364 - Polyamory and Disability

Full transcript available

What’s a disability?

When we use the term “disability” throughout this episode we specifically are talking about “a person with an injury, illness or congenital condition that causes a loss or difference of physiological or psychological function who experiences the loss or limitation of opportunities to take part in society on an equal level with others due to social and environmental barriers.”

Another term used throughout this episode is ableism, defined by disability justice activist and attorney Talila Lewis as “a system that places values on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion, and or their ability to satisfactorily [re]produce, excel, and “behave”. You do not have to be disabled to experience ableism.”

Disability and polyamory

Even with efforts to be more inclusive in most recent years, people with disabilities often feel as though they are less welcome in the polyamorous community. Some reasons behind this seem to be:

• Lack of representation/discourse:

  • Very little visual representation of the disabled community exists.

  • Not all disabilities are visible, which makes it complicated.

• Inaccessibility to community spaces:

  • Polyam people with disabilities are often forced to choose between accessibility and community. 

  • Prioritizing accessibility in community spaces can look different, and the goal should always be to make sure that the people who want to be in the space are able to be there.

  • For in-person events, accessibility can look like wheelchair-accessible venues (including bathrooms), and appropriate lighting so folks who read lips or communicate with ASL can see.

  • For online events, it can look like seizure or photo-sensitive warnings on videos, ensuring videos have captions, writing image descriptions for pictures, and educating yourself on ableist slurs.

Challenges

First, some terms explained:

Interabled relationship 

• A relationship between a non-disabled person and a person with a disability. 

Intra-abled relationship 

• A relationship between people with the same ability status. This can be a relationship between two or more disabled people or two or more non-disabled people. 

Some of the main challenges reported in the disabled community when it comes to dating, especially in the context of polyamory, are:

• Finding partners.

  • “Finding partners who are willing to make the necessary adjustments to make a relationship accessible is a hurdle and opportunity that disabled people face.” (Here Are 7 Reasons Why Polyamory Is More Difficult When You’re Disabled) - Katie Tastrom.

  • Ableism makes it more difficult to find partners. People don’t always want to date people with disabilities or some people fetishize those with disabilities, which isn’t good either.

• Being in one or more relationships when you have very limited or fluctuating energy is hard.

• Sex: 

  • Attitudes about sex and disability.

  • Access needs.

• FOMO and jealousy.

• Trauma plays a big role in relationships, and the rates of trauma and abuse are much higher among people with disabilities.

Benefits

Some possible benefits of being polyamorous when you are disabled include:

• Flexibility to build relationships that work for you and your needs.

• A wider pool of support and there isn't an assumption about one person providing particular support.

• Things that are not possible for [Em] because of [their] disability, like having kids or being a primary caretaker, can be reimagined by queering the idea of family and getting to show up for the kids around [them].

• Ability to have close relationships with other people with physical disabilities and not stress about things you can’t do because of your disability.

• Usually a better understanding of power and privilege that people hold in polyamory, specifically Relationship Anarchy.

Being a better ally

For non-disabled people, being an ally can look like:

• Making your life together accessible.

• Doing your own research. 

• Challenging other people’s ableism.

• Not making assumptions about their independence—or that interdependence is a bad thing.

For disabled folks, it can look like:

• Advocating for your wants and needs. 

• Addressing your internalized ableism and realizing that you deserve happy, healthy, and supportive relationships.

Some action steps we can all take away from this episode are:

• Think/talk about the ways that disability and accessibility show up in your relationships: 

  • Does ableism show up in your relationships and if it does how do you want to address that? 

  • Are there areas where you want to do things differently or better? 

• Diversify your feed.

Find more about Em on Instagram at @QueeringPolyamory, or check out Ryan Manson, Andrew Gurza, and Nina_Tame as some good people to follow to stay informed.

Transcript

This document may contain small transcription errors. If you find one please let us know at info@multiamory.com and we will fix it ASAP.

Jase: On this episode of the Multiamory Podcast, we are talking about relationships and disability. In this episode, we're going to be covering things like, what does it actually mean to have a disability? What does that have to do with dating? We're also going to cover how to address some ableism in the dating world, especially in the polyamorous community and in our own individual relationships.

To help us out with this episode, we have a guest co-host today, which is Em Mais one of our researchers. They picked out this topic and helped us put this episode together and are also here to help us cover it. Em, thank you so much. Tell us a little bit about the topic.

Em Mais: Thank you. I'm really excited to cover a little bit about relationships and disability and what disability looks like in the context of polyamorous community and polyamorous relationships. I have been ethically non-monogamous for almost a decade now. I've spent a lot of that time as a disabled person looking for resources and information that touch on some of the specifics of what it looks like to date as a disabled person in the polyamorous community.

Have come up time and time again with really no resources that covered the sorts of things that I wanted to find or get answers to. I'm hoping to cover some of those topics today and hopefully get some answers out to other folks in community looking for more information on this topic.

Jase: Excellent.

Dedeker: We're going to dive into a lot of good information. We have to start out with some caveats. First, I'll just lay the scene to say that all four of us who are here recording today, we have our own individual experiences, our own identity that influence the way that we approach this topic. We all have our own individual experiences or have experiences with partners, family members, friends with temporary disabilities, permanent disabilities, visible or invisible disabilities.

All that to say that none of us are claiming to be able to speak to the experience of all people with disabilities. For some context, about one in four adults in the US have some form of disability, any group that's that large is, of course, going to have a huge range of thoughts, opinions, experiences. We've tried our best to gather input and thoughts from a wide range of sources, but of course, the episode today is not going to capture everything.

A lot of what we talk about today is going to be looking specifically through the polyamorous lens, but much of this information can apply to many, many different types of relationship styles.

Emily: Let's start off with some definitions and what we mean when we say the word disability because there's a lot of different definitions of what it means to have a disability. For the purposes of today's episode, when we use the word disability, we mean and quote, this is a quote from disstudies101.com. We mean "A person with an injury, illness or congenital condition that causes a loss or difference of physiological or psychological function who experiences the loss or limitation of opportunities to take part in society on an equal level with others due to social and environmental barriers." That's a lot. That's a big definition right there.

One type of barrier is ableism, which is something we're going to discuss quite a bit today which Disability Justice Activist and Attorney Talila Lewis defines as, "A system that places values on people's bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-blackness, eugenics, misogyny, colonialism, imperialism, and capitalism.

This form of systemic oppression leads to people in society determining who is valuable and worthy based on a person's language, appearance, religion, and or their ability to satisfactorily reproduce, excel, and behave. You do not have to be disabled to experience ableism."

Dedeker: Later on in the episode, we'll be getting into more of real life examples of what ableism actually looks like if you're not entirely sure.

Jase: Before we get more into this, one last thing that we wanted to cover about language here is just some of the different terms to use and what those might mean.

Em Mais: One of the first notes that we had is person-first versus identity-first language. For folks who aren't familiar with the difference between these two things, person-first language would be something like, I'm a person with a disability versus identity-first language, which would be something like, I'm a disabled person. There's a lot of debate within the disability community in terms of which term is the correct or most acceptable term to use.

Throughout this episode, we'll use a mix of both person-first and identity-first language, depending on which source we're talking about, what the author of the source uses, or what just comes out naturally. An amazing post about this topic is by Sophie J. Butler on Instagram, where they go into depth talking about the pros and cons of both of these word choices. Another note around language that we wanted to make sure folks were aware of is some terms to avoid.

Some common terms that get used that are best to be avoided would be things like special needs, differently-abled, handicapped, cripple, or wheelchair-bound. While all these terms are used in various resources, they're all outdated and harmful to the community. That being said, we don't ever want to police the language that people use to talk about themselves. If a person with a disability uses a term like special needs or cripple, that is their choice to make and it is best to always respect the language that people use to talk about themselves and their experiences

Dedeker: Something I do want to comment on that I've seen from some people who either don't have a direct experience with disability or don't have any disabled friends or things like that, that there are more abled people who think the word disabled is a dirty word sometimes, but also don't have any good alternatives as well. I think that that's a main takeaway here, is that just saying the word disability is not inherently a bad word.

Em Mais: There's a really amazing movement that started on, I believe Twitter with a hashtag disability is not a dirty word. It has a lot of really amazing resources in terms of how to get comfortable using the word disability, why the word disability is important in terms of the way that it gives people disabilities protection under legislation like the 504 and ADA, and why it's really important that we use that word rather than words like special needs are different.

Dedeker: Got you.

Jase: It's just so interesting too, and I guess the reason why I bring this up is because if you're someone out there who has used some of those terms, we were at one point taught those are the nice terms to use. It's like, you're not a bad person for using them, but now's the time to stop and use disabled instead, because like, Em said, outdated.

Emily: Language always evolves.

Jase: Yes and have turned out to be not helpful, but actually harmful, so we want to stay away from those.

Dedeker: We're going to be looking at what this all looks like in the context of polyamory. We're going to be talking about special considerations. We're going to be looking at the ways that polyamory and moving in the polyamorous community can be more difficult for people who are disabled as well as ways that the polyamorous community sometimes make a little bit easier for disabled people.

Over the last decade, a hot topic of conversation has been around the presence or absence of diversity and inclusion in the polyamorous community at large, as well as small micro communities under that umbrella. There has been a lot of really amazing work to build more inclusive communities, but people with disabilities still often feel like they're not welcome. That's regardless of whether or not that's the intention.

We have this article here titled, Here are Seven Reasons Why Polyamory is More Difficult When You're Disabled. Written by Katie Tastrom. Katie says, "Mainstream polyamory generally presumes ableness and neuro typicality." They go on to explain that there are no guidelines or examples of how to navigate challenges like maintaining multiple partnerships when you have limited energy or the difficulty of getting new partners up to speed on your access needs.

Em Mais: Two of the most common reasons I've seen folks with disabilities give for why they don't feel included or represented in the polyamorous community are just the sheer lack of representation and inaccessibility of community space. As I've mentioned, I've been polyamorous for about a decade, and I can count on my fingers, how many influencers, podcasts, hosts, and community organizers in the polyamorous community I've met who are open about having a disability.

This gets really complicated in terms of invisible disabilities or folks choosing to not disclose disability because of things like desirability politics or just the ways that it can make it more challenging to navigate a space. The lack having representation, folks that you can look up to and see as an example for yourself in terms of polyamory feeling and being possible for people with disabilities can make it feel like the community is not a space where you're welcome or not something possible for you.

The other big thing that I hear from a lot of folks is just the sheer inaccessibility of community spaces, making it very clear who is and isn't welcome in these spaces. Things like meetups or munches happening in buildings that aren't ADA compliant, organizers not being willing to meet folks' access needs, or acting overly dramatic or inconvenienced when basic access needs like, "Hey, can you get a ramp?" Just feel impossible to get met and makes it very clear who is and isn't welcome in these types of spaces.

Jase: This is something that when we went on one of our tours in the past, that someone brought up to us about one of our venues and it was honestly something that hadn't even occurred to us at that point. I think that's why this is so valuable to bring up and let people know. Because it's like, "Oh gosh, we would've looked for that if we'd thought about it, but we didn't." That's our bad for that internalized ableism there. Now that we've learned that, that's something that we can work toward in the future and it's honestly not even that hard to meet. When you're looking for a venue, it's just like, okay, keep that in mind, you have to remember to have it in your mind at all.

Em Mais: I think that goes back to what the article that we were talking about, Here Is Why seven reasons Why Polyamory Is More Difficult When You're Disabled and Katie's statement that polyamory generally presumes ableness and neuro typicality. We just assume that people with disabilities won't be in the space or won't be accessing the space. Accessibility isn't prioritized for organizers, and that's something we see, again and again. I've been to so many events where organizers are incredibly apologetic and very kind in terms of wanting to make the space accessible. The one that I hear over and over again is, "We just didn't think that someone in a wheelchair would be here."

Jase: That sucks.

Em Mais: It's jarring to hear and named in that language. It's definitely a super common thing for folks.

Emily: Wow.

Em Mais: I feel I want to a real quick aside because now we've referenced visibly versus invisible disabilities a couple of times. Just for our listeners out there who may not be aware, an example of a visible disability is something where visibly, you can see that somebody is disabled. Maybe somebody with cerebral palsy or an amputation or things like that. The counterpoint to that is invisible disabilities where there's still a disability, but someone may dismiss it, may not see it as "real" because it doesn't necessarily "visibly" or obviously present. Things like ADHD or bipolar or OCD.

Again, as you said, Em, it becomes a little bit more complicated because there are a lot of content creators out there and authors and writers who may be very open about having an invisible disability, but there may be others who are not at the same time. That means that we can't always make an assumption about somebody in their identity and who they are.

Dedeker: Some ideas with all of this in mind, ideas for accessibility for in-person events would be things like wheelchair accessible venues, also, including bathrooms or having the ability. I know I worked at a restaurant where there were stairs, but we had a ramp on hand and that was used often. Something even has that as an option for accessibility, also appropriate lighting in the space, so folks who use ASL or lipread are able to easily communicate.

Including access information on event postings, and also ask if you don't see access information for events, that's something that's great and that I think that we can do in the future for sure is any event that we have to always post whether or not it's going to be accessible. Hopefully, it always will be from now on. Also, ideas for accessibility for online community spaces will include things like image descriptions on pictures, making sure that there are captions on videos, adding flash or seizure warnings to videos, and also educating yourself on ableist language and slurs and not using them.

I know someone that we have talked about in the path, there's an amazing website called autistichoya.com. Lydia on there has created this incredible page on ableist words and terms to avoid. I definitely recommend checking that out. I just wanted to ask also because I've seen people do the image descriptions on Instagram posts. Can you explain what that's all about? Because I always am like, wait, you see the picture, and then it's just a different way of describing the picture or what's the reasoning behind it? Because it's not something that we do, but now I'm like, "We need to do it." I want to know the reasoning behind it if you can explain.

Em Mais: I'm super excited to get to talk about accessibility in online spaces. We have moved so much to online spaces for community over the last couple of years with the COVID 19 pandemic. I'm really hoping that we keep some of those community spaces but to answer your question about image descriptions, there are a lot of different reasons why folks might use image descriptions, folks who are blind or low vision who have some visual capabilities do use Instagram have lots of low vision friends who use Instagram, who may be able to see the general idea of what the picture is, but then can get some more information about the picture from the image description.

It could be someone who is struggling to understand what's going on in the picture, who might be able to gain some more context from the image description in terms of like say I see a picture of a large body of water. That tells me very little about what my friend is doing or what's going on. If I go to the image description and see a photo of the Atlantic Ocean with sand and my toes in the water, I then know that they're on a trip somewhere in the Atlantic Ocean. This isn't them posting a picture of a dream vacation they want, and it can add some additional context for folks there, but, there are a huge range of reasons why someone may or may not use an image description.

For folks who are color blind, it can help add some definition in terms of, not being able to entirely parse out what's going on in a picture because of lack of color. There are so many reasons why image descriptions are really important and really useful for folk. Then another important thing to know with image descriptions, Instagram add this great capability lately with their advanced functions in terms of being able to embed image descriptions in the picture for folks who use screen readers.

That's really great. You can find that under the Advanced option when you go to Post and while that's really great, also making sure that image descriptions are posted in the comments for folks who may use image descriptions for other reasons is also really important. Making sure that you have your faces covered in both directions there to be as accessible as possible.

Emily: Awesome. That's extremely helpful. Thank you. First one, but appreciate it.

Dedeker: Then later in the episode, we're going to be into even more specifics about ways to make online spaces and online content more accessible as well. Now we're going to dive into, in particular, the challenges that can arise from being disabled and also pursuing polyamorous relationships. Let's start also with some more definitions that we're going to be using in this section.

Em Mais: Many definitions today. The first two definitions that we have today are inter-abled relationships and intra-abled relationships. I'm going to try hard to enunciate. An inter-enabled relationship is a relationship between a non-disabled person and a person with a disability. This is a term that's commonly used and has been used throughout disability studies, as well as pop culture and things like that. Over roughly the last 10 years, I have struggled to figure out where exactly it came from, but it seems to have been around for about a decade.

The other term that we have here is intra-abled relationship, which is defined as a relationship between two people with the same ability status. This can be a relationship between two or more disabled people or two or more non-disabled people. This is a term that has come out of my own struggle to explain some of my relationships with other disabled folks. For a really long time, I was using the language of crip for crip shortening the term cripple, which is a reclaimed slur that the physical disability community uses.

While that term is great, the term crip is obviously used for other thing, which then confused people. It also limited what I was able to talk about in terms of my relationships with other disabled folks because not everyone has a physical disability and can reclaim the language of cripple, so the term intra-abled came out of a need and desire to explain the unique components of my relationships with other disabled folks. I have more information about that process on my Instagram at queer and polyamory.

Dedeker: We'll plug that again as well towards the end. I think one of the main challenges in dating as a disabled person, especially in the context of polyamorous relationships is finding partner. Again, we're going to quote from Katie Tastrom's article about reasons why polyamory is more difficult when you're disabled. They say "Finding partners who are willing to make the necessary adjustments to make a relationship accessible is a hurdle and opportunity that disabled people face."

Something related to that is the fact that just our baked-in overall ableism in our culture and that's in a lot of people, also just make it harder for disabled people to find partners. People sometimes straight-up don't always want to date people with disabilities or the people who do sometimes will fetishize someone who is disabled as well.

Jase: Something to point out with this too is that that's not a unique problem to polyamory and that'll be true with a lot of the stuff we're going to cover that that a lot of these are not actually unique to polyamory, but have come up in that context and that's where people are talking about them, but just for those of you non-polyamorous people out there listening, I'd say that one applies equally much there.

Another aspect of this is being in even one relationship, but especially if you're in multiple relationships can be extra challenging when you have very limited energy levels or very widely fluctuating energy levels. In the article, Disability and Polyamory: Exploring the Edges of Inter-Dependence, Gender, and Queer Issues in Non-monogamous Relationships, the author Alessandra Alex Iantaffi says, "Fatigue affects the way I relate to my partners and whether I choose to engage in challenging conversations with strangers, colleagues, clients, or acquaintances.

Having more than one partner, in turn, influences my energy levels and the political commitments that I can take on." The way I think about this is that all of us can relate to times where you're just more tired and just don't feel like having that conversation with this new person you've met about what polyamory is or what your relationship status is or whatever it is, I think we can all relate to that.

If you have especially low energy because of a disability or an injury which from our definition earlier is also included in that definition. Being in chronic pain can massively influence your energy levels and your ability to focus and to put up with shit that the rest of us might take for granted. I think all of us can relate to this a little bit and just to keep in mind like, gosh, yes, that would be even more so, that's where thinking about being aware of.

Emily: Now let's talk a little bit about sex and potentially the attitudes about sex and disability that we as a culture have or the ableist attitudes are baked in attitudes a lot of the same things that we've been discussing today. We're going to say yet another quote from disability and polyamory which is "If I/we are truly disabled, how can we be sexual and to add insult to injury of the now shattering old constructs, be sexual with more than one person?"

Dedeker: Yes. I think that really speaks to the fact that, like you were saying earlier, about you going to event organizers and people being apologetic, but just saying, "Oh, I just didn't even think about that," I think that when it comes to sex and disability, there's a lot of that in our culture of just not equating sex with disability or disabled people at all.

Really seeing disabled people as just asexual and therefore we don't even have to think about that and so then to go, not only sexual but then subversively sexual in the sense of this person says being sexual with more than one person, I think it just makes a lot of people's brains explode to a certain extent.

Em Mais: Yes, for sure. There's definitely a lot of infantilization and desexualization with people with disabilities and disabled people choosing to be sexual is something that is seen almost as a political statement which we've seen a lot in the last month or so with the lovely new Victoria Secret model who has down syndrome and it just being posted on social media like what do you think of her choice to do that?

This is an adult woman who has consented to being a lingerie model. We would never ask those sorts of questions on these sorts of platforms about a non-disabled person choosing that line of work because it's definitely just a cultural shocker still to see disabled folks as sexual people.

Dedeker: Yes. Definitely.

Jase: Absolutely. Also, she's 24 and we could see a Victoria Secret model who's 18 and not ask a question. I'm like, at least from my memories of being 18, you don't know anything about your decisions that you're doing. I would question their ability to make that decision more this 24-year-old.

Emily: Also something we've already talked about a bit are access needs and just asking the questions, what are a person's access needs, but it's difficult, I think, for a lot of non-disabled people, they just don't know necessarily how to have these conversations. It can be challenging at first, this is probably something that needs to be potentially practiced and researched in order to learn how to have these conversations in the variety of different situations.

Em Mais: I think one of the really great parts of polyamory is that it gives you a framework for having uncomfortable conversations or conversations that we don't see modeled growing up. If you have that practice with having challenging conversations, then it is a lot easier to learn how to have conversations about things like access needs.

Jase: Yes. That makes a lot of sense.

Emily: That makes sense, definitely

Em Mais: One of the other big challenges that folks who are disabled and practice polyamory run into, and I know something that I've experienced quite a bit is the idea of fear of missing out and jealousy as it relates to disability. FOMO and jealousy are something that are talked about a lot in the polyamorous community. There are a lot of really great tools that are given for addressing these things.

Some of the recommendations that I see a lot are things like we're experiencing FOMO about your partner, your metamour, going on this really amazing hike to see this waterfall. Why don't you plan a hike date to see something really cool with your partner?

For folks who are physically disabled and who are experiencing FOMO or jealousy because of their disability, it can be really challenging to have those feelings come up as a result of something that you physically can't do. A lot of the recommendations that are given in the polyamorous community at large aren't necessarily as useful or applicable as they would be for not disabled folks.

Unfortunately, I have not found a super easy fix for this. If someone has a magical super easy fix for FOMO and jealousy as a disabled person, I would love to pick your brain, but in terms of things that I found to be super beneficial support from a therapist who specializes in working with people with disabilities and who is polyamorous affirming its supportive, has been a really amazing opportunity just to have a space to talk about those feelings and get some input from a professional who has some experience addressing them.

Finding activities that can do, and being intentional about focusing on the things that are unique to the relationships that I have instead of looking at the things that my partner and metamour are doing that maybe I can't do and shifting that view internally has been a huge game-changer for me. We talk a lot about compassion in the polyamorous community and it is not necessarily attainable for everyone in every situation, but for me, and for folks I've talked to working on building compassion is huge.

I can feel really sad that I missed that amazing hike to the waterfall, but I can also be really excited that my partner had someone to go with them to experience that and to be safe and have that support in case they fell or things like that. Then walking this thin line between knowing what you can and can't do and accepting the things that you can't do while also not giving into assumption or things that we've been told that we can't do.

I know for me, something that I was told that I couldn't or shouldn't ever do again is ride a bike. I am a wheelchair user, my hips are atrociously unstable. It would just not be a safer viable option for me so I stopped riding a bike when I was about 14. I rode a bike for the first time about a year ago, I found a really amazing handcycle that is power assist and recumbent. Doing the research in terms of like, "Yes, I know I can't ride a standard bike," but like, what are my options out there

Em Mais: out there to be able to do the things that I want to do. I know I live in Colorado and there are a lot of really amazing opportunities in terms of all-terrain vehicles designed for wheelchair users to be able to hike. There are so many--

Jase: Wow. That’s awesome.

Em Mais: Yes, there are so many pieces of technology that have been created in the last decade or so that have opened up so many doors for folks with disabilities. Just because you've historically believed or been told you couldn't do something doesn't necessarily mean that it's entirely off the table.

Jase: Wow.

Dedeker: Yes. You talking about that and talking about the unique challenge that FOMO and jealousy can present I think particularly specifically in inter-abled relationship as well, it brings to mind that over the years, I've worked with a lot of different inter-abled couples. It seems like this is the kind of thing where I think the emotional skills around this are almost a little bit different because I do think that it requires, I think the person, the abled person, to be able to sit with and hold steady, being able to sit with their disabled partners, maybe FOMO or jealousy around some of these things.

It's like the approach is a little bit different than I think what a lot of the standard like polyamory advice is about being able to sit with these things. It's almost like the emotional attunement around these things is really crucial. At least that's my experience when working-

Jase: That's specific.

Dedeker: -with people and specific, yes. Also again, I would say I would come to the conclusion that I haven't found an easy fix for these situations other than really encouraging people to that attunement and really being able to hear listen to each other and listen to what each other are needing around these situations that may come up.

Em Mais: Yes. I think it's tight often tied into like so much more than just FOMO or jealousy. I know you guys have talked in the past in terms of what sorts of emotions underneath jealousy or what's triggering the jealousy. I know a lot of folks with disabilities that I've talked to, what's sitting under that jealousy and FOMO is just a very real mourning of an ideal of being able-bodied and the realization of not having that privilege. Addressing that is a lot more challenging and a lot more ongoing than I think a lot of the emotions that sit under jealousy more typically are.

Dedeker: Yes. I would definitely agree with that. It's like we are grappling with something that's bigger than just, oh, I feel a little jealous because of the fact that you're dating someone who's in my same field and I feel a little threatened by that. It's like, not that that can't be deep and existential but yes, I do think that these situations tend to cut much deeper just right at first glance than maybe other situations do.

Emily: That's not a thing that we should just throw a blanket statement on like, "oh, well, just you need to work on in your own internal work or whatever." Yes. It's very, very different than that.

Dedeker: Yes.

Jase: One last thing that we wanted to cover on this before we move on to some benefits of polyamory for disabled people, is that it's just to remember that trauma plays a big role in relationships. I'm going to first pause right after that statement, that trauma plays a role in relationships. We've done some episodes about this in the past. When you look into like the prevalence of sexual abuse, specifically for women, sexual assault, things like that, it's like most of us this shows up somewhere in our relationships. Through friends, partners, ourselves, whatever it is.

That's the first thing and then the second one is that rates of trauma and abuse are much higher with people with disabilities. Specifically, one study was talking about more than 90% of people with developmental disabilities will experience sexual abuse in their lives, which is that horrifyingly high number and that 49% of those will experience that abuse at least 10 times during their life. These are just, I don't want to bum us out too much but that is a bummer and I think something we should all take a moment to reflect on the fact that that's the world that we live in.

The takeaway that we want here is just more to acknowledge that that's something that exists. We've done other episodes about trauma and I definitely recommend checking those out if this is something that's coming up in your relationship. I think even just being aware that that's going on and that that does have a very serious physical as well as emotional impact is really important.

Dedeker: We're going to take a quick break. When we come back for the break, we're going to be talking about benefits within the polyamory community. We're going to be talking about how non-disabled folks can be a better ally to the disabled folks in their lives, action steps that all of us can take to make this a little bit better. First, we need to talk about our sponsors. The way that we keep this show being distributed for free and not behind a paywall all the time is through our sponsors and through our Patreon support. Thank you so much for listening to these ads.

We are back. We're going to be touching on a little bit of the ways in which choosing polyamory or being part of a polyamorous community can be supportive of folks with disabilities. I'm going to be quoting from a piece by Amanda Van Slyke and their piece is called How Polyamory Helped Me Advocate For My needs As A Disabled Person. Amanda points out that there's something about having flexibility to build relationships that work for you and your needs.

They write, "One of the great things about moving away from compulsory monogamy is the opportunity to create the structures that work for us at any given time. Polyamory doesn't need to look a specific kind of way as long as it works for you and your partners. It wasn't until looking into solo polyamory I realized I don't have to feel guilty for having separate needs from my partner." Which is not always something that is necessarily baked into compulsory default monogamy.

Em Mais: One of the other benefits of polyamory is a wider pool of support and that there isn't this assumption that your monogamous partner will be providing all or most of the support in your life. In the article, Applying Universal Access To Love and Polyamory. The author, Avory, says, "Imagine the kind of awesomeness that might happen in a polyam network where the functional norms include open communication, awareness of our own needs and others’ needs, and encouraging collaborative solutions." Maybe it means in my metamour who has a car stops by with tea and decongestant when I'm sick so that our partner doesn't have to cancel her date and I get the support, compassion, and sweet, sweet drugs that I might otherwise just be secretly craving.

Maybe it means in an asexual person in a polycule with a big physical touch need gets to sleep with someone every night, whether a partner or not. Of course, I realize that not everyone has this kind of network or practices this kind of poly. It doesn't necessarily work well in a community where folks don't feel comfortable talking to their metamours. It can be hard to make the leap towards wanting your metamour needs met to the degree you want your own needs met, no matter how generous you are."

Jase: I love that kind of thing of like when a polyam network can be supportive of each other that way and it's not just about people having sex with more people. I think that's where kind of the--

Dedeker: That's the dream. Yes.

Jase: Right. That's the dream is like you're part of this whole community and that you're able to get support from those other people who are on your team as it were in terms of you're both on a team loving the same other person. I love that kind of stuff, it's so cool.

Em Mais: Yes. It's definitely, I think a goal of what I would love to see happen more often. I don't think that it necessarily has to come from a place of compassion but seeing us all work towards making sure our collective needs are met is really exciting to see and seeing how polyam can fit into that. Another big plus of polyamory in the context of disability that I found is that things that aren't necessarily possible for me or a part of my life because of disability are things that I have access to through my partners and through the lives that they've built.

I think the biggest or most clear example of this for me, is getting to have relationships with the kiddos of the people in my life. I have a genetic condition that is dominant. Meaning if I have kids, they're pretty much guaranteed to have the same disorder that I have, and I probably couldn't hold a viable pregnancy. Having kids just isn't in the cards for me and I can't be a primary caregiver in a diatic relationship in the conventional sense.

Getting to queer this idea of family and show up for the kids who are in my life, has been a really, really amazing opportunity to get to have, and look outside this definition of two parents as primary caregivers to a kid. Of course, there are other examples of the ways that polyam can make things possible that aren't necessarily possible. I think that that's one of the most clear examples.

Dedeker: Yes, definitely. I think something that I want to point out is when we talk about some of these things, like these intimate networks of people who are caring for each other and where the metamour can stop by and bring tea and drugs and things like that. Sometimes people will jump to the conclusion of, "Oh, it has to be in this very unrealistic utopic bucolic vision where everyone's living on the compound, they've all come together to buy their piece of land and build their tiny homes and don't get me wrong, that's great.

People are into that and people have done that and they love that. Also, this is a thing that I've both experienced and have watched play out, even when that's not necessarily the case. Even when it's not necessarily the case that everyone's practicing kitchen table polyamory, or everyone's getting along together all the time, or the metamours absolutely love each other. You don't necessarily have to have those things in place to still have this intimate, supportive network that still functions like a family or like a community.

Think about all the wide varieties of even just families that we see who don't have to be living on a compound to still be able to offer that sense of both emotional and physical and financial support as well. I just wanted to drop that in just so that people can get a sense of it doesn't have to look this one particular way in order for these benefits to come through.

Em Mais: Yes, for sure. It doesn't even necessarily have to exist in the context of kitchen table or garden party or whatever, polyam. I have had partners who are parallel polyam who were still able to provide support at the same time. Whether it be one partner is hanging out with me and the other partner drops off food outside the door for us and just texts me, "Hey, your dinner is outside," you can have these support networks. There are totally outside of folks having to have relationships with one another.

Dedeker: Yes, definitely.

Emily: Also, if people aren't necessarily going to have kids that will provide them eldercare eventually.

Em Mais: Yes.

Emily: Which I think is that's how our society has functioned for long, but that definitely isn't necessarily what's going to be happening as so many people, I think, in our age group are having less kids. That may not be a thing, just the idea of getting the opportunity to be around a community and create an intentional community for things like that, or helping out a disabled partner or an elder member of the community, eventually, or somebody who just happens to be sick that day. All of those things are really amazing, and something that I think we should build more into our society.

Em Mais: Yes, for sure. I think for me another big perk that I found that I've talked to other disabled polyam folks about as a huge plus of polyamory is that I'm able to have close relationships with other people with physical disabilities, and don't have to stress about the things that I can't do, or the sport that I can't provide, because of my own disabilities. Like what we were just talking about in terms of having this wide support network for folks. Being able to practice polyamory and have metamours who are able to provide source of support that I'm not able to, has opened me up to being able to have a wide range of relationships with folks that otherwise I wouldn't be able to.

In the US, our system is set up in a way that requires you to have access to a partner or a family member who can provide physical care, especially right now, with the care shortages we're seeing during the COVID-19 pandemic. If you don't have someone in home, whether that be a partner or a family member, you run a very, very high risk of being institutionalized for your care needs. I'm seeing this again and again, in the line of work that I do in Medicaid case management of we're having to move young folks into nursing homes because they don't have the care that they need.

As a disabled person, I think I would experience a lot of anxiety around dating other physically disabled folks because the reality is that I cannot operate a Hoyer lift. I cannot put my partner on a lift and get them in and out of bed. That is just completely unrealistic for me to be able to do but I can come over and advocate with medical providers or spend time with my partner and hang out and have a metamour around and be there to be able to say, "Hey, can you help them with a trance?" Can you help us if we get stuck somewhere in our wheelchairs as someone who dates other wheelchair users, two other people that I date are wheelchair users?

I love to go outdoors and go adventuring in Colorado and it requires that I have an able-bodied metamour or friend come with in case we get stuck. Those sorts of things being a really amazing component of polyamory.

Jase: Yes.

Dedeker: Again, I feel like we talk about this till we're blue in the face on the show and again, to not bash monogamy or anything of that nature, it is just hard that our culture and our government really sets up just all 6 billion different roles to be placed on each person to support for each other. Then when we start getting into any relationship situations that's slightly more complex or identities that are slightly more complex or disabilities that are slightly more complex, it's like those roles increase and they multiply and they magnify. That's an issue that as a culture even with monogamous relationships we have not solved and that a lot of our social support structures personal don't exist and our government has often really abandoned people as well, in those situations. Again, I don't think necessarily monogamy problem but if you know the context that we're in, that makes it really difficult to do that.

Em Mais: Yes, for sure. The last big benefit, which I know we mentioned a little bit earlier on in the show is polyam folks, in general, are more comfortable having these uncomfortable conversations or conversations that we weren't given a script around and being really direct about having conversations about things like privilege and power, and the ways that those things show up in polyamory. Especially looking back at the episode that you guys did a couple months ago on the RA Smorgasbord and looking at the ways that power and privilege are really directly addressed in that.

There are frameworks within polyamory that make it a lot easier to have discussions about how an inter-abled relationship might look or what privilege and power shows up within those relationships.

Emily: Now we want to talk a little bit about how non-disabled folks can be better allies to the disabled folks in your life. The first thing you can do is make your life together, accessible. In her piece, How To Date a Disabled Person and Be a Loving Ally to Them. Alaina Leary Lavoie says, "Accessibility is often assumed to be our burden as disabled people. It's up to us to ask if events or places are accessible and to advocate for our access needs, you can be a fantastic partner by taking on this task for yourself." Yes, that's just emotional labor that you can do for your partner right there. That's a really excellent thing to point out.

Also, do your own research. Listening to this podcast and just being a part of this podcast today, I've learned so much from having these conversations with you Em. I think this is a great place to start also going to your Instagram, and then doing additional research on your own, all of that is really important. Then also challenge other people's ableism. We talked about a variety of ways in which that comes up just how it's embedded in our culture, how it's embedded, I think, internally in so many of us, and if that tends to come out, or you see it in other people, challenge it, speak up about it, talk about it.

Jase: One little caveat I'd want to add to that is to have a conversation with your partner about it first, because sometimes your partner might be like, "I would actually really rather you didn't make a scene about certain things in certain contexts." I do think that's worth having a conversation so that you're doing it in a way that's supportive to your partner and not just steamrolling that into it.

Em Mais: Yes, for sure, that balance can definitely be challenging to figure out.

Jase: Yes. If you think about it applies to being queer or being polyamorous or being vegan, or whatever it is, you could want to stand up for a partner. Also, sometimes they're like, "Please don't right now." Knowing when's the right time is good.

Em Mais: Yes, for sure. Another big thing is don't make assumptions about people with disabilities, independence, or interdependent. Don't make the assumption that interdependence is necessarily a bad thing. I think in the polyamorous community, we tend to hyper value independence and individualism. In Western culture, in general, these are definitely values that are placed on the pedestal, and while it's really important to be able to be independent. That's not necessarily always the best option or an attainable option for folks.

Figuring out and challenging your own internalized notions around independence, dependent. Going back to the article, How To Date a Disabled Person and Being a Loving Ally to Them. The author says, "I love it when the people in my life, let me make my own choices about independence. If I need help opening a door or carrying my food to my seat, I'll let you know. Otherwise, I'd like to give it a try myself."

Yes, I think that's a really amazing going back to what you were saying, Jase, about having conversation with your partners and with the folks in your life about what their preferences and comfort and things like that are around the ways that they want you to show up in your relationship together. Another quote from the article is, "Reconsider your values around interdependence, particularly in Western culture. We're often taught that complete independence, whatever that really means, is the only way and being dependent on others makes you a burden.

In reality, we're all interdependent on one another. You might rely on the trained driver to get you to work, or the postal service worker to bring you your check from your employer. Make space for more interdependence in your life and open yourself up to the vulnerability of being more deeply connected through your interdependence." I just really love that quote because I think that it's very easy to view particular people in particular body-minds as being dependent because of what their support needs may be.

Folks with high support needs like needing support with things like transferring or brushing their teeth are often viewed as dependent when in reality you are also dependent on the person who manufactured your toothpaste and the store clerk who sold you your toothbrush. None of us are truly independent unless you are living off the grid and making your own toothpaste out of Lord only knows what.

Jase: Building all your tools from scratch and people who live off the grid, I always see there's like stuff that came from other people that got manufactured somewhere.

Em Mais: It's just a matter of a spectrum of support and support needs that folks have. Really challenging this idea and we see along polyamorous group. Like, "My partner is so dependent on me," and you are so dependent on so many people. Why are we framing particular support meets in particular ways and examine your own ableism just in the way that you talk about that? Switching over to disabled folks in terms of things to think about and be working on in terms of polyamory and building your own skills in relationships just in general.

One of the biggest takeaways that came up in a lot of the articles that we referenced today was advocate for your own wants and needs. We are our own biggest advocates and this goes for nondisabled and disabled folk. We cannot expect the folks in our lives to be mind readers. It's just not a realistic expectation. Being very direct and having those hard conversations about your wants and needs is such an important skill to build over time.

The other big takeaway that came up in a lot of the articles that we've referenced today is address your own internalized ableism and realize that you deserve happy and healthy and supportive relationships. In an article called The Ableist World of Dating, Clinical Psychologist Dr. Russin says, "A disabled individual who has internalized society's message that they're undesirable or unlovable may feel indebted to their partners for being with them. This may create difficulties in assertiveness or expressing their emotional needs to their partner and could lead to situations right for abuse as the disabled person feels that they're lucky and cannot ever find anyone else." And yeah–

Jase: I feel like so many of us have wrestled with that anyway and it's like I can absolutely see how that would just be like another factor in addition to all the other ways that you can feel like, "Oh, well, I'm indebted to this person." Maybe because they pay for more things or just because I don't think I'm worthy or whatever. Gosh, that makes a lot of sense.

Em Mais: When you hear societal messaging like strangers coming up and saying things to your able body partner, like, "Oh my gosh, you're so good for staying with them." What kind of internalized ableism–What type of messaging do you internalize from that? Just making sure that you are deflecting that messaging and that you're getting the support from your partner and from the folks in your life in terms of them addressing and calling out that sort of ableism.

Get support from a therapist. I'm just going to keep saying it because I'm a huge fan of clinical health psychology as a field. I think that we need way more folks in the field. Get support. There's absolutely no shame in seeing a therapist who specializes in disability and in relationships and getting that professional support. Because like I mentioned at the beginning of this podcast, there are so few easily accessible resources on the internet in terms of how to navigate these situations.

Having a therapist can really be a huge game-changer. Then the last thing that we have is find representation of the types of relationships you want to have and have that show up in your everyday life. For me, one of the big ways that this has shown up is finding folks on Instagram and Twitter, and other social media platforms and following them just so that I have that representation of seeing inter-abled and intra-abled relationship just as a normalized thing and encouraging the folks in my life to do the same thing. To almost desensitize to that infantilization and desexualization of people with disabilities because the more you see it, the more it just becomes normalized for you.

Dedeker: That's a great segue into talking about action steps that everybody can take and I think being intentional with your social feeds. If you're someone who connects to social media, being intentional about that and intentionally diversifying that and choosing the things that you do want to see and the experiences and stories that you do want to be exposed to. In my opinion, I think it's such low-hanging fruit for education just through exposure.

It's so easy just to find a hashtag and just follow some folks and then just see what that's like when you're exposed to that over time. It really, really does change your perspective on things. I also really want to encourage people, there's a particular Ted Talk and I specifically have this Ted Talk that I want to prescribe to '90s kids and I'll explain what I mean by that. It's a Ted Talk that was released in 2014 by Stella Young, who's a disability activist and their talk was about inspiration porn and the objectification of disability.

The reason why I prescribed this talk for '90s kids is I think that there were a lot of social issues that those of us who grew up in the '90s were taught about in school in ways that all thought were good and healthy and then now that we've rocketed into adulthood, they're not great. This applies to the lessons we were taught about race, lessons we were taught about gender, about sexuality, and particularly about disability.

The particular flavor, I think a lot of us got growing up was, "Oh yes, we can include disabled people and we can have stories of disabled people and show images of disabled people, but really only in a sanitized version that is inspirational. As in, we're only going to show you images or stories of disabled people who are "overcoming" their disability in some way, or we're going to show you images and stories that realify the abled people that are helping these disabled people and how great are they and that's why Stella Young came up with this term inspiration porn.

I just really want to encourage those of us who grew up with that to just seek out resources that evolve beyond that. Maybe that was a little bit of a sideway step in the "right direction" where you're like, "Oh, it's not as bad it's like erasing, but it's also not like a good thing." I just want to encourage people to find resources stories, images of disabled people that aren't just inspiration porn, and that Ted Talk is a great place to start.

Connecting to resources and educating, then you can think, and you can talk about the ways that disability and accessibility show up in yourself and in your relationships. You can think about, have conversations about how they show up in your relationships if you identify ways ableism shows up, how do you want to address that? Are there areas where you want to do things differently or better?

Emily: All ready, this has been amazing. We really, really appreciate you coming on and educating us about all of this today and we hope that our listeners got a lot out of this. I know I certainly did. Where can our listeners find more of you and more of these resources that you were discussing today?

Em Mais: I just started an Instagram account for these sorts of discussions. That Instagram is @QueeringPolyamory and then some other folks that I would recommend in terms of going back to that diversifying your feed that we were just talking about Ryan Manson on Instagram who is I believe @Chronically Ry, Andrew Gurza, who I know you guys have had on the show before and Nina_Tame is a really amazing disabled comedian who has a lot of great content around inter-abled relationships and how to show up and be a good ally for your disabled partner.

Jase: Awesome. Again, this has been great and we're going to continue this conversation in our bonus episode for our patrons. If you're interested in checking that out and you're not already a patron, maybe now's the time to become one so you can check out all the bonus episodes for all the episodes. We also have a question that we're posting on our Instagram story this week, which is how to address your internalized ableism. We would love to hear from all of you out there of what's come up for you.