Auswahl der wissenschaftlichen Literatur zum Thema „Hommes handicapés“

Quinze ans après son adoption par l’Assemblée générale des Nations unies, dix ans après sa ratification, l’appropriation par la France de la Convention internationale pour les droits des personnes handicapées (CIDPH) est jugée sévèrement par les instances onusiennes. Cette sévérité se fonde non pas tant sur la question de l’application d’une norme internationale que sur celle du « modèle du handicap basé sur les droits de l’homme ». À travers la notion de domestication et son emploi pour analyser l’influence de l’article 12 de la CIDPH dans le contexte français, cet article se propose d’éclairer les conditions sociales et institutionnelles des changements de représentation des droits des personnes handicapées. Il montrera la portée et les limites de la domestication de l’article 12 à partir de l’exemple de l’universalisation du droit de vote à toutes les personnes handicapées et les réticences à transformer des normes juridiques comme celles des tutelles/curatelles et du soin sans consentement.

RESUMENEl nacimiento en la Antigua Roma de niños con rasgos sexuales masculinos y femeninos a la vez, los llamados andróginos o hermafroditas, eran considerados como un gravísimo prodigio. Su expiación, necesaria para el restablecimiento de las buenas relaciones entre los hombres y los dioses, quedó en manos exclusivamente de mujeres: ancianas, matronas y virgines.PALABRAS CLAVE: Antigua Roma, Matrona, prodigio, expiación, andróginoABSTRACTThe birth in ancient Rome of children with both male and female sexual features, so-called androgynes or hermaphrodites, was regarded as a an extraordinary phenomenon. Their expiation, necessary for the restoration of good relations between men and gods, remained exclusively in the hands of women: old women, midwives and virgines.KEY WORDS: Ancient Rome, midwife, prodigy, expiation, androgynus BIBLIOGRAFÍAAbaecherly Boyce, A. (1937), “The expiatory rites of 207 B. C.”, TAPhA, 68, 157-171.Allély, A. 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Zamora (a cura di), Gli operatori cultuali, Atti del II Incontro di studio organizzato dal “Gruppo di contatto per lo studio delle religioni mediterranee” (Roma, 10 - 11 maggio 2005), Verona, Essedue.Trentin, L. (2011), “Deformity in the Roman Imperial Court”, G&R, II S., 58, 195-208.Vallar, S. (2013), “Les hermaphrodites l’approche de la Rome antique”, RIDA, 60, 201-217.

The paper presents research findings with 56 Roma children from Macedonia and Serbia between the ages of 3-6 years. The children’s knowledge of Romani as their mother tongue was assessed with a specially designed test. The test measures the children’s comprehension and production of different types of grammatical knowledge such as wh–questions, wh-complements, passive verbs, possessives, tense, aspect, the ability of the children to learn new nouns and new adjectives, and repetition of sentences. In addition, two pictured narratives about Theory of Mind were given to the children. The hypothesis of the authors was that knowledge of the complex grammatical categories by children will help them to understand better the Theory of Mind stories. The results show that Roma children by the age of 5 know most of the grammatical categories in their mother tongue and most of them understand Theory of Mind. References Bakalar, P. (2004). The IQ of Gypsies in Central Europe. 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Objetivo: Este estudo visa a apresentar um Programa de Reabilitação Auditiva voltado aos idosos, usuários de próteses auditivas, caracterizando a população atendida neste programa quanto ao tipo e grau de perda auditiva, idade de início da terapia, tempo de protetização e escolaridade, além de avaliar as mudanças na autopercepção de restrição de participação, após tal intervenção terapêutica. Método: Trata-se de uma pesquisa descritiva e qualitativa. Elaborou-se um Programa de Reabilitação Auditiva, com 12 sessões individuais de atendimento fonoaudiológico voltado ao público da terceira idade e fizeram parte da amostra dez idosos usuários de prótese auditiva bilateral. Para avaliar as mudanças na autopercepção da restrição de participação, utilizou-se o questionário Hearing Handicap Inventory for the Elderly – Screening (HHIE-S) em dois momentos distintos, pré e pós-participação, em tal programa. Resultados: Da caracterização da população, observou-se que a maioria tem baixo nível de escolaridade e, na sua maioria, é composta por homens e média de 77 anos de idade no início da terapia de reabilitação auditiva. A autopercepção de restrição de participação dos idosos diminuiu após treinamento auditivo, mostrando que tal intervenção trouxe benefícios a suas vidas. Conclusão: O estudo mostrou que programas de reabilitação auditiva podem acarretar melhora na qualidade de vida da população da terceira idade.

Perhaps nothing in media culture today makes clearer the connection between people’s bodies and their homes than the Emmy-winning reality TV program Extreme Makeover: Home Edition. Home Edition is a spin-off from the original Extreme Makeover, and that fact provides in fundamental form the strong connection that the show demonstrates between bodies and houses. The first EM, initially popular for its focus on cosmetic surgery, laser skin and hair treatments, dental work, cosmetics and wardrobe for mainly middle-aged and self-described unattractive participants, lagged after two full seasons and was finally cancelled entirely, whereas EMHE has continued to accrue viewers and sponsors, as well as accolades (Paulsen, Poniewozik, EMHE Website, Wilhelm). That viewers and the ABC network shifted their attention to the reconstruction of houses over the original version’s direct intervention in problematic bodies indicates that sites of personal transformation are not necessarily within our own physical or emotional beings, but in the larger surround of our environments and in our cultural ideals of home and body. One effect of this shift in the Extreme Makeover format is that a seemingly wider range of narrative problems can be solved relating to houses than to the particular bodies featured on the original show. Although Extreme Makeover featured a few people who’d had previously botched cleft palate surgeries or mastectomies, as Cressida Heyes points out, “the only kind of disability that interests the show is one that can be corrected to conform to able-bodied norms” (22). Most of the recipients were simply middle-aged folks who were ordinary or aged in appearance; many of them seemed self-obsessed and vain, and their children often seemed disturbed by the transformation (Heyes 24). However, children are happy to have a brand new TV and a toy-filled room decorated like their latest fantasy, and they thereby can be drawn into the process of identity transformation in the Home Edition version; in fact, children are required of virtually all recipients of the show’s largess. Because EMHE can do “major surgery” or simply bulldoze an old structure and start with a new building, it is also able to incorporate more variety in its stories—floods, fires, hurricanes, propane explosions, war, crime, immigration, car accidents, unscrupulous contractors, insurance problems, terrorist attacks—the list of traumas is seemingly endless. Home Edition can solve any problem, small or large. Houses are much easier things to repair or reconstruct than bodies. Perhaps partly for this reason, EMHE uses disability as one of its major tropes. Until Season 4, Episode 22, 46.9 percent of the episodes have had some content related to disability or illness of a disabling sort, and this number rises to 76.4 percent if the count includes families that have been traumatised by the (usually recent) death of a family member in childhood or the prime of life by illness, accident or violence. Considering that the percentage of people living with disabilities in the U.S. is defined at 18.1 percent (Steinmetz), EMHE obviously favours them considerably in the selection process. Even the disproportionate numbers of people with disabilities living in poverty and who therefore might be more likely to need help—20.9 percent as opposed to 7.7 percent of the able-bodied population (Steinmetz)—does not fully explain their dominance on the program. In fact, the program seeks out people with new and different physical disabilities and illnesses, sending out emails to local news stations looking for “Extraordinary Mom / Dad recently diagnosed with ALS,” “Family who has a child with PROGERIA (aka ‘little old man’s disease’)” and other particular situations (Simonian). A total of sixty-five ill or disabled people have been featured on the show over the past four years, and, even if one considers its methods maudlin or exploitive, the presence of that much disability and illness is very unusual for reality TV and for TV in general. What the show purports to do is to radically transform multiple aspects of individuals’ lives—and especially lives marred by what are perceived as physical setbacks—via the provision of a luxurious new house, albeit sometimes with the addition of automobiles, mortgage payments or college scholarships. In some ways the assumptions underpinning EMHE fit with a social constructionist body theory that posits an almost infinitely flexible physical matter, of which the definitions and capabilities are largely determined by social concepts and institutions. The social model within the disability studies field has used this theoretical perspective to emphasise the distinction between an impairment, “the physical fact of lacking an arm or a leg,” and disability, “the social process that turns an impairment into a negative by creating barriers to access” (Davis, Bending 12). Accessible housing has certainly been one emphasis of disability rights activists, and many of them have focused on how “design conceptions, in relation to floor plans and allocation of functions to specific spaces, do not conceive of impairment, disease and illness as part of domestic habitation or being” (Imrie 91). In this regard, EMHE appears as a paragon. In one of its most challenging and dramatic Season 1 episodes, the “Design Team” worked on the home of the Ziteks, whose twenty-two-year-old son had been restricted to a sub-floor of the three-level structure since a car accident had paralyzed him. The show refitted the house with an elevator, roll-in bathroom and shower, and wheelchair-accessible doors. Robert Zitek was also provided with sophisticated computer equipment that would help him produce music, a life-long interest that had been halted by his upper-vertebra paralysis. Such examples abound in the new EMHE houses, which have been constructed for families featuring situations such as both blind and deaf members, a child prone to bone breaks due to osteogenesis imperfecta, legs lost in Iraq warfare, allergies that make mold life-threatening, sun sensitivity due to melanoma or polymorphic light eruption or migraines, fragile immune systems (often due to organ transplants or chemotherapy), cerebral palsy, multiple sclerosis, Krabbe disease and autism. EMHE tries to set these lives right via the latest in technology and treatment—computer communication software and hardware, lock systems, wheelchair-friendly design, ventilation and air purification set-ups, the latest in care and mental health approaches for various disabilities and occasional consultations with disabled celebrities like Marlee Matlin. Even when individuals or familes are “[d]iscriminated against on a daily basis by ignorance and physical challenges,” as the program website notes, they “deserve to have a home that doesn’t discriminate against them” (EMHE website, Season 3, Episode 4). The relief that they will be able to inhabit accessible and pleasant environments is evident on the faces of many of these recipients. That physical ease, that ability to move and perform the intimate acts of domestic life, seems according to the show’s narrative to be the most basic element of home. Nonetheless, as Robert Imrie has pointed out, superficial accessibility may still veil “a static, singular conception of the body” (201) that prevents broader change in attitudes about people with disabilities, their activities and their spaces. Starting with the story of the child singing in an attempt at self-comforting from Deleuze and Guattari’s A Thousand Plateaus, J. MacGregor Wise defines home as a process of territorialisation through specific behaviours. “The markers of home … are not simply inanimate objects (a place with stuff),” he notes, “but the presence, habits, and effects of spouses, children, parents, and companions” (299). While Ty Pennington, EMHE’s boisterous host, implies changes for these families along the lines of access to higher education, creative possibilities provided by musical instruments and disability-appropriate art materials, help with home businesses in the way of equipment and licenses and so on, the families’ identity-producing habits are just as likely to be significantly changed by the structural and decorative arrangements made for them by the Design Team. The homes that are created for these families are highly conventional in their structure, layout, decoration, and expectations of use. More specifically, certain behavioural patterns are encouraged and others discouraged by the Design Team’s assumptions. Several themes run through the show’s episodes: Large dining rooms provide for the most common of Pennington’s comments: “You can finally sit down and eat meals together as a family.” A nostalgic value in an era where most families have schedules full of conflicts that prevent such Ozzie-and-Harriet scenarios, it nonetheless predominates. Large kitchens allow for cooking and eating at home, though featured food is usually frozen and instant. In addition, kitchens are not designed for the families’ disabled members; for wheelchair users, for instance, counters need to be lower than usual with open space underneath, so that a wheelchair can roll underneath the counter. Thus, all the wheelchair inhabitants depicted will still be dependent on family members, primarily mothers, to prepare food and clean up after them. (See Imrie, 95-96, for examples of adapted kitchens.) Pets, perhaps because they are inherently “dirty,” are downplayed or absent, even when the family has them when EMHE arrives (except one family that is featured for their animal rescue efforts); interestingly, there are no service dogs, which might obviate the need for some of the high-tech solutions for the disabled offered by the show. The previous example is one element of an emphasis on clutter-free cleanliness and tastefulness combined with a rampant consumerism. While “cultural” elements may be salvaged from exotic immigrant families, most of the houses are very similar and assume a certain kind of commodified style based on new furniture (not humble family hand-me-downs), appliances, toys and expensive, prefab yard gear. Sears is a sponsor of the program, and shopping trips for furniture and appliances form a regular part of the program. Most or all of the houses have large garages, and the families are often given large vehicles by Ford, maintaining a positive take on a reliance on private transportation and gas-guzzling vehicles, but rarely handicap-adapted vans. Living spaces are open, with high ceilings and arches rather than doorways, so that family members will have visual and aural contact. Bedrooms are by contrast presented as private domains of retreat, especially for parents who have demanding (often ill or disabled) children, from which they are considered to need an occasional break. All living and bedrooms are dominated by TVs and other electronica, sometimes presented as an aid to the disabled, but also dominating to the point of excluding other ways of being and interacting. As already mentioned, childless couples and elderly people without children are completely absent. Friends buying houses together and gay couples are also not represented. The ideal of the heterosexual nuclear family is thus perpetuated, even though some of the show’s craftspeople are gay. Likewise, even though “independence” is mentioned frequently in the context of families with disabled members, there are no recipients who are disabled adults living on their own without family caretakers. “Independence” is spoken of mostly in terms of bathing, dressing, using the bathroom and other bodily aspects of life, not in terms of work, friendship, community or self-concept. Perhaps most salient, the EMHE houses are usually created as though nothing about the family will ever again change. While a few of the projects have featured terminally ill parents seeking to leave their children secure after their death, for the most part the families are considered oddly in stasis. Single mothers will stay single mothers, even children with conditions with severe prognoses will continue to live, the five-year-old will sleep forever in a fire-truck bed or dollhouse room, the occasional grandparent installed in his or her own suite will never pass away, and teenagers and young adults (especially the disabled) will never grow up, marry, discover their homosexuality, have a falling out with their parents or leave home. A kind of timeless nostalgia, hearkening back to Gaston Bachelard’s The Poetics of Space, pervades the show. Like the body-modifying Extreme Makeover, the Home Edition version is haunted by the issue of normalisation. The word ‘normal’, in fact, floats through the program’s dialogue frequently, and it is made clear that the goal of the show is to restore, as much as possible, a somewhat glamourised, but status quo existence. The website, in describing the work of one deserving couple notes that “Camp Barnabas is a non-profit organisation that caters to the needs of critically and chronically ill children and gives them the opportunity to be ‘normal’ for one week” (EMHE website, Season 3, Episode 7). Someone at the network is sophisticated enough to put ‘normal’ in quotation marks, and the show demonstrates a relatively inclusive concept of ‘normal’, but the word dominates the show itself, and the concept remains largely unquestioned (See Canguilhem; Davis, Enforcing Normalcy; and Snyder and Mitchell, Narrative, for critiques of the process of normalization in regard to disability). In EMHE there is no sense that disability or illness ever produces anything positive, even though the show also notes repeatedly the inspirational attitudes that people have developed through their disability and illness experiences. Similarly, there is no sense that a little messiness can be creatively productive or even necessary. Wise makes a distinction between “home and the home, home and house, home and domus,” the latter of each pair being normative concepts, whereas the former “is a space of comfort (a never-ending process)” antithetical to oppressive norms, such as the association of the home with the enforced domesticity of women. In cases where the house or domus becomes a place of violence and discomfort, home becomes the process of coping with or resisting the negative aspects of the place (300). Certainly the disabled have experienced this in inaccessible homes, but they may also come to experience a different version in a new EMHE house. For, as Wise puts it, “home can also mean a process of rationalization or submission, a break with the reality of the situation, self-delusion, or falling under the delusion of others” (300). The show’s assumption that the construction of these new houses will to a great extent solve these families’ problems (and that disability itself is the problem, not the failure of our culture to accommodate its many forms) may in fact be a delusional spell under which the recipient families fall. In fact, the show demonstrates a triumphalist narrative prevalent today, in which individual happenstance and extreme circumstances are given responsibility for social ills. In this regard, EMHE acts out an ancient morality play, where the recipients of the show’s largesse are assessed and judged based on what they “deserve,” and the opening of each show, when the Design Team reviews the application video tape of the family, strongly emphasises what good people these are (they work with charities, they love each other, they help out their neighbours) and how their situation is caused by natural disaster, act of God or undeserved tragedy, not their own bad behaviour. Disabilities are viewed as terrible tragedies that befall the young and innocent—there is no lung cancer or emphysema from a former smoking habit, and the recipients paralyzed by gunshots have received them in drive-by shootings or in the line of duty as police officers and soldiers. In addition, one of the functions of large families is that the children veil any selfish motivation the adults may have—they are always seeking the show’s assistance on behalf of the children, not themselves. While the Design Team always notes that there are “so many other deserving people out there,” the implication is that some people’s poverty and need may be their own fault. (See Snyder and Mitchell, Locations 41-67; Blunt and Dowling 116-25; and Holliday.) In addition, the structure of the show—with the opening view of the family’s undeserved problems, their joyous greeting at the arrival of the Team, their departure for the first vacation they may ever have had and then the final exuberance when they return to the new house—creates a sense of complete, almost religious salvation. Such narratives fail to point out social support systems that fail large numbers of people who live in poverty and who struggle with issues of accessibility in terms of not only domestic spaces, but public buildings, educational opportunities and social acceptance. In this way, it echoes elements of the medical model, long criticised in disability studies, where each and every disabled body is conceptualised as a site of individual aberration in need of correction, not as something disabled by an ableist society. In fact, “the house does not shelter us from cosmic forces; at most it filters and selects them” (Deleuze and Guattari, What Is Philosophy?, qtd. in Frichot 61), and those outside forces will still apply to all these families. The normative assumptions inherent in the houses may also become oppressive in spite of their being accessible in a technical sense (a thing necessary but perhaps not sufficient for a sense of home). As Tobin Siebers points out, “[t]he debate in architecture has so far focused more on the fundamental problem of whether buildings and landscapes should be universally accessible than on the aesthetic symbolism by which the built environment mirrors its potential inhabitants” (“Culture” 183). Siebers argues that the Jamesonian “political unconscious” is a “social imaginary” based on a concept of perfection (186) that “enforces a mutual identification between forms of appearance, whether organic, aesthetic, or architectural, and ideal images of the body politic” (185). Able-bodied people are fearful of the disabled’s incurability and refusal of normalisation, and do not accept the statistical fact that, at least through the process of aging, most people will end up dependent, ill and/or disabled at some point in life. Mainstream society “prefers to think of people with disabilities as a small population, a stable population, that nevertheless makes enormous claims on the resources of everyone else” (“Theory” 742). Siebers notes that the use of euphemism and strategies of covering eventually harm efforts to create a society that is home to able-bodied and disabled alike (“Theory” 747) and calls for an exploration of “new modes of beauty that attack aesthetic and political standards that insist on uniformity, balance, hygiene, and formal integrity” (Culture 210). What such an architecture, particularly of an actually livable domestic nature, might look like is an open question, though there are already some examples of people trying to reframe many of the assumptions about housing design. For instance, cohousing, where families and individuals share communal space, yet have private accommodations, too, makes available a larger social group than the nuclear family for social and caretaking activities (Blunt and Dowling, 262-65). But how does one define a beauty-less aesthetic or a pleasant home that is not hygienic? Post-structuralist architects, working on different grounds and usually in a highly theoretical, imaginary framework, however, may offer another clue, as they have also tried to ‘liberate’ architecture from the nostalgic dictates of the aesthetic. Ironically, one of the most famous of these, Peter Eisenman, is well known for producing, in a strange reversal, buildings that render the able-bodied uncomfortable and even sometimes ill (see, in particular, Frank and Eisenman). Of several house designs he produced over the years, Eisenman notes that his intention was to dislocate the house from that comforting metaphysic and symbolism of shelter in order to initiate a search for those possibilities of dwelling that may have been repressed by that metaphysic. The house may once have been a true locus and symbol of nurturing shelter, but in a world of irresolvable anxiety, the meaning and form of shelter must be different. (Eisenman 172) Although Eisenman’s starting point is very different from that of Siebers, it nonetheless resonates with the latter’s desire for an aesthetic that incorporates the “ragged edge” of disabled bodies. Yet few would want to live in a home made less attractive or less comfortable, and the “illusion” of permanence is one of the things that provide rest within our homes. Could there be an architecture, or an aesthetic, of home that could create a new and different kind of comfort and beauty, one that is neither based on a denial of the importance of bodily comfort and pleasure nor based on an oppressively narrow and commercialised set of aesthetic values that implicitly value some people over others? For one thing, instead of viewing home as a place of (false) stasis and permanence, we might see it as a place of continual change and renewal, which any home always becomes in practice anyway. As architect Hélène Frichot suggests, “we must look toward the immanent conditions of architecture, the processes it employs, the serial deformations of its built forms, together with our quotidian spatio-temporal practices” (63) instead of settling into a deadening nostalgia like that seen on EMHE. If we define home as a process of continual territorialisation, if we understand that “[t]here is no fixed self, only the process of looking for one,” and likewise that “there is no home, only the process of forming one” (Wise 303), perhaps we can begin to imagine a different, yet lovely conception of “house” and its relation to the experience of “home.” Extreme Makeover: Home Edition should be lauded for its attempts to include families of a wide variety of ethnic and racial backgrounds, various religions, from different regions around the U.S., both rural and suburban, even occasionally urban, and especially for its bringing to the fore how, indeed, structures can be as disabling as any individual impairment. That it shows designers and builders working with the families of the disabled to create accessible homes may help to change wider attitudes and break down resistance to the building of inclusive housing. However, it so far has missed the opportunity to help viewers think about the ways that our ideal homes may conflict with our constantly evolving social needs and bodily realities. References Bachelard, Gaston. The Poetics of Space. Tr. Maria Jolas. Boston: Beacon Press, 1969. Blunt, Alison, and Robyn Dowling. Home. London and New York: Routledge, 2006. Canguilhem, Georges. The Normal and the Pathological. New York: Zone Books, 1991. Davis, Lennard. Bending Over Backwards: Disability, Dismodernism & Other Difficult Positions. New York: NYUP, 2002. ———. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso, 1995. Deleuze, Gilles, and Felix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. Tr. B. Massumi. Minneapolis: University of Minnesota Press, 1987. ———. What Is Philosophy? Tr. G. Burchell and H. Tomlinson. London and New York: Verso, 1994. Eisenman, Peter Eisenman. “Misreading” in House of Cards. 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Macgregor. “Home: Territory and Identity.” Cultural Studies 14.2 (2000): 295-310. Citation reference for this article MLA Style Roney, Lisa. "The Extreme Connection Between Bodies and Houses." M/C Journal 10.4 (2007). echo date('d M. Y'); ?> <http://journal.media-culture.org.au/0708/03-roney.php>. APA Style Roney, L. (Aug. 2007) "The Extreme Connection Between Bodies and Houses," M/C Journal, 10(4). Retrieved echo date('d M. Y'); ?> from <http://journal.media-culture.org.au/0708/03-roney.php>.

De 1988 à 1992, un garçon et une fille atteints de déficiences motrices ont intégré le cursus de l'U. F. R. S. T. A. P. S. De Nancy. Le garçon ne pratiquait que la natation, alors que la fille pouvait participer à presque toutes les activités sportives du cursus. Les effets de ces intégrations ont été étudiés sur deux populations: les étudiants valides inscrits dans l'établissement pendant les quatre années, et les enseignants de l'institution. Les conséquences de ces présences sont différentes. Les étudiants valides ont été interrogés par questionnaire. Un traitement statistique a permis de mettre en évidence les effets de plusieurs variables: la pratique sportive des étudiants valides avec les étudiants handicapés a eu un rôle certain dans l'appréciation des deux intégrations, comme la variable fille-garçon. Le temps passé avec l'un ou l'autre a eu aussi une action déterminante sur les effets de ces intégrations. Concernant les enseignants, l'étude des effets des deux intégrations a été réalisée à partir d'entretiens. Une analyse de contenu a dégagé plusieurs conclusions. La présence de la fille (atteinte d'une déficience motrice légère) a été ressentie très positivement. L'intégration du garçon (touché par une déficience motrice lourde) a été très mal vécue par les enseignants. Plusieurs éléments expliquent ces réactions. La lourdeur de la déficience de l'étudiant a empêché presque tous les enseignants de l'inclure dans leurs pratiques sportives. Les adaptations mises en place pour lui n'ont pas reçu l'approbation de tous les enseignants. Aucune dynamique collective n'a été engagée pour améliorer la situation, ni aucune discussion entre les enseignants une fois que l'étudiant handicapé était dans le cursus. La conséquence est que très peu d'enseignants souhaitent renouveler la présence d'un étudiant ayant une déficience lourde, mais sont prêts à accueillir dans le cursus des déficiences légères