• stefano@lemmy.world
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    10 months ago

    I’m sorry, but all civilized countries in the word offer some social assistance to people in your situation. Put together all disabled people and their families and fight for your rights.

    • LillyPip
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      10 months ago

      People have been fighting for those rights for decades. That doesn’t change the fact some people are destitute because of health issues with no way to improve their personal situation. And if I had the physical ability to organise people and fight for things, I’d have the ability to work. I’m not sure you know what ‘100% disabled’ actually means.

      • stefano@lemmy.world
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        10 months ago

        There are a lot of disabilities, so I don’t know… in my country you could have a 100% physical disability but be in your mind (quadriplegic for example), and in fact there was a person in this condition that fought the government in court and won forcing the government to legislate in his favor and others in similar conditions.

        • LillyPip
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          10 months ago

          There are a lot of disabilities, so I don’t know.

          Look, you should have stopped there.

          I don’t think you’re trying to be insensitive, but you are. Do you think I’ve been sitting on my hands saying ‘well this sucks, but I’m not doing anything about it until some random person on the internet tells me to?’

          Telling disabled people they should just try harder, and pointing out other people who you think have tried hard enough without knowing any of their personal situations is very callous. You know nothing about me, and even less about those you’re using as an example I should strive towards.

          In an effort to help you understand, in an effort towards fostering empathy, I’ll give you a quick synopsis: I fought hard for my career. My upbringing set me up for failure, but I overcame all that and built a fantastic career in software starting in 1998, despite having an 8th grade education and recovering from being kidnapped for sexual purposes.

          Within a few years of that, I was designing some of the most popular software on the planet, and was a finalist for the Apple design awards. I never thought I was a victim. Quite the opposite: everything I did was in defiance of what happened to me.

          I’ve had a severe genetic issue since birth that made everything hard that whole time. I mostly tried to ignore it, because I wasn’t going to be defined by that. I’m now in my mid 50s, and my condition has become worse steadily over the last 20 years. Nevertheless, I was married for 30 years and raised a wonderful son who is now 25. I worked my ass off, ignoring my condition, for which I said, there’s no treatment or cure. I just lived my life and got very good at being as normal as possible.

          The sicker I got (that’s how this works; the older you get, the worse it becomes), the more angry my husband got. It’s hard to deal with something that can’t be fixed. I totally understand how that’s frustrating. I didn’t want to have sex much anymore, because as my intestinal system came under attack, I felt like I had the stomach flu constantly. How horny are you when you’re having constant vomiting and diarrhoea? Every single day for years. I couldn’t eat fruit or vegetables anymore, because my body couldn’t digest it. If I eat a regular hamburger, I shit intact lettuce for days. It took me years to figure out what I could eat, and it’s not much. And eating the wrong thing leads to fainting and seizures. But I was getting flak for not eating around people, like I was trying to make them feel bad.

          So after 30 years of doing my absolute best, we divorced. I was the one who asked for it, because I felt he was miserable and I didn’t want to make him suffer for my health issues anymore (he’d made it very clear I was a drag on his life), and I didn’t ask for anything, no alimony, nothing. My life was reset as though I was the 17 year old with no history again. That’s nobody’s fault but my own. Everything had been in his name the whole time, and that’s on me for assuming our relationship would never end.

          In the five years since the divorce, while I’ve been getting progressively sicker, I’ve also lost my entire family and all my closest friends to death, and all my pets have died, too. I’ve been completely alone this whole time. But I’ve managed to deal with all these deaths and my deteriorating health, which involves constant diarrhoea and vomiting that’s like having the stomach flu every day for seven years, my mother, aunts, uncles, two best friends, and other friends, three cats, my rabbit, and my dog all dying, and my beloved son moving away.

          And during all that, I wrote a novel in an attempt to make money.

          And now I’m supposed to deal with not being able to afford food and housing when I have to spend literally five hours every day on the toilet, just wishing it would end. (eta: the next time you have a stomach flu for a couple of days or get food poisoning, think about that lasting for fucking years. That’s my life.) I’m just so very fucking tired.

          So please, tell me how I’m supposed to have a stiff upper lip and once again pick myself up by my bootstraps. I’ve already done that multiple times and I’m just done.