In english

On this page you can find my following articles in English:

Share your stories (December 2019)
It was definitely a worthwhile visit (February 2020)
The start of a pandemic (March 2020)
Thirteen weeks of heart-breaking separation (June 2020)
Equally deserving, equally entitled and equally human (December 2020)
Service provider with contempt for human rights and lives cannot go without consequences (November 2021)
People with disabilities must be included in Crisis Management plans and procedures (March 2022)
A summer that never came (June 2022)
Long journey to a ’new-new’ home (Autumn 2022)
Prostate cancer and life, journey of opportunity (May 2023)
Inclusion indicators are here (November 2023)
Families – a valuable resource for disability movement (January 2024)
I saw much more self-advocates’ participation (September 2024)

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:

self-advocates
families
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 13^th 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.

Equally deserving, equally entitled and equally human

This article has originally been published on Inclusion Europe’s website in December 2020

The year 2020 is coming to its end. This has been a very different year. It has been a year of the pandemic and the world we used to know has changed significantly. However, and sadly, for people with intellectual disabilities, most of the problems already existed, and have simply been exacerbated and sometimes made visible to the general public.

You, our members, have during this year shown what strong European inclusion movement is made of. I feel proud to be President of this movement and I wish to express my sincere gratitude to all of you for your commitment!

  You undertook a tremendous amount of work to provide support during the pandemic. You advocated to uphold the rights of persons with intellectual disabilities and their families across Europe. You provided support and care. You stepped in to fill so many gaps in how the governments informed the public about the situation. Governments turned to you in the time of crisis.

  All your work demonstrates the power of our inclusion movement. It demonstrates the value of our work for inclusion. It demonstrates the need of us constantly reminding our societies about the UNCRPD and the human rights that belong to everyone.

Inclusion Europe connects organisations of people with intellectual disabilities and their families throughout Europe. First and foremost, we represent our member organisations in 40 European countries. But as our main goal is full inclusion of people with intellectual disabilities across Europe, we can say that we represent families with more than 20 million people.

These families consist of people with intellectual disabilities, their mothers, fathers, sisters, brothers, sometimes uncles and aunts, grandparents.

For almost 35 years I have been a member of a disability organization – local, national, European and International. During these years I have met a lot of parents and other family members to children with intellectual disabilities and there is one thing that never ceases to astonish me.

I call it the power of peer support. Meeting with other parents or family members of children with intellectual disabilities is always so easy – we seem to be connected immediately. We do not have to explain ourselves, and we understand each other from the very first words.

I am sure that I will keep on experiencing this power also during the coming years. Because I know that we will use it to spread our message of inclusion. We will use it to strengthen our movement in Europe. We will use it to make our voice heard. We will use it to promote community living and to promote a Europe where people with intellectual disabilities are included – equally deserving, equally entitled and equally human. We will use it to encourage and support the families to live like any other family.

Also, our secretariat in Brussels has throughout the pandemic worked under circumstances that have never been experienced before. Neither the pandemic nor the circumstances are over yet. We have had new staff members and interns joining us and working with us without a possibility to meet each other. All our events and meetings went online, and the work plan was applied to a digital environment. The staff has been isolated from each other, working from their homes, and yet been able to maintain a sense of belonging.

I wish to thank each and every single one of you in our secretariat for your hard work and your flexibility, determination, control and endurance during this very hard year.

I also wish to thank and express my admiration to all of our members and other organizations supporting people with intellectual disabilities and families during these difficult times. Your work has been essential.

And all my thoughts, solidarity and respect to all those with disabilities and family members dealing with the impact of the pandemic and supporting each other.

I wish us all a very Merry Christmas and, definitely, a much better New Year 2021!

Service provider with contempt for human rights and lives cannot go without consequences

This article was originally published in English on Inclusion Europe’s website in November 2021. I wrote about a recent case in Finland of boy being tied day and night. Finnish version of the article was published in Helsingin Sanomat.

The UN CRPD affirms for persons with disabilities the right to choose a place to live, with whom to live, and how to live. In Finland this is supported by strong disability law, which says that municipalities are responsible for arranging the provision of individual help and support.

Large institutions for people with intellectual disabilities have been closed in Finland. But the institutional way of providing services still seems to be alive. Medical care practices prevail services for people with intellectual disabilities. Person with intellectual disability needs help and support based on his or her individual needs to enable them to live independently. They don’t necessarily need nursing and care.

Presence, coexistence, appropriate guidance is needed. Where one person copes with a few weekly support visits, others may need another person’s presence and help twenty-four-seven. All help and support must ensure independent life based on the person’s own skills, and their full participation in the community.

Genuine, understanding approach. Respect for person’s human rights. Empathy, being human to a human. These are the tools needed.

A recent documentary on Finnish television showed a serious human rights violation in which a boy with autism was strapped to his bed during the nights, and in a chair during the days.

This went on for many years, and the service employees said it was approved by their supervisor. They did not dare to question it. The care home where this happened had been purchased 5 years ago by one of Finland’s a largest service providers owned by international venture capital.

Finnish municipalities have legal responsibility to arrange help and support to people with disabilities. The municipalities can either provide the service themselves or purchase it from private providers.

During the past 15 years, with the adoption of a new public procurement law, hundreds of family-owned small service providers have been bought by large multinational companies. The provision of housing services for person with disabilities has gone through a structural change. It has been changed into a market, and municipalities fulfil their responsibility mostly through tendering and price competition.

The ideology of tendering has its foundation in the fact that the service can be standardised and commercialised. But the needs for help and support of a person with intellectual disability are always individual, and there are no standard customers or needs that would fit into the service provider’s pre-configured concepts.

Intentionally providing a service without adequate resources, or without regard to individual needs ultimately results in inhuman treatment, as the documentary just showed.

Ultimately, the responsibility lies with the municipality and with the service provider. Service provider which acts illegally, with contempt for human rights and lives, cannot remain without consequences.

A summer that never came

This article has originally been published in Finnish in my own blog in June 2021

The boy was born as planned by caesarean section. As early as half past nine in the morning, many years ago, on Monday June 3^rd, I had my fourth child in my arms, a ten-point boy, our youngest one.

I looked into my son’s eyes and got scared. Something came to my mind that I resolutely and firmly rejected. Something familiar. But as we were assured everything was fine and as we also wanted to protect ourselves, we tried to shut down all such thoughts. Summer was about to begin. A summer that never came to us.

The boy was restless. The boy seemed to be screaming constantly. It was clear to us that he was not feeling well. Everything was not alright. We read in a magazine the results of research that a child’s colic problems were often caused by a milk allergy. In mid-July, my wife stopped breastfeeding. The screaming stopped the same day. We were dispatched for allergy research, which then somehow turned into neurological research. In August we found ourselves in Children’s Castle, a well-known Finnish disability research hospital. Summer went by. A summer that never came.

Just as we had somehow learned to manage our life with our older son with intellectual and multiple disabilities, a five-year-old. Just as we finally felt mentally balanced in life with intellectual disability in our family. Just as we were content to schedule our lives for the idea that he, like his siblings, would someday become independent and move away from childhood home in 15-20 years. Just then the fate decided to re-organize our lives in a new order. The fate decided to add five more years to our schedule, as if leaving us in class five times at a time, as if returning to the starting point, squere one. The fate brought us another child with intellectual and multiple disabilities to raise. How does one manage to live with all this?

Well, after stumbling through the first shock, we somehow did. Help for mental distress was first found in family therapy offered by the rehabilitation department of the clinic and later during many years to come in individual therapies.

Last summer, the 30th anniversary of our youngest one was celebrated in a corona-safe way together with our whole family and his and his brother’s common neighbors and staff members of the service provider. It is difficult to understand that more than three decades have already passed since his birth. Where have all those years gone, how did we struggle through them.

It has not always been easy. But is life meant to be easy. We have learned to understand difference, to tolerate uncertainty, to live with the constant fear of death.

We have most certainly survived with the individually planned help and support of the right kind and dimension. With support of peers, with support of each other and with support of our whole family, gaining strength from all these, gaining strength from each other. We have survived by insisting on the rights of our children and the rights of our family. Of course, arranging that help and support has sometimes required “talking in capital letters”, it has also required the use inappropriate language. But having thus resolutely endured to continue in that manner through the decades, we can now see that we did manage to live with all this.

While fighting for the rights of our own children, we have at the same time come to help others who are fighting similarly. Being a pre-fighter has also led to interesting positions in disability organizations locally, nationally and internationally.

Each of us live their own lives, playing with the cards that fate has dealt to our hands. I have often felt that the cards in my hand do not seem to form a combination that would secure my way in the game of life. But with time, with patience, and by watching the game of others, I can now see in my hand the combination with which I am achieving an overwhelming victory in this unique game of my own life.

Happy Birthday Robin!

People with disabilities must be included in Crisis Management plans and procedures

This article has originally been published in my own blog in March 2022

Russia attacked Ukraine 24^th 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!

Long journey to a ’new-new’ home

This article was originally published in The University of Minnesota’s ”Impact” magazine volume 35 number 2

One of the key transitions in the lives of people with intellectual disability and their families is, without hesitation, the time when the child moves out of the family home. Twenty years ago, when our two sons, Markus and Robin, where approaching this milestone in their lives, the options were scarce. The available model was a group home with a lot of shared space with other residents.

At that same time, a paradigm shift was underway. People with disabilities were becoming equal citizens, de-institutionalization was the direction, and the outlines of what would become the United Nations Convention on the Rights of Persons with Disabilities began to take shape.

For us as parents, it was clear that our son Markus, born in 1986, would be entitled to a life of his own, just like his older brother and younger sister. So, in our family, we always had the idea of him moving to a home of his own.

When Markus’ younger brother, Robin, was born in 1991, we understood that both brothers would someday need a place to live and they would move out of our home together. They had become very close for many practical reasons, like their concurrent rehabilitation and respite care periods to allow the rest of the family some free time, their joint taxi rides to school, and so on. They needed each other, and they needed security and stability to continue living with each other.

During 2004, we started discussing, along with the other parents of the students in Markus’ and Robin’s school, the future living arrangements of all our children. Nobody was happy with the idea of group homes. We knew that our children had the same rights as everybody. We learned of better solutions, especially in our neighbouring country Sweden.

As a group, we decided to start planning a house of our own with our children as they approached adulthood.

We were like-minded parents from eleven families with altogether twelve young adults moving out from their childhood homes. We had the same minority language and cultural backgound, we shared peer support, and we were unyielding advocates for the rights of our children. We formed a well-functioning working group. We had a clear, common goal, and a dream we were determined to make come true.

Little did we know what we had ahead of us when we started. Eight long years later, however, we celebrated the opening of Star Home, as we had named it. Our goal was to become a star example to all others, a leading example of how people with intellectual disability can live and be included in the community.

We met regularly, once every two months. We knew each other, and our children were friends and classmates. They had already formed a group. Our children had different needs, which all should be taken into consideration in the floor plan. We had many ideas when we started planning of the layout.

After numerous meetings and a lot of planning, we concluded that it is neither the floor plan nor the walls that make the house a home. It is the staff with a big heart that makes it a home.

So, we left the layout to professionals. Our task was to pave the way for the young adults’ transition and to plan how we could support the future staff in their work.

Two years had passed when we contacted a Finnish housing foundation with an innovation called “the two-door model.” This was based on each young adult having a real home of their own. A home consisting of their own front door, living room/kitchen, bedroom, bathroom, and a second door leading to the service provider’s and common premises. The perfect model for our group!

We now had a contractor to build the house. The foundation’s subsidiary, a service-provider, could provide the help and support needed. A building plot in the middle of a detached-house community was found and reserved. We had an address to visit, in a nice neighbourhood.

We did visit that address regularly with Markus and Robin to familiarize them to their future home’s surroundings. We started talking about the “new home” with them, but there was one problem. They already called their respite care “new home” and now we seemed to be mixing them up. Sharp as they were in forming meanings, this one became in their vocabulary “new new.”

Abruptly, our project came to a stop. Like in so many similar projects, we ran into a phenomenon called NIMBY (Not In My Back Yard). When the neighbourhood found out about a house for people with disabilities being planned in their area, they made a complaint against building it. There was no real reason, other than the fact that when people do not know enough about disability, it tends to create fear. This was more a rule than an exception when trying to build houses for people with disabilities.

Complaints take time away from progress, but cannot stop strong advocates like us. We continued with our plans and visits to the building plot. Ultimately, the formal complaint was not successful, as they seldom are. Finally, the building plot and the house itself started to take shape. We started perceiving the different apartments there and could “go into” Markus’ and Robin’s new homes. These visits were essential and gradually the brothers got to know “new new.”

Half a year before the actual move, we were offered a unique opportunity. A ceramic artist had heard of our project and got inspired by the name Star Home. Together with the future residents, she wanted to make a large wall mosaic artwork in one of the common rooms. This was a huge kick of luck for us as we became busy working together the next six months.

Every Wednesday, each of the future residents was given a sector of the artwork to make. They worked on it together with a mother or a father. The artwork consisted of 64 different sectors, each with 225 small mosaic tiles. Eventually, 27 of the sectors were finalized by the five participating residents.

Today, this fantastic artwork, “The Four Seasons,” decorates a wall in Star Home, creating a hint of the atmosphere of an ancient Roman spa. The room was named Mosaic Room accordingly and it is today a cosy, all-activity room in Star Home.

The house itself was eventually completed and was preparing to welcome its residents. We and the brothers were ready to face a new phase in our lives. Markus and Robin were eager to move to “new new.”

Since the opening of Star Home a decade ago, there have been ongoing staffing issues. We’ve had five directors, an endless stream of changing employees, temporary manpower, and a change of service provider. Markus and Robin are incredibly flexible. With their unbelievable built-in elastic force, they have managed through this huge parade of changing hands and faces around them.

We did everything in our power to make their transition as smooth as possible, but some things are beyond our power. The process we have lived through during the past ten years is another story, it would need another article, if not a whole book of its own. So much has happened, so much did go wrong.

Still, Star Home continues to be Markus’ and Robin’s home. Do they understand it? I cannot tell, because in their world it is not the goal but the movement that is important. They always seem to be expecting the next move to happen. When they are in Star Home, they communicate about going someplace else. When they visit us, they are eagerly leaving for “new new.”

A hint of their perception of home was revealed when the pandemic broke out in 2020. For thirteen weeks, we were totally isolated from Markus and Robin. The only contact was through video calls. Through those calls, their main message to us consistently was their sign language sign for “home.” They wanted to come home to us.

Initially, this made us feel sadder, especially because we had no idea how long the isolation would last and because we didn’t know how to explain the situation to them. We are a deeply connected family, but Markus and Robin have lived with housing interruptions their entire lives due to respite care and their own hospitalizations. I suppose their childhood home is still their safe harbor, but their “new new” is equally important – to them and their futures.

Prostate cancer and life, journey of opportunity

This article has originally been published in my own blog in June 2023

For the past four months, I have been publishing blog posts in Finnish under the subtitle ”Stories and feelings about health and experiences with healthcare services”. I mainly write about my own personal feelings and subjective experiences as a customer of the healthcare system. There are altogether twenty-five blog entries in the entirety of this journey of my experiences.

My journey in healthcare starts in November 2022. At that time, I will be living in the aftermath of a prolonged flu. Unbearable back pain is caused by continued immobility due to a flu that has lasted too long. Regular Nordic walking in varied terrain has been a lifeline for me for years. With it, I manage to keep my back in shape and the pains away. On the tenth day of crippling back pain, I finally end up seeking help to my situation through our public health care center.

At that time, of course, I can’t imagine what kind of journey I’m about to embark on when I am trying to get to myself a doctor’s appointment. I am blissfully unaware of the small tumor nesting inside me and the effect its existence will have on my life over the coming winter and spring.

In the routine laboratory tests ordered by the doctor in November, an elevated PSA value is revealed. There is a suspicion of something more serious. I understand that right away. However, the doctor does not describe what the issue is. She’s not talking about cancer. Repeated tests and prostate palpation lead to a referral to a hospital. After mid-January, an MRI x-ray will be performed. That’s where the tumor is noticed for the first time. The radiologist classifies it in his report. The urologist who tells me the results of the scan on the phone doesn’t talk about cancer either. She makes a referral for taking a biopsy.

I familiarize myself with the classification of the MRI finding in the statement. High risk, clinically significant cancer is likely to be present. I understand that now we can talk about cancer with a high probability. At the hospital, the doctor performing the biopsy at the end of February is frank. He states that the existence of cancer is being confirmed here with the help of this biopsy. A couple of weeks later, on March 10^th, in the pathologist’s statement, the tumor is described as aggressive cancer.

For the sake of its agrressivity, the next stage is to find out if there are any metastases to be found. After that, we can meet with the urologist on the last day of March to discuss treatment options. The treatment consultation concludes with RALP surgery, which will take place on the third Friday of April. Modern robot-assisted laparoscopic surgery allows one to leave the hospital already the day after the operation.

Now it is almost three weeks since the surgery. According to the surgeon, it went as planned. Recovery is also going quite well. Surgical wounds are healing. I’m getting rid of the indwelling catheter that I carry with me at home for a week. I can stop taking the pain meds right after that. I am at home on sick leave from my voluntary work. I can go outside every day. I live in my new, hopefully temporary reality. That reality is resolutely scheduled by the very unpleasant incontinence that came as a consequence of the surgery.

Almost half a year has passed since I broke my back and applied for healthcare services. I have experienced a lot during that half year. There have been many thoughts in my mind. I have felt painful emotions, a flash of fear, I have also had some moments of panic. I have experienced distressing lows while queing somewhere or waiting for test results. I have acquired detailed information about my situation by familiarizing myself with the latest news in the field and reading a book that tells everything. With the progress of spring, I have gained strength from the light, acquired support for my inexhaustible thirst for information from databases and learned to understand the words they contain.

My journey accommodates quite a number of healthcare employees, professionals working in different positions. But I wouldn’t characterize my journey as having done it together with them. All by myself and with the support of my loved ones, I have travelled my journey. In each of the different phases, there has always been a new, never-before-met healthcare professional. I have met only three people more than once on my journey. The primary health care center doctor (twice face to face, once on the phone), the surgeon who performed the surgery (on the morning of the surgery day and after the surgery in the recovery room) and one of the nurses in the bed ward (did the evening shift and the following morning shift). I have never met face to face all these people who influenced my journey. With some of them I haven’t even had an online or phone connection. But undoubtedly, they all have had their own important role during my path of treatments. Each of them has been a very necessary link in my chain of health care steps. At times I have had a feeling of being like a pinball ball being fired onwards over and over again.

A total of one hundred and sixty-five days has passed since the beginning of my journey, until I came home from the hospital after my surgery. Afterwards, it doesn’t seem so long. But during that journey, it has felt painfully long at many points. Especially during the distressing thoughts of the beginning of the journey, in so many moments of uncertainty and in situations like the peaceful atmosphere of Christmas with my whole family. The waiting is long, especially in the midst of unclear doubts, in the absence of dates for upcoming examinations and waiting for information on the results of examinations. It feels far too long when the diagnosis has been without confirmation, when you have struggled in the jungle of treatment options and familiarized yourself with the touching stories of your peers online. Living through those days one day at a time, it has more than once felt like agonizingly long. The transitions from one phase to the next are almost unbearable.

Even though I am now writing about the end of my journey, it will still be continuing it for at least another ten years. The final check-up with my surgeon is scheduled for twelve weeks after the surgery and before that another visit to the blood tests. Of course, how to proceed from there depends on the final inspection and its findings. The organs removed during surgery are examined by a pathologist, and if cancer will be found outside the tumor itself, a follow-up plan is made based on that. The current information about the future is PSA measurement with a blood test ten years from now. At least every six months in the beginning, later perhaps once a year.

In my blog posts, I have several times emphasized my need to get relevant and up-to-date information. That’s what I have also got, but only by actively looking for it myself. After the final diagnosis was confirmed – at that point the journey had already taken one hundred and sixteen days – a Personal path was opened for me under a designated website under the title Prostate Cancer. That Personal path contained all the necessary information, including the steps I had already left far behind. I wish I had been able to make that path Personal already at the very beginning. It would have been extremely useful for me and solid support from the very first steps.

We are all individuals. Individuality also includes the fact that our attitude to the phenomena and events we encounter in life is individual. In addition, each of us have very individual everyday resources, the resources that have been accumulated during the life we have lived and the experiences it has given to us. Based on these everyday resources, we are capable to receive information and handle situations that come before us. While I am downright thirsty for information and feel the need to be doer in my own path of treatments, someone else has the complete opposite attitude. All of this should better be taken into account at the start of the journey.

Cancer is a nasty disease and as a word such that it takes people’s thoughts immediately to death. In my darkest moments, I too, have been planning my funeral. Still, we know that a huge proportion of cancers are treatable and curable.

Prostate cancer is the most common cancer in Finland, even more common than breast cancer. Prostate cancer is mainly a disease of ageing men. If all men were to undergo accurate examinations, the probability that prostate cancer cells would be found in a man’s prostate would approach the man’s age in years. It is 60 % for a 60-year-old and 80 % for an 80-year-old.

At my age, that probability is 68 %. No wonder that prostate cancer was found in me.

It has been estimated that one in ten latent prostate cancers could develop into a symptomatic disease. Most men diagnosed with prostate cancer will never develop symptoms of it. They also wouldn’t die of it even if the cancer was not treated at all. Most prostate cancers progress so slowly that the patient’s other diseases or advanced age significantly shorten the time when prostate cancer would have time to progress.

Six months ago, I didn’t know I had prostate cancer. Three weeks ago, right before the surgery, I could not have known about it without the tests. My cancer had no symptoms whatsoever. I was in excellent health, and no one could tell that I had an agressive prostate cancer inside me. The urologist told me during the treatment consultation that if nothing was done now, the cancer would have spread in five years, and in ten years I would probably be dead.

I have been given the opportunity for additional years in my life. I am grateful

Inclusion indicators are here

This article has originally been published in my own blog in November 2023

There has neither been real data about the situation of people with intellectual disabilities and their families in the European Union nor in the whole Europe. Too much has been and still is based on assumptions that thanks to the ratification of the UNCRPD and thanks to national laws the rights of people with intellectual disabilities should be properly respected and protected.

However, the fact that member states ratify the UNCRPD and that the member states have national disability laws is not enough. Both the UNCRPD and national laws need to be applied in practice, into the everyday lives of each individual citizen with intellectual disabilities.

Inclusion Europe has taken a substantial step to cover a gap in information about the situation of people with intellectual disabilities and families. We have collected relevant and reliable data throughout Europe, provided by national organisations who know the situation best as they represent people with intellectual disabilities and families. From this data we compiled country-specific inclusion indicators. A simple tool which shows how inclusion has been brought into practice in 29 European countries.

Now we finally have data which everybody has been asking for and which has been completely missing until now. The indicators based on this data give country-specific information of where there is still work to be done, and where EU-resources must be directed to, to improve the situation. This is a good beginning, but the data collection needs to continue in a yearly basis to

collect the same data also from rest of the European countries,
show where Europe limits the rights of people with intellectual disabilities
be able to follow the direction of the indicators and
to give country-specific recommendations and resources for improvements.

Inclusion indicators give policy-makers valuable information of inclusion in Europe. The indicators contribute to implementation of the EU Disability Strategy. They help people with intellectual disabilities and their families to achieve full inclusion.

Inclusion Europe will continue to collect and evaluate this information, so that governments cannot hide away from their responsibilities in respecting rights and inclusion of people with intellectual disabilities.

At the same time, we expect and demand that governments and the EU collect and evaluate relevant, specific information themselves. It is their responsibility.Inclusion of people with intellectual disabilities is a human right guaranteed by the UNCRPD. Inclusion means equality. Inclusion means belonging.

Here is the link to the first ever inclusion indicators which were launched in the EU Parliament in Brussels on November 29th 2023.

Families – a valuable resource for disability movement

This article has originally been published in my own blog in January 2024

Receiving information or even a suspicion of your child’s possible disability is overwhelming. Our family has experienced this twice. It can be a huge shock for any parent and for the whole family. It is something you really cannot prepare yourself for. A phrase future parents often hear during pregnancy is “A boy or a girl, as long as it is healthy”. Whether it is question of a newborn or an older child who then isn’t “healthy”, families drift into a state of considerable confusion.

This situation causes sorrow, anger, fear, and disappointment, because your dreams have been shattered. You may feel lost and irresolute, because of the sudden change in your plans and lack of vision for the future. How to move on. How to cope with life with a child with a disability.

Eventually families will learn to live in their new reality. From my own experiences, I wouldn’t say that you will accept this situation or adapt to it. Somehow you just find yourself managing your new everydaylife. Is there any other choice? Gradually families turn into fighters, because they constantly have to defend the rights of their child with disabilities. When meeting other parents to children with disabilities, it becomes clear to them that they are not alone in their situation.

Often parents or other family members of children with disabilities talk about how easy it is to meet with other families in similar life situations. They feel connected immediately. They do not have to explain themselves. They seem to understand each other from the very first words. Without any common history. Without ever having met with each other before.

Many disability organisations have started from such encounters. Families have had a crucial role when establishing them. Families finding each other have joined their forces and become advocates. During the past decades they have initiated and run associations which have become significant social actors. First locally, then regionally and nationally and finally into global movements.

The task of a caretaker and producer and coordinator of the help and support falls to the family of a child with disablities. It is demanding and long-lasting. No matter what kind of disability, childhood and youth last for two decades, and during growth, the need for different kinds of help and support is continually changing. Even in highly developed welfare states, the social and healthcare systems which people with disablities come across with, operate as very specialized and separate systems. Professional people representing different services stay strictly in their silos, never meeting each other.

Almost during four decades, I have described in a picture the network of help and support providers surrounding the family. It easily consists of dozens of individual professionals. The family of a child with disablities who needs a lot of services has to take responsibility for applying for, organizing and coordinating various forms of help and support. Families who have a child with a disability describe their experience to get disability services as a fight and dealing with endless bureaucracy. You learn to live with the disability itself, but the paperwork is exhausting and drains your strength.

When children with disabilities then grow into adulthood, they can become self-advocates. It is their turn to become active in disablity organisations. Nothing about us without us. This is the slogan that has been in use in the international disability movement since the UN Convention on the Rights of People with Disablities was first adopted in 2006. People with disabilities and their families had a significant role in drafting the convention.

But people with different disabilties are different. Not every adult with a disability has the ability to become self-advocate. Some only can express themselves in a very limited way. Some have difficulties to understand their living environment. Some experience difficulties in communication and in being understood. Some experience difficulties in understanding the meaning of used terminology or words. Their family members’ support is very much needed.

Such is often the case when we talk about people with intellectual disablities, especially those with high support needs. People with intellectual disabilities are not a homogene group of people. They are all individuals like any people, with individual needs, with individual challenges based on their individual skills and abilities.

Intellectual disablity means limitations in cognitive functioning and skills. These limitations are in conceptual, social and practical skills – such as language, social and self-care skills. Because of the limitations they develope and learn slowly or differently. People with intellectual disablities can be dependent on other people’s constant help and support to understand others and to be understood. Without help and support their own opinion could not be taken into account.

People who know them well are needed. People who have spent time with them to have learned to understand them. People who have spent time with them to know their needs. People who have spent time with them to be able to communicate with them and to be able to interprete them.

Most often these people are the families. Mothers, fathers, siblings, uncles and aunts who have been living together with them. They have common language, even when there doesn’t seem to be any known language at all. Their communication may be based on facial expressions, gestures, sounds, signs, single words or sylables or a combination of all these and yet, they get understood. Over the years people just learn to understand each other even without any spoken language.

Families are important when it comes to communication, to understanding the needs and to self-expression of people with intellectual disbilities. Families are essential in the fight for their rights. Families are essential for “nothing about us without us” to become a reality also to people with intellectual disablities.

We parents of adults with intellectual disabilities regularly face situations where our role is being questioned. Our role as an expert, a defender of rights or a recipient of information. People say that we interfere too much in our childrens’ lives and that we protect them. People say that we are violating their right to self-determination.

According to legislation the age defines a person as an adult, without taking into account the person’s emotional age. The emotional age of persons with intellectual disabilities may have stayed at the age of a young child going to kindergarten or elementary school. They perceive the world like a child in that age does. Of course, combined with the life-experience equivalent to their chronological age. What is the right of self-determination of a child of that age, what is the ability of a child of that age to bear responsibility for their own choices.

Need for their family members’ close presence in their lives does not end in the adulthood of a person with intellectual disabilties. It is so because of the very nature of their disability. It is essential that families are involved in the lives of their children with intellectual disablities, even when they reach adult age. No one knows our children as well as we do.

Regarding people with intellectual disabilities, we their families are very much needed. Because of our adult childrens’ emotional age. Because of our unique communication relationship with our adult children with intellectual disablities. Because we families know our children best and are the best experts in their help and support.

The knowledge and expertise of families is valuable. It is a free expert resource that should be in active use and utilized. Instead of underestimating, depreciating or questioning the role of families, it must be strongly promoted and appreciated. Working structures must be created and developed for it. Wide co-operation is needed so that we can all together work towards our common goal, the good life for our loved ones.

Our role as family members and advocates in our childrens lives needs to be recognised and acknowledged. Our place as active players and stakeholders in disability movement needs to be recognised and acknowledged. The status of families and family members as activists needs officially to be confirmed and permanently strengthened.

Only then we can guarantee that “nothing about us without us” concerns equally all people with disablities. Equally also those who learn slowly or differently. Equally also those with high support needs. Equally also those who themselves may not have ability to defend their human rights.

I saw much more self-advocates’ participation

This article has originally been published on Inclusion Europe’s website

The 17th IASSIDD World Congress took place in Chicago, USA, August 5-8, 2024. IASSIDD (the International Association for the Scientific Study of Intellectual and Developmental Disabilities) Congresses are organised every third year, now five years had passed since the previous one in Glasgow 2019.

This was my third IASSIDD World Congress and I was extremely glad to find out one very good and positive development. This World Congress introduced self-advocates as co-researchers, highlighting their expertise, and their lived experience. The expert role of families, parents and siblings was also recognised more clearly than before.

Amongst the 1000 participants, there were a lot of self-advocates and family members, and numerous presentations were about inclusive research with self-advocates as co-researchers.

Part of the Congress program and an instructions booklet were published also in easy-to-read English.

Despite the good intentions the Congress was not inclusive. Majority of the speakers, especially in parallel sessions, talked far too fast, making it very difficult to follow, and near impossible for support persons to do their work well. Means of improving event accessibility such as the red, yellow and green cards were not in use.

There were many interesting topics at the Congress. Having several parallel sessions running at the same time makes it difficult to choose from. You inevitably have to prioritise and will miss many important topics and sessions.

All ten keynotes were truly good and well presented. There was, however, one that struck me, maybe because it was about something we all struggle with constantly; “How to overcome intellectual disability stigma”, by Professor Katrina Scior from the UK. Professor Scior has been working with self-advocates for a long time. One of them is former board member of Inclusion Europe, Harry Roche.

Katrina Scior’s keynote included an approach which I gladly share: “It is time to desist from using established models and campaigning efforts to reduce disability stigma and instead position people with intellectual disabilities not only at the centre but as the driving force in efforts to overcome stigma.”

This reminds of one the centre-pieces of Inclusion Europe work: Making sure every possible self-advocate can tell their story face to face with those who need to hear it.