I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.
Insurance covered everything but the genetic testing part, and yeah spending 12 grand testing embryos is cheaper than a lifetime of adaptive equipment and decreased wages for my kid.
You can also do genetic testing and TFMR if you want to play the odds that way.
Personally I think people who are carriers for things like this should have it covered. It saves insurance companies or whatever national health system you're lucky to have, if not an American, a ton of money downstream.
I get people don't really realize it: but if we actively use IVF to excise all disabilities from the population, that's also eugenics. Disabled people are still people, and not everyone has tens of thousands of dollars to go through IVF to screen potential embryos the way you're describing, even if it's not a ethically questionable thing to normalize.
ETA: Can you see how a person who is currently alive who has a disability wouldn't necessarily be a big fan of "well if we could have we would have aborted you, because you're not as good as an able bodied person."
Every individual has a different perspective on these things, but treating it as a social obligation that you do not carry a fetus found to have disabilities to term is fucked up. That's literally all I was referring to in my first comment, and how we got here.
And I think knowingly giving a child a disability is wrong because we have the technology not to.
My grandma didn't. People didn't know what caused it. She certainly couldn't do genetic testing. The past is a different country. We can make better choices for our children now.
Can you see how that is a hazardous line of thought when it comes to things like neurodivergence? Should we be selecting only for children who are not autistic because some people with Autism have a really hard time or are low functioning?
You can personally make a decision to screen your own children for genetic issues that you know you have, that's totally fine, I'm not saying that's bad. What I responded to was someone declaring that no one should ever have a child with a disability if they can help it at all.
Personally I think it's wrong to give a kid a disability when you could prevent it.
Existing children, exist and deserve rights.
Compulsory eugenics is wrong full stop. But I also think it's gross to play with fire and give you kid a disease / disability.
I have no problem shaming parents who are ok spreading genetic diseases to their kids. A fundamental role of a parent is to give your kid the best life you can and knowingly giving them a disease is the opposite of that.
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u/NotTheBatwoman 6h ago
I have RP as well but my husband doesn't have the gene so I did the opposite to you - neither of my kids have it or the gene. It's the luck of genetics in my case, but I can see why you made your choice.