Reetta Mietola works as a research fellow at the University of Helsinki, Finland. She is currently directing a four-year research project on Finnish disability activism.
Simo Vehmas is a professor of special education at Stockholm University, Sweden, and a visiting professor at Høgskolen i Innlandet, in Lillehammer, Norway.
Reetta Mietola and Simo Vehmas wrote a book called ‘Narrowed Lives. Meaning, Moral Value, and Profound Intellectual Disability’published in 2021 by Stockholm University Press.
The book showcases what life is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live.
It is based on a lot of interviews and observations of people with profound intellectual and multiple disabilities.
In this episode we talked about:
[02:33] Who is the book for?
Reetta Mietola and Simo Vehmas wrote the book mainly for academics but also for policy and decision makers. They tried to simplify as much as possible the technical aspects of the issue.
[05:39] What has the book found about the issue and the people studied?
The authors conducted the research via empirical findings via interviews and observations of people with these disabilities in homes and, theoretical issues related to the practice and humanity.
One major finding of the book is that people with profound intellectual and multiple disabilities have a “stagnant life”, because of the way they are being treated.
Also, the book reflects on what is good life for people with these disabilities.
[08:43] People with profound intellectual and multiple disabilities lack social relations
Reetta Mietola explained that they are not well understood and are seen as un-able to do things.
Especially, to have friends or to understand human relations.
The book shows this is not true.
[13:16] How has the care for people with profound intellectual and multiple disabilities positively changed?
Simo Vehmas highlighted how support services reflect values of the times.
The culture in some countries has changed to a more human rights based mindset, and services reflect that too.
[17:03] What is the expectation versus reality gap?
Reetta Mietola said that carers and other professionals do not have a good idea on how to work with people with profound intellectual and multiple disabilities.
[21:08] It is harder in practice than in theory.
Reetta Mietola highlighted that there is a need to have another type of training available for people working with people with profound intellectual and multiple disabilities.
“It was more about like the nurse skills that were in use rather than skills or thinking around how would you put disability rights into action in everyday lives?”
[23:20] A need to shift the focus on social relations.
Reetta Mietola explained that carers do not have much power to change it. The culture has to change so as the resources and the management of the care homes.
[24:59] People with profound intellectual and multiple disabilities are socially isolated.
The authors said that care culture is not improved nor enhanced because it is not at the top of the priorities. The care work is focused on basic needs (feeding, washing) rather than social life.
[02:33] The group element is the issue.
Homes have a variety of people with disabilities, some have milder disabilities than others.
The carers should provide individual care to each person rather than caring for them in the same way.
[35:29] What is one key lesson that people should take from the book?
Simo Vehmas’ key lesson is to challenge people.
“One of the central aims of this book is to try to challenge people to confront their own prejudices, their own thinking, and to force them to engaged with some very difficult, complicated, and even unpleasant issues such as sexuality or moral worth or competence, for instance.”
Reetta Mietola’s key lesson is not to forget about the issue when change happens, but to keep working on the issue.
- The book Narrowed lives can be downloaded for free here.
- Listen also to a conversation about quality of life and quality of support services.
- Read about support to people with complex support needs.
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