Part Six (VI)

Social media, support and activism

Chapter 18: 

The tragedy of the hidden lamps: in search of disability rights activists from the global South in the digital era

Nqobani Dube

Disability Activist

Nqobani Dube  has a Master of Arts in Development and Human Rights from Swansea  University. His thesis focused on land reforms and livelihoods of people with disabilities in Africa. In the past 12 years, he has extensively worked in different roles around southern Africa for various disability organisations and the Government of Zimbabwe. This strengthened further his research and work, which revolves around the intersections of disability inclusion with development and humanitarian interventions. Nqobani remains interested in representations of disability rights activism in popular culture and radical pedagogy.

To learn more:

Listen to a podcast about Nqobani Dube: http://open.spotify.com/episode/7rtT9aBZPCmJmsvbGDj2DX

Twitter: @nqostos

Chapter 19: 

With the knife and the cheese in hand!’: a virtual ethnography of the cyber-activist disabled movement in Brazil and its transnational impact

Anahi Guedes de Mello

ANTHROPOLOGIST

Anahi Guedes de Mello is a social scientist, anthropologist, and Ph.D. student at the Graduate Program in Social Anthropology, at the Federal University of Santa Catarina (UFSC), in Florianópolis, Brazil. She is a researcher of the Nucleus of Gender Identities and  Subjectivities, at the UFSC’s Department of Anthropology, and of the Nucleus of Disability Studies, at the UFSC’s Department of Psychology. She is also an associate researcher at Anis – Institute of Bioethics, in Brasília, Brazil.

To learn more:

Visit Anahi Guedes de Mello’s personal website: http://ufsc.academia.edu/AnahiGuedesdeMello

Read “Occupying Disability Studies in Brazil”: http://www.researchgate.net/publication/283579536_Occupying_Disability_Studies_in_Brazil

Watch a talk (in Portuguese): http://www.youtube.com/watch?v=j-7DRy8m-uI

Twitter: @anahigm75

 

Marco Antonio Gavério

sociologist

Marco Antonio Gavério is a social scientist, sociologist, and Ph.D. student at the  Graduate Program in Sociology, at the Federal University of São Carlos in São Carlos, Brazil.  Researcher of the SexEnt: Body, Sexuality and Entertainment, at UFSCar. Gaverio’s studies was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES).

To learn more: 

Read about Marco Antonio Gavério’s work  online: http://ufscar-br.academia.edu/GaverioMarco

Read the article “Facts of Cripness to the Brazilian: dialogues with Avatar the film” http://journals.openedition.org/aa/3481

Pamela Block

Professor of Disability

Pamela Block is a Professor of Disability Studies, focusing on health promotion, community- building and capacity-building for autistic and disabled people and groups. She teaches in the doctoral program in Health and Rehabilitation Sciences and is Director of the Graduate Certificate in Disability Studies. Her recent book Occupying Disability is a co-edited volume exploring concepts of ‘occupying’ and ‘decolonizing‘ disability across the fields of disability studies, anthropology and applied health fields such as occupational  therapy. She is a former President of the Society for Disability Studies (2009–2010), and a Fellow of the Society for Applied Anthropology.

To learn more:

You can read about Pamela Block’s work online: http://www.anthropology.uwo.ca/people/faculty/pamela_block.html

Watch a video where Pamela discusses her work: http://vimeo.com/160629291

You can read her blog: http://pamelablock.blogspot.com/

Read her co-written article on “Teaching Disability Studies in the Era of Trump”: http://somatosphere.net/2017/teaching-disability-studies-in-the-era-of-trump.html/

Twitter:  @pamela_block

 

Chapter 20: 

Australia’s treatment of Indigenous prisoners: the continuing nature of human rights violations in West Australian jail cells

Hannah McGlade

Senior advocate

Hannah McGlade holds qualifications in law and human rights. She is the author of ‘Our Greatest Challenge, Aboriginal children and Human Rights’ and recipient of the Stanner award. In 2016, she was appointed the Senior Indigenous Fellow of the United Nations Office of the High Commissioner for Human Rights and the Senior Indigenous Research Fellow at Curtin University. A member of the Noongar community, she is a prominent Australian Indigenous human rights and social justice advocate.

To learn more:

To read about Hannah McGlade’s work: http://staffportal.curtin.edu.au/staff/profile/view/Hannah.Mcglade/

Listen to her talking about her work on a radio show: http://omny.fm/shows/wangki-radio/dr-hannah-mcglade-international-day-of-worlds-indi

Read an article she published with Amnesty International entitled, “Eight issues behind indigenous youth suicide”: http://www.amnesty.org.au/eight-issues-behind-indigenous-youth-suicide/

Deathscapes Project: http://www.deathscapes.org/

Twitter: @hmcglade

 

Chapter 21: 

 ‘Lchad Poland’ and the fight against inequality: the role of internet advocacy in cases of a rare genetic condition

Anna Chowaniec-Rylke

Ph.D student

Anna Chowaniec-Rylke is a PhD student of anthropology at the University of Warsaw. Her main areas of interests are rare and genetic disorders, which are the topic of her doctoral thesis. She was an assistant researcher in two projects financed by the Polish National Science Center and her articles were published in Polish anthropological journals. She also wrote a book chapter on children, health and childhood studies. She has presented her work at various international conferences.

To learn more:

Read about Anna Chowaniec-Rylke’s work: http://etnologia.amu.edu.pl/badania/socio-cultural-dimensions-of-rare-diseases-the-case-of-lchad-deficiency-a-comparative-study-of-poland-and-finland/

Read an article linked to this project: http://journals.bg.agh.edu.pl/STUDIA/2018.17.2/human.2018.17.2.31.pdf

Find out more about activism of patients with rare diseases in Europe: http://www.eurordis.org/publication/rare-diseases-understanding-public-health-priority and South Africa: http://www.rarediseases.co.za/