Critical theory and disability studies:

constructing the public sphere of disability issue

Volha VerbilovichValeria Markina

(HSE, Moscow)

“There are no invalid people in the USSR!” (V.Fefelov, 1986)

Symbolic space and the processMedia representations as catalyzers of

the discussion

Public Sphere

disability issue

construction

the identity of people

with disability forming

Mass media Collective action

Research Questions

To find out how does the disability issue appear in public discussion?

•Who performs as the key actors of the discussion?•How Russian press represents people with Down syndrome? •What changes in the images could be found?•What are the effects? Is there a perspective of destigmatisation?

Method and sample “Moskovskiy Komsomolets” (popular)

is an independent daily tabloid publishing sensations or provocative messages on Russian politics and society

“Rossiyskaya Gazeta” (official)

is a daily socio-political newspaper. It has the status of official publisher of the governmental decisions _____________________________________

Totally - 174 articles, 2000-2012

Trends in Representations

*General dynamics of the number of articles about people with DS in the newspapers “MK” and “RG” (2000-2012)

1. People with Down syndrome (PWDS) are described as a deviance from mental health norms:

‘disabled persons who suffer from a cruel disease’ (2010)

‘incorrect results of screening test’ (2009)

‘pathology ’ (2011) ‘nature’s mistake’ (2010) ‘genetic freaks’ (2004)

“homosexualism is one of the genetic breaks similar to Down disease”

(quote from “Moskovskiy Komsomolets”- popular newspaper, 2006)

2. People with Down syndrome are mostly depicted as ‘invalids’:

60% articles in “MK” and 54% in “RG”

154 mentions in “MK” and 131 in “RG”‘invalid’ ‘disability’ total weight

MK 130 24 154 appr. 0,21

RG 121 11 131 appr. 0,26

3.Most of the articles depict PWDS as children but not as adult persons:

the increase of such representations during the last five years

77% in “RG” and 74% in “MK” “child-image”representations

as children as adult personMK 74% 13%

RG 77% 18%

total 75% 15%

4. In the selected media people with Down syndrome are mostly deprived of their gender, sexuality, fertility

5. They almost never appear as individuals with vocational skills and as independent citizens of society

6. The increase of positive representations: “active”, “creative”, “special”, “sun-children”, “open-heart”

the official messages of the governmental and social policy institutes

the nature of mass-media interests to the topic of disability, representations of the excluded group

the collective action from below, mobilization of the community of people with disabilities

The levels of the discussion

Selected cases

The selected cases are the public “scandals” in mass media in 2009-2012 that articulate disability issues

2009-2010 – popular Russian tabloid “Speed-Info” article about the children with Down Syndrome “Finish Them Off, So They Don't Suffer“ by A. Nikonov

Oct, 2012 – Radio Mayak case, dismissal of popular radio hosts Victoria Kolosova and Alexey Veselkin, who ridiculed terminally ill children live, during a program on medicine and diseases (cystic fibrosis)

CONCLUSION

1.Public discussion on the issue of disability makes the community of people with disabilities more visible in Russia

2.But mass media as a mediator of the discussion still tends to preserve traditional prejudices and dichotomy “normal/abnormal”

3.Even though new positive representations (e.g. “alien creatures”, “sun children”) challenge the traditional medical discourse, they still contribute to the process of “Othering” and re-stigmatization, which distort the collective identity of people with disabilities

4. The emergence of the issue of disability outside the traditional headings and programs (“resonant” cases) facilitates the discussion and mobilizes the community of people with disabilities in the attempt to re-examine the boundaries of the “offensive” discourse

Critical theory and disability studies:

constructing the public sphere of disability issue

Volha VerbilovichValeria Markina

(HSE, Moscow)