Butterfly House: A Project Proposal for a Club Babochka Assisted Living Community

One of the most pressing problems in the special needs community of St. Petersburg, Russia is independent assisted living for young adults. This problem, of course, lies beyond the confines of St. Petersburg and affects the entirety of the Russian Federation, much of Eastern Europe and the former Soviet Union, and most of the developing world. The United Nations General Assembly in 2008 adopted the “Convention on the Right of Persons with Disabilities” which attempts to rectify the past denial of basic human rights and dignity to persons with disabilities. Several of the rights outlined fall directly within the scope of this project: the right to work (Statute 27.1.) the right to live independently (Statute 19.a,b.), the right to equal opportunity (Statute 3.e.) and the right to independent and personal choices (Statute 3.a.). The treaty was ratified by over 100 countries within a few years and its principles and promises are considered foundational to restoring this community’s God-given inalienable rights.

Russia ratified this treaty in the fall of 2012, and it took on particular significance not only because it represents a full reversal from past policies of Soviet times but, more importantly, because it obligates the government of the Russian Federation to uphold these rights. The constitution of the Russian Federation puts international law and treaties as the equivalent of Russian constitutional law – thus trumping any federal or regional laws or court orders that might disagree with or restrict the right of persons with disabilities in any area expressly stated in the treaty, including the right to work and independent living. Russia’s current prime minister, Dmitry Medvedev, and Russia’s president, Vladimir Putin, have expressed support for this community and its right to work.

However, progress in many areas addressed in the Convention has been slow. Surprisingly, St. Petersburg – considered Russia’s second capital- stands behind other poorer regions of Russia in providing the rights to work and independent living. Projects have been started in several Russian regions that enable young adults with disabilities to live and work independently. The most notable of these is the work done by ARDI “SVET” in Vladimir and the CLP in Pskov. In Vladimir workshops or daily activity occupy almost 50 young adults with special needs. ARDI “SVET” operates training apartments for dozens of young adults with disabilities and recently opened a permanent independent assisted living situation for seven young adults. In Pskov workshops run by the government provide guaranteed employment for over 100 young adults with disabilities. Likewise the CLP in Pskov run a training apartment and two permanent assisted living situations for 10 young adults with disabilities.

Other regions of Russia offer very little in comparison. Workshops that employ handfuls of young adults exist around the country and several farm/village style assisted living programs exist too, however none are even wheelchair accessible. Considering that according to official statistics over 13 million Russians live with some sort of physical or mental disability – all of the above programs – though seminal, have minimal impact when compared to the need.

Although St. Petersburg offers more programming and support for these special-need families than many other regions there is to date no assisted living training apartments or permanent living situations. There are only two situations for the mentally disabled – a government apartment with 12 residents and a village community outside the city. GAOORDI and Perspectivy – the biggest and most effective NGOs for children and adults with disabilities have workshops and daily activity centers that “employ” about 50 and 30 respectively, although only Perspectivy works with the severely mentally disabled who also have physical disabilities. The primary effort of the local government has been developing post-school, pre-professional training programs. These programs are a significant step in the right direction, however as educational institutions, according to their charters, they cannot provide permanent employment or occupation. Despite graduating from these specialized training programs, almost all of these young adults face a future of inactivity (and often physical deterioration) because there are no jobs available for them in the city.

Club Babochka wants to address this shortcoming for its own community. For over 10 years Club Babochka has worked with the families of children with disabilities in St. Petersburg. These disabilities range from limited physical handicaps to extensive physical and mental disability to the point where communicative speech and any controlled motion is impossible. Although the program initially hosted only a summer camp for these children, a winter camp session was soon added, and the program has now become a year-round social club and supportive community for the “kids” and their parents. Kids must be written in quotation marks because in the ten years since Club Babochka was founded these kids have become young adults. Tragically, due to a lack of opportunity and education, both their parents and society have continued to treat them only as children. In the past few years it has become particularly evident to Club Babochka leadership that progress in these young adults lives in the vital spheres of holistic physical, emotional, social and spiritual well-being. Development has stalled or been done as the participants leave school and are mostly confined to the walls of their apartments. This is a disempowering way to live – under constant care and supervision by parents, unable to work, continue education, or make independent decisions, creating a trajectory of hopelessness in their lives.

Basic psychology teaches that human beings need four things for happiness – love, faith, hope and meaningful labor. Unfortunately for most of the young adults involved with Club Babochka, their rights are infringed upon in almost all four of those areas. Society (and sometimes even their wellmeaning families) struggles to love and accept them. There is no meaningful work. The lack of independent living options undermines their abilities to have faith, purpose or hope. This project, developed to address these problems in a nuanced manner, proposes a radical departure from current, ineffective practice. Providing independent working and living possibilities for these young adults with disabilities, will give them the possibility to be fully functioning and independent members of society. It is the hope of Club Babochka that someday this proposal will seem absurdly modest in its attempts to rectify a history of human rights abuses against this community.