My sister was born with profound disabilities, a lot more severe than Down’s. She was non-verbal all her life. I don’t think she could even recognize our mother when she walked into a room.
Growing up around the special ed system, I was taught the standard line on children with disabilities: we should cherish their special qualities, the purity of their happiness and the innocence of their love. There is nothing wrong with them, they’re just different.
I repeated this line for years, but eventually I started to wonder if I believed any of it.
When my sister died at age 26, I figured it was time to look back over her life in full. Did she make anyone’s life better? To be blunt, I could not think of any way that she did. How could she, when she didn’t have the capacity to act in any meaningful sense.
On the other side of the ledger, she made a lot of people’s lives worse. Another member of our family was in and out of institutions for years later in life, and part of me thinks the strain of caring for my sister was too much for this person and drove them mad.
Of course people loved my sister. My parents did. But people can project love onto lots of things, the way pet owners project love onto their cats or a stalker projects love onto a celebrity. If the object of your love doesn’t know you exist and never will, is it even real? Try to answer honestly even though it’s a difficult thing to ask about a member of your own family.
I’m not trying to make a case for selective abortion. Once a life exists, we have duties toward it that can’t be shrugged off for utilitarian reasons. I just wanted to counterbalance the rosy picture being put out there.
My sister was an extreme case. Other disabled people can talk, recognize faces, and form relationships, which I assume makes things different for their families.
My only message is: It’s hard. It’s really hard. The best thing my sister did in her life was give the people around her the opportunity to show their best selves. But the reason she was able to do that was because it’s really hard.