This books looks at what it means to be different, or more specifically, what it means to parent a child who is different. There are chapters on parenting children who are deaf, dwarfs, Down Syndrome, autistic, schizophrenic, disabled, criminal, prodigies, transgender or born after rape. The underlying message is that we are all different in some way and if we could just stop looking at what makes people different, we'd come to appreciate people for who they are.
A recurring theme in the book is, what is or isn't a disability. For some deaf people, deafness is not a disability but a unique culture. One dwarf describes his situation as a 'predicament' rather than a disability i.e. it's only a problem because most other people are tall. If there were more dwarfs they'd be better catered for and, apart from medical complications, it would be no big deal.
Accepting people with disabilities (or people in a predicament) for who they are, means avoiding two extremes: bullying people with disabilities and patronising them with offers of assistance and charity. Solomon suggests that people in lower socioeconomic groups are much more tolerant of difference, whereas affluent people strive for perfection and are more likely to reject children who are not seen as perfect.
Solomon contrasts horizontal identity, that is traits we share with people outside our family, with vertical identity, or cultural heritage, which we usually inherit from our parents (unless they are migrants). People who share the same horizontal identity (being gay, deafness, dwarfism, genius etc) often have more in common and can provide more support than family.
Selective abortion is discussed in many of the chapters. Solomon doesn't argue against selective abortion per se, but brings up the issue of choice e.g. should dwarf parents be able to choose to have a dwarf child, or deaf parents select a child who will be deaf? People with the disability usually say yes. This is not surprising, who would want to prevent people just like themselves from being born? People without the disability often disagree, some IVF clinics refuse to implant embryos that they know will result in a child with a disability.
The book explores a lot of issues. I spent almost a year slowly reading it. As a result, I feel much better informed about these issues, as a parent, as a friend of parents who have children with disabilities, and as a trainee teacher.
Deaf Child
Up to thirty years ago, the big issue for parents of deaf children was whether they should be taught sign language or encouraged to speak. Most parents were pushed down the speech path (this was known as the oralist movement); this was a disaster for many children. The children spent most of their school years learning a very basic form of speech, when they could have been learning algebra etc. On the other hand, children who learn sign language often keep pace with their peers academically. The only drawback of sign language seems to be that parents of children who sign often struggle to learn the language themselves. This leaves the parents feeling like outsiders.
Nowadays sign language is understood to be a full, visual, physical language. The big issue for parents has moved onto whether their child should receive cochlea implants or not. Implants do not restore hearing (and often kill off any remaining residual hearing), but they do allow children to develop speech and fit more easily into mainstream society.
Some deaf people see implants and hearing aids as a form of eugenics, wiping out sign language and deaf culture. There is no doubt that the culture is diminishing, but whether it should be saved, and how it might be saved, is an ongoing debate.
Dwarfism
Most dwarfs or Little People (LP) are born to average height parents with no dwarfism in the family. Finding their baby is an LP usually comes as a shock to parents. Solomon suggests many would prefer their child to have a heart defect or even Down Syndrome.
People tend to stare at LPs, so for many LPs, annual conventions and meetings are a lifeline and the only time they feel normal. When LPs get together height becomes irrelevant and they can finally be noticed for something other than being small. That said, there are some LPs who prefer to stay away from the conventions and feel more comfortable amongst their average height friends.
Opinions vary amongst LPs as to whether or not it is a disability. When it comes to being accepted by other people, LPs don't want to be seen as disabled, but when it comes to disability payments, many would struggle without them. Limb lengthening is a controversial topic. It can add up to eleven inches to someone's height, making the difference between fitting in and standing out, but at the expense of years of painful, expensive and risky surgery.
Down Syndrome
Solomon starts with an open letter from a parent with a child who has DS, to other parents of DS children. This famous letter begins 'Welcome to Holland'. The author goes on to suggest that parenting a child with DS is like thinking you're going on holiday to Italy and finding you've gone to Holland i.e. it's not what you were expecting, but tulips and windmills aren't that bad.
Children with DS might be ahead of their peers academically before they start school, but at about age eight everyone else catches up and overtakes them. They might fit in socially and have regular friends, but these relationships often fizzle out in the teenage years.
Early Intervention programmes for babies with Down Syndrome (DS) can mean the difference between the child, as an adult, functioning around the level of a six year old or a ten year old. That's the difference between needing full time care and being able to live independently and possibly hold down a job. High functioning adults often struggle to hold down a regular job, not because they can't do the work, but because they fail to understand that it has to be done in a particular way. They tend to be tenacious and won't simply do as they're told.
Autism
Unlike the conditions covered in the previous chapters, this chapter suggest that having a child with autism is probably much worse than you imagine. There are a lot of anecdotes about faeces being smeared around, parents being treated as objects, and parents being hospitalised due to mental health issues brought on by raising their autistic child. A parent whose child has Autism wrote a parody of the famous 'Welcome to Holland' letter (see section on Down Syndrome) which began, 'Welcome to Beirut'.
Some people argue that Autism, like dwarfism, is a difference rather than a disability. There is a growing neuro-diversity movement. Silicone Valley employs a lot of people with Aspergers and Autism; they may not have great social skills, but they have great minds. However, it's difficult to argue that not being fully toilet trained, as it the case with many autistic adults, is not a disability.
The chapter ends with examples of parents who have finally cracked and killed their autistic children (filicide). These are often seen by the courts as being mercy killings and the parents have been given light sentences.
Schizophrenia
The book starts with disabilities that are manageable, at least if you can afford the help you need, but then moves on to the really scary ones. Schizophrenia, the books suggests, is a lot like Autism except it usually strikes in adolescence.
Very little is known about how and why Schizophrenia develops. However, it is thought to be as a result of too few connections in the brain, whereas Autism results from too many. The brain prunes neural connections during adolescence. Schizophrenia is thought to be with a child from birth, but doesn't manifest itself until this adolescent pruning process, which then goes wrong. Schizophrenia shows little correlation in identical twins, which suggest there is a nurture as well as a nature element to the disease i.e. sometimes it remains dormant and sometimes it doesn't.
Many of the adolescents discussed in the book were exceptionally bright teenagers, at Ivy League colleges, who suddenly experienced some sort of psychotic event. The descriptions of hallucinations are terrifying. One of the sufferers described experiencing dead birds in her mouth and a cat gnawing at her genitalia. Like Autism, the chapter includes examples of filicide, but in the case of Schizophrenia more parents seem to end up spending the rest of their lives in jail.
It is extremely difficult to get an adult with Schizophrenia into full time care. They often go through a pattern of psychosis, they have a short stint in hospital were they take medication, they are released from hospital and feel that they don't need medication, this leads to the next instance of psychosis. Sufferers will only be readmitted to hospital if they are a danger to themselves or others, which is difficult to prove.
Disability
Most of the children in this chapter are mentally and physically impaired. Many have little in any cerebrum, the grey matter in the brain that does the thinking. Many are unable to walk, talk, or feed themselves. This is a different situation to children with autism or schizophrenia. It is more predictable. It's still stressful, but the book suggests parents can get used to most things that become routine, even a lifetime of changing diapers and feeding. The issues seem to come when the child becomes too big too handle, or the parents get to the age were they can no longer lift the child.
One family persuaded doctors to give hormones to their disabled daughter that stunted her growth, so she never grew beyond five feet tall. They persuaded the same doctors to carry out a hysterectomy so she wouldn't grow breasts (which would have make lying down more uncomfortable) or menstruate. Many people with disabilities argue that this is abhorrent and that the family were just trying to make things easy for themselves. The author argues that there isn't a clear line between what makes things easier for the child or the parent. Anything that makes things easier for the parent means the parents will be able to look after the child in the home for longer, which is also better for the child. Happy parents, happy child. Opponents of the procedures argue that if you're going to do a hysterectomy to make things easier for the parents, then why not remove the child's limbs (that they are unable to use) so that they are even easier to lift? This sounds abhorrent to most people, but it's a similar argument to the hormones and hysterectomy.
Prodigies
This long and rather dull chapter focuses on music prodigies. It suggests that some children develop music as a first language; they find it easier to express themselves through music than through spoken language. It is this that sets them apart from the child who simply practises a lot.
Solomon is more critical of the parents of music prodigies than any other parents in the book. He suggests the children are often pursuing their parents ambitions rather than their own; he points outs that no child turns themselves into a concert pianist. Children spend thousands of hours practising with very little chance of a career as a solo performer. There is a whole industry looking for the next prodigy, so even if they make it, each child's day in the sun is very short lived.
Rape
Solomon tells the stories of a number of women who have been raped, become pregnant and then had the baby; he often includes the child's story. One or two of the women were raped by complete strangers, but most knew their attacker and some were married to them. A significant number of the children grew up to be abused or raped themselves.
The stories show the devastating effect rape has on the life of the woman and often the life of the child. The women tend to lose confidence in their ability to judge a man's character and so many of them end up in relationships with men who everyone else can see are trouble. Some of the women have gone on to love and cherish their offspring, while others have created physical and emotional barriers that have harmed their child's emotional and social development.
What I found particularly threatening is that in many cases the rapist tries to get joint custody or full custody of the child. The mothers often haven't pressed charges against the men (because they never told anyone they were raped or they were unlikely to get a conviction) and as a result of the rape their lives have fallen apart, so the chance of the father getting joint custody can be quite high.
The chapter ends by looking at rapes that have taken place during war or unrest. The aim is usually to humiliate the enemy or kill the woman slowly by infecting her with HIV. In many cultures if a man is savagely attacked while defending his family he is a hero; if a women is raped in similar circumstances, she is considered a whore, who should have killed herself before letting that happen. I have to say this section made me think twice about immigration. I wouldn't want to live next door to someone whose idea of getting even involves raping someone's daughter or slaughtering their sons with a machete.
Crime
This chapter is particularly good; it has a variety of stories and Solomon has obviously got close to the children and their families over a number of years. Most of the children come from poor, dysfunctional families and have often been sexually abused. Solomon argues that providing ongoing parenting courses for 'at risk' families and counselling for the children, would greatly reduce the number of children who turn to crime and improve rates of recidivism. Many children who are selling drugs or stealing would like to find a way out but can't.
The final part of the chapter tells the story of the parents of one of the two boys responsible for the 1999 Columbine high school massacre. They claim their son was not a reclusive loner, but popular, bright and reasonably outgoing. The death toll is often quoted as being 13, but that doesn't include the two shooters. The parents feel they also lost a son that day. They've seen some hate videos he made and have come to realise that they didn't know what was going on in his life. He'd been bullied and had talked of taking his own life. They've stayed in the same town because there are people there who were friends with their son. They find comfort in not being the only people who failed to notice that something was terribly wrong.
Transgender
There's a whole spectrum of gender diversity. This ranges from a preference for the toys or clothes usually associated with the other sex, through to living life as the other sex, undergoing cosmetic surgery or hormone treatment and finally to undergoing a full blown sex change.
Surgery to genitalia is a last step. Many transgender people live as the other gender but keep their original genitalia. Sex change operations are painful, expensive and even if they look reasonable, fertility is never achieved and levels of stimulation are usually unsatisfactory.
It's okay to be sympathetic towards trans people (while it's not PC to show sympathy towards someone who is gay). To be trans means there is a disunity between the body someone is born with and the gender their mind perceives them to be. In the past, the only option was to try and change the person's mind; this usually failed. Surgery and hormone treatments are now available to treat the body. Hormone treatments allow puberty to be stopped. Testosterone can deepen a women's voice and lead to facial hair etc, while oestrogen can stop a man developing facial hair.
Two things struck me when I read the chapter. The first was the ferocity of the attacks made by other parents on some of the families who allowed their children to cross dress. Many of the children were asked to leave schools, but other families had to leave town because their lives were in danger. The second thing was how young some of the children were when they decided they wanted to dress or live as the opposite sex. Some were as young as three. Not all children that cross dress grow up to be trans (to have a desire to live as the opposite gender), some are going through a phase, while others simply grow up to be gay.
Parents of trans children are in a catch-22 situation. If they stop their sons from wearing dresses it can lead to depression and possibly suicide. If they allow them to, then it often leads to teasing and bullying, which in turn can lead to depression. While it's much more socially acceptable for a girl to be a tomboy than for a boy to be a 'sissy', if a girl wants to go to school in boys' uniform and to be called Paul, they're likely to face bullying.
