Russia attacked Ukraine 24th of February 2022. Too many people have lost their lives in this war. Millions of people have been compelled to leave their homes, millions have fled abroad.
But to flee – or even to leave their homes – is not an option for more than 260.000 Ukrainians, people with intellectual disablities. Their wellbeing is dependable of their carers – professionals working with them in institutions and care homes or their family carers.
In my own family we have two adult sons with intellectual disablities. Two wonderful personalities, who because of their disabilities have difficulties in understanding. Whose lives, because of that have always had to be well structured to avoid situations with challenging behaviour which also is part of their individual featurers.
Our sons live in a small care facility with own apartments for every resident. They live in a house with eleven other persons with intellectual disablities. There is 24/7 care by an NGO service provider. The houses are built according to national building regulations and there is also a shelter which during non-crisis times serves as a storage.
We live in Finland. We are a neighbouring country to Russia. We are part of Russia’s western border to European Union with common boarder line of 1.300 kilometers.
I don’t even dare to think of what would happen if my own country was as violently attacked as Ukraine is being attacked now.
- if we suddenly were in the middle of bombing and explosions,
- if we could not flee,
- if we would have to give up those secure structures
- if we could not even go to any shelter because it is not accessible,
- if we would have to spend hours, days, weeks, maybe months in fear and horror, with no one to help us, with lack of food, of drinkable water, of hygiene articles, of essential daily medication
And yet, this is not “if” in Ukraine today. This is everyday life of tens of thousands of Ukrainian people with intellectual disablities, locked up in institutions or care homes or living together with their family carers.
They have been forgotten and abandoned. They have been left on their own.
”I am in Kyiv together with my adult daughter. She is autistic and she has a behavioural issues and intellectual disabilities. It is very difficult for us here. And we cannot possibly leave Kyiv. We cannot leave our flat. I also have 82-years old mother. She’s immobile.
We live on the seventh floor in the residential building and we cannot go downstairs to the bomb shelter. Even that, we cannot do. We’re not the only ones in this type of a situation. There are many of us all over Kyiv, all over Ukraine.”
A mother describing their life during the war – http://www.inclusion-europe.eu
Having the Ukrainian human catastrophy in mind, I wonder how the shelter in our sons’ house could ever accommodate all thirteen residents – many of them also autistic features – with their carers for several days, weeks, maybe months.
“War is scary, especially when you have children. And especially children who find it difficult to understand something. My son is 9 years old, and has 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.”
Another mother describing their life during the war – http://www.inclusion-europe.eu
We live in a world where all people are equal. We have United Nations Convention on the Rights of Persons with Disablities (UNCRPD) which recognises equality as a fundamental right to all people. The UNCRPD has been ratified by more than 180 countries in the world.
I urge the governments to include people with disablities in their Crisis Management plans. People with disablities cannot be forgotten, abandoned nor left on their own in crisis-situation. Nor can they solely be left to be taken care by their families in any such situation.
There must be well planned, targetted, coordinated mechanisms to protect and support people with disabilities, including refugees
Professional carers, service providers international help organisations must have plans and procedures also for people with disablities in any unforeseen or unexpected crisis sitution.
Shelters must be planned and built accessible and livable. Evaquation procedures must include people with disabilities and their family carers. Crisis help must include rehabilitation items, wheelchairs, walkers, specialised beds, specialised medication, specialised support.
I serve my first four-year term as President of Inclusion Europe with another term starting this summer. Inclusion Europe is an organisation representing more than 20 million Europeans, people with intellectual disabilities and their families. Inclusion Europe has members in 39 European countries, also one in Ukraine.
To help our Ukrainian member and Ukrainian people with intellectual disablities and their families Inclusion Europe started a special fundraising campaign in March 2022. Our campaign has been quite succesful and we have been able to help by sending money to families in need through our member.
Already at this stage, I wish to thank all you – private persons, associations and organisations, entrepreneurs and companies, fonds and foundations – who have supported our campaign with your generous donations and in many different ways expressed support or given your invaluable help to Ukraine.
I also wish to thank all you who have been able to give direct help to people in Ukraine or help to Ukrainian refugees on their painfully heavy journey away from the war.
Thank you all for your solidarity towards Ukraine!
My thoughts are with our friends Raisa, Yulia, Olena and so many others, with their families and with all people in Ukraine.
We will meet someday again!
JYRKI PINOMAA 