Jyrki Pinomaa was interviewed for a public broadcaster in Slovenia. In this wide-ranging interview, he talks about:
- What EU does for people with disabilities
- Covid impact
- Inclusion Europe work and plans
Read the interview below. And here is the Slovene version.
In the magazine Kivenjureet from 2007, the situation of your family led you to talk and write about the rights of the disabled and then the demonstration occurred on the steps of the Parliament House to accuse the government of cheating. You accompanied that with words: “It is a matter of improving the situation of people with disabilities so that they are equal to others. There have been reports and a reform of the law, but nothing happened.”
This seems to be the situation in many countries around the globe even today. Did this ratio between law changes and practical action changed in the last 10-15 years? Did we manage to go from words to actions?
In the end of 1990’s I had a speech in Finnish Parliament in an event which was organised around disability services for families with children with disabilities. After my speech one member of the Parliament came to me asking “Is it really true that nothing has changed in 20 years?” He was a father of two young women with disabilities and told me that when listening to me he was reminded of his own speeches twenty years earlier and he felt like he had been speaking himself.
If I listen to younger parents with children with intellectual disabilities today, I can go to them and ask the same question.
Of course, a lot has happened during these decades. But if people with disabilities, parents experience that “There have been reports and a reform of the law, but nothing happened,” then I would say that the government has not succeeded. The services are meant to those who use them and they should always fulfil their needs.
What EU does for people with disabilities
In March 2021, the European Commission adopted the Strategy for the rights of persons with disabilities 2021-2030. How effective is the EU in dealing with different issues of people with (intellectual) disabilities? For example, the European Court of Human Rights has recently taken 2 decisions against the right to vote of people who have limited legal capacity, which was condemned by Inclusion Europe.
In March 2021 the European Commission presented a strategy for the rights of people with disabilities. The ten-year strategy sets out new EU initiatives to improve the lives of people with disabilities. These include:
- promoting supported decision-making,
- new guidance for member states to end segregation in institutional care,
- improved accessibility of EU elections.
The strategy follows on significant EU initiatives launched and implemented previously:
- The EU accessibility act improving accessibility of products of services.
- The EU Social Pillar setting out social policy agenda for all member states, including access to good employment, support for people with disabilities.
The EU has also strongly contributed to transition from segregated institutional care to support in the community. EU funds, and promotion of the issue play important part in making this a reality for many people with disabilities. Of course, much more needs to be done as there are still 1,4 million people in the EU living in institutions.
The right to vote is another big issue that must be resolved quickly.
- At this moment, more than half of EU member states deny people their right to vote (.pdf) based on their legal capacity status.
- Put simply, if you are under guardianship, you cannot vote or stand for elections. That is clear violation of the UN CRPD.
- We have seen some good progress in countries like Spain, France, Germany recently.
- But all European countries must remove this unjust rule from their law.
- Much more also needs to be done to facilitate voter participation: providing accessible election information, having accessible election procedures, providing good support for people.
The ruling of the European Court of Human Rights was a very disappointing set-back in our fight to restore voting rights for people with disabilities. The court’s reasoning is completely flawed, and it will not stop the progress disability movement is making on this crucial issue.
A few days ago news came out on Finnish National Broadcaster YLE that people with intellectual disabilities were treated completely without dignity: they were beaten, harassed, intimidated and, above all, carers used illegal restrictive measures and direct crimes. And this is happening in Finland. What can be done in this regard, when people intimidated people with intellectual difficulties exactly where they should be/feel safe?
This was a most horrible documentary. It presented some serious human rights violations.
The provision of housing services for person with disabilities in Finland has gone through a structural change. It has been changed into market-based and municipalities have ended up fulfilling their responsibility mostly through tendering and price competition. The ideology of tendering has its foundation on the fact that the service can be standardized and commercialized. The needs for help and support of a person with intellectual disability are always individual. Individual help and support cannot be standardized or compared.
Closely connected to this issue is the continuous segregation and mistreatment of people with disabilities in Europe.
- There are 1,4 million people in segregated care institutions in the EU.
- The efforts to change this and provide people with support in the community often leave out people with intellectual disabilities, and especially those with complex support needs.
Governments must immediately replace these institutions, and provide support that is based on each individual’s needs, and includes people in the world around them.
Discrimination and pandemic impact
You stated in one of your open letters: “The COVID-19 pandemic has painfully shown that the old paradigm by which persons with disabilities are treated as if they are invisible or in ways that reinforce unequal power dynamics, is still alive.” What were the best examples of this? Do they still pose a problem after 2 years of epidemic?
When the pandemic started, no government was prepared for it and had no plans how to deal with it. In that case they seemed to know of no other way of dealing with the situation than the one that they had been used to in the past. It was like the UNCRPD never would have existed. It was like equality, services based on individual needs, being included never existed.
The Covid-19 sanitary crisis did not in fact bring new issues concerning the situation of people with intellectual disabilities: it intensified, magnified the segregation and discrimination of people with intellectual disabilities. Many human rights of people with intellectual disabilities were violated during this period.
During the pandemic, this became more acute and the consequence more severe:
- Death rate of people with intellectual disabilities due to Covid-19 is estimated 3,6 times that of the general population in England.
- In many countries, people with intellectual disabilities were denied health care.
- They were forced into isolation in their rooms without being able to leave at all – in Poland this lasted for over a year!
There was also lack of clear and easy to understand information about the situaiton, the measures taken. Disability movement had to fight to get vaccination priority even thought it was clear people with disabilities were at greater risk.
In times of epidemics there was a lack of rehabilitation, the lockdowns took away the opportunity for many people with disabilities to receive their treatments: what damage has been done in this sense and how can this be fixed?
Limiting access to support, treatments people need is one of the many grave consequences of the pandemic. It impacts on the lives and health of people with disabilities directly, and also on those around them. In many countries, all support, care, education was left to families. With no support at all.
Disability organisations and NGOs undertook a tremendous amount of work to provide support during the pandemic. They advocated to uphold the rights of persons with intellectual disabilities and their families across Europe. They provided support and care. They stepped in to fill so many gaps in how the governments informed the public about the situation.
Governments turned to them in the time of crisis. They must turn to them also when distributing money in the recovery process. Investment from recovery funds and other EU and national funds must be used so that it improves the quality of life of people with intellectual disabilities and families. Some inspiration for how post-pandemic investment should be used in this way can come from the US.
Now access to information for people with disabilities is more crucial than ever: everchanging measures, medical recommendations etc. How prepared were we in the field of easy-to-understand texts/news to await the arrival of the epidemic? What was done in the last 10 years and what needs to be done in future within the field of easy language?
Easy to read is well established as one way of ensuring people get information in a format they can use. And having the information is critical for being able to take part in the society, to make decisions, to know what is actually happening.
Easy to read information was very important during the pandemic: to explain about what is happening, what measures are in place, what vaccination is and why it is important people with disabilities have early access to it.
There are many organisations all over Europe producing and using easy to read now. And we want to see more of it, especially from public authorities, banks, and other institutions important to people’s lives.
Not only does easy to read make information more accessible. It also creates job opportunities for people with intellectual disabilities.
You wrote that “we all have trouble understanding everything that is going on, but for people with intellectual disabilities it is even more challenging.” You have two sons, Markus and Robin, who both have intellectual disability: what impact did coronavirus had on your relations and on them?
My sons, Markus and Robin, were isolated in their own homes for thirteen weeks without any daily activities, without any of their regular therapies, without any possibilities for us or anybody else to visit them, without any possibilities for them to visit us, without their regular hobbies etc.
They were only able to go for short outings near the house where they live. We started exploring the possibility of keeping in touch with the brothers through the iPad we had earlier acquired for them. The device had been unused for quite some time, so the applications downloaded to it years ago first required updates. We got the iPad up and running and a Skype connection was finally opened. However, the images that opened through it were mostly still images, but the sound still seemed to pass. When discussing with our sons who do not speak, it was paramount that the expressions, gestures, and support signs they used would also be properly used to support the communication. Upgrading the mobile connection to make it more efficient increased the performance of the device as a videophone. Staff had to get used to using the device.
After the difficulties in the beginning, the video connection finally started working properly. During the daily video calls, the constant and unyielding message of the brothers became clear to us: “We want to go home”.
Even though their visits to our home and also our visits to them could finally after thirteen weeks start again, I would say that their message “We want to go home” still remains.
They had been living away from their childhood home with regular weekly visits to us for almost eight years when the pandemic started. They had learned that they had a home of their own and that our home was only for short visits. But when this structure with regular visits to us was without warning taken away from them, it permanently damaged their structure for safety and security. I am sure that we are still able to rebuild it, but it will take time.
Thousands of children with intellectual disabilities do not get any or proper education. In October Inclusion Europe released a position paper on inclusive education, emphasizing that the world needs to take the next step, and leave segregated education in history. What are the main ideas behind this paper and what do you hope for in future in the field of education?
Our movement was created a long time ago, when there was nothing, trying to find solutions for children with intellectual disabilities. Since then, progress was made:
- Every child has the right to education. There are strong laws to protect this right.
- There are inclusive education policies. A wide range of tools and methodologies for children with disabilities exist.
- There are many schools, where children with and without disabilities benefit from learning together.
- There is a wide range of research and studies documenting how school inclusion works.
- There is a collaboration with those in and outside the education system who help students move from one education level to another, and from education to work.
- There are some people with intellectual disabilities working as teachers or researchers.
But this clearly isn’t enough.
- Thousands of children with intellectual disabilities do not get any education at all. They and their families are left on their own.
- Countless children with intellectual disabilities do not learn together with their non-disabled friends and peers.
- This applies especially to students with complex support needs.
Segregated schooling breaks natural relations between children, leads to limited job opportunities for people with intellectual disabilities, and puts an extra burden on students, parents, and society. Inclusive schools exist and are funded as random “good practice” examples; support to extending their know-how to the whole system is lacking. Inclusive education policies and practices are not taken seriously enough to be put in place in mainstream education.
What we want the countries to do in the near future is to leave segregated education to history. To provide every student with proper education.
This means education where all students share the same classroom, education methods are adapted to every student, teachers are equipped with skills, time, tools, and support to deliver proper education to all students.
Jobs and employment
Without education, there are scarce possibilities for obtaining a job as a person with intellectual difficulties. Inclusion Europe states that employment is the way to inclusion, but that lack of knowledge and attitudes can still be a major barrier to the employment of people with intellectual disabilities. What are the possibilities for the employers to make this transition to employment for people with intellectual disabilities easier and what Inclusion Europe thinks could help accelerate these processes?
Before the pandemic, only 50.8% of persons with disabilities were in employment, compared to 74.8% for persons without disabilities. This is another are the EU Disability Rights Strategy tries to address.
For people with intellectual disabilities, the situation is incomparably worse (.pdf).
- For example in Ireland, only 36% of adults with an intellectual disability were engaged in some form of work: 29% in sheltered centres and only 7.1% on the
open labour market.
- In Scotland, only 6% of people with learning disabilities have a job.
- And this situation is even worse in many countries in Europe.
To address this, states must provide people with intellectual disabilities with proper education. In segregated schools, that is where labour market exclusion starts – with no proper qualifications.
Life-long, vocational training must become inclusive too. With digital and language skills as a priority. This education traditionally denied to people with intellectual disabilities, and essential for finding a job.
There is also so much more that needs to be done to improve access to work both from employers (.docx), and from the states. As we hear about lack of workers from nearly all over Europe, it is time for employers to stop overlooking this pool of talent.
Deinstitutionalisation and EU funds
In 2020 the European Expert Group on the Transition from Institutional to Community-based Care (EEG) contacted the European Commission to voice serious concerns about a large-scale institution for 100 residents with mental health issues in the city of Łódź, Poland. It was a clear example of EU funds being invested in an institutional care setting, something which the EU Regulations covering investments from this source outline as being de facto ineligible for funding. In August 2020, EEG Member ENIL, together with the Validity Foundation, filed a formal complaint. Nearly a year on, the planned investment, known as “Wyjątkowy dom”, is still going ahead and there has been no substantive response to justify its continuation. What is to be done in the field of deinstitutionalization and why is the EU still financing institutions like this if it goes against their own EU regulations? What are the best practices in Europe that could set the example for deinstitutionalization?
No new institutions, no EU funding for institutions – that’s the bare minimum. As I already said, there are 1.4 million people in institutions in the EU. They must get support to move out and live included in the community.
Institutionalisation happens in places where people are treated in groups (based on disability, for example), away from others, their lives directed not by own wishes and needs, but by the institution’s rules and protocols.
- Segregated institutional support must be replace with support that helps each and every person to be part of the world around them: be part of a family, have friends, have a job, be good at something. To belong.
- There must be proper support for families too, so they don’t have to “choose” between dedicating all energy to one member, or removing them into an institution. With the right support, families can be just that – families. Not full-time carers, therapists, administrators, organisers.
Universal solutions don’t exist – universal principles do: People seek human connections, stability. That must be the guiding principle of any support system. Independence and inclusion are achieved by respecting each and every person’s needs and providing a spectrum of individualised support (.docx).
People leaving institutions need support establishing relations, learning about outside world and dealing with the consequences of institutionalisation (including support to cope with abuse they experienced in the institution).
Inclusion Europe work and plans
In June 2021 you were re-elected as an Inclusion Europe president for the second and last term. What has been done in the first term and what are your plans for the term 2022-2026?
In recent years, Inclusion Europe focused on the right to vote for people with intellectual disabilities, contributing to progress made on this issue all over Europe. We’ve also done a lot of work to ensure people with intellectual disabilities themselves are directly involved in EU initiatives, speaking at conferences, contributing to relevant policies. We are pleased to see EU institutions providing easy to read information more frequently to make their work accessible. Recent examples are the launch of the EU Disability Rights strategy, or two reports by the European Parliament (on employment, and on petitions).
Always working with our members, we promote the right to live in the community, education, jobs. We always look at opportunities to share what good work is being done all over Europe, and to help our members share it. As with everybody else, the pandemic influence our work too. We petitioned the European Parliament to protect the rights of people with intellectual disabilities and their families.
In the next years, we will intensify this work. Building on what exists and what has been achieved, we work to make inclusion a reality for everyone.
- Inclusion cannot be a “good practice” lottery.
- It is a right, and it must become the norm in our societies.
With our members, other disability organisations, activists, and experts we fight for Europe where people with intellectual disabilities enjoy equal rights, and participate fully in all aspects of life.
- Where they can decide about their lives, including in elections, not being deprived of this basic right by legal capacity laws.
- Where they live and have support in the community, not being segregated and institutionalised.
- Where they go to mainstream schools, have jobs and are respected in their social roles, are not kept apart from others, left without proper education or future.
For Europe where families of people with intellectual disabilities are supported in such a way they can actually be a family, for all their members.
For Europe where the interests and concerns of people with intellectual disabilities and their families are considered. Europe where nobody lives in exclusion or poverty.
Overcoming prejudice and stereotypes
In some local contexts we can see that different organizations for people with disabilities don’t see eye to eye with each other on many things and are concerned more with particular interests than the common goal, e.g. the empowerment of all people with disabilities. What is the recipe to achieve better unity when fighting for the common goals?
Human rights are universal. They belong equally to all people. We are defending the rights and fighting for the rights of people with intellectual disabilities and their families in Europe. We do it together with our members, together with people with intellectual disabilities, together with the families by listening to them and listening to their dreams, wishes, hopes and plans.
Inclusion Europe represents more than 20 million people in Europe. Together we make our voice louder and together we make our voice heard.
Parents of children with intellectual disabilities are often cast aside, often with overpraising or with pity, not taking into account the real issues they are facing. Is there still much to be done in the field of informing people, of challenging the established patterns of thought?
People tend to fear something they do not know. People with intellectual disabilities have unfortunately for too long been put aside, have for too long been put into institutions, have for too long been in segregated schools and segregated work places – away from your eyes, away from your mind. Intellectual disability has for too long been something strange and unknown, something to be afraid of. We all know well the saying to parents pregnant with their first child: It doesn’t matter if it is a boy or a girl, as long as the baby is healthy.”
We know that the most difficult thing to do is to change people’s attitudes. But if you want to change attitudes, if you want to change the world, you have to start somewhere.
I told you earlier that we all share the same ambitions. School is where these ambitions begin to take shape.
- It is where children learn to know what we think is important.
- It is where children learn to do what prepares them for life and work.
- It is where children learn to play and to be with others.
We need schools where all students are together. Because they learn to work and to be with one another.
Through inclusive schools we also manage to change attitudes of future adults. Inclusive education is a good start because – as the Czech philosopher, pedagogue and theologian John Amos Comenius (1592 – 1670) put it: “School is a manufactory of humanity.”
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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