disability planning · health

How I Pay For My “Free” Health Care

When I was broke, I had few options. Simple as that. When the person I was married to beat me up, I could not pay to stay in a motel so had to stay in a shelter that hosted almost as much daily threat. When the disability office cut off my payments due to an office error, I couldn’t pay my rent so I had to sleep outside.

But these were the very scenarios that drove me to get cash.

First, I thought: I will save up $700 so that when the disability office inadvertently cuts me off, I can still pay my rent while they take their month to sort it out. Later I thought, “If I save up $3000, I can leave a job whenever I need to.” And on it went. Up and up I saved!

I bought a house.
I sold the house and began investing.
I built and sold projects.

Up and up and up.

Today, my highest priority is my son’s health. I live in Canada, where I’m told health care is universal, excellent, and free. Are we sure?

Following is just one instance of what happened to us. Warning: This account may trigger women who have experienced birth trauma. For those who wish to skip the account, I have put it in quotes so you can easily jump to the closing of this post. Women who have experienced birth trauma, feel free to ask me about resources for healing.

Mothers urged me not to give birth in my mid-size city’s hospital, and to instead drive two and half hours to another one. I thought that was crazy: I didn’t have a car and, even if I did, I sure as heck wasn’t going to take a road trip once labour started! My child came early, so even if I’d planned for a birth elsewhere, it wasn’t going to happen.

After four days of emergency bed rest in the hospital, it was clear I wasn’t going to manage to keep the baby in the additional two days the hospital had hoped I might. Nonetheless, the doctor had to order the attending nurse three times to check my labour progress, as she was refusing to.

When she finally did, I was hurried to the birthing room, where I was subsequently left alone for most of my major labour, peeing everywhere, sick to my stomach, so afraid, in so much pain. I couldn’t physically reach a phone nor the call button.

After some hours, a nurse finally came in. I begged her to call my doula, my friend, a (different) nurse, someone. She refused, said I could call someone later. She never got closer than the doorway. Her final words to me? “You have no right to bring a premature baby into the world.” She turned and exited.

In the morning, my friend arrived, stricken to find my condition. The team soon followed and my baby was born. Presumably for sound medical reasons, they whisked him away to the NICU, put in tubes, brought in scanners. I was so grateful he was receiving care…because for three days I was left to believe he was at risk of dying.

When I finally got brave enough to ask his chances, only then did one explain he was “fine” and would absolutely be living. Oh! No one had spoken to me about any of his being or care, and when I’d previously asked questions, I was waved off and told I had to “wait” or to ask the doctor, who I never saw.

They did not let me nurse him, change him, or bathe him. The nurses did that, allowing me only to watch from a distance. Like all the other NICU parents, I was not allowed to stay with him. Every day I went home alone, pumped, brought the milk up, watch him be all alone in the cot, watch them ignore him crying “because he’s fine” and because they wanted to chat with each other about TV shows.

They said I couldn’t hold him “because it interferes with deep sleep and deep sleep is required for his brain to develop.” It was only later that I learned about kangaroo care, the strong benefits of skin-to-skin care, that what they had said was bullshit. They claimed he was physically unable to nurse, and that therefore I was not allowed to try.

After many days, I became very depressed with the lack of physical contact, lack of option to care for my own child. A visiting nurse finally witnessed what was happening, got my permission to advocate on my behalf, and immediately changed it all. I finally got to take care of him (though still not stay with him). I was so relieved! I bathed him and changed him and held him. I was so happy! As I was holding him, he rooted, found my breast, and began nursing naturally and successfully. The nurses were “surprised” because this was the opposite of their belief.

And then, they told me I could take him home, that he was ready. I was so happy, and got everything ready. When I went to collect him from the hospital, they said, “Who told you that? He can’t go home yet.” The next day, a repeat. “Yes, he’s ready, come and get him,” followed by, “He can’t go home!”

The third day, same. At this point I called the doctor and, finally snapping, yelled that THIS IS NOT OKAY. The doctor apologized earnestly, said they had all screwed up and that, yes, he was actually fine to go home and had been for at least two days.

And this was only the beginning.

While I recognize the gift of all Canadians being legally entitled to access certain services (including birthing) free of charge, I’m aware of many limits within our system.

How are many of our First Nations people treated at emergency rooms? Why is a man who lacks the mobility to complete the journey through the doors stuck outside? Why is a woman with active stroke symptoms, and diagnosed as such, sent home? Why was I, injured to the point of zero mobility, left unassessed and untreated and directed to walk my child thirty kilometres home? How do people presumed to have addiction fare? How many people with suicidal ideation are rejected from services?

In these moments, what power do we have? If we asserts our “rights” or our hopes, what is recorded in the chart? If our baby is treated as though one abandoned, and in our primal craving to care we express our anger, does the medical system become vulnerable or does the patient?

In Canada, health care is universal in the sense that all people have the right to some services, at some point, without having to pay for those directly. I think we’re all deeply grateful for this! At the same time, this health care model is limited. All care outside of those listed services costs the individual directly. Many access services only via the receipt of charitable gifts (medical foundations, etc), an employer’s extended health insurance plan, private premiums, the gift of physicians waiving fees and offering free clinics, and so on. I’m grateful for all of these too.

But today, I also set aside money for access to healthcare. If I were to do it over again, I would pay for the private birthing and postnatal care of my son, even if that meant birthing in another country (albeit one with lower birthing fees and higher infant-thrive rates). But I can’t do it over again, so the money is set aside for other options: orthodontics per his congenitally missing teeth, acupuncture, physiotherapy, dense nutrition, “alternative” therapies that have proven to work in his life, direct disability supports, and so on.

Now, do I think my son should have a right to care that others cannot access? Absolutely not. For that reason, I have also directly funded other families’ neuropsychological assessments, nutrition, kitchens, eye surgery, and more. I also work with three organizations in BC to bring funded care to more people.

Collectively, we have a long way to go. In the meantime, saving in every area of life possible secures us funding for the health of my son and others—a very high priority for me.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s