Last time we started talking about what you don’t know about the U.S. disability & public assistance system.

Here’s what you better know in case you ever get an incurable illness that doesn’t allow you to work a regular job.

Little known fact about getting on disability #5 — A literal vow of poverty

Accepting a disability program – or the health care that is often in tandem such as Medicaid –  often literally means you have to take a vow of poverty to stay on it.

Of course technically you can work. But your benefits can then be reduced by however much you take home.

There are exceptions but don’t expect to stay working or middle class and be on public assistance.

For example, on the need based SSI program you can keep your house and cars (and apparently a bunch of motorcycles??) but that’s about it.

It’s not a lot of money to begin with- the average SSDI benefit  (the program where you basically getting the social security money you paid into the system early) is just under $1200 a month.

The SSI maximum was $735 in 2017.

The. Needs. Based. Program. MAXES. At $735 a month.

If you can figure out how to make over $22,000 a year as an individual before taxes doing ANYTHING else?

It’s literally and figuratively not worth your time to apply.

Little known fact about disability #6 — You’re basically taking a vow that you ARE impoverished to keep it

It’s only now that I don’t own a house in my name and don’t own a car – because I currently can’t drive – that I’m finally broke enough to be considered poor.

That makes me eligible for the moon and stars of benefits in the state I’m from, but without children? Not much in the state I’m presently IN.

You have to have under $2000 in assets for some programs.

Of course it’s also really expensive to be poor.

Poor people pay more for the same items, often because they can’t pay for things they need in one lump sum, or because they can’t make the bulk purchases that would result in a lower price.

If you work while you’re on it?

Again, whatever you make is subtracted from that month’s benefit amount. Say you wanted your disability benefits to be temporary as opposed to perpetual.

They (we?) often don’t have enough money to pay promptly so we spend a lot of our money on late fees. Most jobs accessible to people who are poor don’t pay enough for them to live, never mind achieving upward mobility.

It’s worse for disabled people.

We’re less likely to be employed, when we are employed we’re paid less for the same work, and we have many more expenses than “abled” people do.

Those expenses aren’t even extras, they are essential to living for us- things like prescriptions, pain-alleviating aids, mobility devices like canes and wheelchairs.

I was told to get a wheelchair several times, yes even though I can walk, because it always hurts. It has hurt since 1993. I saw wheelchairs as the enemy then and refused.

I saw wheelchairs as the enemy was because if this prevailing notion that if you can walk, you shouldn’t have a wheelchair, as much as it might hurt you.

However I’ve since learned that I might be stronger now if I’d had the sense to let my spine rest and recover from time to time in my twenties.

And that ambulatory wheelchair users exist.

But ain’t nobody got money for that.

Transitioning to a full time well paying job might not even be possible without having the rug pulled out from under you.

As soon as income outside of the disability benefits shows up in the system, your benefits are taken away.

Have you ever started a job, knowing you were going to be in the hole for two to three weeks until your first paycheck?

What if you have no savings?

How do you get to work?

How do you buy gas or ride the bus with literally zero funds and an overdrawn bank account?

That’s right.

You don’t.

See the problem?

Again, if you can get any other type of consistent income?

It’s basically worth not having disability benefits.

But on the other hand, not pursuing it as an option means it won’t be there years from now when you really need it.

But how do you apply for it if you’re not poor enough yet?

Little known fact about disability #7 – Sometimes you’re forced to choose

in some states qualifying for one thing makes you ineligible for other stuff.

Or some confusing nonsense?

Or just having lived a life. I found out today that since I’ve been married before I can’t get SSI.

It doesn’t say “if you’ve received alimony.”

It doesn’t say “if you’re currently divorced.”

It doesn’t say “if you’re a widow.”

Nope. I was married. So apparently I’m welcome to go die somewhere.

Disabled people in need have to choose between poverty and being able to have a legal union with the person we love.

So no way to legally enforce the rights of a wedded union. It sucks.

Seriously I don’t even want to apply for even food stamps. But.

It’s not about me.

I’ve been eligible for public assistance of some type since 1996. But I vowed back then to find every another way, as long as I could.

I first moved 3000 miles from my home town to avoid it.

Then I tried business after business until I could live on freelancing or a small business income.

My whole adult life I have supported myself and more often than not a whole other adult. I took pride in that. The hustle was my thing.

If you needed to come up with fast but honest money? I was the one who people called.

I gave to charities and organized other small businesses to do the same. I patronized Patreons and Ko-fis. I employed peoole and freelancers.

Though I used to provide cash for half the household bills and extras for the children? I now literally can’t work.

I’ve tried.

I’m still trying.

So the people I used to support are now supporting me. And it is tearing me apart.

It’s not that I think the value of a person is based on their ability to provide a profit for someone, though I once thought mine did, very recently.

It’s that my identity is caught up in the pleasure of giving, building, creating and being useful.

My business was about giving small businesses the ability to have an option other than paying for advertising, and the belief that building relationships was the best way to create lifelong repeat customers.

My writing was about helping people understand experiences they’d never had.

My activism was about making the world a better place for all the good people in the world.

So getting to this point and not even being to contribute enough to buy my own medicine and food?

Being trapped in bed for days sometimes?

I don’t mean to sound like I don’t have joy in my life still, even now.

But feeling useless, like I can’t do anything for myself?

Being in constant pain and fatigue?

Constantly anxious about the background noise level of terror that is the constant musing over whether the cancer is back?

Or what new illness an unfamiliar pain might be?

It can feed the depressive nature that it took me years of focus to recover from after childhood traumas reoccurred in my twenties.

The depression is fed by the unending pain which breeds even more fatigue which circles back around to the depression again.

Until it takes a Herculean effort to simply turn over in bed.

I fight it with marathon watching of favorite comedies. I write.

Though it takes a week to write what I could before in an hour.

At half-strength, I continue my activism through writing. Most on Twitter where no one knows if it took me ten minutes to type one tweet or resort to the imperfections of using voice recognition.

But food stamps, a small public assistance check from the years I earned wages? It would be… Something.

I could give it to my loving caregiving relatives that I live with as rent or to cover my share of the food budget.

One makes my food, helps me when I fall, the other works two jobs to cover my shortfall.

So until I can find a way back on my feet? I’ll do whatever is necessary for my family to ease their financial burden.

Even what I’d never do for myself alone.