If you are being overlooked in normal times, it is unlikely that anyone will take you into account during a crisis


I was kindly invited by FEANTSA to contribute to their magazine about the impact of the Russian war on Ukraine. This is what I wrote:

The situation of people with disabilities in Ukraine

There are over 2.7 million people with disabilities in Ukraine, of which some 260,000 are people with intellectual disabilities. They often experience severe discrimination and a restriction of their autonomy, frequently facing institutionalisation when their families can no longer provide care for them. Some local governments promote social inclusion, but they are the exception. It is estimated that at least 82,000 children are segregated from society in “care home” institutions, with thousands of adults with disabilities also living in institutions. Before the war, about 41,000 people with disabilities had been declared legally incompetent, stripping them of their basic human rights, including the right to vote, work or marry, as well as the possibility to make autonomous decisions.

In short, the lives of Ukrainian people with intellectual disabilities and their families were very difficult already before Russia launched this phase of its war on Ukraine on 24 February 2022. And the war made everything much, much worse. Most people with disabilities cannot use shelters because they are inaccessible or too crowded. They cannot evacuate as the routes are inaccessible. They lack daily supplies, including food and medicine. Despite these obstacles, many people with disabilities have fled their homes, becoming refugees in Ukraine and outside of it.

Crisis makes existing neglect and discrimination more pronounced, acute, and just many times worse. If you are being overlooked in normal times, it is unlikely that anyone will take you into account during a crisis. We saw that with the Covid pandemic, and we see it again during the war in Ukraine: the lack of accessibility, information, and consideration when designing support is not “only” affecting everyday life, but makes it almost impossible for people with disabilities to survive or receive support they need.

Many disability activists have been dismayed by the lack of preparedness and action from major humanitarian actors. We have seen the refusal to evacuate people with disabilities and no effort to reach out to disability organisations or families to distribute help. Even most of the support to refugees with disabilities has been provided by local disability organisations and NGOs. All of the “disability inclusion” proclamations we so often saw online hardly reflected in action.

Things have improved in recent weeks, but much more could be done. Disability organisations in Ukraine still don’t receive the support they need from the major actors.

What helped us make progress

However, being “last in line for everything” teaches you some things – resilience and solidarity, for example. Although many big actors have disappointed, the disability sector and individuals have shown an impressive effort to help. This includes Inclusion Europe members, self-advocacy groups, organisations supporting people with intellectual disabilities, people with personal connection to people with intellectual disabilities, or simply some kids who just wanted to help. The generosity and speed of contributions to help people with intellectual disabilities and families in Ukraine has been impressive and humbling. By early July the fundraiser for Ukraine collected € 600,000, an amount we did not even discuss as we prepared to function as a “facilitator” for help to those who could not flee the war zone. This money – and all the other ways in which people and organisations are helping – represents solidarity and empathy among those who mostly rely on themselves to get things done.

Clarity, speed, and direct involvement of our friends and colleagues in Ukraine were essential in getting media attention to the issue. It really helps to get your message across when journalists from CNN, Time Magazine, or the New York Times can speak directly to people with disabilities and their families in Ukraine. Collaboration with the European Disability Forum (EDF) and the European Association of Service Providers for Persons with Disabilities (EASPD) was crucial at this stage too, allowing us to pool resources and draw media’s attention to one joint event.

Our members as well as other organisations played an essential part in less visible ways too, most importantly by talking to national governments about what needs to be done. It was again about pooling resources and dividing labour so that everyone could focus on their own strengths instead of having to deal with all of the same obstacles. For example, EDF’s experience in humanitarian and development affairs allowed them to carry these messages to relevant UN and EU bodies, while Inclusion Europe focused on collecting people’s testimonies, letting them speak in their own words and making their stories available for many people to see.

All this was possible thanks to our incredible friends and colleagues in Ukraine. The VGO Coalition, an all-Ukrainian NGO coalition for persons with intellectual disabilities, became an Inclusion Europe member in 2019. They consist of 118 local organisations and represent some 14,000 families of people with intellectual disabilities. We were aware of the situation people with intellectual disabilities face in the country, and we had contacts to build on. Right after Russia launched the invasion, we started working with the VGO Coalition to see what needs to be done. We also hired Ukrainian and Russian speakers for direct contact with local branches of the VGO Coalition.

It is incredible what the women – they are mostly women – in the VGO Coalition and their local branches have done. They were able to distribute the money we collected to individual families while under bombardment, and having to provide 24/7 support for their own family members with disabilities. They gave interviews to global media, and attended numerous webinars about their situation and needs while sitting in a basement with bad internet connection, rockets literally hitting neighbouring houses.

Similarly, another Ukrainian disability organisation arranged the evacuation of hundreds of people with disabilities when the global agencies responsible for this would not. Many disability organisations or NGOs in neighbouring countries stepped up without hesitation to provide support to refugees with disabilities when governments and agencies in EU countries barely acknowledged their existence.

What we need to consider for the future

While Russia continues to kill people in Ukraine, destroy entire cities, and damage houses and infrastructure all over the country, Ukrainians are already looking to rebuild. It will be an enormous task.

In the Kyiv region alone, 4,835 private houses and 161 high-rise buildings were completely destroyed, with 13,292 private houses and 975 high-rise buildings partially damaged. At the moment, 11,319 families need housing. Over 400,000 people lived in Mariupol before the war. Now the city is no more – with tens of thousands likely dead, and hundreds of thousands with no housing. And this is not the only such city in Eastern Ukraine: “90% of the housing stock is damaged; 60% require demolition and rebuilding” in Severodonetsk.

In this humanitarian crisis that is so closely linked to homelessness, there is an acute risk of many people with intellectual disabilities being left without care or being forced to go into “care homes” because they lost relatives and have nowhere to go. There will be huge psychological impact on people who faced unimaginable suffering and trauma. It will impact all aspects of their daily lives, including their capacity to find and keep housing or employment.

These aspects need to be considered by everyone involved in the reconstruction of Ukraine. To avoid further damage to people who suffered too much already, rebuilding and relevant policies must be disability-inclusive, creating a better future for Ukrainian people with intellectual disabilities. This includes providing support and accessible housing to prevent segregation in “care homes” or homelessness.

One of the most important lessons we have learnt time and again is that advocacy cannot start early enough. We cannot count on relevant agencies to act responsibly and take people with intellectual disabilities (or people who are homeless) into account of their own accord. We see daily that is not how they operate.

Originally published in the summer 2022 issue of Homelessness in Europe magazine.