Share your stories
- The article has been published as the Editorial of the Annual Report of Inclusion Europe 2019
The public opinion about intellectual disabilities never ceases to astonish me. People with little or no experience of intellectual disability tend to see it as a pitiful condition, as something that does not seem to concern them much. “Away from my eyes, away from my mind” is thinking which also explains why people with intellectual disabilities have been institutionalized. The majority of people do not wish to be constantly reminded of the kind of minority which does not match with the idea of everything being fine.
Every parent expecting a child has probably heard, once or several times “No matter if it is a boy or a girl, as long as everything is fine!” I remember very well having heard it and how I grew to oppose it. This saying hit me especially after Markus was born, our second child and our first son with multiple and intellectual disabilities. “As long as everything is fine!” was the title of my first ever article on disabilities. I wrote it when Markus was three months old, 33 years ago. The article was published in a monthly Finnish magazine “Kaks plus” (Two plus), a magazine addressed to young families with babies.
It was the beginning of my public life. By writing the article I wanted to shout out to the world around me that everything actually can be fine even if the child has a disability, that there are more important things than just being fine. A child was born, and that was important. This child could not be sent back anywhere. Children like our Markus also have the right to their family, and the families with children of his kind, also had a right to exist.
Since this first article there have been many more articles published and also numerous tv-, radio-, and magazine interviews. There have been lectures in universities and vocational schools, and presentations in seminars, conferences and congresses. All of them about being a family with a disabled child. One thing somehow lead to another, and all these things just seemed to happen, without me ever planning any of it.
I found myself being “The father” speaking out loud of the situation of families with children with disabilities. I was once told that I have an ability to make my private into something public. With the stories based on my own experiences from my own family’s life I seemed to be able to give an easier to understand picture of the life of families with children with intellectual disabilities.
Ability or not, I still strongly believe, that there is a huge need for us to tell our stories. When people hear stories from someone’s real life, it truly makes a difference and it makes the difficult situation more real, more understandable. Stories of families are easier to relate with and these stories give the general public tools to deal with for them difficult issues. Giving a face to a life with intellectual disability makes it easier to understand to people with no experience of the subject.
In many European countries intellectual disability still is a stigma. Something hard to understand and to live with. Something people rather avoid than face with. Something that does not happen to me but to somebody else. Something strange and scary. Something to be put away from our eyes. Something to be institutionalized.
This has to change and that is why we have an even bigger need to tell our stories. We must shout out to the world that a life with disabilities can be as full a life as any. We must make societies understand that people with intellectual disabilities have exactly the same rights as all others and their families have right to be just families. By telling our stories we make our private into something public.Inclusion Europe is a perfect platform for our stories. Let’s use it. Let’s share our stories throughout our network and give Europe tools to understand intellectual disabilities.
It was definitely a worthwhile visit
- The article has been published on Inclusion Europe’s website in february 2020
- about my trip to Manchester where I met with Learning Disability England and attended their conference
It always amazes me how easy it is to discuss with people whose thoughts are like one’s own thoughts. You simply do not have to explain anything, you just start a conversation and immediately you understand each other.
I invited myself to attend Learning Disability England’s annual conference in Manchester this week. Learning Disability England has for some time already showed interest in becoming a member of Inclusion Europe. I decided that it was time to find out more about them and their work.
When I told their Chief Executive Samantha Clark about my intentions, I was happy to be welcomed by her as their guest to the conference, and to arrive already the night before. We both seemed to agree that this way we would have had more time for getting to know each other and our work. The day of the conference was fully programmed with conference sessions and there was less time for anything else.
I was lucky to find out that my visit in Manchester happened between two really heavy storms. The storm Ciara was during the weekend before and another one was already developing over Atlantic Ocean and was about hit the British Isles a few days after my departure.
As I already mentioned, I arrived the day before the conference. First, I met with a few members of the Board of Trustees for a drink and after that we joined the others for a dinner organised for 25 persons, self-advocates, family members, academics and other professionals.
I had the chance to meet Learning Disability England’s Board of Trustees and Members of their Representative Body. Fantastic inclusion people! We all spoke the same “language” and understood each other like we had been working together for years.
Learning Disability England is built upon three different perspectives:
- organisations and professionals whose values are the same as those of self-advocates and families.
They talk about co-production, meaning that all parties should be brought together and that the users voice should never be neglected.
The Conference was interesting and it featured brilliant speeches. I did not have the time to attend every workshop, but the main point of my visit was to meet people anyway, and that I managed to do.
I was deeply impressed especially by one of the workshops. It was a presentation of three persons with Profound and Multiple Learning Disabilities (PMLD) and their support persons from Brighton.
These powerful self-advocates are members of a C4C group (Campaign for change), reminding us to always include everybody, also people with profound and multiple learning disabilities.
The meaning of not leaving anybody behind was showcased in an impeccable way in this workshop.As it always happens after meetings or events by Inclusion Europe or by our members, I felt very much empowered when leaving Manchester. It was definitely a worthwhile visit!
The start of a pandemic
- The article has been published on Inclusion Europe’s website in march 2020
- I wrote this letter to Inclusion Europe members about the Coronavirus emergency
I hope you are all healthy.
We are living a very exceptional times and it seems that this will go on for many weeks onwards. The news we hear daily are depressing as the Coronavirus is spreading further and further and closing businesses, silencing the streets of our cities and locking us all into our homes or into “care institutions”. What is happening now around the whole world is something we all have trouble understanding and it challenges our governments to act in ways that have not been tried before.
We all have trouble understanding everything that is going on, but for people with intellectual disabilities it is even more challenging. In this difficult time, we tried to support them by producing and collecting a high number of resources about the Coronavirus in easy-to-read and in different languages. You can read more on a dedicated page on Inclusion Europe’s website.
My owns sons, Markus and Robin, have been in their own homes now for more than two 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 have been able to go for short outings near the house where they live. We have tried to have contact with them through Facetime, but the quality was so poor; without the video the communication was very difficult.
Last Friday we managed to get Skype installed into their iPad and now we also have the video which helps a lot to communicate with them. This eases our distress a lot.
All the care/group homes in Finland have the same isolation policy which causes a lot of worry for the families. But on the other hand, our country also limits all kind of social contacts and the recommendation for everybody is to stay at home as much as possible.
As you have heard, our Europe in Action conference had to be cancelled. We are now looking for possibilities to organize a series of webinars to be able to use some of the planned program of the conference. We will inform you as soon as we know more.
Our Board meeting and General Assembly which were also planned to take place during Europe in Action have been postponed and will be held when it will be possible. We will inform you when we know more.
Unfortunately, the Coronavirus crisis created alarming situations in many countries.
Not only by closing people with intellectual disabilities inside the institutions or their own homes and leaving them in isolation from everything, but also by leaving many families without support.
Many organisations providing support to people with disabilities and families are also struggling for basic protective equipment, that would keep all those involved safe.
As the capacity of health care in connection with the pandemic seems to be insufficient in most of the countries there is also the question of priority in health care. I have heard some worrying news of situations where people with intellectual disabilities have been categorized as a group of people which would not get any intensive care at all. This kind of unacceptable discrimination has been called out by our members and many other people and organisations; equal value of all people must be the basis of any discussion.
This crisis has created a situation where nobody seems to know what to expect. We are all now restricted from living a normal life and we receive daily new guidelines from our governments. In this situation we simply have to do as told. The situation is new to everybody.
Again, we must be reminding governments and institutions that international conventions like the UN CRPD still apply and human rights have to be respected.
All Inclusion Europe staff are now working from their homes. I am in contact with the secretariat and we are planning together with other organisations ways to deal with this crisis and connecting with each other. We are currently planning a series of online meetings that will start this week and will keep happening regularly during the emergency. Read more info about the online meetings.
I am thinking of all members of Inclusion Europe and other organisations and individuals. I hope the current measures taken everywhere in Europe will work, and the pandemic will be soon under control.
I hope that you manage to keep yourselves and your families healthy. Let’s keep in touch!
Thirteen weeks of heart-breaking separation
- The article has been published on Inclusion Europe’s website in june 2020
- I wrote this letter to Inclusion Europe members about the Coronavirus emergency
Exactly thirteen weeks ago, on Friday morning, March 6th, just before eight o’clock, our sons Markus and Robin were picked up by their taxi in the courtyard of our home. The regular one-night visit here at the brothers’ childhood home, which had been part of the weekly routine for many years, was over, and due to their parents’ week-long vacation trip, there would be a two-week break before the next planned visit. That same morning, Helsingin Sanomat, the main newspaper in Finland, reported that four classes in a Helsinki area school had been placed in a home quarantine because one of the school’s students had been diagnosed with a coronavirus infection. Life in Finland continued to be otherwise normal. In the early hours of Saturday morning, we boarded at Helsinki airport a Finnair plane, which flew us to Spain.
Only a week later, things were very different. The main headline of Helsingin Sanomat next Friday shouted “Everything changed in a day” across the width of two pages. News headlines in the same newspaper described the situation as saying that rye bread and toilet paper had run out of several stores, the Helsinki Stock Exchange collapsed by ten per cent, the Helsinki IFK played against JYP in an empty auditorium, the Foreign Ministry called for all travel abroad and those returning from abroad were required to comply with a two-week home quarantine after returning to Finland.
We were still on our last day in the Spanish sun, on the Atlantic coast. The return flight to Helsinki was late Saturday night. We heard local news about declaring Spain into a state of emergency and a general curfew to be declared accordingly. From home, we received information about the isolation of the brothers’ homes and the closure of their daily activities starting Monday. We set about arranging the relocation of Markus’ and Robin’s day time personal assistants to work at their homes so that even some sort of regular activity and everyday safety structure would continue. During the same day, we received approval from all parties for this arrangement. We realized our home quarantine was postponing the brothers ’next home visit. However, we then assumed it would be possible again on the Thursday of the full week after our return, when the pause from the previous time would become three instead of the planned two weeks.
On the Monday after our return home, the new reality that we would come to live in an indefinite period of time gradually began to unfold for us and for all other Finns. The focus was facilitated by TV’s daily afternoon live Corona broadcasts, which also included government briefings. It soon became clear that no one seemed to understand the behavior of this virus and that’s why everything seemed so uncertain. Information about the recommendations was also given as binding provisions to the people. These, moreover, were even contradicted by experts from various fields, from day to day.
In spite of otherwise some oversized virus protection measures, we had upon our arrival in Helsinki witnessed an uncontrolled gap the size of Helsinki Airport. After arriving in Finland, the passengers had been instructed by the government to comply with that two-week home quarantine. However, this was in no way reminded of either during the flight or at the airport. After arrival everyone was freely allowed to choose their own way of traveling to their quarantine, even for hours traveling by public transport across the country. This gap yawned open for nearly two weeks because none of the authorities realized it was their responsibility to block it.
On Wednesday, March 18th, in their letter, the service provider responsible for the daily help and support of the brothers approached us families, saying that: “All visits are forbidden for the time being”
”The ban on visits applies to family members, the client’s personal therapists, assistants and other similar persons. We have previously instructed that our clients’ visits and vacations to relatives or acquaintances be postponed until the coronavirus epidemic has subsided and the visits are safe again. Despite this, some residents of the housing service have continued to be taken away from their homes.
Home holidays to families are forbidden! If a family, contrary to our instructions, takes our resident home for a vacation, the family is responsible for the care and upkeep of the resident themselves without additional services from the municipality or service provider. The client cannot be brought back home but is treated by the family until the coronary pandemic has subsided.”
No understanding of how difficult and complicated this situation is for both the residents and their families. No sign of compassion of any kind. No understanding of the feelings evoked by the sudden separation between residents and families. No wish to joint efforts of following these instructions. No offer or suggestion for cooperation. No expression towards the direction in which the Prime Minister, in her daily press conferences, had persevered and shown empathy “together we will find the way out from this too”.
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 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”. Our national broadcasting company YLE announced their intention to produce the seasons last short documentary about the Skype connections between different people during the Coronavirus emergency and asked us to participate in the program as one example.
After weeks of isolation, in early May, when the service provider announced relying also on the instructions given by the local authorities, we began to read the guidelines for service providers in our own home municipality. At that time, there was also a lively debate on social media about the legality of travel bans. On Twitter, some local Disability Service Officer found home visits not to be prohibited. Similar instructions had also been sent to the service provider from our home municipality and the instructions from Social Ministry’s lawyer was; home visits cannot be denied.
Helsingin Sanomat received a hint about the total ban on visits, and on May 13th the newspaper headed “Brothers with intellectual disabilities have been kept separate from their parents since March”. Human rights lawyers were also awake, and a newspaper article mentioned that reports had been sent to the authorities about the deprivation of freedom of movement. YLE’s Spotlight program took an interest in the topic and asked us for an interview.
Close contact with the other parents of other residents showed that everyone was already on the brink of coping with this weeks-long isolation. The government gradually began to open up society after the lockdown. Schools would open in mid-May, restaurants would be expected to open from the beginning of June, and gatherings of less than fifty people would be possible.
We the families decided to write to the service provider and require them to follow the Ministry’s unambiguous instructions. The first letter was answered, repeating the old instructions. With the second attempt, we received a response that met with our expectations. Home visits were not recommended but were not either prohibited. The work of personal assistants and therapists at the residents was also made possible again.
Yesterday, we raised our flag not only to jubilate the Official Flagship Day of the Finnish Defense Forces but also to jubilate the end of thirteen weeks of isolation. We also shed some tears for the joy of seeing each other again and for the disappearance of the long-eroded anxiety of separation. This was witnessed by – taking into account safety distances – YLE’s Spotlight two-person team, which now makes a documentary of the isolation of people with disabilities during the Coronavirus emergency.