Jolijn was a disability rights advocate and a champion for persons with psychosocial disabilities and (ex)users and survivors of psychiatry. Jolijn was a board member of the European Disability Forum, of the European Network of (ex) Users and Survivors and co-chair of the World Network of Users and Survivors of Psychiatry (WNUSP).

Jolijn was active in many areas, from developing practical alternatives in mental health services to policymaking at national and European levels and providing expertise to international organisations such as the United Nations.

Jolijn was a sustainability engineer and user/survivor of psychiatry who faced a range of forced and degrading practices starting at 16 years old. The institution where Jolijn was placed put Jolijn in isolation and enforced coercive practices. After being transferred to another institution with more humane treatment, Jolijn’s condition suddenly improved. Jolijn started a protest group called Rage against Isolation! (Tekeertegen de isoleer!), which later became an NGO called Mind Rights.

In the context of the Dutch law reform on forced psychiatric interventions, Jolijn developed an alternative model called the “Eindhoven Model”, which is based on using Family Group Conferencing for supported decision-making to avoid forced psychiatric interventions.

Despite difficult personal situations, Jolijn was always active and present. Jolijn’s opinions and constructive inputs shaped the approach of many advocates to disability rights.

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.

We will always remember Jolijn’s kindness, sense of justice and commitment to support and fight for our rights.

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.

Jolijn’s passion marked everyone, and her words were always important. Below, we share an example:

“And I needed time. It’s tough to say that my entire ‘world view’ became affected, and I struggled with trust and faith. But eventually, I realized it was never about trusting others, it was within myself. And I thought about who I wanted to be.

And then it was clear that I know who I want to be and what I want to do, what I need to do.

For me, the only way to be at peace with so many efforts made, is to think I’m still going, so it has not been a waste. It is just a very long walk to change.

I have thought about letting go, and it actually made me feel worse, because I don’t want to be silenced. I don’t want them to kill my fire inside. I am nothing without my real feelings. I can’t bear the idea that they made me look away from it all, without remedying it. I have to speak to give a voice to those who cannot be heard because they are inside solitary confinement etc.

As a person, I feel better if I can stand up for my peers. It helps me to feel purpose, and to keep pushing for change, even when it’s extremely hard.”

Jolijn was a prolific blogger and writer for human rights. You can read some articles below:

• 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)

Below are some testimonials collected during Jolijn’s Celebration of life:

Stephanie Wooley: “To me, Jolijn truly represented the Rainbow, she was always – and still is – like a ray of light and hope that the rainbow represents to me every time I see one. She made me feel like we could be « One world, one people » and believe in our common humanity and that yes, our human rights could be respected. What an inspiration! May she be at peace and may the memory of her rainbow continue to span the planet and shine light and hope on all of us.”

Nadia Hadad:

“Dear Jolijn,  

I’m writing to you and about you, with a lot of pain,  

When I heard about your loss something paralysed my brain,  

A lot of people are sending nice testimonies,  

They all shared a lot of positive memories.  

For some people you were inspiring and other people were admiring your activism.  

Your Interventions had always deep impact,  

because as a self-advocate your testimonies were not an act.  

You wanted to change things and eliminate misery,  

that all survivors were fed-up flirting with poverty, 

forced treatment and isolation should become history.  

but what I really wanted to say Jolijn cannot fit in a refrain:  

So, from the bottom of my heart, I’m asking you to forgive me,  

I’m really so sorry,  

cause I was not there to hear or even read your last story!  

We failed as a community to caption the signals that you were sending,  

Taking it for granted that you had no big problems pending.  

Even when you were speaking about the barriers,  

We considered you as a winning warrior.  

Proud loud strong, and so colourfully visible,  

We really thought you were invincible.  

You Build up your life with so many principles,  

You took care of so many People who were invisible,  

Defending their basic human rights To become reality,  

Monitoring every violation and asking for a real penalty.  

But When you needed personalised support,  

the system failed to make even an individualized adequate report.  

We lost too many good activists,  

so it’s time to call loud out to all the reservists,  

To join forces and highlight the terrible consequences that persist,  

To remind our decision makers that these problems are real and exist,  

That the right to well-financed individualised support in the community is needed to resist,  

Jolijn & many others didn’t die to slow down and have fear,  

It’s now that we MUST stand up and say loud and clear,  

Stop violating ALL our basic human rights NOW and right here!”

Pirkko Mahlamäki: “Jolijn energy empowered me, her work and her fight inspired me when I was losing faith in the fight for human rights of persons with disabilities. We will go on remembering her and being strengthened by our fond memories of her.”

Loredana Dicsi: “My deepest condolences to all, because we have all lost a strong personality in our movement, but she remains with us in our hearts, minds within us because we will use her strength to continue her work, our work to ensure that forced treatment is not considered as care and that no one has to endure such treatment.”

Asylum Magazine: “We, as the members of the editorial collective, offer our deepest condolences to Jolijn’s family and friends. She made the world a better place. We are thankful for everything she has done. May her memory guide our future endeavors.”

Nina Portolan: “She was one of the guest lecturers in the first study session I attended and she was so open and warm to us all. Every time after that, if we would cross paths at an event, she would greet me with a hug and the warmest smile, telling me how amazing she thought I was. I admired her so much, and I was always deeply moved by her words. Even if I only had moments in time with her, I will never forget her impact.”

Maria Nyman: “I feel privileged to have met Jolijn and worked with her during my time at Mental Health Europe. I remember her as a person with a very good heart, really passionate, good to be around, constructive, solutions-oriented, fighting the good fight for human rights of and justice for people with psychosocial disabilities, uncompromising in terms of her convictions as she knew just how much was at stake. The whole blocking of the Additional Protocol of the Council of Europe’s Oviedo Convention would have been very difficult without her. Jolijn leaves a great legacy for us to take forward, striving for justice and rights. I also remember her strong commitment to disability rights in general, not least in her strive for the rights for people with intellectual disabilities.”

Bhargavi Davar – TCI:

“Jolijn was not so much a part of our global south led movement of TCI, she had her personal reservations about us. But we remember and respect her as among the bravest, most strident warriors and icon, standing up against what happens to many of us, when caught inside the mental health care system- psychiatric institutions, its professionals, the legal infrastructure, the physical infrastructure and its powerful power dynamic and political economy. Not many of our colleagues in the cross disability movement or in other human rights movements understand the reason why we see our peers as having ‘sacrificed’ their own lives, rather than having their life snuffed out by a so called health care system. Not many understand that this ‘health care system’ is like no other. In no other health care system is there complete nonconsensual, violent disrobing of personhood and taking away of all human rights, right upto the last breath.  She led the strongest and loudest personal battle against those experiences in her struggle against the care system.  Jolijn joins TCI’s very long list of our heroes, martyrs and leaders, past, present and future, who faced psychiatric oppression and went before it was their time. We honour Jolijn’s life, her individual struggles with the most horrible system on the planet and her death.”

Natalia Simon: “Jolijn, for me, was someone who had this uncompromising integrity.  She always stood strong on her convictions and she really had this amazing ability to convey clearly how mental health services could damage people. But also what really struck me with Jolijn is that she always came with concrete ideas and solutions about what could be put in place to change things and how people should be properly supported. I never had the opportunity to meet her outside of the work context, but what I do know is that because of her intelligence, her energy and her kindness, she was always this bright spark in the middle of meetings.”

Magda Biernat: “Jolijn was a constant source of light. And although she is no longer among us, she passed away being a great person, and her light will stay with us forever. The fight for human rights continues, and we, with Jojlin in our hearts, will continue it…”

Critical voices Ireland: “Jolijn, gave an enthralling keynote at the Critical Voices Conference in Cork a few years ago. Powerful, feisty and fragile at the same time, demonstrating the power of humanity in the most beautiful way. Sadly missed.”

Guadalupe Morales: “I learned so much from Jolijn! Her light and her rainbow accompanied her at every step. First, her look caught our attention, and immediately, her passion, determination and joy managed to flood everything. I am convinced that to be an activist and a leader like she was, it is necessary to be a good person. And may everything human be close to you. Organizations that lose sight of humanity, warmth and compassion are lost, and they lose us. They become very cold places that freeze sensitive souls, even though they seem hard as steel.

When the ends are confused with the needs of subsistence. When power locks in, and no longer listens. When an organization has as a priority to perpetuate and feed itself, it has lost its meaning. What she kindly called “the EU bureaucracy”.

She was ethics in the form of colors. If we do not get ethical principles to govern each of our actions, we will be adrift. The end never justifies the means!”

Andrea Parras shared Maya Angelou’s poem “When Great Trees Fall”

Kristijan Grdan: “I have met Jolijn more than a decade ago and in all this time I regarded her as one of the best human rights activists I´ve ever met.  As a victim of psychiatric abuse, Jolijn had a unique ability to use her personal experience as an advocacy tool in front of every audience, leaving a tremendous impact on the disability movement both in Europe and globally.

I had a privilege to advocate together with Jolijn against the draft additional protocol to the Oviedo Convention and will always remember the time we spent together sitting at the banks of the Rhine River in Strasbourg and strategizing our future actions.

The picture you are looking at was taken by Stephanie in 2017 in Madrid where we attended EDF General Assembly and as always had a great time together. The very same year I visited Jolijn in Eindhoven where she lived and got a more direct insight on everyday life this exceptional activist lived.

It must have not be easy for Jolijn to live her life in a contrast. One day she would be the prominent activist speaking to state delegations in United Nations or in the European Union and very second day she would get back into her life, dealing with poverty and lack of support, personally experiencing again exactly the very same circumstances she was fighting against. Reliving abuse she experienced every time when she shared it with different audiences, without any chance for recovery, was I believe one of the greatest burdens Jolijn was carrying on her shoulders.

Dear Jolijn, that coercion is not care I will always remember as your principle and I will gladly continue advocating for freedom, respect and self-determination of people with psychosocial disabilities in your memory and out of utmost respect.

Rest in power, my friend.”

Yoshikazu Ikehara: “Japanese colleagues, including Mari, she cannot be here today because of her serious illness, held conferences in Japan and South Korea, and lobbied at CRPD Committee, Cat Committee and Human Rights Committee with Jolijn.

She helped us and encouraged us so much whenever we worked with her. She protested inhumane psychiatry logically and passionately. She was tenacious but at the same time cheerful. We learned from her how to persuade and move committee members, government officials and the general public. She also taught us how to make our solidarity tighter. The CRPD is a powerful antidote against current inhumane psychiatry. She fought against current inhumane psychiatry using the CRPD as much as possible. Her statement was clear and logical. But when we enjoyed dinner after a hard meeting, she melted us with her lighthearted talk. I took this picture when we held a conference with South Korean colleagues including Ohyong here today. We cannot grieve over her death too deeply. We will never forget Jolijn and we promise her to take over her aim.”

Other words were shared before or after the memorial:

Yannis Vardakastanis: “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 Jolijn’s fight for the rights of persons with psychosocial disabilities.”

Vera Bonvalot: “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: “We will neither forget Jolijn’s colourful appearance nor her strong advocacy for persons with psycho-social disabilities.”

Christina Wurzinger: “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. Jolijn always appeared to be full of energy and dedication. I will miss her and her in every way colourful personality a lot.”

Albert Prévos : “How can we imagine our meetings without Jolijn’s interventions and attentive and kindly smiling presence? I am personally very grateful for all that Jolijn taught me about mental health. But it was above all, Jolijn’s own personality that caught our attention and made our contacts so pleasant, enriching and inspiring.”

Michelle Funk: “So sad to lose Jolijn who ended her life too early. I, and so many others, had such deep admiration for Jolijn. She was a force standing out from the crowd, she was passionate, insightful and articulate about the human rights challenges that  must be overcome in mental health care. Jolijn brought so much depth and meaning to all of the World Health Organization’s “Quality Rights” work.  I appreciated  whenever Jolijn spoke and wrote and every interaction we had.”

Mary Nettle: “Jolijn was the most inspiring person and I was so sorry to hear she had died when she was such a survivor. I loved her statement hair style and her ability to communicate. I will miss her impact on the mental health world. We must continue

Jasna Russo: “Dear Jolijn

even though you can’t hear this, I need to address you directly because this is something I never told you and I wish I had: I always admired your easiness with people, your warmth and most of all – your non-judgmental ways. You clearly channelled your anger towards the mental health system and never directed it to your peers. This is something to remember and learn from.

I will never forget your support and solidarity at one difficult WHO event in Lille back in 2014 when I was treated really badly by the organizer: they invited me and gave me a time slot to speak, and then just before the panel was about to start – I was told that I am not supposed to contribute what I prepared. Instead, I was given one working group report to read. I was about to withdraw when I turned to you in desperation, but you were immediately ready for action. This nightmare then turned into something totally different. We presented together and had such fun subverting that panel, which can also be seen in this picture.

Jolijn, I want to remember you like this, but the thought of you being all by yourself and none of us around for YOU to turn to – will always overshadow this memory.

Keep shining you, strong and you, vulnerable lady, and we here – we will have to learn to do better.”

A memorial celebration of life was hosted online on the 31 May. While it was not recorded due to privacy concerns, we share below some photos and videos.

Several people shared their words about Jolijn. While we cannot share the full list some people sharing their memories of Jolijn included Stephanie Wooley, Jan Berndsen, Liz Bronson, Sean Crudden, Bhargavi Davar, Mette Ellingsdallen, Kristjan Grdan, Nadia Hadad, Olga Galina, Yoshi Ikehara, Tina Minkowitz, Guadalupe Morales, Catherine Naughton, Ana Pelaez, Gabor Petri, Jasna Russo, Yanns Vardakastanis.

Advocates from the European Network of (ex)users and survivors of psychiatry provided beautiful photos:

• Find the photos of Jolijn in the Flickr gallery (external website)