One of the hardest things about having a child with Down syndrome is un-talked about desire to remove individuals with Down syndrome from society. This post is inspired by a politician running for office in the UK. In his manifesto, he states he thinks there should be mandatory abortion for all fetus’s with Down syndrome, cerebral palsy and other genetic disabilities that can be identified in utero. Statements like this are horrifying for two reasons.
There is major misinformation out there about prenatal screening and diagnostic procedures for Down syndrome. First of all screenings are the ONLY tests that do not carry with them spontaneous abortion as a result of the test. The accuracy of these screenings range from 80 to 99.8% and can result in both false positives and false negatives.
There is no test that can 100% predict the presence or absence of Down syndrome. Amniocenteses and chorionic villus sampling bring with them a minimum risk of 1% chance of spontaneous abortion. So, since I’m an engineer we’re going to do a little math. If everyone was required to have prenatal diagnosis and approximate number of babies born worldwide is 130 Million, 1% of this number is 1.3 Million. So, just due to being required to have a diagnostic test would result in the death of 1.3 Million babies! In addition, 1 in 690 babies in the US are born with down syndrome (note the number would be even higher if they were not aborted upon a ‘positive’ diagnosis). That would be another 190 thousand babies who would not be born because they had down syndrome. So, we’d be killing 1.3 Million healthy babies, to eliminate another .2 Million people.
The thing that bothers me about this whole argument is the common view that people with disabilities are less human, less worthy than ‘typical’ people. While not everyone says it as bluntly as Geoffrey Clark does, the laws, actions of individuals say it very clearly, individuals with disability are not worthy of the same rights in life or right to life as a ‘typical’ human.
I am regularly infuriated by the social acceptance of these polices. Did you know an individual with a disability in the US can only have $2000 to their name or they lose their health insurance and SSI. The group as an unemployment rate of 75% in the US. They can be paid significantly less than minimum wage, like, $1 an hour! The sad thing is their work is considered lower than other peoples work. However, I think we can all think of jobs of where we work, that work output would be significantly improved if the person doing them was very good at doing 3 or 4 things very well. Instead of seeing this as an asset, employers look at this as a handicap, and regularly employ ‘typical’ individuals, who when asked to do a simple repetitive task, get distracted by Facebook, gossip, etc, do the job inefficiently, poorly and constantly trying to move beyond the position. To me it makes good business sense to employee individuals with the correct skill sets, regardless of a perceived ‘disability’.
Finally, a note to parents of typical children of a couple things NOT to say to someone who has a child with a disability. I’ve included some cliff notes on what you’re actually saying to the parent. The sad thing is, I’ve actually had people say this stuff to me. Note it’s not a compliment, they’re insults.
1) Wow, I would have not been able to make the same decision you did, if I knew my child had Down syndrome.
Cliff Note: If your child was my child I would have killed them, literally. People with disabilities shouldn’t live.
2) I don’t know if I could handle having a child with a disability.
Cliff Note: Your life is insanely difficult, and miserable.
