Dealing with Medical Ableism
I have a tracheostomy and use a ventilator to breathe at night. It works well for me, and I have no regrets, but every couple of years, I wind up in the hospital with some kind of upper respiratory infection. As Congress tinkers with health insurance like a Jenga player on six espressos, a recent stay in the hospital for a nasty but manageable bronchitis led me to think about the various awkward personal experiences of actual health care when you’re disabled.
Most of us can remember times when a doctor or nurse acted like they didn’t believe us. Sideways looks and prying, investigative questions often suggest that the medical profession regards patients with disabilities as vaguely compromised.
While I have never had a doctor or nurse directly doubt or contradict me, medical professionals often talk to my family or friends instead of me to gather information when I’m sitting right there. That’s why I prefer to meet with my doctors alone.
Lately, this type of ableism has gotten better, with medical professionals looking to me for guidance on treatment, especially when it relates to my disabilities. In the hospital last month, I never once felt like my word, competence, or intelligence were doubted. That’s a big improvement.
Weird stuff still happens though:
- A nurse’s aide taking my blood pressure jokes, “Your arm is so thin, I could break it!”
- I ask a nurse to take my tracheostomy tube over to the sink and clean the gunk out of it. He hems and haws, finally says he’s not allowed to mess with it, and will call Respiratory to do it instead.
- A discharge planner wants to know whether I drive, if I live alone, and who helps me take care of my ventilator.
The social justice term for these is “microaggressions,” the kind of small humiliations that don’t do much harm on their own, but over time can poison even the most resilient souls. You could also call it “amateurism,” a mix of passive ableism, thoughtlessness, and inexperience.
I do find there’s a little less amateurism in hospitals now than there was, say, ten years ago. More importantly, I find I also process it differently. When that nurse’s assistant made the flip, thoughtless comment about my thin arm, it felt more surreal than offensive. But, I didn’t say anything about it.
A few years ago, I might have stayed quiet out of embarrassment or even fear. I mean, do I really want to piss off a nurse who is taking care of me … with needles and drugs and stuff?
I let it slide this time, too, but for a different reason. I knew it would be cruel to shame this quite young, probably inexperienced woman for a minor faux pas, or worse, complain to a superior who could truly make her life harder in significant ways. Essentially, I checked my privilege. Sick, weak, wired up, and disabled as I was, I had more power to make her whole week suck than she had to ruin my morning.
I did lose my cool with a different nurse who was having a hard time understanding the help I needed late one night. I yelled at him. A decade ago, in the same situation, he would have snapped back at me, turned really cold, or been crushed and wounded. Instead, he somehow managed to back off and give me some space, without making me feel abandoned. A bit later, he accepted my apology with relaxed good humor. If he took it personally, he hid it well, but I don’t think he did. That made all the difference.
Maybe that’s the key to dealing with medical ableism, especially in hospitals. Everyone relax a little. Disabled people: stick up for yourself if you’re a disabled patient, but don’t assume you’re the always the most oppressed person in the room. Medical professionals: listen to disabled patients and try believing what they say. And we might all do well to take those inevitable awkward moments a little less personally.
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Hello Andrew Pulrang,
I agree with you that medical ableism is a significant problem. I encourage people with disabilities to advocate for themselves or designated a trusted other to. This is for many reasons; not only is doing so beneficial for autonomy and independence, but also precisely because of the ableism that exists within the healthcare system.
There are countless examples of this and due to every disability being unique, there are countless manifestations of ableism. Several that I can personally attest to are listed below.
I am a person with physical disabilities as a result of a brain injury and my partner has a chronic illness. We have frequently visited the ER for these concerns, both for me and for my partner.
Before either one of speaks, the hospital staff assume that I am the patient each and every time because I use a mobility aid and my partner doesn’t. I also know that I talk and look different, but that’s my everyday reality now. Since this is just how I live now, I have to wonder what it is about it that they would consider a medical emergency. Certainly, they must see patients where this is the outcome they’re discharged with, so they must know that people with disabilities exist. Then, why do they assume I need emergency medical intervention the moment I walk into a room?
This sort of assumption is hurtful; it’s like public confirmation that you’re the “other”. If I hadn’t been the object of these assumptions for so long, that could have triggered a severe bout of depression. For people with disabilities and even their loved ones, these behaviors are triggering (and, by extension, unprofessional).
The last point that I want to comment on is how you spoke about healthcare staff and professionals talking to others about your care while you’re right in front of them. I can attest to this as well. Because I was diagnosed when I was fourteen years old and underage, they usually defaulted to my parents to ask questions about me.
While this was acceptable and preferable at young ages, it quickly became awkward as I got older. Now, I really resent it.
When healthcare staff and providers automatically defer to people other than the patient, they deprive their patients of the right to emotional support. This becomes the case when patients with disabilities are basically forced to attend medical appointments alone in order for them to be the source where attention is directed at their own appointments.
For example, I can be present for my partner’s appointments to provide support because I look physically disabled enough that they won’t look to me to speak for him, but my partner can hardly be present at my appointments without providers talking to him about my care in front of me.
It both angers and saddens me that healthcare professionals can use members of the disability community against each other like this. It shouldn’t have to be this way. This needs to change.
Keep on keeping on!