10 ms·

How many people I know got hit by a car and had their life ruined horribly. Or a bad surgery. Things totally out of their control. We need to see disability as

• justinator 3y ago
  I do share your dream - perhaps it's just empathy? Maybe a good start is to believe people who tell us they're suffering, even if what they're suffering from isn't obvious and physical.
  • Justsignedup 3y ago
    My fiance had intercranial hypertension. Which is a complex way of saying "we don't know the root cause of why your spinal fluid is causing so much pressure in your head that you want to take a ice pick and poke a hole in it!" which also decreases EVERYTHING due to brain pressure, so more tired, less ability to think, less sensitive to all senses, less emotional control (especially because you're in constant pain / fear of sudden motions causing a lot of pain). Hard to explain to people that she's not just lazy. Thankfully a relatively easy procedure helped and now she's on the road to a slow recovery. Edit: Maybe it is just empathy. It is hard to see my tax money going towards turning brown kids into skeletons, and not making people who's life already sucks suck a lot less.
    • folkrav 3y ago
      > Which is a complex way of saying "we don't know the root cause of why [...]" A thing a lot of people don't seem to be aware about modern medicine. We can treat many things, we know a whole lot more than we used to, but a lot of this knowledge is often incomplete. Many of the body's systems are very badly understood. Treatment for most of those issues is symptom management more than anything else.
      • SoftTalker 3y ago
        This is true. We know experimentally that certain drugs are helpful for certain symptoms. In some cases we have some idea of why they work, but far more often than you might think, it's a case of "we know it works but really don't know why."
    • 226_ebro_treaty 3y ago
      Hi, this was enlightening. I'm a dude who has IIH myself for now almost half a decade and I was at no point told this could reduce my cognitive abilities. I take Diamox just in case (to reduce the intracranial fluid). It was a heering experience to get this diagnosed. One day all of a sudden my head started hurting and didn't stop, for months. But I had no other symptoms so doctors didn't take me seriously and my neurologist appointment was several months AFTER the onset of the symptoms (yes, months!). That was until I accidentally went to an ER ophthalmologist who saw my optic eye nerves and went holy smokes. I went through so much pain. All of this at a very young age. I developed severe anxiety and depression. I haven't done well academically speaking compared to my peers. I feel shitty about this everyday, since all of my friends are better off than me. I'm on HN but not in IT (I am inept at programming, tried several times, I am just not capable of it), but various friends of mine are in IT and make 5x my salary and it makes me feel worthless, because they enjoy life at a different level than I do because of their income. Nicer homes, cars, stability in finances, etc... It makes me feel like I'm just not worthy of life because hey, if they can make it, why can't I? I am supposidly as capable as they are... right? Thank you for making me aware I have an illness that can make me a bit less capable compared to my peers. I'm going to use this to be less harsh on myself and hopefuly find something in which I find myself better off one day within my own limitations. Thank you.
      • petabytes 3y ago
        I've had something so very similar. At one point I started having a lot of 'pressure' headaches after coming of Zoloft. It lasted for about 4 months. Just constant throbbing pain in the temples, and prevented me from doing critical thinking or working on my software projects. It was a horrible brain fog that basically crippled me mentally. I could do physical labor fine, but anything requiring me to use mental skill just left me sitting there like I was brain dead. After 4 months I went to the ER, got a MRI scan, went to a neurologist, and none of them could figure it out other than say it's because of anxiety. They put me on some blood pressure medication, and it seemed to mostly go away over a few months. I still have some headaches with the same type of pain but not lasting all day.
        • 3y ago
    • mptest 3y ago
      It's empathy, but also literally the smarter/cheaper/more humane way to do healthcare, free at point of service. An ounce of prevention vs a pound of cure. what really makes me see red is the fact that how we do healthcare is worse, more expensive, and less helpful than were it given to all, and STILL, people vote against universal health care. The only benefit to our system as yet is its ability to enrich a few rent seeking billionaires in the middle of us and our doctors. But because crab in a bucket Billy Joe in rural kansas "don't wanna pay for sum un elses helfcare". Evil, stupid, individualistic self harming fucking animals we are in the US. Barbarians to let our citizens in the richest country in the world go bankrupt because they got sick. Evil.
  • javajosh 3y ago
    >perhaps it's just empathy Any system can be hacked, including empathy. We call it "fraud" and unfortunately it seems that the number of humans who can keep two concepts in their head at the same time are vanishingly rare. So you end up with a useless "empathy vs fraud" debate repeated endlessly, roughly corresponding to the left and the right, and it doesn't go anywhere. Of course, what we need is a synthesis. The left needs to be more attuned to fraud that targets empathy, and the right needs to stop using the risk of fraud as an excuse to do nothing.
    • kayodelycaon 3y ago
      Unfortunately, "risk of fraud" is a cover for the belief that giving their money to people who haven't worked as hard as they have is theft. Many want to decide who deserves their money more than themselves. Being poor or disabled is effectively a character flaw.
      • javajosh 3y ago
        Another example of the fundamental attribution error on the right. In the same way, many on the left believe that having money means that you've stolen it and don't deserve it. So it cuts both ways.
        • mptest 3y ago
          Delusional centrism. One side : use our immense wealth as the richest nation on earth to provide basic services to all citizens by maybe taxing billionaires so they only have 1/10 b instead of 100. Other side: if you're poor, it's your fault. Get fucked. Laughable you can consider those two positions in any way comparable or equitable. Absolutely silly the enlightened centrism I'm seeing here. Gross and dishonest to even pretend like there's more than one viable non ecology destroying, democracy preserving political position in the us. Stop obsessing over what marxists think of profit, consider what they want to do with the wealth they redistribute. Make all our lives better for literally zero quality in life change for the rich who we'd tax. Tell me who's going to have any discernible decrease in quality of life if wealth was capped at 1b or 10 vs infinite and I'll call you a silly little child.
  • dfxm12 3y ago
    Sharing someone else's dream is empathy. Wanting people to be treated with dignity is just plain decency. The issues the parent poster brings up are policy choices. I think it is good to believe people when they say they are suffering, but a better start is to vote for folks who are willing to treat people like people.
  • AlgorithmicTime 3y ago
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• jnovek 3y ago
  It's not even pain-oriented. It's visibility-oriented. I deal with chronic migraine and it's extremely difficult to get on SSDI for that disorder (unless it is secondary to something more visible, like a TBI). Other invisible chronic pain conditions (e.g. fibromyalgia) are similarly dismissed.
  • irrational 3y ago
    Or diagnosed as something they clearly are not, like depression. There are doctors who are willing and interested in doing the necessary investigative work to figure out what is going on, but they are an extremely small minority.
    • jnovek 3y ago
      A bit of a tangent. My experience suggests that the transactional nature of modern medicine is part of what makes these types of investigations so hard. A doctor will be booked solid all day without time to reflect or investigate and that really only works with one-off problems. A chronic condition is not transactional, it's narrative. Someone needs to manage that narrative and mine it for insights. The only way the American medicine system was eventually able to help me was after I started managing my own narrative, but that has challenges for most people -- especially when experiencing reduced functionality due to disability.
      • concomitant 3y ago
        I’m not sure transactional is the right word. The problem you are identifying is physician bandwidth, or more fundamentally, insufficient physician supply to meet medical demand, which leads to lower quality care.
        • ska 3y ago
          That doesn't sound quite right to me. There is a lack of physicians, especially family/general, which makes everything harder. But that doesn't nearly account for everything. It is also true that the system is set up very transactionally, and that this makes it difficult to address many chronic issues as well as they could be. If you are lucky, you have an involved general practitioner who has a long history with you, good notes, and time to get into difficult analysis. For many people currently this is a pipe dream. Hell, many people are reliant on ER for basic care - a system that is fundamentally incompatible with this sort of baseline and evaluation.
• cogman10 3y ago
  Yup. I have a child with autism. The American system is cruel beyond imagination. To qualify them for social security and Medicaid I have to leave them impoverished. They can't have more than $2k worth of assets in their name. Instead it's a complex lawyer game of trusts to give my child any sort of inheritance. Yet they are basically guaranteed to end up in a group home (Even though I own my own home) because a caretaker after I go is unlikely. Further, what the trust can pay for is things not covered by Medicare and SS. So housing and food are limited to what the government would pay for. And then there's the concern of how this all plays out if I get dementia or disability which requires substantial finances. There's a reason people with autism tend to end up homeless.
  • wing-_-nuts 3y ago
    You should also look into an able account. Your son can have up to 100k in assets invested in what's basically a 529 for people with disabilities. It can go towards housing and food. Get them on snap as well. Every little bit helps.
    • cogman10 3y ago
      They aren't very old, so whether or not an able account is a good idea will depend on if they can manage money as an adult. The issue with able accounts is they are under the sole control of the account holder with few checks in place. Further, crossing that 100k line really sucks. If they let the funds ride and they appreciate past that level, they can lose their qualifications for Medicare/SS. For now, there's no rush, but it's something I've considered.
      • zie 3y ago
        As you approach $100k in assets, you get into special needs trusts.
        • cogman10 3y ago
          Right, but what happens when I die and there's 90k in the account? In 2->5 years, you'll need to start rolling money into the SNT, yet the only person that can do that is my kid. What if they don't have the wherewithal to know they have to do that? Able works if my kid can make ok financial decisions. It's a bad idea if they can't.
• deleted 3y ago
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• wing-_-nuts 3y ago
  >The American disability system is basically proving (very painfully) that life is barely livable to get scraps of help. Like below poverty levels. Yep, SSI disability is a system designed to keep you in poverty. The current max benefit is a little more than $900 / mo. That's basically unlivable unless you also happen to have section 8 housing, which when I asked, had such a huge waitlist it was unusable. $900 / month is certainly not enough to have any sort of dignified life. It's a grim existence punctuated by constant worry over every purchase. I was on it from 18 to my mid 20's. Thankfully voc rehab helped me scrounge enough grants and scholarships together to pay for me to get a CS degree in '08. I've done quite well for myself since, but it's been a long road.
  • mrguyorama 3y ago
    Also, the second you have slightly more than pocket cash to your name, all your disability and SSI type benefits go away. You cannot work yourself out of disability, because getting a job that can't exclusively pay for all your needs will still kill your benefits, leaving you worse off than the horrid poverty of exclusively relying on the government. So many people in America who are on government benefits for life would LOVE to work odd jobs or part time and contribute to the economy and buy like an xbox or something but they cannot, because they would then be kicked out of their housing program. It's absurd. Then these people on fixed, abysmal incomes are preyed upon by an entire industry who exists to skim off fees from the poor for everything from cashing checks, to hounding them for debts, to things like Dollar Tree where you can pay double the unit rate to buy a small portion of a normal product.
    • dingnuts 3y ago
      >to things like Dollar Tree where you can pay double the unit rate to buy a small portion of a normal product. It seems like you're implying that Dollar Tree is unethical for putting forward an investment in order to take advantage of economies of scale and then paying for overhead, shipping, and retail space to sell their goods at a profit. What do you propose as an alternative to this? Should these goods be taken from those who are able to produce them at a wage set by the government and then distributed to those who need them, as prescribed by SSI, after nationalizing Dollar Tree and its ilk? How will the amount that the producers are owed for their labor be determined, or does this even matter? Or maybe if this kind of discount store is immoral, maybe it should be banned. Are you suggesting that the customers of Dollar Tree would be better off if they simply went without whatever wares Dollar Tree has? Or that individual consumers should somehow gain access to the economies of scale that arise with being able to afford, eg, an entire container ship full of junk coming from east Asia?
• bannedbybros 3y ago
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• doctorpangloss 3y ago
  I totally agree with you. > We need to see disability as a cost to society we must pay Nonparticipating Product Hunting lifehacking hustlebros don't see things that way. They are the worst voters: they don't care about other people's problems and they don't care about problems that are even likely to affect them personally. They only care about the now. ACA enabled nonparticipation. 18-26 year olds got insurance and checked out. Why do you think Republicans supported it? It got passed but it wasn't radical. That's the point. > My dream is to see this sometime in my lifetime. Make the radical thing happen by picking a side. If you feel strongly about this, align with something that activists have been advocating for for decades instead of "pain oriented policy" or something idiosyncratic like that. You have way more agency than you think.
• agentultra 3y ago
  The Canadian system for disability isn't much better... about the same. I grew up as a child of a single parent who was physically disabled and unable to work. I had to hold a job down on top of school from the beginning of high school onward. My grades suffered terribly and I couldn't get into university. My parent has been dependent on us our whole lives since then: poverty is forced on people in these situations and it becomes a vicious cycle. The Canadian system has been systematically dismantled by the conservative movements for decades. Long term care was privatized and has been in a slow decline. I've been writing our ministers here for years urging them with solutions to fix the system. Meanwhile my Nan in her 90's, living with Type 1 diabetes, had to go hungry during the pandemic when they couldn't get workers who understood her dietary needs to prepare food she could actually eat. It's been a huge drain on her health in these years of her life and has left a terrible mark. Definitely worth advocating for and joining movements to push for social programs and human rights. When everyone's quality of life improves so many other things are raised up with it.
  • squarepizza 3y ago
    Sorry to hear about your hardships and thank you for sharing them.
• jseliger 3y ago
  How many people I know got hit by a car Building our entire society and physical space around cars is a poor choice, or set of choices: https://jakeseliger.com/2019/12/16/maybe-cars-are-just-really-bad-but-theyre-normal-so-we-dont-pay-attention-to-how-bad/ https://jakeseliger.com/2019/12/16/maybe-cars-are-just-reall...
  • mgfist 3y ago
    True as it may be, it's completely besides the point.
  • ska 3y ago
    Not really relevant to the topic. Replace "hit by a car" with any other unexpected and life-changing illness or accident, and the point remains.
• ianburrell 3y ago
  There are a lot of disabilities that are in the brain that can’t be helped with exercise. Bit by tick and get Lyme disease. Get virus and get chronic fatigue syndrome. Get hit on head and get TBI. Don’t even know what causes fibromyalgia. I have chronic vestibular migraine, which means dizziness and fatigue, but can work most days.
  • heurist 3y ago
    I have a sporadically-debilitating chronic disease and can't imagine how life would possibly work for me if I was not working a flexible office job.
• blondie9x 3y ago
  How do you reconcile this view with overeating and obesity, drug abuse and consequential mental illness, smoking and lung cancer, etc?
• munificent 3y ago
  > We need to see disability as a cost to society we must pay, not a failure of individuals which is more or less what were treating it. You frame this as a binary choice, but it's clearly both. I understand the desire to destigmatize and focus on systemic problems. But I really hate when health issues are framed as only societal/systemic problems. Doing so is factually incorrect and worse, robs individuals of their sense of agency. One of the main failure modes I see of progressivism (which I am otherwise happily a member of) is treating all problem's as society's fault. And then progressives wonnder why they feel so dispirited and defeated all the time. Maybe it's because we adopted a worldview that gives us no sense of agency over our own lives? (Of course, one of the well known failure modes of conservatism is blaming individuals for everything.) The right answer is that it's both. Like the serenity prayer says, do the stuff you can and accept the stuff you can't. Both are equally important.