This post is going to start differently than the last few. I had a difficult few days where I was emotionally very down and frustrated and I vented it all out on Twitter. Essentially, there is a misconception that once you receive SSDI you will be okay. When I was approved 15 years ago I genuinely thought that meant stability and healthcare, and that I wouldn’t have much, but I would be okay.
That is not what happened at all. The amount given is so small that they know you cannot live on it, and so they allow you to work – in many cases to earn more than your SSDI pay out is. In effect: the system is built knowingly. People who are severely disabled will not be able to survive on it, and will need to find some way to earn more money.
You then get roped into state programs and Medicaid – nearly by default as anyone on SSDI is going to have large medical needs. Which then doesn’t allow you to earn much without costing your medical benefits OR increasing your out of pocket expenses for every bit of money you earn.
Ultimately, it’s a system that keeps you locked into forced poverty in order to have life saving medical coverage. The exception to this is someone who may have a pension, or disability payouts through work. IE: have other income than just SSDI.
The fact that I may never be in a position where I can afford to live without working hit me really hard. My health is getting worse. I was reading through old journals and I can see the pattern where flare ups are lasting longer, this condition has worsened overall, that one is getting harder to manage. I’m getting worse, and I don’t know what will happen and I freaked out.
And I looked at my $1k tracker challenged and realized I was designing my own version of, “The Hunger Games.” My trackers and challenges, pushing a broken body too hard, to reach what I need to live each month, because our social supports are too poor. I made it about me. What I could do. Personal responsibility. When there is a systemic issue at play. I played right into the Capital’s rhetoric.
I started to think to myself that I was so tired of proving that I had value and worth. Am I not worth $1k? Am I such a burden? So undesirable that society and the system give me just enough that they can say they helped? This ableism that is so baked into society is what had people wheeling themselves into the gas chambers. Remember the propaganda? The posters saying how burdensome disabled people were? Do the right thing for your family and country and die?
That shit isn’t gone. It’s just more subtle now.
For a long time I have had invisible disability privilege. No one looks at me and sees my disability before they see me. It’s a double edged sword: because people can’t see it, they don’t offer accommodation either, or when it is asked for I am often asked to demonstrate or prove my worthiness. But I am realizing that I am feeling the slow loss of that privilege. It’s getting harder to hide my loss of balance and equilibrium. It’s getting harder to hide my heart problems by the fact that I have to sit or lay down in store aisles sometimes and everyone wants an explanation while I cough or perform maneuvers to shake my organ back in order. Increasingly, I have to lay down in the back of the van after a store errand to “reset,” my autonomic nervous system.
The reality of how much faster things are getting worse and how I have not managed to create security despite all my attempts crashed into each other and the hollow sense of hopelessness and lack of society support is terrifying. I do not know how I will live. I have enough saved to get through a tight year. That’s it.
I’ve moved mountains and accomplished incredibly difficult things on an income of $20-25K annually. I paid off my student loans, car loans, consumer debt, and have savings in an ABLE fund. It’s not enough. And on bad night, it hits me that it may never be enough.
And then me, working on my tracker of personal responsibility, acting like the impact will be enough to outpace the breakdown of my body. The incongruity could not be processed.
I will never stop doing what I am able to do, and often times – more than what I able to do. For my personal sense of self, I push my broken body too far, too frequently. I took my mom out to run errands for about 5 hrs this week. It took me 4 days to recover. My heart got so angry, it ran a marathon in my chest. Your heart can run a marathon while your feet never touch the ground. The fatigue was unbelievable. I don’t know how I am supposed to keep up taking care of them, myself and my 50 doc appts a year, and pet sit AND flip items for sale while supporting my community (I respond to so many DMs and emails, helping people one on one with disability and low income issues. People who, of course, cannot pay me for my time).
Just $1k would dramatically change the trajectory of not only my life, but my family’s, and the waves of people I help one on one. The dividends, the ripples, go far into the pond.
And I keep thinking I need to try harder. I need to find the right thing. Just keep going and you’ll figure it out. Honestly? I’m tired. I don’t know how I could try harder. I don’t know what I don’t know to figure out anymore.
I will keep moving forward. And I’ll keep issuing challenges for myself. I’ll keep pushing my own personal responsibility. And I’ll keep hoping, that one day, society will value its disabled members and tell me my value is above $1K.
Onto the update.
Week 3 – Weekly Tracker / Coloring page. I am giving these away for free.
The fun part. Coloring the pumpkins.
There are five weeks in October, if we say $200 a week is the goal, I’ve fallen a bit short. I’m listing an item I was considering keeping to bring up the difference. No bites yet.
Current total: $410.55 / $1,000
A thank you, to the incredible anonymous gift to my ABLE FUND. If you are so moved, or learned anything from my labor, please consider a small donation. ABLE is best, but as the kind commenter Lisa said, it may not work for everyone. As an alternative consider Cash App, Venmo, or Paypal. Thank you for your support and generosity.
Thank you to A Gai Shun Life for choosing to feature a link to me in a recent blog post.