Jono Lancaster: the man at the centre of the latest controversial storm

The problem with intending to blog regularly about issues that resonate with me and my specialisms means that there is a wealth of material to choose from. What this means in reality, is that I can’t actually decide, so I don’t decide at all. That’s really not good practise. I know.

Then today, the story about Jono Lancaster and whether or not his hereditary condition should deter him from conceiving broke on the BBC. For obvious reasons, it had clear resonance.

Jono is the latest disabled heart throb to be taking social media platforms by storm. Having taken part in a BBC3 documentary about his dilemma to father offspring with his long-term girlfriend of four years, and then featuring in today’s BBC online news story, Jono has unwittingly found himself at the centre of a controversial twitter debate.

There’s the usual arguments: It’s ‘selfish’ to even consider having a child if the parents are highly likely to pass on their ‘impaired’ genes to the child, it’s egotistical, its another ‘burden’ for the state, blar blar blar.

It would be easy to rip these somewhat ignorant and prejudiced arguments to shreds, but it would be a case of preaching to the converted. (I like to think my readers are rather more enlightened than the minority who airs such twisted views!).

What concerns me isn’t so much as the views itself – there always will be such unsavoury opinions – it’s the fact that these views don’t seem to be dying out. They are the same as they ever were, and in some cases, are the very same that sentenced so many disabled people to life inside institutions in the 19th century.

There seems to be the fear that disabled people having disabled children are helping to spread a ‘pandemic’ of disability. It’s the same type of fear that terrifies people into believing that one day Britain will no longer be a ‘white majority’ but shock horror, be made up instead of hugely diverse ethnicities leaving the poor white man in the minority. Well, so what?

What really concerns me is that no one seems to be challenging these views. There are documentaries about difference a-plenty, documentaries which educate as well as documentaries purely to shock and disgust. But very few media outlets actually address the views that appear to advocate (indirectly) repressing difference and therefore disability.

The assumption is that the child will suffer, having inherited the disability, or have a less meaningful life than if they were non-disabled. Where do we draw the line? What if disability was defined as anyone with red hair, or anyone with freckles or grey eyes? Would the red-haired child suffer any more than a blonde-haired child?

Of course the severity of disability (in itself a huge umbrella term that encompasses a huge range of conditions) will ultimate dictate the quality of life a person has, but that quality of life is actually dependent on society, not on the person themselves.

If every single service, system, event, place etc was fully accessible for those with visual, hearing, mobility and/or speech or communication conditions, in what way would such conditions be a disability? Disability as we know it would cease to exist if no one experienced barriers in their day-day-life.

There would be no more special adaptations or access requirements needed because they would already be there. There would be no need to explain or make allowances for differences because it would already be part of an inclusive society. What place then, would disability have in such a utopia?

I am under no illusions that such an idealised society is going to happen overnight, if at all, but I think it demonstrates  that disability is more  to do with the constraints society places on it rather than the disability itself.

People like Jono shouldn’t be made to feel ‘selfish’ or ‘an added burden on the state’  if they choose to have children even if the risk of disability is high.

It’s entirely the choice of the parents, and if their choice is to conceive, then that is their right and no one else’s.

Categories:

Disability, Disability discrimination, Human rights, Reality TV

2 Comments

  • samedifference1

    18/04/201123:37 Reply to samedifference1

    I’ve written about passing on genetic disabilities a few times at Same Difference.

    My own disability isn’t genetic, but if it was- if I had one child with the disability I would put it down to chance and bad luck and love them as much as any child. But- if I had one child with a disability that I knew was genetic I would think very hard before having another child. I see nothing wrong with disabled children- I was one myself- or with disabled adults having children- they have just as much love to give as anyone else- but, would a loving parent knowingly give a child anything that they considered to be a disability? It’s a very difficult question.

    At the same time the idea of genetic screening makes me shiver with fear at the thought of a world without a very special group of people.

    As for Jono Lancaster- he is both a heart-throb and an inspiration and I can’t wait to watch the programme tomorrow night at 9.

  • Hedgie

    18/04/201118:28 Reply to Hedgie

    Very well argued. My only reservations are:
    * some conditions are painful and debilitating, besides restricting full use of the senses and of bodily functions that able-bodied people take for granted. That has nothing to do with society, though society does need to learn to be more adaptable. This takes me on to the second point…
    *that we don’t at present live in this ideal equal and all-inclusive society and so disabled people do suffer as a result, much as we fervently wish it otherwise. Education, jobs, personal care, medical treatment are all limited. We can and should fight on to improve matters, but until there are significant changes, the decision whether or not to ‘risk’ having a child with an inherited disability remains an issue to be faced by the parents. Sadly, there’s no escaping from that.This should not put off Jono and his partner, or anyone else facing the same dilemmas, from having a child, but it’s a decision only the prospective parents can make and it’s not the business of A.N. Other to judge their decision.
    I wish them a happy outcome and a loving and fulfilling family life.

Leave a Reply

Your email address will not be published. Required fields are marked *