March 2025: I might have to close up shop.
SSA is collapsing, and I’m fucking terrified.
I am not releasing a video newsletter this month, as I have a lot of other cognitive heavy tasks to focus on. And this is a deviation from my normal newsletter, but it’s incredibly important to me.
You may have someone in your life who relies on SSA to survive. But in case you don’t have someone’s story in your ear, I’m offering you- in as much vulnerability as I can muster right now- mine. Use it to take action. Use it to tell people in your communities to act. I know our attention is being called to a billion different fires and it feels hard to know exactly what to do, so I have some specific CTAs at the end.
For over 2 years I have been slowly shaping this business to support my limitations as a disabled, chronically ill person.
And I
A. Couldn’t have done it without SSA and
B. Have to do it because it’s impossible to survive on my SSA benefits alone and because I cannot work traditional jobs due to my health.
SSA is currently collapsing. The disability benefits I fought so hard to get- and that I earned through the work I did since I was 16- is suddenly not guaranteed to be there for me. And because of my limitations, I can’t placate the social media algorithms with dances or skits or even simply show my face very often, so my business has not yet grown enough to support me without my benefits.
If, in fact, SSA stops working correctly and benefits are interrupted, I will likely have to close up shop and stop making art altogether.
One of the most essential things I’ve learned over the last 7 years as I’ve adjusted to my disabled life with severely energy-limiting conditions, is that I have to combine activities very specifically if I want to experience more- more dimension, more joy, more life. Nondisabled people do it every day, without thinking; like putting on a podcast while they commute. Or do it in a way they view as a privilege; like working in a dream job they’re really passionate about.
But for someone like me, combining experiences is essential, because it isn’t for mere enjoyment or to avoid boredom (which are valid). Or even some inspirational “I can work in my dream job despite my disabilities!” trope. It is because if I don’t intentionally, specifically combine things, then I have to sacrifice them.
See, I consistently rate around a 2 out of 6 on the FUNCAP27 (a functional capacity questionnaire specifically for energy-limiting conditions); using that, let’s say that my body battery has a cap of 30%. With that max 30% of energy I have every day, I spend the majority of my energy on the mountainous full time job of tending to my health and doing ADLs (activities of daily living). The rest of that capacity is dedicated to my business, including creating art. Sometimes I have less than 30%, and there isn’t enough energy to do all of those things. Either way, there is no energy left for hobbies, for fun outings, for deep relationships or friendships, etc. that don’t connect to my work somehow. My life is really, really small, not by choice. That’s why I’ve chosen to do the work I’m doing and live where I live, so I can actually experience some enjoyment and meaning in the very small life I do have.
And the SSA benefits I earned when I was able to work prior to 7 years ago provides a baseline of income while I grow a business that prioritizes the accessibility, flexibility, and creativity I need. If/when SSA collapses, if/when benefits are interrupted, I have to take the mere 30% of energy I have on a good day- and not just the energy from my business, but also pulling energy from my care and from my ADLs- and direct it into some other kind of work that is less accessible to me just so I can at least stay housed, leaving no room for anything else. Including making art, even for fun. My small life will be restricted to something exponentially smaller. And that terrifies me.
My business isn’t actually a life-giving, easy peasy job to work in, it’s just the one that is most accessible to me. With Intracranial Hypertension (same symptoms as a brain tumor), cEDS (severely painful), ME/CFS (debilitating fatigue), POTS (can’t stand up more than a few minutes at a time), and a dreadful symphony of other conditions and symptoms, working in my business is very hard. I work at my fluctuating capacity every day, even though I’m not constantly cranking out artwork and posts as there is so much behind the scenes that goes into it. I try to balance the cognitive heavy admin tasks with the nourishing creative ones, but sometimes the cognitive heavy tasks take me a very long time to complete or they beat me down completely. It’s taken a full week for me to write out this newsletter, as one example. Last November, I worked beyond my capacity for a couple days, pushing myself to release the OPIA Collection and that month’s video newsletter in the same window. For an entire week after, my brain and body were shut down. I couldn’t look at screens, I couldn’t listen to anything, I couldn’t do anything, much less market my collection. The only things that I could scrape enough energy together to do was feed myself quickly, feed my cats, and use the bathroom.
But because I work for myself and because my disability benefits were there for me, I could make different, better decisions about how I work moving forward. (Notice how I’m not releasing a video this month?!) I set my schedule, I decide what needs to be completed and when, I can allow more ease and a change of direction and better care for myself. It took me 2 months to recover from that major flare, but what if I had to answer to someone else? What if I was on someone else’s deadline? If/when SSA benefits disappear, I will not have a choice but seek other employment as I do not have anyone in my life to support me. And I will have many, many more weeks like the one in November. And that terrifies me.
And while this is my story, it’s not only my story.
70+ million people rely on SSA.
13+ million of us rely specifically on disability benefits.
Those are people in your communities, in your neighborhoods, in your families. 20% of the U.S. population relies on SSA; that’s 1 in 5 people. Yes, 1 in 5 people around you are elderly and/or disabled and likely need your help.
Over 800,000 people in Puerto Rico rely on SSA. That is about 25% of the population. Here in PR, we don’t have voting representatives because we are a colony, so no one to call and urge to take federal legislative action of any kind. No one here was able to vote for the president (and our symbolic vote showed that the vast majority of people wouldn’t have).
Currently, the same class of billionaires and billionaire-lovers who claimed in 2020 that grandparents would gladly sacrifice their lives to Covid to support the economy and who said that disabled people were disposable (and then followed through on all that) are functionally destroying SSA- when they’re not threatening to shut it down entirely. They’re claiming that grandma wouldn’t call and complain if she missed a social security check unless she’s a fraudster. Personally, a big fear I have outside of the payment system just not working properly is that they’ll decide anyone who is working even a little bit is capable of working a lotta bit, and kick everyone who are in work programs (like myself) off of benefits.
This will unhouse people. It will kill people. And that is their intention. It always has been.
So here is what I need you to do:
Call your representatives. If you have been calling them, call them more and on behalf of SSA recipients and those in Puerto Rico.
Tell them that the closing of offices, the reduction in staff which was already at a 50 year low, and the requirements to go in person to prove identity are incredible barriers for vulnerable people who rely on SSA.
Tell them that the risks of data access and the elimination of employees who understand how the system at SSA works is unacceptable.
Tell them that even one missed check can put millions of medically vulnerable people on the streets.
Urge them to protect Medicaid and remind them that HBCS (home and community based services) are funded through Medicaid, keeps disabled people in communities where they belong, and keeps them out of institutions. (In places like Texas, some people aren’t even eligible for Medicaid unless they’re actively receiving disability benefits through SSA, so those benefits programs are tangled.)
Do this NOW. The House had a confirmation hearing for the SSA commissioner nominee today, they need to hear from you that you expect and demand SSA to be protected.
Make a plan for (AND WITH) the people in your life who rely on SSA to survive or those who are in the long, arduous process of applying for benefits. I want to emphasize: INCLUDE the person you’re making a plan for, ask them what they need and what would be most helpful, do not impose a plan on them.
Help people before the phone ID verification system goes away on 31st and drive them to field offices when they need it after the 31st. (Update: The date changed to April 14th.)
Ask them if there is a bill that you can cover, groceries you can buy, etc.
Figure out an alternative housing plan if losing their social security check means they’ll be unable to pay rent.
Again, ask THEM what they need.
Tell other people in your communities to also do those things. Tell the groups you're in, tell your friends, tell everyone.
I personally- in case you haven’t noticed lol- am terrified that the stable income that keeps me housed will disappear. My car needs repaired, again. And I’ve only reached 2% of my Ko-fi goal this month. So if you want to support me, you can support my business by donating or becoming a monthly supporter on Ko-fi. You can order a commission there too. You can purchase items from my shop. If you want to donate to me personally, my Venmo is @destiny-toro.
I currently am working on a tropical fruit series and redesigning/adding to my Chronic Cards greeting card collection, so keep a hopeful eye out for those if I’m able to stay in business. Oh! And April’s printable calendar is ready for you. (Link is a direct download.)
::Deep breath in. Deep breath out. Fuck::
Thank you for reading. Thank you for your support however that looks (either for me or the people in your life who need it).
PS. Sharing news sources DOES NOT mean I wholeheartedly endorse said news source! I am only sharing so that I can point you what is happening.
PSS. I never, ever thought I’d ever be in the position of begging to save SSA. I have been vocally and emphatically critical of SSA and in support of major improvements that include disabled people’s input. Here are some thoughts I had last week about that:
41 Ave Fernando L Ribas #458 Utuado, PR 00641