If You’re Disabled, You Are Supposed To Be Poor

The system’s designed that way.

Both my wife and I are disabled.

Although hers is from a long-term condition that began at birth, I’ve been on disability through Social Security for a longer period of time.

I’m blind and immunocompromised. She has half of a heart and is even more immunocompromised. She, thankfully, did not take as long to get approval as the 7 years it took me, but we’re glad to at least have some kind of income. Without it, we’d be screwed.

Here’s where the problems begin.

You see, we’ve been married for 10 years now. When we first decided we wanted to be together for our lifetimes, we debated heavily for months if actually getting married would be the best option.

I knew if we did get married, we’d take a hit. The government only allows a certain amount of income in the family and getting married would likely take us over that edge. If we went over that boundary? Well, I would lose my health insurance, she would lose hers, and we’d miss out on a lot of income.

We’re not allowed to save money. Doing so would push us through the margin and we’d lose income and insurance. We can’t have any sort of nest egg to help us, such as when needing a car repair or something worked on in our home. All we can do is pray and hold out hope everything we happen to own remains in good condition, because if it fails, we’re out of luck.

That also means that I, as a blind man, who could really use a seeing-eye dog, cannot actually do anything to help myself get one. They cost a minimum of $10,000, and we’re not allowed to have one-fourth of that in our bank account before losing our income.

So, that means the people who need that kind of help the most are actually never able to afford it. Sure, there are programs available to help, but they are all needs-based and difficult, at best, to get on the lists for.

We are, quite frankly, in enforced poverty because we cannot step outside of the boundaries the government has imposed upon us.

It affects the children of disabled people, too.

One of our children has a lot of mental incapacities. They need treatment and medications. A lot of them. If we skirt the line of income, they lose their Medicaid and we’d have to pay out of pocket for it all. That would murder us. One medication for them alone would cost over $1300 a month. I’m “graced” with only receiving half that much in disability. It would be impossible to pay for that medication without assistance.

So, we remain stuck. We remain poor, because we have no choice.

When you’re disabled, you have to deal with a lot of things.

You have to take the brunt of the stigmas that come from outside of the household. You don’t work? You must be lazy. That stigma is even worse if your illness happens to be invisible.

Then there’s the depressions, the beating-yourself-ups, the horrible things you tell yourself in the middle of the night when no one’s around to hear. Those are killers, and they really don’t stop, even after you’ve accepted your conditions. They still have so much power over the perception you have of yourself and any sense of self-worth must be fought for daily.

Perhaps the worst part of it is you can’t have hope.

Taking myself as an example again, as a writer on a platform where I can earn money for my words, I have to be cautious. Not for the things I talk about, though. That part doesn’t really matter. I’m proud of what I write and talk about, as anyone serving stories to the public should be.

It’s that potential of income I have to be concerned with.

I love to write. I love knowing I can make a little scratch off of the words I pen and put out there for your consumption. Crafting fictional worlds, relating my history and experiences to help people out, knowing I’m leaving a legacy of language for my children. Those are things to take pride in, even if some days it’s difficult to get that self-satisfaction going.

But that hope comes with a price, and it’s a big one.

In the back of my mind (and on our financial papers), I always have to be aware the shoe can drop. I can’t actually, really, fully enjoy the successes like someone not on disability can. If you’re not disabled, if you’re not beholden to some governmental entity as a matter of your survival, it might be hard to understand.

I can’t enjoy it, because I have to have conversations with my wife about the fact my success might have to lead to our divorce. That’s not due to us drifting apart or me suddenly buying a BMW and going on a rampage.

Nope. It’s because if I make too much, she loses out on her insurance, I lose what little I am graced with, and we find ourselves in a worse financial bind than what we were before I started the journey.

I would have to divorce my wife, the person I love and adore with the fury a thousand suns could never match, because we are disabled and the two of us are expected to remain poor.

That’s a hard cross to bear, and I’m not alone.

There are thousands in this position right now.

Thousands of couples across the US alone go through conversations like this on a daily basis. Many people avoid marriage altogether because they’re in even more dire straits and would get screwed over before they had a chance to do anything.

It’s the reality we disabled people have to face, and it’s inhumane on every level.

I’m not sure what can be done about all of it. Universal income? Maybe. That, too, would come with some issues everyone would have to deal with.

Up the limits on what disabled people can earn before being stuck in this kind of situation? That, too, still leaves the issue of having to deal with a sect of people forced to live within a small bubble of acceptability.

We’re labeled, put into a box, and forgotten about by the majority of abled-people.

I think that’s really the crux to understand with all of this. Disabled people already have a lifetime of impairment on finding peace, security, and joy in life. We also have to fit within this tiny frame of what people who aren’t disabled say we should be ramrodded into, and screw you if you want to try to uplift yourself from it.

There has to be an equity somewhere. I’m just not sure what we can do to get there.

Thank you for being you.

Keep striving to “be the best you that you can be” at this moment. Remember, no matter who you are or what you’re going through, you are worthy of being loved. Don’t let anyone teach you anything different.

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