Making inclusion a success
Future vision: unlimited participation
Roland Friele & Madelon Kroneman
Interview with Roland Friele & Madelon Kroneman
To achieve the transition to a future in which everyone with a chronic disease or lifelong disability can participate, we need to work together with disabled people. ‘People with disabilities are relatively invisible in society because of the many barriers they face’, says Madelon Kroneman, a researcher at Nivel and a patient with muscular dystrophy. ‘As a result, they participate less in society.’
Roland Friele, deputy director of Nivel and Professor of Social Science Aspects of Laws and Regulations in Health Care at Tilburg University, can only agree. ‘Madelon really sees things that I don’t see when it comes to the subject.’ With not only her professional work skills but also her experiential expertise shared from her wheelchair, Kroneman ensures that we look at the realisation of mission III from different sides of the quadruple helix.
Mission III: the goal and the means
‘The mission is not only the goal but also the means’, says Friele. The only way to ensure that people with a disability can go to a pub, for example, is to make it possible. Entrepreneurs often do not stop to think about practical matters such as a wheelchair-friendly entrance to a pub or store, while this would promote the participation of people with disabilities in society.
'Participation of people with disabilities in society really requires a change in thinking, increased awareness and action.', says Kroneman. It doesn’t have to be complicated: if you put a picture of your front door on a restaurant website, for example, then someone in a wheelchair knows whether they can enter. For many things it is simply a matter of knowing. That makes it much easier for people with a disability.
Utilise existing talent
An important part of participating in society is for example the labour market. ‘The Netherlands needs people who can make a contribution to society’, says Friele. What we are doing now is actually excluding a large group of people with disabilities. That is also a terrible shame in terms of the wealth and the diversity in society.
‘Participation raises many issues in which you actually have focal points in the whole society’, says Kroneman. Working promotes social contacts and brings earning capacity. ‘People have a bit more financial leeway and can do a few more things.’
Participation in the labour market also sparks a lot of follow-up questions: how do we make sure people get to their jobs? Is there a toilet for wheelchair users? What can someone do after work to relax? And how can an employer offer everyone the right work?
How do we ensure this shift in the labour market? What plays a major role is how people with a disability or chronic illness are viewed. ‘People with disabilities do not want to be pitied; they just face more challenges’, says Kroneman.
A newsreader, ministers, or members of parliament with a disability are rare, while this can play a big role in changing perceptions. When this becomes more visible, then in the future, it will be more natural for people with a disability or chronic illness to participate in our society. This way, everyone can see that they are also of added value in society.
A sneak peek of the future
2030: everyone can participate to the best of their ability and wishes
What will health & care look like in 2030, based on the five missions drawn up by the Dutch Ministry of Health, Welfare and Sport and published in the Health & Care coalition’s Knowledge and Innovation Agenda 2020-2023 ? This question is answered via inspiring and informative future images developed by experts, including Roland Friele and Madelon Kroneman. Participating according to one's wishes and abilities. In 2030, this will be possible better than ever, thanks to coherent innovations in society, healthcare and technology. The mechanisms that exclude people with chronic illnesses or lifelong disabilities will be systematically addressed.
This initiative is coordinated by Top Sector Life Sciences & Health (Health~Holland).
'By 2040, one in every three Dutch citizens will have two or more chronic health conditions. Every reason to focus on our mission of increased engagement in society with people living with a chronic illness. The COVID-19 pandemic means that we will just have to work even harder to achieve this goal.'
- Hans Schikan, Special Envoy for Vaccines at Dutch Ministry of Health, Welfare and Sport, and Top Team member of Top Sector LSH
'An inclusive society should be standard, but achieved with customisation. Such an approach is not obvious, but it is up for grabs. Therefore, it is often the exclusive solutions that lead to an inclusive society.'
- Martijn da Costa, Cluster Head Disabled and Chronically people at ZonMw
'Through our close collaboration with the SGF, we aim to make optimal use of PPP resources in order to bring application-oriented innovations to patients as quickly as possible. We do this through joint thematic programmes such as Immunology and Human Measuring Models in which collaboration between research organisations, companies and health funds is stimulated. I look forward to making an even greater contribution to Mission-Driven Top Sectors and Innovation Policy in the years ahead, with the SGF and others!'
- Laila el Aziz, Programme Manager Calls and Funding at Health~Holland
'Within RegMed XB, Dutch and Belgian public and private partners work together to develop regenerative medicine solutions. It is an enrichment for us as an SME to participate in RegMed XB, because it gives us access to HBO students. These students contribute to indispensable knowledge sharing in the various research processes.'
- Henriëtte Valster, CEO at HCM-Medical BV
'To achieve an inclusive society in which everyone can participate, we need to change our understanding of health. A paradigm shift is needed from a disease-based, biomedical focus on health towards a broader health-based, biopsychosocial focus to realise a sustainable healthcare system. In this paradigm shift, the PPP Health & Wellbeing focuses, with people’s living environment, on promoting health and a meaningful life for people of all ages with and without (chronic) diseases or lifelong health problems so they can participate in society according to their wishes and capabilities.'
- Gonda Stallinga, chair PPP Health & Wellbeing, senior researcher health studies, section nursing sciences University Medical Center Groningen