Earlier this week the obituary of 64-year old Ellen Maud Bennett began circulating online. Bennett died on May 11 due to inoperable cancer. Instead of getting proper medical care, she was given weight-loss advice. From the obituary: “Ellen’s dying wish was that women of size make her death matter by advocating strongly for their health and not accepting that fat is the only relevant health issue.”
This piece is dedicated to her memory and the lives of all the marginalized people that have been shortened due to bigotry-informed medical neglect.
There’s no shortage of horror stories when it comes to fat people and medical care. Last week someone in Babecamp asked if we could discuss fatphobia and healthcare, and I found I had a lot to say on the topic. When I thought back to how and when I had learned how to navigate the anxiety-inducing experience of doctor visits, I immediately recalled that medical self-advocacy was one of the very first things my feminist friends taught me in my early twenties. They completely changed my life by teaching me the troubling history of the medical care field, how to approach doctors with a grounded sense of my rights, and how to speak up for myself.
It was 2005 and they were teaching me about how to deal with the overt and covert sexist attitudes that infiltrate medical care: the idea that women "over-experience" or "over report" pain (In 2014 this phenomenon resurfaced in public discourse when Leslie Jamison’s The Empathy Exams became a best seller), the idea that women don't know what's best for ourselves, the idea that it's ok to be condescending to a woman, and the idea that it's ok to comment on a woman's sexual behavior. When I became a fat activist several years later, I found that the tools for self-advocacy as a fat person were similar even though some of the bigoted presumptions were different.
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Here's what those amazing feminist babes taught me (with some addenda of my own!). I use all the tools I'll share in this article, and it has radically altered my relationship to the medical field. Honestly it pains me that I have to offer tools for self-advocacy. Humane, proper medical care should be something all people — regardless of status — have access to:
1. You have the right to terminate an appointment at any time for any reason
If you are made to feel uncomfortable, if you are in pain or if your medical care provider does something that violates your boundaries.
2. Not feeling good about the experience is reason enough to re-schedule, cancel, or end the appointment immediately.
I've had to end appointments mid-observation and it was totally fine. In fact, it was fucking powerful as shit.
3. You have the right to medical advice free from fat negative bias or weight loss recommendations.
With a new provider you can just say: "I need to tell you before we proceed that I have no desire to hear about weight loss. Weight loss techniques overall cause psychological if not physical harm, and I am only here to talk about the symptoms I made the appointment for."
4. Doctors are not gods
Doctors are not mythical, perfect creatures free from bias nor are they smarter than you. In fact, research shows that doctors have more entrenched bigotry than most other professionals. It’s important to contextualize who is self-selecting into the medical field. Though this is certainly not true for all doctors, many are people who elected to be in a field with a lot of power and very narrow notions of care and wellness. It's important to understand that many people who opt into that field do so because they see nothing wrong with the field and aren't seeking to change it. Doctors have a specialized field of knowledge that you are employing them to use — like the way you'd hire an electrician to deal with something electrical. Their knowledge is useful but it does not make them superior to you in literally any way.
5. You can fire your doctor and get another one.
This is not an option for everyone, but people who have the option often don’t feel empowered to use it. It’s more difficult under some health insurance than others, but always know that even though it will be bureaucratic and annoying you can do it if you hit a limit with your current provider.
6. You deserve to be treated with humanity and dignity. ALWAYS.
You can demand that if it's not being offered. I recommend firmly saying what’s happening, how it’s not appropriate, and what is appropriate and respectful.
7. You don’t have to be nice
We feel so much pressure to be nice all the time. I’m not advocating being mean for the sake of being mean. I’m vouching for the value of firmness and boundaries. I feel it’s important to view medical relationships as professional relationships, not friendly relationships — at least at the beginning. Approach these relationships with boundaries and the expectation that your care provider will offer you the care you need in a respectful manner. A little bit of distance can go a long way in helping us set boundaries and say no when we need to. If your provider ends up being amazing and you want to have a more friendly relationship down the road then awesome. But let them earn your trust and don't compromise.
Remember: this is your precious body and you have the right to receive quality, humane medical care. Always.