Having a disability is nothing to be ashamed of.
Being poor is nothing to be ashamed of.
Getting help from our own government is nothing to be ashamed of.
And yet, I’m sure you winced a little, internally, at one or more of these statements.
Our society here in the US has put a lot of shame and stigma on both being poor and being disabled.
Both of these have, at times, been used to dehumanize us, or to leave those of us who match either identity to pity or victimhood, rather than to recognize us for what we are: people struggling with an additional sometimes burdensome label.
Next week’s post will focus on the practical aspect – what you can do or say to help yourself get through the process with minimal emotional damage – while this week I’m focusing on explaining the challenge itself.
Ableism in society
I’ve talked about this before and I’m sure it will come up again. But we live in an ableist society. We struggle for inclusion on a lot of levels, from fighting for basic access to buildings, public transportation, and society in general, to fighting stigma, pity, or toxic positivity.
Each type of condition has its own challenges, both internal and external, but all of us with disabling conditions have some aspect of our identities objectified in a negative way or have experienced having our needs ignored or ridiculed.
These issues become even more apparent when looking at employment rates for people with disabilities, and how people with disabilities have historically been treated.
Many of us have been devalued, institutionalized, or shamed simply for being who we are.
On top of the stresses that our conditions themselves may create, we also carry the burden of societal assumptions and expectations – the presumption that our lives are lower-value, our ability to contribute minimal or non-existent, and our needs far outweighing what we have to offer.
The stigma placed on poverty
The culture in the US places a huge value on employment and work. Think about conversations you’ve had – how often has somebody used ‘what do you do for a living’ as an opening question?
The implicit assumptions here are that 1) you are gainfully employed and 2) that employment is how you provide value to society.
Neither of these underlying asumptions are necessarily true. There not only is a lot of unpaid labor that women often manage, but traditional employment also has been undergoing radical shifts in definition.
Our society has devalued many significant activities due to sexism(focused childrearing, eldercare, and household maintenance all have been predominantly managed by women, and generally do not engender much, if any, respect), racism(many jobs that were initially performed by black people were given a lower financial value, deprived of governmental supports, or generally stigmatized by society), or ableism(people tend to be uncomfortable with ‘difference’ so many qualified disabled people who may be capable of doing the work either don’t learn of appropriate positions, face an upward battle just to participate in the application process, or run the risk of being rejected because of the implicit bias those in decision-making positions may have against them).
With this work-focused culture, too often being poor is viewed as a moral failing, rather than just an unfortunate situation. Too often, it’s assumed that if the poor individual just worked harder or tried more, or wasn’t so lazy, then they wouldn’t be poor any longer.
Poverty isn’t actually a moral failing. It’s something that happens to people due to any variety of challenges in life, and is unavoidable when there are so many jobs that don’t pay a living wage.
Racist practices, such as redlining, have made it even harder for poor blacks to escape poverty.
Even the wording I’m using here show how much negativity being poor has been steeped in. We ‘escape’ poverty as if it’s a being that threatens us.
The reality is that 40% of Americans are one missed paycheck away from financial disaster. That study predates COVID-19, so I suspect that the number of poor people in the US is going up dramatically at this point.
The shame and stigma of applying for social welfare support
Applying for the survival-associated programs often takes on a shameful tone – ‘living off the teat of our great country’ and other negative images.
These programs are only an option if you are disabled and/or poor. And for these programs ‘disabled’ is specifically defined by both medically recognized limitations and the inability to earn a defined level of income(Substantial Gainful Activity, or SGA).
If your household’s sole or primary source of income is Social Security Disability Insurance(SSDI) or Supplemental Security Income(SSI) you will, by definition, be poor or low-income because these programs provide only a limited income.
Many people see applying for SSDI or SSI as a form of failure already. It’s an acknowledgment of your own inability to maintain anything resembling a full-time job, which is painful.
Carrying through on the application is basically taking step after step to prove that you aren’t capable of working regular hours, convincing those reading the application of your own inadequacy as a human being – with medical notes and statements from your medical care providers to back up your claim – because the concern that you are trying to cheat the system is much higher than empathy for your challenges
If you need to see one of their doctors to be evaluated, the doctor may be focused on disproving your disability(and the limitations that go with it) than on how you are actually doing or how impacted your life is by your condition. There likely are some doctors that are exceptions to this, but they are the exceptions.
The assumption these programs seem to be working from is ‘lying until proven otherwise’ rather than the ‘innocent until proven guilty’ that our country states as an ideal.
Most of the government employees responsible for managing these programs are burocrats – and those who care quickly become overwhelmed and burned out.
Since they are people too they often carry with them the same stigma and disapproval of poverty(and/or discomfort with disability) that much of the population has, meaning that the people they are being paid to help often immediately rub them the wrong way simply because they are poor. This doesn’t lead to the best possible treatment.
Many people applying feel humiliated or worthless, and the people processing their claims may reaffirm those feelings. Also, like most government forms, these applications need to be filled out precisely and the forms are created utilizing certain assumptions, so anything that falls outside of the norms becomes difficult to justify or prove.
As an example, the last time Al and I applied for SNAP benefits, we made the mistake of sharing information about a contract-based job he’d held that only paid if they had available work.
They hadn’t had anything to offer in months, so he hadn’t worked.
The people at SNAP couldn’t seem to wrap their minds around it and kept demanding to know his hours and see a paystub while rejecting the most recent payment information he had(which was a few months old at the time).
Every call to the office, we talked to a different staff member and received a different definitive statement of how to correct the problem. Each time we sent something in, it was rejected as the incorrect solution.
This isn’t an isolated problem. It has occurred for many people in different forms, and it is extremely exhausting.
The social cost of the stigma on social welfare
Many people on social assistance programs don’t want others to know. It goes back to that stigma on being poor. If you’re poor enough to get SNAP benefits or if you are living on SSI income, then explaining that is acknowledging your position of relative poverty.
There’s also a big fear of being rejected by whoever you were talking to. That combination of shame and fear means that many folks on these programs have a hard time openly communicating with new people.
Inevitably this other person may ask ‘what do you do for a living’ or other painful questions, and the fear of rejection looms large.
In order to move forward in life, people in poverty need to find good work – and that fear and decreased interaction can often cost in terms of job opportunites, loss of a support network, and other more subtle ways.
Those of us living with disabilites often have the poverty stigma on top of the stigma of being disabled.
These fears are hard to get through – and are often reinforced during the application process for these aids that we’re often embarassed to need.
The thing most damaged in all of this is our self-efficacy. Self-efficacy is that belief in our own ability to successfully do things.
I remember when I first applied for SSDI, I had periods of feeling like a failure.
Even though I applied after successfully completing a demanding college courseload and spending close to a year on a self-financed trip to Australia, I still felt pretty worthless for a while.
I lost several jobs due to my FND symptoms before applying, and with those employment losses being followed by my father’s sudden death, I just knew that I wasn’t capable of trying again in that moment.
I did everything I could to maintain self-esteem, but I still fell into a deep depression and it took a lot of work to get myself back on course.
Once I decided on my career change and started studying, I slowly regained some confidence, but I remenber being very shy and quiet at most of the jobs I was able to get – fearful of failure and fearful of making mistakes, afraid that either my symptoms or my own existance would suddenly leave me incapable of completing my responsibilities.
How I have pushed back against these challenges
Over the years, I’ve taught myself not to be embarrassed. I’ve learned to recognize the challenges that these systems cause, and I’ve learned to push back on others’ expectations – but it took a lot to get there. I also have always been an outgoing person, an extrovert, and a person who is much more likely to overshare than leave things out.
I now intentionally share that I’m living on SSDI. I intentionally talk about my FND symptoms and how they impact me.
I try to talk about these difficult subjects like poverty and racism and ableism because I’m not afraid anymore.
I’ve met enough people who accept me for who I am that I’m willing and able to take these risks with strangers.
I only do so in settings where I feel I am not at risk of an extreme reaction. At times I’m feeling strong enough. In ways that don’t put me at risk.
I still find myself preparing for these reveals by talking about what I am doing – I’m running a blog, I’m building a business, I’m spreading awareness of FND.
I start with that – and then the conversation shifts and we end up discussing discrimination or how broken the social welfare system is, or the devaluing of the labor of women.
I share my lived experience of being disabled, of being on SSDI, or applying for SNAP or LIHEAP or whatever.
Sometimes people thank me for giving them insight, sometimes people ask me for advice, sometimes the subject gets dropped.
But it’s taken me a long time to get there, and I still am putting a lot of energy into how I’m not a ‘drain’ on society, rather than simply focusing on my humanity making me worthwhile, worth respecting worth protecting.
We all deserve to be treated with respect, and we all deserve to get the supports we need. We all should be respected simply due to our humanity. But we’ve all absorbed the societal story of poverty being proof of moral failings, and disability making us a burden.
We’re starting from that assumption too often, and fighting for us mattering to be recognized from the presumption that we don’t.
I celebrate each step forward in this understanding, and do my best not to take any steps backwards.
If you want to do something to help fight the stigma specifically placed on poor people, I recommend checking out The Poor People’s Campaign – I’m participating in it myself, as I recognize that fighting poverty will be extremely helpful for the disabled community.