Gerard Goggin paper for 'Cultural Studies Association of Australasia' (CSAA) conference, University of Melbourne, 1-3 Dec 2015.

1. Culture and Human Rights:
A Critical Disability Perspective
paper for Cultural Studies Association of
Australasia (CSAA) 2015
Culture & Human Rights panel
Gerard Goggin @ggoggin
Dept of Media & Communications
University of Sydney

2. rather than disability just being a
minor aspect of human rights, it is
in the mix — with other formerly
majoritorian, non-mainstream
approaches — in reshaping human
rights, their imagining, and
activation.

3. We have a rich, emerging body of work
reconceptualising human rights informed
by notions, experiences, and social
relations of disability.
Against this backdrop, in this paper I reflect
upon culture and human rights, from a
critical, cultural disability perspective.

4. 1
cultural dynamics & locations
of disability

5. people with disabilities as ‘minority’
(although, some minor experience of
impairment, and even disability, is could be
argued is almost universal; at least potentially so
- given incidence of impairment rises with age)
In various senses, still to be really teased out,
disability is regarded as ‘minor culture’

6. Disability is still typically culturally devalued; and figures
very strongly in systems of normalization (interwoven
with race, class, sex, gender, age)
One response to this has been the emergence, especially
from 1970s onwards of ‘disability culture’ - cultural
affirmation & production & ‘re-signification’ based on
experience, histories, distinctive cultures, language,
resources of disability communities
disability is both hyper-visible & largely invisible (at
extremities & margins) of general culture
e.g. obsessively prevalent particular modes & styles &
materials of representation (e.g. ‘super crip’ disability
celebrity) and locations vs. striking absence of diversity of
representations, enactments , performances of disability

9. David Mitchell & Sharon Snyder’s ‘cultural
model’ of disability:
‘disability’ to ‘function both as a referent for a
process of social exposé and a productive locus
for identification’ (Cultural Locations of
Disability, 2006, p. 10)
‘follow disability studies and other minority
discourses in the absolute refutation of [the]
parallel between biological and social worth’ (p.
17)

10. ‘for modernity, the eradication of disability
represented a scourge and a promise: its
presence signaled a debauched presence of
cultural degeneration … its presence [[‘the
eradication of disability]’ would mark the
completion of modernity as a cultural project …
those who anticipated the ultimate arrival of a
disability-free moment inevitably flirted with the
more sinister language of extermination’ (p.31)

11. A cultural understanding of disability is crucial
for understanding disability (& general) human
rights
first, the threshold issue is deeply cultural issue
of acknowledging that disability is integral part
of the human
Second, unravelling cultural dimensions of
disability is key to understanding & activating
human rights, including new disability human
rights

12. 2
communication as a key,
emergent human right - which
disability helps us to reimagine

13. Rights tensions
‘the inherent definition of disability as a bodily
based incapacity underwrites various civil rights
agendas’ (Mitchell & Snyder, Cultural Locations of
Disability 17)
2006 UN Convention on the Rights of Persons with
Disabilities
rise of disability human rights in neoliberal times
(cf. Helen Meekosha & Karen Solidatic’s 2013
critique)

14. ‘Despite the growing recognition of the rights of
people with disabilities, policy reforms that seek
to move people from welfare to work have, at
times, conflicted with the implementation of
international rights policy at the domestic level.’
Sarah Parker Harris , Randall Owen & Robert Gould (2012) Parity
of participation in liberal welfare states: human rights,
neoliberalism, disability and employment, Disability & Society,
27:6, 823-836

15. communication - an overarching concept for voice
& listening - is a key element in culture & social life,
esp. in present conjuncture of digital media
platforms
normative visions of society - ideals of democracy,
justice, equality, participation + especially rights -
also require accompanying models of
communication
John Keane’s ‘monitory democracy’, Manuel Castell’s ‘mass self-
communication’, Nancy Fraser’s counter public spheres & new,
transnational publics, Zizi Papacharissi’s ‘affective publics’,
Martha Nussbaum, social justice, disability, nonhuman animals,
Nick Couldry, voice matters & media justice

16. as yet, communication rarely includes the
diversity, styles, and requirements that are
evident if we take an affirmative, rather than
‘deficit’ model of disability
e.g. what is often termed ‘augmentative or
alternative communication’ (e.g. not normal) can be
seen, rather, as part of the genuine diversity &
variation that is communication
e.g. what was seen as a defect, or impairment,
deafness, requiring correction (oralism) is now
recognized as a rich culture & communication
repertoire - sign language

17. ‘Julia Rems-Smario: A Deaf Woman's Journey From Oralism to ASL -- See Her Success
Today’, 15 May 2015, YouTube

18. Thinking with disability, we need to reimagine
communication - and claim new kinds of
communications rights
which is what the UN Convention on Rights of
Persons with Disabilities does
Gerard Goggin. ‘Communication Rights and Disability Online: Policy
and Technology after the World Summit on the Information Society
(WSIS),’ Information, Communication & Society 18.3 (2015): 327-341.

19. “Communication” includes languages, display of
text, Braille, tactile communication, large print,
accessible multimedia as well as written, audio,
plain-language, human-reader and
augmentative and alternative modes, means
and formats of communication, including
accessible information and communication
technology. Convention of the Rights of Persons with
Disabilities (CRPD), UN, 2006, Article 2 - Definitions

20. ‘States Parties shall take all appropriate
measures to ensure that persons with
disabilities can exercise the right to freedom of
expression and opinion, including the freedom
to seek, receive and impart information and
ideas on an equal basis with others and through
all forms of communication of their choice…
(CRPD, UN, 2006, Article 21 - Freedom of expression and
opinion, and access to information)

21. a. Providing information intended for the general
public to persons with disabilities in accessible
formats and technologies appropriate to different
kinds of disabilities in a timely manner and without
additional cost;
b. Accepting and facilitating the use of sign
languages, Braille, augmentative and alternative
communication, and all other accessible means,
modes and formats of communication of their choice
by persons with disabilities in official interactions …
d. Encouraging the mass media, including providers
of information through the Internet, to make their
services accessible to persons with disabilities; (CRPD,
UN, 2006, Article 21)

22. 3
disability-communication at fault-
line of minority + majoritarian
culture --
the cases of #stellaschallenge,
#jointdestroyer, Anna Stubblefield
and D.J.

23. TEDx Sydney 2015 & #stellaschallenge

28. #JointDestroyer -
Nov 2015 Destroy the Joint controversy

33. ‘On October 2 [2015], Stubblefield, an associate
professor of philosophy at Rutgers-Newark and
disability studies scholar, was charged with two
counts of aggravated sexual assault for allegedly
engaging in non-consensual sexual activity with a
man the Times refers to as “D.J.,” who the jury
believed was unable to consent and who
Stubblefield claims is the love of her life. D.J. is now
34, has cerebral palsy, and cannot speak. The court
case hinged on whether he could communicate
using a controversial method called Facilitated
Communication, where a helper sets up a device
and provides support to a subject while they point
to select pictures, words, or letters.’ (Astra Taylor, ‘The Right
to be Loved,’ 13 Nov 2015, Fusion)

34. ‘Many disability activists I know acknowledge the
ambiguities circling around Facilitated
Communication. They have mixed opinions of Anna,
noting the striking power differential in their
relationship beyond the question of disability …
Nevertheless, what concerned them the most was
that once Facilitated Communication was called
into question, there were no attempts to provide
D.J. with access to alternative means of
communication so that he could have a voice in the
trial that would determine his future.’ (Astra Taylor,
‘The Right to be Loved,’ 13 Nov 2015, Fusion)