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.]