“This should not be happening”
Kedves Debriefer olvasók,
I’m a non-disabled researcher from Hungary. Five years ago, I was working in the Hungarian government, and I was pushed to resign because I criticised the government’s lack of attention to the rights of disabled people.
Since then I’ve studied how disability issues and disabled organisations are affected by democratic decline in Hungary and other Central and Eastern European countries. It is urgent that we understand what we can lose if illiberalism takes over countries with formerly stronger democracies.
When democracies weaken, disability rights are threatened in many ways. Protest is quashed, the media silenced, rights mechanisms hollowed out and it’s harder for disability movements to organise in a climate of fear and mistrust.
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Gabor Petri is a disability studies researcher at the Democracy Institute, Central European University in Budapest, Hungary.
Kinanty Andini is an illustrator and digital artist from Indonesia.
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“This should not be happening”
One Monday morning I was asked to join some superiors in a small meeting room. When we were walking toward the meeting room, one of them kept mumbling to himself, red-faced: “no, this should not be happening, no, this should not be happening”.
Soon I realised that I was about to face a politburo-style telling-off. I entered the room, my heart pounding. I’d seen this on film, but suddenly I was in front of one, and it was happening to me.
It was June 2020, and we lived under COVID-19 times: masks, sanitisers and evening curfews were part of our lives. I was working at a government agency as an autism policy expert. Three days before I had published an op-ed on a popular online news website: “Total failure: on elderly and disability policies that never were”.
The article, co-authored with an old friend and colleague, argued that Hungarian governments since 1998 have failed disabled and elderly people and this failure got ever more apparent under COVID restrictions. We wrote that the country had a responsibility to develop robust welfare policies to serve disabled people and elderly people who have been left without support for decades.
My bosses did not explain why the article was difficult for them to swallow. They simply asked me to resign from my position because what I wrote was “biased” and that I should not have published a piece like that at all.
Changes in freedom of expression
Friends had warned me ahead of publishing the article that I might get fired. But I had published opinion pieces critical of the government before in 2015, when I worked briefly for the same agency. Nothing had happened then. What changed?
Between 2015 and 2020, Hungarian democracy was in decline, and with it went freedom of expression. There were attacks on NGOs, obscure media laws and government media campaigns against intellectuals.
For a long time, my friends in the disability movement did not necessarily think that government attacks on democratic institutions would reach them. But then they did.
To understand the context of these changes, I’ll revisit the recent history of disability rights in Hungary.
Disability from socialism to a state of danger
Until 1990, Hungary was a single-party state-socialist country, part of the Soviet-bloc. I had a happy childhood then, and our working-class family lived well, but it was a system of political oppression: citizens had no chance to speak up or challenge the ruling party.
Only a few disability organisations existed in state-socialist Hungary, and even those few were kept under strong control by the state – disabled advocates only started to have a voice in the last decade of the regime.
From the 1990s, much changed. Mass privatisation led to rising inequality, surging unemployment and excess death. And at the same time the new free-market, multi-party Hungary started to call itself a liberal democracy. Like elsewhere in former socialist Central and Eastern Europe, civil society was buzzing with excitement after the democratic changes.
There was a surge in numbers of local and national disability organisations. This was not only an expression of liberal values – it was a necessity as many organisations were founded to respond to the needs of a society in crisis. Civil society soon found itself filling in the gaps abandoned by the state in a decidedly neoliberal democracy.
And in the same years, Hungary steadily adopted legislation on disability. Hungary adopted an advanced disability rights law in 1998, a non-discrimination law in 2003, then ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2007 – indeed it was the second country to ratify the CRPD in the whole world!
Democratic backsliding
Things started to change around the time when Hungarian prime minister Viktor Orbán delivered his speech in 2014 about a new era of illiberal democracy. In 2020 the government extended its power, arguing that a ‘state of danger’ presented by COVID requires a stronger response from the Government. As I write, we still live under an extended ‘state of danger’, now in reference to the Ukrainian war.
Over the past few years I’ve been able to study, with colleagues (disabled and non-disabled researchers and activists), how this democratic backsliding affects disability movements. We spoke with advocates in Hungary, Romania, Bulgaria and Serbia to learn about their experiences.
Where democratic backsliding was the strongest – like in Hungary and Serbia – disabled people’s organisations (DPOs) and other disability rights organisations have been under more pressure.
Expecting obedience
Some DPOs told us that they were ever more careful to criticise governments for their fear of repercussions – this we called 'self-censorship'. One of them, a veteran disabled advocate said:
“We do not tell fully our opinion. Yes, we know that we should not say this or that about a given issue, because it will blow the Minister’s fuse and then we will be deprived of our funding. And I think this is a fear of voicing criticism [of the government].”
We know that this fear of losing funding is not unfounded. Illiberal governments often cut off funding from those who criticise them. For example, many feminist and women’s rights organisations lost their funding in Central and Eastern Europe this way.
But there is a nuance here. State-funded DPOs that are too afraid to organise a street demonstration today are the same organisations that launched rallies twenty years ago. And they had funding from the government then too.
What happens in eroding democracies is that the intent of the government will change: they may expect DPOs and NGOs to be obedient. Governments use funding (or withholding funding) to silence or pacify those that could potentially criticise them.
And of course, not all organisations and activists react the same way. Some keep their mouth shut, others carry on. Some go closer to government officials and pretend they are friends, some of these even receive state awards in acknowledgement. Others continue to criticise the government and their politics and do not get invited to meetings or award shows.
Potemkin Committees
Like in many “democracies”, Hungary still has independent bodies and government platforms (supposedly) for citizens to influence policies. In fact, all countries we studied have similar bodies: they have ombudspersons, courts, disability advisory panels to the government and public consultations where DPOs can submit opinions.
We found differences between countries and some countries may do better than others. But where democracy is weakening, legal remedies and consultations are likely to hollow out.
Many disability rights organisations told us that they were part of consultative committees only on a tokenistic level. If they were asked, their opinions did not matter. Some felt that they were only consulted as a tick-box to legitimise government actions.
Advocates in Bulgaria called these ‘Potemkin committees’, referring to an 18th century legend about a Russian nobleman who built fake villages to convince the empress Catherine and foreign ambassadors that Russian people lived well. (They did not.)
In Hungary the National Disability Committee (‘OFT’) started to decline around 2018. For example, although a law mandated four meetings per year, there was only one meeting per year between 2020 and 2022.
A DPO representative said in 2022: “if it the National Disability Committee ceased existing no one would notice the difference”. This is how an important, human rights-based committee can become hollowed-out. The shell exists; but the inside is gone.
The pretence or fakery around disability goes beyond committees too. For example a Serbian advocate said the government responses to their requests are “not credible and always the same”:
“The first page is always copy-paste […], and on the second page, they claim that they are lacking authority or jurisdiction for a particular issue and they are then sending you to other institutions that may help. […] You can’t say they are not responsive, because they do respond.”
Bad news not welcome
Another venue that the disability movement loses access to is the media. This makes it very hard to reach the public and ask for support or just to report about disabled people’s lives. In the same way I got into trouble for co-writing that op-ed in 2020, other researchers have also faced backlash and intimidation for reporting or speaking to the media.
For example, one senior advocate of a DPO wanted to tell a state-run TV channel in Hungary about the financial problems their services face in a rural area. The editor of the programme said no, because bad news is not welcome in a state-funded media outlet. So, they only aired footage about the organisation, without mentioning their struggles.
Fewer protests and cracks in coalitions
These circumstances also challenge the way the disability movement can campaign and organise, activities at the heart of what makes it a movement.
Our study found that democratic erosion reduces DPOs' abilities to freely choose their campaigning strategies. They may be less likely to do street demonstrations, for example, because these would be perceived by governments as hostile actions, and DPOs are wary of retaliations.
Disability rights organisations may also lose opportunities to work together, or the ability to build coalitions. This is important for the movement because different disability groups with often very different demands need to work together.
For example, in 2011, the Hungarian disability movement formed a “Disability Caucus” and prepared a robust, joint shadow report to the CRPD committee, and published it widely. Guess what happened a decade later? In the 2021 CRPD review, Hungarian DPOs mostly reported alone, and some even chose to report in confidence to the committee, keeping their remarks private.
Coalition building is harder because of an environment of a lack of trust. Some DPOs are co-opted by government, while others remain more independent. Others are afraid to join protest or work with organisations that are seen radical. And as usual there is a competition for limited resources and limited seats at consultation bodies.
That said, while coalition building is harder it is still possible, and there are exceptions that can give us hope. In Budapest in 2018, for example, activists and big disability organisations campaigned successfully for accessibility in a refurbished metro line.
Turning to “silent activism”
The transparency of disability activism also reduces as democracy weakens. A recurring opinion in Bulgaria, Romania, Serbia and Hungary was that disability advocates increasingly work behind closed doors. Some even said they prefer not to tell the public what they do!
DPOs and NGOs seek private, one-on-one meetings with government officials. Some called this ‘silent activism’. Although advocacy always entails some level of diplomacy, lack of transparency means that we may never learn in full how disability groups and governments reached a consensus, what was said and what was agreed about a policy.
Silent forms of advocacy may in turn lock disabled people out of the politics they should follow. I hear young disabled activists in Hungary saying “those big DPOs don’t do anything for us”. I get their frustration but often it is because the organisations do not make noise about it.
“It’s suffocating what we experience”
Many of us follow national or international news today with a mix of fear and disbelief. We see what happens with democratic principles around us and we react with fear. I think this reaction is also common in disability movements.
Government campaigns against civil society use the media, accusations about corruption or being a “foreign agent”. Orbán and others in his media refer to sweeping away “bed bugs”, whether they be judges, media or NGOs.
Such campaigns can target disability movement organisations or not. But do not be fooled: even when governments “only” target LGBT+ or feminist or environmentalist organisations, disability advocates are watching and may feel intimidation.
At the time of one interview, the Hungarian government was launching yet another attack – through their media and think tanks – against LGBT+ people. Our interviewee told us that “it’s suffocating what we experience”, and I think her statement is partly a reference to that context.
In a different interview with the founder of a successful social service, she told me she has avoided the media for a decade. Her organisation is located on a beautiful plot of land in a rural area and she is afraid of a “land grab”. For example, a state-backed Church might try to take over the service and push her out. It’s a pattern she sees occurring to others as churches or other faith-groups with government backing take over running of social services.
“A cunning fear is governing us”
Fear is a tricky thing, it can govern our acts even when we do not acknowledge its presence. It reminds me of a line of Hungarian poetry that comes up in social media comments: “fortélyos félelem igazgat”, a cunning fear is governing us.
This comes from Attila József, a socialist and unparalleled talent. He was treated for depression and schizophrenia and today we might call him a person with a psychosocial disability. He lived and died of suicide amid the shadow of rising fascism in the 1930s. In Hazám, My Homeland, he wrote in 1937:
“Retteg a szegénytől a gazdag
s a gazdagtól fél a szegény.
Fortélyos félelem igazgat
minket s nem csalóka remény.”
Translated to English:
“The rich are frightened by the poor
And the poor fear the rich.
A cunning fear is governing us
not some deceiving hope.”
Rights-based versus paternalist approaches
It is important to note that freedom to speak, organise and campaign are only one part of disability policy. Other areas, like accessibility, are often much less ideological.
Indeed some populist or illiberal governments still make policies to support disabled people. Orbán’s governments did make some progress in accessibility and in the employment of disabled people.
It is perhaps a way to demonstrate their care for vulnerable citizens. Progress is important to acknowledge but we need to be careful of how disability is put back into a paternalistic box where it was before human rights approaches.
And I have no doubt that democracy and disability rights are deeply interrelated. Where democracy is damaged by political forces, disability rights will be damaged, too.
Approaches pursued by illiberal governments will likely avoid a rights-based approach where accountability, transparency and participation in policy-making can be pursued by disability movements.
But even knowing this pattern it can be hard to diagnose in practice. Rights-based language is extremely vulnerable to misinterpretation and manipulation. As we saw with the Potemkin committees, claiming compliance with human rights go hand-in-hand with ignoring or violating them.
Joining forces with other movements
In the end, I wasn’t exactly forced out of my job at the government agency. But after I was asked to resign I felt that my personal integrity was more important, and so accepted the suggestion that I quit. And here I am today, researching the very same topic: how defenders of disability rights are sidelined, silenced, or intimidated.
I do not know how democratic erosion can be countered by the disability movement. Indeed, some disability organisations may end up joining illiberal government forces, or work together with them. And the researcher in me thinks we need to collect more data to better understand what happens and how.
But I do know that disability movements have agency in how they respond to these trends. I strongly believe they need support to avoid leaders becoming co-opted, corrupted or intimidated by authorities.
We need to join forces with other movements that protect democracy. We have a lot to lose.
Üdvözlettel, Yours,
Gabor
Outro
See more about disability and democracy in decline on the Debrief:
- A Chainsaw to Disability Rights, on far-right cuts to disability benefits in Argentina.
- What type of country we become, on disabled people caught between Georgia’s Soviet legacy and European future.
Read more about Gabor’s research:
- See papers summarising findings in Hungary, Bulgaria, Romania, or in the Central and Eastern European region.
- Find more of Gabor’s work on Google Scholar or follow him on Linkedin.
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Acknowledgements
Thanks to Kinanty Andini for her beautiful illustration.
Thank you to Peter Torres Fremlin who gently encouraged and coached me throughout writing this piece.
Thank you to all readers and supporters of Debrief – you make a difference by allowing this important site to exist and feature voices from many parts of this world and our movement.
I thank disability advocates, friends and comrades in Hungary and in Eastern Europe who have helped me during the study.