My ass and the oceans

Let down by the state and in-home care companies, Ally Bruener struggles to balance care for the planet with her own vital needs.

Photo: Ally Bruener

As someone who feels an empathetic connection to Mother Nature, I’ve spent far too long trying to persuade my inner circle to be more mindful of the ecological implications of their daily decisions. I try to practise what I preach but, as an exceedingly crippled gal reliant on government-funded in-home care to survive, it’s hard to find feasible sacrifices to steady my environmental conscience.

The amount of help one receives in the US is traditionally determined in a formulaic, finite manner that doesn’t take into account personal values or long-term endeavours. While programmes differ from state to state, few provide sufficient staff-time to meet even the most basic needs.

I was born with a progressive, genetic, neuromuscular disease that virtually glued my ass to a wheelchair by the age of seven. That also led to scoliosis and a pre-teen spinal fusion permanently shaping me like a treble clef. My strength and range of motion resemble that of a leashed penguin. My lungs? Well, they certainly don’t appreciate their confined abode but can still inflate through non-invasive, albeit mechanical, ventilation. For now.

Regardless of the new ways my body will find to fail me in the future, I won’t receive additional care funded by the state. With an allotment of 45 hours per week, I’ve maxed out the time available.

I’ve often heard the ableist comment: ‘If your care is a full-time job, you ought to be in a facility that can handle it.’ The people who say this fail to realize that everyone’s care is a full-time job, the only difference being that non-disabled people have the option of being their own unpaid intern.

After years of being let down by home-health agencies, I had exhausted all the local companies; the burden of staffing dropped into my atrophied lap. If the professionals couldn’t find people willing to work for a wage barely above the minimum, how was I expected to have more success?

After much debate, and with the emergence of Covid-19, I decided the safest plan was to use the state’s funding to hire the one person who knew the job almost better than I did – my old man. This allowed him to quit his public-facing career as a manual labourer and save his energy to cushion the strain my needs have put on his body. While not the ideal solution, it’s the most mutually beneficial arrangement we can implement with the resources available.

Even with Pops being a loyal, reliable employee, I’m still at the mercy of bureaucratic red tape. The tasks he’s allowed to complete must be pre-approved by a government contractor and I struggle to find the flexibility necessary to alter my routine. Asking him to do additional work off the clock feels unfair and disrespectful to his personal space, especially after over 30 years of loyal, dedicated support.

Everyone’s care is a full-time job, the only difference being that non-disabled people have the option of being their own unpaid intern

It is within these constraints that I am trying to be a good eco warrior, but it’s not a very accessible path.

Like so many others, I had a visceral reaction to the video that went viral of that sea turtle. Seeing the straw pulled from its nose gave me flashbacks to the nasogastric feeding tube I required when I underwent the spinal fusion procedure. The sensation of its removal was comparable to sneezing out slimy, barbed wire. But straws are such a fundamental part of my hydration needs, I can’t simply forgo them.

Of course, reusable straws are a thing, but my inner-monologue went something like: ‘How often can I realistically expect to have the spare three minutes to keep them at least mildly sanitary? Maybe I should buy them in bulk so I always have one available, but that seems counterproductive!’ I do use them, but the tea stains could probably get up and brew their own cuppa.

I began to internalize the harm of single-use plastics. I felt so guilty I cried. Like, full-blown, swollen-eyed, blotchy-cheeked, ugly cried. Why am I getting emotional over a damn turtle?! A beautiful, majestic, oh... I just started my monthly red tide. Cue Dad (yes, he helps me with menstrual care – no, it isn’t awkward) haphazardly adhering a pad to my underwear, not properly folding over the wing, and unintentionally getting it stuck in my bush.

There’s nothing like an unexpected bikini wax to trigger an epiphany – I should try reusable, absorbent period panties! But, again, the maintenance. Ugh. My straws don’t need washing this week, right? There are few things more perspective-inducing than watching my father rinse bloody underwear in a sink full of dirty dishes because there weren’t any other non-life-sustaining chores that could be put off.

Speaking of life-sustaining, if I don’t get something fresh and green inside me soon, my body might revolt. And, no, I’m not banging Kermit. Unless he’ll drive me to a farmers’ market. As with many people under the poverty line, I eat what’s convenient, accessible and affordable. With limited opportunities for grocery runs, I focus on frozen food or meals with minimal prep time.

I’ve only recently paid mind to how that influences my health and that of local supply chains. Even with a limited income, I want to spend in a way that benefits my community. At a time when local farmers are struggling to survive, it has become my mission to procure their delicious goods.

After much scouring, I finally found a local family farm that makes deliveries of produce each week, during the growing season. Thanks to a handful of healthy recipes, that can be completed before I’m done on the shitter, I’m able to feel good about some of what I eat and occasionally even trick my carnivorous dad into eating veggies and a healthier diet.

My care isn’t just about me. It’s about putting me in a position to positively contribute to my family, community and world. When assistance becomes a scarce resource, this assertion of my autonomy appears as a luxury. Finding an extra 15 minutes to sort recycling shouldn’t be detrimental to my health. I’ve accepted I’ll never be perfectly green, but I refuse to believe there isn’t a practical middle ground that keeps both my ass and the oceans cleaner.

Ally Bruener is a writer, former stand-up comedian, and public speaker from northern Kentucky. Born with congenital muscular dystrophy, she uses her sardonic, dark wit to contrast the sweet and innocent stereotypes society forces upon the disabled community.