I live with several chronic conditions that make it hard and perhaps impossible to work. Since February, I have been out of work due to these conditions. With all of the other scary things going on in the country, it has been surreal to go through this personal struggle while so many other lives are also falling apart. I write this to shine a light on a system that has been harmful for people for a very long time, a system that causes death, homelessness, and suicides. I write this to show that there is no 'charity' or government safety net to rely on while you wait on this horrible system.
I have worked with people with disabilities for almost 2 decades so I know how difficult the whole system is to work with. Even though I have had chronic conditions since childhood, I have been blessed to be able to work up until now for long stretches of time, but never full time. What I learned from my work with low income people with disabilities is that VERY few people do not want to work and contribute in some way. For me, not being able to work is a devastating blow to my self esteem and sense or worth. But, more than that, it means financial ruin and potential bankruptcy for myself and most people stuck navigating our archaic and torturous disability process.
The Social Security disability process usually takes years to get an approval. At the end of that process, some are left with under $800/month SSI or if you have worked enough quarters, a small amount based on what you have paid into the system. For people like me who have disabilities that have affected them all their lives, their monthly SSDI checks are usually pretty small. When I tell people this, they often bring up 'charity' as a way to help people during and after this process. Nope. There is no charity or government aid out there that acts as a true safety net. For many this process causes homelessness due to the fact that one can't survive on NO money a month. And most states have years long waits for subsidized housing for people with disabilities. There are food stamps, but food stamps often don't pay for the whole of your food bill nor do many folks qualify who are in the 'gap' of making too much to get them, but too little to pay for food.
When I applied for disability in March, I knew full well how difficult it is was. However, with multiple conditions and a lot of medical evidence, I held out hope that I would be approved. When I was notified in July that there was not enough medical evidence and I would have to go to their examiners so they could get more evidence, my heart sunk. I knew that this was a VERY bad sign because Social Security's own medical examiners are often cursory and not accurate. The first exam was with a male psychiatrist in an empty office in an empty building. I mention this because I have PTSD and that alone gave me a panic attack the instant I got to the office. He was extremely abrupt. When I asked him to speak up due to my hearing loss, he refused. He spent the entire exam turned away from me staring at his computer with a mask on firing off personal questions. I could barely hear him and was having a panic attack, but did the best I could. I left feeling invaded and dirty; like I had just been violated by someone with no warmth asking me the most personal questions about my life one can imagine.
The next month, I went to the physical exam. I knew that these were notoriously worse than the psychiatric exams, but little did I know how bad it would be. I went in and felt very sick and anxious. My pulse was taken and it was at 150 which the nurse seemed to find alarming. I then sat on a massage table for 30 minutes in excruciating pain.(due to my spinal conditions sitting in bad seating for longer than 5 minutes is horrific) The doctor came in and he also had a quiet voice. I asked him to speak up and he also refused. I tried to tell him about some of my limitations and every time I spoke, he cut me off after a few seconds. He did a few balance tests and some cursory tests with my hands and arms. I asked him about my pulse rate and he said it was nothing to worry about and slammed out of the room. In total, the appointment was 15 minutes.(at least the psychiatrist took an hour) After this appointment, I was even more upset and drove home feeling extremely despondent.
A week later, I received a denial letter that was clearly based on the last exam rather than 100's of pages of medical evidence Social Security received from my many long term providers. My primary doctor was completely appalled and told me the physical examiner said I had absolutely NO work limitations whatsoever and could even do physical labor. I looked up the doctor's reviews and saw that many other people had the same experience. I tried to complain to several sources and was either completely blown off or told there was nothing to be done. It is completely wrong that this doctor, who is being paid by our taxpayer dollars, can ruin people's lives this way. He is clearly not doing his job at all and getting paid to deny people. Additionally, it is wrong that they can base someone's ability to perform a full days work seated or standing based on a few simple tests in 5 minutes in a doctor's exam. I am appalled that this man will continue to do this to people and there is absolutely no recourse to change that. People with disabilities are often left with no recourse in systems in which there are serious and valid concerns. Furthermore, it is terrifying to complain for fear of losing future benefits and services.
When one gets a denial letter, one can either appeal the decision(which takes more than 1 year to wait for an appeal hearing before a judge), or one can re-apply and risk having the exact same thing happen at the initial level. Either way, the process can take years while one lives with no money whatsoever. Many people are currently un-housed as a result of this very inhumane system.
This denial letter and the subsequent lack of recourse(and length of time to get a positive decision) has increased my already severe anxiety and depression. I do not know how to survive or contribute to our household and we cannot live on one income. My credit card debt is growing. Mine is not a unique story. There are thousands like me out there, some on the verge of homelessness.
Right now, there is so much financial ruin that it is hard to comprehend, but for many of us, it is not a new story. Our societies' 'independent' pull yourself up by your bootstraps' mentality makes it horrible for people in with new disabilities in this situation to reach out to anyone for help. The judgment against us is strong and many question the validity of our lack of ability to work, particularly if we have invisible disabilities. There is also an unspoken taboo in 'polite' society about discussing money woes. All of this leaves us feeling extremely alone, hopeless and trapped with nowhere to turn for help. More and more people like us are thrown away and forgotten with stories unacknowledged and hidden. We are human beings who deserve to survive in a country that doesn't seem to care much whether we live or die.
