Amidst lots of dark and tragic stories, a bright ray on the BBC website this week: Kathleen Humberstone, a 17 year-old English girl with Down syndrome, addressed the UN in Geneva to mark World Down Syndrome Day.
Rather than reading anything I have to say, a far better use of your time would be to read what Ms. Humberstone said. You can find the full text here; if you scroll down you can listen to her speech and an eloquent talk her mother gave afterwards.
The speech is only 3 minutes 42 seconds, and the mother’s talk 5 minutes 48 seconds. It is well worth every second of your time to listen to these women. However, for those of you who don’t have the time or place to listen, I will give a few highlights here.
From Kathleen’s talk (when she refers to “testing,” she’s talking about prenatal genetic testing to detect and abort fetuses suspected to have Down syndrome):
Bonjour, Hello! I can’t believe I’m here! I’m at the UN, in Geneva! Do you know why? Because I have 47 chromosomes. That’s just crazy!! Thank you Down syndrome! I’m here to talk to you about my life and why it is worth living . . . I love everybody. I can’t help it! I hope everybody loves me. I have Down syndrome. Yes. Is that so wrong? So, why all this testing? Why? My name is Kathleen Humberstone and I love my life!!
From Kathleen’s mother’s talk:
You know that trisomy 21 happens to be one of the easiest disabilities to identify at the moment in utero. More will follow. And eventually all disabilities will be identifiable in utero. So, parents of future generations will have quite a few choices to make. Now sadly, the real downfall of people with disabilities is that we parents still have not found this unit of measurement which would enable us to quantify all they bring to society. But how on earth do you quantify something so strong, so beautiful, and yet so invisible, so intangible, and therefore so worthless, so meaningless, and so easily dismissible to most people who can’t experience it? And how can you blame them? I long for the day when we can quantify this most powerful and almost magical je ne sais quoi, because you would finally understand that our children are not a burden; disabilities are not a burden; they are everything but. I’ll tell you what the burden is. It’s a growing lack of empathy and a thick-lined cloak of altruism: “We don’t want them to suffer.” But it’s not just a burden; it’s also a threat to people like my daughter. It’s time beings-in-the-making stop being discarded solely on the ground of their predicted disabilities. Because we are also doing away with a mountain of hidden abilities. . . you know what else is so sad? A society without disabilities, without diversity, without differences, will not be any happier than the one we’ve got now. It’s an illusion.
Also see here.