Last Night's TV So What If My Baby Is Born Like Me? / BBC3 TrueStories: Village of the Doll / More 4
The internet's been a wonderful thing for bullies, permittingthem to indulge their hobby of making people feel wretched at anytime of the day or night. If you get to the end of the day andsuddenly realise that you forgot to make someone cry, then you canlog on to a discussion forum and let rip, all with minimalexpenditure of effort and minimal risk. Jono Lancaster knows aboutthese kind of people because he was born with Treacher-Collinssyndrome, an inherited genetic disorder that affects the bones ofhis face, and the fact that he's had the nerve to pair up with apretty girl seems to have driven some people into a spitting rage.Quite why Jono bothers looking at the websites on which theyadvertise their inadequacies I don't know (perhaps the film-makersasked him to). But you can see that the world might look like a veryunkind place when viewed through his distinctively sloping eyes.
Unkind enough, certainly, to make Jono a bit wary about having achild with Treacher-Collins syndrome - the conundrum at the heart ofSo What If My Baby Is Born Like Me? You don't get a lot of moralphilosophy on BBC3 but that's essentially what this was, as Jonowrestled with his own doubts ("I could just sit in a corner andargue with myself all day long") and explored his options. "How canI knowingly put my own child through potential suffering?" he asked,a telling grammatical glitch. In truth, the child was still as"potential" as the suffering. It didn't actually exist to have itsrights addressed. But somehow, Jono felt that it did, and thatbattle between instinct and logic ran throughout the programme.
He would happily adopt a child, but his girlfriend isn't keen. Sothey set off to consult with experts, allowing the viewers to get anelementary course in hereditary disease and in vitro screeningtechniques. I think it's fair to say that they were starting prettymuch from scratch. Jono, for example, appeared to believe that pre-implantation genetic diagnosis - in which embryos created in vitroare screened for the faulty gene - involved removing only the dodgycode rather than the embryo itself. He went white when he eventuallylatched on: "In theory, it would have screened out me!" he said. Theargument, advanced by some disability-rights campaigners, that PGDis just another kind of eugenics is not one that he can bedispassionate about. He felt even more strongly about the otheroption: having a baby naturally and then aborting it if tests showedit was carrying the disease. That, he said, would be "giving up onit halfway through".
On the other hand, he asked, how could you live with the guilt ofexposing your child to a lifetime of hardship and pain? Jono andLaura visited a couple whose child was one of the rare cases ofTreacher-Collins that arise spontaneously, rather than beinginherited, and you could see that it left them shocked. That, Isuspect, is where the loophole lies for Jono's conscience. Toprevent a disability from coming into existence is not the samething as suggesting that the disabled have a lesser claim on lifeonce they exist (even if the matter is complicated by cases wherethe cure involves a cull). Unfortunately, moral argument is alwayslikely to carry less weight in these things than inner feeling.Trapped between all kinds of incompatible good intentions, Jonoeventually came to see (I think) that there was no solution thatwould free him from doubt. His girlfriend, Laura, inadvertentlysummed up the confusion perfectly, after they had reluctantlyarrived at the decision to have IVF with screening: "It might not bemorally right," she said, "but it is right."
True Stories: Village of the Dolls explored another grey area -the blurred boundary between private compulsion and art. It told thestory of Mark Hogancamp, who was left badly brain-damaged after abeating in a bar and worked out his own form of rehabilitation bycreating an imaginary town called Marwencol, populated by customisedBarbie dolls, GI Joes and action figures. Mark has worked out adetailed and evolving back story for Marwencol and takes photographsof the incidents that occur there. To most people this would look alot like a symptom of brain damage rather than a remedy for it, butit also looked like art to an avant-garde magazine publisher, whoarranged for some of Mark's pictures to be shown in a GreenwichVillage gallery. Jeff Malmberg's strange and engrossing filmrecorded his increasing nervousness at the prospect of going outinto the world again. He's not as nervous in upstate New York, butthere he can take the precaution of trundling a toy jeep alongsidehim, filled with Marwencol characters armed to the teeth with tinyguns. With that amount of firepower, he explained, he'll probably besafe.
Village of the Dolls was constructed with teasing skill, holdingback some revelations until quite late in the film. "It getsstranger by the minute, don't it?" said Mark cheerfully - pullingback a curtain to reveal his vast collection of ladies' shoes - andthe fact that he's a cross-dresser from the ankles down. At theopening night, he spent most of his time taking pictures of the feetof the female guests, building a portfolio that may well provideanother show in a few years' time. Oddest moment? When it wasrevealed that the alter ego doll "Mark" had been working on an evensmaller model town himself.
t.sutcliffe@independent.co.uk
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