The Shame of Disability

The process of obtaining Social Security disablity benefits is soul-depleting.

To be awarded disability benefits, claimants must disclose their entire medical file to the Social Security Administration, and must prove an inability to perform any job whatsoever on a sustained basis, in a competitive workplace, no matter how simple and undemanding the job might be.  Moreover, this impairment-related inability must have lasted at least one year.

Most people find the process positively humiliating.  It is demeaning to Unhappy Woman Hiding Her Face With Hand On Itstand before a court and admit that you are, in the words of a client, “a huge loser.”  The process affords little opportunity to save face.

The vast majority of claimants come to the process after having tried absolutely everything to avoid it.  Many have exhausted their sick leave, their savings and retirement accounts, and the good will and charity of their families before even making the application.  And, after having put off making the application for as long as possible, they discover the process can take many, many years before they are granted benefits – if granted benefits at all.

Having delayed applying until already financially depleted, claimants court homelessness, and often become homeless.  They “couch surf” with friends and relatives, straining those relationships often beyond repair.  The most fortunate of claimants wind up in thrown-together apartments in the basements, or garages, of friends or family.  When someone has no family, they fare much, much worse.

One client without the benefit of a family to take her in, lived “down by the river.”  She came to me bigstock-old-broken-bike-26064467excited one day because she had found an old bike frame thrown out, and she had dragged her sleeping mat onto it so that the mat was off the ground and didn’t draw up moisture.  I couldn’t imagine how uncomfortable it would be to sleep on top of a bike frame, but for her it was a home improvement that delighted!

For all the years I have observed people trying to keep body and soul together while waiting for a favorable resolution to a disability case, I have yet to understand how they live on absolutely no money at all – sometimes for two, three, five … years.  They ask, “what am I going to do?”  I have no answer.

There seem to be different strategies for managing pennilessness, depending on how well-off one is to start.  Once any savings are drained, the retirement funds go next, then selling automobiles, furniture, personal effects, usually selling the family home, or losing it to foreclosure, borrowing from family-members, and friends, moving in with relatives, applying for food stamps, for Unemployment Benefits, going to food pantries, sleeping in parks, knocking on the doors of churches ….

It is humiliating.bigstock-Woman-Depressed-Series-27253388

This is the reality of disabilty.

The myth of disability is that it is easy to obtain, and rife with mildly-impaired scammers.  For that myth to persist, one cannot know how long it takes to get disability, the personal information you have to divulge to the Social Security Administration, how hard it is to prove, and how absolutely difficult life is for the years during which a case is pending.  Also, for the myth to persist, one cannot realize how little the financial gain is on the other end.

Claimants insist to me they are not “one of those scammers,” but, in fact, “really need this.”  The need to differentiate themselves from the negative mythos of disability is very real.

stop pretending and faking. Face reality or truth and stop telliDespite the fact that disabled people want others to conclude they’re not “one of those scammers,” they will not fully divulge the medical problems, and functional deficits they have that cause them to need disability benefits.   They minimize their diagnoses, symptomology, and functional deficits because … it’s fantastically embarrassing not to do so.

Wouldn’t you do the same … if I were to ask you, “what’s wrong with you?”

It is nearly impossible to save face in the process of proving disability, but people naturally try to save face as much as possible outside of the official process – in what they say to friends, neighbors, even their doctors … and definitely reporters.

A National Public Radio / Planet Money story done by Chana Joffe-Walt Portrait of a school teacher sitting at a desk with a blackboardairing in March of 2013 on All Things Considered and This American Life missed this fact about human nature.  Ms. Joffe-Walt took as fact things said as if their being said made them true.  She failed to burrow down into the facts, even by doing something as basic as reading an actual decision or two written by Social Security judges, to make sure that what she was reporting was the truth.

Ms. Joffe-Walt interviewed a retired judge, Sonny Ryan (not a Social Security Administrative Law Judge) who said he’d asked a man in his courtroom why he was on disability.  The man claimed he was on disability for high blood pressure and diabetes.  Ms. Joffe-Walt, just left it there – as though it was true … that a man was receiving Social Security disability benefits only for hypertension and diabetes.  It must be true – a former judge seemed satisfied with the answer, right?  I guess that’s why Ms. Joffe-Walt didn’t find the actual man, read his favorable decision, to see if it was actually true.  If she had, she would have learned that he was not receiving disability benefits for hypertension and diabetes.  There’s no way he was on for hypertension and diabetes.  I will grant that he likely said he was on for hypertension and diabetes … but he was not.  I would bet the title of my truck on it.

bigstock-Portrait-of-funny-surprised-wo-36732706Instead of journalism about the disability program, and the people receiving disability benefits, the listeners of Planet Money, All Things Considered and This American Life got mere speculation … gossip really, cocktail-party banter – misleading and inaccurate – in a week-long, long-form series, no less.  National Public Radio has not retracted the story, nor aired anything on the subject more thoroughly investigated.

It is common for disabled people when asked why they are on disability to reveal only the least embarrassing ailments to explain it.  So the explanation is about the bad back, the bum knee, the diabetes, the hypertension, but carefully excludes the truth of the cognitive impairment, the severe fecal incontinence resulting from a prior bowel resection, or the debilitating panic disorder.

I once represented a person who was mildly mentally retarded, and had an anxiety disorder – likely from being relentlessly bullied while in school for being “slow.”  Despite those challenges, she had an impressive work history having worked for decades as a cook, a job that required frequent heavy lifting of water-filled pots.  She suffered a serious crush-injury to a hand that required numerous surgeries.  At the end of all the surgeries, and rehab, the hand remained functionally inadequate to the task of lifting water-filled pots; she was unable to do her past jobs.  Then, in middle age, and with significant cognitive deficits, she was unable to transition to sedentary work.  After two failed applications for disability benefits, and several years of trying, she was finally found disabled, and granted benefits.  She was finally, and mercifully, off the streets and safe.

If you were to ask this person the reason for being on disability, she would tell you it was her hand.  And she would be wrong.  The injury to her hand alone is not disabling.  The mental retardation alone is not disabling.  But, in combination, these things were disabling.

But in the telling of her story, she would have left out the detail about the cognitive impairment.Old School Myths  In fact, she would do everything in her power not to reveal that to people – naturally.  She told me, “I keep my head down.”

The Chana Joffe-Walt’s of the world, and presumably her listeners, would hear that this woman was disabled merely because of an injured hand, and would think the injury did not warrant disability benefits.  And they would be right.

And without any further inquiry into whether that was the whole story  … the myth … would persist.

 

 

9 thoughts on “The Shame of Disability

  1. robertbrinkerhoff2013

    I have to agree that being on disability will make you feel ashamed and stigmatized. I lie and tell people I’m a computer programmer or retired from military since I was active duty for 14 years just to hide the fact that I’m on disability. So many times people ask me if I’m employed and if I tell them I’m on disability they look at me like I’m a loser. I found easier just to lie to people and tell them something else. Retired is another word i use instead of disability. Everyone always ask. I found no problems with lying because in reality I have no income from this and no one has ever question me for doing it. My advice is never tell anyone your on disability including family and friends. They will judge you for it. I have aunts that talk behind my back with my mom. They said things like drawing a check or on disability in a negative tone, as if to say that I’m just a loser and good for nothing. Look how he has turned out. Being on disability is one step up from being a bum or welfare queen.. You will feel like one after being on it for awhile.

    Reply
    1. disabilitydunktank

      Thank you for relaying your experience being on disability. I completely understand your decision to keep the fact of your disability to yourself. There is so much rank misunderstanding of the truth of what it means to be disabled.

      Reply
  2. Anonymous

    As a claimant you forced me to confront the lies that I routinely tell people when they question as to why I am on disability. You’re absolutely correct in what you say, and how you describe it. I’ll tell them I’m on disability for seizures, but leave out the fact that anxiety, stress, and panic attacks from my mental health issues are actually the trigger for those seizures – it’s just so much less humiliating to have a severe medical issue when it isn’t, or can’t be linked to being crazy.

    Reply
    1. disabilitydunktank Post author

      Thank you, Anonymous. I completely understand the “p.r.” bind claimants/recipients of disability are in. It’s like I said … the process leaves little room for saving face.

      And it is incredibly difficult to be so thoroughly misunderstood and mischaracterized in the press. I have no idea if I can do anything at all to remedy it, but I have decided to get off the sidelines and try.

      Thank you so much for your criticism and for walking this really difficult and noble walk. NO apologies necessary.

      Reply
  3. AnonALJ

    As a former claimant’s rep and current SSA ALJ, I find your description of the claimant’s existence (and plight) while waiting for their hearing, then decision spot on. Keep up the good work!

    Reply
  4. John

    I am the parent of a child with a rare genetic syndrome that results in moderate to severe intellectual impairment (i.e., IQs below 60) along with a host of physical, muscular and skeletal issues. For 18-20 years, parents, schools and society work to overcome these deficits, to find the strengths and maximize them and to improve the weaknesses that can be improved. You look for and have a mind set of finding victory amid a sea of litle to no improvement. You focus on what can be done, not what can’t be done.

    Until you file for SSI or SSDI for that child. At which point those 18-20 years of looking for the positive will likely cause you to get denied because you don’t recognize that SSA doesn’t care that your kid can do simple office work but that such proud parental recitations of accomplishments, without corresponding documnentation of their deficiencies, will make it sound like the kid isn’t that disabled. Parents find it difficult that they are not to build up the child, but instead tear them down. That focusing on the activities of daily living that they can do without including and stressing the number of things that they cannot do isn’t doing their child any favors. SSA needs facts about what they cannot do, and sometimes parents, like the adults spoken about in this post, want to save face (for them or their child or both) or make things look the best they can.

    Many parents have told me that they felt like they have deserted their child by filing for benefits; the emotional impact on moms who address their child’s issues like someone describing a used car that has issues rather than their loved son or daughter whose life, to them, is more than these deficits. Who so badly need to speak about what their child can do because they are moms and dads and that’s what they are suppossed to do. Not dehumanize their child in order to get assistance.

    The need for people to not be seen as mentally ill, to keep some semblance of privacy about embarrassing items related to their disability, of parents who know that their child will need adult supervision every day of their lives but dream of them being more like their typical children and so frame things in that perspective.

    There is a lot of truth in the fact that the real facts of a disability may not be disclosed when asked by a stranger.

    Thanks for putting this out there.

    Reply
    1. disabilitydunktank Post author

      In response to John:

      Yes. This has been my experience as well. And this speaks to the difficulty of proving a disability case.

      Parents, caregivers, social workers, teachers, and the disabled person him or herself understandably want to focus on the positive, and build successes on whatever positives there are. That is right and proper.

      In the context of a disability claim, however, the focus is on – the disability … on what the disabled person cannot do, and why he or she needs help. The taxpaying public is willing to help, but only if a person absolutely needs it, and so Social Security Administrative Law Judges must focus on the negatives. And, that is right and proper as well. That is the important work that Administrative Law Judges do.

      It is a very jarring feeling for parents and disabled people who are properly bent toward a focus on the positives to have to all of a sudden pivot toward revealing all of the actual negatives. It feels like a betrayal, like an abandonment … a loss of hope … a loss.

      Expressing those negatives is very, very difficult for people – this is why the process is so soul-depleting, and humiliating for claimants.

      Reply
  5. really?

    hypertension and diabetes … I would be willing to bet that I could find at least 20 cases that I have come into contact within the past year where these were the only impairments (with the possibility of obesity added). With the “GRID” rules, it’s remarkably easy for a judge to find people disabled with only minimal impairments once they reach 50.

    Reply
    1. disabilitydunktank Post author

      In response to “really?”

      Yes, really. I would not have taken a case of a person (no matter the age – even over 50) whose only problems were hypertension and diabetes. And I wouldn’t have done so, because it would have been futile. They would have lost. There would not have been medical evidence to prove sufficient functional deficits from those problems that would prevent working.

      A person with hypertension and diabetes might be able to show they can’t walk, lift, carry – those types of physical problems, but they would not be able to show they can’t think, concentrate, etc. So, there would be no medical reasons why they would not be able to do a non-physically taxing mental job, especially a simple one, like being a telemarketer.

      Moreover, both of those ailments are almost always controllable – through medication and diet. When they’re not controlled, it’s often because of non-compliance, and non-compliance is a reason to turn a potential claimant down.

      You bring up the “GRIDS,” but for the GRIDS to apply (over the age of 50) factors other than physical limitations must come into play. For example, educational level, transferrable skills, etc. So, again, I would argue for the GRIDS to warrant a favorable decision, other factors than the functional deficits stemming merely from the hypertension and diabetes would have to have come into play.

      I’m not sure in what context you have come into contact within the past year where those are the only impairments. Again, this is what recipients of disability will often say, but it is not what is true.

      Reply

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