By now you may know that last Thursday the House passed bill to repeal the Affordable Care Act aka “ObamaCare” much to the horror and collective held breath of many folks in the disability community who have “pre-existing conditions.” Staggering list is jaw-dropping and pearl-clutching giving no peace of mind and little doubt where the puck is going and coverage is concerned.

Disability advocates weren’t surprised but that didn’t stop us from expressing outrage at one half of Congress hell bent on dismantling healthcare as we know it. There was little consolation in it being pointed out that vote still has to make it through the Senate which is also Republican-led. To add insult to injury was the celebratory vibe replete with high-fives all-around as if something significant was done to forward humanity.

Read: Hubris of the (faux) highbrow imbibing on impending doom of the masses of lower-class. Congress full of frat boys patting themselves on backs after chugging a keg and hugging, happy the exclusive party had their name on the invite.

As a person with a congenital, physical disability that has progressed with age and requires more reliance on mobility aids and respiratory care, I’ve always known life with a “pre-existing condition.” In fact, it has informed many of my choices, helped shape my awareness and sharpened advocacy skills.

I’m also a Black woman with a disability and since disability comprises about 20 percent of the US population at nearly 57M and Black folks number at about 13 percent that intersection is the perfect recipe of folks negatively impacted by healthcare policy changes and high treatment disparities. The numbers don’t translate into a win-win situation especially when we know that disability is a result and reaction stemming from poverty.

Existing in the periphery

Historically, many disabled women, especially disabled women of color exist in the continuum of needing care, care-giving, and being community-builders. Many of us putting our needs secondary to taking care of our children, elderly parents, and involved in mobilizing efforts to make a difference in our communities and not always by choice but out of necessity. We’ve existed in the periphery, moved to the margins with backs against walls and it’s what’s more than likely kept us vertical but that position is no place to remain indefinitely or seek residency.

The business of living with disabilities is both art and science and juggling act can be stressful to say the least. From sun up to sun down a succession of questions to meet daily requirements and attain customized care with dignity and respect to get all needs met prior to closing your eyes every night.

Disabilities are acquired through birth, accident, illness, or are age-related in essence disability is a part of life, happens in nature. Disabled folks exist in every facet of life and span the globe and have quality of life affected by but not limited to structural and systemic access. Access to housing, adequate healthcare, education, economic opportunities, social settings, etc are considerations that compound living with disabilities.

Media complicit in perpetuating negative stereotypes

On the rare occasion mainstream media covers disabled persons beyond binaries of pity and pedestal, it validates what I already know about many in our demographic; we are a resilient and adaptive bunch. Our duality of being, living, in a world not built from our blueprints but modified after the fact, if at all, means were aren’t typically thought of in the same vain as our non-disabled counterparts. And yet somehow we’ve managed to survive, and have some quality of life, albeit routinely unevenly applied. Gains in one area seem to spotlight gaping holes in other areas. The work of disability rights/justice forebears is relentless.

When our *comprehensive* stories are not circulated, shared, amplified they don’t get absorbed in the collective consciousness. Without absorption there’s little to no recall and every rare expression becomes newsworthy and not “normalized” as an everyday fact. The danger in that is that such misconceptions of the disability community get harbored by larger society and persons who might run for office. This might then translate into harmful policy measures and our current dangerous dilemma where disabled persons sit positioned, yet gain, at the mercy of lawmakers instead of enjoying peace of mind.

The nerve of us for existing and wanting quality of life.