Getting Approved for Disability Benefits Shouldn’t Be This Hard

I keep having people say how “lucky” I am to have had a chance to speak my piece. That it all went exactly as it should have and if I was meant to speak the whole time, then that was that. But they easily misunderstand the situation. They think I was prepared to say what I did. They think I am so well articulated in my writings that they easily would have transferred to my disability hearing.

But they would be so wrong.

Obviously, I am an articulate person by nature and a fast talker who often leaves the listener chuckling at least once within five minutes of our crossing paths. But that is not the me who would be found at 8:30 a.m. when my hearing took place.

No one can comprehend how belittling the whole process is unless they have overcome it themselves. Right from the start, they demand all of your doctors appointments to be typed, printed out and there for whoever to see. You pass secretaries who type it up and submit it, you face unknown beings who read through each page looking for mistakes to deny you, and you even have to face a doctor of their choosing who is in it for the money and treats you no better than something slightly under cattle in my experience.

As I was leaving, the only reason the young and emotionless doctor even glanced at me for the first time (despite having looked me over for 10 min.) was after I said, “I was so worried you would have to touch me and cause me more pain!” For the first time I actually saw him looking at me, right before he closed the exam room door. I ominously knew this was only the beginning of being treated like this.

So many people have tales of being denied for years (typical approval rate is 35 percent)! How the heck is this OK?? For years of our disabled lives, when we needed help five years ago, but finally got the courage to ask for the help, we still have to struggle as days go by and health gets worse.

The “denied” letter was so bad  I sobbed into the phone to my mom at work. They word it so carefully so as to thrust in the knife and twist it even past hurting. They make it abundantly clear you are a speck of dirt that has bothered them so rudely to dare ask for financial help.

But the thing no one warned me about? How horrible it is to go little detail by little detail about how you have trouble putting on your underwear or going to the bathroom. They specifically ask you for in-depth explanations of how you can’t shower every day — which is a hugely embarrassing thing for society as a whole. My first month, I had conversations with 50 people in age ranges from 30 all the way to 70 and 80, and they asked how I stayed clean because they were afraid, embarrassed or even disgusted with themselves for having these issues. I have a lot of brands and tricks up my sleeve and I had to detail that myself in the 14-page disability questionnaire about my own struggles. Some things I hadn’t even told my family because it is so hard to admit even just to yourself your life is speedily going downhill in the health department and it crushes your tender soul to have to tell another person the details. Discovering these things for ourselves is devastating on its own, let alone being forced to write it down on paper for some unknown group of strangers to read and judge us by.

Imagine you have to write at least one page on your deepest, darkest shame or secret.

“In detail!” they demand.

“And how do you feel about that?” they ask with disdain, like you are a bug to be smushed.

The space they give you to write everything out for said unknown people to read is barely one line! And yet they are asking for details that could easily fill 24 lines, but you have to fit it in one line. One wrong thing and you are denied again. And do they give explanations for why you were denied so you can fix it? They definitely do not.

After my third denial, I was finally told, “Oh, ma’am, you have to have a lawyer.” What? I had never nor did I ever want to have to hire a lawyer in my life. I knew they took a lot  of money and the whole reason I was doing this was because I needed financial help!

“Don’t worry, they only take like 15 to 20 percent of the money you win, and only if you win.” I was in no way willing to share my financial help with some stranger who would take credit after barely helping me at the end of my appeals! I had one last chance to plead my case, and despite getting this far clueless and alone as I researched all about the process, I now had to find someone to simply stand before the judge and tell them my troubles. Nuh-uh!

One blessed comment was this lady who told me I could find a place where they would do it for free (AKA pro bono). I searched, but came up dry. I only found one because of this amazing woman in my church happening to hear I was looking for representation who gave me a name. That name was attached to a wonder woman representative who had years of doing this under her belt. With nerves and trepidation, I kept putting off calling until finally I got a wild wind of courage and next thing I know she pencils me in for that Friday to meet with her.

She talked herself up telling me she can do it for me, easy as pie. Next thing I know, I have my own representative for the ornery requirements of going before a judge with someone other than myself to state my pain.

Time passes and the representative does nothing but call to see where my paperwork is. My hard-written papers get into the system just in time for COVID-19 to rear its ugly head. Quarantine begins puts things slightly on hold. No big deal for me, I am disabled so I can’t do much anyways. I have lived 25 years in my childhood room and have had to learn to keep my sanity with extreme pains added on.

Finally, the day of my phone call hearing came. I hadn’t heard from my representative in two months. I sent a text letting her know I was by my phone for the hearing in 27 minutes. Despite telling me she would do all the talking, she calls and tells me I can do it all since I “articulate well.”

What?!

I go into full-on freak out mode. I tell myself, “Deep breaths, in and out, breathe Tierra, breathe!” When my mom calmly heads into her room, I let myself sob for a minute or two and realize it is all on me. I had researched and luckily prepared what I would say to the judge. I also had written down a few points I wanted made. Suddenly, those were my lifeline. The phone rang.

I had a well-practiced judge, so he knew what to ask me and it turned into a nice chat where I told a complete stranger how I have trouble dressing, I can’t shower, I even have trouble going to the bathroom, but thank you very much, please give me disability! My rep didn’t talk at all even when the judge gave her a chance to do a final statement in my behalf! “Gosh, I am glad I am not paying you,” I thought.

We are still somewhat up in the air about what my ruling will be, but it is over. After two long years, suddenly, I can breathe! So, what would I say to everyone who tells me it all works out as it should? I would say, “Perhaps, but hours of research and confessing all my darkest struggles with daily life to a disembodied male voice on the phone does even more!”