Guest Post: Disability and Asexuality

Kaz is a German woman in her twenties, currently doing a maths PhD in the UK. She is on the autistic spectrum, stutters, and has been dealing with clinical depression on and off since her teens; she considers all of these disabilities. She is also aromantic-tending-towards-homoromantic asexual and identifies as queer. She blogged as Zailyn at WP for a while, but can now be found at either Dreamwidth or Livejournal, where she writes about fandom, disability, feminism, asexuality, and sometimes even maths.

Kaz’s note: First of all, this is not a 101-level post on either the asexuality or the disability side of things. However, I’m aware that asexuality isn’t really an issue that is on most people’s radars, so to anyone who doesn’t know much about it I suggest you check out AVEN in general and the Wiki in particular before reading or whenever you run into something that doesn’t seem clear.

Mod Note: Kaz & I talked and I’ve put in some links to terms as they come up.

A list.  The header reads: What is your Sexual Orientation?  Typed underneath with check boxes is Heterosexual, Homosexual, Bisexual.  Written in, with a hand-drawn check box, is other.  The check box is filled in next to other

Talking about the intersection of asexuality and disability is pretty difficult, because “asexuality” gets another meaning in disability rights discourse: it’s used to refer to the various stereotypes about disabled people’s sexualities. People do often seem to realise that this is problematic when it’s pointed out to them. However, what not so many people realise off the bat is that it goes beyond just “problematic”.

The stereotypes in question actually consist of a wide variety of things tossed together, some of which are in line with asexuality but many of which seem to have little to do with asexuality or in fact to be entirely opposed to it (I am interested to see how the stereotype of the disabled woman not saying no because she feels lucky anyone wants her is supposed to relate to asexuality, for instance). What they have in common, however, seems to be: denying disabled people their sexual agency and the right to make decisions or have knowledge about their own bodies and sexualities. The stereotypes about disabled people’s sexualities seem quite in line with the common tendency to consider us childlike, helpless and needing to be protected for our own good.

Asexual adults? Are not children. Nor do we (or, at least, should we) lack agency. In fact, the very existence of the asexual movement shows that we are in opposition to a lot of these ideas! We’re organising, we’re campaigning, we’re demanding that our sexual identity should be recognised and considered valid; disabled people are stereotyped to not have a sexual identity at all. (There is a distinction between the lack of a sexual orientation and a sexual orientation incorporating lack of sexual attraction that most people miss, but that is crucially important in this context.) Taking all the stereotypes disabled people get hit with regarding sex and sexuality and claiming that they all boil down to making them like asexual people? Like me? Is something I actually find really offensive.

An example: the desexualisation of disabled people often gets used to justify giving them less extensive sex ed or no sex ed at all compared to abled people. However, saying this is because they’re stereotyped as asexual entirely misses the fact that – asexual people need sex ed too! At the moment, it’s true that a lot of us will probably need it less than most sexual people, but it is still necessary as a large portion of asexuals do end up having sex at some point in their lives. Also, if mainstream comprehensive sex ed ever gets away from the “put the condom on the banana” “tab A slot B” style of sex education and starts talking about things like sexual orientation, explicit consent, how to figure out whether sex is the right decision for you at a certain time, etc. – I’d argue that we need this kind of sex ed more than many sexual people, as being a sexual minority tends to lead to more confusion and needing to figure things out. (There’s a traumatic experience I could have happily avoided if sex ed ran more in this direction.)

Also, using the name of my sexuality for these stereotypes obscures the fact that actually, they have negative effects for me, too. For instance, there is an astounding amount of ableism in the arguments people use to try and invalidate asexuality, ranging from “you should get your hormones checked!” over “that’s a disability, not a sexual orientation” to “you’re just all autistic!” You can imagine how the last one feels to me as an asexual autistic person! Worse, parts of the asexual movement buy into this and will talk about how they’re not autistic, their sexuality is valid – unlike mine, apparently?

…hey, I recognise this argument! But wait a minute, we can’t very well call it stereotyping disabled people as asexual if it’s being used to invalidate the sexualities of asexual people.

Finally, the usual rebuttal of disabled people to these stereotypes seems to be “hey, we’re sexual beings! We enjoy sex, we want to have it, you are entirely wrong!” My existence throws a monkey wrench into this argument, and monkey wrenches are not welcomed often. Also, because people use the same damn word for these things, my saying I am asexual in the disabled community can be interpreted as my affirming and reinforcing those stereotypes, which tends to make people rather angry. (And that’s not even going into how I used to buy into this and got to feeling quite guilty about daring to be both asexual and disabled…)

So I get hit by ableism in the asexual community and asexophobia in the disability community. Why, hello there, intersectionality, I hadn’t seen you for a while.

But what about outside of these communities? What specific challenges do asexual-and-disabled people face in their everyday lives?

This is the part where I start disclaimering everything because this is so very much due to my own experience and I can see that people with different disabilities or different experience of asexuality or in different situations would not have these problems, might have different problems that I don’t. Partially because of what I’ve just mentioned and partially because the asexuality movement is still very much fledgling and not many people identify as asexual, I really haven’t been able to speak to many (read: only one) other asexual disabled people about this.

But.

There is one huge, huge issue in my life that jumps out at me when I think about these things.

It goes like this. A lot of asexual people do not have the privilege of being able to assume they will meet a suitable romantic partner by chance, or in fact meet one at all.

As an asexual person, I need to ask myself: do I want a romantic relationship? If the answer is yes (in my case, the answer is “but how do I tell the difference between a romantic relationship and a deep friendship if you take out the sex part?” and a lot of confusion, but let’s roll with it), I have to consider: who would I be interested in romantically? (Women.) And would I be willing to compromise and have sex as part of a romantic relationship? (No.) Or would I be willing to have an open relationship, with the other partner having sex elsewhere? (I’m not sure about this one, but let’s assume no for now.)

So in my case, if I want a romantic relationship, I would need to meet a lesbian or bi female asexual /grey-a/other person who would be fine with never ever having sex. After some number-crunching, I have a rough estimate: about 0.1% of the population fit my criteria.

To compare, if we’re estimating a homo-/bi-/pan/etc.-sexual rate of 4% in the overall population (which is a conservative estimate), a sexual lesbian still has about twenty times as many potential partners as I do just looking at the sexual compatibility.

Um. This is not looking good.

And it gets even worse from here. Because 0.1% is derived from the “1% of the population is asexual” estimate – but most of these people don’t *know* they’re asexual, not in those words, because asexuality is so little-known and invisible that most people have never even heard of it before. If I am trying to actively seek out a bi or lesbian asexual, I’m going to have to stick with people who actively identify that way – which is far below 1% of the population.

David Jay at the Asexual Underground goes into this, and concludes:

Just to recap: all you romantic asexuals out there have two options. Either you can move to a major metro area, pour your heart and soul into building a meetup scene and with a little luck find one other romantic asexual in your approximate age bracket. Or you can get on AVEN, spend a huge part of your life working on building up the community, get elected to the admod team and somewhere between fights over warning policies find true love. Them’s the bones. Take ’em or don’t.

And, you know, both of these options sound just a wee bit difficult for people on limited spoons.

In fact, here is where I start talking about what disability has to do with any of this.

A lot of disabled people have difficulty living on their own and need some form of support and care. As far as I can tell, the single clear socially-expected-and-acceptable form of such care, apart from hired aides or family (both of these only for some disabilities), is the romantic partner.

Back to me personally. There are things that a romantic partner I was living with could do that would make my life a lot easier, but which are quite difficult to arrange with friends. These are not necessarily big things or things that would commonly be considered “care”; for example, one serious problem I have is regular meals, and having someone where it is understood that we will eat breakfast/dinner at X time together every day bar other issues would not only mean that I’d actually manage to eat regularly and more healthily, but also help with a lot of my other problems (my morning going awry can easily lead to my getting nothing at all done all day). This is to be expected for romantic partners, but more unusual for friends living together and pretty much unheard of for flatmates who hadn’t met before moving in. A routine in general would be much easier to stick to if there were someone acting as a touchpoint throughout parts of the day, and routine is both something I really need and something I struggle to put together. And more, and more, and more…

On various blogs of disabled people, I sometimes stumble across – the husband/wife did this. Or (if the partner is also disabled) I did this for the husband/wife. Small things, or large things. Helpful things. And I read that, and I think-

Chances are, I’m never going to have that.

I’m not honestly that upset about the relationship – this is why I say I’m more aromantic than homoromantic, and why people who identify as more romantic might have even more difficulties. Might even end up negotiating a relationship with a sexual person even if they identify as repulsed, which is something I want to avoid at all costs. But all the same I want, I need, the support and structure that living with a romantic partner could bring to my life.

Of course, the asexual community is trying to do something about the bleak outlook when it comes to ace-ace relationships. There’s a growing asexual online dating scene – sadly of limited usefulness if you’re looking for a relationship that’s not long-distance – and DJ has some really awesome and radical ideas about breaking down the boundary between romantic and platonic relationships altogether and completely redefining how we do love and emotional intimacy. Even if you don’t want to go that far, friends are often undervalued when it comes to these things. But setting up something specifically for the disability support a romantic partner would provide is something different from this, and something that would probably need a great deal of time and spoons that I can’t really spare.

Except that I’ll have to find the spoons somehow, because it’s not as if I have an alternative.

32 Comments

  1. Yes yes yes. This is an amazing post and thank you so much for writing it. I’m a disabled asexual and you really managed to convey a lot of my thoughts I’ve had trouble putting into words regarding disability and asexuality.

    I have to run right now I wish I could engage further. But I had to tell you thank you. Thank you thank you.

  2. “As an asexual person, I need to ask myself: do I want a romantic relationship? If the answer is yes (in my case, the answer is “but how do I tell the difference between a romantic relationship and a deep friendship if you take out the sex part?” and a lot of confusion, but let’s roll with it)”

    I am autistic and asexual as well. I do very strongly feel romantical attraction to people (I am in a long term relationship now), and always have. (When I was little, I supposed that when I was older, that would be paired with a sexual attraction, which never happened). I never had any trouble telling a deep friendship apart from being in love, though for a time I wondered if I was telling it apart, so I tried wanting to be in a relationship with some of my close friends, and it just never felt the same. The feeling that I have for my long term partner after the initial in love feeling wore off is also very different from a close friendship. It is romantic love (I have no better way to describe it) that is also not ‘in love’.

    Even considering that I am a woman interested in men and willing to have sex even though uninterested and with little to no sex drive, I am still somewhat amazed I really am in a relationship even after nearly 10 years. I doubted I would ever meet enough people to meet a partner, or to get beyond initial impressions: it can take months before I can even communicate effectively with new people; I don’t think I’m often considered ‘relationship material’. If I’d been interested in women and/or had to find someone who could be happy in a relationship with no sex, I doubt I’d be in a relationship now.

    “I have to consider: who would I be interested in romantically? (Women.) And would I be willing to compromise and have sex as part of a romantic relationship? (No.) Or would I be willing to have an open relationship, with the other partner having sex elsewhere? (I’m not sure about this one, but let’s assume no for now.)”

    I am romantically attracted to men. I am willing to compromise and have sex, since it is neither a good nor a bad experience for me, actually hanging more to good now, because I know my partner enjoys it quite a lot. The experience itself is quite neutral to me. It probably wouldn’t work without that either, since my partner has, as far as I can tell, more sex drive than most. I once asked if he would be willing to not have sex at all. He is willing to try if I ever want that, but he doesn’t know if it would work, and he can no more help wanting (I think needing would be a better term) what he wants than I can not wanting it, or rather being uninterested. For him, sex is as essential to romantic love as it is completely unrelated for me. As it is, he probably has a lot less sex than he’d ideally want, and I probably have quite a lot of sex for someone who is really not interested, but it works well for us this way.

    “A lot of disabled people have difficulty living on their own and need some form of support and care. As far as I can tell, the single clear socially-expected-and-acceptable form of such care, apart from hired aides or family (both of these only for some disabilities), is the romantic partner.”

    It is so acceptable here, that I am not eligible for a lot of services I need just because I live with a partner. As it is now, a lot of things just don’t get done, or we can get family to help now and again. If my partner actually had to do all this stuff (besides that he might need some training), I wonder how good that would be for our relationship. As far as I can tell, what partners/spouses are expected to do for disabled family members goes far beyond what any one person should be doing without help from others. It changes the relationship dynamics in a bad way.

  3. Thank you for this. I do not identify as asexual, but a lot of the things you said struck a chord with me as a single disabled person (and someone who is likely to be single for a long time). I feel that the sex positive community has really dropped the ball around incorporating asexuality as a legitimate sexual identity.

    Lately I have had a huge issues with the prioritizing of people we are in sexual relationships with over other relationships in our life. A very good friend’s father died recently and her boyfriend and I flew across the country for the funeral and her family had a difficult time conceptualizing our relationship. They were so happy to meet the boyfriend but with me it was like, “who are you?”.

    I think it ESPECIALLY important to point out that when we prioritize sexual relationships we are also (often unconsciously) reinforcing the importance of being sexually attractive to others which also reinforces the “traditional attractiveness” hierarchy. Those of us fitting the white, thin, able bodied (or at least appearing so), clear skin etc. will have the most agency when selecting partners and therefore more opportunities for finding someone to help them do the things that “only a partner can do”. While I am happily fat and know that there are many many folks that find me attractive, these people are fewer than if I were thinner. So if I am at a party and there is one person that wants to date me then either I like them or I don’t, but if there are TEN people that want a piece of this the odds are greater that one of these folks will be someone that I would want to date. Does this make sense? I feel like we don’t talk about how this focus on sexual relationships reinforces traditional beauty standards.

    I realize that I am not talking about asexuality directly, though I feel that this is tangentially related. If this is meant to me a space for more direct comments on asexuality please feel free to delete this comment. Thanks.
    .-= KatieT´s last blog ..Just Saying =-.

  4. Oh wow. I try to be an ally to asexual people, and as a disabled person have encountered the “disabled people are treated as if we’re ‘asexual'” thing but until now never thought to consider them at the same time and realise how problematic the latter is. Nor to frame the “that’s a disability, not a sexual orientation” argument in terms of disability rights . Duh.

    I rely very much on my romantic partner for support and it had struck me how difficult my life would be if I was single, but hadn’t considered how this specifically affects asexual disabled people.

    Hmm. Much food for thought, thankyou!
    .-= Sophie´s last blog ..On the posting of prompts =-.

  5. To all comments so far: You are awesome. I mean it. 🙂 I think it’s the nature of the beast that being asexual + disabled can make you feel as if you are entirely alone with this particular intersection (which I again blame on the whole using-it-for-negative-stereotypes thing which makes this kind of difficult to talk about), so seeing fellow asexual disabled people pop up in the comments has really made my day. And eeeh! Allies! 😀

    I shall respond more in depth tomorrow – I particularly want to address the point Norah raised about how it’s not a /good/ thing that the romantic partner is also supposed to be the primary care-giver for a disabled person, which I agree with! but forgot to point out in the post, oops – it’s just that it’s currently, er, 1am. Oops. I just really want to say thank you so much.
    .-= Kaz´s last blog ..You are now looking at an Officially Official Aspie (TM) =-.

  6. Good post, Kaz.

    I’m also a mostly-asexual autistic woman (I say “mostly” because I *DO* have sexual feelings/desires sometimes, they’re just extremely rare and generally not very strong), who can fall in love with/be attracted to people of all sexes.

    For me, having a male partner with a much higher sex drive than I have, opening the relationship up made a lot of sense. We chose to go the polyamory route, though, adding a third long-term partner to the relationship (as well as leaving it open). This obviously isn’t going to be the right answer for everyone, but it’s working more or less okay for me. It solves the “OMG, my partner likes sex and I … don’t, so much” dilemma, and it also widens my support network at the same time.

    KatieT and Norah, I think you’re both on to some important things about our society’s valuing monogamous sexual relationships higher than other relationships. Katie is right that this unequal valuing puts a lot of pressure on (mostly) women to be conventionally attractive, and Norah is right that it puts huge amounts of pressure on people, once partnered, to try to fill their partners’ every need. I think this form of social organization really isolates people, and also demands more from them than most can (or should) give.
    .-= Lindsay´s last blog ..Halloween =-.

  7. Yes, thanks for talking about this. My disabilities make sex near-impossible for me, but I am not asexual. I strongly desire and want a sex life, I’m just not capable of it for a whole slew of mental and physical health reasons. When I first learned about asexuality, I read more about to see if it fit me, and it doesn’t, of course, but there are ways in which I can relate on a few specific issues.

    Anyway, my month-away-from-nine-year relationship recently broke up, and I’m in now in that singlehood situation of wondering what my chances are for finding someone who I’ll like and want to be with who likes and wants to be with me and who will be okay with all of the stuff that makes me different – disabilities of varying types and all that goes with that, etc. And especially the sex thing. Because it’s entirely possible that I’ll never be able to have sex (and even if I eventually can, it will be difficult and painful and include lots of work from all parties involved – wheeee), and I’m sure that would make many potential mates a bit wary. Perhaps I should be seeking out someone who is asexual?

    And WOW am I rambling off topic here.

    To get back on it, yes, not only should disabled people not be de-sexed by others, but they certainly shouldn’t be labeled as asexual unless they also happen to be that. In my situation, for example, I could see someone throwing the asexual label around for me for various reasons, but it wouldn’t be true for me, and that diminishes both the identity and community of asexual people AND the many people who have disabilities that affect their sexuality. Being scared of sex due to PTSD, dissociating when things get sexual, being unable to have intercourse due to vaginismus, being grossed out by some sexual acts due to OCD, being on various medications that decrease my already low libido, and having to balance the needs of many physical symptoms such as back pain and dizziness and balance problems, inflexibility, etc. just does not equal asexuality. Much Less all of the disabled people out there who have much fewer or even NO restrictions on their sex lives.

    “Also, using the name of my sexuality for these stereotypes obscures the fact that actually, they have negative effects for me, too. For instance, there is an astounding amount of ableism in the arguments people use to try and invalidate asexuality, ranging from “you should get your hormones checked!” over “that’s a disability, not a sexual orientation” to “you’re just all autistic!” You can imagine how the last one feels to me as an asexual autistic person! Worse, parts of the asexual movement buy into this and will talk about how they’re not autistic, their sexuality is valid – unlike mine, apparently?”

    And yea. Wow. So, because you are asexual there must be something medically wrong with you? Coming from a chick who does have something medically wrong with her in regards to sex, I can confirm these are NOT the same things!

    … and I’ve lost any coherent thought I had left, so ending this comment now. 🙂
    .-= Rosemary´s last blog ..Transphobia is Wrong =-.

  8. I think I’ve always felt less alone than a lot of other disabled people because so many in my family share not only my disability(ies), but also many specific experiences thereof and other related things. Like I’ve always suspected that my mom was ‘like me, not interested in sex’ (that was before I learned of terms like asexual), and recently she confirmed that (we talk about pretty much everything, which is awsome, but the lack of other such people in my life worries me: my network apart from my parents and siblings is next to non-existent).

    And I forgot to say this in my first comment but I really wanted to:
    I get so sick of people telling me that I’m not interested in sex or don’t have much of a sex drive “because [I]’ve never experienced really GOOD sex.” “If you try [this or that technique] or just take more time for it [Yes, when I do have sex and get to an orgasm myself it already takes some 5 hours, thank you] or find the right partner who is better at sex, then you’d love sex and want it way more often!”

    (Aside from having nearly no sex drive, when I do ‘have sex’ myself, something is “not normal” too. It takes me immense amounts of time and all that time intense concentration to experience something the majority (not actually sure about that but it comes across as most people) of people seem to get to with no special concentration and much less time. I also seem a lot less impressed with the eventual result than, for example, my partner with his. I consider it mostly to be way too much hassle for too little result and would rather not bother with it and let the feeling pass again. I can come up with several sensory (skin) experiences that I enjoy at least 10 times more (even though I generally do not like to be touched), they’re just not sexual.)

    Or the ones who ask, very sympathetically, what kind of traumatic sexual experience I have had in the past to cause it.
    .-= Norah´s last blog ..I’m the world’s most irregular blogger! =-.

  9. Hell YES thank you so much for writing this!!! Although I manage most of my life pretty well without explicit physical help most of the time, the overarching “Who will be around when everyone else has paired off?” bugs me for forever, particularly as I don’t even really want a romantic partnership, but I still want, you know, human companionship and not to be forced to live on my own. It is so troubling, and so unresolved.

    The only “solution” I know of is to try to have many, many, many very good/understanding friends, and it is not like that isn’t ALSO largely chance and requires a lot of effort.

    It has been a while since I have been on AVEN, I will have to check it out, thank you.

  10. When I first discovered that asexuality applied to more than just things I forgot from high school bio, I was excited. This sounded like me.

    I’m not a social person, and don’t like having too many intense friendships. A “relationship” whatever that means, is out of the question at this point at time.

    I have had many crushes, and drool over many attractive movie stars.

    I’d be comfortable identifying as asexual, but I don’t fully know if it’s true. Plus, I’m young. And I worry.

    My biggest health problems started when I was 13, right around/during puberty. What has all the medication and surgery done to my sex drive? Did it ever exist?

    That aside, I like the asexual label because it drives out thoughts of, “You’re in college. Why are you a virgin? Why don’t you date?”
    .-= Kaitlyn´s last blog ..It’s so nice when one pic sums up your day =-.

  11. I can relate to a lot discussed in the post and comments. I don’t want to go into too much detail for my boyfriend’s privacy, but I’ve had the issue of not knowing what’s the difference between romance and deep friendship. At first, in fact, we only got in the relaitonship because neither of us knew what it is “supposed” to be and we could find out together. My attitude towards sex/intimacy in general is pretty much that if he wants something, I’m neutral about it and will see if it’s enjoyable/aversive/inbetween, and if it’s enjoyable I may take the initiative to do it. I have been called “asexual” for this reason, but I don’t care about sexual orientation labels really. (By the way, why is it a problem to lack a sexual orientation?)

    As for supports received from a partner, I actually felt very anxious about the possibility that I would be entering a relationship in part because of the need for care, and I actually wouldn’t want my boyfriend to be my care provider. Like Norah says, however, it is assumed that if you live together the nondisabled partner will provide care to the disabled partner. This is a major reason for me not to want to live together with my boyfriend unless/until I can deal with little enough help that my boyfriend could provide it without being a serious burden. (Of course, he is already making “accommodations” for my disabilities, but these are not like formal support.)
    .-= Astrid´s last blog ..The Demise of Individualized Care =-.

  12. Finally mustered the spoons to read this post properly! I have nothing to say except thank you for writing, Kaz. 😀

  13. Good post, Kaz.
    .-= Sasha_feather´s last blog ..Quote =-.

  14. Although this is a little too long for a blog post, it makes several excellent points. I think this is one area where Asexual groups and Disabled groups should meet and discuss how to change both the perceptions without making unwarranted assumptions.

    I’m sure I’ve done it, and you’re welcome to read the post I did on the subject, although I was not very happy with it personally.

    Basically, the entire point of this is we need a valid way to seperate asexuality from being listed as a disability and a part of many mental illnesses, and affirm that disabled people, like the rest of the population *can* be asexual.

  15. Thank you so much for this post! I’m glad to know that I am not the only person who is disabled and asexual, and who thinks about issues regarding disability and asexuality. Kudos!

  16. Once again, thank you to everyone who’s commented! It’s so great to hear that there are other people who have thought about this as well and I’m not alone in the world. 🙁 Also, because I forgot to mention it, I’m really interested to hear how other ace disabled people have experienced this intersection.

    …god, I write a lot. Splitting this into two parts; mods, if it’s still too long, just hit me or something. >>

    @ Norah: *nods* I get that – some people having a clear sense of romantic attraction, I mean. For me it’s quite confusing because it’s clear I feel *something* for women that I don’t for men, that I want to form very intimate relationships with women in a way I don’t with men, but have trouble fitting this desire in the usual framework of romance. And I don’t know how much of *that* is because the usual framework for romance is for heterosexual relationships, and how much because it’s not really romantic.

    And, I do agree that the partner/spouse being expected to provide huge amounts of care makes for a bad dynamic and can ruin the relationship – I didn’t know that about people not being eligible if they live with a partner, that’s awful! I forgot to add that the system as it stands *sucks* for more than just people who’re probably not going to have a romantic partner.

    And re: your second comment, believe me I entirely sympathise on the unhelpful unthinking comments people sometimes make…

    @ KatieT: Ohh don’t get me started on sex-positivity. I used to identify as sex-positive, then stopped when I realised that every time I saw those two words together I flinched and mentally prepared myself for attack. I still hold a lot of the beliefs ascribed to it, but the movement itself can just bite me.

    That’s an excellent point about how the focus on sexual relationship reinforces “traditional attractiveness” – I hadn’t thought about that before, but it does make perfect sense. It would also reinforce objectification, as that’s built on the whole idea of sex being the ultimate goal and the only purpose in a relationship for men being sex.

    @ Sophie: Glad I made you think 😉 I get the impression that a lot of people realise that asexuality is a valid sexual orientation, but don’t put this together with the “disabled people aren’t asexual!!” thing, or don’t realise that the way asexual is used in the second case actually makes it kind of offensive for actual asexual people.

    @ Lindsay: *nods* To be honest, I think polyamory probably solves a lot of problems for asexual people in romantic relationships – but at the same time it’s not a solution everyone can be happy with, both on the sexual and the asexual side. And, yeah, I totally agree on how monogamous sexual relationships are valued hugely over anything else; I think that any intimate relationship I ever end up in will look more like a very close friendship than anything else, so it’s frustrating that that kind of thing isn’t considered valid.

    @ Rosemary: *nods* Yes, that’s another excellent point! Although exual people who /can’t/ have sex or have difficulties having sex on account of their disability may find helpful things or things they can identify with in the asexual movement, they’re still not asexual and calling them such does a disservice to both disabled and asexual people. (In fact, one of the things that frustrates me in dialogue about asexuality is related to this – namely, “but isn’t that a symptom of X medical disorder?” when, in fact, it isn’t – *low libido* is. So many people conflate asexuality and lack of libido and these two things are not the same although a person may be/have both.)

    And much sympathies on your situation 🙁 I worry sometimes that our going “we’re asexual and happy and please stop badgering us!” is disappearing the concerns of people with genuine sexual difficulties because of the conflation that goes on.
    .-= Kaz´s last blog ..You are now looking at an Officially Official Aspie (TM) =-.

  17. write as much as you want, kaz!! we would not and will never hit you! 🙂

  18. Oh yeah, something else I wanted to add: I agree that expecting care from your romantic partners can turn things rather awful. However, some of the things I *desperately* need are things that wouldn’t really be considered care, or in fact unusual at all for romantic partners – see also, eating breakfast with them.

    @Laura: Yes, I tend to view the future with mild dread myself. What happens when it’s no longer usual to live with a flatmate, when I’ll have trouble finding one? And hell, I have trouble getting the support I need even *now*. Friends are an option, but it is difficult and – like romantic relationships – expecting care from your friends can poison the relationship. 🙁

    Just as a warning regarding AVEN: I don’t frequent the forums anymore after something of a kerfuffle earlier this year, in the course of which some very hostile things got said regarding repulsed ace people (by *a mod* to boot), and I’ve heard someone else grump about anti-sexual sentiments on the forums. I still think it’s a brilliant resource for some things (especially sexual people trying to learn about asexuality) but I can no longer recommend it whole-heartedly.

    @Kaitlyn: Personally, I am a great fan of picking whatever label feels right for you at the time and using it for as long as you get anything out of it. I mean, even if you develop sexual feelings in a few years, your feelings *now* are still valid. And even if your lack of sexual desire is because of medications/surgery/etc., that doesn’t really change the fact that you face the same challenges a “naturally” (whatever that means) ace person does, you know? I mean, it’s entirely possible that the “reason” I’m ace is because I have touch sensitivity issues because of autism that makes most touch feel rather unpleasant, and that if I weren’t autistic I’d be sexual – but I really don’t see the point in that distinction, or acting as though this makes me “less” asexual than a CA asexual.

    Gah, I’m not really making much sense here, and I don’t want to come across as if I’m pressuring you to ID as asexual. I just hate the thought of someone going “oh, but I might not fit this strict definition” when it comes to a label that they could find really helpful. And there is nothing wrong with being a virgin or not dating at any stage in your life! I’m not planning to change #1 ever myself and am dubious about #2.

    @Astrid: This is one people may be divided on – and I’ve seen other asexual people with different opinions – but for me the main issue with “lacking a sexual orientation” is that I think it easily leads to people being desexualised entirely and their being ignored whenever anything sexual is brought to the table. And although asexual people don’t experience sexual attraction, we still need to be considered in things like sex ed, models for consent (don’t get me started on enthusiastic consent), etc. It just seems to me that saying “oh yeah, these people don’t have a sexuality/sexual orientation” makes it much easier to dismiss our experiences as irrelevant and not needing to be considered.

    Also, I’m not *nothing*. I’m asexual. I do, actually, have a fully developed sexuality, with things like fantasies and kinks for erotica reading that I won’t go into here because that’s way too much TMI, all of which tie neatly into the fact that I, myself, am not interested in having sexual contact with any person ever. My life doesn’t feel as if someone has surgically removed my sexual orientation, it feels as if I have one that fits in with the rest of myself – it just isn’t what people usually consider a sexual orientation.

    @Shawn: *looks at what she’s written so far* …yeah, I meander. A lot. I’ve given up trying to curtail it, because trying to edit it down to size actually means I end up adding in more and it becomes an exercise in frustration, and because I’m actually quite sure my tendency towards ginormous posts are due to my disability. *shakes fist at the ableist neurotypical tyranny!!! ;)* Thankfully the FWD people let me post it in full!

    I agree that the conflation of disability and asexuality is something both sides should work against; I do however think that it’s important to keep in mind that the way disabled people are stereotyped often has little to do with asexuality although it’s given that name.

    @Everyone: thank you for commenting! 🙂
    .-= Kaz´s last blog ..You are now looking at an Officially Official Aspie (TM) =-.

  19. Thanks, abby! I am not kidding when I say the way I can’t write short posts or comments may be due to AS; when I was in for diagnosis the assessing clinician suggested that I had weak central coherence, aka “cannot see the forest for the trees and on top of that every tree is equally important and worth pointing out”. I’m not that fond of the theory because it presupposes that the way I think is bad and the details I consider important are somehow objectively irrelevant (see also: ableist neurotypical tyranny) but I do have a lot more trouble summarising things than most people. So. You know. It is very much appreciated! 🙂
    .-= Kaz´s last blog ..You are now looking at an Officially Official Aspie (TM) =-.

  20. i do a lot of that too – i always try to make every detail or ambiguity clear so there’s no possible misinterpretation and then i’ve written half a page and i don’t even know what i’m saying. pressing ‘approve’ is a pretty easy way for us to be accommodating and we’re glad to do it! this post and thread have been fascinating to read – i’m all for lots and lots of fabulous content!

  21. Yeah, you’re not getting any guff from me about the length of things! I’m often accused of being verbose. (My favourite negative review: “Never has someone missed the point so extensively, so completely, and so verbosely.”)

  22. “And, I do agree that the partner/spouse being expected to provide huge amounts of care makes for a bad dynamic and can ruin the relationship – I didn’t know that about people not being eligible if they live with a partner, that’s awful! I forgot to add that the system as it stands *sucks* for more than just people who’re probably not going to have a romantic partner.”

    Yeah, and it goes for friends and family too. I don’t know if it’s everywhere that you are barely eligible for any services if you live with a partner (or family, or anyone you form ‘a household’ with- regular roommates that you don’t form any sort of family with do not count), but it’s the case here. Recently, they’ve just begun building the first housing projects (that I’ve heard of) where autistic people can have assisted/independent living (i.e. not group homes or institutions in a ‘clever’ disguise) *with a partner*, until now it was all for single people. That’s nice, but it won’t do much good if we’re still not eligible for the services: very very few of us would be able to pay for it out of pocket (1: you’d need to be employed, 2: you don’t just need to be employed, you need to be so far above a modal income to be considered rich).

    And yeah, a lot of stuff your partner can do for you isn’t really care as usually recognised and wouldn’t cause much stress in the relationship either. And if I were single then I’d be missing out on that, because a lot of that isn’t stuff that would work well being done by a stranger even if I could hire them for it, at least for me. Neither situation is very appealing, really, if you look at it from the outside, but then again when you’re in it it often seems “Well it’s not like I’m miserable like this…” Like I am happy living together. Sometimes I think about all the stuff I could get help with if I were single (not living together would pretty much end up as an end to the relationship, we’re both ‘out of sight, out of mind’ people that need very frequent contact), but as it stands now, I’m not willing to trade (which may change, of course). Though of course mostly I want to be able to get services AND live together. Not seeing that happening in my lifetime really. Maybe when I’m in my 70s?

    But I think I’m derailing the topic there.
    .-= Norah´s last blog ..I’m the world’s most irregular blogger! =-.

  23. Kaz, you said: “And much sympathies on your situation 🙁 I worry sometimes that our going “we’re asexual and happy and please stop badgering us!” is disappearing the concerns of people with genuine sexual difficulties because of the conflation that goes on.”

    I don’t feel that way. To me, there’s a pretty clear difference between “I’m asexual and happy so don’t fret about it please” and “I have difficulties with sex and it rather sucks”. Anyone who can hear those two things and not get the difference is just not paying enough attention, you know?
    .-= Rosemary´s last blog ..2009 Fall TV =-.

  24. Kaz – my lengthy verbosity was used against me once. In APEX (the “smart” kids got to leave class and have fun from 3rd-6th grade. Most people in APEX went on to “advanced” or “honors” classes starting in 7th grade, but not all people in “advanced/honors” classes were in APEX) in 4th grade, my teacher gave me writing prompts and told me to stay within a certain page limit.

    And in one of my high school classes, I had a reputation for writing a lot. In another class, earlier that year, we’d had a page limit for our research paper. So when the other teacher mentioned the pages required, I had to ask if it was a maximum. So he told me only I could turn in 10 page paper. (It was only 8 and a half. So sad.)

    And then in my Modern Middle East Class this semester, the woman who sits next to me got points off for going over the pages required!

    Kaz, your response does make me feel better. I don’t know, sometimes it seems that you have to pick something and you can’t change your mind! (Like the issues bisexuals face – there’s a tvtropes page called there are no bisexuals, or something similar.)

    But I meant what I said. Finding out about asexuality was a huge relief, just like finding this blog. (And nattering away in the comments about unrelated points.)
    .-= Kaitlyn´s last blog ..It’s so nice when one pic sums up your day =-.

  25. Just wanted to comment, that I appreciated this post, and it made me really think about this specific type of intersectionality for the first time. I am a woman, I identify as bisexual and gray-a, and am in a long-term romantic polyamorous relationship. I don’t think I fall into the PWD spectrum though, or let’s say I don’t know if I do – I’ve only recently started reading about disability activism and the whole issue is very new to me still.

    I’ve been clinically depressed for years, but at the moment I’m not. I’ve also suffered from a panic disorder, and although I don’t currently have full-fledged panic attacks, I think my proneness to have them never really goes away (or it hasn’t gone away so far). I’m always aware that I may have a panic attack in certain situations, and while I now rarely do have an attack (an it’s likely to be mild), I still make some accommodations for myself. I don’t really need anyone else to make accommodations for me, and I know this propensity of mine is completely invisible 99.9% of the time, so I guess it doesn’t make a disability. At least I don’t feel it does, for me.

    (The logic here is maybe not very good, because I know not all PWD need others to make a lot of special accommodations for them, and that some disabilities are invisible 100% of the time.) (When the panic attacks were bad, I guess I would have counted them as a disability then, because they sure prevented me from doing a load of things. I just did not know about disability activism back then.)

    However, I’d like to be a good ally for people with disabilities, and I was really interested in this whole talk about sexual relationships being valued above all others / polyamory as a potential solution for some people etc. And (please don’t take this the wrong way!) if we knew each other, and if you happened to be interested in me, and if I were interested in you, none of your “issues” would be issues. I mean, I’m a bi female willing to go without sex and I even think mathematics is very cool. 🙂 I’m not trying to hit on you, though – I just wanted to give you some explicit encouragement that there must be people that you could be partnered with very comfortably, in case you both liked each other. With some luck and effort, you may well find a wonderful relationship.

    Not that being in a relationship is the most important thing in the world. And not that it would validate your existence, or your sexuality, or anything like that. Although I can totally understand why you would want some of the routine and care that a relationship brings. When I was depressed, it made a huge difference that I was living with someone and “had” to eat more or less regularly etc. I would have been much worse off without that routine, and yet it did not “cost” my partner any extra effort, as he would have eaten regularly anyway. (Of course my depression taxed him in other ways, but not in this specific thing.)

    I feel I’m rambling now, and somehow I’m not even sure if I should be commenting (as I don’t feel I’m on the PWD spectrum), but thank you for your post and please try to stay positive about the whole relationship thing! And good luck on the activism front, if you decide to go there!

  26. Just wanted to add that I read my comment and it seems I wrote an awful lot about ME ME ME before getting to the point. I just felt like I had to explain that I don’t identify as disabled, for fear of giving somehow wrong impression… But at the same time I wanted to convey that I might have identified as disabled at one point, and that’s what made your post about asexuality and disability extra interesting for me. Sorry for all the rambling!

  27. I’m sorry it’s taken me a while to read your post, which did chime with my own experiences as a PWD and also asexual. (I’ve been struggling with a lack of spoons lately.)

    I was interested in what you had to say about needing a structure to the day, that things go wrong if the daily structure is knocked out of kilter for any reason. That’s so true for me, too.

  28. Yes—for a long time I’ve been meaning to get back to this post when I had the energy to engage with it. The short version is THIS THIS THIS.

    I’m not asexual, but due to various things, such as being queer and non-monogamous and kinky and antisocial and picky, having sexual “dysfunction” (I’m not dysfunctional, cis-hetero-patriarchy is!—but just try telling that to a doctor), the well-known side effects of SSRIs, etc.—I am functionally asexual most of the time. And I’m cool with that, mostly. (I am having to figure out queering celibacy on my own.)

    But when I’ve been able to live with a romantic partner, it helps SO MUCH with disability. Just simple things like them waking you up in the morning and making sure you eat something. Having someone around who will notice shifts in your mood that you may be oblivious to. On the other hand, in my experience, this blurring of love-relationship and caregiving can really fuck things up. AUGH!

  29. The AVENwiki links aren’t working for me, I just get this error:

    AVENwiki has a problem

    Sorry! This site is experiencing technical difficulties.

    Try waiting a few minutes and reloading.

    (Can’t contact the database server: Can’t connect to local MySQL server through socket ‘/var/lib/mysql/mysql.sock’ (111) (localhost))

  30. Shiyiya, I got the same error when I checked, it looks like the site is having technical difficulties!

  31. Awesome post! I’m also asexual, on the autistic spectrum, and have been dealing with depression for awhile. You’ve put so many of my thoughts into words a lot better than I could have done.