“As a society we look back now on how we treated children 20, 30, 40 years ago and we go, ‘God, that was an awful country we lived in’. We will look back on how we treat those children now and we will go, ‘that was an inhumane country we lived in’.”
That’s what I am thinking about how society treats those with a severe Acquired Brain Injury (sABI). One day we will look back.
The thing is, I don’t have to look back. Brendan does not have to look back. Society does not have to look back.
We just have to open our eyes.
And then take responsibility. Don’t blame anybody else. It’s up to us to change what is utterly wrong.
Brendan did that last week on his Sunday radio show on RTEOne when he interviewed Professor Richard Dawkins.
The former Oxford Professor for Public Understanding of Science had said that bringing a child with Down Syndrome into the world was “immoral.” A woman had asked him about the real ethical dilemma she would face if she found out her unborn child would have Down Syndrome. Dawkins replied to the woman, saying: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
Brendan asked for evidence for this – to which Dawkins stepped back from his stance a little bit, stating he may have been “putting it a little too strongly.” – “Given that the amount of suffering in the world probably does not go down, probably does go up, compared to having another child who doesn’t have Down Syndrome, then that’s what I meant”, he continued.
Brendan again asked about Dawkins’ evidence that people with Down Syndrome increase suffering, but the scientist was unable to back up what he just had stated. He went on to admit that he did not know anyone with Down Syndrome “intimately,” to which Brendan said: “Everyone has their own experience of it, and possibly my experience would be that you’re not necessarily right, and I think a lot of people would say you’re not necessarily right.”
One listener commented, “I can name thousands of people without Down’s syndrome who actively reduce the amount of happiness and increase the amount of suffering in the world“.
I was asked by Pádraig’s surgeon in Cape Cod whether I really wanted for someone as active and young and intelligent as Pádraig to have an “intolerable life“, at a time when hospital staff had proposed not once, but many times, that we should consent to organ donation. A nurse beside his bed in the NRH asked us whether it wouldn’t have been better had he died. Someone commenting on an article in The Journal asked whether it wasn’t selfish for us to prolong Pádraig’s “suffering”. The country’s best known neurologist told us on national radio that we needed to understand that a health system with limited resources had to invest those resources in patients with a reasonable chance of a meaningful recovery.
And the list goes on.
Many of them were trained clinical professionals. But to me they sounded a bit like Jim Carey in Bruce Almighty.
You would have thought that those clinicians were all about evidence-based research and treatments. They would have data to back up what they were saying and were recommending. But, like the professor from Oxford, surprisingly they didn’t. They were following some home-made thinking.
The thing is, research has shown, as Professor Andreas Bender explained at the launch of the An Saol Project, that people with a brain injury are as happy and as unhappy, as people without a brain injury. Adapting the earlier quote, you could say, “I can name thousands of people without a brain injury who are deeply unhappy.”
People with a severe Acquired Brain Injury (sABI) are as happy or unhappy as anybody else. And they have a right to life as anybody else.
As Prof. Niall Moyna of Dublin City University’s School of Health and Human Performance said in today’s radio show with Brendan, regular physical exercise is central for all of our physical and mental wellbeing. Just that those who cannot exercise themselves, need help and support to do so.
This is what Pádraig and so many others are doing in the An Saol Foundation’s NeuroRehab Centre.