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Tribute to Jolijn and Jan: two strong advocates from the Netherlands

Last week, we received the sad news that two colleagues and self-advocates from the Netherlands, Jolijn Santegoeds, EDF board member and representative of the European Network of (ex) Users and Survivors of Psychiatry (ENUSP) and AE former Council of Administration member, Jan Verhaegh, passed away. We wanted to pay tribute to Jolijn and Jan and their crucial fight for the rights of those who are too often forgotten.    

Jan Verhaegh joined the Council of Administration of Autism-Europe in 2010 until 2020, having been diagnosed with Asperger Syndrome at 60-year-old. This delayed diagnosis meant that Jan did not get access to any support nor understanding growing up, and later on as an adult. Instead, he was separated from his parents at a young age and sent to a very strict school to be made obedient. He later married, had two children and became a teacher, but he also experienced severe mental health issues. Jan therefore became active in organisations of users of psychiatry, first at the national level and then at ENUSP in 2005.

An enthusiastic European, after being finally diagnosed with autism, Jan got involved in Autism-Europe where he was a strong voice for autistic adults and an ardent proponent of the participation of self-advocates in the organisation.

Jan was glad to see that society was evolving:

“Autistic people are a kind of aliens without the possibility to phone home because there is no home which understands you. That situation is changing and that is very positive.”

We will ensure that we carry his legacy through our work, and we will always remember Jan for his sense of justice, as well as his erudition, infectious laugh and kindness. Our thoughts are with his much loved family and friends.

Many members of AE shared messages to remember Jan:

“Jan was like an older brother for me along the way to promote the rights of people on the autism spectrum, since we joined AE together: a constant stimulus with smart and strong ideas from a young and lovely mind inside an old body. Jan was so strangely amusing that even a bus ride or a short walk turned into unforgettable funny moments with sweet laughter and subtle jokes.”

Pietro Cirrincione (Italy)

“I am saddened to hear of the passing of Jan as I had not heard. Jan was also for me an extremely special person for when I first entered into the world of Autism-Europe, trying to find my way as one of few people with a diagnosis trying to make a contribution. I saw him as a harbour of safety and a place I could share my worries and hopes without judgement. He was a giant of a man who had just as large a heart.”

Monique Post (The Netherlands)

“My condolences to Jan’s family and for all of us in Autism Europe. Jan will always be in our minds and hearts.”

Natalia Blanco (Spain)

“Jan was a reference for all of us.”

Marta Roca  (Spain)

Last week, we were also very saddened to hear of the passing of Jolijn Santegoeds, an EDF board member, representative of the European Network of (ex) Users and Survivors of Psychiatry (ENUSP) and co-chair of the World Network of Users and Survivors of Psychiatry. Autism-Europe had a long-standing cooperation with Jolijn through the Withdraw Oviedo Campaign.

Jolijn dedicated her life to raise awareness and fight against forced treatment. She inspired so many around her.  We want to echo the words of Yannis Vardakastanis, EDF President, who said:

“The loss of Jolijn is unbearable. We are going to miss her deeply in all of our work- personally and professionally. Jolijn was a leader in the disability movement and shone a light on injustices everywhere. We need to continue Joljin’s fight for the rights of persons with psychosocial disabilities.”

You can read more about Jolijn here.