Just fill out the forms, submit them, and wait for the phone to ring, right?

Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.

Not.

I got so excited when I thought about the idea of living on an average of SSDI $1,022.29 per month, or SSI $561.60 per month. Actually, less than that, since “The amount you receive each month will be based on your average lifetime earnings before your disability began. It is not based on how severe your disability is or how much income you have.”

Not. Could you do it?

Why have I spent the last two years using every ounce of energy I have to try to earn a living?  Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.

That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip.  I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with.  

The past two years I have overworked myself – even in a part-time job – enough so that 95% of my time not at work has been spent hermitted away at home just so I would be able to work the next day. This has meant a near complete loss of my social life, a poor diet from no energy to cook, a lack of interaction with the rest of the world, and absolutely no flexible income – actually, negative income. I worked myself all the way to the the line at urgent care and the pharmacy counter where I have faced additional diagnoses and prescriptions that will wreak more havoc on my already weary body.

Really? Anyone who thinks I have fantasies about living off government money for the rest of my life must be crazy. You can read my post, “An open letter to healthy people from a former healthy person”, to see what life is like with a lifelong chronic disease; and this other post, The Work of a Professional Patient, to see how much work we put in simply to manage our survival. I haven’t even begun to blog about the mental challenges I face. To put work on top of it all means I probably really would end up dying or thriving off oxygen and IVs and machines that go beep in a few years – using even more resources than I would on federally funded disability. Is that where I have to be to be considered disabled enough that I can’t work?

Now, let’s discuss a system that uses algorithms and complicated computer-generated results and robots people trained to convince people they aren’t sick enough to be considered sick enough to determine who gets assistance and who doesn’t.  Mind you, I haven’t even begun the process to fight for permanent SSDI or SSI – I’m still stuck on getting temporary state disability to have something to live on while I seek federal assistance.

After a recent phone experience with the California Employment Development Department (EDD), I posted the following how-to list on Facebook and have gotten a good response from friends:

How to get state disability:
1. Fill out paperwork. Have doctor fill out his/her part. Make copies for your records.
2. Send in the paperwork to EDD.
3. Wait.
4. Wait more.
5. Sign the one page of the application the EDD sent back that you somehow missed (this means your application made it to the EDD – one point!). Send back this one piece of paper with your signature.
6. Wait.
7. Wait even longer than before.
8. Lose sleep over the excitement of spending hours on hold waiting to speak to a representative at EDD when you finally get frustrated enough to take on the joyful task of calling.
9. Call. At 8:01am, at the beginning of the day. Wade through the automated menu for 5-10 minutes. The menu that doesn’t have any options for people looking for their claim status. Make up your own menu to get through the menu:
Option A: Push zero a bunch of times. That goes nowhere.
Option B: Choose the menu item that most/least (depending on how much comic relief you need) resembles what you seek.
10. Get through the next automated menu you get to by either picking the option that tells you to enter your social security # or the option that magically gets you to the option to speak to a representative without having to enter you social security # and be told you have no claim on file (duh, that’s why you’re calling!).
11. Now we’re getting somewhere – time to wait on hold for a indeterminate amount of time! Yes, progress, I love America!
12. Hear this message, word for word: “We’re sorry, the maximum number of callers waiting to speak to a representative has been reached. Please call again. Thank you.” Click.

First, thank you for your leadership, partnership, and support of and with healthcare advocacy groups, including the Chronic Care Coalition, Arthritis Foundation, etc. I have attended many of the Sacramento conferences you have attended and even keynoted. What I am sending is a personal story, but you will see that it can easily be applied to many others. I am happy to meet with your staff to discuss policies to alleviate this issue.

As a patient advocate knowledgeable about and involved in local and national policy discussions related to healthcare, and also as someone with Ankylosing Spondylitis, I know very well the feeling of every day being an uphill climb just to manage my healthcare. I also lead a support group for patients with Spondyloarthritis, I have testified and lobbied in both State and National committees, and I write a blog centered around the struggles of people living with chronic diseases. Now, on top of the phone calls to physicians, pharmacies, and insurance companies; I am seeking SDI through the EDD and I am flummoxed. The past four days I have spent many hours on the phone attempting to reach a representative at the EDD to discuss a State Disability claim that was received in December 2015 but not processed. After wading through an automated menu that takes several minutes, a robot tells me there are too many queued up waiting for a representative for me to even be placed on hold and, *click,* I lose the call. A devoted patient, I call back multiple times each day during the times that are supposedly less busy, yet each time receive the same message and the now familiar *click.*

I am not able to work because of my physical and mental disabilities and soon will be homeless and lacking a place or funds to care for myself if I do not speak to a representative at the EDD very soon and find out why my claim has not been processed. I can’t imagine how many more there are like me.

Thank you,

Charis Hill

A staff member of Senator Pan’s office called me later the same day I sent this message. True to my hypothesis, I am not the first to contact his office with this issue. I don’t know what will happen with my state disability claim, but I do know that in the next couple days I might actually get to speak with a person about it – a week after my first call and nearly two months after my claim was received by the EDD.  Unacceptable. I should not have to contact my state legislator in order to speak to a real person at a state government agency. But I have no choice but to accept it and keep fighting. And while I scream a muffled, “Victory!” for myself over my initiative to contact Dr. Pan, I seethe on behalf of the many many many others who call the EDD hour after hour, day after day, week after week, and finally give up and become homeless, hospitalized, and/or a burden on their families.

There is such stigma around being anything less than healthy and needing help with basic survival, and it begins with a system that has institutionalized able-ism, the (un)American ideal that hard work guarantees happiness no matter who you are, so deeply that those who truly need help learn to assume our roles as apparently-less-than and accept that we’re just not worthy of actual help. So deeply that many people who are healthy and able-bodied are convinced that it’s too easy for people who are “less-than” or “lazy” or “acting” or “abusing the system” to get government hand-outs.  We disableds should just try harder and pitch in like the rest of the people who see no reason why we shouldn’t work ourselves into an early grave. So maybe that helps explain a little about why we fight so hard to appear like we’re fine, which maybe perpetuates the reasons many people blame us for sucking the system dry – when you see us out in public, we have our game faces on. Because if we don’t, then you’ll tell us what you think of us.

So, EDD, you ready to play this game?