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“In this way, we open each other’s eyes and you can have a broader look”

First experts-by-experience get a job at Tranzo’s Academic Collaborative Center “Living with an Intellectual Disability”

Meet Kim Beenhakker and Mireille de Beer. They applied at Tranzo’s Academic Collaborative Center “Living with an Intellectual Disability” (AWVB), at Tilburg University, by means of a video and have subsequently been warmly welcomed as co-researchers with lived experience. “It feels like a warm blanket,” says Mireille, “we are equals as colleagues here.” Kim: “That almost never happens.”

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So how come it did happen? As part of their jobs at the AWVB, for 12 hours a week, Kim and Mireille bring in the very valuable knowledge of their experience. To develop knowledge that is important for both academia and practical care, the researchers of the Academic Collaborative Center do not only need academic knowledge, but also professional knowledge and the knowledge that comes with experience. In the AWVB’s research, all three sources of knowledge are essential. The result: a working relationship based on equality in doing research together.”

This collaboration on an equal footing emerged from the vision of Professor Petri Embregts, the program leader of Tranzo’s Academic Collaborative Center on Living with an Intellectual Disability. This Academic Collaborative Center is a long-term collaboration of fourteen care organizations for people with an intellectual disability, national client organization LFB, and Tilburg University. In the Collaborative Center, researchers and science practitioners (professionals who work partly in the field and partly within the university) conduct research together, bridging the gap between science and practice. Together they focus on the question of how the care of people with an intellectual disability can be improved, for instance, by supporting these people to make their own choices and to take control of their lives together with the people who are important to them.

Connecting sources of knowledge

“Ever since the AWVB was set up, approximately eight years ago now, we have worked from the vision that our research should be conducted for and together with people with an intellectual disability,” Petri says. The knowledge of people with an intellectual disability, their families, and the professionals is invaluable here. However, this knowledge is not on paper but mainly in the heads of these people. Petri: “Therefore, I find it very important to listen to people in the day-to-day practice, to monitor what they do, to ask them for their professional knowledge, and to connect it to our research. What is important in their view? What are the gaps in our knowledge? We soon realized that the knowledge of the experience of the people with an intellectual disability itself should be central. Our aim is to connect these three sources of knowledge, that are equally important.”

Embregts takes a piece of paper to make a drawing of how she connects these sources of knowledge. Three circles overlap in one point. That is the focal point. “The more we can connect the knowledge of researchers, professionals, and experts-by-experience, the better the research results will link up with the professional practice and in professional training programs. New knowledge can actually ‘land’. With a common goal, we can make a meaningful contribution to the wellbeing of people with an intellectual disability and their families.”

With the Academic Collaborative Center, collaboration projects are regularly carried out with people with an intellectual disability who are experts-by-experience. To structurally embed the exchange of knowledge, two very motivated new employees with a wealth of experience knowledge started as co-researchers a few months ago. They were recruited by Tilburg University under the Dutch Participation Act to conduct activities for Tranzo’s AWVB.

Equality

“What I would like to contribute to is that care supporters communicate better with people with an intellectual disability," Kim explains about her decision to apply for a job at Tilburg University. That's already changing, but still it often goes wrong – even if it isn’t on purpose, according to Kim. "Many people cannot stand up for themselves because, for example, they cannot talk. I can do that. I really want to do something about better understanding between professionals and clients; and this is a place where I can do that.”

Petri wholeheartedly agrees: “Academic research is often aimed at the evidence of support, its effectiveness, rather than on the relationship and the extent of the equality that people with an intellectual disability experience in relation to their carers.” That is exactly what it is all about: together focusing on what is really important.

”I think it is important that you can develop something new and that research results are used in practice,” Mireille adds. “People treat you differently because you have a disability, but I am more than my disability. You can quickly become stigmatized, although I see that that is changing. It also matters what attitude you adopt. I am always very open.”

Good practices

One of Kim and Mireille’s tasks within the Academic Collaborative Center is collecting and introducing knowledge and experience on positive and special experiences. “We will be trying to highlight the positive things, to discover why they work well,” Petri continues. “We will share those good practices with professionals working in care.”

It will take a while to decide how Kim and Mireille will be tackling the knowledge dialog and what topics they will be starting with, but Petri is confident. Knowledge manager Luciënne Heerkens of the Academic Collaborative Center “Living with an Intellectual Disability” will be available as a coach to help the new researchers on their way and, whenever necessary, to offer a sympathetic ear. Petri: “I am touched by the power of people with an intellectual disability, the power to strive for an equal place in society. Kim and Mireille bolster my intrinsic motivation: I want to do research of which people with an intellectual disability will say that it is truly valuable.”

The new co-researchers have now completed an introductory program and have spoken at length with the other researchers of the Academic Collaborative Center. “I have discovered that I do not only give them something, but that they also give to me,” says Mireille. Kim has even changed her view of her own carers. “I realize now that they also come up against barriers. In this way, we can open each other’s eyes and you can have a broader look.”