Making This Blog Anti-Racist: Understanding Illness, White Privilege and Racism

On this blog, I have written about how ableism puts unfair barriers in place to prevent people with illnesses from participating fully in society. I have talked about how women are often disbelieved and dismissed by the medical establishment. But I have failed to write about how black people, indigenous people, and people of colour are at a greater risk of developing pain and illness, and undertreated for their conditions, compared to white people. As a white woman, I have been in the privileged position being able to disregard racism and its effects. But silence is complicity.

In a recent post, I wrote about how I realize that I have to do better. I shared links to powerful black female voiceswriting about their experiences living with illness and disability, because right now, their voices are more important than mine.

But I thought that I should go deeper into the process, as a white person, of unlearning my own internalized privilege and racism and how to become an ally. Perhaps these are words you have read recently, but you aren’t sure what they mean in practice.

To understand racism, you have to understand the difference between individual racism (card carrying KKK members who hate anyone from a racialized group) and systemic racism (in which white individuals benefit from having power within social institutions and reproduce that power in a way that oppresses racialized groups).

White privilege helps to maintain systemic racism. This includes benefiting from unearned advantage due to being white, and keeping that privilege through active means, or simply by remaining ignorant and silent about it. For example, white privelege includes the fact that you are more likely to be believed and treated for your pain or illness. (And since ableism and sexism already make it hard to get adequate treatment, you can begin to see how pernicious racism in medicine is for people of colour).

If you are white, and haven’t really considered what that means for how you are treated differently in society compared to people of colour, here are some examples of the unearned advantages you have because of the colour of your skin. Peggy McIntosh explains that:

“I have come to see white privilege as an invisible package of unearned assets that I can count on cashing in each day, but about which I was “meant” to remain oblivious. White privilege is like an invisible weightless knapsack of special provisions, maps, passports, codebooks, visas, clothes, tools and blank checks.” Here are some examples she identifies:

  • “ If I should need to move, I can be pretty sure of renting or purchasing housing in an area which I can afford and in which I would want to live. 
  • I can be pretty sure that my neighbors in such a location will be neutral or pleasant to me. 
  • I can go shopping alone most of the time, pretty well assured that I will not be followed or harassed.
  •  I can turn on the television or open to the front page of the paper and see people of my race widely represented.
  •  I do not have to educate my children to be aware of systemic racism for their own daily physical protection.
  • I am never asked to speak for all the people of my racial group.
  •  If a traffic cop pulls me over or if the IRS audits my tax return, I can be sure I haven’t been singled out because of my race.
  •  I can go home from most meetings of organizations I belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance or feared.
  •  I can chose blemish cover or bandages in “flesh” color and have them more or less match my skin.”

When I first read her article, White Privilege: Unpacking the Invisible Knapsack, it really opened my eyes for the first time into the operations of everyday racism, and my own ignorance and participation in the effects of systemic racism. But understanding isn’t enough on its own. 

> Read this primer on becoming an ally: 

TO BE AN ALLY IS TO...

  1. Take on the struggle as your own.
  2. Stand up, even when you feel scared.
  3. Transfer the benefits of your privilege to those who lack it.
  4. Acknowledge that even though you feel pain, the conversation is not about you.
  5. Be willing to own your mistakes and de-center yourself.
  6. Understand that your education is up to you and no one else

> Additionally, from The Mighty, here are 11 Ways to Support Black Lives if You Can’t Go to A Protest:

Get Educated

One of the first steps you can take as a White person to understand why these protests are happening is to get educated. Read about Black history from Black writers, your role as a White person in systemic racism (and how to dismantle it) — and take the initiative to do this work on your own. Here’s a great list to get you started:

Add Your Voice to a Petition

Petitions are just one tool we have to demand change and accountability from those who enable police brutality. You can find and sign some of the major petitions demanding justice here:

 

 

 

 

 

 

Get Involved With a Racial Justice Organization

In addition to nonprofits fighting for justice reform, you can join or donate to other racial justice organizations working to dismantle racism. Here are a few suggestions to get you started:

Support Black-Owned Businesses

As businesses are hard-hit by the COVID-19 pandemic, now is a great time to reevaluate where you’re spending your money. In addition to paying attention to a company’s messaging about racial justice, you can directly support Black-owned businesses:

 Support Justice Reform

Justice reform, from ending police brutality to ending mass incarceration, play a major role in working against anti-Black racism in the United States. Here are just four organizations you can get involved in or donate to:

Say It Out Loud: Black, Chronically Ill, Disabled Lives Matter

Copy of Collective Chronic Wisdon (1)

When I started this blog, the purpose was to share my illness journey. As a reader of  chronic illness blogs and social media accounts, I had found my own experiences validated and understood, and I wanted to pay that forward to others. I hope that readers here feel encouraged and supported to better navigate the challenges of living with illness, perhaps through finding a new perspective, or a practical strategy in one of my posts. I strive to balance a realistic look at the difficulties we face with the hope that it is possible to find greater wellbeing despite illness. But if I want everyone who finds their way here to feel that way, I have to be explicit about equality: Black lives matter. Indigenous lives matter. The lives of people of colour matter.

As a patient advocate, I have written about how ableism puts unfair barriers in place to prevent people with illnesses from participating fully in society. I have talked about how women are often disbelieved and dismissed by the medical establishment. But I have failed to write about how black people, indigenous people, and people of colour are at a greater risk of developing pain and illness, and undertreated for their conditions, compared to white people. And my silence is a message. Because, to not say anything when people are literally screaming for their lives is to say a lot.

On top of ableism and sexism, black women with illness face racism (women of colour, and indigenous women do too). This impacts their medical treatment:

“This study provides evidence that false beliefs about biological differences between blacks and whites continue to shape the way we perceive and treat black people—they are associated with racial disparities in pain assessment and treatment recommendations. Black Americans are systematically undertreated for pain relative to white Americans (Hoffman, 2016).”

In fact, the stress of experiencing racism can predispose black women to chronic disease. Professor Amani Allen at UC Berkeley says:

“Racial discrimination has many faces. It is not being able to hail a cab, getting poor service in stores and restaurants, being treated unfairly at work, being treated unfairly by police and law enforcement and being followed around in stores because of racial stereotypes. 

We found that experiencing racial discrimination repeatedly can create a state of biological imbalance that leaves certain groups of people more susceptible to chronic disease (Berkely News, 2016).”

I realize that I have to do better and ensure I include racism when I write about the barriers and challenges of accessing treatment and fully participating in society, otherwise I erase the experiences of black women as well as all women of colour who live with illness. I have to unlearn my own internalized racism and privilege.

At the end of the day, it’s more important to hear the words of women who are black, indigenous, and of colour than to hear my words on the subject. I’d like to point you to just a few of the many black bloggers and social media influencers you should follow who share their journeys living with illness and disability:

> @MsMoReal (Twitter) Free Spirit. Blogger. Lover of slurpees, trap music + the color orange. I have #myastheniagravis so I blog about that. #MGwarrior #spoonie #chronicillness  Blog is at ‘Is Was Will Be’ 

>@Imani_Barbarin (Twitter) she/her Black girl magic+disabled pride |MA Global Comms | my thoughts | #DisTheOscars + #AbledsAreWeird #ThingsDisabledPeopleKnow Blogs at Crutches and Spice 

>@ohheyteigh  (Twitter) who is the creator of @BlackDisability  and the Black Disability Collective on Facebook. @mnwfpc sweetheart #BlackDisabledLivesMatter

>@DawnMGibson  (Twitter) Founder of #BlerdChat + #SpoonieChat, #Paleo #GlutenFree #FoodSafety #Spondylitis #Arthritis

>@Tinu (Twitter) Founder #EverywhereAccessible. Black. Disabled. Writer. @HotMommasProj Fellow. #MySpoons #ChronicPain #cancer Typos? #BrainFog!

>@Keah_Maria  (Twitter) Writer/Author.Bi Icon. l created #disabledandcute

>@breenikki  (Twitter) Writer. Married. Mama. Believer. Beatface. Teacher. AutoImmune + Chronic Illness + Chronic Pain. A taker of Polonius’ advice to Laertes. Blogs at Cynical Ingenue

In addition, here are 9 Powerful Black Female Voices to follow who are educators, speakers, and activists that are facilitating important discussions on anti-racism, diversity, and inclusion to motivate people to change their beliefs and address issues of race and racism to resist and dismantle oppression.

Sources: 

Hoffman Kelly et al. Proc Natl Acad Sci U S A. 2016 Apr 19; 113(16): 4296–4301.

Berkely News (2018) https://news.berkeley.edu/2018/10/05/racial-discrimination-linked-to-higher-risk-of-chronic-illness-in-african-american-women/