It is with deep sorrow and a very heavy heart that we mourn the loss of Jolijn Santegoeds: our 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.
We will always remember Jolijn’s kindness, sense of justice and commitment to support and fight for our rights.
Despite difficult personal situations, Jojijn was always active and present at EDF’s activities. Jolijn’s opinions and constructive inputs shaped and improved EDF’s position across a range of issues, from our campaign against Coercion on Mental Health to our response to COVID, passing by our work on accessibility and standards.
But Jolijn did more than that – Jolijn’s presence, kind words and interest in people’s lives and personal situations made talking with Jolijn a highlight of people’s days. Many of us will carry these conversations with us.
Jolijn was a person that experienced first-hand the abuses that persons with disabilities are subjected to, including solitary confinement, forced treatment and housing insecurity – as such, we have renewed vigour to fight against all these abuses. As a voice for persons with psychosocial disabilities – and lived experience – Jolijn’s activism touched many of us. We will carry and try to emulate Joljin’s example, always having time for people in need and using all channels possible to improve their lives.
The loss of Jolijn will affect us all. We will continue Jolijn’s fight for a just world, one that does not put aside people with psychosocial disabilities. A world that is free of coercion, torture, and forced treatment.
You can read Jolijn’s own words in a series of blogs that Joljin drafted:
- We find ourselves in crucial times: Disability Voice newsletter introduction by Jolijn Santegoeds, EDF Board Member.
- Vote against the “Additional Protocol to the Oviedo Convention”
- Better no tough approach to rioters (Netherlands)
- Mind the gap 1/4. Facing a human rights emergency. COVID19 vaccination in institutions is not enough
- Mind the gap 2/4. What is behind all this publicity about COVID 19 vaccination? Some concerns about the plan
- Mind the gap 3/4. Vaccination alone is not enough. The social consequences for persons with disabilities of a global emergency
- Mind the gap 4/4. A social twin track approach to vaccination
- Webblog of Joljin’s organisation( in dutch)
Words from the disability movement
Jolijn’s passion and drive marked everyone. Below, we shared the words of some of friends and colleagues. Your words about Jolijn can be sent to andre.felix@edf-feph.org.
Yannis Vardakastanis, EDF President, 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.
Vera Bonvalot, EDF’s Executive Committee member and representative of the Brain Injured and Families European Confederation , said:
I’m so, so sorry that you left this world. You made a difference here, you left a positive mark on every person who met you. If I already missed you at the last international meeting, now I will miss you even more. I learned a lot from you and laughed a lot with you. Contrary to what I sometimes fear you felt, you had a full and very useful life for this world that should have more people like you waking us up. big hug to the family.
Pierre Gyselinck, EDF Board Member and representative of Action Européen des Handicapés, said:
We will neither forget Jolijn’s colourful appearance nor her strong advocacy for persons with psycho-social disabilities.
Christina Wurzinger, EDF Board Member and representative of the Austrian Disability Council, said:
To me Jolijn was a source of inspiration and motivation – so often broadening the perspective of our discussions and giving new impetus to well known topics. Joljin always appeared to be full of energy and dedication. I will miss her and her in every way colourful personality a lot.
Albert Prévos, EDF Board member and representative of Conseil Français des Personnes Handicapées pour les affaires Européennes et internationally (CFHE) said:
How can we imagine our meetings without Jolijn’s interventions and attentive and kindly smiling presence? I am personally very grateful for all that Joljin taught me about mental health. But it was above all, Joljin’s own personality that caught our attention and made our contacts so pleasant, enriching and inspiring.