The Invisible Costs of Invisible Disabilities

I used to work at a disability support NGO, and continue to volunteer there nearly six years after my contract ended. The organization served disabled people who were deeply impoverished and bereft of government aid they were entitled to. Among numerous other duties, our social workers conducted home visits to check on clients and monitor their care. The number of clients they had struck me as remarkably high, even though I didn’t see many (visibly) disabled people in my day-to-day life.

Reality took about a month to sink in: Disabled people are everywhere, but purposefully kept out of the public eye. Most of our clients’ caregivers and families were also impoverished and unable to accommodate their charges. Some disabled relatives were sequestered to their rooms out of shame or superstition. Those who could make it into town required energy and willpower fit for mountaineering to do what others consider ‘the basics’. It was a hard lesson in marginalization; the active and passive measures society takes to push those deemed undesirable out of sight.

Being transgender, I’m familiar with the drive to ‘pass’ or be read as my gender by others. It’s effortless now, but it used to extract much of my daily morale. Disability is also a stigmatized status that people feel pressured to obscure. Being visibly disabled can coax out small courtesies, but we know full-well that employers, insurers, landlords, and other powerful actors would be happier if we’d just not be disabled. I discuss disability frequently. I feel like I must do it. Sure, I’m a blatherer and I love broadcasting my words, but I also know that if I stop talking about it, society’s default trajectory will render me intangible.

My disabilities aren’t immediately noticeable, so I receive the treatment a young woman gets out in the wild. Still, it’s not without cost or incident. This is the unspoken cost of living with an invisible disability.

Missed opportunities

One of the most frightening things about disability is missing out on work opportunities. Given the accelerating capitalist hellscape we live in, that’s highly understandable; any impairment that impedes the ability to work likely impedes the ability to survive. My primary impairment is related to breathing and temperature regulation. This rules out any physical or outdoor work. My best productivity is confined to a narrow temperature and humidity band — preferably air conditioned.

I tell people that I became the exceedingly fussy reptile I wanted as a kid.

Naturally, my employment options are drastically limited by these needs. I never relished the idea of physical labor, but there are plenty of jobs in and around my field that involve being out and about. Those wouldn’t work for me, especially on days my lung ‘acts up’ and breathing hurts. My breadth of employment is basically seated office work, preferably from my home. The move toward work-from-home during and after the COVID-19 pandemic was nothing short of heaven sent for me.

The (mostly) invisible nature of my disability also makes it easier for people to pin my unhappy days on a personal failing. Without the visual justification that crutches or a prosthetic can provide, I find that I have to explain myself to others before sympathy comes my way. The same goes for state welfare. My group of conditions isn’t well-known or supported by the state. State welfare in South Africa is in a dreadful place, and I wouldn’t be especially eligible even if I tried.

That sounds dreary, but I find that missed personal opportunities sting a bit more. When I was a teen, I wanted to learn welding and snorkeling. That’s not happening. My desire to exercise is on a semi-permanent hold until I can find anything more strenuous than yoga that’s still safe for me. I’ve turned down many invitations from friends because I didn’t want to show up and sit on the sidelines while others got physical. I can work around accommodations for my job, but not being present for my loved ones sometimes leaves me a feeling of seeing life pass by without me.

I’m an indoorsy person, but it would be nice to have The Choice to get out and do stuff when I feel ready. I’ve adapted to these missed opportunities by diverting my energy into alternate paths. My hobbies are all indoors, and I’m always online. The latter isn’t always the ‘healthiest’, but it’s better than isolation from society and friends.

Energy and planning

I’m intimately familiar with budgeting my resources. Yes, money is a factor when my healthcare needs exceed others’, and my work options are also narrower. Moreso than most, I must ration energy of every kind. My social battery is naturally low-capacity, and I’m almost miserly about how I spend it. Getting dressed to leave the house in winter leaves me breathless before I even depart. The respiratory nature of my impairment forces me to plan normal excursions more carefully — itself a time-consuming step.

Most of all, I feel the need to ration every breath I have left. Like cancer endurer Janis Chen, my lungs operate between lively joy and gradual deterioration. My condition isn’t nearly as alarming as hers, but there’s no ‘cure’ for this either. When my health starts deteriorating with age, I expect my lungs to lead the charge downward. In the meantime, I have the same certainty as my friends do of seeing the next decade, and the one after that. If I have fewer breaths left than others, it takes a lot of planning to make each one count.

Before my thirties, I lived a very moment-to-moment life. I kept an eye on my impairments, but I addressed each developing issue when it happened. I happily unburdened myself of long-term worries by making them Tomorrow’s Problem. My friends’ Tomorrow Problems involve career mobility, long-term relationships, and the occasional child. I share most of these concerns (no kids, please.), but I also have to entertain the question of what if my vital organs start breaking down earlier than they should?

There is doom-and-gloom in my life, but I’m also adapted to my daily reality. Despite a pressing need to account for my body’s many limitations, it’s all background noise to me. I don’t fear for my life — I did most of that in the Intensive Care Unit. Being real for a sec: ICU leaves very little room for anything but fear and anxiety. And then the bill hits you.

Small victories

When I write about the inevitability of disability (not just the possibility), I always tell of the incredible capacity of people to adapt to their changing situation. If the situation requires it, I can roll it up in an inspirational wrapper about willpower and inner strength. I think the reality is closer to throwing your hands up and saying yeah, I guess this is it now. Might as well do something. That grounded attitude has taken me from flare-up to flare-up without fail.

I pad my flare-ups in good humor. When my friends say I’m being stubborn, I take a REALLY deep breath and threaten to pop my lung on purpose (actually very difficult). I named my malfunctioning lung Spicy Fred and accuse him of numerous unlikely crimes. Each time the characteristic pain begins in my chest, I remind myself that the surgery to save that lung did work. I’ve already lived through the life-threatening version of that event. This is an aftershock and it’ll pass.

As much as this life is filled with invisible costs, I’d be disservicing myself utterly if I didn’t pay attention to its invisible victories. I can celebrate the capabilities I do have alongside the things I missed. I’ve been victimized inside and out by my ongoing life story, but I’m still nudging my life forward every single day. To me, taking a deep breath is a privilege I fought for. I won’t set my standards as high as those with stronger bodies in blatant denial of reality. I won’t allow society to extract value from me without clawing back everything I need to live and a bit more.

When I explain my condition and that it happened at 20 years old, the usual response is sympathy or a solid oof. I don’t see it as condescending. I suffered something that makes others fearful and acringed, but I’m still living and planning to live. That’s complimentary to the capabilities I still have and the ones I’ve developed since it all went wrong.

I’m not gonna say it made me ‘stronger’ though. That’s measurably untrue. At best, it made me funnier.