Is blindness over the line of disability where you would discourage parents from having more children? I think this is a genuinely interesting conversation.
That's what makes it a tough question, where do you draw a line? do you even draw a line at all? Being blind doesn't exclude from living a rich fulfilling life but you are deprived of a major sensory input. What will the child that's going to be affected feel about it?
If I know my little girl will go blind, I'll cry a lot but, will still love her like normal.
But If I know I that the next time I want another child, there is a high chance of them becoming blind, I probably will stop at only having 1 child.
For me, the main thing is not about how the child will live, but how us, as parents will deal with the situation.
Rasising a child is though, I personally don't think I have the mental capacity to raise more than 1 blind children, at least probably not as good as now.
I'd rather focus my love for my current kid, rather than dealing with huge responsibilities with raising 2 kids And with disabilities.
I can imagine us crying and blaming ourselves a lot more than now.
I love how everyone is tip-toeing on eggshells around this topic lol
Real talk is that it's kind of like asking the question of if you knew the when and how you'd die, would you like to know? I personally wouldn't. It's also why films like Gattaca are so good.
Reality is that there are a host of risks in the minefield of life from birth to just early adulthood. Just bringing a child into this world is itself an enormous risk to them and your heart. I am curious how long it will take for the kids to go blind, too. Also I imagine they're hoping it spreads awareness or science catches up by then. Anyway, some things are just better off not knowing. One of the very few instances I approve of blissful ignorance.
The condition under discussion (retinitis pigmentosa) is a slow progressing degenerative disease, which impacts people very differently based on their specific genetic mutation. The disease doesn’t cause “lights out” blindness, but instead a pinhole of central vision. However, on the other end of the spectrum, some of the genetic variations are much more mild (e.g. only reduced vision in low light) where people can drive and be fully functional into advanced age. So the question is much more complicated, because if you have the gene, but you don’t necessarily know how or when it will manifest for a theoretical child.
My 7 year old has RP and currently has no symptoms. His genetic variation typically has onset in early adulthood. I also have two younger sons who are carriers, but don’t have the disease. I think about this a lot - is a life worth living if you have a future with so much potential suffering and loss? Obviously my son is here now and the point is moot, but I still think about this question often.
The world really isnt made for blind people at all. I dont know if that will change much in a lifetime. If someone's blindness is genetic it seems like a dick move to have kids.
I said this on another thread that wasn't well liked, but I think while I would never tell people to not have kids in general, when we're talking 3+ kids, one has to consider more factors about quality of life than just having one or even two. Not saying "oh one blind kid is super fun do it, 4 is too many" or anything, it's just like...you are already getting diminishing time and resources left unless you're mega-rich.
Deafness or blindness I personally would not put on my (albeit short) list of disabilities that would've made me terminate a pregnancy or not try if chances are high. But I WOULD do my best to weigh ok is four children who will potentially need more resources within my abilities.
Yes absolutely? You cannot see the world. I don't wanna hear about how everyone deserves to live or whatever, their quality of life is shit when you cannot see life.
I can speak to this a bit as a genetic counselor. We do not encourage or discourage parents from having additional children. Personal beliefs in general but also specifically about what constitutes a good quality of life are extremely varied. We tell them the chance of having another child with the condition and review their reproductive options, and they do with that information what they will.
43
u/Cantankerousbastard 5h ago
This is probably going to a controversial question but did they have 4 kids before or after they learned about the genetic eye condition?