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This post was originally posted on Nerd Out of Spoons. This content is still relevant and important to our cause and by one of our authors so it’s been reposted here. It was originally posted on October 8, 2022.
I have been applying for disability benefits since May of last year when my short-term disability from my job ran out. Throughout this process, I’ve also been working on building a business around my writing, as it’s been a lifelong dream to publish books. This has created a lot of interesting aspects in my life that many disabled people don’t face. However, the restrictions on disability benefits in the US clarify that if you want to lead a good life, you want as many options as you can get. I wanted to share my experiences with the process as I got my disability hearing date earlier this week and I wanted to give hope to others who are dealing with the process along with shedding some light on how the process and limits are harmful and need change.
The System Has A Bias Against Young People
This was a lesson I knew right away. I got denied several times despite having regular seizures multiple times a day. I legally could not drive because I was having seizures too often. My neurologist prescribed seizure management workbooks that I was doing as much work on as I was on my business. I was finding my limits well under part-time hours. But I kept getting denied because I was “getting treatment for my conditions”.
Just after my third denial, I went looking for a disability lawyer. I found issues with some lawyers I talked to because of my business (which I will get into later). Then, I found my current lawyer. While we talked over my case, including my seizures and my desire to keep my business, he suspected my last appeal before going to hearing was going to get denied. He confirmed for me that because I was under the age of 55; I was likely not going to have my case looked at that closely. Our system, like many people, doesn’t understand how young people can be disabled and so it tries to dismiss them or pretend they don’t exist. I know people who have given up on the 3rd denial who were around my age.
More To Prove
When you are trying to run a business and applying for benefits, you have more to prove. This can show up in some people outright dismissing you as some lawyers I talked to did. This can also show up in a lot of paperwork. The business I’m building is an independent press and sensitivity reading business. It’s called Miss Geek Bunny and has existed in various forms over the last 6 years.
Since I started having issues with my disability, I’ve watched the paperwork needed to maintain my business go significantly up. When you apply for benefits, it matters how your business is getting the money to cover its overhead and how much money you bring in, even if you aren’t turning a profit. There are often statements that they want you to write about how much you expect to make in a time period. These statements are never one offs. You often need to submit the same paperwork repeatedly to various agencies. You also need to account for some of the rare months where contracts overlap or you happen to make some extra sales, and show how it’s not a common event you can count on happening again.
The previous point where age matters for them complicates this. If you are showing signs of potential profit and you are under the age of 55, often they will scrutinize everything you are doing, hoping you are just shy of taking off in a way where they can deny you. It’s crucial to be upfront and brutal about what you can and can’t do at this stage. Put away the ideal version of yourself you are working towards at that point and look at the hard numbers of what you can and can’t do. What tools do you need to do what you do? What accommodations are you giving yourself that an employer can’t fiscally justify to their company? When you are at this stage of your disability, you will already have the stigma of being disabled with employers you apply to. Be honest about the roadblocks you have so that you aren’t just left to fight against a system alone which is biased against people like you.
Having a Work Life Balance
Many spoonies will say that managing your health is a full-time job that no one pays you for. When your health is a full-time job and your business is growing, it’s hard to give each the attention you want. Add on pain, seizures, fatigue, or any other energy or time sucking symptom and the balance can feel overwhelming. Combine that with the novelty of your new limits and you can overdo it or just struggling to get yourself to do what you want to do. This has been an important aspect of building my business. I have my work area set up so that when fatigue sets in, I can just lie down and take a nap. I invest in audible so I can read newer books while I don’t have the energy to open my eyes or concentrate. With my condition, I have put my focus on making my business work for my life.
While a standard work place would never allow me to work for a few hours and then nap for a few hours, my business allows me to structure my time and be flexible with my needs. This flexibility allows my business and life to bleed into each other. I still don’t have a perfect system, but I keep experimenting to find what works best for me.
All The Paperwork
Running your own business has its fair share of paperwork. The same is true for people living with disabilities by applying for benefits. I’ve spent a few weeks this year on paperwork while I’ve been in a place of waiting for a hearing. Add onto it the records we keep on our health and the paperwork stack grows significantly. While skipping health tracking sounds like a decent idea, for all the other paperwork you have to deal with, that information becomes vital. It’s a pain to keep track of details like your daily heart rate or the timing of your last seizure, but the information is vital for giving accurate information to your doctors and to a caseworker or judge for your disability benefits.
How Conflicting Ideologies Mess With Your Head
There have been multiple times over the past two years where I’ve had to work with my therapist about how disability benefit restrictions and the ideals of building my business just work against each other. In America, they cut disability benefits off if you have more than $2000 in your bank account at any time. There are certain exceptions that can be made with businesses, but usually it involves having multiple people in the business. You can only make $1767 a month total, including other benefits like food assistance before you lose benefits. These restrictions strongly put anyone with a disability receiving benefits under the poverty line. When you contrast that with the idea in business that it’s great to grow and get investment or have a profit, you can see how those beliefs struggle against each other. When you are applying, the Social Security Administration, who handles these disability benefits, says that if you earn over $1350 a month while you are in the process of applying, you will probably be denied. This creates a dynamic where you want to build a business that can help you cover your bills while also keeping it small enough to get benefits. When you add that most people wait over a year for benefits and receive a lot of back benefits when they qualify, you can see how this dynamic over the long term can mess with how you see everything.
This is some insight into some of the experience I’ve had while applying for disability. I still have a few months more of waiting before my hearing, but these are some things I’ve learned or noticed as I’ve gone through the process. Hopefully, this helps others who want to make their own business but also need benefits for either the long or the short term. Also, based on everything I’m seeing on the Social Security Administration’s website, it’s encouraged for those who can still do some work to try. Despite these tricky bits, I still am glad I’m working on my business and trying to make it profitable. I hope this helps and if you want to help my business move towards profitability, share this article with your friends or click the “Support Me” button below the post. If you are like me and building a business while applying for disability benefits, tell me about your business in the comments below.