Researching stigma: the good, the bad, and the ugly

Conducting research into stigmatised groups means that you spend a lot of time thinking and reading about something that is inherently not very nice. It’s depressing and dispiriting. And if you’re a member of that stigmatised group, it’s depressing and personal.

It’s not something you can just hang up on a hook as you leave the office either. Sometimes I envy my colleagues who study eye movements or language processing at the neuronal level. Not often. But sometimes. When I go out in the street and see fat-shaming advertising; when I turn on the television and hear yet another soon to be ex-favourite show sink to the level of fat jokes; when my friends can’t go to the doctor for so much as a sore throat without being told that they’re going to die, possibly, by tomorrow, if they don’t agree to have their internal organs amputated.

Guilt by association can be fun too. Recruiting people to take part in studies is surprisingly difficult. Most of my studies are looking to hear from higher-weight individuals. I’m not sure why it’s so difficult given that we apparently make up 2/3 of the population in most Western countries. This week I posted a recruitment notice on a body building forum. I used to belong to a similar one and know that not all of these places are filled with competitive body builders – many people are there to lose weight, get fit, and change how they feel about themselves. This particular one was recommended to me by a friend who was a member there. So I wrote to an admin, got permission to post, and posted. I went back to check a couple of days later, only to find a couple of dozen offensive and insulting replies that became ever more personal, including commentary on pictures of me that had been taken off the internet and suggestions of how I might like to spend some of my free time. Oh, and I was banned by a different moderator who claimed I was just a spammer. I am of course devastated because obviously I’d really like to go back there and engage in conversation with some of their charming members.

And then there are the letters. When you do activism work, or even as a researcher, people want to tell you their stories. They are generally long, heart-felt, and totally heartbreaking. And you cannot turn away. Must not stop reading. These individuals are crying out to be heard, to have their pain acknowledged. Sometimes they need advice or help in finding resources, but often you may not be able to help them in practical ways. Usually, they do not need you to. They need you to hear them. To let them have a voice.

So there’s plenty of bad and a stomachful of ugly, but there’s good too. The person who reads your poster at a conference and bursts into tears as she throws her arms round you. The emails from people who took part in your study, telling you that they participated, thanking you for asking the questions, and wishing you luck with your research, even though they will not play a further role in it. And that one person who tells you that your work matters to them. That they didn’t know it was ok to just be, to be themselves, that they had worth, until they read what you wrote, heard what you said, felt that you did not judge them. That that was even an option for them. I do it for that person.