[image quote]: "Seeing the broad range of experience within just the Ehlers-Danlos Syndrome community was really what drove me to start looking at these issues affecting all disabled people." - Rebecca, episode 06; EDS, POTS, MCAS patient

[image quote]: "Seeing the broad range of experience within just the Ehlers-Danlos Syndrome community was really what drove me to start looking at these issues affecting all disabled people." - Rebecca, episode 06; EDS, POTS, MCAS patient

06 Accessibility Means More Than Ramps - Part Two (episode page)
Description: Cara and Rebecca invite you to challenge some of what you think you know about disability, and the cultural messages we get about what a Disabled Person is. They discuss self advocacy, Rebecca's work toward better accessible transit options for Philadelphia and plans for a queer disability justice project, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end they talk about what they worry about, SSDI, and Imposter Syndrome.

[intro]
Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Thank you SO MUCH for listening. I’ve been really moved by the response so far. We got almost a thousand plays during our first week, and reached people all over the world. We got plays all over the US and Canada, Ecuador! Sweden! Morocco! India! New Zealand! And a bunch more too! If you’re from outside the US (or inside!) shoot me an email at insicknesspod@gmail.com or Tweet me @insicknesspod, I want to know where you are and what you’ve liked about the show so far! It’s so cool to know there are people listening all over the world. I was hoping the show would grow and spread, but it’s been incredible to see it happen so fast after such a long time of slowly working on this project. People have been telling me they're excited about the show, and I’m excited that you’re excited.

Today’s episode is part two of my conversation with Rebecca, who was the guest in episode “03 Accessibility Means More Than Ramps - Part One.” We had so much to talk about, I cut our conversation into two different episodes. In Part One, Rebecca talks about the ups and downs of EDS, their long and winding diagnostic process, working 10x as hard to be half as healthy as everyone else, and redefining their value while not being able to work a paying job. From that episode you can learn about some of the conditions that Rebecca and I both share, like Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome.

On today’s show, we invite you to challenge some of what you think you know about disability, and the cultural messages we get about what it means to be disabled. Rebecca talks about their work toward better accessible transit options for Philadelphia and plans to start a queer disability justice group, self advocacy, diversity of disability, and some of the social and economic issues that face the chronically ill and people with disabilities. At the end we talk about what we worry about, Social Security Disability, and Imposter Syndrome.

If this is the first time you’re listening, welcome. Last week we launched In Sickness + In Health with a five episode series honoring Dysautonomia Awareness Month. If you haven’t heard them, go back and take a listen! I plan to feature a wide variety of health experiences on the podcast, but started out with a series on one condition to illustrate how different each person’s experience can be, while also sharing so many of the same challenges. Dysautonomia is personal for me so I wanted to kick off the show with a series of interviews about something very close to my heart.

We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness, and we touch on some of them in this episode. Just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.

This podcast or any of its associated content is not a substitute for real medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. If you want to know why I started the show, and why I think these topics are so important, go back and listen to episode 0, “Welcome to In Sickness + In Health.”

Before we get into the interview, I want to introduce a couple terms that we’ll be talking about or referencing in our conversation. The language of this stuff can get messy, and people have very strong feelings about how we talk about this stuff. That just means we need to talk about it more. Maybe we’ll do a whole episode on the language of disability, and we can go through the different terms and preferred language of different groups.

We touch only briefly on a lot of different topics in this episode, and I’ve provided links in the show notes to find out more about them. One of those things is the Social Model of Disability, which is a model both Rebecca and I prefer to operate under:

[Rebecca explains Social Model of Disability]

Something we mention a few times in this episode is ableism, which is a form of discrimination or social prejudice against people with disabilities. Some people are scared of this word, some people are turned off by this word, and some people believe it’s something that simply doesn’t exist. For most people, it’s something that is very easy to miss. In our culture, people with disabilities are mostly invisible, and so discrimination in favor of able bodied people remains invisible as well. It’s not something most people engage in consciously, but it is largely guided by the messages we get (or don’t get) about The Disabled.

So in this episode, we invite you to join us as we talk about some of this stuff and question how the world tells us we should feel about ourselves as chronically ill and disabled people.

[Rebecca clip: spoonies should consider themselves disabled, consider that maybe being disabled isn’t a negative thing]

We only think it’s bad because we take those messages, internalize them, and they silently shape how we feel about disability. Sure, being disabled is challenging and probably not what we had planned, but many of us feel that with disability we’ve actually gained some things. Not everyone feels this way, and that’s okay too.

Regardless, it’s an added challenge to exist in an inaccessible world that only wants to pity us or find us inspirational, but there are wonderful and talented people who are defying that caricature every day, and many more who came before.

[interview]

[interjection]
These topics are very complicated, and we hope to cover them a lot more on the show. I’ll be talking to people of color with disabilities about this stuff more in depth. If you are a person of color with a disability and would want to be on the show, please contact me through the contact form on insicknesspod.com or tweet at me, I’d love to get your perspective on the podcast as well.

We all have plenty to worry about, and its not something that people feel like they can talk about very much, so its something I make sure ask everyone about.

[rest of interview]

[outro]
Well, my medical mysteries and general misfits, thanks for listening to In Sickness + In Health. Subscribe and stay tuned for everything we have to come, and check out our Dysautonomia Series from last week! Let us know what you’ve liked about the show so far. Please rate and review us on iTunes, which helps other people find the show, and tell your family, tell your friends, and tell your doctors!

 And don’t forget to be excellent to yourselves and each other.