Double Exposed

DOUBLE EXPOSED

Durban photographer Angela Buckland has teamed up with social scientists to give a ground-breaking new take on disability, in a book inspired by raising a special-needs son.  She speaks with Glynis Horning.

“Every parent’s secret dread is a dodgy child,” says Angela Buckland, as her 9-year old clambers happily onto husband David’s lap, then pokes compulsively at the top of his head with a pencil.  She’s smiling when David leads the child firmly away, but tears film her eyes.

It’s Angie’s combination of candour and caring that gives her words, like her photographs, such power.  Both are caught between the covers of an extraordinary new book out this month, Zip Zip My Brain Harts, with commentary by Stellenbosch psychology professor Leslie Swartz, his research assistant Kathleen McDougall and Human Sciences Research Council (HSRC) researcher Amelia van der Merwe.

In the foreword justice Albie Sachs, who lost one arm, links the book’s conception to the “democracy of the disabled” that he joined in 1990, when he was asked to advise on advancing the rights of the disabled, and confronted his condition for the first time.  The book was born seven years later – with Nikki.

“He was our first child and we were euphoric, “says Angie.  She was 35, a respected photographer, and her architect husband, David, was 40.  “We’d been married for nine years, we had a dog, a house; this was the natural next step, he says wryly.  Angie had a perfect pregnancy culminating in a home birth with a trusted midwife.  “But after a few hours the labour stopped.”  A dash to the hospital followed, and 36 draining hours later, Nikki arrived.    

“Though Nikki weighed just 2,7kg, he seemed fine to us but we did not realise what we were in for.  Nikki was a fussy baby, who hardly slept, but a paediatrician gave him the all clear at 10 days, and two months passed before their midwife suggested something might be amiss, and recommended a homeopathic doctor.  “It was when the doctor told us to take Nikki immediately to a specialist paediatrician that alarm bells went off”. 

 Zip Zip

Endless tests and consultations with geneticists and other medical professionals did not even bring the comfort of a diagnosis: Nikki’s disability has no name or known cause; he’s simply described as “low functioning.”  “It was all so alienating, so terrifying,” says Angie.  “From having them carry our baby off screaming to take blood from his jugular (no other vein was big enough), to answering endless – painfully intimate – questions about our families and ourselves.  No one wanted to comment.”  The first real guidance she and David received was when one specialist gave them the number of a mother of a severely disabled child.   “She’d put her kid in an institution, a route we would not go”.

It was another parent who provided what Angie and David felt was the best way to proceed.   “Jenny Buckle, a Cape Town mother of autistic triplets, had researched all possible approaches, and concluded the best is to try to recover your child with intensive tutoring and stimulation.  Parents themselves can’t do it – it’s too gruelling and we need to focus on parenting.” says Angie.     

She found two young tutors and arranged for a retired psychologist friend to train her and David in methods most helpful for Nikki.  His biggest problem is non-compliance.  He won’t listen and is tactile defensive; he struggles with sensory overload. 

Nikki responded so positively to the intense behaviour modification programme that he was able to attend an ordinary preschool for a year.  But when other children progressed he lagged behind, missing all major milestones.  At 9, he still has the mental ability of a 3-or 4-year old.  “One of the hardest parts of having a child like Nikki is accepting there can be no proper “recovery” says Angie softly.  It’s learning to let go, and just do your best”.

Snap Snap  

 Part of Angie’s own way of coping has been to use her photography to process the bewildering complexities and overwhelming emotions of their situation.  In the first series in her book, she superimposes clinical X-ray images of her son’s physical idiosyncrasies over tender portraits of him, highlighting the difficult relationship between the family and the medical profession. 

As one mother puts it in the book, “I mean, I think our son is so handsome and then the doctor just ripped apart his face: “He has all these dimorphic features.  His eyes are widespread.  He has no bridge on his nose.  His ears are too low.  “I felt like I wanted to wring my own neck because I would look at my son and find myself thinking, oh, my God, he does look like that”    

In a carefully researched but unusually empathetic commentary, Swarz, McDougal and Van der Merwe say that parents frequently find the medical way of seeing and dealing with disability dehumanising.  This feeds into insecurities and fears – mothers especially are under great social pressure to produce a “perfect child” as part of what is seen as the “women’s” role.

But while we’re brought up to believe medicine and science should be able to fix anything, they say, the reality is that doctors cannot cure everything.  What doctors’ often then do is “try to do more and more investigations to find a cause or cure when they suspect – or even know – this quest is hopeless.  Or they may protect themselves from a sense of hopelessness and despair by trying to cut off emotionally.

“What we need to learn from, “conclude the researchers, “are those encounters where somehow both the parents and the doctor get it right – where it’s not about fixing problems, but about working together in a constructive, respectful and helpful way.”

Until then, the formal medical approach leaves parents confused and emotionally bereft.  It may also encourage the age-old idea of disability as flawed and freakish.

“But what if disability were considered ordinary?” the researchers suggest.  “What if it was considered not so much a sign of incontrovertible difference, but just one among many differences that there are already between people?” 

It’s this sense of the extraordinary as ordinary that Angie set out to capture in her second series – photographs of clothing made or altered to hide children’s differences, but also to help them cope with their physical challenges.  Instead of shooting garments like this as objects signifying otherness, “perhaps even shame,” Angie opted for a more practical approach.  “I was very aware of the notions of idealised childhood in Pampers and chain store ads.”

For the third and final set of photographs in her book, Angie worked with her family and five others to interpret different aspects of their lives with disabled children.  “Everyone’s situation is different depending on the severity of the diagnosis” she says.  “The only certainty is uncertainty”.

Singed Wings

In varying degrees, however, every family must deal not just with the gruelling daily challenge of parenting but with guilt and blame.  “Family members start looking down on you”, says one mother.  “I have had some look at me and say, “What did you do when you were pregnant?”

Then is the sorrow for what might have been.  As another parent put it “It’s not just the grief of losing the child you dreamt of, but also the parent you dreamt you might be”.

What has been described as the “trauma of dashed expectations” is more complicated than grieving for a child who has passed away, say the researchers.  “The child who has “died” for parents of disabled children is imaginary, so they do not get the ritualised community support that people receive when someone actually dies”.  Instead they’re often encouraged to focus on the “specialness” of their child, to the exclusion of expressing emotions like anger or frustration.

“But you learn to survive – you have no choice, especially when you have a second child”, says Angie.   Nikki’s sister Christine was born 18 months after him, and is “whole and bright and very beautiful.  This is all hard enough for her, and it will get harder when self-consciousness sets in.”

Already she must contend with disapproving stares as Nikki barks in public and runs out of shops with sweets stuffed down his shirt.  In academic literature, say the researchers, parental grieving was understood to progress through shock, denial, anger and depression before acceptance with “realistic caring for the disabled child.”

But it is no longer believed to be a simple linear process – the stages may not always run in the same order, and they may return.

“Nikki is so dear, but living with him is a work in progress, says Angie as Nikki flits by.  Adds David: “Sometimes I see him as an angel from heaven that singed his wings on the way down”.  All they and many parents in their position want, they say, is for their children to be accepted and acknowledged, and have access to support, resources and occasional respite.

“We once holidayed in the fishing village of Arniston, where the local community embraced Nikki like one of their own, taking him off to play”.  On the night we left, the village kids came and sang songs about their own problems, like poverty and unemployment, just as they’d shared in ours.  There’s nothing more healing than honest exchanges and empathy” says Angie.       

           Article from Associated Magazines August 2006