Episode 43 - Filling the Gaps: Improving Birth Through Disability Education & Inclusive Care with Amy Rae

🐚Topics covered

• Amy’s personal journey and experiences.
• How Amy decided to become a birth worker/educator and the pivotal moments that shaped their path.
• Gaps within the birth system for 2SLGBTQAI+ and disabled individuals.
• How Amy addresses these gaps through her work.
• What working with Amy looks like in practice.
• Amy’s wisdom and advice for individuals seeking birth support and/or education.

About Amy

Amy Rae (They/Them) is a Queer, NonBinary, Polyamorous, Multiply-Disabled, Parent, and Chronically Ill Birth Worker. They live in a small town within Ontario, Canada.

They have a former background in Child and Youth Work, Early Childhood Education. Currently they work independently in education within the realm of sexual health and disability education and often within spaces where the intersection of birth work and those spaces co-exist. In their spare time, Amy is writing a poetry book called: Rolling Through It : Poems about laying in Hospital beds, falling in love, and doing both simultaneously

Where to find Amy

Instagram: https://www.instagram.com/rollingthroughwithamyrae/ 

More about Iris

💬Come say ‘Hi’ on Instagram https://www.instagram.com/cycleseeds/

🎓Check out our training

https://www.instagram.com/hormone.cycle.coach.training/

Chapters

• 0:00 Introduction to Amy Rae: Queer, Non-binary Birth Worker and Disability Educator
• 3:41 Amy's Personal Journey: Living with Multiple Disabilities
• 6:55 Pivotal Moments: Confronting Medical System Discrimination
• 12:38 Addressing Gaps in Healthcare: Teaching and Creating Change
• 16:42 Birth Work and Supporting Disabled Communities
• 19:38 Navigating Medical Systems: Practical Tips for Self-Advocacy
• 23:45 Challenges in Accessing Pregnancy and Birth Care
• 27:38 Finding Community and Support: Message of Hope
• 29:00 Connecting with Amy Rae: Online Resources and Social Media
• 31:37 Episode Wrap-up and Call to Action

Transcript

Iris Josephina: [00:00:00] Hey friends, welcome to another episode of the Planting Seeds podcast. Honestly, this episode just humbled me to my knees. Really, wow. I had the honor to sit down with Amy Ray, and Amy is a queer, non binary, polyamorous, multiply disabled parent and chronically ill birth worker. They live in a small town within Ontario in Canada, and they have a former background in child and youth work and early childhood education, and currently they work independently in education within the realm of sexual health and disability education, and often within spaces where the intersection of birth work and those spaces coexist.

In their spare time, Amy is writing a poetry book called Rolling Through It, poems about laying in hospital beds, falling in love, and doing both simultaneously. I [00:01:00] honestly can't wait to read that book. I'm so curious. And in this episode We sat down and Amy so generously shared their life journey, really, about living with chronic illness and disability, and they shared about how they decided to become an educator, and to illustrate that, they really went quite deep to share some pivotal moments in their life with us, and I'm really grateful, you know, that they brought that up.

And we just kind of went into unraveling what is missing in the medical system when it comes to 2SL, GBTQIA plus people and disabled folks. And it was just really a heartful conversation. And Amy so generously shared their wisdom [00:02:00] with us when it comes to how to really navigate the world. When you have a disability or chronic illness and she's so generously and vulnerably shared her knowledge and her wisdom and her tips for people who are maybe currently feeling alone or don't know where to start.

So, without further ado, please enjoy. This episode and let us know if you have any questions and please send it through to anybody. You may know that this could be helpful to enjoy listening. You're listening to the podcast of Iris Josefina. If you're passionate about exploring the menstrual cycle, cyclical living, body wisdom, personal growth, spirituality, and running a business in alignment with your natural cycles, you're in the right place.

I'm Iris. I'm an entrepreneur, functional hormone specialist, trainer, and coach, and I'm on a mission to share [00:03:00] insights, fun facts, and inspiration I discover along the way as I run my business and walk my own path on earth. Here, you'll hear my personal stories. Guest interviews and vulnerable shares from clients and students.

Most people know me from Instagram where you can find me under at Cycle Seeds, or they have been a coaching client or student in one of my courses. I'm so grateful you're here. Let's dive into today's episode.

Hi Amy. Welcome to the show.

Amy Rae: Thank you so much for having me here today. It's lovely to chat with you.

Iris Josephina: You're so welcome. So we have quite a lot of things to cover today. And to start, I wondered whether you can share a little bit more about your own journey and how that led to the work that you're currently doing.

Amy Rae: Yeah, so I am somebody that was born with multiple disabilities and [00:04:00] throughout my life, I knew I really wanted to Be a parent and a teacher and there were just so many nuances in both of those things put together that I experienced from a young age as I got older and came out as queer. And started to understand my body and my disabilities.

I felt very clear that I wanted to become a parent and I started exploring all of my different options. And once my partner and I started trying together a few years later, there were a lot of really uncomfortable, scary, ableist, traumatic [00:05:00] things that occur in the midst of these beautiful, powerful, magical moments.

And after the fact, after now I have my own child, all of that Pieced together this strong passion to pursue birth work and have a highlight of, um, disability education and disability justice in that work. And now I get to do that myself and, um, it's very fulfilling and powerful.

Iris Josephina: Thank you for sharing that.

And I'm so sorry. It has been so extremely challenging for you to just navigate the world and navigate the journey to become a parent. But I find it really beautiful that you. We're so changed by these experiences that you could take them [00:06:00] and alchemize them into something beautiful and offer the world the work that you're currently doing and I think it's important the work that you do.

Amy Rae: Thank you. Thank you so much for saying that. I agree wholeheartedly and There are some things that I wish I didn't have to show up to fight for. There are some things you wouldn't think that somebody might have to show up to fight for, but I think ultimately when that ends up. Landing on the people that are there trying to have support that they're not fully able to get that support that they need.

Iris Josephina: Yeah, I hear you. And in your journey, were there any pivotal moments, either positive or negative that really rooted you into your, into your purpose?

Amy Rae: Really? Yeah, I think for me, it was a lot of the medical. [00:07:00] The gaslighting and ableism that I experienced and at the time it felt very terrifying to me because I was unaware of a lot of the things that I know now and an instance where you see a difficulty when there's a power involved in and people aren't understanding.

Or fully educated on certain things, or perhaps they're bringing their personal bias and opinion into a space and that is then projecting real medical harm and trauma onto people and onto me in my experience. And the thing that sticks out the most, I would say, was. I went in for a medical procedure where I had to be put to sleep, but it was a very like standard procedure that people who do not have a list of multiple [00:08:00] disabilities go through as well.

It's just a routine kind of scope type thing, but I was being put to sleep and the anesthesiologist came in and looked at my hands, which are. noticeably long and thin because I have Marfan syndrome and she had read my chart so she just Walked in picked up my hand. I'm thinking maybe she's looking for veins or something and she says you have Marfan syndrome well, it's my professional opinion That everybody with Marfan syndrome should be sterilized.

Iris Josephina: Excuse me.

Amy Rae: Yeah, and I was 18

Iris Josephina: Wow

Amy Rae: and Then they put me to sleep and the thing that they don't know is that when I was 17, I was put through a a unjust medical termination, a forced medical termination of pregnancy because I [00:09:00] was convinced by my doctor that because I had Marfan syndrome and I was pregnant, that I would die and my baby would die.

And after that, I tried to end my life. And with that came another host of medical things that I was navigating. Which then led me into that room where I was being put to sleep for this procedure. And the last procedure that I was put to sleep for was my medical termination.

Iris Josephina: Wow. That must have been so scary for you.

Amy Rae: It was terrible. Terrible. Yeah. Terrible. And that's a very, very prime example of When somebody's bringing a personal opinion about something into a situation that they don't know everything about. Mm hmm. And that's not to say that I am a doctor and I can teach these doctors, like, how to do these things necessarily.

[00:10:00] But if they have somebody that's coming in and has prepared, like, information. And is willing to give a presentation and teach about different aspects, perhaps how we can personalize medical care when it's a highly medicalized situation for disabled people. And like, nobody's having those conversations.

I don't feel like, and if they are, they're not coming from disabled people. And that I think is kind of what pushed me toward wanting to do that teaching as. My job.

Iris Josephina: Yeah. Wow. So very needed. And, you know, when I hear your story, it's just like my eyes are just rolling to the back of my mind and I feel like sick to my stomach that this is something that people just go through.

And just today I had a conversation with someone like what actually happens in a medical [00:11:00] system. They get paid to help us. Like they literally get paid to serve you. They should be like on their knees serving you. Everyone who steps like one foot into a hospital should be, you know, served because they're paid to do that.

That's their job.

Amy Rae: And, you know, they choose to be in those positions as well. They choose to do that. They go through lengthy schooling to do those things. And there are some amazing doctors out there, some amazing medical providers. And it's never my job to be like, Oh, I strongly dislike medical providers and I'm here to prove them wrong.

That's not at all. I'm there because I care about the people that are being impacted by these things and how can we Make even the smallest bits of tangible changes or even just start a conversation about these things so that maybe they feel differently when they walk into that room.

Iris Josephina: And what do you [00:12:00] feel is missing the most within the system when you observe it and when you collect your own experiences, like you really have seen like both sides.

So what according to you is missing in the system and how do you seek to. Fill this gap with

Amy Rae: your

Iris Josephina: work.

Amy Rae: So a lot of the thing that I see missing is Well, of course a lot of medical systems. They're really overworked right now and so a lot of it is just like you get in and you get out and you get it done and I understand that and I've been in situations like that where like the medical aspect of it truly needed to be on the forefront and that's, that's okay and my work's not there because I'm not a medical professional.

My work is more so we gather around a table together, we sit together, and they share with me. I teach all around. I teach in [00:13:00] universities, I teach in hospitals. It's a number of different people, but we sit around the same table. And I just ask them, like, what do you feel is kind of the same question? And we kind of talk about those things, and it's not that I have all the answers, but I might have some access to resources that can then create some specific answers.

But on a broad scheme of things, I think It's just taking that moment to be able to sit down and like talk about those things because we're talking about systems that are like, we're watching them collapse basically before our eyes and we're seeing funding not being available for things. And I think that's why a lot of the time my work shines in universities and stuff like that and smaller scale settings, because that's where it feels like I personally.

Could be more useful, [00:14:00] but I do think just that initial connection to wanting to talk about these things and notice these things and change these things.

Iris Josephina: Yeah, I feel that the openness to even have the courage to actually sit down and have a conversation because I feel that everybody knows when you sit down to actually talk about these things, somebody is going to get triggered because there's, you know, there's always things that are.

Extremely unjust or not right, and we know it, we all know that, but as soon as we sit down to talk about it, we actually have to admit, and I think it's hard to have these conversations. And I think it's really beautiful that you just choose to do it. And also, it's such a big task for you as well, because you're also then holding the space to allow people to feel safe enough to ask these questions.

So it's such a huge thing that you're doing really. Wow.

Amy Rae: Thank you. [00:15:00] Yeah. And I'll be honest. I do teach at a lot of universities with students that are going on to be different forms of therapists, which I think is really great. But yeah, because they kind of notice these things too. And for me, I think that it was more difficult when I was a student.

More so supporting clients in person. And it was either that one, I couldn't access the spaces because like they weren't accessible to me, but two, that it was very difficult to be witnessing those things on like the regular, because this ended up being the primary group of clients that I was supporting.

Like when they heard about the work I was doing or through the grapevine, we ended up being connected and through various ways and that. I think was more difficult for me than [00:16:00] saying, I am going to kind of go on the ground and start from the bottom a little bit. And because it's just hard when you don't, like, you're not capable of change necessarily within those spaces that you're, you're in, in that setting.

And like, it's just, it's difficult to navigate. It was difficult emotionally. Physically.

Iris Josephina: I can imagine. So what does the, like the most ideal way to work with you look like? Like what do you love doing like the most in all of the types of work that you're currently doing or that you did?

Amy Rae: When I was doing in person work, I really loved doing like postpartum work with families, but I also really love teaching.

So I enjoy teaching classes in person, which could look like workshops with parents and [00:17:00] babies and talking about like making your home more like accessible for the two of you or your family or teaching professionals, which would be like at universities and smaller scale settings primarily.

Iris Josephina: Would you like to go a little bit more into, like, the birth work part that you did?

Because that's a little bit of, like, my, that's how my work all started. Like, I ended up, you know, anthropological research and ended up witnessing birth and was transformed for life. So that's really where. the root of my passion lies. What is, according to you, when, when we talk about care for pregnant people, and maybe even before that, preconception, because you've touched upon what you went through, what is, like, what part do you like the most working in, which phase?

Amy Rae: [00:18:00] Oh, that's so hard. All of them. I love all of them, honestly. Um, I would say maybe preconception and postpartum. I

Iris Josephina: love preconception too. Yeah. Have you supported other people who maybe went through something similar as you went through? Like, do you teach about that as well?

Amy Rae: Yeah, actually some of my first in person.

First clients actually had the same, either the same diagnoses or found out through me working with them that they had the same diagnoses. So they didn't know prior to us working together, but I do work with actually a significant amount of people. That have a shared diagnosis to me.

Iris Josephina: And how do you feel that we can collectively shift this crazy mindset of people in the [00:19:00] system that just come up with like personal projections onto people when it comes to something so personal, their fertility, it's like so private, so intimate, so sacred.

Amy Rae: It really is. And I think that when something hits you like that. You usually aren't in a place to be prepared for something like that. Really off kilter. But it impacts you emotionally and it's hard then to access like the logic part of your brain sometime. And I'm not saying for everybody, but for a lot of people and you're trusting these practitioners.

So, especially if you. already are aware that you have a disability or a chronic illness or just preexisting health condition, it can be hard to even find a doctor to see in general. So this might be the only [00:20:00] doctor you have access to. It's this thing that I always find really, really helpful and that clients of mine have found helpful.

Was finding a Facebook group of people that have the same like shared diagnosis and you don't even have to share like your own story But sometimes if you search it, you'll see it about that come up Yeah And you can read through and a lot of it is people that are in like similar situations and stuff And for a lot of people, they don't have access to that kind of community, or to be honest with you, some of us feel, and I say that because I felt this way until I was like 21, that we are the only ones.

We feel so isolated in our experience that it feels like there could be nobody else that gets that. But in a [00:21:00] lot of cases that I've seen, there usually is. And so. I find that a good spot, but just like doing your own research and keeping your own notes and also asking the doctor to put what they have said into writing.

Iris Josephina: Smart.

Amy Rae: Because One, you'll usually see them backpedal before your eyes, but two, it really holds them accountable to that statement and there are cases where something like that might be an appropriate conversation to have with somebody so that that individual can make an informed choice about things, but that's different, you know, yeah, so As much as it could be hard to think about having to do all of that.

And that's why I said the part in the beginning, the emotional is, it's hard [00:22:00] sometimes. It sucks to be like, now I have to keep notes and I have to ask him to keep notes. And I got to, you know, do all this other work and that's fair. You know, a lot of the time I would support people through situations like that.

Yeah, but that would be probably my. Advice to somebody that's kind of navigating that space on their own.

Iris Josephina: Yeah, I think it's brilliant advice and you're absolutely right in saying like, Oh my God, it's like so much work. It's like the work that we have to do to just receive something simple as care is incredible.

And in your situation, there is like a hundred more layers to it. That you have to pay attention to, you have to like, use your emotional abilities and do emotional labor to just simply. Get what you need. Really, it shouldn't be like [00:23:00] that. It's so heartbreaking, but then it's also Empowering to see that you're like, okay These are the things that we can do to just navigate Because we can't we can't change the system like from one day to another like we all know that So we have to find our ways and support each other to navigate it

Amy Rae: Yeah, absolutely.

And like I still do offer Like birth work support, I just do so in a virtual capacity now, because I feel like I can show up better for people that way, and just navigating in accessible spaces and such. But that is stuff that, like, I do help people with, and we kind of break down notes together and stuff like that.

Iris Josephina: Yeah, and especially for, you know, people navigating the system when they're pregnant, like, they're extra vulnerable. Um, birth is such a sensitive, life changing event [00:24:00] where people are really at their most vulnerable state ever.

Amy Rae: Yeah.

Iris Josephina: And I can imagine that. The system isn't always very helpful in that either.

Amy Rae: Yeah, that's very much the case. And then, of course, when you add on, like, people that are multi marginalized and the other factors that they have stacked against them, it can be a difficult system to navigate in it. A lot of the time is such a personal and emotional time, and the connecting time, and, and also sometimes not.

But Difficult to think about that extra layer.

Iris Josephina: Yeah. Are there actually, like, where you are also midwives who work with pregnant people?

Amy Rae: Yes, but not pregnant, disabled, or chronically ill. If you're disabled or chronically ill, you can't see a midwife. You have to see a medical practitioner, like an OBGYN, [00:25:00] basically, sometimes in like a, even a high risk clinic.

Your options become More limited.

Iris Josephina: It would be so beautiful if an OB GYN clinic would collaborate with midwives. Yeah. And that there would be like a continuity of care even if it were for a midwife to provide the more emotional support, but then having that knowledge. Yeah. Like I'm from the Netherlands and people are usually sent to midwives first.

Like it's, it's a very unique situation in in my country. Midwifery is like first line care is the first person that you see to like confirm your pregnancy and then they collaborate with OBGYN practices and I want that to ripple out.

Amy Rae: Yeah, like they collaborate here as well and they will come into a hospital if they need to.

There's also like birthing centers. You can do home birthing. [00:26:00] But again, like when you have health factors involved that kind of prevent that there is nobody that's in the hospitals providing emotional support on top of the physical and highly medicalized stuff that's happening around them. So that's honestly why I needed to be in those spaces.

Yeah. And just like I came up with a lot of different things. Ways to comfort those things during those moments.

Iris Josephina: Have you been, like, did you do birth attendance? Like would you go to, to births with clients?

Amy Rae: Yeah.

Iris Josephina: Yeah. So good. That's so exhausting. Yes. Working as a doula is extremely exhausting. .

Amy Rae: Yeah. Yeah. It, it, it definitely is.

I could only do it for about two years. Yeah. And it became a bit too hard. I loved it. A lot.

Iris Josephina: This kind of work just stays in your heart forever and your clients [00:27:00] just, like, stay so close in your heart when you've supported them in such a life changing moment.

Amy Rae: I know it's beautiful when you see the babies, like, being full on kids now and, like, it's cool.

It blows doula work for six years now, so.

Iris Josephina: Yeah, beautiful. And if you could share some wisdom with people who are like struggling finding access or struggling finding support, whether it is when it comes to their birth journey or just general medical care. What would you share with these people and maybe also at the end share where people can find you and your work?

Amy Rae: Yeah,

Iris Josephina: um,

Amy Rae: I would just say that I know and I feel that there are moments of intense isolation where you just feel they will last forever and That you are [00:28:00] totally alone in what you're experiencing. There are so many beautiful communities that exist and they hold each other through those spaces and a lot of them come in feeling the same way.

And I came in. feeling the same way. And so community is there, exists in the world, and your story as unique and isolating as it may feel is so important.

Iris Josephina: Thank you for sharing that. I feel that that is something that a lot of people deserve to hear. And what I really like about these times that we're alive in is that we have the internet and that it's so possible to meet people from all over the world who've had similar experiences.

Amy Rae: Yeah.

Iris Josephina: Yeah, it's important.

Amy Rae: It becomes a lot more accessible [00:29:00] to make community from a bed and things like that. It's a beautiful thing.

Iris Josephina: And where do you hang out online? Where can people find you?

Amy Rae: Yeah, so I have my, my website's down right now because I'm working on making it amazing.

Iris Josephina: Good for you.

Amy Rae: But currently my Instagram is rolling through with Amy Rae.

And I share a bit about my journey there, as well as like disability education and going to be diving into a lot more birth work stuff in that space. Like, so I'm

Iris Josephina: I'll make sure to share all of that in the show notes. And just for me to know, will your website have the same URL so that I can add it in the notes?

That's, yeah, that's the plan.

Amy Rae: I, I'm not sure if I have to switch. So it's all pulled down right now because I'm just starting from complete [00:30:00] scratch. So, okay.

Iris Josephina: Well, I hope you get a lot of time to rest up. And support your body and your mind.

Amy Rae: Thank you.

Iris Josephina: And take your work step by step. I think you're doing incredible work.

And I'm really grateful that you made the time to come on here and share your story. You're very vulnerable parts of your story. And share with people, yeah, what is important and also what is possible for them. I feel that's the most important thing that I've got from today is that people sometimes just need to hear what is possible and feel hopeful again in their situation and feel that they're not alone.

So thank you so much for providing that support so generously here.

Amy Rae: Thank you so much for. Giving me the space here to chat and share my story. And yeah, I just, I think a lot of people feel like if their story differs from what is such a typical, [00:31:00] you know, storyline of how we hear things should be, you know, you get married and buy a house and you have a baby, they have three babies and that's not the ever after.

And that's great. But for some people, if their story falls off of that path a little bit. It's still an amazing story. It's still real. It still deserves to be held and heard.

Iris Josephina: Yeah. It definitely is. Thank you so much. Really. Thank you. Really appreciate you.

Amy Rae: Yes, likewise. It was really nice to chat with you today.

Iris Josephina: Okay, this wraps up today's episode. Thank you so much for listening. Want to know more about me? The best way to reach me is via at CycleSeeds on Instagram. And if you heard something today and you think, oh my god, wow, I learned something new. Feel free to share the podcast on your social media and tag me, or leave a review of rating.

In this way, you help me reach more people like you. Thank you [00:32:00] so much.