Advocacy in Flawed Systems: Using Shackling Language to Help a PWD?

In my professional life, I’m an advocate at a non-profit agency that provides free legal services to low-income folks. I work primarily in the area of public benefits, which means I’ve done a lot of work with the program from the Social Security Administration (SSA) to assist low-income folks with permanent disabilities: Supplemental Security Income (SSI).  When I read Lauredhel’s post about the language of shackling and the problem with terms like “wheelchair bound,” it reminded me of the type of problem advocates and people with disabilities encounter in navigating the SSI application process.

Some quick background on SSI — it’s a program from the Social Security Administration, but does not require past work history or employment where the individual was paying into the Social Security system. Those programs that do depend on past work history and contributions to Social Security are termed insurance programs, where a person who becomes disabled or turns 65 can collect disability or retirement insurance based on past contributions (premiums) paid to SSA. Those insurance programs are available to anyone who has paid in, regardless of income or resources — Donald Trump and Bill Gates will both collect retirement insurance starting at age 65.

SSI, on the other hand, is considered a “welfare” program, because it is based on the income and resources of the applicant and doesn’t depend on past contributions to SSA. A person has to be very low-income in order to qualify for SSI and there are strict limits on the resources a person can have, including property, bank accounts, or other assets. If a person qualifies for SSI, they receive a maximum Federal grant of $674 a month. Some states supplement that grant – in California, the maximum SSI grant is $850 a month.

Advocacy usually comes into play in determining whether or not an individual claimant is sufficiently disabled to qualify for SSI benefits. In order to qualify, an individual must have a physical or mental impairment that prevents them from engaging in substantial employment for a period of 12 months or more. When an individual applies, they turn in medical records, forms and statements from their doctors, and forms about their work activities and daily activities and general impairments. SSA then considers and often decides that the applicant is not disabled, requiring the person to go to an administrative hearing with an Administrative Law Judge (ALJ) to determine whether or not the person is disabled.

I represent people in this process and at these hearings, where my client’s goal is to convince the ALJ that they have a disability that prevents them from working and therefore should get SSI benefits. For many of my clients, SSI money is their only possibility for ongoing income that would allow them to keep their apartments, buy food, pay for medications, and otherwise survive. This means that convincing the ALJ that they are sufficiently disabled is of paramount importance to the clients.

And here’s where the dilemma arises. When evaluating clients, ALJs are not interested in nuance. They want to see a claimant whose disability limits or impairs their functioning so significantly that its a foregone conclusion that person will never be employed again. Any functional abilities a claimant has – regularly visiting with friends from church, doing their own grocery shopping or food preparation, ability to use public transportation – makes it more likely that the claimant will be found not disabled, so all of those abilities have to be excluded from the discussion or explained away as insignificant abilities. An ideal claimant would be someone in a coma.

This means that when I am advocating for an individual client, I need to ignore any and all functional abilities the person has while highlighting and emphasizing each and every functional limitation. I also need to show that this person is so affected by their disability that they are totally incapable of working. And it is when I am framing these arguments and drafting these briefs that I feel very uncomfortable. I find myself writing paragraphs like this:

Ms. R  is a 56 year old female who suffers from significant and severe physical and mental disabilities, including depression, anxiety, chronic back pain and headaches, and diabetes. She has lost interest in all activities, is so forgetful that she cannot leave the house for fear she will not be able to find her way back, and feels so useless and such a burden to her family that she thinks constantly of death and dying.

All of those things were true about Ms. R. But she also told great stories about how she used to hike in the Sierra Nevada Mountains and taught us how to make Cuban coffee and was an amazing singer. She was a great mother to her adult son, who loved her beyond measure and looked at her with adoration while she told us stories. But none of those characteristics were relevant to the SSI determination and if they’d been included in the brief, the ALJ would have been less likely to approve her application.

So when I’m writing a brief, I find myself playing to those stereotypes of restriction and limitation in order to fit into the ALJs pre-conceptions of what a person with a disability looks and acts like. I have no doubt I’ve used the term “confined to a wheelchair” in a brief. I wouldn’t be surprised if I’d described a claimant as “totally dependent on outside assistance for even basic functioning.” And I’m horribly conflicted every time – I’m advancing my client’s immediate goal of obtaining benefits that will allow them to stay housed and fed, but I’m perpetuating a negative stereotype of people with disabilities and reinforcing the flawed perspectives of the ALJs.

Because my ethical obligation to my client requires me to zealously pursue their goals of obtaining benefits, I’ll swallow my concerns and write a brief that makes them look as pathetic and incapable and needy as I possibly can. But this tension between serving the needs of individual clients while reinforcing a larger system of thinking about people with disabilities this way is a difficult one.

[Note: like the rest of my policy posts, this is entirely US-centric. This description of SSI regulations and requirements is not intended to be a guide for applicants, just a broad overview for purposes of this discussion. Do not rely on this information in seeking benefits.]

9 thoughts on “Advocacy in Flawed Systems: Using Shackling Language to Help a PWD?

  1. I don’t have any answers, just want to say you’ve done an excellent job of defining the problem. And it’s not just SSI, the “welfare” component. When I claimed SSDI, the “insurance” component, I was advised to describe my functioning on my worst day. I still feel conflicted about “over dramatizing” my impairments 15 years later.

    The Social Security Administration’s policies are the inevitable outcome of a disabling system, where disability is a binary, not a spectrum. Either we’re total wrecks or we should be able to pull ourselves up by our bootstraps.

    Are there any governmental support systems which permit us to work part-time, and also receive some benefits?
    .-= Jesse the K´s last blog ..PSA: Don’t Tug the Magsafe from your Macbook =-.

  2. ‘But this tension between serving the needs of individual clients while reinforcing a larger system of thinking about people with disabilities this way is a difficult one.’

    Yep. I find, just in filling out forms about myself, I can be writing something entirely accurate and feel really bad about myself. Thanks for this.
    .-= Chally´s last blog ..Peeling the sticky tape away from sex ed =-.

  3. thanks for the clarification, jesse – the process of proving disability is identical for the SSI (welfare) and SSDI (insurance) components, so this issue arises in both areas.

    i definitely agree that the problem is based on the definition of disability as a binary and as totally based on ability to work at the exclusion of any other areas of functioning. it’s also based on leaving decisions to judges who import a whole host of ableist assumptions with them, making them an intrinsic part of the decision-making. having someone’s financial survival dependent on an opinion of what people with disabilities can do based on stereotypes of course leads to outcomes that don’t make sense. i blame it partly on tradition – the regulations and definitions were created decades ago, based on their conceptions and models of disability at the time – and partly on morals and the concept of the ‘deserving poor’ that demands that anyone getting government assistance must either be totally functionless or a child. it’s a shame that this effort to ensure that “fakers” don’t scam the system and get benefits ends up depriving people of the benefits they need to live.

    there are some provisions in both SSI and SSDI that allow for minimal work without losing benefit eligibility. they give a “trial period” so a person can attempt work without losing benefits, so if they can’t maintain it past a few months, they don’t have to reapply all over again. there are very very complicated requirements, though, and the programs are clearly based on the binary assumption that a person is either disabled, can’t work/earn enough to live on, and thus deserves benefits, or is not disabled, can work fine, and thus does not deserve benefits. i have seen some people be able to make good use of them, though. there’s more info on these work incentives at the SSA site.

  4. I’m going through this right now with mental illness. It kind of makes me feel like shit to fill out all kinds of forms in which I must write down all my “bad” qualities.

    I may not be able to remember to eat some days, but I also knit beautifully.
    .-= thetroubleis´s last blog ..What It Is To Be A Monster =-.

  5. Yep. I spent a year applying for disability and other assistance programs and it was like a full-time job of new forms arriving in the mail weekly for me to fill out. And I had to represent myself in the worst possible ways, while working in other areas of my life to think about myself in positive ways.

    My therapist at the time told me that many people working on applying for disability ended up depressed because it does have such an impact on your mind to have to constantly focus on the negative. Having been through it with clients before, she knew I had to keep focusing on the negative in those forms, but she worked with me on focusing on the positive when not working on the forms. Talk about some cognitive dissonance.

    Even now, I get reviews sent to me every few years and I have to adjust my thinking from trying to think positively and say things like “well, I can do this” and “my meds have helped me to do that better” and just go for the negative gusto – describe the worst days, the worst symptoms, the things I can’t do even on my best days, all of the reasons I am incapable of working, etc. I have to basically catastrophize my own life in order to continue to be eligible for the things that help me to live it. It’s a strange strange thing. And while reading my doctor’s reports on how disabled I am can feel bad, I’m grateful that he knows all the right words to put in those reports to make sure I continue getting the assistance I need.

    So my message to you is – keep doing what you’re doing. Because that is what your clients need. It’s unfortunate that the system works that way, but as long as it does, it needs advocates like you to know how to go for all of the most tragic descriptions possible – and then be able to sit down and talk and laugh with the person as a real PERSON afterward, too.

  6. yes, yes, yes! thank you for this post. one thing to mention about california – they make up for the extra money by making you ineligible for food stamps, and possibly other programs for low-income people. my money situation stayed about the same after i moved from california, with the food assistance and lower rent here helping make up the difference.

    it is so dehumanizing to fill out the forms when you apply. and if you don’t catastrophize your life, they seem to invariably deny you benefits. i run a support group for people with one of my disabilities, and one of the women in the group right now is stuck in the extremely unfair position of trying to simultaneously prove that she isn’t able to work for disability, and prove that she is a capable parent in a custody battle with her emotionally abusive ex. and the disability people are perfectly capable of using the court case as evidence that she is lazy and lying. she is terrified the court situation will get hold of information about her hospitalizations, because of course it’s worse to be mentally ill than to be abusive. and the money she is spending on the court case makes it harder for her to provide for her child, when she is unable to work and receiving no assistance.

    the lazy argument boggles my mind, because it is such an exhausting process to get disability. another member of my group got denied twice, and i think part of the reason was that she had such trouble filling out the paperwork. as rosemary mentioned, definitely a full-time job.

    i never thought i’d thank my lucky stars for involuntary hospitalizations, which were a special kind of hell, but i have every reason to believe that they were why i was approved.
    .-= myriad´s last blog ..not much. =-.

  7. The UK has very similar rules which recently changed. The result seems to be that even more people are chasing fewer jobs, with people with disabilities among the most unlikely to be offered a job.

    I shouldn’t talk about this, it makes me so angry in a very short time. And I work, I hate to think the effect it has on someone who can’t work due to their disability.

  8. This is of particular interest to me because my SO’s mother is a judge in these cases. She’s the most empathetic, kind woman I’ve ever met and the things she tells me about her cases are just heart breaking (in what she can legally discuss). The problem with so many of these cases, especially in our rural area, is that by the time people are getting into the court room (which can take from months to YEARS) they are so physically and mentally run down they can’t work, and that its often impossible for her to authorize work in order for the people at her hearings to get the benefits they need.

    [portion redacted for violation of comments policy]

  9. Thank you for this post; I know you probably didn’t mean it this way, but as someone who’s reapplying for SS, this helps me figure out their POV and get myself into the right mindset.

    I should see if there are advocacy groups near me; I dread filling out those forms; it’s like willingly taking on another thing that makes it harder for me to get through the day.

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