Kali Welch | Montana
Photo: Khari Slaughter
This interview was conducted by Aletta Brady on July 24, 2020. Sanjana Bacharya, Talia Fox, Abby Haley, and Khari Slaughter contributed to the production of this story.
Kali Welch is a Montana native, a disabled veteran of the US Army, and an overwhelmingly proud Auntie. Having spent several years working as an advocate in the mental health field, Kali now spends her time learning to advocate for herself and others within the disability community.
“My name is Kali Welch. I am a 34 year old disabled veteran of the US Army from Montana. Growing up in Montana made me fall in love with nature and with this idea of the Earth being something that is a part of our lives, not just something that we're here to take advantage of.
I think about camping as a child at Canyon Ferry Lake, just outside of Helena, where I grew up. One of my most formative memories is being up late in the summer, out at the lake, with the water just being so smooth, surrounded by these huge mountains. I remember looking up and being able to see the Milky Way stretch all the way across the sky. There's this kind of peace and centeredness that comes with seeing the Milky Way that has always been with me. When I'm feeling overwhelmed or stressed, I go find a really dark place, sit with the night sky, and feel this sense of calm and connection that I can't really get anywhere else.
Back in 2004, I was 18 and in the army. That’s when I found myself sick all the time. At first, it was just nausea every night. Then, I began having these horrible stomach aches. I'd go to see the doctor and of course, it's the military, so they're pretty nonchalant. They didn't do a lot of tests, even though I was experiencing a lot of pain.
In the army, you have to run every day and I could not do it. Every time I would try to run, two things would happen: I'd be in excruciating pain in my feet, and I would throw up every time. This happened continually for four years. I couldn't pass a weight test or a PT (physical test) test, so I couldn't get promoted. I was well respected by my superiors, but there was really nothing that they could do. So when it came to the end of my four-year enlistment period, I decided it just wasn’t going to work for me. So I got out of the army and went back to school.
I studied psychology at school and, at first, everything was fine, but the more I started getting involved in my studies, I started experiencing very strange symptoms. I would be in the middle of a lecture and suddenly, I wouldn't be able to comprehend anything. I would get so tired at the end of a lecture that I would have to go home and sleep in between every class. I just didn't have the energy to do anything. One day I woke up and had vertical double vision.
“Why is it so hard to just accept that what people say as their experience is their actual experience? ”
Key Facts
IgG4-RD or Immunoglobulin G4-related disease is a chronic inflammatory condition which can affect various organs (NCBI).
Current evidence suggests that IgG4-RD is an autoimmune condition, like rheumatoid arthritis and lupus (American College of Rheumatology).
As a recently discovered disease, the nature and features of IgG4-RD have only been understood in the past decade. For this reason, there are still many challenges and open questions regarding diagnosis and treatment of the condition (NCBI).
I was scared. I didn't really understand what was happening and doctors couldn't figure out what was causing my symptoms. So I kept going to school, trying to make things work and at the same time I was going to see different doctors all the time. I was 22 when my primary care physician told me she thought my symptomology could likely be due to a brain tumor or multiple sclerosis. It was overwhelmingly scary to hear that, and go through years of multiple MRIs, CT scans, poking, and prodding with nothing showing up.
Somehow, I pushed and was able to make my way through college. After I graduated, I got a job as a youth case manager with a nonprofit, which I really loved, and then, I stepped that up to be a child and family specialist. My job involved going into homes and working with parents and children who are having difficulties connecting, and helping parents find ways to connect with their children. But, again, I got to a point where I was able to work only two or three days a week and was having to call in sick the rest of the week. So I left and went to a different job that I thought was going to be less physically demanding, but I found that even just the emotional stress of working a job was pretty rigorous. All the while, doctors weren't able to figure out what was going on.
I was talking to my rheumatologist in Helena about my symptoms, and she said there was this disease called IgG4-Related Disease, and it was really only discovered as a comprehensive disease process in 2003. Because it was so new, most doctors hadn't heard of it and didn’t know how to diagnose it. She decided to run a biopsy to see if it matched up to IGG-4, and lo and behold, it did. So that was the beginning of even just understanding what my disease process was, after a 10-year process of seeing doctors and trying to figure it out.
Key Facts
Multiple studies shed light on the gender disparities in our medical systems, which are dismissive of pain experienced by women. For example, female patients in the emergency room with severe abdominal pain wait 16 minutes longer, on average, than male patients with the same symptoms. Women are also more likely to be misdiagnosed than men, which can have fatal results. Women are also seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack (Harvard).
Looking back, I think about how a lot of people with disabilities often feel disregarded, or treated like they are exaggerating or lying about their symptoms. Women, especially, are distrusted or dismissed when they talk about their health. The first neurologist I ever saw flat out told me I was depressed and hysterical and just disregarded my symptoms. Doctors also told me vertical double vision isn't real and if I was experiencing it, it was a psychological symptom. I also think about my aunt who, for as long as I've been alive, had been dismissed even in my own family as kind of crazy, maybe a hypochondriac or an attention-seeker. It wasn't until I was diagnosed and they tested her, that she tested positive for it. This made my brain crack open, and I was like, what have we been doing to this woman her entire life? Why is it so hard to just accept that what people say as their experience is their actual experience?
Kali with her dog in the snow
After the diagnosis, I was able to start taking an appropriate treatment, which was pretty intense. The way IGG-4 RD affects the body is in two phases. The first phase is the inflammatory response, which can happen in any body system, but typically kidneys, liver, heart or pancreas. The second phase is once that inflammation starts to go down, the body lays way too much scar tissue, which impedes the body's ability to function properly. Treatment includes physical therapy twice a week for the physical symptoms, chemo therapies, and also just psychodynamic therapy for dealing with a disease process that nobody really understood.
By the time I got diagnosed, I had already left the workforce. I realized that there was no way I could afford my home and my treatment, and so I started looking at different places around Montana that would be close enough that I could drive to for my medical care if I needed to, but cheap enough that I could afford to live there. I ended up moving to this tiny little town called Choteau in Montana last fall, and I have been trying to make things work since then.
Key Facts
The Supplemental Security Income (SSI) program is a federal program in the United States designed to support aged and disabled people who have little or no income by providing income supplements to help meet their basic needs (SSA).
The Social Security Disability Insurance (SSDI) is also a federal income supplement program which provides assistance to disabled persons and/or certain members of their family, if they qualify certain conditions that make them eligible for social insurance (SSA).
I really thought that with my experience at Disability Services, I had an understanding of the system and would have an upper hand navigating it, but it was two full years before I was able to get support from Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). The intervening time was one of the hardest struggles I've ever experienced. It was just a constant feeling of having to prove that you're disabled, and that really forces you to internalize what it means to be disabled and confront how the world sees you. Even then, my SSDI check barely offers me enough money to survive on, and I’m constantly having to pick and choose between housing and medical costs.
When trying to understand the connections between disability justice and climate justice, I think about two things: the influx of people into Montana and the impact of climate disasters on people with disabilities.
Wildfires are one of the biggest climate impacts I have witnessed in Montana. We always had summer wildfires, but as I've gotten older, they have gotten more and more intense. I remember in 2017, there was a month or so where you couldn't see the sky, you couldn't see the mountains, you couldn't see anything. The sky was just bright red the entire time. The ways that disasters like wildfires can impact our bodies is just overwhelming. Even healthy people are unable to function normally in that kind of environment, but when you have a disease process that limits your ability to function, it gets dangerous and scary really fast. Then mental health makes it more overwhelming. I live right on the edge of the Rocky Mountain front, which is beautiful. It's been this amazing gift to have these mountains so close to me, but the risk for wildfires there is pretty dramatic. I also need to travel between Chouteau, where I live now, and Helena, where most of my doctors are, which is about an hour and a half away. There are several mountain passes in between there too. So there's the risk that I might not be able to even physically access my treatment if we see wildfires, and there's a risk that my health will deteriorate greatly if and when we see those fires again.
“...there was a month or so where you couldn’t see the sky, you couldn’t see the mountains, you couldn’t see anything. The sky was just bright red the entire time.”
Key Facts
Wildfires in the Western U.S., including in California, Colorado, Idaho, Montana, and New Mexico, tend to be larger and burn more acreage compared to the East (Congressional Research Service). Changes in the climate are creating warmer, drier conditions and increased drought has doubled the area affected by forest fires from 1984–2015 in the Western U.S (C2ES).
With the wildfires, there is fear of loss of life, loss of home, and loss of safety. Another thing is just the feeling of loss of connection. When the sky was red for like 30 days, I felt like I was on mars or something. The Sun was almost completely gone, the mountains gone, the Milky Way stars completely gone. There is still this hope that once the fire is gone, everything good will come back, but there's also this growing fear and recognition of the fact that that's not necessarily true. We're seeing this in so many places—in Helena, California, Australia—the way the fires are decimating the landscape, we might never get back what we had before. That's what feels really scary in my soul.
Montana is really pretty pristine compared to a lot of other places, and we don't experience some of the more severe effects of climate change that coastal regions of the US and other parts of the world are experiencing. A lot of people who no longer want to live in those places see Montana as a form of escape. Mostly very wealthy, affluent people are buying large pieces of property in Montana, and that is shifting the economic landscape of the area. It has forced a lot of people out of communities they were once part of, primarily in lower socioeconomic classes, which have a disproportionate number of people with disabilities. There are a lot of towns and cities in Montana that used to be really affordable that no longer are, and that's the position that I found myself in. This option to move in order to reconnect with more pristine nature is only available to people who have the money and resources to relocate as they wish. This then forces those who have lived here for their entire lives to re-think how they're going to live.
Key Facts
Emerging research highlights the phenomenon of climate gentrification. This occurs when investors and wealthier homeowners shift towards areas that were previously unattractive and housed more low-income communities because they are less vulnerable to acute climate impacts. This escalates costs in these areas, forcing lower-income households to move (Bloomberg CityLab).
What I would like to be different in terms of disability and the connection with climate justice, that's a really hard question. For me, I think it all boils down to two concepts: connection and community. There's this feeling of desire for community that is really important. That’s when we look forward to making not just my life better, or the lives of my friends and family, but the lives of all of us. I think it does a real disservice to ourselves and to others when we separate ourselves. I think there’s a lot of value in taking the time to understand other people's stories and other people's points of view.
Disabled folks have this innate resilience that is profound and really special. They have this ability to pivot and to make changes on the fly, and say okay, I can't be in space A any more, space A is gone and no longer an option. So what are spaces B, C, and D going to look like, and how can I make them successful and beautiful? I think there's something really powerful about the ability that disabled people have to create something beautiful within limitations, as opposed to fighting against limitations.
The lower socioeconomic classes have a vantage point of things that maybe the wealthier members of our society don't get. I think with money comes the ability to ignore. I think that's where this idea of privilege comes from, there's this ability to shield ourselves from what's happening around us. But when you have a disability and when you don't have any money, you lose that privilege, right? You're kind of forced to see the world as it is and find ways to make it work from the perspective of reality as opposed to hope. In some ways it's really sad that so much of our population doesn't have the ability to live from this really hopeful place. But there's also this beauty in saying this is where I'm at, and this is how I'm going to make it work. There is still hoping, just that it's a different kind of hope. I think that really harsh open-eyed look at where we're at is really important to move forward in any kind of honest and realistic way.
A portrait of Kali
I think the hardships that have come with disability have absolutely created the need for compassion. First, for myself: the ability to hold myself with love and acceptance has helped foster my ability to hold others with the same kind of compassion. When we look at what our world is coming to terms with right now, whether climate change or racial injustice, the ability to have compassion and seek honest connection with people wherever they’re at is really important. This idea of radical acceptance of ourselves and of others is something that I'm still learning to do, and others in the disabled community are teaching me how to do that all the time.
“This idea of radical acceptance of ourselves and of others is something that I’m still learning to do, and others in the disabled community are teaching me how to do that all the time.”
In the end, it really does all come back to this idea of community and connection. I think these are the two pieces that we have kind of disregarded in our society right now. The more that we can come together with acceptance of who each of us are as individuals, the more we can all grow as a collective. There's a kind of peace in letting go of preconceived notions of success in order to embrace one another where we are at and move forward together as a collective. I think that’s where this magic space can happen.”
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