Researcher Juultje Holla and self-advocate Ellis Jongerius are examining how women who have experienced violence in institutions cope with the experience once they left the institution. The research is part of “Life after violence” project by Inclusion Europe.
Juultje and Ellis recently led a workshop presenting the research. We did an interview with Juultje.
What does inclusive research mean?
Inclusive research means doing research together in a team of trained researchers and people with intellectual disabilities. Ellis Jongerius is a brilliant trainer and self-advocate who I am lucky enough to work with. Together we presented our research to a very mixed group of people with intellectual disabilities and people who worked in institutions. It was only a small group, which allowed for plenty of time for discussion.
Can you tell us a bit about the research project?
Our research is about violence against women in institutions and how this impacts their lives. Many people think about violence as sexual and physical abuse. But most people with intellectual disabilities realize that there are many more forms of abuse, for example psychological and financial abuse, exploitation, neglect … and the list goes on.
How do you carry out your research?
Together with a number of self-advocates Ellis and I have made so-called discussion cards that show different types of abuse. The cards help finding out what women with intellectual disabilities themselves perceive as violence, and how this affects their lives.
How did the participants at the workshop react to your research?
The discussion cards reminded both women and men present of situations they had been in. Many of them wanted to speak out about some of the things that happened to them.
Some of the support persons present were shocked when realizing that they too had unknowingly caused harm to people. Additionally, they had not thought that people with intellectual disabilities would want to talk about the violence they had experienced, even more so with others present. Indeed, some of the participants had been told by their support staff (not those support persons present at the workshop) to forget about the abuse they had suffered from and simply “move on”. In contrast to the expectation that people with intellectual disabilities would be afraid to speak out, many of them said that recounting their experiences helped them. Taking part in the workshop therefore was an important experience and learning opportunity for the support persons.
What is the goal of this research?
We want to achieve a better understanding of what people themselves perceive as violence and how this affects them. Support persons want to make sure that the people they care for are safe and happy. Our research will support them to reach this goal.
Do you have any plans for the time after the end of the research project?
We want to make our discussion cards widely available and train self-advocates in institutions to lead the conversation about violence. This way we can enable everyone to talk about and understand the effects of violence in all its complex forms.
And they were very sad about this.
Some support persons did not think that people with an intellectual disability
want to talk about violence they experienced.
But the people with intellectual disabilities said
that it was important for them to talk about it.
This shows how important it is to have these workshops.
It helps everyone to understand each other better.
Question 5: What is the goal of this research?
Juultje answered that the goal is to learn more
about what people think of as violence and how it affects them.
The research will help support persons make sure
that the people they support are safe and happy.
Question 6: Do you have any plans
for after the end of the research project?
Juultje answered that they want to give the cards away
to anyone who needs them.
She said that Ellis and she want to train self-advocates in institutions
to talk about violence.
This way everyone can talk about violence and understand
what it can do.
Inclusion Europe also held a leadership training for self-advocates
and family members.
The leadership training was about violence against women
with intellectual disabilities.