eula Biss devoted a poem to the experience of measuring her pain. She wrote: “The pain scale measures only the intensity of pain, not the duration. This may be its greatest flaw. A measure of pain, I believe, requires at least two dimensions. The suffering of Hell is terrifying not because of any specific torture but because it is eternal.” (30)

 

Fig 1: Pain Scale

In the mid-1980s, Dr. Ronald Melzack, a psychologist at McGill University, realized the failings of the pain scale. He conceived of another way to understand pain, not as a one-dimensional scale, but as a noun with qualifying adjectives. He reasoned that pain does not only vary in intensity, from “mild” to “extreme”, but also in temperature, pressure, pulse, spatiality, heat, dullness, and even in psychological qualities such as tension, fear, and punishment. Based on his initial observation of the pain scale, Dr. Melzack, along with Dr. Torgerson and other colleagues, began the development of the MPQ. The questionnaire is a form given to patients to fill out prior to an initial assessment at a pain clinic or specialist office. It lists a total of seventy-eight words separated into twenty unnamed groupings. Patients are told to make a mark next to the words that describe their pain. They can only choose one word per category. This form is meant to help patients find the precise words to communicate their pain to doctors.

the questionnaire
In his paper, “The McGill Pain Questionnaire,” Melzak describes the processes and methodologies used to develop the form. A close reading of this paper will show that patients were only marginally involved in the process of explaining their own use of language to express pain. While the study made use of patient’s words, it was empiricists who assigned meanings and numerical values. Melzack and Torgerson began the development of the questionnaire by gathering a list of forty-four words describing pain from a 1939 psychology textbook (40). They added to this list other words gathered from “clinical literature and from descriptions given by patients at hospital clinics.” (41) They arrived at a list of one-hundred-and-two words, and found that it “was a meaningless jumble.” (41) And so, they had physicians and university graduates classify them “into small groups describing distinctly different qualities of pain.” (41) The words were then organized into three major classes and sixteen subclasses. The three classes were: 1) the sensory class, which includes temporal, spatial, pressure, thermal, brightness, dullness, and other properties of pain; 2) the affective class, which describes psychological effects, such as fear, horror, or tolerance levels; 3) and the evaluative class, which is similar to a pain scale in describing the subjective intensity of the pain from mild to excruciating. These sets of sensory, affective, and evaluative classes, each containing subclasses, are compiled within the questionnaire to be presented to patients.

Following the organization of these pain descriptors, Melzak and Togerson proceeded to assign a numerical value to each word in the questionnaire. Based on a ranking system, they ranked words in each class along a numerical scale. For instance, within the “incisive pressure” subclass, the words were rated in the following order, from slightest to worst pain: 1) sharp, 2) cutting, 3) lacerating. They then devised various numerical units associated with these rankings and with the overall questionnaire: 1) The pain rating index, which assigns a numerical value to each word 2) the number of words chosen by the patient, and 3) the present pain intensity, the overall intensity rating at the time of the questionnaire, from a level of 0-no pain, to 5-excruciating. The questionnaire is meant to help doctors understand what kind of pain the patient is having, and to assign a numerical value to that pain.

When patients fill out the questionnaire, they are unaware of the various categories to which words refer or of their numerical values. Because the words on the questionnaire are adjectives and not numbers, patients remain under the impression that they are only describing their pain, not rating its numerical intensity. How could they guess that “gnawing” would indicate less pain than “crushing,” that “lacerating” would be worse than “boring,” or that psychological qualifiers—such as vicious, killing, and terrifying—would be rated higher than sensory adjectives? In the original development of the questionnaire, patients were uninvolved in the interpretation and organization of words into various subclasses with numerical rankings. When put into practice, the questionnaire similarly excludes patients’ understanding of pain while also obfuscating the way their answers will be understood by doctors. Doctors may execute medical decisions based on the numerical values assigned to words while bypassing their patients’ personal account. The “McGill Pain Questionnaire” supplements the patient’s subjective narrative with an empirical measurement of pain.

the social meaning of pain
Presumably, the “McGill Pain Questionnaire” was designed to give patients a voice to describe their suffering. Yet there is more that separates patients and doctors than a loss for words. Relationships between people living with persistent pain and their doctors exist within a social sphere of stigma, fear, and systematic oppression of the disabled. Feminist disability theorist Susan Wendell argues that our society idealizes the productive, functional body. This idealization leads to the marginalization and fear of people with disabilities. Pain is particularly feared, as it can remind us of the possibility of our own physical pain. We might even blame the person for their pain: “I may tell myself that she could have avoided it, in order to go on believing that I can avoid it.” (343) Because we cannot confront the imperfection of our own bodies, and the possibility that we too can be incapacitated through pain, we treat the disabled person as fundamentally other. Wendell continues to argue that in a medical setting, doctors fear their inability to fix the body and return it to standard functionality. They are often more focused on curing physical ailments than on understanding long-term illness and disability. Therefore, it is not only the fundamental inexpressibility and unsharable nature of pain that sets apart people with chronic pain, but also the fears they inspire in society at large.

Though the MPQ may help patients find words to describe pain in certain instances, and though it may provide reproducible numbers for clinical trials, it circumscribes the patient-doctor relationship to the goal of measuring and curing disease. It translates the patients’ symptoms into nouns with qualifying adjectives, into fixed measures and descriptors of pain. The questionnaire does not give people living with pain the space to tell their story, to describe the unique form and shape their pain can take depending on the time of day, and the many ways it affects their lives.

Despite the presence of this test in clinical settings, doctors regularly dismiss chronic pain patients. Lous Heshusius describes numerous harrowing experiences of being avoided or mistreated. Though she noted her suicidal depression on multiple questionnaires, most doctors avoided addressing it while including this information in their reports, and sharing it with other doctors. The questionnaire prescribes a fixed framework of words and values, yet does not allow for patients to explain what their pain means to them or give doctors the specific information about their condition. The questionnaire desocializes words. It takes words out of the context of the patient’s life and social situation, and transforms them into objective, numerical data for the empiricist. In a culture where people with chronic pain are routinely dismissed by doctors and socially stigmatized, this questionnaire gives answers in the form of hard data without urging doctors to examine their own prejudices towards chronic pain, or to truly consider the person in front of them.

bibliography

Biss, Eula. “The Pain Scale.” Harper’s Magazine. (June 2005): 25-30.

Heshusius, Lous. Inside Chronic Pain: An Intimate and Critical Account. Ithaca: ILR Press & Cornell University Press, 2009.

Melzack, Ronald, & Patrick D. Wall. The Challenge of Pain. 1982. Updated 2nd edition. London & New York: Penguin Group, 1996.

Melzack, Ronald. “The McGill Pain Questionnaire: Major Properties and Scoring Methods.” Pain 1 (1975): 277-299.

Melzack, Ronald. “The McGill Pain Questionnaire.” In Pain Measurement and Assessment. Ed. Ronald Melzack. New York: Ravel Press, 1983.

Wendell, Susan. “Toward a Feminist Theory of Disability.” In The Disability Studies Reader. 3rd ed. Ed. Lennard J. Davis. New York & London: Routledge, 1997.

Young, Allen. “The Anthropologies of Illness and Sickness.” Annual Review of Anthropology. 11 (1982): 257-85.

 

visual artist: emily yee clare
writer, performer: ryan kai cheng thom

Excerpted from a book in-progress, “Opium Dreams” is an interdisciplinary, multimedia exploration of Chinese diaspora, poverty, gender/racial fluidity, and queer desire. Emily Yun Ching Clare combines stencils of contemporary Chinese North Americans with hand-drawn motifs drawn from classic Chinese folklore, highlighting the contrast between the difficult realities of migration and the mythic power of the imagined homeland. Clare’s portraits infuse the monolithic, mainstream narrative of Chinese diaspora with shades of individuality, re-imagining the migrant geographies of past and present, spirit and body. Ryan Kai Cheng Thom’s spoken word performances blend drag, comedy, and slam poetry, lending a unique narrative voice to the idiosyncrasies of growing up as a queer person of colour. His work seeks to embody the dynamics of celebration, survival, and intimate violence in the queer community.

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