On the War in Ukraine
Hey Debriefers,
In the desperate circumstances that Ukrainians find themselves in, disabled people are hiding in their bathtubs because they cannot get to the shelters. Institutions of disabled people are being bombed and families are struggling to survive and unable to leave. In the words of one leader in the Ukrainian disability movement, we’re “easier to kill”.
In efforts often led by disabled people themselves, volunteers and civil society are providing immediate relief, supporting people to somehow leave the country, and bringing this subject to international attention. Disabled people are fighting back: joining defence forces, preparing Molotov cocktails and “paralympic athletes took up arms”.
This edition is about the crisis in Ukraine, and the situation of persons with disabilities, almost a month into the latest Russian invasion. We borrow from disability-inspired art and poetry to better understand this awful moment and what it means to witness war.
If you'd like a newsletter that doesn't mention the war, see the previous edition, an interview with the wonderful Yazmine Laroche on turning awareness into action.
Contents
Overview:
- Before the War
- Under Fire (and returning it)
- Leaving Home
- Look for the helpers
- Witnessing War
- Crisis for disabled people in Russia, and beyond
- Where you can donate
Going deeper…
- Behind the numbers: discussion of available data on disabled people
- Curated links (over a 100 links)
Closes with acknowledgements.
As the situation develops I will do more updates on the newsletter, but for a key resources with the latest information, visit the European Disability Forum page on Ukraine and the latest from Inclusion Europe.
About the newsletter
I'm Peter Torres Fremlin, and I make Disability Debrief to understand disability in a changing world. Disability Debrief is supported by readers. This edition is produced with support from CBM Global.
I'm honoured to be able to share with you the art of Tan Kuan Aw, a disabled brother in Malaysia. These watercolours imagine wheelchair-users and others at war. See facebook for his latest; he also did the portrait that I use as a newsletter logo.
Before the War
In my February newsletter I gathered resources on the background situation of persons with disabilities in Ukraine. But those didn't quite capture the effect of the pandemic and impending invasion.
I spoke with Milan Šveřepa of Inclusion Europe to understand more:
“Already, before the war started, the situation for people with intellectual disabilities and their families wasn't very good. Many people were directly affected. For some, their relatives died of Covid and they were left without support.”
There's just-published research that confirms these trends in the impact of COVID-19 on persons with disabilities more widely: increased social isolation, deepening poverty, and reductions in support to organisations of persons with disabilities.
“Then, as [Russian] aggression started to intensify, state resources went to defence, which meant less of them available for support services. They were struggling for finances, and there were already places, like day-care centres, that were forced to close.” — Milan Šveřepa (17 Mar, in conversation)
While it was hard for many to imagine that war could take place, Fight For Right, one of the organisations of persons with disabilities moving heaven and earth in these weeks, report starting the process of finding support, coordinating, and appealing to authorities a month before the invasion.
Under Fire (and returning it)
Russian forces are reported to have bombed a care home for persons with disabilities in Kharkiv, a school for the deaf, and an institution in Kyiv. Fortunately no injuries were reported from these attacks. In worse news, Alexander Kononov, a volunteer helping Ukrainian soldiers, was shot dead in his home.
Outside of these direct attacks, persons with disabilities are sheltering in the way that they can, and they and their families are responding as they can to the new circumstances.
“I move with the aid of a stroller. My mother lives with me, 78 years old and has suffered a stroke. We stayed at home. We run to our 'shelter' to the toilet, taped door and towels, with a bath of water in case it turns off, with pillows on the floor.
I never thought [I will store] bread and drinking water, chocolate, [in the] washing machine. Near the washing machine there is a backpack with medicines, clothes. My mom and I went to our shelter nine times today. When there is no bombing, I call persons with disabilities, I ask whether all is well, what help is needed.” — report from the city of Zhytomyr (4 Mar, EDF)
As well as the challenge of physical accessibility to the shelters, all are facing the challenges of reacting to extreme circumstances. Some persons with psychosocial or intellectual disabilities are unable to understand the new situation or are particularly affected by the changing routines.
Outside of basic safety, survival is more challenging for persons with disabilities and their families. Medications are unavailable, getting food might require someone to stand in line for a long time, some pensions are not being paid. As well as trying to look after themselves, disabled people are defending their country:
“Everyone is trying to help as best they can: by cooking meals, working as dispatchers, delivering medicines, helping in hospitals, offering shelter to displaced people within the country, joining territorial civilian defence forces, or making Molotov cocktails.” (2 Mar, National Assembly of People with Disabilities)
Pics or it didn't happen? Check this picture of women, seated in wheelchairs, colourful blankets wrapped around their legs, preparing Molotov cocktails.
The news from the besieged town of Mariupul is awful. I did not see information on the situation of disabled people in that devastation, beyond the news of newly-acquired injuries.
Leaving home
It's estimated that over 10 million people have left their homes since the 24th February, with over three million leaving Ukraine. Some estimates see persons with disabilities as 10% of the population leaving Ukraine, but in Moldova Help Age sees the rate of disabled people among those arriving as disproportionately low given the population.
Leaving is, at best, a harrowing journey. The considerable challenges of the journey have delayed or discouraged many from attempting it. Both during the journey and after getting out of Ukraine, people may need supports, accessible transportation, or face challenges enduring the conditions.
One parent, stuck near the Polish border for several days, described the effects the journey was having on her daughter:
“Vika has been without rehabilitation for a very long time, her condition is deteriorating,” Chuiska said. “She has started falling while walking and her legs are not developing well, she has pain in her legs now.” (11 Mar, CNN)
You will have heard the challenges that people of colour face leaving Ukraine. Persons with disabilities have also faced difficulties at the border, in particular men with disabilities of military age. They are officially exempt from service, but “border guards don't care and try to force them to join the military.”
Look for the helpers
Volunteers, civil-society organisations and existing and ad-hoc networks are being leveraged to support persons with disabilities still in Ukraine, those leaving, and people after arrival.
Fight for Right, an organisation of persons with disabilities has been particularly prominent in this, and successful also, with allies, in bringing their stories and gaps in response to the attention of international media and organisations. There are similar stories of volunteer support for blind people leaving the country, the work deaf associations are doing to make communications accessible, or the solidarity mobilised to support persons with intellectual disabilities and their families.
You will notice that this list does not include the names of established humanitarian organisations. They have received scathing criticism for inaction and discrimination from the people who are working so hard to respond. Anna Landre, who is supporting Fight For Right, on The Disabled Ukrainians Doing What the UN Can’t (or Won’t?):
“As we made these connections, reaching the highest heights of the “who’s who” of the humanitarian field, we were turned down every time. The typical line was that the organisation lacked the ability to evacuate ‘personnel with those needs’ – in other words, people with disabilities. […]
How fascinating (read: infuriating), given that every single one claims to serve the disability community in their promotional materials and appeals for funding.”
She adds that “another notable pattern is that my team is almost exclusively disabled women, but that’s another blog post.”
Witnessing War
It is hard to avoid saying that we have exacerbated “vulnerabilities” in a crisis, because many of us do; it's hard to avoid glorifying individual and communal “resilience”, because it has been so impressive. But I don't feel either of those tell the whole story.
Ilya Kaminsky is a deaf Ukranian-American poet and one of the vital voices describing this war and its long precedents (and a must-follow on Twitter). I read his fantastic poetry collection Deaf Republic earlier this year: a portrayal of war where deafness is an “insurgency”, a way to resist the occupying soldiers, pay tribute to a child they killed, and find new ways of communicating.
I understand more clearly now, in the context of the Russian invasion's attempt to erase cultural and linguistic autonomy, why resistance to spoken language is so powerful and important. In a beautiful conversation last week, Kaminsky gave a further hint of where the idea might have come from:
“I did not have hearing aids until I was 16: As a deaf child I experienced my country as a nation without sound. I heard the USSR fall apart with my eyes. […]
But what if the whole country was deaf like me? So that whenever a policeman’s commands were uttered no one could hear? I liked to imagine that. Silence, that last neighborhood, untouched, as ever, by the wisdom of the government.”
I wonder whether similar analogies can be drawn with other experiences of disability in war, and how we witness it. I asked Tan Kuan Aw, whose art illustrates this edition, if he could share the motivations behind this series. He replied: "Too emotional to write my feelings. I can only do that in my art.”
Sarah Phillips, who has researched with disabled people for many years in Ukraine, introduces us to the extraordinary character of Dmitrii. She writes about the many times in his life that he has been near death, and his long-lasting refusal to die. Facing the start of the war stuck in a Kyiv hotel:
“Dmitrii keeps his good humour. He sends me jokes and memes on Telegram. He claims he’s glad he got stranded with the other hotel guests, who rely on his cool head and jokes to get through each day. He won’t answer my questions about his supplies of food and medicines. Dmitrii has survived everything else: Can he survive a war? I hope he will keep up his streak and refuse to die.”
Kaminsky's Deaf Republic opens with “We lived happily during the war” a poem urgently questioning who we feel solidarity for and how. It is a question urgently raised by this crisis and the media coverage of it. It is a question familiar to us in the disability community, and that we starkly faced during this pandemic and its effects on us.
The historian Timothy Snyder describes how Ukrainian resistance can transform the world outside Ukraine: “Every day they act is one when we can reflect, and hope. People do have values. The world is not empty. People do find courage.” Their resistance gives us the intellectual and moral possibility to imagine a different world.
Wars are often watershed moments for the social position of disabled people. We see that in some of new research out on disability through the twentieth century in Russia and Eastern Europe: that touches on the economic and social significance of prosthetic limbs and the political activism of war veterans with disabilities. I wonder what world we can imagine from the extraordinary efforts of Ukrainians with disabilities, and their allies around the world.
Crisis in Russia and Beyond
The economic and social effects of the unprecedented scale of sanctions and boycotts on Russia are potentially devastating for persons with disabilities. I asked how things are to a colleague in Moscow who's part of the disability movement.
“Lots of global businesses have been working in Russia for many years and hiring persons with disabilities. Now, the hiring process is stopped. The good news is that people were not fired, so far. [Companies] are in a waiting mode.
Everyone is in the uncertainty in these days. Frankly, I was expecting that all persons with disabilities will be fired because of the situation. So, companies pay some minimal wage to their staff including staff with disabilities.
Some [organisations of people with disabilities] get grants from organisations located in other countries. If they are not able to send money over according to the project stages, staff could lose their jobs.
Beside that, people with different disabilities face challenges with getting technical rehabilitation supplies or software. Blind people are nearly mostly vulnerable. Russian disabled people will stay far behind the technologies which could improve their lives.
Fortunately, disability allowances and social benefits are paid. The government declared the increasing of it. Anyway, it is not a solution, for prices are getting higher and higher, and inflation is big.
We all have no idea what is next. It is very strange and sad...”
(15 Mar, anonymous for safety, some edits for clarity)
Outside of Russia and Ukraine, there are of course many other crises to pay attention to. Funding in the humanitarian system is already shifting to Ukraine, so perhaps responses will become (even) weaker than they were. Food prices were already high and the crisis will worsen global hunger, and it's already being felt in North Africa. All these trends will particularly impact persons with disabilities.
See also the Global Protection Cluster March Update which describes these crises, including mention of the situation of persons with disabilities.
Where you can donate
European Disability Forum gives suggestions on where to donate.
Inclusion Europe is working with its partner coalition of organizations in Ukraine to support persons with intellectual disabilities and their families.
Fight for Right fundraising to help Ukrainians with Disabilities.
The European Association of Service Providers for Persons with Disabilities gives advice on how you can help beyond through donations.
Alzheimer's Disease International gives a list of organizations to consider supporting.
Humanity and Inclusion has an Ukraine Emergency Appeal.
The World Federation of the Deaf supports deaf people in Ukraine through the work of their member organisation, The Ukrainian Society of the Deaf.
Social scientists working on disability have a list of initiatives and groups that they verify.
The “global blind community” will hold an online concert for blind Ukranian refugees (16th April, 2pm Eastern).
For what it's worth, I just made a donation to Inclusion Europe because I was impressed when I spoke to Milan and he described how support through their partner network could provide some assistance to people in Ukraine. Further, I donated to a campaign to support Ukraine's Media because media sustainability is challenging at the best of times let alone operating in a conflict.
Going Deeper
- Behind the numbers
Curated links:
- Resources
- Background Reading
- Attacks on disabled people and facilities
- Situation in Ukraine
- Leaving Ukraine
- Response
- Opinion and Reactions
- Appeals and Statements
- Sport and Paralympics
Then acknowledgements and closing.
Disclaimer: I do often put a disclaimer that just because you are seeing a link on a newsletter does not mean it is 100% accurate, and that you need to use your own judgement. This is especially true when the information space is part of the conflict. Here's practical advice from Full Fact to help you identify bad information.
Behind the Numbers
If you're doing data, see the translation into Ukrainian of the Washington Group questions. They don't have Polish or so many other neighbour-country languages yet.
“2.7 million Ukrainians are persons with disabilities”
Short Story: that's the official number. It's probably an underestimate, as not everyone would be registered.
Long story: 2.7 is the number of Ukrainians classified as disabled. It's hard to get an original source on this as I couldn't find it on the government stats agency but there is a detailed view on those statistics in this 2021 article on inclusive education (link to pdf).
As you will see, the classification is split into groups I, II, III and children. Following that article, in 2020, the government had 222,300 people in group I, 900,800 in group II, 1.4 million in group III, and 163,900 children with disabilities.
What do those classifications mean? These classifications derive from the Soviet era practices. What they mean and how they’re used is absolutely wild; the system dates from 1932 and is closely related to the (perceived) ability to work. Keeping in mind that we would absolutely disagree with these definitions:
“Group I includes those considered unable to work and deemed to require constant nursing care; group II includes those not perceived to require constant nursing care who have lost some capability to work but may work in special conditions; people in group III are considered the partially disabled who have lost some work capability but may engage in part-time or casual work” (Sarah Phillips, 2009)
That said, my own work in post-Soviet countries suggests that the definitions are quite shifting depending who you speak to. And yes, I absolutely I did meet “group I” disabled people who were more than capable of working, and doing so.
So how many disabled people are there actually? Well we don't know. We would normally estimate 15%, which would give over 6 million. There are many reasons that this is higher than the “official” number: these certification systems are often very clumsy, hard to get, and will exclude people that do have disabilities, as well as probably including a fair number of those who don't.
“82,000 children are in institutions”
Short story: that's the guess. Fair chance it's more. We don't know how many adults there are/were in institutions.
Long Story: Estimates from a report on the Exploitation and abuse of Children in Ukrainian Orphanages gives a lower estimate of 82,000 and a higher estimate of 200,000 (Disability Rights International, 2015). Currently they share the range of 100,000 to 200,000. I couldn't find where the original estimate of 82,000 came from.
I guess people started showing the lower number to be conservative, and that's what stuck? Needless to say it's a huge guess and partially there has been, at least on paper, a process of deinstitutionalization since then.
What about adults in institutions? I haven't seen estimates of this.
Curated Links
War in Ukraine
Resources
On the humanitarian response overall:
- UNHCR portal on the Ukraine Refugee Situation which gives an indication of overall numbers in destination countries as well as the flash reports on the situation of displacement and refugees. (UNHCR)
- The UN Office for the Coordination of Humanitarian Affairs Ukraine resources. As of 16th March, estimates are almost 6.5 million internally disabled people. (OCHA)
European Disability Forum page on Ukraine War providing updates, testimonies of disabled people, resources, and further links. See also:
- Information for Ukrainians arriving in the European Union
- Resources for inclusive emergency response.
Inclusion Europe has important and regular updates.
The National Assembly of People with Disabilities has frequent updates on the evolving situation, in Ukrainian.
The Partnership for Inclusive Disaster Strategies Ukraine Crisis. Practical information and resources.
Advice and support for those affected by the Ukrainian crisis Overview of and resources in relation to older people, people with dementia and their families. (Alzheimer's Disease International)
HelpAge page on Supporting older people in the Ukraine crisis
World Federation of the Deaf Updates on Ukraine. "Several deaf associations throughout the country dispersed these announcements. Interpreters have also been at work to ensure that government announcements are accessible, and a 24/7 video relay network still works to guarantee deaf people their right to make phone calls at all hours as necessary." (17 Mar)
Global Alliance for Disaster Resource Acceleration (GADRA) updates on support efforts to disability-led organizations in Ukraine (WID)
Autism Europe Support for autistic people in Ukraine includes link for a facebook group supporting the autistic community in Ukraine.
Psychoeducational resources on PTSD and trauma translated into Ukranian, Polish and Russian. (10 Mar, Psychology Tools)
A Ukrainian translation of the WG Short Set on Functioning is now available. (Mar, The Washington Group on Disability Statistics)
Background Reading
Recent Historiographical Trends in Scholarship on Disability and Socialism in Eastern Europe. A good overview of how research shows the place of disabled people and their relationships with socialism:
"A common thread that runs through the studies discussed in this paper is the emphasis on productivism in disability policies and expert discourses, a logic aimed at integrating the disabled into the socialist society by increasing their work capacity. The authors show that conceptions about disability were embedded in overarching biopolitical considerations revolving around labour productivity. While the socialist work ethos led to a segregation of the ‘productive’ from the ‘unproductive’, it would be misleading to conceive disability during state socialism exclusively as a history of discrimination and marginalisation. Disability histories ‘from below’ point to the fact that disabled people in various historical contexts played an active role in reproducing and recreating discourses that defined disability [...]"
"In state socialist countries, disabled persons and associations frequently articulated emancipatory claims and sought to prove their productivity and eagerness to participate in the workforce. However, these egalitarian aspirations had troublesome implications since integration into socialist societies was strictly conditional on their contribution to the labour force. Social security programmes were primarily formed as a reward system for work, not as a way to meet the needs of the disabled. While those recognised as partially disabled were to be integrated through work placement in regular or sheltered workplaces, this system ultimately had the opposite effect and created a segregated system of work." (Feb, Scandinavian Journal of Disability Research)
A working paper on the impact of COVID-19 on People with Disabilities: Perspectives of Organisations of People with Disabilities. Describes inaccessibility of healthcare, increased social isolation, restricted mobility and deepening poverty. While some organizations of persons with disabilities reported new partnerships, many had funding reduced. (Mar, Kiril Sharapov et al)
Advocacy Note on Assisting Displaced and Conflict-Affected Older People (link to pdf, June 2020, Protection Cluster)
In Russia, A new book, The Broken Years: Russia's Disabled War Veterans, 1904–1921, which shows:
"the question of disabled veterans became bound up in broader political and social debates in the early twentieth century and fostered health care and social welfare policy. The experience of these 1.14 million war veterans reconfigured notions of heroism, sacrifice and patriotism while the period of 1915-1919 was marked by extensive political activism by disabled veterans." (Feb, Cambridge University Press)
Attacks on disabled people and facilities
Russia Shells Kharkiv Care Home for Adults, Children With Disabilities 73 were evacuated and no casualties were reported of the 330 residents. (12 Mar, Business Insider)
A school for the deaf hit, no injuries reported, on weekend of 5th/6th March. (7 Mar, World Federation of the Deaf)
Russian forces take over psychiatric hospital in central Ukraine "Russian forces have taken control of a psychiatric hospital in the town of Borodyanka in Ukraine's Kyiv region, with 670 people inside, the regional governor Oleksiy Kuleba told local media." (5 Mar, Reuters)
Russia hit a psychoneurological institution in Pushcha-Vodytsya, Kyiv Patients and staff were evacuated in advance. (13 Mar, Spravdi)
Russian troops shoot dead disabled Ukrainian volunteer "The Governor claimed that Kononov, who voluntarily provided food, water, medicines, etc., to Ukrainian soldiers fighting pro-Moscow militants in Luhansk, was killed whilst he sat in his wheelchair at his home" (14 Mar, Republic World) See more in Hromadske, in Ukrainian. And a tribute from Fight for Right.
Situation in Ukraine
First Days of War: A Report from Bucha, Kyiv Oblast
"Everyone is either running — out of buildings, into buildings — or is standing still in shock. And on the top floor of our five-story apartment building, one man stands alone on his balcony, leaning on the railing, apathetically smoking and watching the fire." (does not mention disability, 2 Mar, LA Review of Books)
Stories from the ground in Ukraine collected testimonies from persons with disabilities.
"I move with the aid of a stroller. My mother lives with me, 78 years old and has suffered a stroke. We stayed at home. We run to our 'shelter' to the toilet, taped door and towels, with a bath of water in case it turns off, with pillows on the floor. I never thought bread and drinking water, chocolate, I will store in the washing machine. Near the washing machine there is a backpack with medicines, clothes. My mom and I went to our shelter nine times today. When there is no bombing, I call persons with disabilities, I ask whether all is well, what help is needed.' - person in Zhytomyr on 4th March (Mar, EDF)
Under Shelling in Kharkiv People with Disabilities Need to Evacuate Safely. (7 Mar, Human Rights Watch)
Millions with disabilities ‘abandoned’ in Ukraine, charities fear “We have had disabled people who have called medical humanitarian-oriented agencies, have called their crisis hotline and said, ‘Hi, I’m a wheelchair user, with pressure sores. I need help’, and have been told: ‘Oh, we don’t help people with disabilities, you should call the Department of Social Protection’. If they manage to reach the borders, the refugee centres and buses are 'not wheelchair accessible'". (8 Mar, Independent)
Professor fears for elderly immobile mother in Mariupol. "Her feeling is, it will just take too much time and effort to evacuate her out of her home and out of the war zone, and her plans are basically to stay put for as long as she can because she feels that really the world belongs to the future, to the women and children and the younger generations." (4 Mar, BBC)
A plea from disabled Ukrainians: ‘We have no chance without help’ (9 Mar, Washington Post)
Press Conference on experiences of persons with disabilities Act Now to Support Ukrainians with Disabilities and their Families. As well as giving context, gave testimonies of people in Ukraine:
“I am in Kyiv in the capital together with my adult daughter who is autistic and has behavioral disorders. Currently we cannot possibly leave the city of Kyiv. I also have my mother who is 82 years old. She cannot move. We cannot go downstairs to the bomb shelter. Please believe me and we are not alone in this situation. There are many of us in this situation, all over the city of Kyiv, all over Ukraine.” -- Yuliaa Klepets
“one of our NGO leaders has a son with autism and cannot leave him for more than one hour. Which means that she cannot queue for the pharmacy, for the supermarket, for the bank machine and therefore cannot get the drugs, the food, the money she needs. She needs help for even these basic amenities. We also know that those with severe disabilities, and those whose parents are older, they do not leave Ukraine. The trip is so difficult and so long.” -- Raisa Kravchenko (10 Mar, EASPD)
For an overall view, see this UNDP warning that 30% of the population are likely to require life-saving humanitarian assistance and 90% of the population could be facing poverty and vulnerability to poverty. Does not mention persons with disabilities. (16 Mar)
The Disasters Emergency Committee (DEC) warns that millions of older people and people with disabilities now at high risk. "Nine out of ten older people need help to get food because they may have mobility issues and many live alone." (10 Mar, Age International) See also the press release from DEC.
Updates on People with intellectual disabilities and families in Ukraine affected by Russian war. (Inclusion Europe) Includes the testimony of a mother with a 9-year-old son with autism:
"With the start of the war, we moved to another area, a city close to the border, but it did not last long, only 5 days.
My son was always nervous, resolving to dissatisfied kicking. The neighbours often complained about the noise. Any walk was accompanied by screaming, crying, the child’s lips trembled and his face lost colour.
When we left the apartment, we had to take out all our belongings, he ran and packed his bags, anxiously inspected whether we had forgotten anything. Eventually we returned home, I felt calmer and so did my son.
But the sirens and the basement became the next problem. Dragging him there was not easy, he did not understand why we were there and what was happening.
Then we decided to live improve it a bit in our basement, brought some things, goodies. Everything seemed to be fine, because the time in the basement lasted up to an hour. But later we had to stay there until 6 o’clock, we can’t get used to it.
We also have a curfew and at 20.00 the light should go out. This has become another problem for the child he can not understand. Because when you turn off the light, you need to sleep, and his biological clock says it’s not time. We are faced with self-aggression, he began to bite his hands and cry, lying on the ground. There was no way of a hug, the child did not want it categorically.
There was little light from the TV and nightlights and then we lit candles. For now, it’s calm.
I believe that everything will end soon, but my son has autism, and some things will become a habit for him. For example, we had dinner in the basement several times, and now he takes his dinner and demands to go downstairs, even if the sirens are not on." (16 March)
Leaving Ukraine
Ukrainian woman says people with disabilities 'left behind' after 'almost impossible' journey across the border. The experience of Tanya Herasymova, project coordinator of Fight For Our Right. "The only people who offered support is volunteers. Without people, such people, it couldn't be possible to evacuate for us." (2 Mar, Irish Mirror)
Chaos, upheaval and exhaustion for Ukraine's disabled children. Evacuation of children with disabilities from one centre. "The bus to the Polish border was a capsule of exhaustion, grief and tender mercies." (8 Mar, BBC)
The Disabled Ukrainians Doing What the UN Can’t (or Won’t?) Behind the scenes on the ad-hoc connections within the disability community and lack of support from humanitarian organizations.
'But as we made these connections, reaching the highest heights of the “who’s who” of the humanitarian field, we were turned down every time. The typical line was that the organization lacked the ability to evacuate “personnel with those needs” – in other words, people with disabilities.
How fascinating (read: infuriating), given that every single one claims to serve the disability community in their promotional materials and appeals for funding. ' [...]
'Notice a pattern here? The disability community, already under-resourced and struggling, is consistently the only one to step in to help.' (9 Mar, FP2P)
Humanitarian efforts aren't doing enough to evacuate Ukrainians with disabilities A deeper look at the barriers disabled people are facing to leave, including being stopped at the border.
"Despite collective condemnation of Russia and support for Ukraine's sovereignty among the international community, the humanitarian response has lacked inclusivity and accessibility for many. From inaccessible evacuation centers to a lack of information in accessible formats such as braille or sign language, the lack of proper resources for people with disabilities has had devastating consequences." (8 Mar, MSNBC)
Escaping the horror in Ukraine is not an option for many disabled children and their families One parent, stuck near the Polish border for several days described their daughter's need to resume physical therapy:
"Vika has been without rehabilitation for a very long time, her condition is deteriorating," Chuiska said. "She is constantly growing and her muscles do not develop at the same pace, so she is starting to lose the progress. She has started falling while walking and her legs are not developing well, she has pain in her legs now." (11 Mar, CNN)
As Millions Flee, Disabled Ukrainians Forced to Fend for Themselves (11 Mar, New Mobility)
Refugees on the Moldova-Ukraine border "We saw a fairly large number of older people arriving, as well as some people with disabilities who were being assisted in their journey. But the number is disproportionately low, compared to the population of Ukraine." (15 Mar, HelpAge)
In Touch podcast on the blind people and organizations supporting people in Poland and children with visual impairments in Lviv. As with so much of the response, these are individual, ad-hoc measures. (with transcript, 15 Mar, BBC)
In-depth conversation with Tanya Herasymova, of Fight for your Right (15 Mar, Natasha Lipman)
Disabled children fleeing Kyiv received by Poles, Hungarians. Evacuation of residents of orphanages for children with disabilities. (3 Mar, KTAR News)
BBC Ouch podcast 'I think of my wheelchair more than myself now' with Tanya from Fight for your Right, and a disabled Russian journalist who left Moscow after her article denouncing the Ukraine war went viral. (no transcript I think, 18 Mar, BBC)
The Global Effort To Evacuate Children With Cancer (15 Mar, Forbes)
In Moldova,
- "I want to go back" testimonies from older people who left Ukraine. (11 Mar, Help Age)
- Rapid Needs Assessment of Older Refugees
"Only 22% of older people interviewed had a disability. This is surprisingly low and may reflect that many of those with a disability have found it harder to flee their homes. Agencies should be prepared in coming weeks for older people arriving who need assistive aids such as hearing aids, wheelchairs, and incontinence pads, which may have been left behind, lost, or broken along the journey. " (link to pdf, 10 Mar, Help Age)
In Poland,
- War refugees with disabilities in Poland - situation, support, needs. Links to this page with a list of resource organizations in Polish. (8 Mar, Inclusion Europe)
- Poland representative stated that among the over million Ukrainians who arrived fleeing the war, 100,000 are with disabilities, mostly children. They are arriving without basic assistive technologies like wheelchairs, canes, etc. Poland is trying to find Ukrainian sign language interpreters, develop accessibility and support. (9 Mar, Alejandro Moledo) Polish rehabilitation centres are offering their services for free.
Response
A rapid review: Can social protection be sustained and support a humanitarian response? "the Ukrainian Government has moved with remarkable speed to adapt systems to ensure the delivery of existing programmes." Includes mention of disability-related benefits. (14 Mar, CIDT)
Persons with disabilities in Ukraine face a ‘crisis within a crisis’ "Civil society calls on the EU, national governments and humanitarian organisations to step up efforts to protect Ukraine’s 2.7 million persons with disabilities who risk abandonment, death or a lack of shelter amid Russia’s invasion." (15 Mar, Euractiv)
Disabled people in Ukraine at risk of being abandoned and forgotten (7 Mar, Eye Witness News)
Global Protection Cluster update on Protection of persons with disabilities in Ukraine. Describes recommendations for an inclusive humanitarian response. (8 Mar)
Resources on the Protection of Persons with Disabilities during Armed Conflict (link to docx, UN Special Rapporteur on the Rights of Persons with Disabilities)
The UN High Commission for Refugees Summary of Regional Refugee Response Plan. Mentions the need to target and adapt services for persons with disabilities. (UNHCR)
Armed conflict and displacement heightens risks of all forms of sexual violence including trafficking in persons. Calls for responses to risks of trafficking in persons to be inclusive and ensure the rights of persons with disabilities. (16 Mar, OHCHR)
Relief Web hub on the Ukraine Humanitarian Crisis. Overall information and key documents from the international humanitarian response.
Update from the National Assembly of People with Disabilities of Ukraine on how they are responding (scroll down for English text, 17 Mar, NAIU)
Fight for Right's Call to Action Prioritize Ukrainians with Disabilities. Relates experiences and calls for inclusion in response. (2 Mar, The Partnership for Inclusive Disaster Strategies) See also practical information for people with disabilities seeking to evacuate.
Webinar discussion from GADRA and Fight for Right Ukrainians with disabilities In-depth discussion on the response. Include insights into the volunteer networks coordinating the response, some of the organizations supporting, and the challenges being faced. (11 Mar) See also the webinar transcript.
In Eastern Ukraine, Survey of more than 1,500 over-60s: Older people on the edge of survival "Older people make up a third of all people in need of assistance in Ukraine, making this conflict the ‘oldest’ humanitarian crisis in the world. One in four people in Ukraine are over 60-years-old and Ukraine has the largest percentage of older people affected by conflict in a single country in the world." (Mar)
Opinion and Reactions
Q&A with Ilya Kaminsky, Ukrainian-American poet a beautiful wide-ranging issues that touches on Deaf Gain and its contribution to the larger world.
"We must remember that even in the most difficult situations, people are still able to retain their humanity. They fall in love, they marry, and they have children. We must honor that too, and not just speak of the darkness of war. We must honor human survival, because if we don’t do this, if we don’t pay attention to every aspect, we dehumanize the suffering." (25 Feb, Daily Princetonian)
In war disabled people cannot be left behind. Quotes a Paralympian saying in 2016, "Ukraine has already won 37 medals in the Paralympics, 12 of them are gold… We have more medals than wheelchair ramps in an average Ukrainian town." (27 Feb, The Once and Future Cripple)
Discrimination against people with disabilities is one example of how Russia operates outside rule of law (Mar, Canada's National Observer: News & Analysis) Sure, I guess, I wonder what it is an example of when other countries do it though.
Sarah Phillips has been researching with disabled people in the Ukraine for around 20 years. Refusal to Die is an essay revisiting the current situation of those she knows.
"Back in his Kyiv hotel, Dmitrii keeps his good humor. He sends me jokes and memes on Telegram. He claims he’s glad he got stranded with the other hotel guests, who rely on his cool head and jokes to get through each day. He won’t answer my questions about his supplies of food and medicines. Dmitrii has survived everything else: Can he survive a war? I hope he will keep up his streak and refuse to die." (11 Mar, Cultural Anthropology)
Appeals and Statements
The United States International Council on Disabilities Calls for the Protection And Safety of Ukranians with Disabilities (link to pdf, 25 Feb)
Appeal from the National Assembly of People with Disabilities of Ukraine appeal for help to "defend peace in our country", which speaks to the active role disabled people and their organizations are playing:
"Today in Ukraine, people with disabilities and disabled people’s organizations are helping our State and are standing shoulder to shoulder with our defenders. Everyone is trying to help as best they can: by cooking meals, working as dispatchers, delivering medicines, helping in hospitals, offering shelter to displaced people within the country, joining territorial civilian defence forces, or making Molotov cocktails. Yesterday we received information that a son, father and husband was killed near Kiev when defending his family, his home. He used a wheelchair but also joined the defence forces. Our world-famous paralympic athletes took up arms. We are united. " (2 Mar, EDF)
European Network on Independent Living War in Ukraine: Leave No One Behind (Mar, ENIL)
Autism Europe Call to ensure the protection of Ukrainian autistic people "autistic people and their families are largely invisible and underserved by humanitarian aid dedicated to supporting the people of Ukraine" (3 Mar, Autism Europe)
CRPD Committee opens first full session since 2019: The situation of persons with disabilities in Ukraine in focus. (Mar, IDA) See also detailed report of the Committee Meeting.
War in Ukraine shows devastating impact of heavy bombing and shelling on civilian population. "Explosive weapons kill and/or cause complex injuries. They are the cause of massive forced displacement. Entire communities suffer extensive psychological trauma, with particularly acute consequences on children." (8 Mar, Humanity and Inclusion)
Ukraine Crisis: CBM Global Statement (9 Mar)
Diakonia International Humanitarian Law Centre calls to Protect persons with disabilities in the Ukraine conflict (10 Mar)
Covid and Disability project Letter from Kiril Sharapov:
"Organisations of persons with disabilities remain one of the last remaining systems of support for people they have been taking care of within the context of the pandemic and now within the context of this catastrophic war. They continue, where and when they can, to provide support to the most vulnerable individuals and their families. Their knowledge and expertise must inform all current and future relief efforts provided by the Government of Ukraine and by the international donors and humanitarian agencies." (3 Mar)
International Disability Alliance: Through this conflict in Ukraine, what happens to persons with disabilities? (Mar, IDA)
G3ict and IAAP Statement: Protection and Safety of Persons with Disabilities in Ukraine (28 Feb)
Down Syndrome International statement on Ukraine conflict (1 Mar)
Global Alliance for Disaster Resource Acceleration (GADRA), Statement on Russian Invasion of Ukraine (1 Mar, WID)
UN Human Rights Experts: Protecting life must be a priority "Many more risk dying as a result of the destruction of essential infrastructure, including health care facilities and institutions for older persons with disabilities." (8 Mar, OHCHR) See also statement on older people and those with disabilities face heightened risks (4 March).
The European Blind Union Protect blind and partially sighted people "Stop War Immediately" (link to pdf, 7 Mar)
European Disability Forum Resolution on Protection and safety of persons with disabilities in the war in Ukraine. Recommendations to the European Union and Member States. (link to pdf, 11 Mar)
An open letter from social scientists of disability call to Stop the War in Ukraine
In France, Communication of the CNCPH on the protection and security of persons with disabilities in Ukraine (in French, 4 Mar)
In the United Kingdom, Older people’s organisations across the UK call on the Prime Minister to take further action to support older people affected by war in Ukraine (10 Mar, Older People's Commissioner for Wales)
Sport and Paralympics
IPC makes decisions regarding RPC and NPC Belarus. Decision for athletes from Russia and Belarus to participate as neutrals. And "The Paralympic Honour bestowed to Vladimir Putin, President of Russia, has been withdrawn." (2 Mar, IPC) Athletes of Ukraine criticised the IPC for not taking a strong enough stance, “choosing bloodshed and profits over principle and stakeholders”. See also video of their appeal, (28 Feb).
Opening ceremony of the Paralympics started with a speech calling for peace (4 Mar, Youtube, Channel 4 Sport)
Special Olympics Calls Off World Winter Games In Russia (Mar, Disability Scoop)
Acknowledgements
It's quite humbling gathering this news together, seeing the news of people who are doing so much to assist Ukrainians inside and outside of the country.
I appreciate Tan Kuan Aw as a friend and an artist and thank him for being so open for me to share his work with y’all. Thanks to Milan Šveřepa from Inclusion Europe for an interview to better understand the situation; and to Mary Keogh of CBM Global for some background. I would not have understood the poetry of Ilya Kaminsky so clearly without conversations with the dear David Taylor. Particular thanks to my colleague in Moscow for our sincere conversation in these times and allowing me to share some of it with readers.
Thanks to support from readers that powers Disability Debrief, including new contributions from Kate, an anonymous but dear friend, and Kishore. Many thanks to CBM Global's support to this edition.
These newsletters are produced by me, Peter Torres Fremlin. Any opinions or mistakes are mine.
I started the newsletter with a quote from Valery Sushkevych, from the National Assembly of Persons with Disabilities. I will close with the same words that he used to close the press conference: I wish you health and peaceful skies above your head.
Peter