Image: Logo in black an yellow depicting a cyborg-looking human/creature with wings.
Last week I attended for the second time the Hungarian Disability Studies conference at the Faculty of Special Needs Education, ELTE Eötvös Loránd University, Budapest. This sixth conference was themed ‘Diversity as a social value?‘ and speakers discussed disabled people’s position in Hungarian society from several perspectives.
Dean Péter Zászkaliczky opened the conference by contextualizing the current political situation where politicians decide what universities can and cannot teach. Recently, the government decided to ban gender studies, while approving the faculty’s new disability studies master’s programme. It is quite obvious that the education ministry does not know about the intersectional nature of these subjects…
The first keynote speaker was Professor Tom Shakespeare, who shared results from a recently finished project on personal assistance relationships. The theme of his presentation was Power, ethics and emotions. I recognised a lot from my PhD study on personal assistance services in Sweden and how sexual facilitation was handled, because much of it concerns underlying processes of exactly that: power, ethics and emotions, irrespective of what tasks are discussed (although the topic of sexuality seems to evoke particular emotions and ethical dilemmas).
On the issue of relationship characteristics, Shakespeare said that:
We don’t want a master-servant relationship but something that is more empowering for both. There’s more complexity than someone just asking someone else for a service.
In other words, there are complex power dimensions at play affecting both parties. Having a personal assistants around, perhaps as much as 24 hours a day, means diverse things for disabled people: someone who is ‘arms and legs’, a robot, like a family member, or a friend. These metaphors often conflate the complexities and are not talked about, resulting in tensions, different expectations, and so on. Shakespeare therefore argued that this emotional work in the relationship needs to be acknowledged and managed – on both parts. Boundaries are crucial to manage expectations from both parties. Although conflicts are common they can be managed with more clarity and agreement. Both parties would benefit from training to better handle these processes.
Shakespeare concluded that PA works and needs to be widely implemented for disabled people to achieve independence. The challenges to that in the Hungarian context was discussed in the panel discussion that followed between Shakespeare, Dániel Csángó (participatory teacher and assistance user), Zsuzsanna Antal (participatory teacher and assistance user), Dr Anett Maléth (lecturer), and Elek Fazekas (Helpific Hungary).
Photo of the panel.
Tom argued that institutionalisation costs more than employing PAs in the home and that Hungary should do an experiment to explore the costs. However, many Hungarian disabled people live in the family home due to lack of accessible housing. Currently, Daniel and Zsuzsanna are two of the very few people in Hungary that employ PAs, which they can do because of personal savings. Due to the shortage of workers and lacking formal systems for PA employment, the situation is precarious. Daniel defined personal assistance as meaning freedom and fear. Freedom to live independently and participate in society with self-determination – while he feels simultaneous and constant fear of losing the means to privately pay for his assistance, with the result of being institutionalised, as many disabled people are in Hungary. Although there is a legal framework on PA in place there is a lack of political will to invest in implementing it.
In the afternoon I attended the gender-themed session. I listened to a presentation by Eszter Pechan and Sándor Gurbai on ‘Sexuality, Parenting and Abuse in the Lives of Institutionalized Women with Intellectual or Psychosocial Disabilities’. They shared terrible stories from institutionalised women’s lives: how their reproduction was controlled, their children taken away, self-determination limited, and so on. I also learned about the concept of ‘intimacy room’. Because most institutions do not provide private rooms to its residents, there is often a separate room available to loan for one’s intimacy needs. However, the key often hangs in the common room, allowing everyone to see who takes it, or it needs to be asked for from the staff office, hence limiting privacy.
It’s great to see how the conference has grown from last year, when there were no parallel sessions, and the growing attendance rate as well. With the addition of a master’s programme in Disability Studies the discipline can develop even more. I’m hoping to be able to attend every year, since it’s also an opportunity to visit my Hungarian family and relatives – a perfect combination of business and pleasure!