Coming together as we fall apart

Dear Debriefers,

The third Global Disability Summit (GDS) was an extraordinary meeting, co-hosted by the International Disability Alliance (IDA), together with the governments of Germany and Jordan.

It brought together over 4,700 participants from 160 countries in Berlin. The Chancellor of Germany and King of Jordan were there, as were policy makers, professionals, activists from around the world.

The summit was a stocktake of worldwide progress made on disability rights in the past twenty years. And it was full of promises, meant to be the next step in taking that progress forward.

But the event also demonstrated how governments focus selectively on only some areas of disability rights, and how marginalized groups get left off the agenda.

We came together in an intensely international meeting, but at a time when the world order of the past decades is being overthrown by the country that did so much to make it. The fabric of what brought us together is being torn apart.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist, from Indonesia.

The Debrief can take an independent view thanks to support from readers. Thanks to Brendan, El, Genevieve and Rosemary for new contributions.

A nervous energy

I enter the Summit bubble on Monday, the day before it starts. Outside a shopping mall in central Berlin I bump into Simon, a fellow-Brit. We roll onto coffee with others just-arrived, all camaraderie and nervous energy.

Already with hours of conversation spinning in my head, I can't get to sleep on Monday night. I wonder how my unrested body will deal with the long days. I don't know how I'll deal with so many people, so much stimulus, so many languages. I wonder who will be there.

Anyone I've met from the 14 years I've worked in international disability rights and development might be here, from chance acquaintances to longtime colleagues. Among these are dear friends. Although, given my critiques of the IDA coalition and calls for leadership renewal, I don't know if everyone will be pleased to see me.

A couple of weeks before travelling, the single largest funder of the Debrief told me they will not be renewing support. So I, like many others, arrive in Berlin dispirited by the past few months, in need of money, and looking to recover our dreams.

Wheeling and dealing

Tuesday is the Civil Society Forum, a smaller event ahead of the Summit proper. I roll in and my worries are quickly forgotten. I see Dan, and Anne, I meet Ursula, old friends, new friends, big hugs and, passing each other, urgent hellos.

We check-in with each other, good to meet you in person, was the travel ok, how hard did you get hit by the aid cuts, how many years has it been, here's someone you should meet, is your job or your funding on the line?

My body and mind cope, thrive, even. I can switch between my languages and only once do I effusively greet the wrong person, mistaking them for someone else. This is how I spend the three days, no panels, ten to twelve hours of non-stop talking, scheming, listening.

It's banter, it's beautiful, but it's also business. If I meet someone reading the Debrief and they're from a big organisation which doesn't contribute financially, I suggest they do. I try, not always successfully, to be graceful.

Martin, a comrade from Uruguay who I know from years ago, sees me wheeling and dealing through the corridors. He observes: “You're becoming less a researcher, and more a politician”.

Never seen in one spot

Everyone I've heard from relished this unique opportunity to meet with others. In the words of Rejaul Karim Siddiquee, an advocate from Bangladesh:

“I've never seen in one spot such a huge number of disability rights activists from East-West-South-North of the world!”

And perhaps there never have been so many of us together in one place? This summit, at 4,700 participants from 160 countries, was nearly four times the 1,200 who attended the first GDS in London in 2018.

Clearly, there was a massive organisation and investment needed to make this happen. As hosts, the German government budgeted a whopping €27.9 million for Summit preparations and accompanying initiatives.

The event organised an extensive range of accessibility provisions in the venue and to make panels accessible. Anticipating access from the arrival at the airport, the assistance company was trained and there was also a registration desk.

“The noise was overwhelming”

But the summit wasn't accessible for everyone. In the venue, we all felt the noise, even, I am told, in the “quiet” rooms. The size of the venue meant a lot of walking and lunch queues got pretty long.

These issues added up for people with sensory issues, and a lack of access was particularly felt by neurodiverse participants. Carolina Diaz, Executive Director of the Peruvian Neurodivergent Coalition, told me that from the moment she arrived “the noise was overwhelming”:

“Each day, by the end of the event, I felt dysregulated and in a lot of physical pain from the effort it took to remain there for so many hours.”

Diaz tells me it would have helped her to have sunglasses or ear-defenders, a visual schedule, quiet rooms with proper acoustics, and communication-preference badges.

Indeed, taking a holistic view shows more challenges. The German government did tell its embassies about the summit, but even then getting a visa isn't easy for many outside of rich countries. Security was sometimes heavy-handed inside and outside the venue.

Diaz, like others, commented on problems at the airport. And Luciana Viegas, Director of Black Disabled Lives Matter in Brazil told me about the hostility of the city:

“For those of us who are racialized, the experience in Berlin was marked by episodes of racism and a constant feeling of not belonging.”

Fact and fiction

Wednesday was the most intense day, with the opening of the summit proper. By afternoon, I found my body and mind reacting strangely.

A wave of heat rose through my body and, in the middle of conversation, I had a vivid flashback. I couldn't tell whether it was a memory or a dream. This happened several times, into the evening.

In my mind, the lines of fact and fiction were becoming blurred in hallucination. Perhaps that's part of the point of an event like this? It's a ritual meant to break boundaries between what is and what could be.

The part of the ritual I attend is the opening, a chance to glimpse Heads of State in person. They always appear a bit smaller in real life.

Chancellor of Germany, Olaf Scholz spoke of attacks on diversity and inclusion. King Abdullah II or Jordan mentioned the “situation in Gaza” which gets a scattered response from the crowd, “Gaza, Gaza, Gaza”. Both leaders speak fluently on disability inclusion – as if they meant it.

Making promises

This is the way the Global Disability Summits have been designed, as a way for leaders and organisations to make promises. The most significant one at this Summit is the Amman-Berlin declaration, which aims to make all international development cooperation inclusive of disabled people.

The declaration aims to make all development cooperation inclusive of disabled people and ensure that at least 15% of them have disability inclusion as an objective at the country level. It has already been endorsed by 74 governments.

Among colleagues I spoke to, reaction to this target of “15% for the 15%” was mixed. Some saw the 15% as low and sending the wrong message to the largest donors, by definition those already meeting the target.

Others saw it as good to have a concrete target that could be used. Not only because it would raise the investment for most donors but also that it creates opportunities for advocacy in each recipient country to meet 15% in that context.

Alongside the declaration, the Summit gathered over 800 commitments by governments and organisations to make a better world for disabled people. A dizzying range of initiatives were launched in business, education, health and other areas.

These commitments are meant to be milestones along the path of promoting disability rights internationally. But depending how you look at it, it's either a path of progress, or of broken promises.

Remarkable progress and persistent challenges

Research produced for the summit throws light on the ways the aspirations of disability inclusion have – and haven't – been achieved.

The Global Disability Inclusion Report (GDI Report) was produced wide collaboration by IDA, UN agencies and civil society organisations. It is well worth reading, a magisterial overview of available evidence on disability inclusion around the world, and especially useful in exploration of financing.

The report shows “both remarkable progress and persistent challenges” in achieving a truly inclusive world for people with disabilities. The UN Convention on the Rights of Persons with Disabilities (CRPD) has been ratified by nearly every country on earth – a notable exception being the United States. The Convention has been a “cornerstone of progress”, but the progress is not uniform:

“While many countries have adopted or amended stand-alone disability laws, alignment with the CRPD remains uneven. There is selective focus on certain rights (e.g., accessibility, health, employment) with less attention to others (e.g., legal capacity). Further, provisions for accountability and enforcement are often insufficient, and wide-scale harmonization of all relevant legislation with the CRPD is lacking.”

And, indeed, for anyone wanting to see governments' selective focus, inconsistency in application and limited accountability on disability rights, they were clearly demonstrated in this summit.

Leadership abroad, destroying lives at home

International efforts on disability are often in the context of different practices at home. To some extent those of us working internationally have avoided facing this directly, instead taking progress where we can get it.

Some of this tension was present in Germany, which practices wide-ranging segregation of disabled people. At primary school level, Germany segregates disabled children at twice the average of European countries. And at the same time, it gave €5 million to support inclusive education in Jordan.

And if you ever need a country to exemplify this, look to us in the UK, where the sun never sets on our double standards. Domestically we go backwards on disability while internationally we have (until a few years ago) been among the leaders shaping the agenda.

But it's testing our patience. Many of us Brits in Berlin were offended to see that among the Summit's “key speakers” was Stephen Timms, the minister responsible for tightening the screws on us at home. Steven Allen put into words what we were all feeling when he stood up and heckled the minister:

“Mr Timms, don't come to GDS and tell us about UK leadership when you were in Parliament a couple of days ago destroying the lives of people with disabilities in the UK!”

Allen tells me he said this in a personal capacity and explains that he couldn't help himself. But as Executive Director of Validity Foundation he has parallel concerns: that the Summit saw limited input of civil society and that it's “still governments setting the agenda”.

#TakeBackTheGDS

Inside and outside of the summit, there were different groups pushing back on government agendas.

The most significant was a protest outside the Summit on the opening day, against changes to personal assistance provisions for disabled people in Berlin. It was organised by Ver.di, a trade union, together with the employer's association of personal assistance workers. They called for “refinancing of personal assistance in the employer model”, i.e. where people with disabilities directly employ the assistants themselves.

Inside the summit, frustrations with the selective focus of the summit and groups not given space on the agenda led to some brief manifestations. A small group gathered with a microphone and t-shirts reading “#TakeBackTheGDS” and different slogans, one of which read:

“DENIED LEGAL CAPACITY,
DENIED DIGNITY
GDS STAYS SILENT
– Persons with Psychosocial Disabilities”

In a similar vein, the European Network for Independent Living (ENIL) protested continued investment in segregation and “insufficient political will to change the system”.

ENIL appreciated the Summit but they told me the experience was “bittersweet”. They, like Allen, believe its agenda “was driven by governments and service providers”.

“At the margin of most discussions”

Many people also had wider concerns about who held power and who was getting priority.

Cuban activist Mabel Ballesteros López critiqued it as a “first world summit”. Along the same lines, British campaigner Zara Todd noted that the international development framing “felt at times disrespectful and disempowering to my global majority colleagues”.

These tensions were particularly felt by those representing more marginalized groups within the disability movement. Many felt that there wasn't enough space or ability for them to shape proceedings.

These concerns were voiced in terms of women, gender, racial diversity, people with psychosocial or intellectual disabilities, indigenous people or migrants, among other groups. Viegas, of Black Disabled Lives Matter in Brazil, told me they “felt at the margin of most discussions.”

“Questioning what needs to be questioned”

Designing a high-profile conference is challenging and inevitably hard choices need to be made.

Personally, I would chuck out performative panels and put in facilitated networking and exchange instead. Meeting people is the most important thing, and should be more actively supported, especially for those that arrive without connections.

For some reason I'm not invited to organise conferences. To understand this summit from someone with a role in co-hosting it, I spoke with Jose Viera, Executive Director of IDA.

Viera explained to me that all the summit priorities were issues raised by the disability community. There was a “long process of consultation” that made an effort to go beyond just the organisations in the IDA coalition. And the funding support that brought hundreds of leaders of organisations of persons with disabilities to Berlin was based on an open call for applications.

The summit wasn't focused on population groups, but rather “thematically-driven”. And within those themes, “making sure that those most marginalized groups get the opportunity to engage”. Viera also sees the British Minister's presence as an opportunity, “to advocate for more”:

“I truly believe that the most effective advocacy is the result of the mix of those shouting, fighting, holding signs, and at the same time those creating opportunities for dialogue and joint effort.”

As for the access issues, Viera recognises accessibility as “journey”, and that “if anyone felt left out, there is a need for doing it better”.

“If I'm not included in my home”

There is a tension in the design of these Global Disability Summits. They are trying at once to serve both the governments who commit to progress (and fund it), as well as the professionals and activists that make up disability movements. The field of dialogue is not necessarily an even one.

In the Summit's closing session, a wider pattern of tokenism was pointedly raised by Ruth Mkutumula, Executive Director of Disabled Women in Africa. Speaking of those “left out of development”:

“We have been invited to speak, but not to decide. We were applauded, but not listened to.”

A gathering of disability movements would look very different. In Berlin, representatives of marginalized communities were invited to the podium, but it would be a different stage if it was designed with them in mind. This was not a People's Summit.

At this GDS, Women Enabled International handed out hundreds of purple bandanas as a symbol of the need for a feminist and intersectional disability rights movement. (I styled mine as a cravat.) One of the themes of corridor talk was of the need for deliberate creation of “alternate spaces” based around centring underrepresented groups.

The importance of “expanding disability diversity” was brought home to me by Pratima Gurung, who told me it is needed to “open conversations beyond the disability community”. Gurung is the Executive Director of National Indigenous Disabled Women Association Nepal, and said:

“If I'm not included in my home, if I don't feel I'm a member of the disability community, how can I grow? And how I extend my membership in other movements, like those of women, indigenous people, youth or other minorities?”

“As if nothing had changed”

One of the best things about being lost in the summit was not following the news. But as we came out of its bubble we found that Trump had declared “liberation day”, the biggest player unilaterally interrupting the norms of world trade. We were at an intensely international event, but globalization as we knew it is over.

Ahead of the summit, IDA leadership described it as “a critical moment of reflection, renewal, and recommitment.” As they say, the future of disability-led organisations is part of the future of democracy. And in his speech at the summit opening, Nawaf Kabbara, President of IDA, called for:

“Let's be honest with each other: we are gathering at a time of profound challenge. Around the world, we are seeing hard-won rights rolled back. Budgets are shrinking. Anti-inclusion rhetoric is growing louder. And once again, the lives of persons with disabilities are at risk of being deprioritized.”

But were we able to be honest with each other? And the profound uncertainty about our future applies as much to the summit hosts as anyone else. The German Chancellor is a caretaker, having lost his parliament's confidence last year and elections in February. The new coalition may put Germany's development assistance on the chopping block. And the President of IDA is due for an election in the next days.

The summit focussed on international development at a time it is facing existential cuts. One person who has felt the impact of the new world order is Anne Hayes, Executive Director of Inclusive Development Partners. She got her tickets to the summit before the budget for her organisation was suddenly devastated by cuts in aid (see previously).

For Hayes, the summit was “very frustrating, very weird” with people in shock but acting, especially in the panels, “as if nothing had changed”. She wishes the international disability sector would face the urgent questions in front of it: anticipating ripple effects of budget cuts, how to protect already-limited disability budgets and finding a shared approach to communications needed to push back.

Tears in the fabric that brought us together

The fabric of international cooperation on disability rights is tearing. Like it or not, we were in a world order underpinned by the United States with its often two-faced participation in international affairs.

The ways we made progress in the past decades are under threat. Michael Fembek, CEO of the Zero Project, a global clearinghouse of disability innovation, tells me that transnational cooperation is getting harder. And Elizabeth Kamundia, Director of disability rights at Human Rights Watch, put it like this:

“Global solidarity holds up a mirror that challenges the worst violations of disability rights, but this mirror is at risk of cracking.”

El Moudni Abderrahmane, an activist from Morocco, told me about the “anxiety and apprehension” among fellow activists and the “severe challenges” faced by the disability rights movement in Africa. “We are now faced with the necessity of searching for innovative and sustainable alternatives.”

Like Hayes, I am concerned that we are not raising the alarm sufficiently, not taking the steps within our control, not finding our voice to answer. We're not forming quickly enough the new coalitions, approaches and narratives needed, and many of us aren't even acknowledging we need them.

We are in shock, and splitting at the seams. We're not ready for what comes, of course we're not ready. How could we be?

Coming together as we fall apart

My return journey to the UK went as smoothly as my journey out. It was a big deal for me to travel again, and I still feel the energy I got from all the people I met.

In terms of Disability Debrief, I came back with pitches for articles, leads to follow-up with for funding, and buoyed to hear from those reading it. The danger our sector is in reiterates the importance of the Debrief's work in sharing knowledge, connecting our community, and platforming voices that don't get space elsewhere.

As for what comes next, I'm frightened of the challenges we face, but it's hard to bet against the amazing activists that came together in Berlin.

I believe in the potential of disability movements to be part of making a better world. Our diversity, creativity and voices are an important part of finding a new future. But as everything around us changes, we're going to have to find new ways to do things.

I didn't go to the first Global Disability Summit in 2018 – I wasn't such a politician then – but those that did spoke with amazement of coming together after years of disability being on the sidelines of international cooperation.

The second was held virtually in 2022, due to the ongoing pandemic. But this year's was held at a time when many participants are losing organisational funding, or have their jobs on the line. It was a coming together at a moment when our work is at risk of falling apart.

The next GDS will be hosted by Qatar in 2028. I wonder who'll be there.

I hope this isn't goodbye,

Peter

Outro

Further reading. See also my dispatch on arrival at the summit: recovering our dreams. And for more analysis of international disability work see, for example, my piece on unequal partnerships, reporting on the financial crisis at IDA, or Alberto Vásquez Encalada's piece on gatekeeping.

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Acknowledgements

Thanks to Kinanty Andini for illustrating the GDS and its wonders. Photographs are from Halil Sagirkaya/Anadolu and John MacDougall/AFP, both via Getty Images.

There were so many conversations, exchanges and insights that contributed to the piece. Thanks to everyone who I connected with at the Summit and apologies to those who I missed. I appreciate of course everyone I quote in this article, and many offered more time and insights than I could hope to capture.

Thanks to Celestine Fraser editing this piece from conception to last edits, and to Áine Kelly-Costello and Alberto Vásquez Encalada for revisions and advice. Thanks to Anne for help with German.

A massive organisation went into making the summit and hosting us in Berlin. Thanks to everyone from the hosts who made it happen, and all those who staffed and volunteered through the three days. I had a great time.

I was able to travel to Berlin thanks to the assistance of Peter, ever-patient and helpful, and his time was supported by the UK's Access to Work programme.

And of course to the organisations and readers who support the Debrief – support which made possible this first time reporting on the road.