The Complicated Intersections of Disability and Asexuality
Living at the intersections of Disability and Asexuality is complicated and we need to have this conversation. Ableism is rampant in the Ace community, while acephobia is equally abundant in the Disabled community. That is why Courtney is founding Disabled Ace Day on Wednesdays during Ace Week. In this episode, Courtney (a disabled woman) and Royce (her spouse and accessibility expert) discuss the deeply discriminatory histories that have put these two communities at odds with one another as well as some of their personal experiences with discrimination and volunteering that highlight why a day like this is so important.
Courtney: Hello everyone. Happy Disabled Ace Day! As of the day this podcast is coming out...October 27th, 2021...it is, officially, the very first inaugural Disabled. Ace. Day.
Courtney: My name is Courtney. I have lived experience as a disabled woman. I’m here with my spouse, Royce. Royce is somewhat of an accessibility expert. Today, we are going to talk about why it is so. VITALLY important. To discuss the intersections of disability and asexuality. Let’s get into it.
Courtney: I suppose I might also add that we are a married couple. Royce, that does mean that you also have lived experience as...someone who is married to a disabled woman. Royce, have I ever told you exactly how...cool it is? That, when we’re out in public, or taking a walk around the neighborhood, you actually...walk slowly, at my pace...and don’t go way ahead of me all the time?
Royce: Many, many times.
Courtney: Many, many times... That’s something that I don’t think anyone who does not have experience...as a disabled person with mobility needs, who...travels slower than the average, able-bodied person. That’s something I don’t think a lot of people really quite appreciate. Disability pro tip – marry someone who does not...
Courtney: ...yell at you for slowing them down.
Courtney: In all seriousness. Last week, we talked a little bit about...some of my own personal experiences with disability discrimination in LGBT spaces. This week, I want to...home in a little bit, and focus on the...specific complications. That exist when you live as both a disabled AND an asexual person. It really is a very tricky intersection. That is why we are founding Disabled Ace Day. This is why this is so important.
Courtney: The complications are really twofold. Not only is there a tremendous amount of ableism present in asexuality communities. On the other hand, there is also a lot of acephobia that comes from disabled spaces. It’s really, well and truly, a double-edged sword. There are very important reasons, why this is the state of things. And, why both of these communities are so quick to try to distance themselves from one another. But that leaves a lot of people, like myself, in the crossfire.
Courtney: Let’s talk first about the ample...ace-exclusionary language that happens in a lot of discourse surrounding disability activism. If you go on Disability Twitter. If you follow a lot of disabled activists. If you follow our hashtags. It will not take long, before you start seeing these broad, sweeping generalizations, that predominantly revolve around. Disabled people being Sexual. Beings. Truly, a LOT of disabled activism. Revolves around sex. There is a reason for this, and it is very important to...examine that reason. Because, disabled people are often completely desexualized. They are infantilized. There is a deep, deep history around...eugenics, and other forced sterilization. A cultural belief that had been present in history for many, many years. Truthfully– given the pandemic, and how quick people are to dismiss… “Only the people who are already disabled are going to die of COVID!”– that...culture of eugenics is still...deeply ingrained in our society. When it comes to disabled people.
Courtney: Naturally. In response to this. Disabled people are going to want to say, ‘Yes, we DO have sex. We CAN enjoy sexual activity. We do HAVE CHILDREN. We WANT to have children...’ because of the very fact that– in a larger, societal scale– they are painted as... Either people who are too young and childish to be interested in sex. Some may even take it so far as to say that some disabled people can’t CONSENT to sex, which is absolutely ridiculous. Then on the other hand, you actually have violences being said – that disabled people should NOT be allowed to reproduce.
Courtney: The reaction to this very problematic history becomes, itself, an issue. When...the disability activism devolves into statements that I so often see. Statements like, “Yes! ALL disabled people enjoy sex. Because we are HUMAN!” Taking away from the fact that...you should never, ever paint...ANY group of people as a monolith, right? We all say that “no marginalized community is a monolith.” Any time you’re speaking on behalf of all people, you are. Automatically wrong. But that last little jab is something I see so often. Where, you are equating. Sexuality. To humanity. This very much becomes a type of...aphobia. It is rampant in the disability community. Regardless of the context, having or wanting sex should never. Ever. Be a qualifier. For one’s Humanity.
Courtney: On the reverse end of things, the asexual community is...never any friendlier to the disabled community. Because we have a lesser-known sexuality, a lot of people do not know what it means to be asexual. In fact, we’re very often called “The Invisible Orientation.” So, any time an asexual individual speaks out about their own experience...we very often feel this need to defend our ace-ness, preemptively. Often this comes with qualifiers, such as “There’s nothing WRONG with us. There’s nothing BROKEN with our BODIES. We’re NOT disabled. There’s nothing WRONG with our BRAINS that’s causing this.” Hopefully I don’t need to point out why...that’s wrong? Because disability is, itself, not something to be ashamed of. You should not ever feel like you’re in a place where you have to say, “Nonono, but I’m not disabled!”
Courtney: We wouldn’t be doing ourselves any favors to just say that “a large portion of the ace community is ableist,” and leave it at that. Much like the disability side of things, there is a deeply-rooted history that is...causing the broader ace community to react, and respond, in this way. Asexuality, as an orientation, has been deeply medicalized– and widely pathologized– for YEARS. In practice, this is still happening to asexual people on a much higher scale comparatively to other sexualities. I’m sure it will come as little surprise, to most of you, that...things like homosexuality used to be...equated with mental illness, back in...pre-’70s era.
Courtney: For anybody with a bit of knowledge pertaining to psychiatry, you may be familiar with the DSM, or the “Diagnostic and Statistical Manual.” This is, essentially, a guidebook that many...psychiatrists use, to...keep track of, and reference, a variety of...psychiatric conditions. And while the DSM– once upon a time– did list homosexuality as a mental illness, for example. The most recent DSM-V– the 5th edition– does still currently have a condition. Known as, “Hypoactive Sexual Desire Disorder,” or HSDD. Which, many in the asexual community take to basically be a pathologized version of what asexuality is. In practice, this means that, many of us have...psychologists. Doctors. Medical professionals of all kinds, who...may take our sexual orientation as something that IS. Medically. Wrong with us. Or even taking it a step further, as something that needs to be “fixed.” While we know in our hearts that our aceness is...just as valid an orientation as homosexuality. Bisexuality. Heterosexuality. What-have-you...we are still being treated as though this is a medical condition. On a much larger scale than any other sexuality. In this, the year 2021. So, naturally, we’re going to be sensitive to this, and we’re going to be angry.
Courtney: It, once again, becomes a problem. When we...double down, and dig our heels in, and say, “We’re not disabled! There’s nothing wrong with us! There’s nothing broken that caused our asexuality!” Because these can very easily bleed into ableist territory, where we are seen as...defending ourselves against being disabled. As if being disabled...were a problem. Which it very obviously is not. These are obviously huge, huge conversations that need to be addressed. Both of these groups have deep, systemic issues, and a long history of oppression. But the response to that oppression, in a modern context, really puts the two groups at odds with one another. Naturally, we are going to fight for change. We are going to...want to have our voices heard. And our humanity acknowledged. But fighting for our own humanity should never come...at the expense of...someone else’s.
Courtney: At the end of the day, we are all fighting against the social concept of the normative. Default. Body. The default body, in our modern society, is...white. Male. Cis. Straight. Allo. Middle class. Anyone who is in a marginalized community, and doesn’t perfectly fit in with that...default, “accepted” body...is going to fight for the respect that they deserve. This is only right, and natural, but... It does. None of us. ANY. Favors. Whatsoever. To try to make ourselves seem more palatable to outsiders, by qualifying ourselves with, “I’m not straight, but at least I’m abled,” or “Yes. I might be disabled, but at least I’m allosexual. I’m still a sexual being.” At the end of the day. All this really does is real, tangible harm, to members of the community who live at these intersections.
Courtney: This even goes back to our...very first podcast episode, where we were talking about the...concept of this unspoken ideal. Where there is...a perfect activist out there. There is an activist that– whether explicitly stated, or not– is THE “right person,” that the community by and large wants...to be represented by. The way things stand right now. This theoretical, ideal, disabled activist. The ones that get the most praise and attention. The ones who have their voices heard. Are the activists who are very outspoken, and comfortable, in their...allosexuality. But, on the flip side. The ideal asexual activist is someone who is physically, and mentally, healthy. So where does that put all of us who are both asexual...and disabled? We have...experienced harm from both sides of these communities. And yet, neither side is fully willing to listen to our very real experiences, because they’re. So. Quick. To distance themselves from one another.
Courtney: Where exactly do we go from here...as a community? I’m talking to the asexual community. I’m talking to the disabled community. I am especially talking to those of you who are like me. Who exist...at the intersection of these two identities. We know that there’s no such thing as an ideal activist. That we’re all fighting for our own humanity– to be seen– but how do we have our voices heard? When the larger communities revolving around our...dual identities, are...often seemingly at odds with one another. I personally have– very often– been told that I am not. The “right” person. To be speaking about asexuality. I have outright been told by...many, many people online, that I should not be the one, talking on behalf of the asexual community. It’s been proven to me. Time and time again. That the asexual community, at large, is NOT. Ready. To have this conversation. Admit, and own up, to the ableism that is so rampant within it. And to make...real, tangible steps to move forward, and...do better.
Courtney: And so, after years and years of being told– over and over again– that I should not be representing the asexual community. I thought, ’Alright. Maybe people will be more receptive if I STRICTLY stick to my own personal experiences. I will talk about things that I have seen. Things that I have experienced. And I will claim to be speaking for NO one other than myself.” [dramatically, with southern accent] Oh, my Lawd, did that go poorly!
Courtney: I swear to you. The reaction...to me...
Courtney: ...talking about my own personal experiences. As a disabled, asexual woman. Were SO. Much. More. Hateful.Than any time I tried to speak more broadly about asexuality, as a concept.
Royce: Is it time to finally talk about... [dramatically] The Article?
Courtney: Ah, yes. The Article.
Courtney: Let me take you back. [dramatically] To the long, long ago time, of...June of 2021.
Courtney: It seems like an eternity ago. My word.
Courtney: June, as many of you know, is PRIDE Month. Existing in the ace spaces that I do, I was...feeling the ace love. I was seeing a lot of positive...asexuality activism happening. I obtained...my very first, real...asexual pride flag. I had just finished reading the book “Ace,” by Angela Chen, which was the best book that I have read, to date...on asexuality. I was filled. With all of this pride, and joy. I began using this really...supportive...atmosphere, to try to– once again– start speaking out about the intersections of asexuality and disability.
Courtney: Around this time...that I had begun speaking up again, in the name of PRIDE Month...I had been contacted by a...writer. Who was writing an article about medical bias and asexuality. I had exceedingly-high hopes for it. Because, not only had I never been asked to speak about the intersections of these two identities before. But the author, herself, is also asexual. Never had I been asked to do an interview with a...fellow asexual writer. So I had very, very high hopes.
Courtney: To her credit. It was, in my opinion, a wonderful article. Especially considering the fact that I had been interviewed for...several articles, previously, over the last...six or seven years. Many of them have been. Utter. Crap. I had spoken, at one point, to a journalist for over an hour. Talking about the nuances of asexuality, the discriminations we face...what asexuality is and is not, and...I ended up being one, throwaway line, in an article about VIRGINITY! Not about asexuality. At all!
Courtney: So, I have absolutely been horribly misrepresented in the past. But, I had very high hopes for this article.
Courtney: On the day this article came out. I read it, and I thought it was the...best, most well-rounded...article that I had seen. And it was published on Bitch Media, who has a very good audience, and reach. So I thought a lot of people are going to be getting really good, important information...about medical bias in asexuality. I was really, really thrilled. But, ah...then I started getting a few...DMs, on social media. From...people...whom I do not know personally. Who are in the ace community. Who had “words” for me. About how I...represented. Myself. And therefore. The entire. Asexual community. And I was...baffled. I was absolutely shocked, ‘cause I did not know what I could have possibly said. To upset people, in this particular article.
Courtney: Then I did what no one should do. I went online...
Courtney: ...and I tried to...read the comments.
Courtney: That was a mistake. I was perplexed. And disheartened. To find an ENORMOUS percentage of the online, ace community. Talking about– not how bad the entire article was. I didn’t see anybody saying that– I saw people specifically talking about ME. Why I shouldn’t have been interviewed for it. Why I shouldn’t have said the things I did. It was, “That bitch who had to go an’ talk about urine tests!”
Courtney: We will link the article in the show notes. So you can read the entire thing for yourself. But I will...read a couple of quotes here. I will also make abundantly clear that I was. Not. The only one quoted in this article, either. But I was. The very openly DISABLED one. Who is talking about issues that cause me real, financial harm. As a disabled ace.
Courtney: The article opens, talking about...[dramatically] The House Episode. If you are asexual, you almost certainly know what The House Episode is. If you are not, we don’t have time to quite get into it today. We can probably do a whole episode about The House Episode! Long story short. Dr. Gregory House– of the TV show “House”–
Courtney: ...basically “proved” that people cannot be asexual. If they think they’re asexual, there’s something medically wrong and with them, or they’re lying. No third option. That really goes back to the real world implications of our orientation being...medicalized. And, pathologized.
Courtney: The quotes from me that were used, were – “As discriminatory as this is in fiction, it’s really not too far from what I’ve actually experienced”...“Not only does it lead to fear and mistrust, but it does real, tangible harm diagnostically and financially.” Given some of the...international responses I saw to this article, I do feel the need to clarify, for our international audience – we are in the United States. [jokingly] Hello, hi, we do not have universal healthcare. Our. Healthcare. Is. EXTRAORDINARILY expensive. Yeah, there is such a thing as nickeling and diming, even in...
Courtney: ...the fields of medicine. I have had to pay...truly, astronomical amounts. In medical care. Over the years. As many disabled people do. If you go online and search hashtag “criptax”. You will start to see...disabled people, from all walks of life, talking about. Exactly how much...more money they need to spend, as a disabled person, than our able-bodied counterparts.
Courtney: The author explains that I informed her that I need an above-average number of x-rays in any given year, because of my condition. And that I also shared with her that. EVERY single time. I need to take a mandatory pregnancy test, before I have an X-ray. Because they WILL NOT give you an X-ray without that...“proof” of not being pregnant. And yes, they make you pay for that test. Trust me, that adds up when you’re doing that many times a year. To really. Drill down. How ridiculous some of these are. I have, quite literally, been in an office. Needing an X-ray. On my period. Saying, “No, no. I have not had any kind of intercourse in...over a month.”
Courtney: You can absolutely say, “I’m a virgin,” and they will not believe you. There is nothing you can say to these doctors. Especially when a lot of our...medical facilities are actually...religious organizations, and they are run by. Christian. Corporations. Who care more about a theoretical unborn fetus than their patient.
Courtney: It truly does not matter what you say. They will not believe you. And they will make you pay for that distrust.
Courtney: I was just using that, in the article, as one example of ‘Hey, this has a real, financial impact, too. When we aren’t believed by our medical professionals.’ I said, and she quoted, “I’ve quite literally been sitting in my doctor’s office having difficulty breathing and urgently needing a lung X-ray to check for pneumonia while waiting on a urinalysis to come back and tell my doctors the obvious”...“It’s humiliating to not be believed by the people I’m supposed to trust to oversee my health, but it’s also tremendously expensive with all of these little costs throughout the year adding up”...“My disability has riddled my medical history with question marks, and not all physicians are prepared to diagnose or treat something so rare and underresearched.”...“I’ve seen firsthand how harmful it can be when doctors try to pathologize your illness when they’ve run out of ideas. I don’t want doctors to pathologize my illness, and I don’t want doctors to medicalize my sexual orientation, but I find that the two often go hand in hand. It’s exhausting.”
Courtney: It is, at this point, that the author...goes on to talk about some of the things we already mentioned earlier, in this episode, about...the DSM. About Hypoactive Sexual Desire Disorder. Then she goes on to leave off with a couple more...partial quotes from me. Stating, “Lane says they’ve ‘experienced burdensome biases from healthcare providers’ throughout their life, which has contributed to a ‘culture of distrust in medicine when it comes to patients who are women and/or exist within the LGBTQ+ spectrum.’” I personally thought it was beautifully said.
Courtney: That is not the end of the article! She goes on. It’s very nuanced. Very good. Talking about AVEN. Talking about the actual definition of asexuality. How it’s the invisible orientation. She even mentions...the book, “Ace: What Asexuality Reveals About Desire, Society, and the Meaning of Sex,” which is the book by Angela Chen. That I had just recently read– and also loved– as of the time this article came out. She pulls quotes from the book. She pulls quotes from an asexual woman, and a medical practitioner. She speaks a little bit to her own personal experience. This article. Was. Not. About. Me. And yet. An enormous part. Of the asexual community online. MADE it about me. Because, there were these...people with very large followings. There were...private Facebook groups, for the asexual community. Lots of people, who were reaching lots of people, were...sharing this article, with the caveat of “UGH! I wish. That woman didn’t have to go and talk about the urine tests! How dare she. She’s gonna give people the wrong idea. I really wish ace people would stop...giving people the impression that asexual people don’t ever have sex, because some of us do.”
Courtney: Some of these comments ended up getting very, very aggressive. Like I said earlier, “That bitch, talking about the urine tests!” Because, being the invisible orientation, the asexual community is so. Terrified. That outsiders are going to get the wrong impression. Of who we are. And what the definition of asexuality is. That if anyone senses even a hint of, ‘Oh, the allos might take this, and run with it in the wrong direction. Someone might not understand every single nuance there is about asexuality, because of this one person’s experience.’ We are absolutely prone to cannibalizing each other. And that is absolutely how I felt on that day. I started getting more and more DMs. More and more people, telling me that I shouldn’t talk about this. I’m going to give people “the wrong impression.”
Courtney: And then, since it did have...an international reach, I started seeing people in other countries who do have universal healthcare, who started accusing me of outright lying. Saying, “If you tell them that you’re not pregnant, they won’t make you take these tests!” Oh, trust me. I have tried that!
Courtney: I have absolutely tried that.
Courtney: Then it started getting very, very weird. And very personal. Where I would see entire threads...of people speaking...about me. And speculating on...my own medical history. I didn’t specify my actual diagnoses in this article. I didn’t think I needed to. But, apparently that was a mistake, because everyone started speculating, “Maybe she’s not really disabled. Or, if she is disabled, maybe she just doesn’t know how to represent herself to medical professionals. Maybe this is really her fault, for not talking to healthcare providers.” “Clearly she isn’t representing asexuality in a correct light, in this article. So, she’s probably misrepresenting herself to doctors, too.” “I’m on the doctor’s side. They should be doing this, ‘cause...’ It was...very, very weird. Because, in this whole article that I thought was very good– and was not. About. Me. Again, I was ONE experience of several mentioned here– why did it all boil down to me? I don’t think I said anything wrong. That is my experience. That is something that has happened to me.
Courtney: My brain was all over the place then. It still is now. Because, at the end of the day, I think the broader asexual community feels threatened. By disabled representation. I have NEVER once claimed. That asexual people never have sex. I have NEVER claimed. That you should never...
Courtney: ...give asexual people a pregnancy test. I was explaining, “This is my experience. This is one of my many experiences. That is costly. And humiliating.” And somehow, the ace community absolutely dogpiled on me that day. Perhaps, in part, because this article was...very large– it was widely read– perhaps that’s the reason why I got as much hate as I did? But, on that day? I felt so utterly, and wholly, rejected. From the asexual community. That I wasn’t sure I wanted to speak about these things...openly...anymore. Or really, be a part of this community at all. A community that didn’t seem to want me. Or value...my opinions, and experiences.
Courtney: And then...PRIDE Month ended, and July started. July, which is Disability Pride month, in case you were unaware. And so, right on July 1st, I saw the precise moment when my timeline was filled with happy ace content, LGBT Pride, “Everyone’s valid. Everyone belongs here.” And then, right on July 1st, I’m seeing “Yes, disabled people have sex, because we’re HUMAN!”
Courtney: Let me tell ya. That is jarring. Every single year.
Courtney: However. For as much as I felt like I was...done– I wasn’t going to do anymore in this space– on the day of that article, and the week following it...I was, shortly thereafter, offered a seat on the accessibility committee for...the asexuality conference. Which– this year– took place online, and in conjunction with World Pride in Denmark. In mid-August. An opportunity that I was...especially excited about. Because I thought I was...uniquely positioned to help. Make the conference. As accessible as it can be. Even though I didn’t have nearly as much experience in virtual spaces, my professional work in...history, and...artwork, and academics. I have been to many a conference before, and I know what has, and hasn’t worked, in terms of accessibility. Just, as it pertains to my own lived experience.
Courtney: I was also, of course, very passionate about making sure that...disabled aces are included...in ace spaces. That they have their access needs met. In order for them to be able to participate. I also have...a Royce! Who is...FAR more tech savvy...than I am. And is very much. An accessibility expert in...digital spaces. Royce, I think you are really cool case [sic], and a very good ally, because although...you don’t have any. Disability. Access needs, of your own. You’ve taken a lot of time and care to learn about them. And make sure that you...implement accessibility, in all areas of your own work.
Royce: Yeah. I’m a professional programmer. I generally work on front-end interface stuff. Several years ago, I was part of a larger company, working on their user experience team. I ended up learning about web accessibility, for a couple of different reasons. On one hand, if you start doing a lot of research into design. You will inevitably start to come across articles, or studies, that involve designing software for people with a variety of needs. Whether that is keyboard accessibility, or screen reader accessibility, or... I once read a really interesting article about designing websites for dementia. Which involves a lot of contextual information. Context clues, things like that, that you wouldn’t normally think of when navigating around a website.
Royce: It’s an interesting field. And it can get rather...vast, and intricate. Because there are so many different experiences to design for, when you’re talking about making something as accessible as possible. This goes beyond what we would think, as “normal,” diagnosable disabilities. There’s also, designing for...varying...educations. And languages. And upbringings. And cultures. It’s more about making things that are...available, and useful. To...people. In general.
Royce: When we started looking at AceCon. I believe the first thing you showed me was the original plan for the website, and the registration form that they were going to send out to people. I took a little bit of time to look over it. To run a few auditing tools over it. And noticed a few...fairly straightforward...accessibility issues. Which came from a variety of sources. From the...writing styles, to...language around time zones, to the infrastructure that being used [sic], that just wasn’t flexible enough to accommodate the audiences that it needed to.
Courtney: Yeah, absolutely. It should be noted that... There was some work going on, for the conference, before I got brought on to be a part of this accessibility committee. There were a lot of things that had already, preliminarily, been done. And that, long-term, ended up being part of...the issue. Having an accessibility committee is...vitally important. Either a professional accessibility expert, or a panel of disabled users from the community. Or both...
Courtney: ...is even better. Because of the fact that we were ALL volunteers. And we were all over the place. We all had very different skill sets, and some work already been done. It ended up being that, the accessibility committee was often put in a place of needing to...Say “no.” To things that were already done. Things that people had already spent the time to do. But they, themselves, were not on the accessibility committee. They, themselves, didn’t have these access needs. So people were producing content...that was not accessible...and finishing it! Which then put us in the position of needing to say, “We can’t use that.” That puts us in a very difficult spot, socially, when we know someone has worked very hard, and put in a lot of time to get things prepared. What I would’ve liked to see. What I would prefer to see, in any other accessibility committee situation, is that...the accessibility experts are...involved, in every level, of the creation of the content for these events. Then someone can point out when there’s an issue BEFORE all of this time is invested. And then we don’t have to feel like we’re the bad guys, saying, “Hey. That thing you did is not good enough. Do it again.” Or, “Let’s find someone else who can do this in a different way.”
Royce: Unfortunately, that’s what a lot of accessibility work ends up being. I...forgot to mention earlier. The other reason that I ended up learning a lot about the technical aspects of web accessibility, is because I’ve been a part of...more than one...company accessibility overhaul. Oftentimes, in a point of...technical leadership, if not design leadership, just from experience. It IS a lot of, “No, marketing. You can’t stylize your text in that way. It doesn’t matter if that matches the company’s brands, colors...there’s a certain percentage of the population that can’t see it.” Then it’s, “No, development. You can’t make controls in that way, because they don’t work on all the variety of devices that they need to work. It completely breaks the application for a certain subset of users.” To this day, I haven’t seen a C-level accessibility lead at any company. I don’t know if that role exists. But it does end up being something that gets shoehorned into a lot of projects. Either, because an individual somewhere starts championing it. Or, the organization gets hit with a lawsuit.
Courtney: Unfortunately, THREATENING them with a lawsuit...sometimes, is the only reason that they’ll...listen to you.
Courtney: Royce and I– working as a team– along with several other fantastic members of this accessibility committee, were...really trying to make this...conference as accessible as possible. I think it did, at the end of the day, end up being more...work, for you and I, than we...thought, it was going to be?
Royce: Well, yeah. You expected to just be involved in a handful of...accessibility meetings, to go over conference details. We ended up taking ownership of the website itself. I built and hosted that, based off of existing designs. We critiqued and help [sic] rewrite some of the...information that was being sent out. Were involved in a wide variety of internal chats. Did some auditing of other...tools and platforms that were...wanting to be used. It ended up being quite a bit.
Courtney: It really did. And then any of you listeners who may have been at AceCon, would have potentially seen me...speaking at the opening. Of the conference. About some of our accessibility measures. I also hosted the...panel on asexuality and disability. Which– mind you–
Courtney: ...this again. The ace community just...doesn’t really care about disability. I did get to see some community polling about events they would be interested in. And, let me tell ya. Content about disability and asexuality was LOW. Low, low low low. That was something that, when I saw the poll numbers come in for that, I had to say, “Please, please, please? Let’s still have–
Courtney: “– disability content at the conference, even though the community isn’t polling for it?” I can’t say I’m surprised to see...the interest so low. But that’s exactly why we need it!
Courtney: This is not, by any means...intended to be a call-out episode. So, I will be saying no names. Please don’t...ask around, or try to get any personal details. The individual experiences I had with other volunteers. Is not the point. I am totally saying this, just to illustrate the pattern. Of how...disabled people are treated in ace spaces. Royce mentioned that we did do a lot of auditing of other platforms. That was because this...was a virtual conference. Naturally, people wanted to try to emulate the in-person experience. Give people the ability to meet fellow aces, and connect with others. And there was one particular platform that– by the time I came on– seemed like it was definitely going to happen, no matter what. That they had already decided to use this platform. But it was...egregiously...inaccessible.
Courtney: The company was called, “Gather.” It’s like a little virtual space. You get a...little sprite character, that kind of looks like...an 8-bit video game...character, that you can control around in this virtual space. Then they use video chat, so you can actually see the face of the person you’re talking to, if you get close enough to someone. It is a really cute, and novel, concept. But...it is not at ALL accessible!
Courtney: Even before we had our...accessibility meeting. To discuss this particular platform. I had run an accessibility audit on it, to see what potential issues there...may be. We saw a LOT of them. There were buttons that...did not appear, to people who’d be using a screen reader, for example. Let alone the fact that...screen reader users could not navigate the space. On their own. Whatsoever. A lot of the issues we’re seeing, were...lawsuit-worthy...issues. Companies have been sued for...very similar– if not exactly the same– issue. We know that they are a direct violation of accessibility laws.
Courtney: I also noticed when I went on, that– Of their little video game characters. That you can pick when you go in. Which, you get no description, if you are on a screen reader. You are completely unable to get details about what your character looks like when you’re trying to select one. That was another issue. But– they had a few different sprites who...were using wheelchairs. They only had one sprite who’s walking with a cane – which is my most frequently-used mobility aid. Except, they made her a little old lady. With white hair, in a bun. And frumpy clothes. And...
Courtney: ...wrinkles! It’s like, [sarcastically] “Oh, that’s good. There aren’t any young people who walk with canes.”
Courtney: As part of this initial audit, I did pull up a screen reader. Now– full disclosure– I am not. A screen reader user. I know that I am very much an educated outsider, in that regard, when it comes to accessibility. The opinions of someone who IS a regular screen reader user is going to be a lot. More nuanced. With that lived experience. Than me. We did have a couple of different screen reader users on the committee. So I definitely wanted to run things by them as part of this. But, for my little preliminary overview, I did pull up a screen reader. Not only could I not click many buttons, and not “see” a lot of things, but...[jokingly] the screen reader insulted me! It called me “Old Female Courtney Lane!”
Courtney: Because “Old Female” was the description they gave the one sprite who had a cane. So that was good.
Courtney: Very gendered, as well. Every sprite was male or female. And it only told you that information AFTER you selected one. So you’d randomly select one. If you couldn’t see them yourself. Then, once you were actually in the space, and can’t move anywhere on your own. Then it would be like, “Male” or “Female.” Which was also not very great for...a queer-focused asexuality conference. We have a very large number of nonbinary folks. In our community. So that was also...adding one other little nuisance on a pile of accessibility issues.
Courtney: And so, naturally, as someone who was brought on as...a member of the accessibility committee, I explained, “This is not accessible. This is...horrendously INaccessible!” And...the response I got back from...non-accessibility committee members who are helping organize the conference was, “Yeah, but IS there something we can do? To make it work anyway?” Maybe this is my bad. Maybe, right from the start, I should have said no.
Courtney: But it really seemed like they were trying to make it work, no matter what. So I...tried to say, “The absolute. Very, very very least we could POSSIBLY do, is...have a team of volunteers.” You see, Gather has this thing called the “Follow” feature. Which, they designed with sign language interpreters in mind. Where, a sign language interpreter could have their own sprite that is...automatically attached to the person they’re interpreting for. So you can move about the space as a pair, and not get separated. With one user controlling both sprites, basically.
Courtney: While this would not have solved the problem– because there’s still the issue of getting in, and accessing the space, in the first place– I said, “Well. If you absolutely insist on still using this. We could have volunteers ready to, basically, be sighted guides. Who can use the Follow feature. But we need to have those volunteers on hand, if we’re gonna do this. And it’s still not ideal. There’s still issues.” That was very much me, just trying to be creative. Because I could tell that they were trying...to justify using this, by any means necessary. But then I kept adding, “We should be erring on the side of accessibility. We KNOW this is not accessible. If we proceed to use this service anyway, we know that we are excluding– and discriminating against– a certain percentage of disabled folks who would attend the conference. We know this. You can’t sugarcoat it. We would be willfully discriminating, because I have brought this to your attention, and you know this now.”
Courtney: So, for a little while, it seemed ‘Okay, we’re not going to use the service.’ We kind of dropped talking about it for a little bit. I thought it was all said and done. But then, just a couple weeks before the conference, someone brought it up again, and said, “Oh, yeah. Do we have a stance on Gather? Are we gonna use it, or are we not?” And I saw some people talk about, “Yeah, we are gonna try to use this.” Someone said something to the tune of, “It’s my understanding that we shouldn’t have any necessary parts of the conference there. But, if we just use it as a social space, then the accessibility committee thinks that that is reasonable.” I saw that, and I had to pop in. I said, “You know, I’m a member of the accessibility committee. Let me emphasize for you that NOTHING is ‘reasonable’ about this, by accessibility standards. It is not reasonable. No, it absolutely is not.”
Courtney: We kind of hit a compromise. I was given the permission to...contact this company. Royce and I, we’ve done some accessibility consulting before. Coming from our two different experiences, we work really well together...as a team...in that regard. So, we actually wrote up an accessibility audit. I got the permission to contact the company and say, “Hey, if you can’t make this accessible, we’re pulling out.” Because, I said– as well as other members of the accessibility committee said– we shouldn’t be giving our money to a company who...isn’t accessible. The response back we got from the company said, “Yeah, we know we’re not accessible! We’d like to eventually fix that. But we aren’t going to fix it by your conference time.”
Courtney: That was when the most frustrating...accessibility conversation happened. They took that information and said, “Okay, what do we do with this?” And a couple of different comments...stood out, to me. I was asked... ’Cause I said again, “My recommendation is, we do not use this. They aren’t accessible. They know they’re not. This is a lawsuit-worthy accessibility issue. And, disabled aces face enough discrimination. We need to make it clear that they belong in ace spaces, and we will make this accessible for them.” And I got a ‘Are you just saying that because of the email they sent you?’ Like, ‘Have you really been thinking about this the whole time, or did you have some hurt feelings?’
Courtney: I I felt...downright gaslit, in that moment. I was searching through two months of chat history, to see everything I ever put. In that group chat, about Gather. So that I could copy and paste them into this WALL...
Courtney: ...of everything I’ve said about Gather. How and why we shouldn’t use them. And it’s like, “Wow. No, I’ve made it very, very clear, actually, that I thought this the whole time.” I don’t know if it’s...because I’m disabled? Or, if it’s because I’m a woman? I don’t know if it’s ’cause I was the most passionate voice in the group chat? But...that didn’t sit right with me.
Courtney: Then the conversation became, “I’m worried that we’ve put so much work into this conference. And if we don’t use Gather, we’re not going to have as much value, and people aren’t going to have as much fun. A lot of our hard work will be wasted if we don’t use Gather.”
Courtney: I again...just kept making my point! Saying, “You are willfully discriminating. Against disabled asexuals, who might want to come. To this asexuality conference. Including...people who are screen reader users, like people who we have. On the accessibility committee!”
Courtney: Luckily, there were a couple people here and there, who were saying “Yeah, I thought it was pretty clear that the accessibility committee didn’t think this was okay.” It’s like, ‘Alright, a couple of you were listening.’
Courtney: But...then we got hit with the hardest one, that really, really...really got to me. Where someone said, “Even if only 99% of the people who come to the conference would benefit from using Gather. Isn’t that still better than NO one...being able to have fun on Gather?”
Courtney: They went on to phrase this as, “Oh, I know there’s a logical flaw. Before you guys get mad, and start yelling at me. I really wanna emphasize the fact that, this is a really difficult decision to make! Both outcomes are negative.”
Courtney: [mocking] Either. We discriminate against disabled people. Or. The abled folks don’t have as much fun!
Royce: The argument was particularly ironic when you consider that this was...an asexuality conference. It was a conference that was already. Being built around. 1% of the population.
Courtney: Right? We are the invisible orientation. The estimated 1% of the population in this conference is for us! Like, could you imagine...a PRIDE event, where people are like, “No. We’re not going to include...asexual folks. Because the asexual folks are gonna bring down the fun...
Courtney: ...of everyone else! So we’re just not gonna let ’em. ’Cause it’s better that the 99% of us have fun, instead of the 1–” Like, could you imagine?!
Courtney: The thing is, yeah, if you want to go to the utilitarian thought experiment of, “Everything here is a lose-lose situation. So, which lose situation actually benefits the most people?” The two are not equivalent. You can NOT use the utilitarian thought experiment when it comes to...human rights!
Courtney: One is, “Oh, the abled folks don’t get to hang out in this cool, novel, virtual space.” And the other negative is, “We are actively discriminating against a marginalized group of people.” The two are not the same!
Royce: But these arguments get brought up because the people making them are always a part of the...majority of that utilitarian argument.
Courtney: At the end of the day, a lot of things did turn out...relatively well. We did, at the end of the day, get a lot of things that the accessibility committee was gunning for. We did not end up using the inaccessible Gather. We did have a disability and asexuality panel. And, although there were some hiccups here and there, I think overall– given the fact that this was completely volunteer-run. None of us were getting paid. A lot of us were putting in a lot of time. And it was an international conference– overall, I do think it ended up. Very, very good.
Courtney: But...the people who attended the conference, and loved it, and felt so validated by it. The people who were thanking us for...taking disabled folks into consideration, and prioritizing accessibility. They don’t really. Know. Exactly. How. Hard. Several of us, disabled members of the community, had to work in the background. In order to make that happen. Some of it is purely time and energy, which will go into any volunteer effort. But some of it was also pushback from...abled organizers. Who don’t understand how...vital, accessibility is.
Courtney: And then there was the whole... Bear in mind, I was the one. Emailing Gather back and forth. I sent them the accessibility audit. I laid out our terms. Hell, I even offered, I was like, “If you want to pay us, we are accessibility consultants. We’ll whip this into shape for you!”
Courtney: “Here. Here’s our audit, for free. If you want more, you can pay us.” And they, of course, gave us the “We would like to be more accessible. As a response of your email, we’ve had company-wide meetings about how we’re going to implement accessibility, going forward.” And I sincerely hope...that they did actually change. The systemic way they were implementing these measures. Like they told me. There’s no way for me to know. I don’t work for them.
Royce: We haven’t checked back...in on their website.
Courtney: No, we haven’t checked back yet. But...then another organizer– whom I had not spoken with, directly, by this point– popped into the chat and said, ”Why don’t we have someone tell this Gather story at...the opening of the conference?” They said, “It would probably be good for people to know. All of the accessibility work we’re doing. Our decision behind not using this, since a lot of people thought we were going to.” And, since I was the one. Who initially ran the audit of Gather, and said, “No, this isn’t accessible.” I coordinated with a member of the committee who is a screen reader user, to try to...test, “Is there a way to make this work, if we have the right volunteers?” Since I was the one who was emailing Gather directly. I felt like I was the right person to do that. And so I said, “Yeah. Is that something you’d want me to talk about? I’d be willing to do that.”
Courtney: And...it wasn’t a resounding “yes,” either. It was kind of tone-police-y. It was kind of mansplain-y. ’Cause I said, “A lot of my activism revolves around asexuality and disability. So, I can not only explain what happened with Gather– why we made the decision we did– but also explain that we are prioritizing accessibility. And that’s the heart of this. Because disabled aces belong in ace spaces.” To that, they were like, [hesitantly] “Yeah, I guess you can talk? But you have to be humble about it.”
Courtney: [meekly] “You have to be humble, and make sure..that you say it right.”
Courtney: I was like, “What is not humble about saying we’re prioritizing accessibility?” I genuinely did not understand. And I never once said that I was gonna come out and be like, ‘I’m the one who did this! I did that. I did that!’ Not at all. My proposal was, ’I know the most about the situation, ‘cause I...did it.’ And I can say that the conference is prioritizing accessibility. It very much felt like, “Hmm. Are we sure this...disabled woman on the asexuality accessibility committee is the right one to talk about this?”
Courtney: That was the last, tiny little salt in the wound. But eventually, they agreed. And I did speak at that opening, as I mentioned. And...chaired the disability panel. On that Sunday.
Courtney: I guess we spilled a little more tea about that conference than I...intended to, when we started this.
Courtney: But I think, in having these conversations, it’s important to talk about– not only the discourse online, and the...attacking members of our own community for talking about their own personal experiences, but also– how anytime something is made accessible. How hard someone, who is probably disabled, is working in the background. To make that happen.
Courtney: I want this, also, to be a reminder to ANY. Asexual organization, or activist. Who is putting out ace content, or hosting ace events. To PLEASE. Prioritize accessibility. It is important. It is...often legally required.
Courtney: I hate that I have to say that. But, if you don’t wanna get sued, make your shit accessible! Because this conference was not the only asexual space, or event, that hasn’t been accessible. I’ve seen many of them before. Every time I see it, I try to make a point to...contact that person, or organization, and say “Hey. Please keep this in mind...” And– to their credit– many of them are very graceful, and do try to implement changes.
Courtney: But I...don’t want anybody to assume that their presence online is accessible. Especially if you have a website. Even if you’re using a website builder, like Wix. Don’t assume that, because you’re using a builder, everything is accessible. It is NOT. Immediately accessible. If you don’t personally have...the education necessary, or the...personal experience, with lack of access. Please know that there’s going to be a big gap in your understanding of this issue. And please. Seek out someone who can help you. Because disabled ace folks deal with so much...discrimination, and personal attacks, that...the last thing we need is to also be excluded from our online– and, for that matter, our physical– asexual and queer spaces.
Courtney: On that note, I think we’re going to end this episode right here. This is a vast and sprawling topic. No doubt, in the future we will discuss asexuality and disability more. But I hope that these last two episodes have been...illuminating for you. And if anyone out there– especially if you, yourself are a disabled ace– if you are interested in getting involved in future disability volunteer initiatives. If you’re interested in taking a leadership role in next year’s Disabled Ace Day, since we do want to make this an annual event. Please, feel free to reach out to us. You can tweet at us @The_Ace_Couple or you can email us at email@example.com.
Courtney: Thanks for listening, everyone. We’ll talk at you all next time.