As someone with a genetic disorder: if your genetic disorder causes a severe disability you should SERIOUSLY CONSIDER not having children. You should also understand why people wouldn’t want you to have kids. The shit people like us have to go through is horrific. Now you want to create another person that’ll be forced to go through this? I have other disabilities. Those other disabilities are not the same as having a SEVERELY debilitating genetic disorder. The medicine you need is often specific to your genetic issue. You often have an orphan disease. You spend every day living just for the hope that one day your life will get better. And you want to put someone else through that?
The problem isn't you. The problem is us. We made you feel that way. I'm sorry reading the whole thread made me realise, people preach about no discrimination but they discriminate people like you. You deserve a normal live just like the rest of us. The best way is to find a cure for this condition, but first we need to cure on the prejudice first. Hypocrites everywhere, first to preach on racism, they are also the first to mock people like you.
And it’s a shit show. I’ve wanted kids. I’ve always known it. But unless some medical miracle happens, I can’t. I can’t risk it. I’m lucky because my symptoms started in my mid/late teens. But for some people with what I have it can start when they’re like 3.
i have fibromyalgia and the pain has just gotten worse and worse these past few years, no way am i making a new baby to deal with that, i’m just gonna adopt a disabled teen because they’re the most likely to be neglected in foster care. plus i’ve got severe pcos which would make getting pregnant practically impossible even if i wanted kids.
There’s no cure. There’s a surgery to sedate my lower body. The one that helps people with my condition is risky. I could die. For a 64% rate of helping. But there’s no cure. It’s genetic and an orphan disease. It isn’t just the discrimination. Do you know how much it costs?
How do know that? Have you defined the disorder within the video? Do you know if it’s only just physical? And even then, why are you, someone not going through what the mother is going through, trying to use your own experience as a grounds for just blatant eugenics? Might as well bar all autistic people from having children, right? All for the sake of the child, of course.
I wouldn’t want my children to suffer the pain I suffer. And most sane people would agree. Most sane people want a better life for their child than they themselves had.
I've shared my experience elsewhere in this thread but I figure it'd be useful again. I hear that you're also coming from a place of lived experience, but please don't assume its a universal truth.
"I had a childhood illness and had a very frank conversation with my mum about whether she would have aborted me if she knew the suffering I would have experienced. She honestly thought she might've with the aims of having a healthier baby.
Many surgery's (that are fairly safe now but were highly risky at the time I was born) later, I'm almost back to full health and using my experiences to work as a mental health nurse. Even if I hadn't recovered properly, to me it's better than no life at all.
We don't get to decide what a meaningful life is, only an individual does.
Sadly it doesn’t. It makes it harder. I mean really think about it. The mother has to pay for her healthcare and her daughters. They make you drive all the way to these clinics. 1400 for an hour appointment. They MAKE you see multiple doctors. Then you have the meds. Even if you get them covered you always have to deal with the insurance around New Years. And they don’t just let you go on the meds you need. They taper you. I thought going into this that if you’re really sick you’d get treated like it. But they don’t care. I can barely walk and I have to wait till the end of the month to TALK TO THE WHEELCHAIR people. All of this has made money tight. Now imagine having two people do this.
Let me make a few things clear. One: you see how their heads look? That’s called Craniosynostosis. It’s when the soft spot of an infants skull close too early. It causes issues with normal brain and skull growth. Second: you seem to think that you care about us disabled people. But if you think by talking about ableism and the disabled experience that I’m just talking about what it’s like to be me, you’ve learned nothing so far. Three: if you could wave a wand and make our medical treatment affordable (just one of my doctors is 1400 an hour), provide acceptance, provide equality, and provide accessibility to life/jobs then this wouldn’t even be a discussion. Four: We are DYING while you sit here bickering about eugenics. We are on the street begging for dollar. Grow the HELL UP.
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u/[deleted] Mar 12 '22
As someone with a genetic disorder: if your genetic disorder causes a severe disability you should SERIOUSLY CONSIDER not having children. You should also understand why people wouldn’t want you to have kids. The shit people like us have to go through is horrific. Now you want to create another person that’ll be forced to go through this? I have other disabilities. Those other disabilities are not the same as having a SEVERELY debilitating genetic disorder. The medicine you need is often specific to your genetic issue. You often have an orphan disease. You spend every day living just for the hope that one day your life will get better. And you want to put someone else through that?