In high school, I fought to be the best at every boot-camp exercise our ex-Navy coach put us through during soccer practice. One day I laid flat on my back for nearly 15 minutes lifting my feet six inches off the ground because the coach said whoever kept their feet up longest could get water.

I won. I got water. I couldn’t walk the next day.

I heard my teammates describe what they did to (not with) their girlfriends as a matter of pride. I learned how to change into my uniform on the bus for away games without a sliver of upper thigh or chest showing.

I sometimes stuffed a sock in my shorts, I ran faster and hit harder, and I got angry that the referees refused to call fouls on me. The one time my coach smacked my butt after a good play, “Alright, Hill!” – it surprised us both; he’d forgotten I was a girl for an instant.

I was permitted to play on the boys’ soccer team, thanks to Title IX, because we didn’t have a girls’ team.

My teammates got by fine just being mediocre. I had to be twice as good just to be seen as OK.

Half the school called me a dyke and the other half said I was sleeping with the whole team. I didn’t know what a dyke was, but it didn’t matter what they called me as long as I could play soccer. It was survival, but I didn’t call it by that name then.

I didn’t dare tell anyone I wasn’t permitted to use the bathroom regularly (no way would I admit I was on my period). I was too afraid to report that the coach was abusing us by pushing all our bodies too hard or yelling at us out of anger, because then I would be called the “girl who couldn’t handle it.”

The principal of my school had made it clear that he didn’t think I’d last long on the team. He’d taken me on a walk before the year began to “make sure I really wanted to play on the boys’ team.”

I didn’t dare raise any red flags. If I did, I would lose soccer.

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Six years later, I graduated from college Magna Cum Laude with a B.A. in Sociology and threw myself passionately into my first “real” job helping people with disabilities obtain employment. I got burned out after a couple years, so I became a professional mover.

When I arrived for the interview, the supervisor offered me an office job. When I said, “I applied to be a mover,” he thought a moment, breathed in deeply, and sent me out on a 14-hour practice workday with his ‘best crew‘ so they could judge my work. When I returned (after the crew reported on my work), he practically leaped across the warehouse saying, “You’re GOOD!” and hired me to move furniture and boxes for a living.

I was the only mover who didn’t identify as male, and I was the only one who had to prove I could do the job before being considered for it.

To be accepted, I had to lift heavier things, run the stairs faster, stack boxes higher, and carry washing machines on my back more often. I had to limit the times I asked for help lifting something because, even if it was heavy enough for three people, my gender always came into play – even though I was actually physically stronger than many of my coworkers.

I was constantly sexualized. I heard things like, “You’re good for a girl,” “When are we getting married?” and other things I can’t repeat here. Much was also said in Spanish by coworkers who didn’t realize I speak the language. They were embarrassed when I replied in Spanish to call them on it.

At the same time I loved that job. I’d never felt so good about the shape I was in, I loved learning the different ways people live and exist in their homes, and I hoped I was laying the groundwork for more women and nonbinary people, if they desired, to enter the same profession with slightly less sexism & harassment.

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It’s been a half dozen years since I last moved a grand piano down a flight of stairs with just two other people.

Nowadays, the “be twice as good to be seen as just OK” battle is no longer about my gender, but about my body.

I became disabled after developing ankylosing spondylitis, the same genetic-ish disease that killed my dad. Since 2013 I’ve been progressively losing the body I used to take for granted.

I’m now keenly aware of how the world is structured around ability as normative, where disabled people are – in name – defined by what we lack, not who we are.

This systemic ableism is evident in how our public support and welfare systems are set up:

Many states seek to enforce work requirements for Medicaid recipients, and many already require food stamp (EBT) recipients to prove we are looking for work; even though, for both programs, a majority of recipients are either already working without access to better jobs or wages, or disabled and unable to work.

And people who are unable to work without debilitating physical or mental consequences are forced to choose between applying for Social Security Disability for a chance at being awarded benefits (usually a process that takes 3-5 years, with a low approval rate), or keep attempting to work and have little to no quality of life until we die.

The system is structured around an “abled until proven disabled” mentality by standards that do not take into account actual quality of life and physical, mental, and financial needs.

As someone who is part of the largest minority group in the world, having to prove I deserve to occupy the space of legally disabled (and deserving of meager benefits) is downright dehumanizing. It’s more than dehumanizing. Who would intentionally pursue a life of begging for table scraps?

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I wrote a post called Being Disabled Is a Job, by the way. I highly recommend reading it.

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Where am I going with this?

Well, there’s this conundrum:

We must prove how much “less able” we are in order to qualify for disability benefits (for those of us who seek them), or to be accepted as disabled; yet, when our friends ask how we are, they expect us to say we’re “doing much better, thanks!”

There’s no both/and for us.

No matter what we say, it’s wrong. If we answer the “How are you?” question with “I’m just fine, thanks!” it could land us a job but leave us feeling invisible for having lied; and if we respond with, “I’m in a lot of pain these days,” we may not get invited to our friend’s wedding but at least we’ll feel validated for having told the truth.

We’re keenly aware of how our split-second answers to scripted questions guide conversations. We either lie about how we’re feeling so the conversation can move on or watch people’s eyes glaze over if we stray from the script and say how we’re really feeling.

The societal pressure to appear more able than we are is tremendous.

It’s reinforced in the words we (society) use and how we say them. Stigma and prejudice show up in the ways we design buildings and public spaces, whether we fund or cut social programs, and more. The message that ‘disabilities don’t belong’ is reinforced in the way that accessibility is a ramp in the rear by the smelly dumpster, rather than a single-level entrance front and center for everyone to use (a part of universal design).

We must be three times as “good” (relative term) as an abled person to be seen as good enough in addition to facing access barriers to workplaces, housing, schools, parks, healthcare, faith communities, and more.

Disability is so stigmatized that it’s pushed under the rug as a taboo subject. We who are disabled learn to separate our “disabled parts” from the parts of us that don’t make abled people feel uncomfortable (FYI, this is like removing eggs from a cake that’s already baked).

We’re objectified, pitied, scorned, or hidden away.

We who are visibly disabled know the classic, “I wasn’t just staring at you” head fake, and we who use wheelchairs know what it’s like to become a piece of furniture that people side-step around or even sit on or push out of the way. We who live with invisible disabilities know too well the “But you don’t look sick, you look great!” line.

If we’re successful, we’re depicted as people who overcame our disabilities in order to achieve great things, as if you can’t be both successful and disabled in one go.

We’re not regularly seen in political campaigns or office, television or movies, or advertisements.

We’re portrayed as being weak both because we are disabled and because disability is often seen as a consequence of being weak.

Often, without our knowledge or consent, we become nameless recipients of someone’s unsolicited, viral do-gooderness, with the underlying message that we are to be pitied and assisted. These inspiration-porn stories become coffee-table ballads for abled people to “Awwww” about:

Some “hero” is applauded for half-dragging a woman who is *vision-impaired (*Note: many people who are blind or vision-impaired do not consider themselves disabled) up a flight of stairs with her white cane because she “looked like she needed help” – this is caught on video and broadcast across social media. Another “hero” is applauded for inviting someone who uses a wheelchair to prom – there’s a picture to prove it. News anchors focus on “how kind, how thoughtful” someone is for doing such a thing for a “helpless” disabled person, but they don’t mention the fact that the woman using the white cane takes the stairs daily and tried to refuse the unsolicited help from the so-called hero, or that the student wheelchair-user had to lobby his school to change the location of prom to an accessible building before inviting his ambulatory boyfriend to the dance.

These stories reinforce a harmful message: that our own disabled bodies are to blame for our inability to participate fully, and that we will always require some good samaritan to help us exist in the world; rather than society being to blame for being structurally, functionally, and socially inaccessible.

The real barriers are not our bodies, but rather the ableist structures in place that prevent us from accessing spaces, places, and experiences on our own.

If we’re talking about freedom to pursue liberty and happiness, in what ways are people with disabilities restricted from that freedom when survival of the fittest is the only acceptable way to be free?

I think we all know the answer.

And here’s my most abrupt ending ever, but I believe there’s value in placing us all in that space of discomfort about an unresolved issue.

Let’s keep this conversation uncomfortable, and let’s keep it going until it reaches everyone.

What’s your first response after reading this? Tell me below.

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Note: my thoughts and ideas reflect my own experiences and are not representative of the entire population of people living with disabilities. Our experiences and ideas are as varied as our bodies.

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If you found this post useful in some way, please consider supporting my work with a $3 tip at ko-fi.com/beingcharis. As a person receiving Social Security Disability, my advocacy work is how I partially supplement my SSDI income of under $1,000/month.