When people ask me how I started to work with disabled people’s organisations, my usual answer is that it was an accidental choice. As a skint university student of Hungarian literature and linguistics in Budapest in 1999, I needed a job so I ended up working as a part-time personal assistant to people with severe and multiple disabilities at a community rehabilitation centre. Perhaps not an obvious choice for many students, but I loved that job – this is where I got stung by the bug of disability. I made good (disabled and non-disabled) friends at this job and I learnt a lot about what it means to be living with additional support needs in a society that maintains so many barriers. In hindsight, I think people I supported as a personal assistant taught me about the social model of disability – a theoretical framework I only read about many years later.
Ever since I have worked for and with disabled people’s organisations (DPOs) or for public bodies covering disability policies. Throughout those years, I saw myself an advocate and not a researcher. But then, few years ago, I started a doctoral programme at the University of Kent’s Tizard Centre and it brought a major turn in my professional life. Today I consider myself not only a disability advocate but also a researcher who is interested in doing research that provides data and evidence to advocacy efforts of DPOs. Here is some of my work related to community living.
In 2009-2010, when I worked in Budapest for a national umbrella speaking for autistic people and their families, we launched a countrywide research project that looked at various issues such as the needs of families of autistic people, the lack of community services etc. Under this research, I did interviews with leading advocates and public policy makers to assess how parent and professional advocacy influenced autism policies in Hungary between the 1990 and 2000s. Unfortunately, the report of this project is only available in Hungarian.
Later, in 2012, as human rights officer at Mental Health Europe (a Brussels-based umbrella NGO advocating for people with mental health problems) I was co-author of the research report Mapping Exclusion – Institutional and community-based services in the mental health field in Europe. This was an international research project that collected data from 32 countries about national mental health policies and services. The survey included information about the basic human rights of people with psychosocial disabilities, such as laws about legal capacity and policies covering involuntary hospital admissions. Today, this report is outdated but if you are interested, you can find it here. However, if you are interested in recent, and more nuanced data on 30+ countries’ mental health services, read the new version of this report titled Mapping and Understanding Exclusion – Institutional, coercive and community-based services and practices across Europe (2018).
In 2014-2015, we conducted a study (led by Agnes Turnpenny née Kozma) that assessed the evidences emerging after the first phase of the Hungarian government’s deinstitutionalisation programme. We analysed policy documents and made interviews with DPO representatives, as well as EU and Hungarian government experts who were involved in the programme. We also visited institutions and collected data with the help of residents of care homes. We found that the first wave of closures of institutions in Hungary was already mostly unsuccessful, marked by lack of coordination and difficult bureaucratic rules on the policy level; a strong focus on infrastructural issues instead of users and the building of group homes and small institutions on the project level; and very limited involvement of DPOs and residents in monitoring and the implementation of projects. You can read the English summary of the report (2016) here.
Between 2015-2018 I worked on my PhD that looked at the involvement of self-advocates (people with intellectual disabilities and autistic people) in the broader disability movement. Although this issue does not seem to be related directly to the independent living movement, it is still very important because the slogan ‘nothing about us without us’ would require that all disability groups lead and control advocacy organisations speaking for them. Arguably, this is not the case for autistic people or people with intellectual disabilities who are still represented in most disability organisations by parents and professionals. My study looked at issues that help and barriers that hinder self-advocates within the disability movement. Some main findings can be read here and you can read the full (very long!) dissertation here.
In 2017, related to my PhD, I also wrote an article that presented evidence about the lack of involvement of autistic people and people with intellectual disabilities in the disability movement. In this paper, advocates and self-advocates agree that there is a lot of work to be done in most organisations to step away from tokenistic practices and give real power and support to exercise this power to autistic self-advocates or self-advocates with an intellectual disability. The article also shows evidence that human rights laws and policies are usually seen as distant and ineffective for most advocates and self-advocates. The article can be read in English here.
I met ENIL’s former researcher, Teodor Mladenov in 2016 and soon we realised we share an interest in Central and Eastern European countries’ disability policies. Our shared interest (and many fascinating conversations) led to two co-authored articles that were both published in 2019. These pieces look at post-socialist countries’ disability policies by analysing data on deinstitutionalisation in Bulgaria and Hungary. There are interesting similarities in how governments in both countries seem to be working on deinstitutionalisation but in fact what they implement is more akin to a large-scale renovation of their residential social care systems. Under human rights banners, new (albeit smaller and usually nicer) institutions are being built by using European Union funds in both countries. If you are interested, you can read these papers here and here.
Currently, I am working on a research project that looks at the changing and new mechanisms of the marginalisation of disabled people in Hungary. I also have future research plans: I am increasingly interested in the history of disability policies in the late-20th Century in Eastern Europe. My upcoming articles this year will include two papers about autistic and learning disability self-advocacy. The first one will offer new theoretical perspectives to the definition of self-advocacy. The second article will present evidence that autistic people and people with a learning disability are marginalised in the disability movement also due to economic or financial reasons such as poverty, unpaid work, and lack of resources.
Gabor Petri is an Honorary Lecturer at the Tizard Centre, University of Kent and a member of ENIL’s Independent Living Research Network (ILRN). This article is the first in a series of articles introducing members of ILRN, with th aim of promoting existing and upcoming research on Independent Living.