A conversation about disability with Jen Deerinwater.
Osiyo! I’m a citizen of the Cherokee Nation of Oklahoma and am bisexual and Two Spirit. I’m also multiply disabled, chronically ill, and I’m immune-compromised. I’ve struggled a lot with chronic pain and mobility issues since the age of 13. I’m 41 now, and my health is getting worse with age. At this point, I’ve given up on the idea of ever being “healthy.” Now it’s just a matter of trying to manage the best I can and have some quality of life.
I grew up in rural Oklahoma and Texas, between what’s now officially designated as Cherokee Nation’s reservation and in Abilene, Texas. I’ve primarily called large cities home since leaving for college. I currently live in the occupied Piscataway land known as Washington, DC. I’m in the belly of the beast. When we’re not in COVID times I typically travel a fair amount.
I’m a freelance journalist and the founding executive director of Crushing Colonialism, which is an Indigenous media organization. I work in a lot of community organizing spaces and do a fair amount of public speaking and I provide trainings for grassroots organizers and organizations.
How do you negotiate concepts like “healthy” or “normal” as a Two Spirit person with a disability?
So this is me speaking for myself. I’m not speaking for other Two Spirit people or bisexual people or disabled people. For me, it’s a struggle. My body is never going to conform to what we deem healthy. Along with my health issues and disabilities, I’m Two Spirit and I’m fat. I think our idea of what’s healthy and normal, at least within the so-called United States is rooted in white supremacy and colonialism, in sexism and heterosexism, and fat antagonism.
Within disability justice circles, there’s this idea of being proud of being disabled. I struggle with that. As someone with chronic pain, it’s hard to feel pride. I feel like I’m battling with my body every single day. There is not a moment of my life since the age of 13 that I have not been in pain, and that pain is getting worse with age. It’s a struggle for me to accept my body when I feel like my body is such a battleground.
Now, could things be better for me? Absofuckinglutely! If I had the health care I need, if I had the social supports and resources I need, if I could live where I wanted, instead of making decisions based on accessibility or global climate change I would be in much better health. But even if I had everything I needed, I’d still have chronic pain.
It’s hard to find a provider who is responsive to me as an Indigenous person, a bisexual person, and a Two Spirit person. I had total knee replacement surgery in December, so I just got released from in-home PT to outpatient PT. I went for that evaluation yesterday, and the white physical therapist asked me what I did for work? I mentioned I run Crushing Colonialism. She asked, What’s that? And I said, It’s an Indigenous media organization. She laughed and said, I don’t even know what that means. I was like, Which part? She said, Well, what is Indigenous?
I had to sit there and explain to her what Indigenous means and who Indigenous people are. These are the people who are supposed to help me. These are the people who are supposed to help me have a better quality of life. Here in DC, I’m still just trying to get people to understand that Native people exist, that we’re still here. There are multiple levels of erasure. Being native, being disabled, being bisexual, I spend a lot of time just trying to get people to understand that I’m real. How do you get your needs met when the people in power don’t even think you exist?
How has COVID affected all of this?
I will say that the areas that I have paid the most attention to in terms of COVID impact is how it’s impacted Indigenous people and disabled people. Both communities have been very hard hit by COVID.
In terms of disability, it’s not just the fear of getting COVID. It’s fear of not getting care. Are you living somewhere where the hospitals are so overrun, that if you go in for one of your regular health problems, are you going to be denied care? A lot of us have gone without regular medical care. In the beginning of quarantine, the pain management center and the outpatient surgical center I go to for care closed down. I was going without my pain management treatments.
I need a home health aide, but home health aides haven’t been prioritized for vaccinations here, so it’s not safe for me to have one. One DC hospital denied people like me the right to bring our aids with us to appointments during COVID. What if I was somebody that needed assistance going to the bathroom? What if I needed assistance with a drink of water or something? I’d go without that as a result of these blatantly ableist and dangerous policies. We also had a lot of cuts to public transportation, including some of the paratransit services in DC. What if you have to use paratransit? Not everybody has a car, not everybody can just get an Uber or Lyft. What if you have to use the bus?
COVID has impacted communities like mine in so many ways.
How, if at all, do you navigate shame around disability?
I was 34 before I started saying I was disabled, and it took me a few years to really get past the shame of that, the shame of not being able bodied, of having these particular needs and asking for these needs to be met. You’re afraid you’re not going to be able to get a job or keep a job. It can impact your family and your romantic life.
We live in this very capitalist society where disabled people are seen as being drains on the system rather than people keeping the system going. It’s everyone for themselves. Before colonization, we Natives—I’m not saying that we lived in a utopia, we weren’t perfect—but we had a different value system. And that value system was about caring for one another. And I think a big part of ableism is colonization, this idea that who’s inherently worth more is tied to who can create more wealth.
Do you have any teachings or thoughts about pre-colonial approaches to disability or mental illness?
That’s something I’m trying to learn more about. I will say that, at least for my people, everyone had value. Everyone had worth. Everyone had a role to play, and every role was important. Our ancestral lands are in the Appalachian Mountains, and there’s no surviving in the mountains on your own. You have to do that as a community. What we would today consider disability or mental illness was probably looked at very differently before colonization.
What’s frustrating now is that I do see a lot of ableism within Native communities. There’s a lot of Native spaces where I can’t even get in the door because no one’s made sure the space is accessible.
I struggle with the notion that, “We are warriors,” because as a warrior you don’t want your enemy to know your “weaknesses,” and disabilities can be seen as weaknesses. When we talk about decolonization, that has to also include honoring and valuing all our people, not just the ones that we think of as healthier, able-bodied, or cis or straight. Every relative’s life is valuable. We need to return to that.
What is your message to young Two Spirit disabled youth?
I think I would say that the world is not always going to be a kind place to you. And while it may be difficult to feel this way, all the time, there are people who see, love, and value you. You are part of something much larger than just yourself. You have the beauty, ferocity, and resilience of so many ancestors backing you, including our 2SLGBTQIA+, Deaf, disabled, ill, Mad, and Native ancestors.
Don’t ever beg or thank the colonizer for crumbs. Demand that your needs are met because your life has immeasurable value. As Mia Mingus said, “access is love.” Disability accessibility isn’t a burden nor is it something that can be swept under the rug. Access is how we show love for all of our community members. Those that are committed to justice and decolonization will show up for you and to hell with the others because they’re not worthy of your brilliance.