People not receiving medical treatment for their conditions, because they are too “difficult”? Children without education because schools cannot communicate with them. Families left to their own devices to deal with everything from feeding to education. Everyone unable to reach relatives and friends and have a normal, human conversation?
Sounds familiar? And yet, this is not a description of life under the coronavirus lockdown.
This is what it has been for millions of people with intellectual disabilities and their family members forever.
What coronavirus and the lockdown highlights is the ongoing segregation and discrimination of people with intellectual disabilities, especially in access to healthcare. This problem is not likely to have a “lockdown exit strategy” any time soon.
What the coronavirus emergency does to the millions of them across Europe is make these features of daily life several orders worse. Adding any realistic prospect of a coronavirus lockdown exit will not bring intellectually disabled people relief, just a symbolic start to a long period of harm and suffering, away from media attention.
It’s one thing juggling work, home-schooling and isolation for you or me. It’s something else for a mother of a child with severe disabilities: as one said: “As a single mother, I am now caring for my severely disabled son alone, 24/7, without any assistance, without rest, with more demand for shopping, cooking, feeding and intensive care”.
When it comes to education, the priority seems to be how to handle the administration of exams, and how to avoid making it too obvious that we parents don’t know half the stuff our children are supposed to learn.
But what about the children who are receiving no education at all?
Considering all the talk about “special education” and the indispensable role of special schools, we are yet to hear from any that would be doing something “special” for children with disabilities during this crisis.
Was it a surprise when the first cases of people being denied medical treatment was because of their disability? It couldn’t have been to anyone who knew anything about the daily lives of people with intellectual disabilities.
At least, a cynic could say, the current emergency exposes large-scale residential “care” institutions for what they are: pressure-cookers of risks and problems, not the “safe spaces” they sell themselves to be.
But at what cost. Large groups of people (in some cases staff included) being completely isolated and locked-down for weeks, months even.
What can possibly be going on in there? What will be the psychological effects on all those inside?
And how many people living in these “care” institutions will die, never receiving proper medical care? It’s happening in nursing homes for old people, and the worrying signs about care institutions for people with disabilities are there too.
We are in an emergency, I hear you say, everyone must dig deep, clench their teeth and try to make it through. That is true – or it would be, if this situation was anything new for people with intellectual disabilities, and if it was likely to go away soon. It is neither.
Even if things go back to normal, pre-pandemic times, it still means people with disabilities being segregated from their communities and from schools; families having to provide most care and support, and to fight for every inch of progress and recognition; it still means people with intellectual disabilities not receiving proper health care.
As unwelcome as it sounds, it would still be better than what we must fear most: the financial repercussions and the culling of services.
We have seen the lethal impact of the 2009 financial crisis – closed services, slashed disability and social benefits, massive unemployment and finally the toll this took on peoples’ wellbeing and lives.
Unless they want to see repeat of these tragedies, national and EU authorities must ensure the billions of post-corona economic injections are targeted first and foremost at people with disabilities and other “vulnerable” groups.
So far, the signs are not encouraging, and the communication is focused on businesses and employment, on using EU cohesion money to fund whatever corona-measures are needed.
Business and employment are important, but it is not everything. Money taken from cohesion funds now will be missed later. The trickle-down economy does not work, as many rightly point out looking overseas.
So why apply it in Europe?
What is needed is disability-related services returning to normal as a matter of priority, among the first to open in the “lockdown exit”.
What is needed is post-Corona financial measures not only reaching out but starting with people intellectual disabilities and their families.
Because how long do you think all these mothers can continue to care for their severely disabled sons and daughters, alone, 24/7, without any assistance, without rest, with more demand for shopping, cooking, feeding and intensive care?
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
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