how able-d is disabled?

There is a word so dirty, so divisive, it brings  conversation to a stand still. 

It's not to be brought up at family events. 

It's a shameful thing not discussed in polite circles.

Thankfully I was never big on polite conversation, and cancer squashed any sense of shame I had. 

I'm talking about disability. 

More specifically Social Security disability. Did you know July is disability pride month? I didn't until this year, but seeing as the 30th of July is also the anniversary of my surgery, this seemed timely.

I was raised in your typical conservative Midwest hometown, hearing plenty of opinions. That people on disability just didn't want to work. That they wanted to do nothing but mooch off the rest of our hard earned money. That they used the money on drugs and alcohol. That if they dressed nicely, or indulged in small pleasures then surely they didn't need it THAT badly. 

But I've realized that a lot of these opinions were formed without a good working knowledge of what disability entails. So I wanted to clear up some common misconceptions. 

First off, yes. I recieve disability payments. I did the research and applied for it myself so this will be partially my experience, and partially the information I found while researching the system. Any numbers I give regarding SSDI will be based on information from the social security and US treasury websites.

So how did I get on disability in the first place? The application process is incredibly long and arduous. I spent about a week and a half doing nothing but gathering information. It was tiring and tedious and I went home with a headache almost every night.

Surely if the process is that complicated there are people who can assist right?  

Of course! 

Once your information comes up as having searched for how to apply, companies call you up and offer to help... for 30% of whatever you get. 

But how do these companies get that information? I'd challenge you to go to Google and search disability application. 

For me, the actual application (the .gov website) is result #4. The first 3 results are companies who make their money by helping people apply for disability, and hiding in the fine print that their services are offered in exchange for a massive percentage of the resulting income. They continue to exist, and continue to prey on those that have been through horrific events that have affected their ability to work, because the application process is such an undertaking.

Some of the information you need includes a copy of your birth certificate and Social Security card. I also had to update my license since I moved across state lines. They needed my W-2 forms, and all employment information from the last 15 years as well. I needed all of that in addition to all information relevant to my medical condition.

 I was lucky in that most of that information was readily available to me because two of the four total hospitals I received treatment at use the same system for patient information. But, as you might guess, printing out over a year's worth of information when you've been through cancer treatment is a lot. I went through an entire ink cartridge printing it all. We ended up with a stack of papers thicker than your average novel that had to be mailed in a box because there wasn't an envelope large enough to hold it all.

There was the initial surgery of course. Then the week long hospital stay. Visits from the home health nurse, three rounds of chemo, and thirty three rounds of radiation. Weekly blood draws for months even following treatment, every check in with the surgeon, the medical oncologist, the radiation oncologist and primary care physician (There were times I'd see two or three doctors in a day). Every trip to the infusion center for fluids (there was a while I was going twice a week because I couldn't keep water down). Every scan, every test, every hospital visit, and every bill that accompanied them.

As for how the money is used, after paying my rent and bills, and tucking a little away to travel to see my friends, there's not much left over for anything like drugs (though I fully admit I don't know the going price of drugs).

When there is a little left over, I do sometimes treat myself to small indulgances; a bath bomb, a new accessory, a haircut, a piece of clothing. The most common argument I've seen against these small luxuries is that disability income comes from taxes, and therefore those paying taxes are entitled to know how you spend it. 

While it's absolutely correct that taxes pay for disability income, taxes also pay the salaries of government employees. I've never met anyone who felt they had a right to question a TSA employee about what brand of clothing they're wearing, what groceries they buy, or why they have highlights in their hair. 

At any rate, it seems odd and unrealistic to want to limit a person to the bare minimum of existence. I have cashmere sweaters, but I bought them second-hand. I have my nails done, because it's something mom and I enjoy doing together and she's willing to treat. I have a couple of loungefly bags that I saved for, and bought on sale. It would be easy for someone to look at the small pleasures I allow myself and make judgments about whether or not I deserve these things because of my ability to work.

But what about those that misuse the system? I'm not denying they exist. As long as there are systems to help those that need it, there will be those who choose to abuse them. But there are major deterrents that would discourage most from trying to cheat the system. The first of which is the sheer amount of time and energy that goes into applying. The second would be the cap on assets. 

As someone receiving disability payments, I'm never allowed more than $2000 at a time. If I were ever to remarry, my spouse's assets would count toward that total as well. The government is allowed to check any and all assets in my name (at any time) to insure that. I had a decent amount saved in a Roth IRA retirement account that had to be cashed in. Same with my emergency fund. Both had to be relinquished. There are people who have been happily married for years that choose to divorce when one partner goes on disability in order to maintain those safety nets they put in place for themselves or their family. 

Another major deterrent is simply the acceptance rate. You might think if anyone takes the time to fill out that huge application, surely then they'll be approved. Right?

Not exactly. 

Only 22% of applications are approved on the first try. 63% of all applicants are turned away annually, and there's a 60 day waiting period if you want to appeal. If you appeal twice and are turned down twice, your choices are then request a hearing, or start from square one and apply again.

There are those that claim people recieving disability are just raking it in, getting rich off everyone else. While the $2000 cap definitely limits that, also keep in mind the average disability payment per month is around $1,200/month with 90% of recipients receiving less than $2000/month. It's a decent sum, but slightly less so when you consider the average rent of a two bedroom apartment in my area runs in the $1200 range (the average nationally is just shy of $1300). 

There are some that argue that disability is just taking a huge chunk of their money. I think it's less than many would guess.

Let's say you pay $25,000 in taxes every year.

Of that $25,000, 20% goes towards the military, 15% towards  national debt. Only 6% goes towards Social Security as a whole (retirement as well as disability). That totals out to $1,500 a year. Of that $1,500 only 13% is going towards disability income. That comes out to $195 annually that you're actually paying towards disability. Less than 1% of the total.

I also feel like it's important to recognize how privileged I was even in the process of applying for disability. My parents became my landlords to guarantee I had a rent controlled living space. They were willing to cover my living expenses until the paperwork went through. They surrendered use of their laptop, wifi, and printer for the week it took to gather information. They paid the postage to send that box of paperwork in. 

So why not just get a job? Well once you're receiving disability there becomes a catch 22. My Medicare policy is tied to my disability payments. So, I could either find a job that pays little enough that I wouldn't have to worry about the $2000 cap. Accept it would probably something I wouldn't enjoy or find fulfilling. Or, I could find something that pays well enough to cover my expenses, as well as a very good insurance plan to cover my continued care costs, and offers enough flexibility to still go to all of my doctors appointments (I average about an appointment a month now). 

Then there was the timing of world events. I finished treatment in October 2019. Five months later, the world shut down with Covid. I was still immunocompromised and weak. I had been told I was extremely difficult to intubate, and this was a largely respiratory virus. If I caught it, I was at a substantially higher risk for serious complications. If it went badly, I was at risk for it to go VERY badly. There was no good marker for when it was "safe". Frankly, I had more than my fair share of hospital time and wasn't thrilled at the thought of more.

On top of that, there's the obstacles of my actual disabilities. My major skill sets I developed were in childcare and customer service. Both of which require huge amounts of verbal communication. If a person is locked into a conversation with me, I remember to speak slowly, and over enunciate, most people can understand me. But honestly when is the last time you really locked into a conversation with a retail employee?

I've heard "just learn sign language!" And I looked into it. It takes about 3 years of consistent classes and implementation to become fluent. It's a separate language, just like Spanish or French. It would be like waking up one day and no longer being able to speak English (but still understanding every word of it) and having people say "Just learn German!". Even if I spent the time money and effort in becoming fluent, unless everyone in my life decided to become fluent as well, it's basically useless.

I live off a feeding tube. I can't swallow properly. I have to take robitussin to thin the mucus caused by radiation. I can't turn my head to look over my shoulder or lift it to look at the sky. I have substantial nerve damage to my left arm and leg, and I'm still trying to regain the muscle I lost. I don't say any of this to complain. I'm incredibly grateful to have walked away with my life, but I'd be lying if I didn't admit my life was permanently altered. 

I've fought every day for three years for scraps of normalcy. Disability allows me a bit of independence. It allows me to pay my own bills. It allows me to get gifts for my niece's birthdays and Christmas. And yes, it allows me the occasional bath bomb. 

Given the choice I would have happily continued to work, to contribute that fraction of a percentage of my taxes if it meant I never had to see my parent's faces when the doctor said "cancer". If I could have continued to pay into an imperfect system in exchange for not having to cry over my scabbed and skeletal arm. If my concerns were focused on keeping up my half-price gift card sales and not keeping up my weight when I couldn't keep anything down. I didn't get that choice. But I did get a safety net.

I've fought for three years to appear as normal as possible. To function as independantly as possible. The result has been appearing normal enough that at first glance I could be deemed undeserving. I still question it myself because of the stigma associated with it. Before you scoff at those using a system you've been blessed enough to never need, before you judge, pause a moment. 

Keep in mind the only difference between "them" and me, is that you know my story. 

You see how I choose to present myself to the world. In control of my narrative.

Healthy. Brave. Full of life.

What I don't like telling people is that I fight to be that every day. Because I remember the alternative. In pain. No control. Sick. Scared. Weak. 

The world has the luxury of forgetting what made me a survivor.

I don't.