The Swedish Act concerning Support and Service for Persons with Certain Functional Impairments (known as LSS) is said to hold strong rights regarding support intended to empower people with severe disabilities. This study investigates to which extent children are attributed rights in the preparatory work for the LSS and in the administrative court’s judgments. Using qualitative content analysis, this study finds that there is a strong disa-bility rights perspective in the preparatory work but a general ambiguity concerning whether the perspective covers children. The absence of a disability rights perspective in court records concerning children can be under-stood in light of this ambiguity. Other findings include a strong parent perspective and an absent or weak chil-dren's rights perspective in both the preparatory work and court judgments. Children are seldom given a voice or made visible as social actors with rights of their own. Instead, children are described as family members and the care responsibilities of parents – who, in turn, have a voice and are seen as in need of support. The thesis con-cludes that there is a need to clarify the rights of the child in the LSS and how these should be prioritized against parents' interests.

Le test génomique prénatal non invasif (TGPNI) est un test présentement offert au Canada, dans le cadre de programmes provinciaux de dépistage prénatal des aneuploïdies, comme test de seconde intention. Il est également disponible au privé comme test de 1ère intention et/ou pour un nombre étendu de conditions génétiques. Ce projet visait à d’identifier les enjeux soulevés par l’offre du TGPNI en 1ère intention et du TGPNI pour un nombre étendu de conditions, selon des associations canadiennes représentant des gens avec des conditions génétiques ciblées par le TGPNI. Des entrevues semi-structurées ont été réalisées avec des représentants de douze associations régionales, provinciales et nationales. Les entrevues furent transcrites puis analysées par analyse thématique. Les associations ont relevé tant des éléments positifs que négatifs. D’un côté, elles perçoivent comme problématique l’accès privé au TGPNI en 1ère intention ou étendu, puisqu’il entraîne une inégalité d’accès à l’information sur le foetus. Par contre, les associations craignent que l’offre du TGPNI, mais surtout une possible routinisation de l’offre tu test, puisse avoir un impact sur la vision sociétale des conditions ciblées. Elles soulignent qu’il est important de considérer les impacts potentiels du TGPNI, dont le risque de discrimination. Les associations sont critiques de l’information véhiculée lors de la discussion des tests et pensent pouvoir jouer un rôle pour améliorer l’information donnée aux personnes enceintes. Ces résultats réitérent l’importance de prendre en considération les perspectives des différentes parties prenantes lors de la prise de décisions de politiques de santé. / Non-invasive prenatal genomic testing (NIPT) is a test that is currently available in Canada as a second-tier test in provincial prenatal aneuploidy screening programs. It is also available privately as a first-tier test and/or offered for a wide range of genetic conditions. The purpose of this project was to identify the issues raised by the availability of NIPT as a first-tier test and NIPT for a wide range of conditions, according to Canadian associations representing people with genetic conditions targeted by NIPT. Semi-structured interviews were conducted with representatives from twelve regional, provincial and national associations. The interviews were transcribed and analyzed by thematic analysis. The associations identified both positive and negative elements. They perceived private first-tier and expanded access to NIPT as problematic, as it results in unequal access to fetal information. On the other hand, the associations were concerned about a possible routinization of NIPT and about the message sent by the offer of NIPT regarding the societal perception of the targeted conditions. They stressed the importance of considering the potential impacts of NIPT, including the risk of discrimination. The associations are uncertain regarding what type of information ought to be communicated during the discussion of the tests and believe they can play a role in improving the information provided to pregnant people. These results highlight the importance of considering the perspectives of different stakeholders when making health policy decisions.

Cosupervision / Le test génomique prénatal non invasif (TGPNI) est un test de dépistage prénatal offert pour détecter certaines anomalies chromosomiques chez le fœtus, telles que les trisomies 21, 18 et 13. Au Canada, la disponibilité et l’offre du TGPNI varient d’une province et d'un territoire à l'autre mais sont surtout en deuxième intention. Cette étude qualitative a consisté en des entretiens approfondis avec onze personnes vivant avec ou côtoyant une condition génétique actuellement ou potentiellement détectée par le TGPNI, pour explorer leurs perspectives quant à la proposition d’implanter ce test en 1re intention, et d’en étendre la portée vers la détection d’autres conditions génétiques. L’analyse a révélé que, bien que certains individus apprécient un résultat précoce grâce au TGPNI, ils considèrent généralement le dépistage prénatal comme une voie prédéterminée vers l’interruption de grossesse. Cette corrélation était liée à leur expérience personnelle du dépistage et à celle de leur communauté, où de nombreuses pressions sont subies en cas d’anomalie fœtale. Les parents estiment que l'attente sociale envers l'interruption de grossesse reflète les attitudes négatives de la société à l'égard des personnes génétiquement différentes, craignant que l’offre étendue et plus accessible du TGPNI n’accentue la pente glissante vers des tendances eugéniques dans la société. L’expansion de la portée du test pourrait être bénéfique dans le cas de conditions génétiques jugées sévères sur la base des critères de viabilité et de qualité de vie. Cependant, les personnes côtoyant des anomalies des chromosomes sexuels (ACS) ont également soutenu l'utilisation du TGPNI pour la détection des ACS, afin de permettre une meilleure préparation prénatale, ce à quoi les parents d'enfants vivant avec la trisomie 21 étaient plus réticents. Les parents ont rétrospectivement contrasté ces attitudes avec la réalité d’élever un enfant vivant avec une condition génétique, qu'ils décrivent comme une expérience pleine de défis mais hautement enrichissante. Bien que les participant.e.s apprécient le TGPNI en tant qu’outil d'information favorisant l’autonomie reproductive, ils et elles estiment qu'il devrait être accompagné d'informations équilibrées, transparentes et exemptes de biais. Ces résultats réitèrent l’importance de consulter les personnes vivant au cœur de ces enjeux, afin d’ajouter leurs perspectives aux voix des autres parties prenantes dans la prise de décision en matière de santé, en maintenant l'autonomie reproductive et la protection des droits des personnes vulnérables sont placées à l’avant-plan des considérations. / Non-invasive prenatal genomic testing (NIPT) is a prenatal screening test offered to detect certain chromosomal abnormalities in the fetus, such as trisomies 21, 18 and 13. In Canada, the availability and offr of NIPT varies among the provinces and territories but is mainly second-tier. This qualitative study involved in-depth interviews with eleven people living with a genetic condition currently or potentially detected by NIPT, to explore their opinion regarding its potential implementation as first- tier testing, and to extend its scope to the detection of other genetic conditions. The analysis revealed that, although some individuals appreciated an early result with NIPT, they generally considered prenatal screening as a predetermined route to termination of pregnancy. This correlation was linked to their personal experience of screening and that of their community, where there is a great amount of pressure in the case of a fetal anomaly. Parents felt that the social expectation to terminate a pregnancy reflected society’s negative attitudes towards people who are genetically different, fearing that the expanded and more accessible offer of NIPT would accentuate the slippery slope towards eugenic tendencies in society. Thus, the expansion of the test’s scope could be beneficial only in the case of genetic conditions deemed severe on the basis of viability and quality-of-life criteria. However, people living with sex chromosome anomalies (SCAs) also supported the use of NIPT for the detection of SCAs, to enable better prenatal preparation, something to which parents of children living with trisomy 21 were more reluctant. In retrospect, parents contrasted these attitudes with the reality of raising a child living with a genetic condition, which they described as a challenging but highly rewarding experience. While participants appreciated the TGPNI as an information tool promoting reproductive autonomy, they felt that it should be accompanied by balanced, transparent and bias-free information. These results reiterate the importance of consulting people living at the heart of these issues, in order to add their perspectives to the voices of other stakeholders in healthcare decision-making, keeping reproductive autonomy and the protection of vulnerable people’s rights at the forefront of considerations.

No description available.

網路是現代人「與外界接觸」不可或缺的重要工具，但在這個明眼人居多且多數人皆透過視覺學習與理解事物的世界，許多網站或系統之設計完全未考慮視障者能否使用，當網路對人們的重要性高到不可忽視的地步，甚至網路近用開始牽涉基本權行使和生存資源與機會的分配時，若明眼人皆得以合法近用網路，則基於平等與禁止歧視原則，視障者理應得到相同對待，網站或系統經營者應使其設計滿足「網路無障礙」之要求。而滿足「網路無障礙」之要求需要成本，僅係「鼓勵」難使所有公司、業者皆將「身障數位權利」放在心上並身體力行「網路無障礙」，因此，合理而適當之法律強制規定乃為必需。然而，我國目前雖設有無障礙網站之認證制度，相關法制規範卻未完善，進而導致認證制度之推廣狀況不佳。 目前國內外有關「網路無障礙」之法制相關研究並不多，且也少有回應現代網路實際發展狀況，或從視障者需求出發而為討論，因此本研究希望透過「視障者接觸外界之行為分析」與「網路發展歷程」，構築一個完整的「網路無障礙法制」之討論框架，本研究將視障者網路近用不能之權益侵害歸納為「侵害視障者平等接觸資訊之權利」、「侵害視障者平等接觸著作之權利」與「侵害視障者平等進出或使用（虛擬）空間與設施之權利」。第三章討論視障者「接觸資訊」之權利，雖然現今網路的功能五花八門，但「接觸資訊」仍為其中重要之一環，且許多網路無障礙相關的重要法規皆係以保障「接觸資訊」之權利為基礎，例如：美國二十一世紀通訊與視訊接取無障礙法，此外，著作也是資訊的一種，不同的是著作受到著作權法保護，因此本章也介紹國內外保障視障者接觸著作（尤其數位著作）之法理與法規；第四章則討論視障者「使用網路空間與設施」之權利，這樣的切入點和前兩者不同處在於，其並非以「功能性」之方式針對特定項目而為保障，而是以更加宏觀的角度看待網路，將網路視為能自由進出的「空間」或能使人們達成特定目的的「設施」，目前以這樣觀點而為網路無障礙保障之法規，僅美國身心障礙人士法。 本研究認為，任由視障者因其障礙而成為網路科技發展下的邊緣人，違背近代以「社會模式的障礙」而非「身體能力主義」看待身障者之原則，為促進弱勢族群―特別是視障者近用網路之權益，必須開始重視「網路無障礙」之議題，因此方提出「視障者網路無障礙法制之研究」，也期待本論文之研究，能為此一議題帶來不同思考角度。 / The Internet is an indispensable tool to engage with the outside world. However, there are many websites or systems inaccessible to the visually impaired people due to the design negligence. It may because many engineers only consider the convenience of normal people when designing websites or systems. But when the importance of the Internet is getting higher, even associating with the basic human rights and resource allocation, the Internet users with visual impairments should be treated like the normal people due to the principle of equality and prohibition of discrimination. It means that the websites or systems operators should meet the “Web Accessibility” requirements. Of course, the cost is required, and it can be expected that only “encouragement” is not enough to let people always put “Digital Disability Rights” in mind. Therefore, an appropriate legal mandatory is necessary. In our country, there is a Web Accessibility certification standard while lacking of legal coercion and which leads to poor promotion of the certification standard. There are only a few research focusing on the legal regime of Web Accessibility while usually did not respond to the actual development of modern Internet technology. So we want to build a complete discussion framework for legal regime of Web Accessibility via the analysis of the behaviors of the visually impaired people and the development of the Internet. We classify the right infringements of the web inaccessible to the visually impaired people into the infringements of the rights to equal access to information, copyright works, and cyberspaces/facilities on the Internet. In the chapter 3, we discuss the visually impaired people’ right to access the information. Although the use of Internet is very wide, access the information still play an important role when we talk about Internet nowadays. And we also introduce some laws that protect the right of visually impaired people access the copyright works. In the chapter 4, we discuss the visually impaired people’ right to get into the cyberspaces and to use the facilities on the web. In this chapter, we take a more macro view of the Internet rather than focusing on one or two often used functions. Now the points of Ablebodyism are replaced by the principle of Social Model of Disability and we should not let the visually impaired people become outcast of the technology world. So we propose this research. And hope this research will contribute to enhancing the rights of visually impaired people.

Text in English with abstracts in English, isiXhosa and isiZulu / Disability studies largely ignored or neglected the experiences of rural women with disabilities (WWD) in the Global South. This qualitative study documents the challenges faced by Zimbabwean rural WWD in the enjoyment of their fundamental rights and freedoms. Against the backdrop of various global, regional and national efforts to advance WWD’s rights, the study examines possibilities for change. Utilising a phenomenological design, data were collected through in-depth interviews with women and girls with disabilities (WGWD), and semi-structured interviews with state and non-state actors in disability rights. Augmented by observations and extensive literature and policy reviews, the research findings revealed that the majority of rural WWD are not aware of their legal rights and have limited access to productive resources, information, employment, education and food. Rural WWD face mobility challenges and are largely discriminated against in health institutions and excluded from taking part in socioeconomic and political activities. Girls with disabilities in inclusive schools battle against a myriad of attitudinal, environmental and administrative hurdles that limit their academic and social functioning. The results confirm the feminist disability theory’s view that the functioning of WGWD is heavily determined by wider contextual, social, historic and gendered power relations. The findings support recommendations for an urgent alignment of liberal national disability instruments, policies and practices to international human rights norms. The 2013 Constitution effectuates a human rights approach to disability, yet in practice the exclusion of the disabled, rural, female ‘other’ continues unabated. Transformation in this regard must include a restructuring of financial resourcing of various state institutions for advancing disability rights. Various avenues to ensure for effective disability rights mainstreaming, lobbying, advocacy, awareness raising, and capacitation of rural communities are suggested. At the heart of it all is a change in mind-sets to embrace WWD as equal human beings with rights and dignity. / Izifundo zobulwelwe azikhange ziyithathele ngqalelo imeko namava abantu basetyhini abayimilwelwe behlala emaphandleni kumazwe asemaZantsi. Esi sifundo somgangatho sibhala ngemingeni ejongene nabasetyhini abayimilwelwe basemaphandleni eZimbabwe xa befuna ukuxhamla amalungelo nenkululeko eyimfanelo yabo yemveli. Ngokuqwalasela imizamo eliqela yehlabathi jikelele, yezithili neyesizwe ekuphuhliseni amalungelo abasetyhini abayimilwelwe, esi sifundo sivavanya amathuba otshintsho. Ngokusebenzisa uyilo lwezifundo ngokwenzekayo, kwaqokelelwa iinkcukacha zolwazi ngokuqhuba udliwano ndlebe olunzulu namakhosikazi namantomabazana ayimilwelwe, kwaqhutywa nodliwano ndlebe lwemibuzo engenampendulo zithe ngqo (semi structured interviews) nemibutho yoburhulumente nengeyoyoburhulumente esebenza ngamalungelo emilwelwe. Uphando olwalukhatshwa kukuzibonela nokufunda nzulu okubhaliweyo ngemigaqo nkqubo, lwaveza ukuba uninzi lwabasetyhini abayimilwelwe basemaphandleni alwazi nto ngamalungelo alo asemthethweni kwaye alufikeleli ngokwaneleyo kwimithombo eluncedo, ulwazi, imisebenzi, imfundo nokutya. Abasetyhini abayimilwelwe basemaphandleni bajamelene nemingeni yokungakwazi ukuhamba kwaye bayacalucalulwa kakhulu kumaziko ezempilo. Ababandakanywa ekuthatheni inxaxheba kwimisebenzi yezentlalo, uqoqosho nezombuso/upolitiko. Amantombazana ayimilwelwe asezikolweni zikawonkewonke asedabini nemiqobo emininzi yendlela acingelwa ngayo, indawo ewangqongileyo nolawulo, zinto ezo zikuthibazayo ukusebenza kwawo kwezemfundo nasekuhlaleni. Iziphumo zophando ziyangqinelana nengcingane yezifundo zabasetyhini ethi indlela yokwenza izinto yabasetyhini abayimilwelwe ilawulwa ikakhulu lunxulumano lweemeko ezigqubayo, ezentlalo, ezembali nezesini. Iziphumo zophando zixhasa iingcebiso ezithi makukhawuleziswe kwenziwe ungqamano phakathi kwezixhobo, imigaqo nkqubo nemisebenzi yobulwelwe esizweni nezimiselo zamalungelo oluntu kwihlabathi ngokubanzi. UMgaqo Siseko wama-2013 ubeka elubala indlela yokujongana nobulwelwe, kodwa kuyaqhubeka kona ukujongelwa phantsi kwemilwelwe, yabasemaphandleni, yabasetyhini. Inguqu kulo mbandela kufuneka iquke ukuyilwa ngokutsha kwenkxaso mali kumaziko oburhulumente ahlukeneyo ukwenzela ukuba kuqhutyelwe phambili amalungelo emilwelwe. Kucetyiswa ngeendlela ezahlukeneyo zokuqinisekisa amalungelo emilwelwe njengokwenza iinkqubo ezifanelekileyo ezingundoqo, ngokuthethathethana nokuphembelela, ngokwazisa uluntu nokuxhobisa uluntu lwasemaphandleni. Esizikithini sako konke kufuneka utshintsho lwengqondo ukwenzela ukuba bamkelwe abasetyhini abayimilwelwe njengabantu abalingana nabanye benamalungelo nesidima. / Izifundo ezimayelana nokukhubazeka zivame ukunganaki noma ukungabi nandaba nokwenzeka kubantu besifazane abakhubazekile (ama-WWD) abahlala emaphandleni emazweni angakathuthuki ngokwanele (aseGlobal South). Lolu cwaningo olubheka kabanzi imininingwane engamaqiniso luqopha izingqinamba ezikhungethe abesifazane baseZimbabwe abakhubazekile abahlala emaphandleni ngenkathi bethokozela amalungelo abo asemqoka kanye nenkululeko yabo. Phezu kwemizamo eyahlukahlukene yezinga lomhlaba, lezifunda nelikazwelonke, yokuthuthukisa amalungelo abesifazane akhubazekile, lolu cwaningo lubheka amathuba akhona oguquko. Kwasetshenziswa uhlobo lokucwaninga olubheka okuthize ngokuhlola imibono yalabo abake baba sesimweni salokho okucwaningwa ngakho, ngokufaka imibuzo abesifazane kanye namantombazane akhubazekile, kanye nalabo abadlala indima kwezamalungelo abantu abakhubazekile abasebenzela umbuso nabangasebenzeli umbuso. Ngokufakazelwa kakhulu ngokubonakele kanye nokuhlaziywa kwemibhalo nenqubomgomo, imiphumela yocwaningo enohlonze iveze ukuthi iningi labesifazane abakhubazekile basemaphandleni abawazi amalungelo abo ezomthetho kanti futhi abafinyeleli ngokuphelele emithonjeni elusizo, kwimininingwane, kwimisebenzi, kwezemfundo kanye nasekudleni. Abesifazane abakhubazekile basemaphandleni babhekana nezingqinamba zokungakwazi ukuhamba kahle kanti futhi bayacwaswa ezikhungweni zezempilo, baphinde banganikwa ithuba lokubamba iqhaza kwezenhlalo-mnotho nezepolitiki. Amantombazane akhubazekile ezikoleni ezamukela zonke izinhlobo zabafundi babhekana nezimo eziningi eziyizingqinamba maqondana nendlela aphathwa ngayo, nesimo sendawo kanye nokwenziwa kwezinto okuba nomkhawulo ekwenzeni kwabo maqondana nezemfundo nezenhlalo. Imiphumela iqinisekisa umbono wenzululwazi elwela abesifazane abakhubazekile wokuthi ukusebenza kwabesifazane abakhubazekile, esikhathini esiningi, kuvame ukuvela ngenxa yengqikithi esabalele yobudlelwano bamandla maqondana nenhlalo, umlando kanye nobulili. Imiphumela yocwaningo yeseka izincomo zokuthi kumele kube khona ukulinganiswa okuphuthumayo kwempahla yokusebenza maqondana nokukhubazeka, izinqubomgomo kanye nezindlela zokusebenza ezingeni likazwelonke kanye nokuvamile ezingeni lomhlaba wonke kokuphathelene namalungelo abantu. UMthethosisekelo wonyaka we-2013 wenza kusebenze indlela yokubheka ukukhubazeka ngeso lamalungelo abantu, kodwa indlela okwenziwa ngayo iqhubeka kakhulu nokubandlulula abesifazane abakhubazekile basemaphandleni. Uguquko, maqondana nalokhu, kumele lufake ukuhlelwa kabusha kosizo lwezimali ezikhungweni ezahlukahlukene zombuso eziqhuba phambili amalungelo aba. Kuhlongozwa izindlela ezahlukahlukene zokuqinisekisa amalungelo abakhubazekile okufaka kukho ukufakwa kwemiphakathi yasemaphandleni ezinhlelweni, ukukhulumisana nayo ukuze ibambe iqhaza, ukuyilwela, ukwenza ukuba iqaphele okwenzekayo kanye nokuyinikeza amandla okwenza. Okuyiyona nto ebaluleke kakhulu, wuguquko ekucabangeni ukuze abesifazane abakhubazekile bathathwe njengabantu abalingana nabanye abanamalungelo nesithunzi. / Development Studies / D. Phil. (Development Studies)