Our "Rare" Children Deserve Better
Mothers of Children with Rare Diseases Speak Out
Mots-clés :
enfants rares, équité pour le handicap, études critiques du handicap, maladies rares, maladies génétiques, syndrome de Pitt-Hopkins, Chromosome 18qRésumé
« Difficile, stressante, frustrante… pas la maladie, ni les personnes qui en sont atteintes, mais bien notre société capacitiste. »
En me référant à mes discussions avec six mères d’enfants atteints de maladies rares, j’utilise une approche critique du handicap et prends une perspective intersectionnelle afin d’explorer les limites des services communautaires et de la santé destinés à ces enfants, ainsi que l’impact de ces limites sur la santé mentale des parents concernés. Dans cet article, j’attire l’attention sur les difficultés et les combats que mènent les parents pour accéder aux ressources et aux services communautaires et de la santé pour leurs enfants atteints de maladies rares. Ces difficultés sont amplifiées lorsque les parents tentent de promouvoir leurs reconnaissances, leurs acceptations et leurs inclusions dans la société. Du premier diagnostic aux interactions avec les services de la santé et les autres soutiens disponibles, les effets d’une maladie « rare » bouleversent profondément la vie des familles concernées. L’objectif de cette étude est de sensibiliser le public aux maladies rares, en particulier la délétion du chromosome 18q et le syndrome de Pitt-Hopkins. Étant moi-même parent d’un enfant atteint d’une maladie rare, j’expose les difficultés que rencontrent les familles comme la mienne et révèle la structure profondément capacitiste ancrée dans notre société, tout en examinant les implications pour les futures pratiques du milieu du travail social. Nos enfants « rares » méritent mieux.
Téléchargements
Publié-e
Comment citer
Numéro
Rubrique
Licence
1-The author guarantees that the manuscript is an original work not published elsewhere in print or electronically in whole or in part, except in abstract form, that the author has the full power to make this contribution, and that the manuscript contains no matter libelous or otherwise unlawful or which invades the right of privacy or which infringes any proprietary right.
2-The author guarantees that the manuscript has not been previously published in print or electronically and that if the manuscript contains any tables, figures or images fully reproduced or closely adapted from previously published material, the author must obtain the necessary permission from the author/publisher holding the original copyright prior to publication in CRSP. The author may be required to produce evidence of permission granted to CRSP’s editors.
3-As a condition of publication in CRSP, the author assigns all copyright to CRSP, including but not limited to the right to publish, republish, and otherwise distribute this manuscript in print, electronic, or other formats. As CRSP is a non-profit interdisciplinary scholarly journal, the author will receive no royalty or other monetary compensation for the assignment set forth in this agreement.
For the purpose of full disclosure, CRSP will not normally use the content provided by the author in a commercial venture, but for the purpose of disseminating the author’s content to as many readers as possible. For distribution, third parties engaging in commercial activities may be contracted to distribute the content globally, and such parties may make a profit out of the author’s content in their normal course of business. CRSP will not pay the author or reimburse the author in any form based on such commercial activities because the conduct of such commercial activities is outside the control of CRSP.
Any future reference to or use of this published material by the authors must acknowledge CRSP as the original place of publication.
PERMISSION REQUEST/ARCHIVING
Permission is given to author(s) receiving funding via Tri-Council Agencies, the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council of Canada (NSERC) and the Social Sciences and Humanities Research Council (SSHRC), to make their publications freely available in an Open Access repository within the stated deadline by the Tri-Council Agencies (12 months following publication). Archiving of publication must be a manuscript copy bearing none of the CRSP headers, footers or any other distinguishing marks. No links to the article on the CRSP website is permitted.
Permission requests from third parties to reproduce articles in part or full in academic/educational publications can be directed to the managing editor of CRSP, and will not be unreasonably denied.
