To sit under the rain
Dear Debriefers,
Greetings from a non-disabled academic based at Scotland’s bonnie University of Dundee!
Although I am “non-disabled”, a lot of what I am and what I know I owe to disabled people fighting for independent living. For me it all started in my home country of Bulgaria.
But independent living itself, now global in its reach, originated in the United States in the 1960s. It is a philosophy, a social movement, and a way of organising support for disabled people. The central idea is that disabled people should have choice and control over their lives, which includes being in control of the support one needs in everyday living.
Independent living has been transformative for many disabled people. Its ideas underpin the United Nations Convention on the Rights of Persons with Disabilities, particularly its Article 19 on “living independently and being included in the community”.
But the movement and philosophy are not only relevant to disabled people. They can also have a profound impact on non-disabled folks like me. In this article, I share the stories of how I learned about independent living and how I now grasp the world through its lens.
About this edition
Original writing like this is made possible by support from readers. Thanks to Jessica and Katherine for new contributions.
Teodor Mladenov is a Senior Lecturer at the University of Dundee, UK.
Kinanty Andini is an illustrator and digital artist from Indonesia.
“Make her understand that she is not at home”
In 1997-1998, I worked part-time as a ward attendant in a closed psychiatric hospital in Bulgaria. I did night shifts to be able to simultaneously pursue a psychology degree at Sofia University.
I still remember vividly one occasion when the psychiatrist on duty admitted a new patient. The patient had brought with her a set of colouring pencils, which the psychiatrist decided to confiscate. Could it be for safety reasons?
Knowing that I was a psychology student, the psychiatrist approached me after the admission and explained:
“When you go to someone else’s house, you take off your shoes, don’t you? That is why I am taking away her pencils – to make her understand that she is not at home.”
I retorted: “Will you let her keep her shoes?”
Asserting authority
The psychiatrist’s remark reveals that confiscating the pencils was intended less to manage risk than to assert authority.
For the psychiatrist, the hospital was her territory, where she dictated the rules. She intentionally stripped the patient of personal comfort to reinforce the patient’s subordinate place within the institutional hierarchy.
Later, I noticed with relief that the patient was allowed to retain her pencils. But I see this event as a telling example and I use it to introduce the critique of professional power that I develop in my book Critical Theory and Independent Living.
Although I was critical of biological psychiatry and institutional care even before my time as ward attendant, I was only able to fully articulate this critique after engaging with the Independent Living Movement’s struggle for deinstitutionalisation.
A centre for independent living in Bulgaria
The Centre for Independent Living – Sofia was the first organisation of its kind in Bulgaria. It was founded by the disabled activist Kapka Panayotova in 1996.
The Centre was led by disabled people, who also had majority on the governing body. Yet it employed both disabled and non-disabled folks like me.
In the 2000s, most independent living organisations in the United States – the country where the movement started – were already mainly concerned with service provision.
The Centre in Sofia also provided services to disabled people, but unlike its US counterparts at the time, its primary focus was advocacy and campaigning.
Kapka was adamant about this orientation. For her, the realisation of independent living in Bulgaria required deep legislative, structural and attitudinal changes rather than merely better-managed services.
Personal assistance and protest marches
I joined the Centre in 2000. The organisation was buzzing, with two offices and over 30 staff on full time contracts. Following a key principle of the independent living philosophy, the organisation supported people with all kinds of impairments, including physical, sensory and intellectual.
The Centre operated its own personal assistance programme, peer support groups and counselling services. I helped set up a nationwide capacity building programme for disabled people’s groups and organisations. I also conducted disability rights research. We advocated for legal reform, organised conferences and held protest marches.
These activities were funded by foreign donors, including a programme of the Dutch Government that supported countries seeking to become members of the European Union. However, when Bulgaria joined the EU in 2007, foreign support for the fledgling Bulgarian civil society dried up.
This meant that the Centre had to radically downsize and it entered a period of chronic underfunding. Its critique of the Bulgarian Government’s disability policy made it difficult to secure support from the national authorities.
How can they be independent?
A couple of years after I started working for the Centre, a colleague from my psychology years was also hired. He wondered how a person can be independent if they are obviously dependent on other people in their everyday lives. I was unsettled by the question but only later understood how to respond.
For my colleague, “independent” meant coping without support or being self-sufficient. This perspective fails to recognise supports used by most people (like home delivery or public transport) while noticing other kinds of support (like help with getting dressed) as signs of “dependence”.
However, from the perspective of the Independent Living Movement, to be independent does not mean to cope without support. It means to have support that helps you have choices and control over your everyday life – for example, a personal assistant who helps you get dressed according to your preferences about what and how to wear.
I am now firmly convinced that the independence of all people – disabled and non-disabled alike – is grounded in inter-dependence that enables individual autonomy. To use the previous examples, one lives independently to the extent that one’s dependence on home deliveries, public transportation, or personal assistance enables choice and control.
It took me a decade of collaborating with Bulgarian independent living activists to internalise this insight. Among them, the person who changed me most was Kapka Panayotova.
“I will wipe the floor with them!”
To say that Kapka disapproved of residential institutions, daycare centres and care professionals (particularly pencil snatchers) would be an understatement. One of the expressions she used when talking about patronising “experts” was “Shte gi popileya!”, which roughly translates into English as “I will wipe the floor with them!”
Some context is needed here.
Like many other Central and Eastern European states, Bulgaria was a state socialist country until 1989. The cult of the productive worker meant that the socialist welfare system approached disabled people primarily as medically deficient and economically inefficient labourers. This resulted in the proliferation of forced treatment, institutional confinement and paternalist care practices.
When the regime collapsed, it was replaced with liberal democracy and market economy. But the legacy of state socialist disablement has been astonishingly resilient and is still felt today, as I explain in my book Disability and Postsocialism.
Kapka’s desire to “wipe the floor with them” was often sparked by this inheritance, as embodied by the psychiatrist from the beginning of this story.
Paternalist approaches from disability organisations
But Kapka’s anger was not just for non-disabled professionals silencing disabled people. She was even more suspicious of disabled people’s organisations “representing” the disability community – both those established during state socialism, and the ones founded after 1989.
Kapka helped me understand that traditional disability organisations can be a key barrier to disabled people’s independent living when they support paternalist approaches in disability policy and service provision. Moreover, coopting the “representatives” of disabled people in official consultative bodies like “national disability councils” can cement the status quo of disablement.
As well as loving freedom, Kapka was able to transform this passion into courageous action and insightful critique of paternalism and medicalisation dominating mainstream disability policy. I have witnessed this remarkable ability in only a handful of other activists (most notably, Adolf Ratzka).
Challenging entrenched power
I learned more about independent living from Kapka’s graceful audacity in challenging entrenched forms of power than from all the academic articles and books I’ve read as student and lecturer.
She was a master of egalitarian care, which I define as caring based on equality and respect for the other’s autonomy and voice. That said, I suspect she would disagree with the term – the Independent Living Movement avoids the word “care”, especially in the context of adult support services. Many disabled activists consider it patronising, steeped in traditional approaches to disability.
I and others were constantly learning from Kapka’s courage to criticise, passion for freedom and policy insights. Yet she never stopped asking for advice or feedback. Once she asked me for a reference for a fellowship application to Yale University. (Yale did not accept her, which is their loss.)
When she died in October 2022, I lost a spiritual mother.
To sit under the rain
The Centre in Sofia transformed many people’s lives. As part of an assessment of its assistance programme in 2004, I witnessed the sheer intensity of these transformations.
One of the disabled participants in the programme, Borislav Vachkov, used to say that one needs to go out to be seen by God. He told me:
“Do you know the happiness I experienced at the very start of the programme – I had just started to go out more often. We were at the NDK [the National Palace of Culture, located in the centre of Sofia], it was summer, and a hard rain started falling, a summer one, of the kind with the big drops that make bubbles on the asphalt.
“I was sitting under the rain – I was so happy and joyful. And then I thought what a big thing it is to be able to let the rain fall on you. In brief, if I were at home, if the programme did not exist, I would not even be able to get wet by the rain.” (These and the following quotes are translated from Bulgarian.)
Difficulties in realising independence
As part of the same programme assessment, I also interviewed Vanya Pandieva, another personal assistance user and coordinator of the programme. Vanya lucidly explained the main difficulty in providing assistance to enable independence.
On one side, there was disabled people’s lack of self-confidence. Or, as Vanya asked, if someone is taught to be helpless, and routinely perceived that way, how can they then “ask another person to do something in the way that I want?”
And on the other side, the assistants tended to take over the authority of the person they supported. Vanya described this as inclination towards “a rather possessive, proprietary kind of care”. Echoing Borislav Vachkov’s experience, Vanya explained the paternalist impulse thus:
“If the [assistance] user wants to be out in the rain, should the assistant leave them unprotected under the raindrops, or shield them from it?”
“A prettier cage is still a cage”
I went on to see my Bulgarian experiences in an international context through a two-year research fellowship at the European Network on Independent Living (ENIL).
ENIL was founded in 1989 by Adolf Ratzka, John Evans and other luminaries, and since then has been the leading advocate for independent living in Europe. Kapka served as ENIL President in the 2010s.
At ENIL, I learned about two important ways that independent living can be misrepresented, and how these misrepresentations are major barriers to genuine autonomy.
The first of these is that, in many European countries, personal assistance has been routinely confused with home care, or even home nursing. This is the kind of danger that Vanya identified, about assistance becoming paternalist rather than empowering.
Home care is usually characterised by rigidity: schedules filled with predefined tasks and performed by staff chosen by the service provider. In contrast, personal assistance for independent living would be flexible, personalised support, in which the disabled person chooses their assistant/s and has control over the timing and the tasks performed.
The second lesson I learned at ENIL is that countries often present moving disabled people from big to small institutions as “deinstitutionalisation”. The EU has invested millions of Euros in such sham “deinstitutionalisation” programmes.
Bulgaria has been at the forefront of this reform fakery. Like many other postsocialist states in Europe, its past left it with a significant number of large residential institutions for social care. With the help of EU funding and under the banner of “deinstitutionalisation”, these settings have been replaced with smaller “group homes”.
However, although nicer on the outside, these new facilities reproduced the culture and practices of their large predecessors. Or, in ENIL’s words, “a prettier cage is still a cage”.
Interdependence and autonomy
In this article, I shared my journey with independent living as a concept and a movement: witnessing institutional violence, puzzling over the misleading obviousness of self-sufficiency, encountering people able to confront professional power, learning about the liberating potential of rain, and realising the dangers of independent living’s misappropriation at national and international scales.
The philosophy of independent living – and activists like Kapka and Vanya – taught me the importance of critically interrogating relations of support. People usually take for granted the benevolence of care, but it has a dark side too.
Disabled people’s experiences reveal how support can become a mechanism of domination rather than an enabler of freedom. The problem is not in needing support (we all do) but in having support dominated by professional authority, paternalist assumptions, and institutional routines.
This is a lesson that I think is important for us all, disabled and non-disabled alike. I share my memories of independent living because they offered me a way of understanding the world that values inter-dependence without surrendering individual autonomy.
May we all have the freedom to let the rain fall on us,
Teo
Outro
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Acknowledgements
Thanks to Kinanty Andini for the illustration of the person in the rain.
I also thank Peter Torres Fremlin for our discussions and for editing this piece, as well as Disability Debrief readers and supporters. I dedicate this article to Kapka Panayotova and Vanya Pandieva.