this bubble will burst; or, Jono’s Dilemma

all through my life, I’ve felt like I’ve been in my own little bubble, my own world… and no matter how hard people try, they can’t get into my bubble…  I think having my own family, this bubble will burst…  I want a child and nothing and no-one’s gonna stop me achieving that…

Jono Lancaster, “So what if my baby is born like me?”

Having a child is not a simple decision for anyone.  Of course, in the past, it was rarely “a decision” – it just happened or it didn’t.  Now, not only are we in the contraceptive era, but we are also in the DNA era.  Which means for most people, the whole process involves some serious thinking and feeling.  Last week, I watched “So what if my baby is born like me?”, a BBC documentary, which followed Jono Lancaster and his partner Laura, as they decide if and how to proceed.  As you’ve probably already guessed (from the above photo, or from knowing what this blog tends to cover…!), their situation is especially complicated.

Jono suffers from Treacher-Collins Syndrome, a congenital disorder characterised by cranio-facial deformities and related medical complications.  Jono discovers he can undergo genetic testing, to see if the defective gene can be identified – if it is, they then have the option of going through IVF and selecting the “best” embryo.  To be clear, this is not just about appearance and social discrimination – someone born with Treacher-Collins potentially may have trouble breathing, faces early death.  And, just as is the case with many genetic conditions, there is a 50% chance of passing the gene on, but no way of knowing how severe the syndrome will be for the child.

The documentary is worth watching not for these medical facts, of course, but for the human story – as Jono and Laura talk together and with genetic counsellors, with other parents, and with a children with the same condition, the viewer is taken into the heart of an acutely personal and contemporary conundrum.  It’s what I’m calling “Jono’s Dilemma” – and it’s common to everyone with genetically obvious conditions.  If you decide to abort a foetus (or not select an embryo) based purely on it having the same genetic condition as you, is this some kind of betrayal, of yourself or others with your condition?  Is it a kind of personal eugenics?  Or is it, rather, the only sensible and compassionate choice to make?

At one point, Jono almost loses the power of speech when considering the idea that if his parents were able to decide to abort or select, he may have never been born.  It’s a dizzying philosophical question – how can I will the non-existence of someone like me?  Or, from another angle, if I didn’t have this condition, how different would I be?  Or, again, fundamentally, if I didn’t exist, don’t questions like these become completely moot?

When Laura says to Jono, with great frustration and love, “you’re not a genetic condition!”,  I couldn’t help also thinking of my own ambivalence about Marfan Syndrome (the genetic condition I have).  I have oscillated over the course of my life between resentment, pride and nonchalance, and everything in between.  I still think it’s almost practically impossible to be neutral or to separate yourself from your condition, I do think that what Laura says (and what all the other caring partners and parents in the world say) is totally right.  We are, and are not, our genetic conditions.

Jono is a smart, sensitive and charismatic young man (who, heartbreakingly, the documentary reveals, is mocked online in response to his appearance on TV).  So, yes, on one level, he’s easy to identify with, but on another, his dilemma is not mine, nor is it yours.  And the very fact that they are being filmed and broadcast, means that their decision is made to carry an extra, political weight.  It’s no wonder he says “I feel like I’m disrespecting or offending [people]…”.  Genetic screening and decisions around people with disabilities are intensely politicised – every action is seen as influencing future decisions, giving momentum to one side or the other of a polarised debate.

The various ethical frameworks that we have drawn on for centuries are now facing immense technological, social and information changes – changes that affect the very nature of the decisions we are making.  And these changes are happening at an incredibly fast rate, whereas our ethical systems evolve slowly.  We still intuitively grasp for them for support or guidance, but I’m not sure they function so well anymore.

When I was younger, I was very attracted to a radical position.  But now, increasingly I feel that the debate is best left to the private space between partners and inside their particular minds, hearts and bodies.  Ironically, So What If My Baby Is Born Like Me? allowed us the privilege of seeing inside that private space – but it also reminded me that making that private decision-making process public doesn’t make the process any easier.

The full documentary can be seen here at Top Documentary Films.  And, yes, on YouTube (in 4 parts) – part one is here.  The BBC page is here.