Part Four (IV)

Belonging, identity and values: diverse coalitions for rights

Chapter Ten: 

Disabled mothers of disabled children: an activism of our children and ourselves

Liz Crow

Disability Activist

 

Liz Crow is a British disabled woman and long-time activist and artist. She is a doctoral candidate at University of West of England, undertaking practice-led research into methodologies of activism. Liz is also mother to a teenager who has recently become a disabled person.

To learn more:

Website of Roaring Girls Production where you find Liz Crow’s reflections on art and activismhttp://www.roaring-girl.com/

About Liz Crow:  http://the-ndaca.org/the-people/liz-crow/

Article about  her ‘Bed-Out’ project for disability rights: http://www.theguardian.com/artanddesign/2013/apr/09/liz-crow-bed-disabled-rights

Video about the Figure’s art project featuring Liz Crow: http://www.youtube.com/watch?v=O21MD04FhH0

Twitter: @RGPLizCrow

Wendy Merchant

Disability Activist

Wendy Merchant is a British mother-activist, researcher and nurse whose interests include parenting, disability and interactions with health, education and social care professionals. She has worked on various research projects including the ‘Getting Things Changed’ project at the Norah Fry Centre for Disability Studies at the University of Bristol and her own auto- ethnographic research ‘Caring for disabled children in hospital: Mothers and nurses experiences’ at the University of the West of England, Bristol. Wendy’s experience of activism involves working alongside other mothers, actively contesting the othering of our ‘disabled’ children, whilst actively resisting those forces that seek to define children less as than human beings.

To learn more:

Read about Wendy Merchant’s work on her website: http://www.researchgate.net/profile/Wendy_Merchant2

Blog contribution on her work to support disabled academics: http://chronicallyacademic.blogspot.com/2017/09/reasonable-adjustments-access-to-work.html

Twitter: @wendymerchant97

Chapter Eleven: 

Dementia as a Disability

Kate Swaffer

DeMENTIA ACTIVIST

Kate Swaffer is a humanitarian, disability and dementia rights activist, author and speaker. She is the 2018 Global Leader in the 100 Women of Influence in Australia, and was the 2017 Australian of the year in South Australia. Kate is also the Chair, Chief Executive Officer and one of eight co-founders of Dementia Alliance International, a global advocacy and support group for people living with dementia, having been diagnosed at the age of 49. Kate is also a full member of the World Dementia Council, and a Board member of Alzheimer’s  disease International. She sits on several national and international Steering committees and Advisory groups, including the United Nations High Level Meeting Steering Committee.

To learn more:

Read Kate Swaffer’s blog: http://kateswaffer.com/

Watch a recent video where she explains why she is a ‘disrupter’ and challenges ideas and current treatment of people with dementia:  http://www.youtube.com/watch?v=u6TScmdukFM

Watch her dementia story: http://www.youtube.com/watch?v=u-pdkClmr6M

Twitter: @KateSwaffer

 

Brian LeBlanc

DEMENTIA ACTIVIST

Brian LeBlanc grew up in New Orleans, LA and has lived in the Gulf Coast area since then. He found his niche in the professional world as a Marketing and Public Relations Executive. All that changed in October of 2014 when he was diagnosed with Early-Onset Alzheimer’s Disease. He made a career by using his voice, he knew what he HAD to do… so he talked about it. He now spends his time as an International Alzheimer’s advocate, keynote speaker and session presenter at inter/national and local conferences, seminars and workshops. He is also a Crisis Intervention Team Trainer for Law Enforcement.

To learn more:

Watch a video about Brian LeBlanc: http://www.pbs.org/video/brian-leblanc-b8rwxy/

Visit his blog: http://abitofbriansbrilliance.com/

Listen to a podcast: http://agewyz.com/living-well-with-alzheimers/

Twitter: @BigBsBrilliance

Peter Mittler

DEMENTIA ACTIVIST

Peter Mittler was a clinical psychologist and Lecturer in Developmental and Abnormal Psychology, Birkbeck College, University of London (1963–1968); Founding Director Hester Adrian Research Centre for the Study of Learning Processes in the Mentally Handicapped University of Manchester (1968–1992); Professor of Education, Head of School of Education and Dean of the Faculty of Education, University of Manchester (1991–1995). Currently, he is Honorary Research Fellow Division of Nursing, Midwifery and Social Work in the Faculty of Sustainability, Education, Environment and Development, University of Manchester.

To learn more:

Watch a video where he argues for a human rights approach to dementia: http://vjdementia.com/video/vq0lxo2nnsa-introduction-of-a-human-rights-approach-for-people-with-dementia/

With Kate Swaffer arguing for human rights: http://www.youtube.com/watch?v=ADPD_yMbcGw

Access Peter Mittler’s work on his webpage: http://www.researchgate.net/profile/Peter_Mittler

Read the academic article “Rights in Mind” written with Professor Tom Shakespeare who Peter considers one of the best disability rights activists: http://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=disability+dementia+human+rights&btnG=

 

Chapter 12: 

Voices from survivors of forced sterilisations in Japan: Eugenics Protection Law 1948–1996

Nagase Osamu

Professor

Nagase Osamu is Eminent Research Professor at Institute of Ars Vivendi, Ritsumeikan University, Kyoto, Japan, and is a disability studies scholar.  He was the inaugural executive director of Japan Society for Disabilities (2003-2007).  At the international level, he is an editor of “Disability & Society” and for Inclusion International, he is the chair of the Membership Committee as well as an Officer.  At the national level, he is the vice-chair of the CRPD Committee of Japan Disability Forum, inaugural board member of both Japan Association for Disability Law and Disability Equality Training Forum.  Nagase was one of the Japanese people who publicly appealed for an official apology and compensation of eugenic sterilisations in December 2002.

To learn more: 

Find out more about Nagase Osamu’s work:  http://inclusion-international.org/nagase-osamu-officer/ and his advocacy against forced sterlisation: http://www.dpiap.org/news/detail.php?newsid=0000021

Japanese government compensates the victims of the Eugenics Law: http://www.youtube.com/watch?v=kO_3WgyOSH0

Japanese government apologises to victims (in Japanese): http://www.youtube.com/watch?v=kO_3WgyOSH0

Read news article about the compensation and apology: http://www.nytimes.com/2019/04/25/world/asia/japan-sterilization-eugenics-compensation.html

The Convention on the Rights of Persons with Disabilities (CRPD) Committee adopted List of Issues for the initial review of Japan late September, which included questions about compensations and redress for persons with disabilities who received eugenic sterilizations under the former Eugenic Protection Law.  The CRPD Committee will have a constructive dialogue with Japan and issue its concluding observations August 2020.  Japan Disability Forum (JDF), a national umbrella organization of/for persons with disabilities in Japan, submitted a very detailed parallel report to the CRPD Committee, which included information on eugenic sterilizations.

Article about history of eugenics in Japan: http://www.lit.osaka-cu.ac.jp/user/tsuchiya/gyoseki/paper/JPN_Eugenics.html and records kept that could aid compensation claims: http://www.japantimes.co.jp/news/2018/01/25/national/social-issues/survey-finds-records-remain-past-sterilizations-2700-japan-scrapped-eugenics-law/#.Xb745ej7TIU

History of eugenics and disability discrimination in the United States: http://www.independentliving.org/docs1/pfeiffe1.html ,United Kingdom: http://www.newstatesman.com/society/2010/12/british-eugenics-disabled and Germany http://www.ushmm.org/learn/students/learning-materials-and-resources/mentally-and-physically-handicapped-victims-of-the-nazi-era/forced-sterilization

Chapter 13: 

Indigenous Species

Khairani Barokka

Writer, Poet and artist

Khairani Barokka is a writer, poet and artist, whose work has been presented extensively in 15 countries. She is Modern Poetry in Translation’s Inaugural Poet-in-Residence. Among her honours, she was an NYU Tisch Departmental Fellow and Vermont Studio Center’s first Indonesian writer-in-residence, and is a UNFPA Indonesian Young Leader Driving Social Change for arts practice and research. She is co-editor of Stairs and Whispers: D/deaf and Disabled Poets Write Back (Nine Arches), author-illustrator of Indigenous Species (Tilted Axis), and author of Rope (Nine Arches Press). Recent exhibitions were at SALTS Basel and the ICA in London. She is a PhD candidate in Goldsmiths’ Visual Cultures Department.

To learn more:

Read about her work on her website: http://www.khairanibarokka.com/

Read an interview featured on the Disability Visibility Project: http://disabilityvisibilityproject.com/2017/04/19/interview-with-writerartist-khairani-barokka/

Video featuring Khairani Barokka speaking about her artivism: https://m.youtube.com/watch?v=lSyjR2cx3V4

Twitter: @mailbykite