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.
Find out more about the “Life after violence” project on its dedicated website.
Inclusion Europe also held a leadership training for self-advocates and family members on the topic of violence against women with intellectual disabilities. Read more in this article.
Click on a word which is in bold to read what it means.
Juultje Holla is a researcher.
Together, they are doing a research project.
Their research is about women with intellectual disabilities
who lived in institutions
and who suffered violence in these institutions.
Juultje and Ellis want to find out
how the experience affects the women’s lives.
We did an interview with Juultje.
Question 1: What does Inclusive research mean?
Juultje answered that Inclusive research means
doing research together in a team of researchers
and people with intellectual disabilities.
Juultje talked about Ellis Jongerius.
She said that she is very happy to work with Ellis.
Juultje told how she and Ellis presented their research.
They presented their research to a group of people.
These people were very different.
There were people with intellectual disabilities
and people who worked in institutions.
Juultje said it was a small group.
This was good because there was lots of time to talk.
Question 2: Can you tell us a bit about the research project?
Juultje answered that the research is about violence against women
in institutions and how it affects their lives.
There are lots of different types of violence.
- when someone shouts at you
- when someone forces you to do things you do not want to do
- when someone doesn’t take proper care of you
Question 3: How do you do your research?
Juultje answered that she and Ellis and some other self-advocates
have made cards.
These cards show the different types of abuse and violence.
They use these cards to find out what women
with intellectual disabilities think of as violence.
They also use these card to find out how this violence
affects women with intellectual disabilities.
Question 4: How did the participants at the workshop
react to your research?
Juultje answered that the cards reminded a lot of people
what had happened to them.
They wanted to share their story.
The cards also made some people realize that they had actually
hurt other people.
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.
You can read more about the Life after violence project by clicking here.
Inclusion Europe also held a leadership training for self-advocates
and family members.
The leadership training was about violence against women
with intellectual disabilities.
You can read more about it in this article.[:]
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
Become Inclusion Europe supporter and help us keep doing our work.