Today is Moo’s birthday. She is so excited and it’s a delight to witness. However, it also brings up a lot of painful memories of the day that she was born. How terrifying it was, how close we came to losing her and what a little warrior she proved herself to be.
Recently, I watched a documentary on BBC2 called ‘A World without Downs?’ and it got me thinking, obsessing actually. I didn’t realise that screening for abnormalities in pregnancy was brought in without an enquiry into the ethics of doing so. No one ever discussed it and where it could lead to. They just introduced it without so much as a second thought.
Now, I am in an unusual position. I’ve had a late termination due to severe abnormalities and then gone on to give birth to a baby with a variety of medical conditions who is labelled as disabled. So I’ve been on both sides of the fence.
When Moo was born, someone said to me that I should sue St George’s for not picking up her complications and need for a tracheostomy. For the life of me, I couldn’t figure out why anyone would say that. Were they assuming that had I known, I would have terminated, just because of a trache? I, sure as hell, wouldn’t have. Mainly because I wouldn’t have realised how difficult life with a trache would be or how it was to fracture my psyche, for the first two years at least.
When picking up abnormalities, doctors have a tendency to tell you all the challenges your child will face, how ill they will be, what they see as a poor quality of life. It’s not their fault. The only time that they see these children is when they are ill and suffering. What they don’t see is the times at home when there is laughter, love and light.
Having a disability is not easy and caring for a child with one tears at your heart and soul at times. It is really fucking hard. I now have my friends, depression and anxiety, to bring along for the ride. It can truly suck. As a parent, you cry a lot, you lament a lot, you suffer a lot but you also laugh a lot, smile a lot, love a lot. The happy times get you through the rough times. It forces you to see life through a different lens. The material becomes immaterial. You still love nice things but the import of them is significantly less. Small challenges overcome are to be celebrated. Successes are joyous occasions. Life is intense in all its pain and glory and wonder.
In the middle of all this chaos, stands a child who you love with all of your heart and then some. A child who, through their very existence, brings you strength you never knew you had, teaches you greater wisdom and compassion by introducing you to worlds you never understood.
One of Moo’s teachers said to me that the two best classes she ever taught were Moo’s and another two years later. She believes that the reason that those two classes were such lovely children was because they were the two with disabled kids in it. Moo has taught her friends that there is beauty in difference. The children in her class are some of the kindest and most compassionate you will ever meet. They know that not everyone is the same, that different does not equal less. They are already learning that the true moral test of a person is not how they look or if they win, it’s how they treat their most vulnerable member of class.
Does all of this mean that I condemn those who have ended pregnancies because of disability? Absolutely not. I completely understand why people choose termination. I did. It is a truly scary prospect and the worst decision we are called to make. The grief stays with you for the rest of your life. The tragedy is that you don’t know what you are capable of coping with or how a disabled child will positively affect your life unless you have lived with one. It’s an absolute gift, a bittersweet one, but a gift nonetheless.
My issue is that I now find myself questioning whether we should have ever been given the choice, at all. If that choice hadn’t been available, Ziggy would have died the day he was born. My grief would have been the same but I would not have been able to spare him that kind of pain. Do I regret the decision I made? Absolutely not. Do I wish that I hadn’t been given the choice? Yes. I am a person who needs to know all the facts. I want to know the sex of my baby and how long their legs are. If there is a test available, I would take it. If the test wasn’t available, then of course I wouldn’t.
No one knows what they are capable of dealing with, what will make them grow, what lessons life will teach them. Nor do you know what joy can be brought to your life by someone like my Moo. She has a wonderful life and she doesn’t know any different. As far as she is concerned, she rocks. She’s right.
Moo was recently diagnosed as autistic. So I started researching it and learning about it. Before she was diagnosed, I had thought “well, as long as she isn’t autistic”. What an idiot. It turns out that I have a heck of a lot of the traits and can completely understand how to help and support her. She may get worse over time, she may not. However, I know that, as long as I believe in her and help her achieve all that she can, she’ll be just fine. It’s not the worst thing in the world.
If we continue to try to eradicate conditions and disabilities from society, like the way that Downs is slowly being weeded out simply because it is very easy to test for, we are weeding out types of people. They are a different kind of person, not a lesser kind of person. And where will it end? Once Downs is gone, and my heart breaks just at that thought, what is next? Will autism be next? Will we take to weeding out the Leonardo da Vincis, Einsteins, Alan Turings, Bill Gates, Steve Jobs, to name but a few Aspies, from our societies? Just because they think differently and struggle socially.
Why is it that society seems hell bent on eradicating these people, who are only different, not less, instead of working on ways to support and accept them? They offer our society so much. They have special talents and bring out our humanity. The less disabled people there are, the more bigots. Exposure is what educates. We need to educate people to be more accepting, more supportive, more compassionate. It could start in schools with lessons about the different kinds of people and disabilities so that when those children meet disabled people, they see the people not the disability. When you meet someone like my daughter or her friends, you can’t help but admire and be inspired by them. I fear for a world without them.