I was raised with the example of a hard-working, blue-collar father, and I went into the trades at 21. As I welded my way up the West Coast, young daughter in tow, I adopted this perspective that over-working oneself to death was an admirable way to go. My self-worth felt determined by how much I was contributing and participating. This applied to both my then-career in commercial iron and my anticipated career as a writer.

I never imagined the former would be cut so brutally short. I sustained a life-altering injury at age 32, when I was the passenger in a car accident. My C4 vertebra was crushed, and I’m now paralyzed from the chest down.

Enter Shame

Trading my hard hat and steel toes for a bulky power wheelchair was a blow I’m still reeling from six years later. Trading my overtime ironworker paychecks for a disability check further assaulted my pride.

Grasping for a shred of dignity, I was determined to make sure people knew I was still a valuable contributor to society. My ego insisted on convincing others of this. I cringed to imagine anyone might assume I spent my time idle, a burden.

I also hated the way my disabled body looked and the space my wheelchair took up, and oh, if it malfunctioned in public, I felt I could just die.

Why did I feel this shame regarding my disability?

My pride was so wounded. I’d really internalized the idea that my worth had diminished; I felt like I was a burden now, unworthy of love, belonging, joy or nurture.

When I’m treated like a burden, my shame is particularly intense. I’m embarrassed that I’m seen as unlovable. Inside I seethe with self-hatred and desperately grab for dignity by hiding behind an entitled attitude to avoid a torrent of tears I can’t wipe away.

My shame tells me I am less of a person because I need help — that, like a baby, I just occupy space and the time of others.

The damage to my self-efficacy is also staggering — self-efficacy to dress myself and put a spoon to my mouth and financially support myself.

Illustrations by Erin Barker

We Are More Important Than a Job

Those of us living with disabilities often have the poverty stigma on top of the stigma of being disabled. Performing skilled labor for a paycheck didn’t make me any more worthy than I am now of the space I occupy, but society’s attitude doesn’t reflect that.

Society assumes that I can’t “do my part” and resents me because they assume I need taxpayer help. That’s not necessarily even true. Many people with disabilities choose to work even though it’s difficult because Social Security pays so little. They put their health and lives in danger pushing their bodies to the limit.

Others would seek work but need basic care needs met first. Our care would be a worthy investment for the government to make. It would create jobs for caregivers too. But giving assistance to people with disabilities is seen as a waste of resources on someone who allegedly can’t perform productive labor in return. I am supposed to sell my labor in order to earn my bread; that’s how it works.

Our society’s industrial mentality facilitates the perspective of disability as a shameful thing.

When meeting for the first time, people often ask each other what they do because of this ever implicit assumption that employment is how we provide value to society. People don’t ask what I do anymore. I’m disabled, so they assume I’m probably not gainfully employed or making a contribution anymore.

It’s insulting, but at the same time it’s also ignorant to assume our career contributions are what give us worth anyway. Our value as human beings shouldn’t be tied to our net worth or our capacity to work.

My pride makes me push back against the presumption that my life is of lower value, my ability to contribute is minimal or nonexistent, or my needs far outweigh what I have to offer.

I want to be accepted as I am, but I’m not concerned with being palatable or pitied or being a feel-good-story. I don’t want you to look at my wheelchair, but not because I’m ashamed of how I get around, but because it doesn’t have much to do with who I am at all. Ask me what I do. My disability isn’t my occupation or my job. I’m just as proud of my work as a writer as I was of my work as a welder. In fact, my contributions feel more significant now.

Granted, there’s meager money starting out in freelance, and I’ve needed Social Security to survive. Accepting SSDI can feel defeating, an acknowledgment of your inability to maintain a job.

I used to keep my SSDI recipient status a secret and now, when I share it, it’s usually while discussing marginalized demographics or how broken the social welfare system is. I don’t mind being an example.

Still, I find myself quickly listing my current contributions, regardless of the reality that my humanity alone makes me worthwhile and worth protecting. How deeply ingrained is the bootstrap rhetoric that we are ashamed when we can’t pull ourselves up.

Poverty happens to people due to any variety of challenges in life and is often unavoidable in this economy. Getting help from the government is nothing to be ashamed of. Being disabled is nothing to be ashamed of. The shame should belong to those unwilling although capable of alleviating the financial burden of people with disabilities who are struggling.

In between fighting stigma, pity, toxic positivity and ableism, we don’t have time to fight shame too. I’m over it.

I work because it gives me purpose and something to be proud of. As a quadriplegic, I know how life-altering a spinal cord injury is. It strikes at the core of your identity because a lot of who you are, how you see yourself and how you describe yourself to others is by saying what you do — and when you can no longer do the things you used to do, who are you?

What you do for work says a lot about you. It’s a way for people to get to know you but can also be a way for society to fit you into a box. What do you think when someone says they’re a doctor, elementary school teacher or social media influencer? People have stereotypes in their mind of the people that have those jobs.

Unfortunately, people also have prejudices about “the unemployed” and “the disabled.” Society has codified these stigmas into law, and instituted policies that trap people with disabilities in poverty and discourage work. Even just to qualify for SSDI, people who have become disabled spend so long convincing the government they can’t work that these stigmas often get internalized — they don’t see that it’s possible to work, only the insurmountable barriers.

I was a senior in college, months away from a career in finance, when a C5-6 spinal cord injury left me incapable of doing many of the things I identified with. Yet, I returned to school still holding on to the belief that my mind was intact and, even though I could no longer play violin, breakdance or ski, I could still pursue the career and dreams that I had.

This motivation kept me going for so long, until I was face to face with rejection and discrimination. Employers looked at me and saw a minority “in” a wheelchair, who couldn’t hold a pen or shake a hand. Lumbering into an interview with a motorized wheelchair and needing assistance with the door didn’t help. Employment discrimination is not something new — women, people of color, religious minorities and the LGBTQ+ community are still fighting against discrimination in hiring.

While most employers are smart enough to not blatantly discriminate against people with disabilities because of the ADA, it still happens. And once in a while I’ve heard someone let slip what they really think — that I can’t possibly work. I even heard this from a doctor, someone who I thought would be more understanding and encouraging.

So I sought out people and organizations that could see my potential. I volunteered at nonprofits and did freelance work to gain experience and applied to hundreds of jobs in a variety of industries. Getting a job was a struggle, but it was worth it: better health insurance, identity, purpose, socialization, improved physical and mental health and, of course, an income. Now, my work gives me a reason to start the day early and a feeling of excitement to see what challenges the day may bring. I can’t wait for tomorrow.

You have to work twice as hard to get half as much.

This is a common mantra told to Black children. However, being disabled I was always told that I needed to work three times as hard. Throughout my life I have always been that individual that was a hard worker but didn’t see much success financially.

Growing up I always knew that I was Black, but I also always knew that I was Disabled. Inaccessible playgrounds, inability to go to other people’s houses and always having everything centered around physical therapists doing painful therapy and going to see doctors, I was always reminded that I didn’t fit in. I never really saw positive images of disabled people and never knew that there was anything outside of constantly being told, either implicitly or explicitly, that I was a problem.

My parents tried to instill a sense of pride in me, especially as a young Black girl, but I always felt this sense of shame and disconnect from my own body. It wasn’t until I saw my first Picasso and Frida Kahlo paintings that I began to think that there could be something more to just whatever this was.

I was in my 20s when I was gifted a trip to Costa Rica along with other disabled individuals. At the peak of Mount Poás I looked into the bubbling magma, and I realized that I too could be something more, and that holding on to all of that hurt and anger meant nothing. I had done something that nobody in my family had done and that none of my friends could ever say they had done. This was an accomplishment, and not just about who I was as a disabled individual. I was fully seeing myself for the first time.

Now that I am an adult working in the field of equity, I understand that ableism is deeply rooted in this country. I’m also of the tradition that knowing history matters. You cannot dismantle what you do not fully understand. So let me be brief:

The major requirement for the enslaved to be freed was proof of value of the labor that they gave to slaveholders, not their inherent humanity but what they could produce. So therefore, if you were disabled you had no value and could not get free unless you escaped with family or friends. Recently, Juneteenth has become widely popular, especially with being ratified as a national holiday. However, many do not know the fact that disabled children and young adults were signed away back to slaveholders and lived in bondage until they died. So, these ideas of who is seen as valuable, whose labor is seen as important and that “working hard” leads to freedom can be myths. Fun fact: enslaved folk worked extremely hard and yet their hard work did not translate into financial freedom.

Enslaved women and femmes were often those who took care of white children and cleaned the houses; after slavery ended this labor was still outsourced by white households who could afford to do so — a practice that is still done to this day. The idea of women taking on household chores and them being relegated as “simple women’s work” is a vestige of patriarchy. Whole campaigns such as home economics classes were really patriarchal indoctrination to keep white women from economic freedom. So focusing on whose labor is valued, of course we see the continuance of underpaid home health aides and other care workers whose work is often deemed as “unskilled.”

A longstanding question remains unanswered: What is the worth of a human being?
During COVID we have to radically shift our thoughts on labor and care, but do we have the collective willingness to do so?

Even now I’m doing the emotional labor of internalized ableism; it’s still a very difficult process. I still have self-doubt. I have literally worked myself into sickness, and now as an entrepreneur I am redefining what my worth is. One of the principles of disability justice teaches us to recognize the wholeness of individuals. We are more than just a job or some sort of cog in a giant wheel; we are human beings. And the work of equity is to get back to what is human about us. And to create a society that acknowledges, honors and supports the humanity of everybody.