How redemption narratives fail us
America loves a redemption narrative. If you’re not familiar with the term, it’s a way that we tell stories about our lives or collective experience such that when something bad happens, the story still ends positively with what we’ve learned or what good has come from that time. In the United States, redemptive narratives are one of the master narratives. Researchers Kate McLean and Moin Syed define master narratives as “culturally shared stories that guide thoughts, beliefs, values, and behaviors”. It’s a way we tell stories so that it’s recognizable as a good story in American culture.
If you are American, consider how you learned about the creation of the United States. Likely it went something like — a small group of explorers bravely set out from England in search of a new world. It was hard, they lost a lot of people along the way. They encountered people who already lived on the land. They ended up fighting the greatest military superpower in the world and won their independence. The root of our country’s stories are built on moving quickly from the challenge to the triumph— glossing over the genocide that we committed against indigenous peoples, chattel slavery, great hunger, and disease.
The story we’re told is that we won.
Nearly 300 years later, these narratives are alive and well. Not just in political discourse, but in personal ones. It’s in the stories of people who overcame cancer to run ultramarathons, or people who lose their entire families and become motivational speakers about how to turn pain into joy. There is a sense that the story isn’t worth telling until we can show how we have grown, learned, changed or found something good from the terrible part. That we should hide, move away from others while we are going through these moments of incredible duress, until we have something positive to say about it. People don’t want to hear the story from the middle of battle, they want to hear the story about how someone won.
I, like many people, have fallen into this narrative. When one of my closest friends died by suicide and my disability symptoms suddenly got a lot worse, I literally didn’t know how to be in the grief without a silver lining with people who weren’t also experiencing it. It felt so impossible to respond to “how are you?” with anything other than “I’m fine” or better, when in truth I was having the worst time I’d ever had. When I was at parties and responded with “I’m not doing great actually”, it was like I was an alien, people didn’t know how to respond. So I just stopped going.
The reality is that some things are just bad and hard.
Before going further, I want to make a few things clear. I absolutely believe in the power of people to hold both immense pain and great joy, often at the same time. It’s something that makes us human. My aim here is to problematize the knee jerk reaction to turn painful experiences immediately into joy.
After my friend died, my disability symptoms got so much worse. I was actively seeking answers and diagnoses, going to multiple doctors appointments a week, and newly using mobility aids. When I finally got diagnosed with EDS, POTS and MCAS after years of pushing and researching on my own, I also got access to medication and supportive therapies. This meant I was going to the doctor less, and after a few years, using my mobility aids less too. Suddenly I was regarded positively again. People were quick to tell me “you look so good” or “I’m so happy to see you feeling better”. Which felt so immediately incongruent with my experiences.
Having access to diagnoses and supportive medication and therapies absolutely did help me integrate disability into my life, but I was by no means cured. I was better, but I wasn’t “better”. The experience of disability as an ongoing part of my life was flattened by those comments, it didn’t leave space for the messy middle — where I’m able to work, drive, or exercise and am sometimes fully taken out by symptoms.
Around this time, I learned the phrase redemption narrative, and about the body of research that says that redemption narratives have led to better health outcomes. Quite honestly, my first response was rage. What is redemption to someone who has a lifelong illness? What does buying into a redemptive story get us? By focusing so wholly on redemption, what do we lose?
As this idea has tumbled around in my head for the last five or so years, it’s become clearer and clearer that redemption doesn’t always leave room for acceptance. I can so clearly see two different lives I could be leading based on the stories I tell about me and others like me.
With a redemption narrative: I would be working towards a cure for my illnesses, and would be doing everything I can for a cure to come in my lifetime. I would be talking a lot about how I have used western medicine, food, and exercise to overcome my illnesses (or at least the impacts of them). I would be privately devastated every time that didn’t work because I would see it as a personal failure, that I let my illnesses overtake me. I would be working to help other people minimize the impacts of their disabilities on those around them. I am more concerned with my disability being inconvenient for other people than in the ways I can best live alongside my disability.
With an acceptance narrative: I accept that I have a lifelong disability, that will always be with me. I seek out others who are disabled and learn from their wisdom. I believe in the power of mutual aid and interdependence of community being a source of strength. I see disability as a part of me that I am not looking to cure, just looking to live alongside. When symptoms flare, I have resources to buoy myself in community care and keep moving (still working on this). I see myself as deserving to be in spaces even when I am experiencing the height of my disability and I advocate for this kind of accessibility for myself and others. I talk about disability as a fact of life, that me and many others will experience in our lifetimes.
I think part of my challenge with redemption narratives is that they are so individual, especially in American culture. The story about the person who overcame cancer to run ultramarathons focuses on what the individual did, not on the doctors and nurses that supported them, the community that made them meals, took them to appointments, and offered strong shoulders to cry on. A focus on acceptance also asks us to make a home where we are, building beauty there for the long term. If you aren’t familiar with Mia Mingus’s work, I’m so excited for you that you get to read this essay about the myth of independence for the first time.
As people in general, and disabled people especially, we need to lean more heavily into the joy of interdependence. In interdependence, we can still celebrate change and improvement, but we recognize the collective effort and energy it took to achieve those aims. Especially in this moment of change in the world, we owe it to ourselves and each other to dive into giving and receiving community.
