My name is Jolijn Santegoeds, I came to be an advocate for the rights of persons with psycho-social disabilities through my own experience. When I was 16, I was institutionalized against my will because of a suicide attempt, put through many involuntary treatments, and spent a long time in solitary confinement, restrained, forcefully drugged, sexually degraded, and medically neglected. That is a very terrible story. Due to luck, I got out and I have seen that with really good support it is possible to overcome trouble. So, after all these experiences and having run away from psychiatry, I decided I should never accept what they did to me and what they do to others. When it started happening again with a young boy in an institution, I started protesting immediately, went to the institution and thought about public prosecution. However, I didn’t know how to do that, so I created handmade posters and glued them in the neighborhood of the institution in the streets as a public complaint. The next day, it was in the newspapers. This was around 2003. This is how I became an activist, and then came the idea of an informal protest group called Rage against Isolation!, a kind of anonymous group that put up posters. A couple of years later, we established a real foundation called Mind Rights (2006).
At that point, I had no idea about the CRPD. We were just trying to say that force needs to be absolutely prohibited because this has nothing to do with mental health care. When I discovered the UN’s CRPD, I saw that there was an upcoming World Network of Users and Survivors of Psychiatry Conference addressing this UN treaty. I thought this was interesting, so I managed to obtain the funding to get there and learn about the CRPD. The day after, I was elected to the World Network’s board. Now, I am also part of the European Network of (Ex-)Users and Survivors of Psychiatry. Three weeks ago, I was elected to the board of the European Disability Forum.
When I started, I just had a human view. I thought that what they had done to me was very unfair and I tried to convince people. When I found out about the CRPD and what it actually meant, that it gave us the right to not be locked up, it was very empowering. For the first time, powers that be recognized this was not fair. It was a great push, and it gave me very high hopes in the beginning. The ideas behind the Convention are mostly supportive for us as people. They mean that we don’t have to beg for rights, we can just claim them. That makes a big difference, and it feels like recognition. We, as Disabled People’s Organizations, especially the marginalized groups of people with intellectual disabilities and psychosocial disabilities, are seen as people that are incapable of making decisions and unreliable. We were discredited in everything we said and even now I still face the same struggles even after 10 years of the CRPD. It is really hard to be heard as a person with psychosocial disabilities. But, since the CRPD came into being, there are more places where we are heard. And the experience of being heard, it’s so precious, it’s so empowering.
The CRPD brought a big paradigm shift in mental health care. Before the CRPD, human rights were explained as throwing people into institutions, and even the World Health Organization was providing descriptions of procedures for locking people up in institutions. Especially in Europe and the US, the so-called developed world, they had built a lot of institutions, and it was believed that curing people by force was respectful of human rights. They said people lacked the insight, and in order to comfort themselves in the use of these old paradigm practices, they saw themselves as saviors. I found it really hard to convince people that it is not about taking over lives or deciding for someone in their « so-called » best interest. The best interest principle has been promoted so widely in mental health care and for intellectual disabilities that it is really a big challenge to counter that. It is more complicated for psycho-social disability and intellectual disability than for the physical disability. Indeed, for physical disability, some steps – albeit small – had been made and at least in the right direction before the CRPD (which was not the case for psycho-social disability and intellectual disability, quite the opposite). So, the direction needs to be changed and this is really complicated.
To me, the main challenges are to change the direction of development for psycho-social disabilities, countering the perceptions of professionals, including States. It is very complicated. For example, with their power, pharmaceutical industries lobby governments, and psychiatrists who operate from the old model too. These organizations and people have been in power, so they have recognition, and status. We as discredited people have to face this huge power imbalance. It is a massive struggle. It is good that the CRPD is building momentum and growing more mass, with more people on board – lots of people from within the disability movement, but also from outside the disability movement. However, the same prejudices still exist. The old paradigm is still deeply rooted and widespread. If I knew how to address it, I would have already done it of course! How can we find a way to reach people hearts? Generally, I start from my own experience and people understand that when you’re locked up you only feel worse, not better. This is the way to raise awareness. The CRPD language is a bit more abstract. I don’t know if that is good, but I think it is also very important to go to the grassroots level, and make it a language that people can understand. For me, the legal level is like an additional tool to use, but I prefer to approach things from the angle of human perception. For example, nurses do not speak the legal language, but they are the ones holding the keys. They have to change. The law is not necessarily a solution. My real goal is to change what happens in practice, and to support the development of alternatives.
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