Beyond Able-Minded Citizenship: Embracing Intellectual Ability Differences in Democratic Education
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Nontherapeutic Growth Attenuation, Parental Medical Decision Making, and the Profoundly Developmentally Disabled Child’S Right to Bodily Integrity
KOLL.DOCX (DO NOT DELETE) 12/17/2009 2:48 PM GROWTH, INTERRUPTED: NONTHERAPEUTIC GROWTH ATTENUATION, PARENTAL MEDICAL DECISION MAKING, AND THE PROFOUNDLY DEVELOPMENTALLY DISABLED CHILD’S RIGHT TO BODILY INTEGRITY MARY KOLL* Should parents of a profoundly developmentally disabled child be permitted to permanently terminate their child’s healthy bodily de- velopment in order to arguably increase the child’s quality of life? While such a procedure may sound like something out of science fic- tion, a highly publicized medical journal article released in 2006 de- scribed the case of Ashley X, a profoundly developmentally disabled child who received high-dose hormone treatment—along with a mas- tectomy and a hysterectomy—to permanently stunt her growth and al- legedly increase her quality of life. Though the authors of the article presented this type of nontherapeutic growth attenuation as a viable medical option for profoundly disabled children, critics from all over the world characterized the procedure—which came to be known as the “Ashley Treatment”—as a grave and unacceptable human rights violation. Nonetheless, the Ashley Treatment has also been met with support from some, most notably the parents of profoundly disabled children, many of whom have expressed a desire for their own child- ren to undergo similar procedures. This Note explores the question of whether parents should be permitted to choose such interventions on behalf of a child from the perspective of the child’s rights, specifi- cally, the child’s fundamental right to bodily integrity. Following a brief description of the case of Ashley X and the ensuing controversy, the author describes the right to bodily integrity, including its origins, its modern constitutional status, and its application to profoundly dis- abled children. -
Thesis Statement
PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION by Sarah M. Pope B.S., University of New Hampshire, 2000 J.D., University of Pittsburgh, 2007 Submitted to the Graduate Faculty of The Center for Bioethics and Health Law in partial fulfillment of the requirements for the degree of Master of Arts University of Pittsburgh 2007 UNIVERSITY OF PITTSBURGH THE CENTER FOR BIOETHICS AND HEALTH LAW This thesis was presented by Sarah M. Pope It was defended on April 13, 2007 and approved by Elizabeth Chaitin, DHCE, Center for Bioethics and Health Law James Flannery, JD, School of Law Thesis Advisor: Alan Meisel, JD, Center for Bioethics and Health Law, School of Law ii Copyright © by Sarah M. Pope 2007 iii PERSONAL ASSISTANTS AND COLLABORATIVE DECISION MAKING: PROMOTING A BETTER BALANCE OF AUTONOMY AND WELL-BEING FOR ADULTS WITH MODERATE, MILD, AND BORDERLINE MENTAL RETARDATION Sarah M. Pope, J.D., M.A. University of Pittsburgh, 2007 Autonomy is a core value of American tradition and is promoted in health care through the doctrine of informed consent. The notion underlying informed consent is that patients should have the right to decide, and are often in the best position to know, what will enhance their own well-being. Although this ethic has been extended to incompetent patients, by employing surrogate decision making, providing surrogate decision makers for adults with moderate, mild, and borderline mental retardation (“M-BMR”), who could potentially make their own decisions if adequate supports were offered, unreasonably restricts the autonomy of such individuals and often results in disregard for the patients’ human dignity. -
Curriculum Vitae - Miranda Fricker
Curriculum Vitae - Miranda Fricker Date of birth: 12/3/1966 Academic address: Dept of Philosophy, University of Sheffield, 45 Victoria St, Sheffield S3 7QB. Email address: [email protected] Web page: http://www.shef.ac.uk/philosophy/staff/profiles/fricker Career & Education 2013 Leverhulme Major Research Fellow (2014-16) 2012 Professor of Philosophy, University of Sheffield 2011 Head of Philosophy Department, Birkbeck, University of London 2011 Assistant Dean for Postgraduate Research in the School of Social Science, History and Philosophy 2010 University of London Research Fellow, Institute of Philosophy, School of Advanced Study 2008 Promoted to Reader 2006 Promoted to Senior Lecturer 2000-12 Lecturer in Philosophy, Birkbeck College, University of London 1998-00 Lecturer in Philosophy, and British Academy Postdoctoral Fellow, Heythrop College, University of London 2000 Visiting Scholar, Dept of Philosophy, University of California, Berkeley 1997-98 British Academy Postdoctoral Fellow, Birkbeck College, University of London 1996 Awarded DPhil, Oxon 1995-97 Jacobsen Research Fellow, Birkbeck College, University of London 1991-96 Wolfson College, University of Oxford: DPhil in Philosophy 1994-95 Balliol College Lectureship 1992/94 Wolfson Graduate Prize 1989-90 University of Kent at Canterbury: MA in Women's Studies, Distinction 1985-88 Pembroke College, Oxford, BAHons 2.1 Philosophy & Modern Languages Teaching Areas of specialism: Ethics, Social Epistemology, Feminist Philosophy Curriculum design: In 2013-14 I served as Chair of the Working Party set up to design the mandatory first-year Faculty Challenge for the whole Arts & Humanities Faculty, University of Sheffield. In 2010 I set up the modular Philosophy MA at Birkbeck; in 2007 I successfully proposed an option in Gender & Philosophy for the London MPhilStud; previously in 2004 two colleagues and I introduced the University of London intercollegiate MA option in Gender & Philosophy. -
The Strange Case of Ashley X
Forever Small: The Strange Case of Ashley X EVA FEDER KITTAY I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child ‘‘forever small.’’ The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physi- cians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay ‘‘forever small’’ and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daugh- ter with severe cognitive impairments. PRELUDE THE CASE In 2002, the parents of a six-year-old girl with a condition that will require physical care throughout her life, and who had begun to exhibit signs of pre- cocious puberty, requested, and were granted, permission to have high doses of estrogen administered to induce the premature closing of the long-bone epiphyses, thus maintaining the girl’s height at 4’5’’. The intention was to facilitate her care by keeping her small. To reduce the uterine bleeding that accompanies the procedure, as well as the risk of uterine cancer, she underwent a hysterectomy prior to the estrogen treatment. -
“I Can't Thank You Enough”
“I Can’t Thank You Enough” A Contemporary Guide for Peer Mentors Hoping to Make a Difference in the Lives of Autistic College Students By Sylvia Cusack Johnson cuny.edu/projectreach @CUNYDisability Foreword It is with great pleasure that we introduce and share the ‘Contemporary Guide for Peer Mentors Hoping to Make a Difference in the Lives of Autistic College Students’. We hope that you will find it to be an informative and entertaining guide for new mentors in the field of neurodiversity. CUNY has been fortunate to be a recipient of a grant from the FAR Fund to enhance the university’s capacity to support its growing population of students with autism spectrum disorders (ASD) and to provide training and resources to faculty and staff about autism. We are eternally grateful to Dr. Shirlee Taylor, Executive Director of the FAR Fund for her endless support, confidence, and encouragement. Under the leadership of Assistant Vice Chancellor of Student Inclusion Initiatives, Dr. Christopher Rosa, five pilot campuses were designated to develop best practices to share with the university and interested stakeholders. Our campus Project REACH directors, Dr. Kristen Gillespie of College of Staten Island, Valerie Stewart Lovell of Brooklyn College, Dr. Regina Varin-Mignano of LaGuardia Community College, Dr. Stella Woodroffe of Kingsborough Community College and Marcos Gonzalez of Borough of Manhattan Community College worked tirelessly to create and develop inclusive initiatives, mentor programming and universal design practices for faculty and staff. A huge thanks to Jenna Lamm, who is responsible for the development, programming, creativity, and success of our annual CUNY Neurodiversity Conference. -
The Ashley Treatment: the Current Legal Framework Protects the Wrong Rights
Minnesota Journal of Law, Science & Technology Volume 10 Issue 2 Article 12 2009 The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights Jillian Kornblatt Follow this and additional works at: https://scholarship.law.umn.edu/mjlst Recommended Citation Jillian Kornblatt, The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights, 10 MINN. J.L. SCI. & TECH. 773 (2009). Available at: https://scholarship.law.umn.edu/mjlst/vol10/iss2/12 The Minnesota Journal of Law, Science & Technology is published by the University of Minnesota Libraries Publishing. KORNBLATT J. The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights. MINN. J.L. SCI. & TECH. 2009;10(2): 773-800. Note The Ashley Treatment: The Current Legal Framework Protects the Wrong Rights Jillian Kornblatt* In 2006 two Seattle doctors performed several procedures to attenuate the growth of a profoundly neurologically and cognitively disabled six-year-old girl. When the doctors described the treatment in a medical journal, the story gained worldwide publicity and quickly became the subject of a highly contentious and emotionally charged controversy. As a result, a federally-sanctioned disability rights protection organization conducted an investigation and concluded that the treatment should not have been performed without a court order and that doing so violated the girl’s constitutional rights. Part I of this Note considers the legal framework applied to the treatment decision and how the framework would apply to other children whose parents requested the treatment. Part II then analyzes whether this framework adequately protects the best interests and constitutional rights of potential candidates for this treatment and their parents. -
Fact Sheet: Women with Disabilities and Legal Issues
TASC is sponsored by the Administration on Developmental Disabilities (ADD), the Center for Mental Health Services (CMHS), the Rehabilitation Services Administration (RSA), the Social Security Administration (SSA), and the Health Resources Services Administration (HRSA). TASC is a division of the National Disability Rights Network (NDRN). Fact Sheet: Women with Disabilities and Legal Issues Concerning Reproductive Health August, 2011 Prepared by: National Health Law Program Jina Dhillon and Celine Lefebvre1 with a grant from the Training and Advocacy Support Center (TASC) Introduction This fact sheet describes significant reproductive health-related legal issues that women with disabilities may face. Women with disabilities are particularly susceptible to discriminatory standards of care, coercion and misinformation about their reproductive autonomy. Courts have issued decisions involving the capacity to consent to sterilization, abortion and similar procedures, or the ability of a guardian to make reproductive health determinations in the best interests of the individual. This fact sheet provides an overview of case law in this area as well as a brief discussion of other issues identified by legal scholars as important areas for advocacy. Reproductive Health Issues Sterilization People with mental and physical disabilities have often been subjected to forced sterilization. The notion that these women and men are unable to make meaningful decisions about their reproductive capacity often leads caretakers, guardians, and the courts to consider sterilization as the best option for them. Case law regarding sterilization stems from the United States Supreme Court’s 1927 decision in Buck v. Bell, in which the U.S. Supreme Court upheld a Virginia statute that instituted compulsory sterilization of individuals with mental disabilities.2 Since then, many cases have addressed the issue of sterilization of women with disabilities. -
Neurodiversity Studies
Neurodiversity Studies Building on work in feminist studies, queer studies, and critical race theory, this vol• ume challenges the universality of propositions about human nature, by questioning the boundaries between predominant neurotypes and ‘others’, including dyslexics, autistics, and ADHDers. This is the first work of its kind to bring cutting-edge research across disciplines to the concept of neurodiversity. It offers in-depth explorations of the themes of cure/ prevention/eugenics; neurodivergent wellbeing; cross-neurotype communication; neu• rodiversity at work; and challenging brain-bound cognition. It analyses the role of neuro-normativity in theorising agency, and a proposal for a new alliance between the Hearing Voices Movement and neurodiversity. In doing so, we contribute to a cultural imperative to redefine what it means to be human. To this end, we propose a new field of enquiry that finds ways to support the inclusion of neurodivergent perspectives in knowledge production, and which questions the theoretical and mythological assump• tions that produce the idea of the neurotypical. Working at the crossroads between sociology, critical psychology, medical humani• ties, critical disability studies, and critical autism studies, and sharing theoretical ground with critical race studies and critical queer studies, the proposed new field – neurodiversity studies – will be of interest to people working in all these areas. Hanna Bertilsdotter Rosqvist is an Associate Professor in Sociology and currently a Senior Lecturer in Social work at Södertörn University. Her recent research is around autism, identity politics, and sexual, gendered, and age normativity. She is the former Chief Editor of Scandinavian Journal of Disability Research. Nick Chown is a book indexer who undertakes autism research in his spare time. -
An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities
Syracuse University SURFACE Syracuse University Honors Program Capstone Syracuse University Honors Program Capstone Projects Projects Spring 5-1-2015 An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities Katelyn Marie Edel Syracuse University Follow this and additional works at: https://surface.syr.edu/honors_capstone Part of the Ethics and Political Philosophy Commons, and the Other Neuroscience and Neurobiology Commons Recommended Citation Edel, Katelyn Marie, "An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities" (2015). Syracuse University Honors Program Capstone Projects. 847. https://surface.syr.edu/honors_capstone/847 This Honors Capstone Project is brought to you for free and open access by the Syracuse University Honors Program Capstone Projects at SURFACE. It has been accepted for inclusion in Syracuse University Honors Program Capstone Projects by an authorized administrator of SURFACE. For more information, please contact [email protected]. An Exploration of the Societal Impact of Neuroethics in Scientific and General Communities A Capstone Project Submitted in Partial Fulfillment of the Requirements of the Renée Crown University Honors Program at Syracuse University Katelyn Marie Edel Candidate for Bachelor of Arts and Renée Crown University Honors May 2015 Honors Capstone Project in Neuroscience Capstone Project Advisor: ___________________________ William Peace, Professor in the Renée Crown University Honors Program Capstone Project Reader: ____________________________ -
Biofuturity, Disability, and Crip Communities in Anglophone Speculative Fiction
UNIVERSITY OF CALIFORNIA, SAN DIEGO The Dis-Topic Future: Biofuturity, Disability, and Crip Communities in Anglophone Speculative Fiction A dissertation submitted in partial satisfaction of the requirements for the degree Doctor of Philosophy in Literature by Amanda Martin Sandino Committee in charge: Professor Shelley Streeby, Chair Professor Michael Davidson Professor Brian Goldfarb Professor Ari Heinrich Professor Sarah Nicolazzo 2018 Copyright Amanda Martin Sandino, 2018 All rights reserved. The Dissertation of Amanda Martin Sandino is approved, and it is acceptable in quality and form for publication on microfilm and electronically: ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ ________________________________________________________________ (Chair) University of California, San Diego 2018 iii Dedication This dissertation is dedicated to my chronic pain support network—nothing about us without us! iv Epigraph “They're looking for this fearsome wizard only to discover that he's nothing but a little tiny fellow. I mean, I don't think the point is that he's tiny. I think the point is, you know, things that we believe we lack are already inside of us just wanting to be found.” – George Crabtree, “Victoria Cross,” Murdoch Mysteries “You don't speak of dreams as unreal. They exist. They leave a mark behind them.” – Ursula K. Le Guin, The Lathe of Heaven “Art is not neutral. It either upholds or disrupts the status quo, advancing or regressing justice. We are living now inside the imagination of people who thought economic disparity and environmental destruction were acceptable costs for their power. It is our right and responsibility to write ourselves into the future. All organizing is science fiction. -
Tilburg University Epistemic Justice Geuskens, Machteld
Tilburg University Epistemic Justice Geuskens, Machteld Publication date: 2018 Document Version Publisher's PDF, also known as Version of record Link to publication in Tilburg University Research Portal Citation for published version (APA): Geuskens, M. (2018). Epistemic Justice: A Principled Approach to Knowledge Generation and Distribution. [s.n.]. General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Download date: 28. sep. 2021 Epistemic Justice A Principled Approach to Knowledge Generation and Distribution Machteld Geuskens Epistemic Justice A Principled Approach to Knowledge Generation and Distribution Cover image: Vasily Kandinsky Circles in a Circle 1923 Oil on canvas 38 7/8 x 37 5/8 inches (98.7 x 95.6 cm) Framed: 44 1/8 x 43 1/8 x 2 1/2 inches (112.1 x 109.5 x 6.4 cm) Credit line: Philadelphia Museum of Art, The Louise and Walter Arensberg Collection, 1950-134-104 ISBN: 978-94-92679-68-0 Cover design and layout by: Proefschriftenprinten.nl – The Netherlands Printed by: Print Service Ede - Ede, The Netherlands © Machteld Geuskens, 2018 All rights reserved. -
The Practical Origins of Ideas
OUP CORRECTED AUTOPAGE PROOFS – FINAL, 19/1/2021, SPi The Practical Origins of Ideas Genealogy as Conceptual Reverse-Engineering MATTHIEU QUELOZ 1 OUP CORRECTED AUTOPAGE PROOFS – FINAL, 19/1/2021, SPi 3 Great Clarendon Street, Oxford, OX2 6DP, United Kingdom Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries © Matthieu Queloz 2021 The moral rights of the author have been asserted First Edition published in 2021 Impression: 1 Some rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, for commercial purposes, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by licence or under terms agreed with the appropriate reprographics rights organization. This is an open access publication, available online and distributed under the terms of a Creative Commons Attribution – Non Commercial – No Derivatives 4.0 International licence (CC BY-NC-ND 4.0), a copy of which is available at http://creativecommons.org/licenses/by-nc-nd/4.0/. The pre-press of this publication was supported by the Swiss National Science Foundation. Enquiries concerning reproduction outside the scope of this licence should be sent to the Rights Department, Oxford University Press, at the address above Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America British Library Cataloguing in Publication Data Data available Library of Congress Control Number: 2020951579 ISBN 978–0–19–886870–5 DOI: 10.1093/oso/9780198868705.001.0001 Printed and bound in the UK by TJ Books Limited Links to third party websites are provided by Oxford in good faith and for information only.