NOBODY HAS FIGURED out yet why some people get an additional copy of their twenty-first chromosome and others don’t.
It’s one of many gaps in understanding that abound when Down Syndrome (DS for short) is discussed. Fortunately, we can clear up some of the other gaps in understanding with some basic facts … but only if we can get our turn to use the megaphone.
I am the lucky father of a beautiful little girl called Lasairíona, who – in addition to big blue eyes, wavy brown hair and impeccable dress sense – has that extra chromosome.
She is not a “Downs” or a DS person – she is a person with DS. This distinction is absolutely critical, especially in relation to the debate you’ve most likely heard DS mentioned in lately.
In the discussions around the Eighth Amendment, DS has been mentioned frequently by those who wish to maintain the status quo, and images of children with DS have been shared widely in this context. When friends and family members take to Google to learn more about DS, the search results are crowded with anti-abortion content rather than practical lifestyle information.
The implication is that greater access to abortion, in combination with the availability of pre-natal screenings, will surely lead to the elimination of people with DS and other detectable conditions.
There is a further implication that those who would like to keep the Eighth Amendment are valuable allies of people with DS and their families.
I take issue with this.
The Eighth Amendment did not save my daughter’s life. The idea of her being exposed to voices on the radio and posters on the street declaring that she is only alive because her parents were forbidden from terminating her is heartbreaking.
She’s more likely to see a girl like her in such propaganda than she is to see a girl like her in a TV show or even working in a shop. We will have to talk to her about this when she is still too young to have to care about the politics of adults, and I cannot forgive this attack on her innocence.
‘They aren’t props in someone else’s play’
It’s important to note that the Eighth Amendment was not introduced with the protection or advancement of people with disabilities in mind and its continued existence does not govern the ethics of pre-natal screening, the availability of speech and language services, the right to marry or take a driving test, the provision of jobs and housing for adults with disabilities or the hiring of enough special needs assistants in schools. You might even go so far as to say that the Eighth has nothing to do with disability at all.
People choose not to continue pregnancies for all sorts of reasons. Emphasising those terminations requested on foot of a pre-natal diagnosis is a tactic that weaponises unhelpful “harmless and helpless” stereotypes of Down Syndrome.
This is done without a care for the self-respect of people with DS who have friendships, jobs, arguments, plans and opinions like anyone else. They aren’t props in someone else’s play.
Pre-natal screening, if handled sensitively, can be a useful learning opportunity that gives families time to process the news and is infinitely preferable to a delivery room diagnosis. The fact that many people choose not to continue with a pregnancy at this stage cannot be viewed in isolation from the schools that won’t enrol, the employers who won’t hire, the insurers who won’t insure and the people who won’t accept someone with DS.
It cannot be viewed in isolation from the critical and popular acclaim extended to comedians who mock people with disabilities behind the fig leaf of free speech. In short, it is not the only incidence of ableism in our society.
This is the crisis that people with DS and their families face – blithe, toxic, widespread ignorance about what they are capable of. We can’t change this while our stories are drowned out by the noise of someone else’s agenda.
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