Photo: Incluse This! Podcast Logo

Episode 5: Will the Cripples Save You?

Wednesday, February 10, 2021
GUEST: Charis Hill, Writer, Speaker, Model, Being Charis

Throughout the past year, the COVID-19 pandemic has been the impetus for bringing the term ableism to mainstream conversations. In this episode, Charis Hill and I discuss the messaging we've been confronted with, the actions we've witnessed, and the structures in-place that devalue and destroy disabled human lives.

QUICK LINKS

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

DOWNLOAD PDF »

OUR GUEST: Charis Hill

MUA Ashley Caudron

PHOTO: Glenn Jones/Ikona Studios

Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker, and model living with Axial Spondyloarthritis, Major Depressive Disorder, Anxiety, Post-Traumatic Stress Disorder, and Autism.

Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes, and research guidelines. They are consistently involved in national/international awareness and legislative advocacy efforts to improve spondylitis education, funding, and access to treatment. Charis serves on the Spondylitis Association of America advocacy committee and the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill.

Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and they're featured on covers of Féroce magazine, Arthritis Today, and Spondylitis Plus Magazine. Their bylines appear in HealthCentral, Healthline, Business Insider, AnkylosingSpondylitis.net, and This AS Life; including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’ story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary, Becoming Incurable.

TRANSCRIPT

Sarah Kirwan:
Hi, and welcome to Incluse This! I'm your host Sarah Kirwan, and this is a movement for disability equity. Today we're talking with Charis Hill, and we're talking about all the different ways the coronavirus has impacted and continues to impact the disability community. Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker and model living with axial spondyloarthritis, major depressive disorder, anxiety, post-traumatic stress disorder and autism.
Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes and research guidelines. They are consistently involved in national and international awareness and legislative advocacy efforts to improve spondylitis education, funding and access to treatment.

Sarah Kirwan:
Charis serves on the Spondylitis Association of America advocacy committee, the CreakyJoints Global Health Living Foundation, patient council, and the COVID-19 patient leadership council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill. Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week, and they're featured on covers of Feroce Magazine, Arthritis Today and Spondylitis Plus magazine. Their bi- lines appear in HealthCentral, Healthline, Business Insider, ankylosingspondylitis.net and This is AS Life. Including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis's story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary Becoming Incurable.

Sarah Kirwan:
Hi Charis, and welcome to Incluse This! I'm so excited to have you here today to talk with us about the coronavirus and how it has impacted the disability community and each one of us within that community. This is something that I've been researching and talking about for the last year. During my research I found your article, the cripples will save you on creakyjoints.org. After reading your article, I knew that I had found the guest for this episode. I just fell in love with the truths you were sharing and the candor with which you shared them. I then proceeded to stalk you with emails for a couple of weeks.

Charis Hill:
Oh, I'm used to that. Hi, thanks for having me. I do want to mention, you said Charis, which is one of multiple correct pronunciations of my name. So anybody listening, Sarah actually used the correct pronunciation. We can talk about that another time.

Sarah Kirwan:
Thank you. Perfect. When we had our first call, we talked about everything from COVID messaging and masks and medical rationing, and do not resuscitate orders, to COVID relief measures and vaccines.
Today we're going to cover all of these, which is quite a bit so I want to get started. The title of this podcast episode is will the cripples save you? Which is basically the same name as the title of your article? I switched around a few things and added a question mark. But the original title of your article is the cripples will save you, a critical coronavirus message from a disability activist. In the article you write, "Do you really want a bunch of cripples to save you again? My friend Don Gibson wrote this in a recent Facebook post about being a chronic illness and disabled activist in the age of the coronavirus outbreak or COVID-19. I can't stop thinking about her sentence, I can't.

Sarah Kirwan:
It grabbed me hard in the gut and wouldn't let go. Before I keep going, let me say the word cripple is an ableist slur. Many of us disabled activists choose to reclaim that word from time to time, to illustrate the labor we do as people who regularly fight society's barriers to our full participation in the world. I don't recommend using the word cripple if you aren't disabled." I love that last part that you put on there, I don't recommend using the word cripple if you aren't disabled. I have to tell you and our listeners, I remember the first time I heard this term used and I was playing wheelchair basketball.

Sarah Kirwan:
I was like, "Wait, you guys can't use that word, that sounds horrible. Seriously you definitely can't name your basketball team that." With their responses, I learned some really valuable disability lessons from these friends. Today I hope our listeners will learn some very valuable lessons about the incredible emotional and physical weight that disabled people have been carrying and continue to carry throughout this pandemic. As Jourdan Saunders and I discussed in our episode two weeks ago, words are powerful. Would you like to anything to that Charis?

Charis Hill:
I agree words are absolutely powerful. I just want to mention that when I wrote that piece that you read an excerpt from, I was just reeling from the let's see, from the vernacular that people were using to describe the pandemic. It's only going to affect old people or people with underlying conditions. That first part you read, every time that I hear it read again or I read through it again I'm just reminded of the anger that I felt in that moment, and the desire for people to just hear the disabled community. Which speaks to what you said, that incredible emotional and physical weight that we carry and continue to carry.

Sarah Kirwan:
I think that, I don't know if you know this, but one of the reasons why I started this podcast, one of the catalysts actually for starting this podcast was when I heard that phrase. We're going to talk about that a little bit more, but the fact that no one recognized that as an ableist term from the get-go was shocking to me. In May of last year, Rolling Stone published an article about a now former chairman of a planning commission in Antioch, California. His name is Ken Turnage. He was ousted after he publicly expressed his endorsement for culling the herd on a personal Facebook post. I'm just going to take a moment and read his obviously now deleted post for our listeners. This is it. "The world has been introduced to a new phrase, herd immunity, which is a good one. In my opinion, we need to adapt a herd mentality. A herd gathers, it ranks, it allows the sick, the old, the injured to meet its natural course in nature.

Sarah Kirwan:
Then we have our other sectors, such as our homeless and other people who just defile themselves by either choice or mental issues. This would run rampant through them, and yes, I am sorry, but this would fix what is a significant burden on our society and the resources that can be used." Wow. To see that in writing when we talk about human beings is just incredible to me, and I'm sure to you and to many others. On the flip side of that though, he's not the only one that's been pushing this survival of the fittest philosophy. The words, language and messaging we've been consistently fed throughout this pandemic are all saying the same things in a more subtle, less in your face way. I just feel like he's the one that came right out and said it and put it in writing really. What are your thoughts on that Charis?

Charis Hill:
I just, as you were reading through that my blood was boiling. I know that that thinking is out there and it's quite prevalent. It's just, like you said, it's not always right at the surface, people don't always just say it. But this pandemic has brought out a lot of that really harmful, internalized ableism, and really not even internalized but very upfront in your face sort of a blatant desire for people like me to die. I'll just say, we can talk about this more later, but I'll say for these people to think that way, paired with our knowledge that anyone at any time could become disabled is ironic and honestly a little funny to me.

Sarah Kirwan:
Oh, absolutely. The other thing that we're touching on in the next episode is, is COVID-19 a disability? We're not even looking at long haulers or talking about any of that and the messaging that's also impacting them throughout this. I think our first lesson today is going to be on COVID-19 messaging. Honestly, it's hard as we just discussed, it's hard to know where to even start with this one. When I heard the phrase I'm sick and tired of being sick and tired, I was like no shit. There's other phrases that we've heard, but let's start with the one that you just touched upon, which was I think the first phrase we all really heard that just was like oh my gosh, what a not subtle slap in the face for people with disabilities and the devaluing of their lives. That is "don't worry, COVID-19 will only seriously impact people over 65 or those with underlying health conditions." When I heard that the first time I was like, do they know that all of us with underlying health conditions can hear them, and we 100% know and understand what they're saying?

Sarah Kirwan:
Yes, we understand because we live with ableism each day. I think this pandemic has actually helped me to understand ableism better, but Ken Turnage didn't understand, and I'm sure that many others don't understand what's inherently wrong and ableist about this phrase along with the other words and language and messaging that's being used throughout this pandemic. In addition to that, I want to point out that our Asian American members of the disability community have had an added layer of being targeted and ostracized when our leadership continuously used the phrases kung flu, China virus, and a myriad of other racist slurs. As a well-known empowering and impactful disability advocate and activist, would you please help all of us understand what is inherently ableist and wrong with saying only those with underlying health conditions, along with the other accompanying words, language and messaging that you'd like to point out that's been used during this pandemic?

Charis Hill:
That sort of language it's obvious who that language is coming from. Obviously a high-risk or disabled person who was in a position of leadership and power would not say that. So it's clear systemically that our leadership is mostly non-disabled healthy people. What comes from that is messaging that is inherently ableist. The statement only those with underlying health conditions assumes that the only way to be a full, valid human is to be fully healthy, and if you aren't part of that community, it's okay if you just die off.

Charis Hill:
Because the only people who really matter are people who have an immune system that can fight off this virus, which caveat we know that that is not the case as we see formerly healthy people dying and having poor outcomes. It's this offshoot systemic ableism, it's like the racism conversation we've been having, where privilege just comes out. It's very obvious who has privilege by the words they say. Even if you were to just read the messaging, you would know who said it. Oh, this is a white person who said that, or oh this is someone who has no idea what it's like to live with disability or a health condition. You don't even have to look at the person to know what characteristics and what privilege they have.

Sarah Kirwan:
That's so true. I was looking at something or doing some research the other day, and they said that oppression is the opposite of privilege.

Charis Hill:
I have to think about that. I'm not sure I can comment on that, I need some time to think about that.

Sarah Kirwan:
I thought it was really interesting. Oppression is the opposite of privilege. We'll have to think about that. But I really think that we would be remiss if we didn't talk about ableist actions and behaviors that we've seen and personally witnessed throughout this pandemic. I think I just have to say masks. I don't know if I need to say much more. Non-disabled and people without underlying health conditions have cited the ADA to try and get out of wearing masks, which just makes me laugh. Now all of a sudden they want to use the ADA. In addition to that, anyone who needs to read lips when they talk to people can no longer do that because the majority of masks don't have clear windows that allow for that.

Sarah Kirwan:
Before we go on, can I just say that I'm seriously so tired of putting energy into talking about the ADA, because I don't think people understand that the ADA is the absolute bare minimum for inclusion equity. It's barely a standard and definitely not a gold standard. But now people who don't have disabilities want to use it for their own personal gain, because they want to get out of doing something. I know this could be an entire episode conversation, but we'll keep it short. Can you identify a few ways that the ADA has been manipulated for use by the non-disabled community during this pandemic? And can you share your thoughts or any personal experiences that you've had with that?

Charis Hill:
I just want to start by saying that people who have privilege, whether it's race privilege, gender privilege, white privilege, all those things, they are so desperate to feel oppressed in some way. The masks subject one example is that, where people who don't experience disability, which means they don't have a direct experience with ableism, I would say a caveat there that you can be a victim of ableism if you're not disabled.

Sarah Kirwan:
We may have to go back to that Charis.

Charis Hill:
Sure. People have such a desire to feel oppressed that they will grasp at straws, and that's a double entendre there talking about disability rights. But they will pull out anything to what's the word? To put themselves in that category. So when it's convenient to claim disability, i.e. wanting to not wear a mask just to go into a store and making a big deal out of it, and claiming disability is the reason that's okay.
But in the same breath hating disabled people very vocally and obviously, not liking that disabled people get a better parking spot than they do even though it's for a very valid reason. There's the desire to feel oppressed when you're really not oppressed, and to take advantage of work that disabled people did for decades just to get the ADA, which is over 30 years old now.

Charis Hill:
Like you said, it is the bare minimum. It needs a refresh. We need more. I feel like I'm just rambling now, but yeah we've seen a lot of ableism highlighted in a lot of manipulating the ADA for sure. When accessible things like telehealth, telework, things like that go away, we're going to see non-disabled people realize how accessibility helps everyone. I'm going to say that again. How accessibility helps everyone. As soon as these conveniences for non-disabled people disappear, they're going to realize oh, this is something that we benefited from, and perhaps realize these are things that would help disabled people all the time, not just during a pandemic. I hope that they'll realize that.

Sarah Kirwan:
Man that's exactly what I was just going to say. Will they realize it Charis? I want to touch on that slightly because my fear is that people won't recognize or realize that. I think it's important for us to recognize that what happened overnight with this pandemic, let's say telework, telehealth appointments for doctors and providers, physical therapy over Zoom, work from home opportunities. I actually made a reasonable accommodation request when I was a hospital administrator, and I was denied that request. It was for every other Friday off.

Sarah Kirwan:
Not only did they deny that they actually questioned why working more hours four days a week, and having that Friday off would help someone with fatigue. We look at these things that all of a sudden were available that disability advocates have been fighting for decades for. People have been denied accommodations, they haven't been able to, I don't even think half of the country knows what an accommodation is or how to eloquently or through a great communicative style get a good accommodation in place that's a win-win for both people. But anyway, now I'm off on the tangent. I want to-

Charis Hill:
I feel I could add to that though. It definitely needs unpacking a little. Just non-disabled people have definitely claimed disabled people's decades long work, that was suddenly implementable when a health issue impacted the entire population. Yeah, absolutely I'm worried that when these accessible measures go away if you will, once the pandemic is declared over, yeah absolutely it's going to be forgotten that these things [inaudible 00:22:53] disabled people all the time. I did tweet recently about how there are so many non-disabled people talking about disability issues during the pandemic without realizing that they are disability issues. I think that's a good way to end this segment honestly.

Sarah Kirwan:
Perfect. I love how you said people are desperate to feel oppressed in some way. You and I talked a little bit about oppression Olympics, which that was honestly I have to tell you the first time I had heard that, so I had to do a lot of research on oppression Olympics. But can you share a little bit oppression Olympics what that means?

Charis Hill:
Yeah it's like in the chronic disease community, for example, you have this hierarchical design model where some diseases are more well-known and therefore have more funding than other diseases that in a lot of ways impact lives equally, even if it's differently. So for example you have cancer, everyone knows cancer is bad. At the same time cancer has a ton of funding, and people know what treatments are there. A lot of people, and I'm guilty of this too, I have to be transparent in that. A lot of people with lesser known diseases that are also severe face this advocacy what's the word I want? Conundrum of like how do we advocate for awareness of our disease without making it an Olympic competition where we're comparing our disease to cancer or to another disease that's well-known and well funded? As a like, well cancer has this, but we have a really bad disease too and you need to hear us.

Charis Hill:
It's like hating another disease in order to elevate your own disease, where that's not necessary to raise awareness and I'm still learning this. I have to be honest with myself and with your listeners about that. That raising awareness about something, advocating for something, it's not necessary to do that while throwing other conditions or diseases that are marginalized under the bus. Another example is like the disability community versus black people, comparing ableist to racism. I've been educated, and it took me a while to hear that it wasn't appropriate to compare my form of oppression as someone who is a person of color, but I'm not black. I don't experience racism in the same way. It's not appropriate for me to compare ableism my experience to how racism is a form of oppression. They're separate things, one's not worse or better than the other. They're both valid, they're both different, and they both deserve platforms for people to learn about them. They intersect in a lot of ways so competition is not the best way to advocate.

Sarah Kirwan:
No, it's definitely not. In the last episode I talk with Tiffany Yu from Diversability, we talk about what disability community? We use that phrase so flippantly without really defining it for people or what it is or what that group looks like. I feel there's a lot of siloed groups within the disability community. I think that is also what brings about that competition among us. I think a lot of times the community is looked upon as being very disjointed. You have this group over here doing this work, and this group over there doing that work, and we're not working together. I love what you said about it doesn't have to be a competition. It doesn't have to be mine is worse than yours. It can be we both experience these things in a different way. How do we collaborate to bring what we do have as shared experiences to the table, so that we can move the disability rights movement forward?

Charis Hill:
I'll share a very brief, quick example of where that was successful. The Section 504 sitting was honestly the longest lasting US sitting for the justice issue, 26 days. Where people with all forms of disability worked together, decisions were made with everyone agreeing before moving forward with something. There wasn't one leader who decided things. I think for your listeners that that would be a good place for people to see a success story where there was no competition. There was no oppression Olympics. It was all forms of disability, blind people, deaf people, people using wheelchairs, people with other forms of mobility challenges and impairments, people with developmental disabilities, all of it. I encourage your listeners to read up about that for sure.

Sarah Kirwan:
I love that story too. I love how it is inherently also tethered to the civil rights movement at that time and Black Panthers were very supportive, brought meals.

Charis Hill:
Provided security.

Sarah Kirwan:
Yes. I Love that story. I do think that thank you for bringing that up, and I think our listeners could really learn a lot about what that does look like to cross-collaborate.

Charis Hill:
I don't think that collaborative spirit has gone away. I think we are just finding a new way to navigate it, but different technologies and things.

Sarah Kirwan:
I love that, just looks different. We hear the words COVID-19 does not discriminate. However, those of us who are really listening, we know that this is not the truth. Existing illnesses and black populations due to health disparities as a result of racism, have resulted in significantly higher infections. While people with disabilities and chronic illnesses make up over a quarter of the adult population in the United States, according to a report from the Centers for Diseases Control and Prevention, this population has faced incredible obstacles when trying to access care during the pandemic. Some have lost personal caregivers, others haven't had access to their medications.

Sarah Kirwan:
But we've all been in lockdown basically since the start of the pandemic to take care of our own health, because it's obvious that no one around us is going to do that. So let's get right to triage officers, care rationing policies and do not resuscitate orders. From the research I've done these policies violate several laws, including the ADA, the Rehabilitation Act and the Affordable Care Act. We also know that the disability paradox comes into play here. For our listeners that paradox is the discrepancy between how a provider would rate the quality of life of a disabled person, versus how that person would rate their own quality of life. Charis, would you please talk with us about the larger issue that's at play here, which is the complete devaluing of disabled human lives?

Charis Hill:
This is a really hard issue to think about and to talk about, especially because so many people, non- disabled people mostly aren't even aware of it. The value of life and what quality of life is comes from the medical model of disability, which it focuses on clinical numbers, blood results, mobility in a physical therapy sense. Where the expectation is to make a person as non-disabled as possible for them to be accepted as a full human. Coming into COVID, one example that I can share about that really explains this point well is, and I can't remember her name unfortunately. A woman in Oregon in 2020 who lived in a long-term group home care facility. She was non-speaking, I think she used a wheelchair to get around, had multiple forms of disability. I believe NPR is where I heard the story where her care providers believed that she had COVID. I don't believe she ever was tested or either she tested negative.

Charis Hill:
She was in a hospital being treated. She wasn't allowed to have care providers with her to help navigate her treatment. Doctors were deciding for her and for her care team whether it was worth it to fight for her life, to incubate her to do everything. Eventually it was found out that she had a long-term lung infection I believe that could have been easily treatable if doctors had investigated and actually cared about her life. But doctors chose to basically to let her die, because they didn't believe that her quality of life would be good. Even though she had expressed to her caregivers and care partners that she loved her life, she loved doing this thing and that thing, and that she did not want to die. I think that's just without even describing what that means under your question, it really addresses the point of non- disabled people who are taught in medical environments, whose life is valid and who is worth saving.

Charis Hill:
Especially in this pandemic we're seeing that, where disabled people are turned away from hospitals if hospitals are close to capacity, because they're less likely to survive or less likely to have what a medical doctor would say is good quality of life. It just really speaks to lack of disabled medical practitioners who think differently and make different decisions. It speaks to the lack of disabled people in positions of leadership outside that who create policy. There is a ton to unpack here, it could be a whole episode on itself, but I think I'll just leave it at that. That woman's story speaks for itself.

Sarah Kirwan:
I don't think there's much else to say beyond that. As you were sharing that story, and I read the story actually about this woman. Every time I hear it, it breaks my heart. Going back to what you said at the beginning, I don't honestly think that people know these laws exist in states across this country. That that is actually a medical power, legal power that's given to the providers to make those decisions. One of the things that with my company I really hope to help change is, providing that training for providers that you're treating a patient, a person. That you don't understand their quality of life, you don't understand their bodies. When I go into a doctor's appointment at this point, I don't know how you feel, I feel like a specimen. There are many times that I'm like, okay, what do I have to take off? I basically just get undressed. I'm like, yep here I am, poke me, prod me. We get used to that as patients.

Sarah Kirwan:
The education piece that we need to really put into our medical system, our healthcare system, is training providers that there is that medical model, but there's also a social model, identity. There's a different way to look at valuing life. I think that training is very necessary in this area. Also, having a seat at the table. Another thing that came from our original conversation, was that I understood that the CARES Act and other relief measures that have been implemented previously by the leadership in our country, haven't included people with disabilities receiving SSI and or SSDI. I hope I'm saying that correctly.

Sarah Kirwan:
Would you please share with us how this has impacted you personally? Because I've shared this with other people, and we can't obviously know how someone's going to respond. But the response that I got was, well, that was the same amount that they were making before the pandemic. My response to that was, well, people who were making a certain amount before the pandemic also got an extra $600 a week that put them way above what they would ever make in the year. I find this to be a very interesting conversation. Do you know more about that in the policy world, in activism? What are people saying?

Charis Hill:
It's a huge issue, and especially more recently as people are talking about raising the minimum wage. I guess I'll summarize a little, so the CARES Act, and then at the end of 2020 there was another a lot of people are calling the stimulus bill. Where a one-time payment has gone out. I think it was $1,200 was the first and then $600 was the second. So people receiving SSI I believe did not receive the one-time payments either one, but I could be wrong don't quote me on that.

Charis Hill:
But I do know that dependent adults and a lot of that is college age students, people in college who are still considered dependents, they didn't get the one-time check. Additionally, neither of those bills have included funding to support independent living for disabled people. Which has meant a lot of loss of support for people who live independently in their homes, for people who live in independent living sort of group home environments and things. But further to your point about unemployment versus the one- time check. For me personally, my monthly income is around $1,000 on SSDI. That is not a lot, I live in forced poverty.

Sarah Kirwan:
You get $1,000 per month on SSDI, that is unlivable.

Charis Hill:
I receive about $1,000 a month which is around $12,000 a year. I don't know who your listeners are, but imagine what your annual income is and maybe you're somebody who's disabled and you live in poverty just like me. But perhaps some of your listeners are people who work for a living, have incomes that are twice, three times or four times or even five times more than what I receive. Can you imagine living on that? To add onto that unemployment boosts were part of the CARES Act, which was $600 a week on top of the state provided unemployment. I have dreams about that kind of money. I can imagine what that would do for my life.

Charis Hill:
This interesting comparison between disabled people who rely on SSDI, and I'll talk about SSDI because that's what I receive, received just one-time payment of $1,200. That they are expected to stretch out over however many months, at this point it's almost a year. While people who work for a living and then suddenly become unemployed due to a pandemic are receiving three times sometimes four times my monthly income all of a sudden, even though I'm unemployed all of the time. I can rant all day about this, all day about being someone living in forced poverty. My cost of living has risen due to the pandemic because of food delivery costs, there's just a myriad of ways, and yet my cost of living the increase has not been supported by the government. I can rant all day about that, but I'll just stop there.

Sarah Kirwan:
Let me ask you this, is anyone talking about this in the policy world? Are any of our leadership members talking about this?

Charis Hill:
I haven't seen any evidence of it myself regarding increasing stimulus money for people who live in poverty due to SSI and SSDI. I see a lot of advocacy within the disabled community about it, but I haven't personally seen any lawmakers respond directly to that.

Sarah Kirwan:
Do you think people have asked them that? Or do you think that...

Charis Hill:
Oh yeah I have. I know that if I have done that, then of course many others have. You have people who were on the Obama administration staff talking about it on Twitter. Even though there is talk happening it's just not public.

Sarah Kirwan:
That's the sad part. That goes back to a conversation that we had an episode two, excuse me, with Leroy Moore. It was titled inclusion is bullshit. We talked about the damage it does when the conversations and the signing of legislation or policies are done behind doors, behind closed doors. When the issue isn't brought to the attention of the public.

Charis Hill:
That goes to your point about having people at the table. If policy is happening by only the people who hold office, and if all of the people who hold office are 90% non-disabled then what kind of policies do you think you're going to get out of that? It's going to be policy that benefits whoever's in the room and who looks like them.

Sarah Kirwan:
Exactly. Another thing that I wanted to talk about that has become more of a prevalent conversation right now is the vaccine rollout. I'm hearing from friends, I'm researching I know what tier we're in, but there are a lot of other tiers ahead of us. Do you have insights on the vaccine rollout? We can talk about people at the table, which they're not, and that's something that we need to make sure that we have a seat at the table to address the next pandemic in a very disability inclusive fashion. But at this point, what are your thoughts on the vaccine rollout? How is it impacting you personally right now? What do you... Well that's it. Have you had personal experience?

Charis Hill:
Just like the mask conversation, which I'll briefly follow my tangent regarding masks. Masks are an accessibility aid, and a lot of non-disabled people who are resistant to wearing them I think on the subconscious level are afraid of masks because it allows them to do more in life, and that's literally what accessibility tools do. Just like prescription eyeglasses, if you didn't have them you wouldn't be able to do a lot. If we didn't have masks we wouldn't be able to do a lot right now. But I say that to compare that to the vaccines, the vaccines are an accessibility aid as well. They allow people to return to public life more than currently. They allow for safer interaction, without fearing for health, fearing disability.
The CDC in their vaccine rollout guidelines, people over the age of 65 and people under the age of 65 who have high-risk conditions are in phase 1C, that's the CDC guidelines which states do not have to follow.

Charis Hill:
Each state then I guess has created their own process for that, whether the governor decides themselves or has created a vaccine advisory council, which is the case in California. You and I both live in California and so I'll focus on California. The California Vaccine Advisory Council is made up of representatives from dozens of statewide organizations that are considered stakeholders. I looked at the list of those organizations recently, and actually there are like half a dozen health related or disability related organizations that have a representative. I do know someone who is on that council, and he and I are regularly in touch. I don't know that any of those representatives identify as disabled, but we do have a place at the table. That said, we haven't been heard because of conversations I've had in private about this. Those committee meetings are livestreamed or recorded and then broadcasted later. So you actually can see what happens in those meetings.

Charis Hill:
What's important to me is that the CDC recommended that people over 65 and people with high-risk medical conditions are in the same phase. But in California those two groups have been separated, where high-risk people under the age of 65, which is essentially disabled people under the age of 65, are the last group in the first phase of vaccine distribution. I'm going to get really detailed here follow a tangent, but there's a lot of evidence coming out that new strains of COVID-19 are being discovered to have probably come from immunocompromised people. Where the virus, because they're immunocompromised their immune system can't fight the virus as well. The virus stays in their system longer and has more time to replicate and create a new version of itself.

Charis Hill:
There's outcoming evidence that these new strains are because immunocompromised people have gotten sick and then the virus has replicated into a different version of itself, and then gotten back into the general population. Which you would think would a really useful argument for why people under the age of 65 with high-risk medical conditions should be vaccinated as soon as possible, so that the virus isn't in our system long enough to create these new highly contagious strains. That's a really long tangent to answer your question of like with vaccine distribution, why are we not elevating the vital needs for all disabled people no matter their age to be vaccinated? I'll follow another brief tangent.
Recently on Twitter I read about someone breaking down the fact that caregivers are currently allowed to be vaccinated in California, but the people that they are caring for are not.

Charis Hill:
This just opens up a huge can of worms for me. If you think about the statistics about caregiver abuse, elder abuse, all of these things where it's been reported that disabled people are way, way disproportionately impacted by domestic abuse from family members, caregivers, whatnot. You extract that thought into the fact that during vaccine distribution only the caregivers are being vaccinated, that opens up so much potential harm to disabled people who aren't allowed to be vaccinated yet. Imagine a caregiver going out to hang out with friends because they've been vaccinated. Well, they come home and they still are able to pass on that virus to the disabled or the immunocompromised person who can't fight the virus as well. That's just worlds of not good. I've talked about this for so long at this point, for your podcast this could be multiple episodes of its own, but I think I'll stop there because my blood's boiling right now, so I'll just stop there.

Sarah Kirwan:
We could have a whole episode on that. One of my fears, one of my greatest fears that also drives me in this space is my fear of my MS getting to a point where I am debilitated and have a caregiver, and I can't vocalize my needs or take care of myself, I'm so reliant on that person. That fear stems exactly from what you were just talking about. It scares the shit out of me. It definitely could be its own whole, whole episode. But let's not go down that path and we'll go back to the work that you do in this space. I have read a lot of your work, and it is empowering. I've read a lot of messages from your followers who are so comforted, and it's just very beautiful. I was reading through your blog and I came across a message from one of your readers and she wrote, "Charis, thank you for being a voice. Many have no idea what AS is and how it affects a person. I was diagnosed at 19, and doctors thought that it was all in my head. I found it very frustrating as well as unfair.

Sarah Kirwan:
I played sports growing up and I was very athletic and active. To have been diagnosed with this freaked me out, but each day is a new day and I will not let this overcome me. In the last two months, my seven- year-old son was also diagnosed with this. It's been very hard for him recently, and we are trying to find ways for him to understand while staying strong. It breaks my heart. Once again, I want to thank you for your voice and words of encouragement." That's pretty amazing. I feel like in this space of activism and advocacy that we sometimes stare at this gigantic goal of change and impact that we want to make. It feels large and it doesn't feel like we can accomplish that. We forget that along the way, these "smaller" individual one-on-one interactions that we have with people they combine to help us reach that goal, that goal that we're of inclusion and equity, and they combine to be the most meaningful.

Sarah Kirwan:
That's what I really love about the work that you do, is bringing these people together to have these conversations about AS and their own personal experiences with that. In this space I feel like there's an extreme amount of passion, emotion, anger, which really hides or masks a sadness. I think not being seen and not being heard and just feeling so marginalized is just so detrimental to all of us. We put all this effort and passion and emotion into it, and then we burn out sometimes. That burnout is extremely prevalent in this area of disability activism. How do you stay passionate, energetic and really in that space to continue doing this work? What do you do when you feel that burnout?

Charis Hill:
Living as a disabled person, and especially for me as someone with multiple chronic conditions, including both physical and mental illnesses, burnout is just a natural thing that a lot of us go through. Then for those of us who on top of that choose to become advocates and remain advocates and activists. For me it wasn't a choice it just happened, and I just kept saying yes, and built up to where I am today. Burnout is sort of a permanent condition for me, and especially in this pandemic where I was tired before the pandemic just trying to survive plus being an advocate. Then the pandemic happened, and all of these new issues suddenly presented themselves. I'm tired, I'm very tired. What I usually say to people who ask like, "What is it like to be who you are?" I'll say like, "Who I am is a poor celebrity." I'm an impoverished celebrity who can't buy a mansion so I have privacy away from people who are like, "Oh, that's a celebrity, I have to go knock on the door and say hi."

Charis Hill:
Being someone whose life a lot of my life is lived in the public eye is really taxing. Even my private personal Facebook page is something that I have my friends and family, and then I have my fans who see everything I post. Every outward piece of me is digested with the lens of this is a celebrity, and I'm going to think about and judge everything they do and say. Just living in that reality is really taxing. But at the same time it's really rewarding, because I can see the changes that I influence directly in my fans and in people who message me privately to say exactly what you read before from someone who read my blog. Thank you for being a voice. Thank you for saying what's on my mind, but I just couldn't put into words. Thank you for making me feel less alone.

Charis Hill:
Just all of these things where I'm not doing this for myself and I never was. But I can't stop, if I stopped I really wouldn't know who I am, because all of me is in this work. I'm a brand, I tell people that I'm a brand. I have formed my whole life around this brand as an advocate, as a spokesperson. If I stopped doing that suddenly, I wouldn't know who I am anymore. In a way it's like I choose to continue doing this, but I'm also stuck doing it. Burnout is just a constant in my life. That said I love to garden and I have four cats. There are small breaks in the middle of all that work.

Sarah Kirwan:
Wow, I love all of that what you just said. It's interesting for me too because, so I got into this space really because I was just always advocating for myself for my MS. I had an inner ear disorder, a very rare disease that took nine years for them to diagnose. I ended up diagnosing myself and then begging UCLA neurosurgery who were amazing and diagnosed me. I think that we go from micro, how it affects us personally, to macro thinking instantly. I believe those of us in this space do, that's how we got into the space too, is that this advocacy work for ourselves and then we start thinking about the bigger picture, who else would benefit if they knew about this? Or who else could I help?

Sarah Kirwan:
But what I wanted to address is what you said about I'm a brand, I wouldn't know who I am. It's so interesting me, because one of the reasons I'm doing this is because I couldn't not talk about my disabilities. It just didn't feel authentic to me to try and live in a space where I couldn't share this very, very important part of my identity, and who I am and how I maneuver in the world. Thinking about going from wanting to make that decision to get into it, and then becoming this brand where you feel almost stuck and can't get out of it. I never even thought about that, you just blew my mind.

Charis Hill:
I don't know that I ever even chose to get into it, I kind of fell into it on accident and honestly through a very selfish way. When I was diagnosed it's been nearly 10 years ago now with my physical condition, ankylosing spondylitis, or now it's more commonly we're shifting into calling it axial spondyloarthritis. But people use both terms. I'm a former college athlete, I ran marathons. I did really physical work, and suddenly this chronic disease took me out, I was like flat. I was screaming into the void about what I was going through, and I saw this opportunity to fundraise and I was like well I'm a good fundraiser, I'm going to fundraise and it'll make me feel more in control of my situation.

Charis Hill:
But the way I got into this was really selfish. I wanted people to hear what I was going through. It wasn't fair, my life was just suddenly something I was no longer in control of. I realized that in sharing my story I was actually giving other people voice, and sharing other people's stories. I quickly learned that if I was going through something, chances were super high that dozens or hundreds or thousands and millions of other people were going through the exact same thing. That if I added my voice to the mix that awareness could grow and it would make it easier for other people coming along behind me.

Sarah Kirwan:
I love that too. Let's say that somebody doesn't have a platform, or they don't have a show, maybe they don't live with a disability. Maybe they don't identify as having a disability. How can our listeners become disability activists in their own lives, whether they're living with a disability or not?

Charis Hill:
There's no right or wrong way to be an advocate, no matter what community you're talking about. But I do urge people to learn about the power of sharing their own stories. It's not so much about sharing statistics. Many people really can't picture a statistic. If I say 3.2 million Americans live with spondyloarthritis, you're going to be like, oh yeah, well that's a number and who cares? But if I tell you what it's like from the time I wake up in the morning, how long it took for me to get diagnosed, what I go through after a day of doing a big thing, you're going to hear me and remember my story. I encourage people to get comfortable telling their own stories, and then finding out where to plug those stories into things they're already passionate about. I'm a model and so I don't separate my being disabled from my modeling, I make it fully a part of everything I do. That's my advice for people who are disabled or live with chronic diseases.

Charis Hill:
For people who are non-disabled or are temporarily healthy, I always encourage them to learn and listen from us. Don't give unsolicited advice. That's the biggest taboo within the chronic disease and disability community, is to give unsolicited advice. Substitute in that place, substitute asking questions and learning directly from those impacted. Then using your place as a person in health or non-disabled privileged to speak up when you see something going on in your own life that is discriminatory or oppressive to disabled people. But when a disabled person is there, we lead the way so listen to us. But at the same time, don't expect us to be the token disabled person, and use all our energy to do the work that non-disabled people need to do to learn our history, our justice movement, our culture. We are not here to fix your ableism, we're here to tell you our story and to become leaders, but you also have to do work to dismantle your own ableism, that's not our job.

Sarah Kirwan:
Yes, we are not here to fix your ableism. I love that. I really like the point that you made about not telling someone with a chronic illness or disease, and you may have said disability in there, not telling them how they should address or I guess, how do I want to say this? How they should live their life with that disease or disability. I can't tell you how many magazine articles I get; people want to be helpful, that's why they're sending that information. But it would be really nice if somebody would just ask, "Hey, what have you been doing with your MS or your AS? Or how have you been working through it?" As opposed to assuming that I would want to learn this or I haven't already.

Charis Hill:
I think the giving advice, unsolicited advice comes from a place of wanting to help. But honestly it's really selfish, because let's think about okay you're giving someone a birthday gift. If you're a really good gift giver, you're going to listen to that person, learn what they like, and get them something that they've already asked for, whether it's a specific ask or you've learned from what they already like to do. But if you're a bad gift giver, and I feel like I'm going to hurt a lot of people's feelings when I say this, but it's true. If you're a bad gift giver, you're going to give somebody something that you think they should like, that is going to make you feel good about what you did for that person. That is exactly what unsolicited medical, excuse me, unsolicited medical advice does. It reflects your desire to feel like you're doing something for that person, even if it's something that they've made clear they're not a fan of. I don't even remember what your question was, but that is what came to mind.

Sarah Kirwan:
Thank you so much for being on the show today Charis. I am so happy we could have this conversation, and talk about some of these uncomfortable topics, and start understanding the ableism that's happening all around us throughout this pandemic. I really hope it will help our listeners to identify more ableist messaging, and to not use that in their daily language and interactions. If you'd like to learn more about the work Charis is doing in the disability activism space, please visit their website at http://www.beingcharis.com. I know you're active across many different sites, so where else can our listeners find and follow you the work that you're doing Charis?

Charis Hill:
The best place I would say is Twitter, I'm very active on Twitter these days. My handle is BeingCharisBlog.

Sarah Kirwan:
Well, I really look forward to continuing our conversations, and thank you once again for being on the show today Charis.

Charis Hill:
Thanks for having me Sarah.

Sarah Kirwan:
Once again to our listeners, thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC. Eye Level is a California based woman and disability owned small business, committed to having critical conversations at Eye Level that are necessary to move disability to the forefront of the greater diversity conversation. If you'd like to learn more about the work we're doing, please visit the website at http://www.eyelevel.works. That's E-Y-E-L-E-V-E-L.W-O-R-K-S. You can also email me directly with any podcast episode ideas or questions and comments at Sarah @eyelevel.works. Remember to put your disability lens on when you look at the world, and tune in next week for another stimulating conversation on Incluse This! The podcast that's really a movement. Take care and be well.

Leave a Reply