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To Legislators, From a Citizen Waiting Two Years for Disability Benefits

Dear Legislators,

I’m going to assume that most of you have never needed to apply for Social Security Disability. There may be a few of you who have an injury or illness that might require accommodations, but I would guess that most of you don’t come from a place of relative poverty and need to prove your disability in a courtroom.

Because I assume that most of you have never needed to apply for such a “benefit,” I would love to offer you a few details about my application process, so that you might look at this system critically, and consider what changes might be made.

I understand that balancing a budget with huge amounts of debt is difficult.  I understand it more
than you know, since I took out huge loans to fund my education, which is now basically useless, and my debt far exceeds my income, like by 200,000 to one… because I don’t think, statistically, I can say 200,000 to zero.

My income is zero.

My income has been zero since the date I applied for Social Security Disability.  That date was 24
months ago.

24 months.

Are we clear that I have been waiting for 24 months with no income?

And here is the kicker: I am only one of a couple thousand people in my state waiting in this same manner.

When I first considered applying for Social Security Disability benefits, a social worker at the hospital told me repeatedly that I needed to be aware it could take years for me to receive those benefits. I thought that was probably a worst case scenario, or a cautionary tale. Now I know it is simply the truth.

The social worker also told me not to secure legal representation until after I had been denied benefits the first time.  Apparently, nearly everyone whose condition is not terminal gets denied the first time, without fail. I prepared for it. I knew I would be denied. And then I wept when the decision came, even though I had thought myself prepared.

The thing is, I had jumped through hoop after hoop after hoop to get that denial. I had to write down page after page of information, even though my dominant hand and arm resided full-time in a splint. I was required to return paperwork in mere days or have my application denied, while the state took between 30 and 90 days for each and every determination, question, or document-gathering act. I was told I needed to see a doctor in a suburb, even though I don’t have transportation outside the city. That doctor never laid a hand on me, and his decision was that I could do “some unskilled labor” because I was able to lift my arms up for a tenth of a second.

Nevermind that I was applying due to mental and physical ailments that are invisible and don’t limit me completely on all days and at all times. Nevermind that the determination for fibromyalgia is based on how many reactive tender points the applicant has, and he didn’t press a single point on
my person. Nevermind that PTSD has nothing to do with the ability to lift your arms over your head or out to the side.  Nevermind that I have a “team” of care providers who have documented over and over and over that my symptoms are debilitating enough to keep me from working a full-time job.

So, yes, after all of the many papers and mailings and phone calls and things they said I did “wrong” — didn’t sign with a witness, didn’t include the cover sheet nobody said was required, etc. — I was
inconsolable after my first rejection. And then I got back up off the floor, called the hospital social worker, and started researching attorneys that might assist me.

The first lawyer who agreed to take my case was not someone I trusted.  He tried to make me cry.  He told me to bring all of my many medications and then proceeded to tell me carrying a backpack full of medicines made me look like I am not disabled. He told me to fake bad days on the days I am doing a bit better, because otherwise I won’t sound disabled enough.

Disabled enough? What does that even mean? Either my illness impedes my work, or it does not.  And it does. There is no need to fake anything. The only thing I ever fake is a smile, because I know  our society hates and avoids any sort of suffering and judges me for being less than perfection, in so many ways.

The second lawyer to take my case was kind and compassionate and seemed more honest. He understood my struggle, he cared about my pain, and he believed that my medical records alone express disabled status. I don’t need to pretend to be more sick than I am. I’m plenty sick. My doctors attest to it in every note written.

Legislators, I would like to remind you that disability lawyers only get paid when your case is “won”.  So when two lawyers agreed to take my case, it’s evidence that I have a legitimate claim for disability benefits.

I would also like to point out another flaw in this system. I’m not eligible for SSDI, only SSI, because I didn’t fit the pattern of full-time worker with benefits for most of my life. I was mentally ill, a single parent, and working diligently to finish college and attain graduate degrees for many of my adult years. But I cannot get the full benefit that many receive, no matter what, because the system claims I didn’t work enough. I was incapable of being hired for anything but unskilled work because I didn’t have an education, so I worked part-time to be able to get an education. Because I didn’t work full-time, I didn’t put enough into the system to take out SSDI, so I applied for SSI. But then they tell me I can live off of some unskilled work, so I cannot have SSI. Does anyone else feel like a rat in a maze?

At the law office, I was told that each and every lawyer who works at the firm needs to be contracted with the SSA going forward. I had to sign every document six times over, because six attorneys could potentially do work on my case. If an attorney for whom I did not sign paperwork does anything to prepare my case, the SSA can deny my disability claim. I signed papers for nearly an hour. Six of these, six of those, six of the other.  It was ridiculous.

And then the law office put in my request for reconsideration.

Reconsideration basically entails filling out every paper again, this time with your lawyer consulting
on your answers. I have graduate degrees. I didn’t really need to have an attorney checking my work, but I did, because that is what was required. And then, after going through the whole process again the determination came back the same. They said I could do “some unskilled work.”

So, we filed an appeal and requested a hearing, in a courtroom, with a live judge. And now we wait.  Month upon month upon month we wait. For my lawyers, this is not much of a problem. They are
lawyers. They have income. For me… I can’t recount what that means for me without tears.  I don’t need to fake them, bad lawyer whom I didn’t hire.  They are very real.

For me, waiting month after month without income means begging and pleading and crying and stressing out and feeling useless. It means struggling with my value as a person and considering whether living is even worth these challenges, or whether ending my life might be a better option.

24 months I have waited.

24 months I’ve jumped through hoops.

24 months I’ve begged and pleaded and cried.

And it isn’t over yet.

My attorneys say to expect a hearing date sometime in the spring of next year, another six months from now. It may be 30 months of living without income by the time I receive the benefits I qualify for, according to the Social Security Administration’s own guidelines.

Do you want us to give up? Do you want to weed out the ones “faking” disability?  Do you want to reduce fraud and lower the SSA budget?  Do you want us to die? What is the goal here?

Is the goal to provide a safety net for those who cannot manage to live without supports? Because if that is the goal, then you are failing. Over and over and over, thousands of times each year, you are failing.

You have failed me. I live only because of ever-increasing medication for depression and anxiety and the generosity of friends and family. But those people cannot fund my life for the rest of my life.  That is why we have state and federal programs, to help those who cannot live without aid. If the system that is designed to help me when all else fails, does fail me, then what? Where am I to turn?  What am I to do?

Imagine for just a moment what it must feel like to live with no income for more than two years.
Imagine what you might lose in that time. Imagine not being able to pay your mortgage payment and your car payment and your children’s tuition.  Imagine also enduring excruciating physical and psychological pain. Imagine that you reach out for the help the social safety net promises, only to have that net pulled away as you plummet head-first toward the concrete floor.

How might that feel?

I can tell you that it feels like a betrayal. It feels like a conspiracy. It feels like nobody cares if you live or die.  It feels like being sick is blamed on the one suffering through the sickness. It feels like this is the home of the free and brave only if those free and brave remain well and without defect.  It feels like thinning the herd. It feels like you are the one fighting the hardest to keep up with the pack, but you are being sacrificed to the jaws of financial ruin.

I have two maxed out credit cards. I have seven dollars in the bank. I have tens of thousands of dollars in debt. I have a housing voucher and SNAP benefits that are just enough to let me live in a bad neighborhood and eat processed carbohydrates, not enough to be safe and sated. I have the constant thought that death is what you want from me and for me, because why would you design a system that leaves me in such a desperate space for so long a time if you want me to survive — just survive, and certainly come nowhere close to a place where I thrive?

So, legislators, when is the last time you considered the thousands of men, women, and children who are disabled? Why have you let this ludicrous treatment of our country’s sick and “weak” and poor continue for such a long time? Do you think I deserve this fate, because I had the audacity to develop life-altering, debilitating illness? Do you think all of my 17 medical specialists are wrong or colluding to misrepresent the effects of my illness? Do you think waiting 30 months for help would be acceptable under any other conditions? If I were having a heart attack, or my home was flooded to the ceiling, or if someone shot me in the leg, would you tell me to file some paperwork and then some more paperwork and then hire a lawyer and then file more paperwork and then wait another two years before you can help me?

I often bring up the idea that if I were being tried in criminal court, I would be allowed rights to due process. Not so for the disabled. We are left waiting. We are left hoping, then losing hope, then
rallying once more and hoping again, then begging, then crying. We are left in our struggle and without the security that the Social Security Administration is meant to offer.

The name “Social Security Administration” literally spells out the job of the office. But that office is not doing its job. We have failed to meet the mandate set forth in the name of the office. And if there is no security for those in our society, we are failing as a society, as a country, as a developed nation.

I need security. I need it because I cannot work enough hours to pay for my basic needs due to
illness. And while, if we win the case in the spring, I will be owed 30 months of meager payments in one lump sum, the damage done during the waiting won’t be undone by $737 a month.  Not only can that amount not provide security in the city of Chicago on a monthly basis, but the months of past due bills and credit card balances and interest charges and fees don’t disappear when I am sent that first check. That money will be gone the moment it arrives, because I have not had financial security for so long a time that it is impossible not to be indebted.

The psychological challenge of being without security for years will not be easy for me to overcome, either. Feeling like you have no value, like you do not matter, and like you have been abandoned by the nation you call home takes a huge toll on a person. Those of us waiting on the SSA for security due to disability are already carrying heavy burdens.  We don’t need the waiting to make things worse.

I propose a system that offers help to those who need it. And yes, I propose that the healthy pay for the survival of the injured and ill. Because that is what a society should be — a community that cares for one another. Every man for himself is not “the American way” or “capitalism.” Every man
for himself is anarchy, not society.

Look at the ways the SSA is not providing security. Look at the ways funds are misappropriated by
spending them on people who are already financially secure. Look at the faces of the people who are
asking for help, and see the way you add insult to injury by not reforming the social safety net and offering tangible aid to those in our society who need it most.

Let go of stereotypes and preconceptions that don’t represent the truth of living with disability, or living in poverty, or living as a minority. Let those who need help attain it without all of the hoop-jumping demands. Don’t make us wait 30 months.

Create change. Do good. Represent all your constituents, not just the wealthy and the well.

Offer security. It is, after all, your job.