#which...i know ppl who have applied for SSI and got turned down despite being A) fully blind and B) missing half their leg
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kind of a weird moment lately, where SSI, which I applied for like, at the beginning of the pandemic, just recently got back to me with a “you qualify” after years of jumping through hoops and paperwork while also juggling just...so much at once. but the thing is that we kind of gave up on me getting SSI because it was taking, you know, literal years, and the paperwork was confusing and we were like “so did I just get disqualified? what does this mean?” and now...I literally have two jobs. I���m making decent money. I’m actually going to possibly lose my state health insurance because I make more income now, so I need to find a private health/dental plan that won’t bleed me dry because neither of my jobs offer any benefits. but still, I make too much for SSI, which restricts your assets to $2,000. Like, I am not breaking into the upper or even middle crust. I’m basically doing factory and caregiver work. I also only have these jobs due to A) our local “help disabled people get jobs” program. and B) my nephew getting into a support program we applied for 2 years ago and the program giving us the option to find (we would need to find them ourselves) and hire a nurse to do all of the medical/supervision stuff I was already doing for free, or pay me to keep doing it. Plus, we found out that my nephew has, like, a number of medical issues that most nurses are not trained to handle for some reason. and i got trained by his medical team because they are about 2 hours away and that won’t cut it in an emergency. like, I’m talking “how to intubate an infant/toddler” and how to program and manage his feeding machine and sanitize the equipment and prep his blended meals and how to replace a g-tube and I kind of forget how much I do because I do it all the time, but yeah, now I’m getting paid to do it. Plus my machine management job. So...I qualify for SSI in terms of being so disabled that i cannot live on my own, or care for myself independently, or hold a job without quite a bit of support from my family. but...SSI took so long to fucking approve my application that I just got two jobs to pay my part of the rent and help out with household repairs and childcare costs and vet bills, and I just felt like I was just a burden on my family. so I got two jobs. and I’m making it work, even though it’s hard and I am honestly just super super lucky that the jobs i got fit my specific issues so well. my major issues to staying employed revolve largely around being bad with customer-facing positions, since I am autistic and not good at hiding it, which pisses people off. I miss social cues and I fuck up eye contact no matter how I do it and I dress weird and I struggle to shower regularly. plus i have a different condition that uh...makes my face look different. most people think i have some kind of transmissible sickness, but i don’t. so...machines don’t care about any of that. my family doesn’t care about any of that. and, the second biggest impediment i have is my fairly severe memory issues, and very tentative grasp of time. my inability to navigate is not an issue due to GPS and my dad/sister just driving me to work. and the “unable to work with a schedule that changes week to week” is mitigated by the fact that my new job has a very simple, set schedule. plus my dad/sister are responsible for driving me, so if i forget that i work, they will remember for me. so...I got lucky...but I can’t help but wonder where i would be if I did not have my family support, and I did not get so much help to get these jobs, and it still took SSI...I am bad with time, but I think it’s been 1-4 years. since i applied. so...where would i be with no support, struggling to live on my own, unable to hold any of the jobs i was applied for without program assistance....eventually unable to pay rent or bills or groceries...would i have simply died? if i didn’t have family to support me...i think i might have. so...mixed feelings on getting this “you qualify, take these final steps to get your SSI benefits” paperwork from SSI....
#SSI#kind of upset by this actually#like it's one thing if they turn me down flat-out and say 'no you are not disabled enough for SSI'#which...i know ppl who have applied for SSI and got turned down despite being A) fully blind and B) missing half their leg#so...#but yeah it's one thing to get turned down and go 'okay time for Plan B'#which is what we did when it was like a year in with no confirmation and we decided 'fuck it we need to look into something else'#and then a friend of my sister recommended this 'help disabled people get jobs' program#and everything fell into place from there#but...if i was still waiting on SSI...#they basically strung me along for 2-4 years#wait. i applied. around the time my nephew was born so. 2019. so yeah 4 years actually#so...honestly if SSI is fucking with you that long i recommend looking for a different program to help you#the one i got hooked up with was local#but i think most places have similar programs in place#again tho...that's only if you're capable of working. i'm fortunate that i am#like yes i'm very disabled but i can do the jobs i have#just don't ask me to drive anywhere or remember anything or live on my own#because i will get lost and i won't remember my schedule or recognize that i need to eat or shower enough#i am very prone to wandering off and getting lost like it is a major problem but i just confused easily okay#i can't help it and it's really frustrating because it's like i just get distracted for a moment or two#and then suddenly i'm all alone and everything is unfamiliar and i have no idea where i am#it's really distressing#and then you throw in habitual not eating enough and low blood pressure and the fact that i have poor circulation#and my good old habit of passing out when it's too hot or i stand up for too long or the moon is in fucking retrograde or something#the only reason i am so 'go with the flow' is because everyday is a flow. i have no idea what's happening all the time#like dad asks if i want to go grocery shopping. i say yes. get ready. get in the car. we drive for a while#at some point i forgot why i got in the car. i ask dad where we're going and he tells me. i nod#sounds good to me. grocery shopping. cool#we drive some more. i forget where we're going. we arrive at a parking lot. i don't recognize anything. i ask dad where we are
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