Healthy friends, stop basing disabled people’s worth on productivity

At the opening of Judeo-Christian Scriptures, the Creator lovingly forms humankind, then crafts and blesses the Sabbath, a sacred day set aside for rest. Rest filled humankind’s first full day. Before people were doing, they were being, and for this alone they were beloved. It’s the portrait of a parent adoring their newborn before the child’s done anything at all. It’s the love we desire unceasingly from our first breath to the last.

A root problem in Scripture, though, is that humans believe they need to earn love through performance. In a perverted pursuit for power, they erected empires. Empires are institutional superiority complexes that assault human dignity. They’re animated by the illusion that some lives are more valuable than others — and from that comes competition.

In Scripture, the Creator liberates slaves from the Egyptian empire and commands the freed people to uphold weekly Sabbath in remembrance that they weren’t made for the destructive rat race that enslaved them to work.

The Sabbath critiques not only ancient empires, but also the competitive philosophies fueling modernity. A symptom of our societal sickness is how uncomfortable the Sabbath feels; an unproductive day stirs anxiety because we’ve attached our full identity to doing.

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Disabled bodies in competitive society

Our world has bought the lie that human worth is justified by activity, intensity, and societal contribution. We might not say this outright, but we live like it. Societal elements reveal this in honor-shame dynamics, economic disparity, how we speak to one another, and more. We depict the satisfactory life as boasting lengthy résumés and vast social pools, while the wasted life is one of obscurity or limited productivity. Imagine receiving this message as someone with a disease or disability.

When disease or disability obstructs energy, opportunity, and ability, it’s an uphill battle to earn value that matches society’s rubric: “You are valuable if …” Consequently, many destroy themselves struggling to keep pace with others. Some in the disease and disability community possess the self-love necessary to kick against that temptation, but frankly, most I’ve met don’t match that profile.

My community aches to feel loved apart from society’s silly qualifiers and quantifiers. It’s exhausting to be crushed by our ailments while also fighting to prove our worth.

Our desire for dignity is shared by all people

Raymond Carver named humanity’s deepest desire in his poem “Late Fragment,” here in its entirety:

“And did you get what

you wanted from this life, even so?

I did.

And what did you want?

To call myself beloved, to feel myself

beloved on the earth.”

Frustratingly, this desire is deepest yet rarely the most powerful. Emotional baggage, fears, and animal appetites compromise our longing to actually try to be loved and love others apart from accomplishment. Many feel powerless against this sorrow. When we define people only by their ability to compete, we perpetuate the very lie that devastates our own self-esteem. We trap ourselves.

I’m notorious among friends for insisting that we drop small talk that dodges profound connection. In moments when people shed their masks, they lament feeling valued solely because of “personal branding,” such as accomplishments, performative expression, and clout. They bemoan life feeling like a self-marketing project they can’t afford to fail. They call this project fragile and temporal, threatened by bad days, economic uncertainty, mistakes. They yearn to be seen fully and truly without filters of what they do or have done. They want to be loved through and through, even if filters fade or shatter.

In these mourning moments, intense love consumes me because I feel our oneness in sharing the same deep desire: to feel beloved. We’re not sparring conversationally or one-upping each other with accomplishment or charisma. We’re simply laying bare our shared desire and resting in vulnerability that defies our competitive natures. The more of these moments I share, the more my subconscious resists categorizing people as more-than or less-than, and the more I see them — really see them.

Stem the bleeding of competition

Competition has hurt us all, especially naturally disadvantaged people like those with a disease or disability.

Can a person with a disease or disability rest without the terror of falling behind or the hurt of being called lazy? Can we escape being treated only as a burden to workplaces, schools, relationships? Can we avoid feeling dehumanized when news and governments present us as resource drains in budget-cut reports? Can we express accessibility needs and energy limitations without being deemed an irritating or even infuriating inconvenience?

The sad answers to those questions sabotage our ability to feel dignified or loved.

We must resist messaging that people are incomplete and wasteful when resting and refraining because that messaging implies the disabled life is incomplete and wasted. The beauty of the disease and disability community proves that’s false. When people see us, really see us, they’ll realize how much of our being was overlooked because they were distracted by shallow definitions of a worthy life.

They only need to open themselves to us.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.