Friday 24 May 2019

Parents of children born disabled must make an imaginative leap

Colin Farrell with his son James, who suffers from Angelman's Syndrome, which is characterised by developmental difficulties and seizures
Colin Farrell with his son James, who suffers from Angelman's Syndrome, which is characterised by developmental difficulties and seizures
The Special Olympics highlighted the extent to which issues surrounding disability are changing, with the stigma attached to many conditions now generally being outweighed by the help people receive.
Donal Lynch

Donal Lynch

Parents of children born disabled must make the imaginative leap to nurture an infant whose life experience is radically different from anything they have ever encountered. But how they can relate and do what's best for their child

All children are special, but some are more special than others. Most expectant parents spend the nine months of pregnancy nurturing the belief that their child, when it is born, will be the most incredible infant the world has ever seen. In the end the majority will find their conviction vindicated. Although bystanders may only see another defenceless bundle, barely indistinguishable from any other, to the new parents, relieved to have gotten through the hazardous journey of childbirth, the key signs that their child will be "normal" can seem like their own kind of miracle.

For many new parents, however, the experience of bringing a little stranger into the world is not one of exultant relief but the starting point for a gradual lowering of expectations. Perhaps the new miracle will not look you in the eye. Perhaps she doesn't wake up when the smoke alarm goes off. Perhaps the first few years are an endless round of journeys to see a consultant, who advises you on how to recalibrate your hopes for the child you thought you'd have. Or maybe you're lucky and none of that happens, and it takes until later before the complications manifest themselves.

Maybe, like Colin Farrell, you see your son in a group of four-year-olds and it comes back to you again that he's different from other boys – Farrell's son James has the genetic condition Angelman Syndrome which is characterised by developmental difficulties and seizures.

Maybe, as happened to Neil Young, both of your sons end up with cerebral palsy.

In each case the parent, a hostage to love, is asked to make the ultimate imaginative leap: how do you nurture a child who is both the centre of your life and whose life experience is radically different from anything you have ever encountered before?

For Megan Williams and Michael Shamberg, an American couple based in Los Angeles, being the parents of a deaf child meant uprooting their lives to live in another state. They had noticed that Jacob was deaf when he had not responded to loud noises as an infant. They found the education offerings open to him to be grim in the extreme. In response they researched everything to do with deafness, its psychology and biology, and vowed, like many parents of deaf children, that their son would have the best of everything.

Megan helped start a hotline for deaf children and she and Michael organised funding for a groundbreaking playschool, which taught deaf and hearing children together. But even these Herculean efforts weren't always fruitful. The reaction from deaf activists who had seen Michael and Megan's experiment was instructive. In a now-infamous quote one of them told Megan: "The best thing would be to give your child to a deaf family and let them raise him."

It's a scornful, dismissive remark that has itself since been met with some scorn – one Irish deaf activist I communicated with while researching this piece told me that hearing parents are "well able" to raise a deaf child – but it was also a starting point for much debate.

The case of the Williams-Shamberg family is discussed most famously in Andrew Solomon's seminal book Far From The Tree: Parents, Children, And The Search For Identity. Solomon is fascinated with the way in which parents interact with children who represent breaks from the inter-generational channel of shared experience. Most people who consider themselves Asian, say, or Jewish, have parents who have the same frame of reference. Solomon calls this "vertical identity" – the parent and child might both belong to an embattled minority but the child will at least have the benefit of the acquired wisdom of the parents.

But what if you are the parents of a deaf child, like Jacob. Or a dwarf child? Or an autistic child? Or a gay child? Solomon calls these "horizontal identities": there's a split between the basic facts of the child's life and the experiences of those who are charged with guiding it. The continuity of the generations is broken and in many cases it falls to the children, these "little strangers", to provide the educations, both to themselves and others.

"He is my teacher," says New Ross-based David Maher of his 14-year-old autistic son, Michael. "We've worked hard to give him certain things – he's learned a lot of social skills for instance – but by the same token I think hardly a day goes by that I don't learn something from him. You learn lessons about human nature, philosophy and understanding.

"I couldn't possibly wish him to be any different because an important part of all of this is just accepting him as he is. We constantly research autism and the issues around it. The frustration we've experienced in getting him an education comes not from him, but from trying to help him navigate the system. He's as entitled to an education as any other child."

The expectation that parents will meet these challenges head on, becoming both student of, and advocate for, their disabled child, is a relatively new one. For generations, the Western world saw it as socially acceptable to confine disabled or intellectually challenged children to institutions. Disability was stigmatised and blame for it was often laid at the feet of the parents. The movement away from this mindset was largely driven by adult disability advocates and perhaps it is natural today that there is sometimes tension between the 'community', of which the child finds itself a part, and the parents, who feel they know what is best for their child.

Do you partly deal with your remnants of grief for the child you thought you'd have by pushing them, as far as possible, into a mainstream class where they may be left behind, or do you allow them to languish in a poorly resourced disability-specific class where they run the risk of picking up "the worst from the worst-off kids", as David Maher puts it?

And whom do you trust in making this choice? The medical experts? The child themselves? The disability community?

Caroline Carswell, who is deaf and runs Irish Deaf Kids, an award-winning venture geared to supporting inclusive mainstream education for deaf children in Ireland, says that within the deaf community there is still debate about what is the best approach.

"My peer group growing up was verbal deaf – we communicated verbally with each other and with hearing classmates by speaking and lip reading with hearing aids, and did not use sign language since we were educated in mainstream classrooms", she tells me. "Later in life, some of this deaf peer group learned sign language, others did not. We were all given the option to learn to sign, as children.

"Parenting is a challenge for any child" she adds, and "seeing the child first and the hearing (difficulties) second" is key to dealing with the issues that arise.

A study by The National Disability Authority in 2007 revealed that those with disabilities themselves were generally in favour of disabled and non-disabled kids sharing a classroom.

For the rest of us the question must be what exactly about disability makes us uncomfortable? How can we help the parent and child who find themselves on either side of the disability divide? Perhaps there are analogies to be made between disabled kids and the rest of us. Solomon's book was controversial partly because he thinks that identities like schizophrenic, child prodigy, gay and transgender share a lot in common with disability. Each requires particular kinds of navigation within families and each requires protection under the law, he argues.

Booker Prize nominee Colm Toibin is among the authors who have written in an Irish context about how horizontal identities are a particular challenge for gay people, each of whom may feel like a cuckoo within the nest of their own family. While acceptance of gay rights is on the rise generally the latest research indicates a majority of gay people still struggle to find acceptance within the group that counts the most to them: their families.

Paradoxically this lack of acceptance usually grows out of a misplaced love. The parents consider society an inhospitable place for gays and think their own reaction will prepare the child for the even rougher response they will receive in the wider world. But this tactic always backfires, as the family is the first place a child learns self-esteem.

A recent study on the subject by the San Francisco based Acceptance Project concluded that "by trying to prevent a child from learning about their sexual identity or from being part of support groups, or by telling them they are ashamed of them or not talking about their sexual identity, these kinds of reactions are rejecting behaviours that are all linked to negative health and mental health outcomes in children when they become adults".

Solomon, who is gay himself, writes that what his parents did not understand was that "the tragic narrative they feared for me is no longer inevitable".

A part of the reason for this was that throughout his lifetime – he is 49 – homosexuality was rapidly gaining in terms of mainstream acceptance. One element was the notion that gay people were marked out in positive, as well as negative ways. One of the old family euphemisms for 'gay' was 'special' (it was up there with 'artistic') and it's probably no coincidence that this word is now associated with disability groups, such as the Special Olympics. It's a descriptor we have embraced with gusto. That old Irish suspicion of anything that was different has been replaced with a glamourising of 'special'.

"These days, we glaze over at 'normal'; our dream in life and romance is to connect with people who appear unique and far beyond the high arch of the bell curve," the American journalist Nathan Heller wrote. "That may be why we have such a fraught, solicitous approach to disability: it's the awkward flip side of our pleas for specialness. Every child who isn't like us is a potential window onto something more."

For parents, the experience of raising a child who is profoundly different from them has become a less lonely one. They must know their children's own narrative is not automatically tragic. There are disabled politicians, disabled comedians, even disabled heart throbs – wasn't that part of Oscar Pistorius's appeal?

Aside from the fanfare around the Special Olympics and Paralympics the extent to which ideas around disability have changed in recent years can be seen in any Irish classroom, where a good proportion of the kids will have been diagnosed with dyslexia, ADHD and other mental and physical conditions. The help these children know they need generally outweighs the stigma associated with the conditions. The term 'freak' has become cool for teenagers.

It's probably no coincidence that we are, in tandem with this, becoming an overall more plural society. Difference is celebrated like never before. Religion is no longer an issue for the majority of us. Racism is, at a surface level at least, no longer acceptable. Irish kids are coming out as gay at a much younger age too – in one Southside secondary school four boys took male partners to their debs two years ago.

The horizontal identities, Solomon's "little principalities", are rising up. We are all in one fight.

Sunday Independent

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