Let's Not Vent Shame
My friend Tanya with her cute cat.
A few weeks ago, when I was making the rounds on Twitter, I commented on a tweet about COVID without really thinking. The tweet was about the levels of exposure you would risk during this time of the pandemic, specifically eating out at a restaurant. I quipped something to the effect of, "No thanks, I don't want a vent with my soda and side of fries."
A few moments after I sent it, I started to parse in my head what the intention of my tweet response was versus what my tweet actually suggested. And what it inferred is something I am referring to as "vent shaming." As a proud disabled woman and a disability advocate, I regretted what I said, so this post is my way of calling myself out. It is also my effort to bring attention to the topic hoping that other people, disabled or not, won't vent shame, either.
When I said I don't want to be on a vent, it came from a fear of dying. Unfortunately, the sad fact is due to the nature of COVID, a large percentage of people who are put on a ventilator in the course of their treatment end up dying. And for the record, I am not a fan of dying.
But aside from COVID, there are thousands of disabled people who live full and active lives on a ventilator, either all day or for several hours a day. I had a tracheostomy in my early 20s and was faced with the possibility of living on a ventilator myself. I regained enough strength to breathe on my own, so doctors removed the tracheostomy. I still sleep with a ventilator and at night using a full-face mask.
Ventilator use falls into an interesting and complex nexus of health status and human worth. In our ableist society, you see someone on a ventilator, and the immediate assumption is weakness or illness. I can understand the perceived fragility of a person on a vent. After all, a machine is literally breathing for them. I think the narrative takes an unnecessary and harmful turn when that assessment then translates into worth-- that a disabled vent user's life isn't a worthy life.
And there is absolutely nothing that could be further from the truth. As my friend, Tanya Krueger says about being a vent-user, "People fear what they don't understand."
I get that people fear what they don't understand. But I don't accept it. Maybe it is time people get educated. It is also time that we all start examining our own biases and preconceived notions about different kinds of disabilities and our own beliefs about another person's "quality of life." Let me be clear: it is okay to want to be as healthy and independent as possible, as long as you are the person defining that for yourself. When I was 25 years old and facing the possibility of being a full-time vent user, was it a prospect that I celebrated like it was the best news ever? Of course not. I refused, however, to let it define my self-worth. I knew that whatever happened, I would figure it out. I would find a way to live my life with as much happiness, purpose, and passion as before I was admitted to the hospital.
Another example I want to share that concerns some misplaced fears and prejudices from within the disability community revolves around using power wheelchairs versus manual wheelchairs. Or, to put it another way, power wheelchair shaming. It's subtle, but it happens.
My husband has a condition called Osteogenesis Imperfecta. It is a disease he was born with that causes his bones to break easily. For his safety and increased mobility, but primarily safety, he uses a power wheelchair. While indeed, accidents can happen in both types of wheelchairs, if a person using a power wheelchair is wearing their seatbelt, the chances of having a severe injury in one compared to a manual chair are much less. And yet, I have heard some OIers who use manual wheelchairs say things to the effect of: "Oh, I don't need a power wheelchair,” or “I don't want a power wheelchair,” or “I can't imaging having to use a power wheelchair." Even though doing so would increase their mobility and safety.
Such comments are truly a diss on the power wheelchair and those who use one. It's nuanced, but it is there. This line of thinking is very damaging inner dialogue that disabled people tell themselves and each other about being disabled. Non-disabled people do enough shaming of disabled people through their acts of ableism. We don't need to be doing the same to each other.
Our society has a deeply rooted default setting that conflates disability with poor health, sickness, and weakness. Sometimes this is referred to as the “medical model” of disability. It is so deep that many disabled people need to reexamine their own thoughts and beliefs on this subject. Because every time anyone—disabled or not— rejects a treatment, mobility aid, or device out of fear of seeming “more disabled," I would hope they would ask him or herself a couple of questions. 1) what is wrong with being disabled, and 2) in their rejection, are they making a defacto commentary on what they truly believe about those who use those devices.
Moving forward, I will keep questioning myself for hidden shadows of ableism and work harder at exposing them. I am also going to try to think slower than I tweet. At the end of the day, I always want my intention to align with my values. A core tenant of these values is that disability is a normal and natural part of human diversity, and there is nothing to be ashamed of about being disabled.
If you want to read a great article profiling some disabled people tell about their own vent life experience, I recommend this New Mobility Article.