I’ve said it before– I want a big, powerful, in-your-face Lyme activist movement. I want folks to take to the streets. I want the people neglected by the CDC and IDSA policies and their allies to have sit-ins in government offices and refuse to leave till the unethical studies and conflicts-of-interest with insurance companies are addressed and chronic Lyme is recognized, well-researched, funded, and treated. There is one group who is doing some of these things that I am not joining. Why? They have chosen the slogan “Lyme Lives Matter.”
Come on, people. The slogan is from the Black Lives Matter movement. Black Lives Matter was created after 17 year old Trayvon Martin was murdered. The movement rallies around addressing state and other violences that disproportionately attack Black people who are killed by police and sent to prisons when similar actions by white people do not result in immediate death penalty on the street or prison time (the movement is broader than this, please look them up!). This is an important and critical movement in the face of 300 years of enslavement and anti-black racism in the U.S.
And what did white people do as soon as the movement began? They began using the phrase All Lives Matter in its stead. Yes, people who could understand that we talk about raising awareness for breast cancer without talking about “all cancers,” refuse to acknowledge that specifying that Black Lives Matter is necessary in a movement to end systemic practices that act as if those lives do not. Substituting “Black” with “All,” acts antagonistically, rather than in solidarity, with the Black Lives Matter Movement. It is corrective, telling Black people to reword their own movement to not make their community central in their own struggles.
There are so many problems with the movement to recognize Lyme appropriating this slogan. To name just a few:
- Issues raised by Black Lives Matter are different from the work to recognize Lyme. Changed CDC guidelines, covered treatment, better research are different from facing generations of racialized oppression.
- Racism and white privilege still exist for folks with Lyme disease. As a white woman with Lyme disease, I do not face police violence and incarceration the way that a Black person with or without Lyme disease does.
- It constructs the Lyme movement as white (I have yet to see a Black person use the Lyme Lives Matter phrase, this is not a fluke) and further alienates people of colour.
- It places the movements in competition, or as being at odds, with each other instead of placing the onus on any health-based activism to look at how race, class, and gender all play roles in accessing diagnosis and care (e.g. disproportionate numbers of people of colour live in poverty and therefore, in disproportionate statistics, are not be able to access expensive Lyme treatment; Western medicine routinely and disproportionately dismiss women’s symptoms).
In a culture where white supremacy continues to dominate, it’s so very, very important that white people do not appropriate the work, slogans, and activism of movements run by people of colour. There are many alternative slogans (see pictures). Make new hashtags, it’s not hard. How about something about getting the CDC out of bed with insurance companies? Or just “Lyme Treatment Now!”
And seriously, white people, we need to have dialogues with other white people about ending white supremacy and racism in movements for Lyme disease and chronic health issues.