To adapt to disability, the community needs to change, not the child
By Louise Kinross
In Unraveling: Remaking Personhood in a Neurodiverse Age, Matthew Wolf-Meyer looks at how we came to see the brain as the centre of a person, and how this marginalizes people with brain-based disabilities and results in attempts to fix the individual rather than change the environment around them. "Neurological disorders share a central symptom," Wolf-Meyer writes, "the apparent lack of being able to communicate in an untroubled and transparent way." Drawing on cases of children with conditions like autism and aphasia that interfere with the ability to speak, Wolf-Meyer illustrates how these "disorders unravel the orderly expectations of society, troubling ideas about subjectivity and personhood." Wolf-Meyer is a senior research fellow at Tampere University's Institute for Advanced Study in Finland.
BLOOM: Why do we tend to reduce our sense of someone's personhood to their brain?
Matthew Wolf-Meyer: Cross-culturally, coming from an anthropological perspective, it's not always the case that brains are the locus of the self. If you look at other societies around the world, they place personhood in different geographies of the body.
So for a long time in Japan the heart was the centre of personhood. A lot of work has been done on organ transplantation in Japan, and they've found that even though there are a lot of viable organ donors, people don't want their family members to be used as donors as long as their heart is beating because they see the heart as being the centre of the person.
In the Western Judeo-Christian tradition, for a long time the spirit was the location of personhood.
Over the 19th century, with the rise of anatomy and its relationship with medicine, we start to see the brain take the place of being where the person lies. There are famous cases of brain injuries in the 19th century that people used to make arguments that a person had changed because their brain had changed.
Over the course of the 20th century, neuroscience and psychiatry lead the charge on making the brain the centre of the person. By the end of the 20th century and the rise of modern pharmaceuticals, we really accept that the brain and its material structure and chemicals are what drive a lot of our behaviours. The idea is that if we can just act on the brain, with a drug or a gene therapy, we can change people's behaviours. People don't look at the social factors that influence people's lives.
When talking about personhood, one of the things people seem to continue to rely on is the idea of the speaking subject—that everyone is able to express themselves in unproblematic ways. Speech is the way we know that people have complex inner lives, with the assumption being that if you don't speak, there's no depth to you as a person.
When you look at people's actual lives with various communication impairments, it becomes obvious that even if people can't speak in 'normal' ways, they're often able to communicate with other people, and have deep, rich inner lives.
BLOOM: How does tying personhood to a certain kind of brain impact people with brain-based disabilities?
Matthew Wolf-Meyer: In the U.S. context, and to a degree in Canada too, we really think about disability as lying in individual bodies. A lot of people who actually have disabled family members can demonstrate that if you change the structure that a person exists within, capacities that that person exhibits can change too.
Because we're so focused on the material body of individuals, and thinking that pharmaceuticals and gene therapy and prosthetics can fix it whatever is abnormal, we don't experiment with changing the social context people are in to facilitate them developing in different ways.
For example, I have a kid who has issues with motor planning. That means that functionally he has a problem eating certain things. If the only things we fed him were the things that he has the hardest time eating, he would be an impaired eater and that would have all kinds of downstream effects—he would be choking and he wouldn't get the nutrients he needs. In that situation he's hopelessly disabled, and we blame him because we don't accommodate to the capacities that he has. But what if we change the situation so what he's eating are the things that are the easiest for him?
In one chapter of the book I talk about an experimental community in France called La Borde where they care for people who have a variety of neurological disorders. They start with the assumption that everyone has the ability to do all sorts of stuff, and you have to figure out what stuff everyone can do. By doing that, you're really including people in society and not holding their disability again them.
Parents and health-care providers are so stuck on these norms about communication and physical abilities that it becomes a problem of trying to get your child to meet the norms instead of changing the norms to be more accommodating. We need to have a more expansive view of what's normal that allows more kids and their families to exist outside of the medicalization of disability.
BLOOM: How do we get away from our focus on the 'normal' brain?
Matthew Wolf-Meyer: I don't have an easy answer for that. On some level it's recognizing that we all depend on all sorts of structures in our everyday lives that facilitate our feeling normal. We've built the world in a way that supports people who are a particular size and a particular cognitive style. We need a more expansive palette of possibilities that allows more people to benefit from having that experience of feeling normal. We need to widen the continuum of normalcy.
BLOOM: I hate the concept of normal, because no matter how wide it is, there's always someone on the other side.
Matthew Wolf-Meyer: In a way normalcy is really confining, and we need to find ways to think beyond whatever the normal is.
BLOOM: You talk about how neurological disorders disrupt our ideology of independence. Can you explain?
Matthew Wolf-Meyer: One of the things we've bought into, especially in the U.S., is the idea of the independent person. What we're all shooting for is to have little kids who will grow up to be independent adults, and they're going to raise their own kids who will be independent adults. But we accept that at the beginning of life and at the end of life people are dependent on other people for care.
What we ignore is the interdependency we have, throughout our lives, on other people who support us. Even when we think about ourselves as being independent, we're actually dependent on others in all sorts of straightforward ways for our emotional care and financial care and material care.
Neurological disorders may put people in a situation where they need intensive care throughout their lives, but when we think about it as being intensive, it's just thinking about it on a spectrum of the care that everyone needs. For example, I do all sorts of things for my partner and she does all sorts of things for me, and we don't really make them as being about interdependence most of the time. But if I'm gone for a week, there are real hardships that both of us face in the absence of the other person.
BLOOM: The idea of independence is a myth really.
Matthew Wolf-Meyer: For a long time, people in disability studies have been saying that you have to begin with the idea that people are interdependent, that nobody is on their own—that's the only way to dislodge ideas about independent individuals.
BLOOM: It's odd that we're fine thinking that we need help as young children and older adults, but it's stigmatized in middle life.
Matthew Wolf-Meyer: Not to be a conspiratorial Marxist, but it has a lot to do with capitalism. Talk about independence is about creating individuals who are going to get jobs and produce in society. And everything from our education system to our employment system is focused on individual skill and attainment. If something goes wrong for someone we blame the individual, we don't tend to think about the system that the individual is in.
The bigger argument to make is to think about how we can reorganize society to facilitate more people being included. One of the challenges is that we look at things case by case. We think about what we can do to help this one child be mainstreamed in school, whereas I'm thinking about how we could reorganize the whole school in order to catch and support way more kids.
My son Iggy is in first grade and we had to advocate to get him a helper in his classroom. That's because there are 15 kids in the class and one teacher. He can't both hold a piece of paper and cut it with his other hand, but if someone holds the paper, he can cut it. He needs help eating and doing other things that most typical first graders are going to be okay with.
But we're wedded to this idea that classrooms are a certain size and need to have a certain teacher-student ratio in order to support certain ideas about individual attainment. And that means that certain kids are going to be recognized as being disabled, rather than being a member of the community with a set of skills and they just need support to do the stuff they're doing.
BLOOM: In your book, you write about a 'nervous system' that can support atypical ways of communicating or being in the world. What does that mean?
Matthew Wolf-Meyer: It's an attempt to take what we think of as being isolated in our bodies and push it outside. Instead of thinking about how disability and individual capacity and what's normal reside in an individual, what about how everything outside an individual facilitates that person's interactions with society?
So let's take the idea of a nervous system as being contained within our bodies, and think that maybe it extends out of us as the connective tissue between inside and outside. Then we can start to think about changing parts of the nervous system to change the way we think about individuals.
How do you educate a classroom community so that they don't tease this kid but help them be a member of the community? What is it going to take? The metaphor of the nervous system is an effort to get people to think beyond the boundary of the body. Let's think more environmentally about what makes a person into an individual. How do we include more people in that community and make inclusion a community project?
BLOOM: I loved your chapter that included the Suskind family, who found a way to communicate with their autistic son Owen through his love of Disney films and characters. Sometimes there's a lot of pressure on parents, as children grow, to make sure they're doing 'age-appropriate' activities. I know in Owen's case his passion for Disney continued into his adulthood and he even has a group of adults with disabilities who meet to share the same interest. It struck me that if these parents had bought into stamping out something they considered 'childish,' they never would have developed a rich relationship with their son.
Matthew Wolf-Meyer: They're such a good example of a family that just goes with the flow. They see that Owen has a particular interest and they follow that interest and over time it flourishes into something that they had no way to anticipate. Their willingness to go with it totally changes who Owen becomes and their family, too.
BLOOM: It makes me think about how for some families it is more difficult to follow their child's interest if it doesn't conform to norms. What would you hope professionals who work with children with disabilities take from the book?
Matthew Wolf-Meyer: I tried to come up with language that helps us think about what we do when we do care work. I use the word 'facilitate' a lot, in order to convey that. What we're doing for people when we're caring for them is facilitating them to do something. It's not just that we're caring for a passive person. Facilitating someone to do something could be as straightforward as eating or communicating, but it can also be more complicated. We're doing something with someone, not just for someone.
One of the other words I use is 'animation,' and the Suskinds are the example of that. It's thinking about what moves people, and in that movement, how do people become connected? What the Suskinds are doing with one another is finding a way to animate each other through a shared interest and project. And that has a knock-on effect of facilitating Owen's communication with everyone in their family and with other kids and adults in his world. It's about finding something that is mutually animating.
BLOOM: But that doesn't have to fit within cultural norms does it?
Matthew Wolf-Meyer: No, it can be different than what our normative expectations of a person are and the outcomes we're being told we should look for. It's about creating an inclusive situation and it's necessarily going to be different for every kid and every family.
BLOOM: How did you get interested in disability?
Matthew Wolf-Meyer: My first book was about sleep disorders, some of which would be treated as disabilities, like narcolepsy. In a lot of ways, disability has always been something that's been part of my scholarship. In an earlier version of Unraveling, I talked about growing up with a close friend who had a younger sister who is disabled. So disability was something I was always aware of. Then I dealt with my dad's aging and dementia at the same time we were dealing with child-raising. That led me to think about the category of what it means to be normal and to want to challenge that. If Unraveling helps other people do that too, I'll consider it a success.
Like this interview? Scroll to the blue banner at the bottom of the page and sign up for our monthly BLOOM e-letter. It includes our latest stories, links to mainstream disability news, shout-outs to people making the world more inclusive, and new books.
