Social Security: Part 3 – Working

“You can work on disability?”  This question is asked a lot, generally with disbelief or shock.  The general public believes that if you are “permanently and totally disabled,” and unable to do, “substantial gainful activity,” you are unable to do anything. Period. Full stop.

Let’s discuss a few things here.  One is the idea that a person can live life on $625 a month.  It is impossible to do without someone subsidizing your expenses.  In this case, my parents.  With such a small margin, it is still terrifying. You cannot get ahead.  You can’t do anything that could possibly be construed as a luxury.  Vacation? Haircut? Eye liner? Coffee?  Hell, you can’t even buy clothing, dog food, or car tabs.

At an income that low you would qualify for food stamps of approximate $183 a month.  In Washington state you are blessed enough to qualify for Medicaid (to cover the remaining 20% Medicare does not cover) but you are absolutely living an impoverished lifestyle, and likely dependent on others for support.

Think about how you picture someone on disability.  Is it an immobile person watching television all day?  Sucking off the system and living the life of Riley with no worries?  Is it someone in a wheel chair or with developmental disabilities?  Ask yourself about your assumptions.  I had so many.  I have had to confront many as well. I will discuss all of this at length in the future, but onto more financially guided things.

Yes. You can work on disability.  There are all kinds of rules and restrictions and income limits and trial work periods, and it goes on and on, but the Social Security website details that fairly well, so to sum up, for me it looks like this: I can (at this time) make roughly $1,000 in income without losing my benefits (and my  healthcare). It’s not that I can’t do anything ever at all. It’s that I cannot do it with any consistency.  Thus far this year I’ve lost about 4 months of my life to various illness and flareups.

I make that fairly consistently at this point.  That is an expensive $1,000.  After 30% self employment taxes it costs me $134 in Medicare premiums that the state no longer covers.  $187 in food stamps I no longer receive. And thus far, roughly $2,500 in medical costs out of pocket as my Medicaid deductible (often referred to as a “spend down”) is now $4,400.  It costs me approximately $800 to make that $1,000 a month.

What is also not discussed is that work – not just working at a job, but work in general – is necessary for life.  One must have a purpose, feel they are contributing, feel they are of value and worth.  Sitting around on your butt, watching tv, completely socially isolated, is a quick way to worsen your health, feel like garbage, and develop depression.  Unfortunately, the way things are set up currently, they do make it very difficult for someone, after receiving benefits, to contribute or be productive. More on that later.

After several iterations of part time work of roughly 10 – 12 hours a week  I came to the conclusion that what I needed was something that still let me see people sometimes (isolation is real and painful) and also allowed me to work from home where my being sick, having bad days, wouldn’t impact my income.  As a part time employee working 10-12 hours, I depended on that income, but calling out still happened.  I have a lot of health issues, and while people want to be understanding, no one working retail wants their two day a week employee calling out.  “You only work twice a week!”  And your coworkers end up getting angry at shouldering your work load. Eventually, you are often forced out, or the environment is so inhospitable you end up making yourself even sicker from stress.  As with many autoimmune conditions, you set off one, it’s like a set of dominoes and you end up missing weeks or months.

At my last, “real job,” I had an incredibly kind boss who was very understanding.  As long as she was who I spoke to when I called out, there wasn’t a problem. If it was any other manager I got a lot of attitude and had issues.  That job likely saved my life. During that time, I had therapy by working with animals, seeing people on a regular basis, and learned how to manage my health issues better – life is an experiment of theories being tested one after another.  I also had several surgeries and setbacks, but learned so much from that experience.

Now, I work from home as a pet sitter.  I would have kept working at my job, but my nerve problems in my hands and arms got to the point where I could not do the work safely.  I was struggling to open the heavy doors, to hold onto 100lb dogs pulling on leashes – I would watch the leash just slide out of my hand no matter how determined I was to hold on.  It was tough to leave.  Now people drop their dogs at my home and even on my worst day I can open a door to let a dog out, and scoop some kibble into a bowl.  Then we get back in bed and snuggle.  There’s a lot to this gig, and I’m working a post to detail that in the future.

My current income of SSDI plus working averages out to about $1,600 – $1,800 a month, but remember the cost of lost benefits?  Once that is removed I’m back down to about $1,200.  But one needs work to feel of value and I can’t imagine living another 50 years doing nothing that anyone, including myself, values.

Elephant in the room: SSDI (Social Security Disability Insurance.) Part One.

Social Security (SSDI): The numbers. Part two.

Social Security Part 4: Guilt and Shame

Social Security: Part 5 Medical/ Medicare



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