A word about inequity:
— According to the 2023 Getting Paid in America Survey, 78% of Americans are living paycheck to paycheck and shared that they would struggle to meet their financial obligations and indebtedness if their paychecks were delayed by one week. [1]
— More than one-third of Americans say that they can not afford to cover a $400 emergency, according to the Federal Reserve’s Economic Well-Being of U.S. Households in 2022 report. In the same report, two-thirds of renters share that they rent because they cannot afford a downpayment on a house, and 17% reported that they had been behind on rent payments at some point during that year. [2]
— Adults who receive disability benefits through SSI (Supplemental Security Income) are permitted to have a maximum of $2,000 in assets. This is not limited to financial savings that a person might have in a bank account. This refers to assets of any kind.
— Meanwhile, disabled adults who receive SSDI (Social Security Disability Insurance) have caps on how much they can earn on top of their benefits. In my state of Michigan, the average SSDI benefit is only $1,384.77 per month. Though people can work to earn more on top of this, the absolute maximum is $2,460 a month before losing benefits. Of course, some people with disabilities do not have the ability or stamina to work part-time, and those who can often face discriminatory barriers to finding employment.
The majority of Americans have economic struggles, and our policies require people with disabilities to live within or at risk of poverty. Most people cannot afford an emergency of any kind, especially an expensive medical emergency.
One example:
When you consider these statistics together, it is not surprising that in my work at the Epilepsy Foundation of Michigan, we frequently receive calls from people who have had at least one seizure recently (often, this includes people who have gone many years without a seizure, only to have an unexpected breakthrough seizure) who now find themselves in a serious bind. Most of these people are employed, but suddenly, they have a driving restriction. In Michigan, a person must be seizure-free for at least 6 months to drive legally.
If these individuals live in an area without robust public transportation options (most counties in Michigan), how are they going to get to their place of employment daily? With most living paycheck to paycheck, they cannot afford to lose that job. In an transient era when many people live far away from their family members, they may not have family members or friends who can drive them daily. Certainly, they can’t afford to take Uber and Lyft every day.
Are they then to apply for SSDI benefits?
Unfortunately, that is not a possibility for most people with epilepsy who have previously been well enough to work. They don’t have seizures frequently enough to qualify for those benefits.
And so we see that even a single seizure can create serious economic downturn if people cannot find transportation resources to get to work. With most unable to afford a $400 emergency and most unable to delay a paycheck by even one week, they cannot afford to lose that job. In the social model of disability, we consider that a medical diagnosis does not always functionally disable a person, but rather, social barriers, systemic failings, and a lack of access. In this case, a lack of transportation options are potentially upending a person’s ability to work and earn money to care for themselves and others.
There is a great deal of collective work to do here. It can feel disheartening. But if most — 78% at least — are struggling financially, or are close to it should one thing disrupt their lives, imagine what would be possible if this vast majority organized in better directions and held those in power to accountability for real, viable solutions?
—Renee Roederer
[1] 38,600 people were surveyed through the 2023 Getting Paid in America Survey. I found information about this survey at Investopedia: Most Americans Living Paycheck to Paycheck This Year.
[2] I found this information within the Economic Well-Being of U.S. Households in 2022 Fact Sheet.
Smuggling Grace 