Wednesday, November 21, 2012

One humanity, one voice

Being different is isolating, but if we join with others who are perceived as undesirable we find community and a powerful voice for social change, says Andrew Solomon, author of Far From The Tree, at a talk at the Toronto Reference Library yesterday.

"It's important to establish the commonality of difference," Solomon says, speaking of his new book that explores families of children who appear "alien" to their parents because they have conditions like Down syndrome, dwarfism, deafness and schizophrenia, or are transgender, child prodigies or conceived in rape.

"It's all one battle," Solomon says. "If you take every [person] who experiences themselves as somehow different from the mainstream, that's more people than in the mainstream. All of us should be addressing the questions and advocating together for a more just world."

Solomon is referring to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community -- and how it fractures all of our attempts to achieve equality as humans.

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

Solomon admits that before writing the book he was "somewhat afraid or uncomfortable" with the groups of people he'd be interviewing. "Then I got to know people and hear the stories of people and I felt a glowing humanity...The experience of habit makes these syndromes different from how one imagines them from the outside."

Solomon first became interested in writing about parents whose children appear to be unlovable when he wrote Defiantly Deaf for the New York Times Magazine. In researching the piece, he realized that his experience growing up gay with straight parents had parallels to what it felt like to be a deaf youth living with hearing parents. "I saw people who were deaf didn't experience it as 'lacking hearing' but as having membership in a good and valid culture" centred around sign language, Solomon said. "I became interested in the tension between the ideas of illness and identity.

Solomon contrasts how being gay in the 1970s was perceived as an illness and criminal act while his life today as a husband with children is seen as an identity. "I thought if people can make that switch from illness to identity, then where else is [that change] possible?"

Solomon's book focuses on what he calls horizontal identities -- "when a child is a member of a culture with which the parents have no previous experience and needs to learn identity from a new peer group." In contrast, vertical identities are traits that are passed down generationally, like race and language.

Horizontal identities are central to a person, Solomon says. "They are inherent to someone's whole personality and you can't cordon them off," as some parents attempt to do -- refusing to allow a deaf person to sign, for example, trying to turn a gay child straight, or insisting that a child with dwarfism have their arm and leg bones broken in a dozen places, and stretched in a painful, even "barbaric" he says, procedure.

"When parents say 'I wish my child didn't have autism,' what they're really saying is 'I wish the autistic child I have did not exist, and I had a different, (non-autistic) child instead," is how a man with autism describes it to Solomon. "...This is what we hear when you pray for a cure...that one day we will cease to be, and strangers you can love will move in behind our faces."

Solomon notes that at a time when life for people with Down syndrome is better than it's ever been -- "they live longer, have more intellectual accomplishments, function better and have greater education opportunities" they are at risk of being eradicated through prenatal testing and termination. He doesn't argue against prenatal testing but believes "a lot of the decisions are made from a standpoint of ignorance." He admits that his decisions on such matters would have been different before his indepth exposure to people with disabilities.

He stresses that cultural perceptions about what's a disability and what's an identity are fluid. "These things change. What seems today to be a disability 10 years from now might not be seen as a disability."

Social progress in how we view difference is as important as medical progress, he says. With the advent of "designer children" he hopes that "social mores will also progress, so that when we're given more choice, we won't all make the same choice." He calls for an "opening or expanding of our idea of normality."

Solomon says institutional and home care should be options for families and we have to recognize that while some families are suited to heavy caregiving, others are "barely holding on."

Typically the interests of non-disabled siblings are put first in decisions about where the disabled child lives. For many years, he says, it was standard practice to send disabled children to a home "in order to ensure siblings didn't have attention taken away from them." Now standard practice is that it's better for siblings to keep the disabled child at home so they don't later in life blame themselves for being the cause of the child's abandonment. But in either case "the focus is on the siblings and their mental health" Solomon says, rather than on the child with disability.

Parents with a lot of privilege in life tend to be perfectionistic and it was in these families where he saw the strongest attempts to "fix" the child, he says. In contrast, in families that didn't have the means to invest in intensive rehab programs, parents were more accepting of the child's differences.

He notes that while the siblings he met sometimes experienced their brother's or sister's care as draining, or felt parents were preoccupied with it, they loved their sibling deeply and did not wish that the child didn't exist. He came to the conclusion that the disability experience made siblings "more humane and kinder."

He encourages people to describe those with differences in a way that respects, rather than denigrates, while noting that we often become ludicrously rigid about language and intention is most important.

Solomon says that human diversity is what makes the world rich and is as important as diversity in animals or flora.

"Even when everything went wrong, people find meaning in the experience of being parents," he says. "This is not a Hallmark card and I'm not suggesting we go around saying 'What a shame that child isn't disabled.' But, as in looking at depression, it's possible to look deep into difficulty to find meaning and it's possible to grow. These are challenging and shocking experiences that call on people to undergo a profound transformation."

Andrew Solomon won a national book award for The Noonday Demon, An Atlas of Depression in 2001.


Hi Louise, thanks for this piece. The book's length is a bit daunting, so I appreciate your commentary as I read it!

I agree, in the disability or 'different' communities, together we are stronger. I found that when my son was young, the 'Down syndrome' piece was very crucial, but as Aaron has gotten older, and is in school, I have more in common with other families who are living with disability than I do differences.

So why can't we do family support together? And for advocacy work, numbers are important...together we are stronger.

Sounds like a fascinating book, Louise - with a fascinating author. Thanks for sharing all this wonderful information.

This is wonderful, I'm thrilled by this tack for our family movement. I'm reading Solomon's book now and it's fascinating. Reminds me of something that my sister once said about her own children being so different from each other: "You throw out a few seeds and you never know if you get a carrot or a beet". I hope that our parent movement can align with seniors, with childcare, with various conditions and illnesses, with any group or entity that represents 'otherness', especially otherness that entails dependency. Thank you so much for this thoughtful and insightful post.

Really interesting thoughts and commentary, but as I read through them I found myself bristling a little as a special needs mom and I find that personal reaction curious.

While I understand the 'place' he is coming from with his commentary. I am not sure I agree with it all. I may be confouding his ideas with the fact that we have and ongoing and serious medical story as well.

I don't think it is wrong to wish your child's disabilities away and to hurt for them at the challenges they will face in their lives.

I think you can feel both, the sadness and also the strength to do the best we can for our children and help them navigate this world in the best possible way.

Hi Julie -- If you read the book it captures well the co-existence of immense joy and immense pain in parents and the complexity of the experience. I think you would really enjoy it -- the disability chapter includes a section on parents of kids with severe disabilities and complex medical problems. Thanks for writing!

I was already looking forward to reading this book on your recommendation, and now I'm REALLY looking forward to it. There is strength in numbers. Despite our diversity of experiences we all share a common human experience. It's up to us to define what this experience is and help shape the world that allows us to live our lives. Humanity, equality and shared respect are wonderful ideals for anyone.

Julie -- I didn't realize it was "you" -- The book doesn't suggest in any way that there's inherent value in physical pain or suffering --what your daughter is going through is totally unjust and unbearable and of course you would do everything in your power to take her pain away. I hope you read the book and we can chat about it more.

Here's a super interview with Andrew Solomon about his book (thanks to Frank Gavin):

You need 53 minutes of time, but well worth it.

I think the part I really don't agree with is the idea that wishing your kid didn't have *insert issue* means that you wish your kid was someone different. If your issue is intrinsically tied in with your thoughts, maybe, but epilepsy doesn't define my child, and I really wish that he didn't have it. He would still be himself without seizures - does that mean a seizure-free child isn't my child anymore? What if he defines himself by his epilepsy, but then grows out of it? Or if he becomes seizure-free with medications?

I think there's a degree of romanticizing in this. I think... it's possible to go far in the wrong direction, because it's possible to accept something while at the same time saying it sucks.

I guess I just really take issue with the idea of defining yourself as a person by your physical attributes.

Hi Cassandra -- thanks for your message. I don't think Solomon is implying that disabilities that include medical conditions are either an illness OR an identity, but that they can have elements of both, and some will have more of one or the other, or may change over time. I don't recall seizures being a key part of the book (he has 10 categories of conditions, I haven't finished it yet).

I think he is saying that some disabilities like being deaf do not necessarily cause suffering if the person is able to communicate fully in sign language. Or if a person with dwarfism is able to have their home adapted, they may simply be doing some things differently than others -- but still be participating in life. If you read the book it's not romanticized at all -- it's very detailed stories of families.

For someone with dwarfism, a lot of the disability is created by social stigma and exclusion.

I'm not sure how you would separate out physical attributes from other aspects of a person. Autism is a brain disorder that changes the way a person processes and interprets the world.

I certainly don't think of my son's physical pain as an identity -- other than it is part of the package of his syndrome. I don't see any value in it for him and my goal would always be to stop or minimize it.

But I do understand why a person with autism would say that without their autistic characteristics, they wouldn't be who they are. And I believe that for me to wish that my son didn't have an intellectual disability would be to somehow dream of having a different child at the core, and to betray the experience my son has -- which is different than the norm but no less rich.

It would be like someone dreaming "if only Louise were A, B, C." At some point I believe people want to be accepted at their core for who they are, and not have the bulk of their existence devoted to efforts to change them.

But I think that is very different from wishing your child didn't suffer from seizures. I can't imagine anyone who would celebrate seizures.

I think extended family is really important. When we had extended family living close to us, we often had much more opportunity for support that mattered. Grandparents were valued. Cousins grew up together. Privilege and means did not figure in the picture as much as it seems to today. I'm not saying that we only have good nurturing relationships and supports when it involves family. I'm realistic enough to know this isn't always the case. I just feel that something significant changed for the worst in our society when family and community diverged.

Cassandra -- I was just reading the chapter on schizophrenia in Far From The Tree -- and it ends with Solomon describing it as an "unrewarding trauma" that "cries out almost unconditionally for treatment. The remarkable parents I met during this research would be better off, as would their children, if schizophrenia didn't exist. To me, their suffering seemed unending, and singularly fruitless."

I would imagine he would say the same for seizures.

BLOOM - Thank you. That sounds much more reasonable.

I think there can be a real tendency in general to romanticize certain illnesses and conditions, which really just becomes a way to define someone by what they have, not who they are.

This particular excerpt sounds a little bit like that ("the disability experience" is quite the euphemism, isn't it?), but I'm really, really happy to see that that isn't the case with the whole book.