Cassandra Hartblay discusses disability rights in Russia
Dr. Cassandra Hartblay, an Assistant Professor of Anthropology and Health Humanities at the University of Toronto, sat down with Dr. Robert Austin and a group of CERES students to discuss her work, “Complicating Disability Rights in Russia.” Dr. Hartblay explained that she wrote this article to capture the results of an ethnographic study she conducted in Petrozavodsk, Russia. It was there that she sought to understand how individuals with disabilities in Russia experience everyday life, in light of the way the Russian government and its citizens understand disabilities.
Her research supports global human rights findings that Russian citizens with disabilities experience a number of barriers to participation in social and political life (e.g. HRW). These barriers can range from material inaccess such as inaccessible bathrooms or unsafe ramps, to societal challenges, including difficulties in acquiring a job due to the stigma surrounds disabilities. She affirms that disabilities are largely relegated to the private sphere. Indeed, individuals with disabilities or those with family members that have disabilities are often forced to find ways of addressing and accommodating their special needs on their own. For instance, a parent with a child that has a disability must either hire a nurse to care for their child while at school, or otherwise take time off work to do so themselves. Evidently, this means that families must take on a huge economic burden. To make matters worse, most schools along with other public institutions are outdated and lack basic aids, like elevators. And according to these Russian citizens, that’s exactly the problem. They need the government to start removing the obstacles that typically prevent individuals with disabilities from engaging in society as any other citizen would.
Yet, Dr. Hartblay argues, the framework of rights as a pathway to justice for people with disabilities is complicated in the Russian context. Scholars and advocates must recognize that rights-based strategies rely on the government to implement change; however, in the Russian context, trust in the government to follow through on rights is low. While conducting interviews with residents of Petrozavodsk, she notes that they are frustrated because the government does not even consult people with disabilities when seeking to design services or aids that are supposed to be tailored to their needs. Thus, citizens often do not receive the accommodation they need where they need it or are accommodated in name only, such that aids are provided but are unsafe or inaccessible to those with disabilities.
However, Dr. Hartblay asserts this project is more than a research article. With the permission of the Russian citizens she interviewed, she transformed her findings into the ethnographic play titled, I Was Never Alone. The play, brought to life by actors with disabilities, was staged at the University of California, San Diego and Yale University. I Was Never Alone seeks to share the experience of “living with mobility and speech impairments in Russia.” Hartblay clarifies this play was not designed to act as a form of therapy, but rather intends to raise awareness and bring these experiences and their causes into the spotlight. In essence, the play makes the invisible and often disregarded, visible and engaging.
With that in mind, North American audience members identified with the experiences of these Russian citizens. To be more specific, audience members with disabilities felt that they underwent similar situations in their own lives. The key takeaway here, Hartblay reminds us, is that it is easy to assume these obstacles exist in Russia exclusively, but we should not forget to look at our own societies, because accessibility issues are still largely present at home.
by Lisa Irimescu, CERES MA candidate
