"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 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.
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.
I see your profile picture. That’s Johnny Cash. My hero too. Arrested seven times. Smuggled 668 amphetamines across the Mexican border in 1965. Took every drug there was and drank like I did. Cheated on his first wife. Slept with more woman than I ever did. Hit bottom in a cave in Tennessee in 1968 trying to crawl off and die. And then he got up. He got clean. He spent the rest of his life singing for prisoners and addicts and the people the country threw away because he knew he was one of them.
That was the whole point of the Man in Black. He wore it for the poor and the beaten down. He wore it for the prisoner who has long paid for his crime. He wore it for the ones who never heard a word of Jesus. He wore it for the addicted and the dying. He wore it as a standing witness that no one is past saving.
You picked his picture. You did not pick his message. Try listening to the words.
Glorification? There was zero glory in my addiction. It was truly the most excruciatingly humiliating and degrading experience you could possibly imagine. I wanted to commit suicide almost daliy, but didn’t have the courage for even that. Instead I’d reach for the pipe or the bottle. The cowards way out. The guilt. The shame. The hurt. The absolute misery of it. Yet here I am. And I am not alone. There are millions upon millions of us. We don’t all agree on politics or people or who we root for on Sunday. But we all have the shared experience of walking through that fire and surviving. I chose to live. That’s not a joke.
i don’t think most people can be fully prepared for the extreme edge cases of parenting and it is unreasonable to demand that people only become parents if they’re capable of dealing with these extremes.
i once read a story about a family with a psychopathic elementary schooler. they had to put a lock on the kid’s room to use at night bc she was caught attempting to murder both of her younger siblings. i do not feel prepared to have a child who attempts to murder my other children.
i knew a family growing up who had a severely disabled son. once he reached puberty he became bigger than both of his parents and they could no longer take care of him bc he would flail around and hit them. i don’t feel prepared to take care of a person who has the same body movements as my infant, but is 6’2” and 220lbs.
it is reasonable for parents to say “sorry we know that we can’t deal with a severely disabled kid, and don’t feel comfortable signing our other kids up for that responsibility after we die, and in our worldview an abortion at 11 weeks is sad but acceptable.”
If I were pregnant and informed that my fetus had Down syndrome I would absolutely abort. No amount of social media romanticizing of profound disability would change my mind. Contrary to popular opinion, you need more than love to care for a disabled child.
@virgoferreum World Cup, 250th Bday, Olympics.
We could have showcased how amazing (albeit very imperfect) this country is. Instead we get this. I will never forgive anyone who voted for him this time around. Fucking morons who all need to go die.
The book TED TALKS depicts how TED developed to what it is today. A decision their team made early on is allowing the talks to be posted online bc they realized the internet could make the talks popular, increase brand awareness, and make people want to attend TED even more.
Coming from a former crack and opiate addict: you can't humiliate or beat down Hunter Biden. He's already done that to himself, so don't waste your time. He beat the odds. He can only go up. He's a role model for sobriety.
The Pope is a great example of the idea that cruelty is actually dumb and that kindness and openness come from intelligence. A great juxtaposition to the (techno)fascists of our time. It takes a mind to create a better world, it takes zero to destroy it.
The grocery store problem is actually a perfect argument for walkable cities, not against them.
When you rely on driving, the store becomes a logistical burden. You’re forced to shop in bulk, hunt for parking for 20 minutes, buy extra refrigeration, and meticulously plan weeks of meals to minimize the number of times you have to endure that trip.
When you live in a walkable neighborhood, that friction disappears. I used to live walking distance from a market, and we stopped planning meals entirely. It became an experience: we’d wake up, decide what we were in the mood for, and walk over to pick up fresh ingredients for dinner that night.
A 10 minute stroll to get fresh ingredients is just better living.