Karli Drew is a writer, creator, and consultant based in Beaumont, Alta.
It’s nearing dinnertime, as my stomach impatiently reminds me. In a few short moments, my personal-care assistant will leave for the day. Right now, I have family to make sure that after my support worker’s eight-hour shift, I can still eat and have my other basic needs met. But I worry that soon, without changes to home care, I will be left on my own without the support I need.
Due to a neuromuscular disorder called spinal muscular atrophy (SMA), I’m a wheelchair user with round-the-clock care needs. My muscles were abundant at birth, but they quickly faded as the “A” in SMA demands. Upon my diagnosis, my parents were unambiguously told they’d watch me die before reaching my second birthday with no way to stop it. (Spoiler alert: I lived – and my appreciation for life is monumental.)
Decades later, my future is once again under threat by forces beyond my control – but this time, it could be easily resolved with proper reform.
SMA has rendered me unable to perform most everyday, ordinary tasks unassisted. Consequently, I can’t be left alone. To be clear: Factors like being disabled and having care needs don’t make my life less worthy, fulfilling or joyful. Although on the surface my reality may appear starkly different from yours, the foundation is the same.
My needs aren’t “special” or even complex; like my non-disabled counterparts, my days revolve around loved ones, work, hobbies and basic needs. I have a team of support workers, funded by Alberta’s self-managed care program, which provides money for individuals to pay and manage their own home-care services. The support workers who come to my home help me live with dignity and autonomy, and protect my health. This allows me to continue working and thriving while also providing jobs to others. Everyone wins.
Up until recently, the vast majority of my needs fell to my mother, who’s dedicated her entire adult life to sustaining my care at the cost of her own health and well-being, while my father worked to keep food on our table. I sought support from the program in my early 20s, but the application process was tedious, emotionally taxing, and difficult to navigate. I was ultimately denied funding because my mother had been providing me with exceptional care, despite the toll it was taking on her. It felt like a punishment for her not neglecting me.
Years later, our circumstances began to change. My mother developed chronic pain and her decades of neglected health issues could no longer be ignored. It became clear she needed to slow down. Motivated by urgency, I worked tirelessly for months, describing my days and needs in great and invasive detail. I submitted upward of a hundred pages of personal documents and cited research into the self-managed care program. The ability to self-advocate this way is a privilege not everyone is afforded – and still, after a six-month wait, I was only granted 8.25 hours of care a day, leaving two-thirds of my life unaccounted for, because funding is normally capped at 60.75 hours per week. Anything beyond is considered extraordinary care and seldom approved. Care insecurity taunts me without reprieve.
As my parents continue to age, I know my days of consistent care are numbered. All of us live with the burden of knowing our mortalities are inextricable. My parents are acutely aware that when they are no longer able to help, I will be forced to forgo meals and my sleep, hygiene, bladder and bowel health will be at risk. Without a support worker to adjust my body, my pressure sores will re-emerge and my health will rapidly deteriorate; I will no longer be able to maintain jobs or purchase essentials.
I say this with full confidence and no hyperbole: I won’t survive without meaningful systemic and social change.
As it stands, the alternatives to remaining in my home are grim and limited. On one hand, there is an institution that is ill-equipped for me, where I would lose my autonomy and quality of life. With facility care workers’ time divided between several residents, I would be at risk of developing severe pressure sores, which can have fatal outcomes, and my chances of succumbing to an illness like COVID-19 would soar because of inadequate care. This option is also terribly uneconomical. Another option – medical assistance in dying (MAID) – would also lead to my untimely, preventable demise.
Growing up, I couldn’t have fathomed outliving my many assigned expiry dates only for my potential downfall to come from an entirely new contender. I went from fearing the unknown of when, not if, I would succumb to my disorder – to dreading the known future ahead of me.
I have boundless hopes and dreams, fears and desires, good days and bad. I’ve lived, laughed, cried, and, like you, I will die one day – but I’m nowhere near ready yet. So I’m urging people to care about care, before it’s too late.