Erin's Story

My name is Erin Novakowski. I’m 22 years old and in the fourth year of my bachelor’s degree at the University of Calgary, where I am double-majoring in English and Political Science. I am also a published writer, a disability activist with an online following of over half a million, and I hope to one day become a high school teacher of Language Arts and Social Studies. I have been a full time power wheelchair user since I was in kindergarten. My disability, called Spinal Muscular Atrophy, is a progressive neuromuscular condition that I was diagnosed with as a toddler. As a result, I require help with most physical tasks such as getting in and out of bed, showering, preparing meals, getting to class, etcetera.

"I have loved learning since I was a little girl."

In high school I was an advanced placement student on honour roll, and I graduated as my class salutatorian. Applying for university was an exciting and stressful time, as it was for all my fellow students. But, I have one very vivid memory from this period of my life that I’d like to share with you. It was in this one single moment that I, an optimistic and motivated 17 year old full of dreams for her future, realized what kind of truly terrifying threat I would live under, every day for the rest of my life.

In one of numerous meetings with home care in preparation for my transition to adult healthcare services, my family was being told that because my care needs are “so extraordinary,” they should expect to have to pay the thousands of dollars monthly not covered by AHS for my care — forever. I asked the homecare employee managing my case what would happen if my family or myself was no longer able to cover that cost, a hauntingly relevant question as my parents are nearly 70, with financial responsibilities and health problems of their own. Without any consideration for the gravity of what I was being told, the worker was quick to answer that I would be placed in an institution.

"From that moment on, I could never again manage my care or even think about my future, without being faced with the grim fact that I am alive, getting an education, and active in my community, because of absolute sheer luck."

I live everyday with an acute awareness that if I were born into slightly different conditions, or if anything about my current situation changes, I would no longer have any autonomy over what kind of life I’d live. My passion for supporting my community, my interest in learning and teaching, my inherent value as a human being with friends, family, and a partner who I love—none of these things matter at all under the current system of home care. I am never able to focus on what I could become or what I could contribute, because I must focus on finding thousands of extra dollars every month to keep myself alive.

"Limited resources should not be used as an excuse or justification to dehumanize disabled Albertans. It breaks my heart to think about all the people who, for any one of infinite reasons, were not as lucky as I have been so far."

All the people that have interests, dreams, talents, and goals that will never be recognized, simply because the homecare system—the very branch of government that claims as its goal to “help people remain well, safe and independent”—has failed to help them. My greatest hope is that we can one day live in a world where luck does not determine whether disabled Albertans just like myself will get to experience a comfortable, dignified, independent life. I urge you to help us make this possible, by telling the government that you care about what happens to your fellow Albertans. Tell the government that they must prioritize increased funding to home care services, and reorganize the systems that control the livelihoods of disabled people.

Take action for home care!