Our Ethical Framework
In Begripsam, we argue that society needs to change. Then we mean that something should be changed for the better. So, there is a direction in what we want to happen. It’s not always easy to know what makes something better or worse. When such uncertainty arises, it may be useful to lean on an ethical framework. Our ethical framework can help us make decisions. It can also show ourselves and others what we stand for. The basic thoughts of our work.
Act in the spirit of conviviality! Unless you have a good explanation for why a conflict is the best way, try to make people change with a friendly approach. Develop tools for conviviality.
Act in the spirit of solidarity. We’re all human beings. We are in this together. We can always do something to help each other. Act in solidarity and do not pity or ‘feel sorry for’. Avoid charity, but if someone is giving you a lot of money for a good purpose, consider accepting it (and refer to the point about pragmatism).
Be pragmatic about it! Take the steps forward which are possible at the moment. Do not be afraid to try something new. Do not be afraid of mistakes or breakdowns. Next time, do it better.
Work towards citizenship and democracy. Think along lines that will increase active participation in society and work as democratically as you can.
Do not design for diagnoses! Diagnoses are for medical research and interventions. In such areas, diagnoses provide precision. When designing, it is the understanding of functionality and impairments that provides precision. If people for example struggle with memory loss, the medical reason why is not that important to know in order to design something that can be used anyway.
Don’t be surprised when people have needs because of their difficulties. Why send letters to a homeless person? Why start a new medical exam of hearing if a deaf person says his assistive device is broken? Why not just give the person a new device or fix the broken one? Why charge a mentally ill person for not attending a meeting, why not contact the person and see how they are doing? Why demand that people with writing difficulties describe these problems in their own words, by writing a text? (All of the examples above are true stories.)
Do not patronise, do not treat groups of people as by default vulnerable. Think of participants with impairments or mental health issues and homeless people as equals, as co-operating partners or as co-researchers. It is another thing that some of them may need special arrangements to make cooperation work.
Emancipation and power relations. Think in directions that help people gain and take control of their own lives. Think in directions that empower people. Keep in mind possibilities to reduce various forms of oppression. Be aware of when and how you are in a position of power and what can be oppressive with what you do yourself.
Activate – Avoid disabling people, barring them from being involved and active: avoid functionality norms and ableism. Think in ways to support people’s development or the possibility to just live in the world as one is. Keep in mind the beauty of diversity. Consider the design challenges in designing something that everyone can use and enjoy. Don’t design just for the average person. Dare to collaborate with all potential users.
Moral or law? Do what is the right thing. What the law says is often a minimum level of requirement. Do not let the minimum compliance with the law prevail. Aim higher.
Think Participation and Activity and Inclusion will follow. Act to enable people to participate. We participate by acting. With activity comes inclusion. Think about inclusion as an outcome not as a beginning.
Think twice, it’s alright. Feedback is good. Reflection is good.
Save the world – but at the same time let it be sustainable and accessible. Respect that even in a sustainable society there will be people with impairments and health issues, though hopefully no homeless people (but as long as there are homeless people, you need to think about them as well).
Special solution or mainstream? Go for mainstream as often as possible. Common solutions can avoid stigma, are often cheaper and are probably easier to maintain over time. Just invest in solutions specifically designed for certain user groups, if you can justify why this will be better, when it is necessary. Also think of special solutions as interim solutions – as a way to inform the mainstream about a possible future. Many products and services have started as special solutions and then found their way to the mainstream.
Use guiding stars! The risk of ethical mistakes will be less if you can allow yourself to be guided by powerful ethical advisors. A guiding principle can be the UN convention on the Rights of Persons with Disabilities, CRPD; Universal Design; ISO 21801-1; or this list of ethical considerations… It is a good thing to have something to fall back on, to lead your thoughts in the right direction.
Ethical guidelines need to be an ongoing process. An initial description of ethical guidelines was presented by Mia Larsdotter and Stefan Johansson at the Nordic Network on Disability Research’s Conference, NNDR 2019. The initial version was approved as an ethical framework at the Begripsam Members’ Meeting in September 2019 and have also been published in translation in Stefan Johansson’s doctoral thesis Design for Participation and Inclusion will Follow: Disabled People and the Digital Society.
This version is a rework, and translation into English, made in May 2021