My personal income puts me at the federal poverty level, even though I have a graduate degree and more than 30 years of both paid and unpaid work experience. Because I am disabled and no longer able to do most paid work, I receive about $1,000 through Social Security Disability Insurance [SSDI].
Our household income is higher, but I can’t help but wonder why my life is valued so low. Is it determined by some higher entity or karma? Is it a numerological message or is it just a confluence of being a woman, a disabled person and a queer person?
According to the 2016 National Survey of Drug Use and Health, an estimated 10.4 million adults age 18 and older in the United States had a serious mental illness, including 2.4 million adults living below the poverty line. In 2018, 9% of white women were living in poverty, compared to 20% of Black women and 29% of all women with disabilities, according to the National Women’s Law Center. A recent report from the Williams Institute found that one in five LGBTQ persons live in poverty.
For 2019, the federal poverty threshold for a one-person household was an annual income of $13,300, according to the U.S. Census Bureau.
The payment I receive due to my disability is about equal to the $1,000 education stipend I received in 1992 when I started graduate work at Louisiana State University. I was studying political science, focusing on American judicial politics and political philosophy.
At the time, I thought I was set; $1,000 seemed like a fortune to me. Steady reliable income to allow me to focus on my studies. Yes, please.
Growing up in blue-collar West Mifflin, we were among the poorest families on our block. My family's poverty was entwined with addictions and untreated mental health status. My dad worked hard and earned a decent living, but not enough of his earnings made it from the paycheck to our household bills to ensure we were comfortable or secure.
I had no idea what a stable financial life would be like. It was something I aspired to, of course, so a monthly stipend that I had earned for my academics seemed like a promising start.
For a grad student, I did OK. I had a car note, roommates and lots of communal meals. There was rarely much left at the end of the month, but I wasn't hungry. I supplemented my stipend with some babysitting gigs and a few other odd jobs. I had to be careful, but I managed.
I expected things would get better after I completed my education and moved out into the real world. Then I switched my professional focus from academia to social services.
I went to work for the Catholic Church, making just shy of $1,000 per month. My car was paid off, but things were a bit more challenging when I learned I had to pay things like water and sewage bills as well as rent. I returned to Pittsburgh in 1998 to pursue another graduate degree, this time in social work and without a fellowship. So I found work at a domestic violence shelter for $7.50 per hour. Then my internship hired me to work full-time while I was finishing my degree. My gross annual salary was $20,000.
Ten years after my college graduation, my monthly net income was exactly the same. I had work experience and an advanced degree, but my monthly income had not kept up with inflation. That $1,000 per month no longer felt like a windfall. I didn’t expect a career in social services would make me wealthy, but I did hope to be self-sufficient.
I changed jobs, and my income moved into the low $30,000s, but with exorbitant health coverage costs because of copays and deductibles. Then, I took a pay cut to move to a larger agency. I stayed for five years, with my pay inching into the mid-$30,000s.
Finally, I ascended into management at another agency and reached the $40,000 mark.
This was 2010. Eighteen years after my college graduation, I hit my salary peak, bringing in net pay of close to $2,100 per month, or around $25 per hour. I felt like I was making headway in spite of student loans and health insurance costs. I was working hard and living with a degree of frugality.
Then everything changed.
In 2010, my disability forced me to permanently stop working full-time. I utilized my short and long-term benefits, then was approved for SSDI.
After Medicare and student loan costs, I was bringing home a little under $1,000 per month in 2011. Fast forward to 2020, and I have a net monthly payment of $1,018 per month. Almost 30 years after those first regular paychecks vis a vis my graduate school stipend, I'm earning the same literal amount of money before adjusting for inflation. It is almost as if those intervening years didn’t happen, that my work and educational accomplishments, my volunteer time, and my other contributions to the community had no impact on my real worth.
After finishing this essay, I've learned that even that modest amount is threatened. The federal government just informed me that my benefits have been canceled, without offering an explanation. I have 60 days to appeal.
The monthly SSDI payments are calculated based on your earned wages during your working lifetime. Recipients who didn’t meet the work requirement perhaps because they worked part time or left the paid workforce are issued a Federal Benefit Rate, which is currently $783 for individuals and $1,175 for couples.
It is a classic case of how our value as neighbors, citizens and human beings is determined by our net worth, not our humanity.
I have a partner, and her income covers our perfectly good standard of living. We’re not struggling. But as an individual who has been working since I was 12 years old, often at multiple jobs, it feels demoralizing to not be contributing or pulling my weight financially.
From a young age, we learn that our value as human beings is tied to our net worth or at least our capacity to work. Society also teaches us that there are people who cannot work (the ‘deserving’ poor) and those who choose not to work (the ‘undeserving’ poor). The exception, of course, is for very rich people who inherit their wealth and are exempted from this moral distinction by virtue of their birth, regardless of their work histories.
We are taught to give charity to deserving poor folks rather than to leverage resources to benefit all people living in poverty, to sustain the status quo and to hope like hell we don’t end up in this position.
No one wants to feel like a burden, especially on their life partner. And that’s my struggle to reconcile — how do I pull my weight in our family and household with these constraints while taking good care of my health? And given my childhood experiences, there’s a nagging fear of what might happen if I was suddenly all on my own. How would I get by?
A household composed of two white women means we’d earn about three quarters the annual wage of a male partner or spouse, meaning we’re already learning less than a family comprised of a white male and female before factoring in the 50% decrease in income when I saw when I became disabled.This gap widens for Black women and other women of color.
Could I afford to live on my own in Pittsburgh? Assuming I could find a housing voucher and decent housing, maybe. As a trained social worker, I’m familiar with many subsistence programs such as SNAP (food stamps), food pantries, medical ‘indigent’ programs to supplement SSDI. That’s one way to leverage that master’s degree, I suppose. But it would be a full-time job to survive even in this allegedly affordable city.
I worked hard in the traditional paid workforce until my disability required me to stop. I still work hard as a blogger, activist and artist, but without pay since 2010. In 2019, my site was named Outstanding Blog by the national GLAAD Media Awards as well as voted Best Local Blog in Pittsburgh in the 2016 and 2019 City Paper reader polls. My site has also been added to the LGBTQ+ Studies Web Index of the Library of Congress. I’ve created public art projects, tackled social justice issues, and engaged in other activities that most people would say have value — without pay.
I was disabled at age 40, so I will have to live off $1,000 a month for the rest of my life with modest cost of living adjustments, so far an $18 increase over nine years. My capacity to perform side hustles or a very part-time job is limited by my health and the Social Security rules that restrict how much paying work recipients can do without compromising their full disability check.
Then there’s the indignities that come with SSDI. The assessment process and reauthorization procedures are exhausting. There’s a presumption that most of us are scammers or unwilling to work, with zero credit given for the unpaid labor we continue to complete. The relentless inefficiencies and implicit threat of losing benefits wears you down, year after year. It could get even worse as the Trump Administration is taking steps to revise social security disability insurance to require more reviews, more paperwork, more barriers. I can admit that I feel a nagging concern that even this essay could trigger a review and target me for more administrative scrutiny simply because I criticize the system. And I’m chastened to realize it took three times the energy and focus to complete this essay with support from editors because of my symptoms.
I am grateful that I was able to work hard for so many years, but I resent that my value to society comes from that work rather than from my humanity. I am not ashamed to be on SSDI although I am shamed by how poorly we value and treat people with disabilities. Along with that gratitude, I will likely always struggle with the emotional toll of being assigned a literal monetary value that’s the same as about 30 years ago.
Sue Kerr is founder of the blog Pittsburgh Lesbian Correspondents and the #AMPLIFY LGBTQ storytelling archive. The AMPLIFY archive and submission form can be found at http://www.pghlesbian.com/amplify. Kerr can be reached at firstname.lastname@example.org and on Twitter at @pghlesbian24.