Endo Battery

Endo Year Reflection: #13

• Alanna • Episode 103

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In this episode we reflect back on two inspiring episodes that remind us that there is a need for accessible and equitable healthcare. We're reflecting back on episodes 82, 89, and 90 from guests Chanda Hinton and Bryce Rafferty. Their journeys reveal the gaps in traditional medical models and advocate for an integrated approach to health that empowers individuals with disabilities.

• Chanda Hinton shares her experience navigating disability care 
• Limitations of traditional medical models highlighted 
• Importance of integrative therapies for enhanced quality of life 
• Disparities in healthcare access for those with disabilities discussed 
• Insights on the Americans with Disabilities Act (ADA) 
• Practical resources for understanding disability rights provided 
• Call for collective advocacy and communal support in healthcare reform

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your favorite cup of coffee or your cup of tea and pull up a chair at the table with me.

Speaker 1:

Can you believe how quickly this year has flown by? It feels like just yesterday. We were setting goals and dreaming big for 2024. Now, as we're staring down the new year, I want to take a moment to reflect not just on our personal journeys with health, but on how we approach change as a whole. The EndoYear Reflection Series is like a guiding light for sparking thoughtful transformation. This series is all about nuggets of wisdom, moments of clarity and inspiration to fuel change we all see, not just for ourselves, but for the communities we're part of.

Speaker 1:

One of the topics I became deeply passionate about this year is accessible and equitable care for all. It's not just a lofty goal, it's a necessity. In episode 82, I sat down with the amazing Chanda Hinton, who opened my eyes to this in ways I never expected. Chanda, who experienced a spinal cord injury that left her in a wheelchair, shared her journey of finding life-saving medical care, but also the stark realization that traditional treatments alone often fall short in providing a good quality of life. Chanda introduced us to the power of therapeutic modalities, how they can significantly enhance and prolong quality of life, not just for those with visible disabilities, but also for people with invisible ones. It was a conversation filled with relatability, motivation and yes, a little frustration. Here's a clip from our chat that truly captures her insight.

Speaker 2:

Why that injury created what I shared earlier was because, you know, when I was shot, I was thrown into a medical model rightfully so, to save my life, as I was just shot, but also into the medical model as it relates to how was I going to address my spinal cord injury for the rest of my life. And what that initially looked like was, after rehab, I would sit in a power wheelchair and I would consume a ton of medications for the rest of my life, and after doing that for probably a decade, that was not the way that my body or, I think, many, many people are able to sustain, in the sense that it wasn't a vibrant. I was constantly sick. The medication would cause additional secondary conditions. So when I turned 21, I started having chronic pain.

Speaker 2:

I was added another medication, which was a Percocet, during 2003, when the opioid epidemic was at its peak, and so I became extremely sick by utilizing the traditional medical model, and from there I got really sick. I became bed bound, I weighed 59 pounds. I needed to be hospitalized for medical intervention, which I find a little bit interesting, like I was shot and I used medical intervention to save my life, but then the overall utilization of medication then resulted in me needing medical intervention again to save my life. So it was interesting to see the difference or the variance between those two scenarios, knowing that medicine has such a beautiful place in our lives and, at the same time, can also be a detriment to our lives. And so that balance, or seeing those variances and finding a balance, was really, really critical to me, and so that's when I started doing integrative therapy. I wanted to make sure that I balanced the medication that I needed to take, the medication I didn't need to take, but then also substitute acupuncture, massage and movement to my body.

Speaker 2:

Given my paralysis, I had no ability to move anymore, Like. So if I could have, if I could have gone to a gym, awesome if I was still moving. But because I can't move, I have to rely on other humans to move my body, and that doesn't mean that that's any less. I still should go to the gym. And if that looks like it's a person that's doing that for me a physical therapist, an adaptive yoga provider, a massage therapist it's essential to living a vibrant life as someone who doesn't use mobility aids or face the challenges of visible disabilities, I hadn't fully considered the hurdles others encounter daily.

Speaker 1:

This conversation made me realize how often we overlook experiences of those with disabilities, visible or invisible, in discussions about endometriosis and chronic illness. Chanda also shed light on societal challenges for those with disabilities. Here's a moment that really stuck with me.

Speaker 2:

Yeah, I think that my sense granted, being a woman with a spinal cord injury, there's some that apply to that component of it, but there's bigger pieces that comply to all of us, right? I know that with the work that I've been doing, it's been very devastating to see that the center is more accommodating and physically accessible to people with disabilities than what we've always seen as the traditional model, such as physician clinics or specialty clinics, meaning, like, if you want to go get your mammogram, there's not very many machines that can do that, that are accessible to people. So the thing is is that we've been living 30 years post the ADA, which was created in 1990. And we are still coming up against the most disparaging civil rights violations in our healthcare system that really, to me, are completely unacceptable. And this has kind of been the new project that I've been working on. And I believe again that these are providers that went to school, wanted to become a physician, because they believed in healing, they believed in wanting to help people and again, they've been caught up in the bureaucratic process of it because they only get paid so much by so many individuals in order to make what it is that they need to do get done and they're limited in terms of what is covered. And so and some of these, I would say, providers are within institutions, that if the institution doesn't support it, they as a provider have very little authority to make any level of change. And so I see all of those one the systems being the issue, and then I also see our own kind of state and federal government needing to step up to the plate and just say, hey, there's some violations occurring and compliance is going to start coming down and so that people, all people, have equitable access to healthcare and can be put on a treatment table, get their pap smears once a year. Like those things are not happening today. Like people are being turned away from healthcare because they have a disability, because people are so uncomfortable, have never had the education or the financial ability to care for them, and so it's interesting. So those are the major barriers kind of highlights there's. Obviously it's far more complex than that.

Speaker 2:

I think the other components is that there's lots of biases in our health care systems, as well as gaslighting, and so you know the health care. Gaslighting is just one of those things that I feel a lot of folks with disabilities unfortunately have to experience which results in a lot of trauma, because, right when they say that, oh, it's all in your head like, oh, you don't know what you're like, you know, like we're the provider, it's like no, no, no, no. There's this thing now called you know, patient advocacy, and there's this thing called that what I feel is real and it's not okay for you to determine otherwise. And so I think that there's that ongoing piece, as well as the biases that providers, depending on their age, age or their cultural background, some can look at disability in a very disparaging way.

Speaker 2:

There was an article of a research where there were all these physicians in the room and they asked them to raise their hand if they believed that their patients with disabilities could be healthy. And no one raised their hand because their association that disability and health, good health or disability and wellness could coexist wasn't even a reality to them. Wow, that's crazy to me. So we're being served by providers that don't even believe that we can be healthy people. Yeah, what kind of direction and care are they going to give us? Not very good, right, like they might just think that they're trying to put band-aids on things just to keep us alive for as long as we can, but in reality it's like no, we can live for a really long time because we're healthy, productive people in our society. So it's interesting.

Speaker 1:

But Chanda's story was just the beginning. It fueled my desire to learn more about the intersection of disability and advocacy. That curiosity led me to Bryce Rafferty, a staff attorney with the Colorado Cross Disability Coalition, who joined me for episode 89 and 90. Bryce took us on a deep dive into the Americans with Disabilities Act, or the ADA what it is, what protections it offers and how it's evolving to address invisible disabilities. Bryce doesn't just talk about laws. He gives us practical tools for understanding our rights and navigating systems that well, let's face it, aren't always designed to support everyone equally. Hearing Bryce talk about this inspired me to dig a little bit deeper.

Speaker 3:

The ADA defines disability as any kind of condition, physical or mental impairment that substantially affects or limits a major life activity, and so you're going to have a lot of argument over what does substantially limits mean? What's the major life activity?

Speaker 1:

Right.

Speaker 3:

And there has been, and there will continue to be, a lot of litigation and argument about that. There have been actually recently. This is one thing I'm working on. I am putting into plain English, as best as I possibly can, a bunch of new rules and regulations that are correlated to the Rehabilitation Act, which is kind of a sister act of the Americans with Disabilities Act, and how these laws work, at least federally, and I mean it's similar with states. But I mean you take Congress right, and so Congress identifies a problem and in the case of disability it's okay.

Speaker 3:

We have a very large subset of our population that is not integrated into society. They're not in the workforce, they're not able to have independent lives. These are people who are capable of and want to be in society, but they're in assisted living facilities under very difficult conditions, often having to deal with neglect, abuse. So the whole idea really and this came out of the culture revolution in the 60s and 70s Initially the Rehabilitation Act was passed in 1973. Americans with Disabilities Act, the ADA, was in 1990. And then there's a bunch of case law and courts interpreting these things and then these regulations that come out.

Speaker 3:

But going back to the Rehabilitation Act this summer a bunch of new rules and regulations were passed that go into great depth and help in defying disability.

Speaker 3:

They take that definition that's in the ADA, you know, substantially limiting major life activities, and what an impairment is.

Speaker 3:

And people might have heard about the Supreme Court decision that overturned Chevron, and I mean you might like hear that phrase and have no idea what it means. But basically what it means in practice is that Congress and other administrative agencies, like the Department of Health and Human Services, for instance, in this case, have to be extremely specific when they are defining both who benefits from certain rules, how they're supposed to work, what context they apply in, where they don't. And so these rules that were just promulgated and made into effect in July, I believe go into great detail and they add chronic fatigue syndrome, they add COVID, they add a lot of invisible disabilities, which is great to see because that is a very underserved population, to your point. So, generally speaking, the law really defines disability in that kind of big umbrella term of an impairment that substantially limits a major life activity, and we're getting a lot more help from the Department of Health and Human Services in defining what all those elements are and providing like a ton of examples, which is great yeah.

Speaker 3:

Because then you can't argue that in court, or you can point to an actual regulation and get an answer.

Speaker 1:

One of the biggest takeaways from my conversation with Bryce was this Creating change isn't just a job for policymakers or advocates. It's something we all have to be part of, whether it's educating ourselves, standing up for our rights or simply listening to those who face different challenges. Every small action matters. Bryce's passion was contagious and I walked away with a renewed sense of conviction to step out of my bubble and push for change, not just for myself, but for others. Getting to know Chanda and Bryce has been a gift, not just because they're fellow Coloradans, but because they've expanded my perspective in ways I never anticipated.

Speaker 1:

I encourage you to revisit these episodes. Whether it's your first time listening or your fifth, I promise you'll walk away with fresh insights and a fire to make a difference. Thank you for joining me as we approach the final episodes of our EndoYear Reflection Series. Be sure to subscribe so you don't miss a moment. Remember knowledge isn't just power. It's the fuel that helps us advocate for the care we deserve and drive meaningful change. I'm grateful for everything I've learned this year, and I hope these episodes have helped you feel the same. Until next time, continue advocating for you and for those that you love.