One of the paradoxes of this individualistic era is that we long to be unique, but at the same time, the difference terrifies us; it´s evaded and, in the worst cases, it’s marginalized. Andrew Solomon, author of the book “Far from the Tree”, is gay and lived rejection in his own flesh during his childhood. “We live in times of xenophobia”, he says, but despite this crisis of empathy, he believes that compassion flourishes within homes and that “intimacy with difference encourages assimilation.”
It is what he observed in most of the more than 300 families with children radically different from their fathers and mothers that he interviewed for his book. Understanding how they overcame the fear of difference and learned to appreciate the great value of their children -deafs, autistic, schizophrenic, among other cases- can give us guidelines on how to do the same in our society.
Without falling at all in the sentimentality, the stories of both children and fathers and mothers shake. They describe in some overwhelming detail the enormous obstacles they face, but at the same time they propose the central idea that what we see as a disease can often also be an identity. They allow us to appreciate, for example, deafness not as a deficit, but as a true culture, rich in language, ways of life, etc. and they show with admiration the sense of community of numerous groups that offer the possibility of fully living a horizontal identity (that is, an identity radically different from that of their parents).
Impossible not to question the concept of disability. Solomon quotes the case of Deborah, blind from birth, for whom lack of vision is a feature as irrelevant as the length of her hair and who does not understand the enormous relief of her sighted husband when they confirm that her daughter was not born blind. Is it not that the concept of health is merely a convention and that of “capacity” is a tyranny of the majority?
After each case, the underlying question appears: Cure or accept? Correct or celebrate the difference? Should a child born with achondroplasia (a cause of dwarfism) undergo painful bone lengthening treatment to gain a few centimeters, or is it the environment that should accommodate people of short stature? Is the cochlear implant the only way for a deaf person to lead a life as full as that of a listener?
Solomon’s examples show that there is not a single correct answer and each family will decide according to their convictions and possibilities. Science is moving in the direction of healing and it’s clear that nobody wants to see their child suffer. However, even among those affected, the question arises about the consequences it would have for human wealth if these “cultures” were extinguished. A father of a child with Down syndrome admits that, if he had a magic wand, he would heal his son, so that he would have an easier life. However, the same father adds that the diversity of human beings makes this a better world and “if all people with Down syndrome were cured, it would be a waste.”
Relieving suffering effectively will depend on whether we can distinguish to what extent the origin of pain has to do with a disease of the body/mind or comes from the lack of empathy and acceptance of the environment, or a combination of both.
Insisting, for example, on “correcting” the difference when healing is not an option can be, often, cruel and inconducent. Solomon recalls the painful period in which he himself tried to “cure” his homosexuality, driven by the bullying he suffered throughout his childhood, in circumstances that what could be done was to assume his gay identity. Clear example of a social model of disability, where what needs to be cured is not a disease but the entrenched social prejudices.
In other cases, however, the disease is real and cries out for a cure that does not exist, which adds to the social stigma of mental illnesses that often prevents early intervention that would facilitate inclusion. Solomon quotes dramatic cases of people with schizophrenia; those located at the end of the autistic spectrum or those with severe multiple disabilities, which testify to a touching resilience and a love and admiration of parents for their children that crosses any barrier.
The reality is complex, but wherever we place ourselves between the “disease model” and the “identity model”, at the end of the day the testimonies collected in this book prove that the difference can be accepted, whatever its origin. The key seems to be to change the reference points, in order to respond as the mother of an autistic boy who is asked: “How do you imagine Ben would be if it was normal?”. “Well”, replies the mother, “I think he is normal to himself”.
What is it about:
“Far from the Tree”, by Andrew Solomon (Debate, 2014), brings together more than 300 interviews with families with children with identities radically different from those of their fathers and mothers, who have learned to love and appreciate the difference. It is a celebration of the value of human diversity and a call to inclusion in our society.
Each chapter analyzes a condition thoroughly: deafness; dwarfism; Down’s Syndrome; autism; schizophrenia; severe multiple disability; child prodigies; children product of rape; delinquent children; transgender children.
In July 2018, a documentary with the same name was released, directed by Rachel Dretzin, and co-produced by author Andrew Solomon.
