People are dying waiting for disability, and I may be one

Since I started posting and making videos (which I’m now too symptomatic to do) about struggling with disability and my long fight for Social Security Disability Income (SSDI), one of the most heartbreaking things has been all the responses of people just like me, out there, isolated, alone, suffering, running out of hope. The worst part of it is, as my situation continues to deteriorate year after year through this struggle, I’m so decompensated I can no longer bring myself to respond or even post at all. My symptoms and poverty overwhelm my life to the point where I can barely take care of myself. I no longer feel I have a shared reality with anyone I know, and without that shared reality there can’t be meaningful connection.

Here’s an article from the Washington Post discussing the 10,000 people who died in 2016 stuck in this same backlog of disability cases.

Here’s another article from the Washington Post written by someone who lost everything waiting for disability.

This second article details what I’m going through right now. It’s been almost four years since I first applied for disability. I haven’t worked. I have sold my house, furniture, appliances, and almost all my personal possessions of any value I can survive without. Soon this website will go away; it’s up for renewal and I obviously can’t afford it any longer.

It’s terrifying and exhausting to be at the end of my savings, the end of everything of value, and still have no idea when I will get my day in district court or what will come of it. I have the best possible SSDI lawyer for my case—lawyers that work for a portion of the back benefits, so if I don’t get paid he doesn’t—and he tells me we have drawn the best possible judge to hear my case, but there is no way to know when the court date will be set. In the meantime I have to scramble to sell anything that I can of any value in order to pay for my car insurance and upkeep and gas. Because I live seven miles from the nearest grocery store, and much further from where I get mental health treatment and medication, the loss of that car would mean slow excruciating death.

One of the worst parts of this is not being able to talk to anyone I know. We don’t have anything like a shared reality and all too often people are in a hurry to give advice about a situation they don’t live with and know nothing about, which has gone from annoying to infuriating and insulting and frustrating. Over all these years, I haven’t been sitting around doing nothing. I have been working with therapists and social workers and institutions to apply for every conceivable benefit to help me get by. I get food stamps, but don’t qualify for Medicaid, SSI, or housing because the money I have—all that exists for me to live on for the rest of my life—exceeds (but only just!) the limit for cash on hand for those services. By the time I am below that limit and apply again, those applications will also take months or several years, during which time I will definitely run out of money. Meanwhile I’ve been waiting for four miserable years trying to spend as little as possible, doing without things when they break, fearing something really expensively disastrous will happen to wipe me out.

It feels like getting saddled with a heavy rock, and then another, and another, and another, continually for ages. I’m increasingly crushed and breathless under the burden, scrambling to find any kind of way of surviving. Food stamps don’t cover personal hygiene items and the local food bank doesn’t either. I’ve been looking unsuccessfully into other organizations to try to find those things, but even that isn’t going to do much to save me. There are a few places that I’m looking into to apply for gas vouchers. Yet still, it’s car insurance and upkeep, taxes and registration that are the huge expense, and though I’ve done everything I can there, there’s not much that can be done and still keep that car safe and functional.

One thing I hate most about talking about this with other people is their suggestions for jobs. As if I just haven’t thought of the right thing. It’s invalidating to me that I can’t get across that it isn’t that I need a particular special job: I am too disabled to sustain gainful employment. I may from time to time be able to accomplish some things, but that’s hardly the same as doing that consistently 40 hours a week 52 weeks a year. Someone in a wheelchair may me able to get up enough to transfer from the wheelchair to a car or toilet seat with great effort, but that doesn’t mean they’re able to walk everywhere. That’s bullshit.

I’m tired of suggestions of work when the basic problem is that I can’t work and I’m tired of explaining it. If I could work, I would. No one would endure this terrifying, humiliating, drawn-out, draining, psychologically and fiscally bankrupting process of fighting for SSDI for four years if they could work. Even if I succeed in getting these benefits, I will still be living in poverty and have to get subsidized housing and Medicaid—but I will be living.

The real trick is surviving until I get there.

Do you really want to help? I understand that advice-giving usually is triggered by discomfort on the part of the person listening to a predicament, but I can offer much smarter ways to help me.

  1. Listen and validate. I’ve heard ‘listening is loving’ and also ‘listening is justice.’ In this case, it’s kindness and love for you to be just reading these words and validating that this struggle is real.
  2. Please don’t ask invasive questions about my disabilities and how their symptoms impact me and my daily life and my ability to work, nor invasive questions about my living situation or how it got this way. I already have to sacrifice my psychological, bodily, financial, and every other kind of privacy every single time I apply for benefits. Privacy is a privilege one doesn’t realize one has until falling down as far as I have, where I now have to provide excessive personal documentation as proof in order to try to get my basic needs met. I would like at least some people and places in my life to respect my privacy and not make me feel like I must prove who and what I am. It’s humiliating, and in a way I think most people don’t consider when dealing with someone who is poor and disabled, to ask what may feel like harmless questions to the questioner but are loaded and extremely overdone to the questioned. The fact that I share a lot of my struggle isn’t an invitation for you to use me as a teaching tool or to enlighten you about my entire experience. I’m exhausted just trying to survive. There are plenty of websites and articles and videos out there for you to educate yourself, done by brave people who share my plight.
  3. Have patience with my struggle. Understand that almost all of my time now is split between managing overwhelming symptoms that are exacerbated to an unconscionable degree by my living situation and money terror. My first priority is to take care of myself. I now find it almost unbearably draining, not to mention risky, to respond even to most of my friends. I’m engaged in a humiliating, painfully vulnerable fight for my life that has worsened over the years, and I’m keenly aware that I don’t have the resources to maintain friendships or reciprocate when I can’t even meet my own basic needs. I also can’t protect myself, and as an introvert talking to other people is draining energy I need to survive and deal with painful disabilities.
  4. I have a wishlist on Amazon made up of household essentials I’m in dire need of that food stamps don’t cover, mainly personal hygiene and cleaning items, but also Amazon gift cards I can save and use to buy these and other daily necessities.
  5. If you do choose to avail yourself of this and gift me the things I need, thank you. Please, I beg you, take care to have self-awareness! Take a deep look at yourself before you do. I have good reasons for not asking for help or favors; I have had traumatically abusive experiences the majority of the time people have offered me help. The friendship changes. The worst changes come from those who insist that they won’t, and deny that they’re scrutinizing my behavior and spending habits and life more so afterward—people without the self-awareness to admit that their charity was conditional. I’m not talking about an expectation of reciprocation, but after accepting charity I often find myself in a position where the giver becomes intolerant of my setting boundaries with them or telling them ‘no’ and it snowballs downhill until I have to go no contact. I have neither the energy nor the patience for any assistance that comes with strings of any kind. I understand that for the vast majority of these bad experiences I had, it was done unconsciously out of discomfort for my suffering and need, but that only makes it worse. Anything someone is doing or saying or expecting that one is in denial about can’t possibly ever change. No matter how good the intentions, charity can become toxic, a form of abuse and control, even without the knowledge of the charitable. Us recipients sure know what that feels like, though.
  6. Consider buying or making an offer on the last few things I’m selling. Currently I have listed an excellent condition Ensoniq TS-12 synthesizer with stand on Reverb.com and an enormous statue of Figment the dragon from Disney’s Epcot Center on eBay. (Enormous thanks to my dear friend Amanda for helping me deal with eBay as it’s more than I can handle right now.) I’m down to the most difficult and unwieldy things to sell, hence the hugeness of the pieces and large shipping fees; I’ve failed to find local homes for these. If you know anyone who might be interested please do pass along the links! In the coming weeks I’ll be listing a few lots of semiprecious gems and pewter figurines, and I will share links to those as well if I’m having difficulty selling.
  7. Spread the word about the thousands of disabled people in the US suffering, going broke and homeless, unable to afford proper care, and even dying through years of waiting for disability. Start conversations. I’m too long-winded and tired for the age of tweets and hashtags. Find better ways to write and talk about what you’ve learned here and make some noise. Most of us are too tired, frightened, humiliated, and disempowered in every way to fight when it’s a fight every day just to survive and live with inadequately treated disabilities exacerbated by our living conditions and lack of resources to meet our basic needs. (If you’re really ambitious and so inclined you can write to your political representatives, or news outlets, or hell, ask Last Week Tonight with John Oliver to do a deep dive on Social Security Disability corruption like they did with immigration courts recently.) Use the privilege of the energy and time I don’t have anymore to advocate for those of us who can’t. Enlighten one other person about this fucked-up system. To me the most important thing about this is the fact that anyone, regardless of class, race, creed, family, nationality, age, gender, sexuality, physical fitness, and fastidiousness with personal health and safety, can at any time without warning become to disabled to work. We come from all walks of life. What is happening to me could happen to anyone, anywhere, no matter how safe you think you are, or your loved ones. Disability is not our fault. Do we become untermenschen because we cannot work? How fragile, then, is your worth to this society and your fellow humans? Are you only worth what someone will pay for you? Food for thought.

Thank you for reading. I’ll eventually set up something like a free Blogspot (assuming I’m still alive) if I can muster more words to say in the future. This site will still be here a while and I will retain a backup of it in case there will ever be a better life for me in the future.

I won’t hold my breath.

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