SSDI: Everyone’s a Little Bit Disabled

March 12, 2012 at 2:35 pm (Disability, Living With Chronic Illness, Mental Health) (, , , , , , , , , , )

“You’re a little bit racist, well, you’re a little bit too!

I guess we’re both a little bit racist – admitting it is not an easy thing to do.”

-Avenue Q

For those of you who aren’t familiar with Avenue Q (and you should be, it’s delightful), you might want to watch the rest of the song so you fully understand the sentiment I’m sharing here.

I’ve been doing some research about Social Security Disability Income (SSDI). It’s not a well-known fact that I don’t receive SSDI as of now. Part of the reason I haven’t pursued it is because I’m in a situation where most of my financial needs are being met by my spouse. However, there is a deeply rooted part of me that hates living off of someone else’s income. It seems unfair that when we met, I was working 40 hours a week at a corporate job, and now things are, well, much different than that. I’d also like to worry a little less that if Ninja got hit by a bus tomorrow, I’d be homeless. Silly things like that.

However, as you may already be aware of, getting SSDI is one of the most difficult things a person can do, in terms of interacting with a government agency. If you thought it ruins a day when you have to deal with the DMV, well, interacting with anyone involved in the SSDI process is exponentially worse. You’d think that something designed for people incapable of earning an income through working for someone else wouldn’t be so much like, well ,work. It’s a controversial subject among the disability community, especially among those who suffer from “invisible” illnesses, because some people sail through the process with little friction and people equally qualified go for years filing appeal after appeal after appeal and barely being able to keep up with their medical bills in the meantime. Some people believe that everyone, regardless of disability, is rejected the first time – as though the government wants you to prove that you really want it and are willing to jump through the whole process twice to get it. My mother, who had suffered two heart attacks, kidney failure, osteoporosis so bad that she broke bones just walking around the house, was denied the first time.

Many disabled people attempt the first filing on their own, which may explain why so many are denied on their first pass. After all, no claim to SSDI is even valid unless you’ve experienced whatever disability keeps you from working for six months. So while you wait the six months to pass, and you’re forced to either cut hours, or get fired/quit due to illness, you’re expected to then somehow have enough stamina, energy, and most importantly money to hire someone to walk you through a process that appears from the outside as filling out a bunch of forms. You think to yourself, “I can fill out forms!” But when you get rejected, it becomes clear that there is more to this process than the forms.

Most success stories I’ve heard of include obtaining a lawyer who specializes in SSDI. Most SSDI lawyers take clients under a contingency fee; when your claim is accepted, you’re usually given a fairly large check to cover “back pay”, and the lawyer takes a giant chunk of that check. However, because they’re working under the assumption that you’ll win, they are incredibly picky about who they’ll take on as clients. I’ve already spoken to one who rejected me over the phone because I don’t have a diagnosis. It took him all of five minutes to decide I wasn’t worth the risk. He actually suggested that I file on my own, that no lawyer would take me on contingency since I don’t have a declarable disability.

Why has this process become so difficult? Why is it that in order to obtain services that can be life saving to those in need, we have created this labyrinth of legality and paperwork in order to have an experience most people find demeaning – having to accept money from the government because we are incapable of doing something expected of every human over the age of 14?

My most optimistic answer is this: Because everyone’s a little bit disabled.

When you do research on SSDI, it’s not hard to find yourself reading incredible stories about people claiming disabilities that you might think of as being part of everyday American existence. One of the most controversial is obesity; in some courts it is outright ignored and you may possibly be sited with contempt of court if you continue to file for SSDI for being overweight or obese. Psychiatric disorders are another controversial area in regards to SSDI, as there’s a very nebulous area between one’s mental illness having very little impact on a typical workday and requiring full time inpatient care. According to some, there’s an increasing rate of people claiming depression as a disability, wherein their depression stems from not being able to find a job in this economy. So I need SSDI because I’m so depressed about finding a job that I can’t find a job? The word “entitlement” gets thrown around a lot, because some people do have a sense that if they pay Social Security while they’re working, all they’re asking for is the ‘right’ to access a program they helped fund.

I thought about including links to cases where SSDI was awarded for some pretty odd claims, but honestly, I don’t want to sit in judgement of others (at least in a public forum). I’m sure that there are people who will read this who think the fact that I am considering applying for SSDI to be a little entitled; after all, I’m not hungry/homeless/naked and I seem to have enough money and ability to travel to many events along the East Coast as well as teach at them. So I will sit this one out.

The intersection of experience from my point of view is that it’s very similar to getting accepted to and being in the pain management program. It took some time and legwork to get accepted, and I have to live by some pretty strict rules that sometimes feel draconian and/or unfair. Most of these things exist because of people who need opiates to fuel an addiction, or as a profit revenue, rather than to treat pain. As time goes on, the rules become more stringent, and those bent on circumnavigating those rules become more crafty, and the people who end up paying the real price are the patients who need the medication for pain-based conditions*. This is also why the SSDI process has become so complicated and negative; there are many people out there who either fraudulently or honestly believe that they deserve SSDI for their disability, and will find ways to game the system until they get it. (For some people, SSDI is more lucrative than welfare and has less restrictions on supplementary forms of income. For example, you can work a very part time job while on SSDI as long as it doesn’t require you to perform tasks that fall under your disability, and you can’t make more than a specific amount each month. On welfare, if you obtain a part time job, you are much more likely to be dismissed from the program.)

There is also the doctor conundrum. In order to get into pain management, or to obtain SSDI, you need to convince a doctor to recommend you and state their findings on paper. So it means making an appointment with someone and trying to convince them that this is something you really need. Some doctors just don’t play – many GPs/PCPs will defer that sort of thing to a specialist, and they’ll happily give you a recommendation but they won’t do the legwork themselves. Some specialists will then further refer you to a specific specialist whose practice focuses on people who need this sort of service. In my experience attempting to get into pain management, I ended up seeing  a specific rheumatologist that I had never seen before, who gave me a quick exam and declared that although she was sure I didn’t have fibromyalgia because I didn’t have the diagnostic tender spots, she would happily recommend me to the pain program for a small fee. And lo and behold, when I arrived at the pain management doctors, my diagnosis was “fibromyalgia”.

Recently, I heard a couple of stories about a rheumotologist whose patients were readily being denied SSDI because he had garnered a reputation; as one judge put it, “He thinks everyone’s disabled.” I don’t know if this is because he was a ‘pay a fee, get a rec’ sort of doctor, or if because he was a fibro specialist his practice had a larger volume of people so crippled with the disease that they needed SSDI. It doesn’t matter, because now the courts in his area regularly throw out his recommendations, so he’s stopped giving them and instead refers to another doctor.

My pain management specialist is a ‘pay a fee’ guy; I feel ethically dubious about it, but I’ve taken advantage of it too. He will approve you for handicap placards, or SSDI, or adaptive technology, if you pay a fee to have his office do the paperwork entailed. Now, again, I’m not sure if this is because he believes that once you’ve passed through the hurdles to be seen by him, you’re likely qualified for what you ask for; or if he’d actually say no if he thought someone was scamming; or if it’s a lucrative side business that circumvents the insurance (of course these fees are not covered by insurance!).

Anyway, I’ve really digressed from the thought that inspired me to share all of this with you. I know people who have received SSDI who are capable of working in some capacity. Because the other part of the challenge of getting SSDI is not that you’re too disabled to do whatever job you were doing before; you have to prove that you’re incapable of doing just about any job. So even if you’ve worked on a farm all your life and now you can’t, if you can still physically withstand the rigors of being a file clerk, that will come up in your court hearing. But as a society, we become more compassionate and politically correct around disability, we’re also softening some (not all) of the stigma that comes with the disabled label. Therefore, it becomes morally easier for someone to look at their body and find things that are wrong with it, declare themselves disabled and then seek out SSDI. I know that I was offered state government assistance to apply for SSDI back when I was suffering from mental illness enough that I was in a day program. For me, the stigma was enough to make me go out and get a job and leave treatment. I wanted to prove to myself and others that I was not too crazy to work. Was I really? Nope. I was capable of holding down an temp job that asked very little of me other than typing and Fed-Exing.

I think there are some experiences that are almost universal, that qualify some people for SSDI. Pain. Depression. Anxiety. Back problems. Hyper/Hypoglycemia. It’s all a matter of degrees, and that’s where the governement has to make a judgement call. It’s hard to rule one person’s experience of pain more severe than another’s when they’re both reporting an 8 out of 10 on the pain scale. I mean, my 8 and Ninja’s 8 are totally different, because our life experience of pain is different. I feel like because I haven’t experienced childbirth, some doctors don’t take my higher numbers seriously because childbirth is often used as The Holy Example of what 10 out of 10 pain is (and for men, it’s usually a large kidney stone). And it’s hard for a doctor, a lawyer, a judge, a clerk to know how much depression is enough. How much pain is enough. Who is cheating the system, and who just doesn’t understand what disability is really like? Who is so desperate for income that they feel they must lie, and who is desperate for income because waiting six months to prove their anxiety is bad enough that they can’t work a regular job?

It’s an incredibly difficult situation, and regardless of how you feel about the Social Security Administration and its role in America, I hope you can see that its sword cuts both ways. For as many times as you hear about someone who may have gamed the system to get benefits, there are just as many stories of truly disabled people who are denied time after time.

*I changed this wording from “real conditions” to “pain based conditions” because I believe addiction is a “real condition” that requires treatment, just not opiate treatment. But as I strive to use as inclusive and compassionate language around opiate addiction, even when it frustrates me, I decided this change was necessary.

I ask that if you comment on this post (preferably here, but even on the social medium what brought you) to be compassionate in your reply. I know the SSA is a hot button political topic, and there are many people (even in my social circles) who would dismantle the whole thing. I’m not forbidding you from sharing your thoughts and feelings, but do it from a place of understanding that this is what we have to live with now, and there will be people reading your reply who may be in legitimate situations of need.



  1. Kel said,

    I believe we don’t often hear good SSDI stories and I am guilty of not having told mine. My daughter has psychiatric issues and I applied for her to get SSDI shortly before she turned 18. I didn’t use a lawyer and fully expected to be turned down. However with her list of doc visits and hospitilizations she was approved. When I met her SSDI caseworker she said the documented history is what made the approval easy. On th flip side her father has been turned down ~ in part because since his heart attack last fall he hasn’t seen a doc. I wish you the best of luck on this path, I know it isn’t easy or fun, but the security (for my kid, and for you) is well worth it!

  2. Eric S said,

    My brother was accepted on his first try. My friend who words for SSA says that means he had to fit every definition perfectly. We have no idea who helped him or how he did it. We just know it happened.

  3. panoptical said,

    This post reminded me of some Judith Butler stuff I read a while back… I think it was in “Giving an Account of Oneself” – one of the things she talks about is how people have to self-report and self-describe for a number of government and health-related things; how those self-reports could be shockingly intimate and humiliating; and how the process of deciding what to report and trying to fit yourself into some government category – for whatever reasons – dehumanizes and oppresses us.

  4. Deborah Friedman said,

    My case is the standard invisible illness nightmare resolved by very good and expensive lawyer one. System is broken!

  5. monkiss said,

    Different government and different country, but I just went through something similar and it effin sucks. My poor mother in law has been trying to support me and my spouse.

  6. Bridget Jorden said,

    In my experience, SSI isn’t just about income, it’s about access to proper medical care. Tally up how much you’d pay in copays vs. income, and sometimes it doesn’t pay nearly enough to work. I have a friend with a disabled child in this situation. She is waiting to begin her career once he can have his SSI in his own name because if she took a job with private health care, the copays for his treatment would wipe their family out.

  7. Renee said,

    I know two people who were approved for SSDI on their initial application. Neither application came from a city (one came from Maine, one from Pennsylvania), which I consider relevant. Both were men who could have submitted probably hundreds of pages of opinions, exam records, test results and other documents demonstrating “objective” evidence of significant physical (and in one case also mental) limitations. Both had pretty freakin’ devastating diagnoses. Even so? I was surprised that they were granted SSDI benefits without filing an appeal.

    Years ago I put together a disability appeal as part of a pro bono project assisting MFY Legal Services in NYC. Even as I was doing it, I was told to keep in mind that we’d likely lose the appeal (it was a severe spousal abuse PTSD case, severe to the point of including somatic symptoms). That was important because I needed to put together a record that would be sufficient, by itself, for the claimant to win on her further appeal to the federal district court. (I’m proud and relieved to say that she did.) That — knowing that many, if not most, claimants with true disabilities would not even win on their initial appeal — was the state of the Social Security Administration in the early 1990s. I wish I believed it was different today, but I don’t.

    What I *do* believe is that, to the extent that a potential claimant can control where they’re applying from, it’s in their best interest to not live in a city when they apply. Live in a small town in Maine, or Vermont, or Nebraska, or another city and state that has far fewer claims to process than NYC (or likely DC, or even MD or northern VA in general). I believe it is best to find someone familiar with the process to fill out the paperwork. I believe that it’s important to include as much medical information as possible; not only letters from multiple doctors, but test results and other supporting documentation whenever its available. I believe that it’s useful to be familiar with the Social Security Administration’s Blue Book, or list of evaluative criteria for disabilities, before filling out the paperwork (hence the importance of hiring someone, if possible) so the claimant can use the SSA’s own preferred language to state the symptoms of and limitations caused by the disability. I believe that, even if a claimant does all of these things, they still very well could be denied on their initial application.

    One thing you didn’t talk about was time. Not only do you have to wait at least six months before filing, in some cases (such as with certain mental disorders) you can’t file for at least 2 years post-diagnosis. Even after that, it can take months — even a year or more — for the SSA to review and decide on the initial application. Then there’s a very limited time (on the order of a month or two) in which to appeal … followed by yet more waiting for the decision of the admininistrative law judge. I wish I could recall how long it took for the case I worked on to be decided by the district court; I suspect it was about a year or so after I first got the case and began working on the appeal, though it could have been significantly longer.

    How’s the claimant supposed to live during that time? Good question. If the person only has a “partial disability” and is capable of doing some work for pay, maybe they can earn enough money for food. But, in that case, they can’t qualify for SSI and Medicaid benefits — not to mention that they probably can’t afford their own housing.

    It’s my not-very-humble-at-all opinion that the SSDI system is not just broken but in ruins. The only way many people survive to see their benefits is if they are lucky/blessed enough to have family/friends who are willing to house and support them during the process. (The other way is if they were lucky enough, at the time they became ill/injured/otherwise disabled, to work for a company that provides extremely good not-necessarily-workplace-related disability benefits — and to have been subscribed to them. I suspect that, these days, those people are few and far between.) There needs to be some better process, some better way for individuals with significantly disabling disabilities to receive support during the whole SSDI-application ordeal. I’ll be the first to admit, however, that I have no real ideas of how to accomplish that on a society-wide level.

  8. allura said,

    I am currently trying to get SSDI. I had back surgery in Nov, looking at possibly another soon, depression, anxiety, PTSD, Fibro, Diabetes type 2, sleep apnea, difficulty concentrating and remembering, due to being medicated every day to the point that I run short almost every month and hearing loss. I go back to my back surgeon on 8/21. I can no longer safely drive. I know that you have a much more difficult time, but all I can say is that I get what you’ve been saying on this blog. I just sent back in a huge packet of paperwork about work history and how I am “limited” in activities. I just wanted to say that the frustration is real, and can be triggering for people who suffer from emotional/pysche issues. Bad enough to be a burden on those you love, now you have to prove how much pain you are in and all that goes with it. I used to read you on LJ, and when I saw your post last night/early am, I began reading this blog. I think you have quite a bit of intelligent things to say, and I hope that I can take away at least some wisdom from what you have shared. Thank you for using some of your energy to do the blog.

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