Cassandra Hartblay
Masters Candidate, Predoctoral Student
Department of Anthropology
University of North Carolina at Chapel Hill
SDS 2011 Presentation Draft Text
Horizons of possibility: ethnographic insights into
parent-activist strategies in contemporary Russia
What kinds of possibilities exist for parent activists working to create a more inclusive
world for children with disabilities in Russia today? How do the specificities of the
postsoviet context impact the horizons of possibility for these parent activists? How do
postsoviet cases illuminate issues that resonate with disability studies more broadly?
[Image: MAP OF RUSSIA]
I.
The Soviet Union, although hailed worldwide for its accomplishments in national
education, did not offer special education of any kind in its schools. Through 1991,
children who were deemed unable to participate in classroom learning were simply
excluded from educational opportunity. Particularly in the Soviet context, wherein
being a good worker defined the good citizen, this lack of educational opportunity
meant extraordinary stigma not only for the child, but also for the parents, whose
productive capacities were put on the line when a child was reject from schooling. A
vast system of decentralized regional institutions and internati (residential
rehabilitative facilities) were the states’ solution. With the fall of the Soviet Union in
the 1990s, mothers around Russia began to vocally and visibly refuse this system of
institutionalization. However, 20 years later in 2011, a federal system of special
education has yet to be implemented in public schools. [Image: SOVIET/PS HISTORY
TIMELINE]
The postsoviet case can be characterized by several qualities that are distinctive in the
global context:
-industrialized definition of disability aligns with the west, while the political
climate (and language of disability) both does and does not (see: Phillips 2009,
2010; Kotkin 2001; Hartblay, forthcoming)
- New models for education and inclusion are being brokered on the ground at
the grassroots level. The case studies that I relate in this paper indicate three
trajectories that these new imaginaries take in one Russian city.
As a graduate student equipped with a new research grant, a history of disability ally
activism at home, and a background in Russian studies, in the summer of 2010 I
embarked on what will become the first of many dissertation research trips to
Petrozavodsk, Russia. The city itself is familiar to me, the first place in Russia that I
called home, when I lived there for a month as a high school exchange student. In
many ways, PZ is an exceptional city: a small regional capital, its residents have a
greater access to cosmopolitanism and international ideas than similarly sized cities in
more remote regions. PZ, located a day’s bus ride from Finland, or an overnight train
ride from Saint Petersburg, is home to one of the most progressive and highly admired
regional administrations in Russia; the liberal social democratic influence of its Nordic
neighbors evident at every turn. [Image: MAPS SHOWING LOCATION OF
PETROZAVODSK]
I chose to return to PZ because I had heard through a lobbying listserve that a parent
group there had distinguished the region by becoming the first group in the Russian
Federation to use the legal rights guarantees of the 1993 constitution to claim inclusive
education through the court system. Given the currency of Western debates about rule
of law and civil society in postsoviet Russia, the idea of a grassroots movement that
had mobilized successful legal outcomes was exciting not only to me as an
Anthropologist interested in Disability justice, but also to political scientists,
economists, and those concerned with what is commonly referred to as Russia’s
transition to democracy. [Image: NEWS ARTICLES REPORTING ON TRIAL OUTCOME]
Of course, on the ground, the reality is never as simple as the newspaper story. As I
began conducting interviews with community stakeholders in Petrozavodsk, I found
that there were several contrasting strategies in play when it came to raising children
with disabilities – all of which contributed to deinstitutionalization of citizens with
special needs – and only some of which engaged rights-based claims to justice. [Image:
PHOTOS OF STAKEHOLDERS]
My own background as a peer-advocate and organizer of disability awareness
campaigns throughout my secondary and tertiary education in the United States has
also buttressed my investigation of similar topics in Russia. Having worked as a peer
tutor and paraprofessional in special needs classrooms in US public schools, I approach
this work with a certain degree of familiarity with the kinds of challenges, questions,
and struggles that arise in educational settings. And having worked as a paralegal for
adults seeking disability benefits through the Social Security Administration in Queens
County, New York, I have seen and participated in the despondency of bureaucracies of
disabilities in the United States, leaving me highly critical of tendencies in mainstream
press and some scholarship to pathologize corresponding postsoviet bureaucracies
(that is, I do not accept unexamined the idea that the Russian government rules with a
dehumanizing iron fist).
The particular perspective of disability that I take here takes cues from the particular
stance that I take between scholarly literatures. First, as a scholar of disability studies, I
am concerned with questions of justice, stigma, and equality as they pertain to bodily
and intellectual difference (Linton 1998), to normalcy or hegemony of the center (Davis
2006), and continue to present a challenge to the establishment of a fully functioning
liberal democracy in the United States as well as in Russia (Nussbaum 2007). Second, as
an interpretive medical anthropologist, I seek to contribute to a body of work that
interrogates categories of diagnosis (Young 1995, Lock 1995, Cohen 1998); by
juxtaposing the meaning of disability (as a type of difference, and a nexus of economic,
medical, and social meanings) in Russia with that in US, I seek to destabilize and
defamiliarize both in order to open up new ways of conceptualizing enablement (see:
Phillips 2009; Hartblay 2006). Similarly, the anthropology of disability considers the
ways that “cultural circumstances (such as assumptions about personhood) and social
ones (such as the existence of disability institutions) shape the meaning of disability in
different local worlds” (Ingstad and Whyte 2007: 1) so that disability becomes a lens
through which to view local subjectivities.
I conducted over 15 interviews and observed and visited parents of children with
disabilities, teachers of children with disabilities, professionals including social workers
and non-profit managers working in relevant fields, doctors, and young adults with
disabilities. For the sake of simplicity, I will use the stories of three distinct members of
the community to illustrate broader trends, using pseudonyms to protect their privacy.
[Image: LIST OF NAMES USED IN CASE STUDIES]
Taken together, these case studies suggest the scope of different experiences of
families with children with disabilities and the ways that these experiences align with
and depart from various expectations of emancipatory progress.
II.
Nina [Image: DIAGRAM of Nina’s trajectory]
Nina is mother to Sveta, who was born in the late 1980s and diagnosed with Cerebral
Palsy. Nina was advised by the doctor to institutionalized Sveta and never look back,
but she refused, and with the help of her own mother, raised Sveta on her own. In
those days, there were no parent networks in Petrozavodsk, and almost no literature
on parenting disabled children available in Russia: Nina’s mother spent 40 minutes
copying the definition of DTsP (Cerebral Palsy) by hand out of a medical dictionary,
which, along with the list of various diagnoses that the hospital handed over when
Sveta came home for the first time, was the only information that Nina had.
Today, Sveta is a patient, quietly attractive and studious college student in a
wheelchair, a far cry from the grotesque permanent child that the doctor predicted.
This outcome is due to many factors, chief among them Nina’s stubbornness, as well as
several turns of fate. Nina has struggled to find workable solutions to work full time as
a high school teacher while negotiating Sveta’s medical, educational, and
transportation needs. She doesn’t consider herself an activist, and when asked about
progress, her first response is bitter skepticism. Working with other parents is
exhausting and stressful she points out, and the federal and regional governments have
little interest in acutally making change, rather than occasionally paying lip service to
accessibility as a sort of international PR.
Lilya [Image: DIAGRAM OF LILYA’S TRAJECTORY]
Lilya was born with a series of health problems; over the years she has been able to
maintain mobility with the help of a series of operations. Today, a 24 year old
journalism student at the regional public university, she walks with a cane, and unlike
the majority of her peers, avoids public transportation and gets around in a car – a
small sedan dating from the 1980s that has been retrofitted with an apparatus to allow
her to control acceleration and braking with her hands.
Lilya, as a young teenager, became a beneficiary of the programs that grew out of the
parental exchange program in which Nina participated. As a result of that exchange, a
local woodshop teacher at the city’s cultural center – where many young people went
for after school activities – took up a new initiative to work with youth with disabilities.
Tapping ideas emergent from the exchange, the shop teacher, who I will call Oleg, and
his wife Nastya, a school teacher, chartered a series of grassroots programs to support
kids with special needs and their families.
Lilya became one of a group of five youngsters with whom Oleg started an online
journal that shared the perspectives of youth with disabilities. The journal was
supported with the computer equipment donated to the cultural center during the
exchange program, and a few subsequent grants from benefactors in Finland and
Germany. Lilya has become a leader amongst her peers in terms of serving as a
resource for parents with young children with disabilities. She drops in for visits,
provides advice, impromptu childcare, and encouragement.
Oleg, with Lilya’s help, organizes a weekly group for families with disabled children.
Again with the help of modest foreign grants (rarely for more than a few hundred
dollars) they have a “school”, the first floor of a local building, in which the collective
gathers on Sundays for tea, lessons, art projects and music lessons, physical therapy
and massage for the cerebral palsy kids, and tea and conversation for the parents. The
support space, according to Oleg and Lilya is not only about parents supporting one
another, but also a space for spurring action. They consider the activity of taking the
children for walks or outings to local museums to be one with sociopolitical
consequence. “It’s important that people see these kids out and about,” Oleg told me.
“How else will we ever make it ok to have a family member with disabilities?” They
partner with teachers at local high schools to recruit teenagers to work at a summer
camp for the special needs kids.
Oleg and Lilya are wary about new mainstreaming initiatives in place in Petrozavodsk.
Even if these kids are sitting alongside their peers in classrooms, they point out, it does
not mean that they are learning; even with a fulltime facilitator present, integration
and education may not occur.
Katya [Image: DIAGRAM OF KATYA’S TRAJECTORY]
Katya is the leader of the group of amateur parent activists who have partnered with
Finnish disability activists and civil rights attorneys to claim a legal right to education in
public schools for their children. She has a seven-year-old daughter with DTsP. Prior to
Katya & company’s lawsuit, their children – including children who are Deaf, blind,
have DTsP and Downs Syndrome – were only able to attend the local rehabilitation
center founded by one of Nina’s peers, which accepted children on a rotating three
month schedule, meaning that the kids were then left at home all day without services
or socialization for long stretches of time, sliding backwards developmentally and
placing a burden on mothers to abandon professional work in order to care for them.
They won a lawsuit first to include the children in local kindergartens, and subsequently
in two primary/secondary schools in the region, allotting a portion of federal
development money to sponsoring the integration projects (and thereby keeping the
educators on board).
Katya recalls that part of their success came from their ability to align their claims with
some of the transition rubric that is popular in the area. The turning point in the first
lawsuit came when the mothers held a press conference and invited all the local media
to come take a look at them and photograph them with their children. The next day,
Katya recalls, all the newspapers and local television stations reported that children
with disabilities were being left behind in Karelia. This story fit cleanly into what Sarah
Phillips has called the “critical discourse” in which disability activism language is
harnessed to build on and align with broader conversations about becoming more
progressive, more people-first, more rights-based and attendant to rule of law, and
generally more like the West.
Katya herself is not particularly concerned with this agenda. In addition to wanting
better opportunities to her daughter, she has stopped her work as an accountant to
pursue activism full time (which is enabled by her husbands’ well-paying job, a situation
that would have been unthinkable in the Soviet days, or even in the 1990s when Nina’s
daughter was young). Like the “NAMI Mommies” here in the US, who Sue Estroff has
pointed out gain a sense of self-worth and a new cultural currency through parentactivism, Katya has taken on the sense of purpose that activism provides. With local
partners and Finnish mentors, her group of parents is working to mount new lawsuits
to make the city train station more accessible, and they have already successfully sued
to make a theater that was under renovation include accessible restrooms and seating
to accommodate wheelchair users.
III.
Given these case studies, let us back up a bit and talk a little bit more about the Russian
postsoviet context.
-poverty is not a vice [Image: QUOTE FROM CALDWELL 2004]
-different dimensions of public/private, autonomy/dependency [Image: GRAPHIC
ILLUSTRATION OF AXES OF NEOLIBERAL CITIZENSHIP]
-zone of diverse economies and subjectivities, rather than a realm in “transition”
toward neoliberal governmentality [Image: DIVERSE ECONOMIES “ICEBERG”
(Market Capitalism is just the tip) from Graham 2001)]
-continually evolving possibilities for disability activists, although touted by
government and Russia transition watchers as successes, do not align neatly with
the goals or even yardsticks of success held by outsiders. However, they are
successful in finding globally brokered local solutions and transforming lives and
human possibility. [Image: QUOTE FROM NEWSPAPER ARTICLES vs. QUOTE
FROM NINA]
What, then, does this critique of transition discourses call for? Critical scholars of
disability studies (Mitchell and Snyder 2010) and of development discourses (Cleaver
1996:236; Esteva; Fraser 1997) have observed that while liberatory movements have
traditionally been tied to socialism, increasingly, there is a necessity to look to look not
to one political economic form or another (Escobar 1992: 133), but to diverse
economies (Gibson-Graham 2006), complex global assemblages (Collier and Ong 2005),
and deterritorialized descriptions of local-global spaces (Deleuze and Guattari 1972;
Yurchak 2006). In this sense, the way that relationships with local, regional, national,
and international resources are brokered by actors on the ground in Petrozavodsk may
be illuminating for our considerations of futures, and emancipatory imaginaries that go
beyond the tip of the iceberg. [Image: DIVERSE ECONOMIES “ICEBERG” (Market
Capitalism is just the tip) from Graham 2001)]
Following both critical anthropologists of the postsoviet and critical scholars of
disability studies, such as Mitchell and Snyder and Tom Shakespeare (who has critiqued
the idea that rights alone, such as the use of civil legal frameworks to claim education,
will bring about new justices for people with disabilities and their families) I find in
these case studies an opportunity to open new imaginaries of emancipatory projects.
By displacing the primacy of neoliberalism and democracy as the yardsticks by which
we ought to measure the activities of citizens, or the progress of disability activism, we
find more nuanced and rich possibilities that indicate a diversity of potentials that need
not align with expected categories and binaries, ideal types or hegemonies of the
center.
By looking at case studies from the postsoviet context as deterritorialized realities, we
approach assumptions about where trajectories of activism lead and what horizons of
possibility look like. For Nina and her daughter Sveta, horizons of possibility are not
“activism” per se, but transformational change continues to unfold in fits and starts.
For Oleg and Lilya, rights-based claims to inclusive education offer new potentialities,
but an equal host of new problems, and overshadow numerous grassroots successes.
For Katya, activism offers an opportunity to create a new and exciting career that puts
her at the forefront of critical political change in her community, brokering cultural
capital that extends beyond the direct benefits to her daughter’s educational
opportunities, and building international friendships; disability organizing becomes a
vehicle by which to push the regional administration toward a people-first politics.
None of these trajectories match neatly the binaries of transition discourses. Likewise,
the futures they suggest help us to bring postsoviet perspectives into conversations
about the diverse nature of emancipatory projects for disability justice.
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