What is day-to-day life like for people with profound intellectual and multiple disabilities who live in group homes? How do they express their desires and wishes? How do care workers think about them and treat them? Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and moral affirmation?
Narrowed Lives is an illuminating portrait of what life is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live their lives. It documents how care workers strive to guarantee individuality and dignity against a backdrop of scarce resources and misguided policies. The book is a sobering account of how the lives of people with profound intellectual and multiple disabilities are restricted, not primarily because of their impairments, but, rather because well-meaning intentions do not always work out that way in practice.
Simo Vehmas is professor at the Department of Special Education at Stockholm University. He wrote the book together with Dr Reetta Mietola, Department of Cultures at University of Helsinki. The book also includes a philosophically oriented appendix which Simo Vehmas co-wrote with Dr Benjamin L. Curtis, senior lecturer of philosophy at Nottingham Trent University.
We asked Simo Vehmas a few questions to give you a little bit of a background of the book project.
Why was it important to write this book?
Because views about people with very limited cognitive and communicative capacities are too often based on prejudices. This becomes clear, for example, in the philosophical debates on moral status where people with profound intellectual disability are depicted as animal-like without any real knowledge about them as individuals, or any appeal to empirical evidence.
How do you define profound intellectual and multiple disabilities (PIMD)?
PIMD is a diagnostic category that refers to people who need constant help with just about everything: they have very limited capacities to understand instructions, they are incapable of expressing themselves verbally, they are incapable of taking care of their basic needs, and they often have other health conditions such as epilepsy. It needs to be remembered, however, that the term PIMD tells very little about people to whom it is applied as individual human beings.
In the light of empirical data, what makes a good life for people with PIMD?
A life that ‘looks like them’, as the official disability policy in Finland states, would be a good start. This would require a commitment and effort to find out each individual’s wants and wishes, to understand and respect their individuality. Too often, people with PIMD are treated as a group rather than as individuals.
As the people involved in the study cannot communicate with you verbally, can you tell us about the method you used?
We first talked to their care workers and families. After that, it was mostly a matter of observing our research participants, trying to make sense of their communication and engaging in interaction with them. Interpretation of their communication was one main challenge throughout the field work, especially in the beginning; how do we know what they say or know? This was unsurprising considering that even their family members and care workers, who had worked with them for years, were regularly confused by their communication.
One of the caregivers who was interviewed in this book used the expression “narrow lives” when explaining the lack of engagement and effort to make the lives of persons with PIMD more active and meaningful. How are their lives being narrowed, and why?
In short, their wishes and desires regarding, for example, sociability remained unfulfilled either because of scarce resources or because of care culture in which the threshold for an acceptable standard of living meant keeping the residents fed and clean. Everything beyond that was optional.
Were you surprised by anything that you came across in your research?
Regardless of the various difficulties related to the interpretation of the communication of persons with PIMD, we were surprised how much we were actually able to understand them. Communication barriers did not prevent meaningful reciprocity.
How to access this book
You can download the book for free as an ePub or PDF-file or read the book online. Our books are accessible on multiple devices. You may also find ways to order a print copy of the book through the Stockholm University Press website. The book is licensed with a Creative Commons Attribution 4.0 license.
How to cite this book
Vehmas, S. and Mietola, R. 2021. Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability. Stockholm: Stockholm University Press. DOI: https://doi.org/10.16993/bbl.