social security – elizabette… unplugged

#DisabledLife is filled with unexpected surprises. Sometimes, it’s having a caregiver call out, leaving you scrambling to find someone to come get you out of bed before your bladder explodes. Sometimes it’s getting into your wheelchair, desperate for coffee, only to discover that the motors have died. Mind you, this is just 18 months after you spent $1,000 to replace those same motors. Good luck getting insurance to pay for it… those miserly wankers only dispense wheelchair repair money in tiny allotments— like it’s radioactive uranium.

#DisabledLife is also all the time you burn navigating the minutia of a society not designed for people like you. Inaccessible places. Healthcare bureaucracy. People that won’t wear masks. But, if that wasn’t enough, #DisabledLife is also spending hours trying to get medical professionals to believe that you know more about your own needs than they do. (Heaven forbid!)

This weekend, I had another one of these #DisabledLife surprises. In my mailbox, there was a packet with one of the most dreaded return marks in the corner:

SOCIAL SECURITY ADMINISTRATION

When I saw it, I knew that nothing fun would be inside. There would be no Target gift cards, or 50% off coupons for pumpkin spice candles. There would be no sweet messages with heart emojis or stickers that smell like root beer. Instantly, I knew that no matter how good my day had been going up to that point, that the rest of my joy (and patience) was going to be drained by the contents of that envelope— like a damn black hole.

“Fuck.”

Yes, I actually said this aloud.

Then, I stared at the envelope for a few moments, debating when/how to open it. I eyed it suspiciously, like a bomb squad specialist defusing an explosive. When I couldn’t take the anxiety anymore, I grabbed my homemade letter opener (with a long handle designed for my weak, skinny hands), and sliced it open.

I read the top of the page:

“The Social Security Administration must regularly review the cases of people getting disability benefits to make sure they are still disabled under our rules. It is time for us to review this case. Enclosed is a Disability Update Report for you to answer to update us about your health and medical conditions, and any recent work activity… Please complete the report, sign it and send it to us in the enclosed envelope within 30 days…”

In case this jargon is confusing, let me translate: Social Security has given me 30 days to prove that my permanent, genetic disability hasn’t magically disappeared… like classified documents do at Mar-a-Lago.

I grumbled. And cussed some more. Then, I changed my weekend plans from “Binge Abbott Elementary on Hulu” to “Fill Out Useless Paperwork.”

My irritation was massive. It took all my willpower not to set the packet on fire. (Truly.) Yet, I managed to complete the forms. For the sake of my own sanity, though, I added the following letter for good measure.

Think they will reply?…

…

October 8, 2022

SOCIAL SECURITY ADMINISTRATION, P.O. BOX 4550, WILKES BARRE, PA 18767-4550

SENT VIA UNITED STATES MAIL

Dear Person Working At The Social Security Administration:

Hello. First, I’m sorry that you work at Social Security opening mail and reading letters just like this one. Everyday. Even after you’ve been sick with the “flu” — or, as is more likely, just hungover from too many margaritas.

Second, I’d like to introduce myself. My name is Elizabette. I live in California with a cat named Charley that likes to steal my breakfast. I was diagnosed with Spinal Muscular Atrophy, a genetic neuromuscular disability, at the University of California, San Francisco, just before my 2nd birthday. I started using a wheelchair at the age of four, when most kids are just learning how to pick their nose. My disability is progressive, so I transitioned to a power wheelchair at the age of seven.

Third, I’d like to assure everyone at the Social Security Administration that, yes, I’m still disabled. My genetic disability can’t be cured by clicking my heels together three times. In fact, I couldn’t even click my heels together if you asked me. Because, yes, I’m THAT disabled.

I need help with all my daily needs— like getting out of bed, showering, getting into my wheelchair, and cooking meth in my kitchen.

Anyway, here are a few more facts that might help you determine my disabledness. (Yes, I just made up that word. Feel free to use it, if you want.)

— I’m unable to drive, so I must hitchhike everywhere like a 1970s hippie just before they were murdered by the Zodiac Killer.

(Just kidding. Folks drive me around in an adapted minivan. You know, the kind of car that hauls around eight-year-olds and smells of stale Happy Meals.)

— I’m a patient of the Stanford Neuromuscular Clinic. I am followed by their team of neurologists, pulmonologists, physical therapists, respiratory therapists, nutritionists, butchers, bakers, and candlestick makers. My last checkup was on March 15, 2022. My next checkup is just a few days away.

— I’m attaching a copy of my health record from Stanford, just in case you don’t believe how damned disabled I actually am.

— I work from home a few hours a week as a bookkeeper. This part-time job gives me the flexibility to rest when necessary, and to tailor my work-schedule to my physical and medical needs. I can’t work a full-time job, or work away from home.

— My job pays me $600 a month. You folks at Social Security only give me $596 a month because you think I live in an alternative timeline where everything costs the same as it did in 1958. I use all my money to pay my caregivers. Every. Single. Dime. And it’s NOWHERE near enough to cover the total cost. This is why I sell my body on Craigslist.

— My lung capacity is 42%. Given my respiratory weakness, I am at-risk of severe complications from most illnesses. So, I avoid crowded, public spaces. This is a bummer, yes. But as most people kinda suck, I actually don’t miss this as much as you’d think.

— Oh, and I am unable to wipe my own butt. So someone else has to do it for me. Further, I poop twice a day. I know you didn’t ask this on the form. But, as Social Security seems to want to verify EVERYTHING about me, you might as well know this, too, right?

I guess that’s it for now. Let me know if you need me to provide anything else— like my firstborn child.

Most sincerely,

Elizabette

I recently got a letter from the Social Security Administration asking me to participate in the National Beneficiary Survey (NBS) for those on Social Security Disability. The supposed goal of the survey is to improve programs that Social Security offers and to see how existing services are being utilized. I was “randomly selected” to participate in the anonymous survey. I think this is meant to make me feel special. As if I’ve won some kind of prize— like a free donut.

According to the letter, the policy research company tasked with facilitating the NBS offers a $30 gift card to participants who complete the phone survey. This line caught my attention because I like gift cards. And the fact they were going to give me a gift card for giving my opinion was very enticing. I am a person with many opinions. Further, giving suggestions and feedback is one of my favorite things to do— even when my opinion isn’t wanted, needed, or welcome. So, the fact that they wanted me to give my opinion made this a Win/Win situation for me.

So, I gave them a call. After waiting on hold for a few minutes, I was informed that the survey would take around 50 minutes. That’s a lot of time. And it’s especially a lot of time when you’re a disabled person like me that takes nearly 2 hours to get up, showered, and dressed each morning. But, I did have opinions to share. Lots of them.

I told Lucy, the survey company employee, to proceed. She began by asking me about my disabling condition, which then resulted in me having to spell out Spinal Muscular Atrophy because no one knows what the hell it is. Then, she asked:

“When did you first get a disability that inhibited your ability to work?”

“During the Reagan Administration.”

“Pardon?”

“I mean, I suppose it wasn’t Ronald Reagan’s fault, directly, but I born and diagnosed with SMA while he was president.”

As the questions proceeded, it was very clear that the survey wasn’t written with people like me in mind. This is odd because I’m über-disabled. If you had to give an alien from outer space a stereotypical example of a disabled person, I’d be your girl. But, this doesn’t mean that Social Security sees it that way.

“When do you believe that your disability will improve enough for you to get off of SSDI?”

“Not even the Vatican can make something like that happen.”

“How about in 2 years?”

I launched into a detailed genetic description of SMA, not fully satisfied until I could hear her nails clicking speedily on the computer keyboard in the background. I was determined to make my survey answers the most thorough and detailed she had ever encountered– like damn Tolstoy’s epic War and Peace. I wanted every word I said entered in the record. I was going to earn that $30 gift card.

“What could we do to help you return to work full-time? Job training?”

“I don’t need job training. I have a university degree. I graduated with honors. The main problem here is that Medicare & Social Security Disability Insurance need to cover home-based personal care attendants. The barrier of inadequate home-based care is what prevents many of us with the skills and abilities to work from doing so. How can we work if we don’t have someone to help us get dressed? How can we work if we don’t have someone reliable to drive us there? The faulty poverty-driven Medicaid system inhibits us from bettering ourselves by punishing us for even small advances we make by stripping away the meager benefits we receive. This needs to change. You want more disabled people to work? Make home-care coverage part of the Medicare program. I guarantee you’ll see results from that investment.”

“So, would a job coach help you return to work?”

I began to feel a headache nag at the corner of my temple. I began to seriously regret doing this survey. Just like a woman always regrets getting bangs. While at the salon you think it’s great, you’ll inevitably realize that those bangs will never resemble the rest of the hair on your head. This survey was turning out just like that.

Then, Lucy began asking me about my physical abilities and other aspects of my life. And that’s when the survey became more interesting.

“Can you climb a flight of stairs?”

“I assume you mean without Inspector Gadget’s help.”

“Can you stand and bear weight?”

“Nope.”

“When was the last time you could stand and bear weight?”

“Please don’t make me bring up Ronald Reagan again.”

“Have you served in the Military?”

“HAHAHA! Wait— is that a serious question??”

“Have you participated in the Ticket to Work Program?”

“No. But, I want to talk about the military thing some more.”

“Umm— okay.”

“Can you imagine if I went into a military recruiter’s office and tried to enlist? They would freak the hell out.”

*The sound of Lucy’s typing ceases and she begins chuckling.*

“I should do it. I’m really good at driving my power wheelchair— which is operated by joystick. Therefore, I could pilot a military drone airplane without a problem. So, that means that I could kill innocent civilians just as easily as an able-bodied person… maybe better.”

I glanced at the clock. I had been on the phone for 84 minutes—and counting. The questions went on for a few moments longer, but my attention started to fade until the very last question:

“Is there anything else you’d like to add?”

“Yes, actually. And I want you to write this down. Are you writing this down?”

“Yes.”

“There’s a bill in Congress right now that could address some of the issues I’ve raised in this interview. It’s called the Disability Integration Act. H.R. 555. Those of us with disabilities want to live productive and independent lives. Please help us make that happen.”

She thanked me for participating in the interview, and wished me all the best. Then, she asked me if I wanted the $30 gift card mailed to me, or someone else. Someone else?? I actually had to have her repeat the question because it was so insane.

Does anyone spend 84 minutes on a survey and then give the only good part about the entire experience away to someone else? No. Definitely not. I may be disabled, but I’m not a communist.

Ronald Reagan would be so pleased.