Vilifying care costs ostracizes disabled, chronicly ill

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This article was published 01/06/2024 (841 days ago), so information in it may no longer be current.

I’ll never forget when I overheard my health-care providers talking about how expensive it was to care for me and questioning the point of it. I won’t say at which hospital this happened. But I will say it wasn’t the first time I was made to feel like my life was worthless because of my disabilities. Arguably, disabled people are one of the largest oppressed minorities in society. We’re also the least likely to be heard or able to participate in the political process. If we are seen, it’s because of people staring at us because we look different. Or they are staring because our disabilities are not obvious and questioning why we’re using the handicapped parking stall.

I’ve been disabled for many years now. I know my disabilities make people uncomfortable and uneasy. I have lost friends — whom I thought were good friends — because of it. I have overheard less than kind remarks about how much it’s costing the health-care system to keep me alive. I know there are people who think I am a waste of taxpayer dollars. My TPN alone (intravenous nutrition) is about $1,000 a day. It costs several hundred dollars a day for my care at Deer Lodge Centre. People with disabilities are often made to feel like economic burdens, by society at large and even by their own families. We are made to feel guilty about things we don’t have any control over.

We like to hide people with disabilities. Many are still living in institutions. Institutions are good for bureaucracies, but are terrible for people. We know this. Research shows this. And while a lot more people with disabilities are living in the community today, that doesn’t mean they are living well. The world is not set up for people with disabilities.

Having to rely on services like Handi Transit means planning ahead, and there’s really no way to be spontaneous. They also prioritize transportation for medical appointments or to go to work or school, so if you want a ride to the store or to visit a friend, you might have to wait or go when you don’t really want to. Wheelchair service is a bit better but it’s also more expensive. You still have to plan ahead.

For people with mobility issues, getting around is extremely difficult. A lot of places are still not accessible. My name is on a mortgage for a condo I have never seen and never will see — because of the stairs. I realize how bizarre that sounds. Have you ever tried to open a door and hold it open while in a wheelchair? It’s impossible. Or to navigate an uncleared sidewalk with a walker in winter? It’s dangerous. Even finding an accessible washroom in public can be challenging. And often, much like with disabled parking spots, they are being used by entitled able-bodied individuals. On behalf of disabled people everywhere: don’t use the handicapped washroom if you don’t need to.

Being disabled is expensive. And most disabled people are living below the poverty line. I have to pay $35,000 a year to live in chronic care. I have no other options, except choosing Medical Assistance in Dying (MAiD). Sadly, some disabled people are choosing to end their lives because they can’t get the care they need. Disability advocates correctly warned about this outcome. I agree with MAiD, but not because of lack of access to proper care. That’s not its purpose. I have had people — including health-care professionals — “encourage” me to pursue MAiD. It’s extremely upsetting when you’re trying to stay alive and have people trying to persuade you to give up.

Not all disabilities are visible. Mental illness, chronic pain, autism and learning disabilities are all common invisible disabilities. For those with invisible disabilities, they are constantly having to justify and explain their situations to others. They face discrimination and oppression. But people with non-visible disabilities are entitled to the same rights and accommodations as those with visible disabilities.

Although disabilities are more common than people think, we don’t see a lot of disabled people represented on television or in advertising, magazines or films. Why not? Disabled people are capable of doing many different things. I’m often told I accomplish more from a hospital bed than most healthy people do in the community. Don’t judge people based on their limitations.

I always say we as a society can be judged by how we treat the most vulnerable. Speaking recently to a friend in Europe, we were at a loss to think of a single country that does a good job looking after disabled people. Too many struggle to get the care and supports they need to live full lives.

I’m not ashamed to say I am disabled. My disabilities help shape who I am. They make me a stronger person. They give me courage and resilience. I won’t apologize for my disabilities, because they aren’t my fault. I choose to find ways to contribute to society despite my limitations. In fact, I make a point of identifying as disabled, so people see that even with profound disabilities, lives still have meaning and value.

Just because I’m bedridden and live in a hospital doesn’t mean I can’t, and don’t, contribute to the world around me.

Shawna (Shoshana) Forester Smith is a chronically ill, disabled Ojibwe writer and health-care advocate who lives on a chronic-care unit at Deer Lodge Centre. She has spent more than 14 years being a patient with all kinds of experiences, including being on life support.