Standing on the corner of disability and asexuality, watching all the activists go by
This is my piece for the October 2013 Carnival of Aces, Disability and Asexuality, hosted at Yes, That Too They are still calling for submissions and I will link to the actual carnival after it goes active on October 31.
Standing on the corner of disability and asexuality, watching all the activists go by
I’ve been standing on the corner, watching activists go by for several decades now. Actually, mostly I’ve been sitting on a couch reading the activists’ books, pamphlets, blogs, message boards and tumblrs. Occasionally, I’ve spoken myself, written myself, even picked up a sign or two myself. And I’ve advocated from within the system, speaking up when relevant. Just this past week, I presented to my department of child developmental disability specialists about aspects of gender and sexuality that are relevant to our practice. And as I put my thoughts together, I realized that talk about disability, and talk about sexuality, have been going through phases.
Phase 1) Disability visibility
I read a lot about disability growing up, but not much activism. I read children’s non-fiction about specific disabilities and about disability in general. I read biographies, parent memoirs and autobiographies. I read the disability sections of adult books such as Dr. Spock and the Boston Children’s Hospital health encyclopedia. I read disability fiction. Many of these books I read multiple times.
But it wasn’t until college I discovered adult disability activism, through a combination of books in my college library and pamphlets from a pile in the disability coordinator’s office. John Hockenberry’s Moving Violations. Nancy Mairs’s Waist High to the World. Joseph Shapiro’s No Pity. And the pamphlets from the Disability Rag, before Ragged Edge online was a thing, because online was barely a thing.
And they all pushed back against commonly held assumptions about people with disabilities. We don’t always need help. We aren’t children, so talk to us, not our companions. Don’t say wheelchair-bound. Don’t pat wheelchair-users on the head. And by the way, we aren’t asexual.
They meant, of course, that people with disabilities aren’t necessarily asexual. People with disabilities should not be seen and treated as perpetual children, incapable of adult relationships and, well, relations.
Pushback against society assumptions about disability is sorely needed. An adult with a physical disability told me last week that she has been approached in public to ask if she can have sex, and if so, how. Parents of children with developmental disabilities look at me in confusion when I point out their child may someday date, fall in love, have sex or even parent. Children receiving special education services do not always get the sex ed provided to their non-disabled schoolmates.
But as the years have gone by, and activism has moved from brochure to blog, the message continues, “we aren’t asexual.”
Leaving some of us to say. . . but. . . some of us are!
Phase 2) Asexuality visibility
“Asexual” was a term I heard applied to amoebae in the 1990s. Amoebae, paramecia, some forms of yeast, but never people. Still, when my college friends and I applied it to me in 1994, it made a lot of linguistic sense, compared to the terms heterosexual, homosexual and bisexual. In a similar vein, I had already described myself as adextrous instead of ambidextrous, as I use both hands equally badly. It was around this time David Jay had the same thought, coined the same term, and then did something about it.
AVEN, the Asexuality Visibility and Education Network, was formed in 2002 and I joined up a year or so later. AVEN, and other groups formed later, share the combined missions of connecting asexuals to each other and educating non-asexuals about asexuality.
The education is important, because asexuality is so pervasively erased. Over and over, asexuals are told they will grow into sexuality, or have merely not met the right person. Over and over, asexuals are told they must have a hormone problem, or a mental health problem or some other health reason to explain their orientation, even if the orientation is causing no distress (except being subjected to erasure and badgering.) Over and over, books, courses and lectures on sexuality state that all people are sexual people.
So there’s been a lot of asexual community push-back against the idea that asexuality is a sign of a health problem. And it comes in forms of things like this, from the AVEN FAQ: Asexuality is not a dysfunction, and there is no need to find a "cause" or a "cure."
Pushback against society assumptions about sexuality is sorely needed. I was taught in medical school that everyone has interest in sex sooner or later and that a lack of interest is a sign of abnormality. It is important for people to understand that asexuality does not imply illness or disease or disability.
But as the years have gone by, and activism has moved from AVEN to a movie (A)sexual, the message continues, “we aren’t disabled.”
Leaving some of us to say. . .but. . . some of us are!
Phase 3) Acknowledgment
Over the past few years, there has been some pushback against the pushback, from other asexual disabled people. Disabled asexual people? Asexual people with disabilities? People with asexuality and disability? Well, whatever we are calling ourselves, we are starting to point out that disability sexuality activism has a tendency to erase asexuals, and asexual activism has a tendency to erase people with disabilities.
If nothing else, the numbers are on our side. Best estimate for asexuality is 1/100. This is based on people reporting a lack of attraction to other people of any gender, not based on people self-describing as asexual, and comes from a very large survey in England. It is likely that many asexual people have not yet encountered the term, just as many sexual people have not. Best estimate for disability is 18.7%, from US census data. Therefore, about 1% of PWD would also be asexual. Or about 20% of asexual people would also have a disability.
That’s over 500,000 people in the US, folks.
By the odds alone, that’s 500,000 people being erased every time a disability activist claims everyone is sexual, or an asexuality activist claims that asexual people are in all other ways just like the majority of people.
That’s 500,000 potential activists who are being excluded from sharing in disability or asexuality activism because the message they are asked to spread denies their very existence.
Phase 4) Intersectionality
Recently, really recently, there has been some suggestion of overlap between some disabilities and asexuality. I’m trying to say this very carefully, because I don’t want to imply causation and potentially undo decades of activism. There is definitely some overlap, because of statistics, as I said above.
But there is maybe, maybe some additional overlap, more than would be expected by chance, with autism in particular.
There are plenty of sexual autistics. And there are ways in which autism can intersect with sexuality, whether it is in difficulty with any kind of touch, or differences in relationships or increased need for time alone. And there is some anecdotal thought that there are more asexual people in autistic spaces than would be expected by chance, and more autistic people in asexual spaces also. There’s also some thought that autistic people may be more open to identifying as a minority sexuality due to placing less of a priority on social conventions and expectations.
There is one study, also. It has some methodological flaws but did suggest a higher percentage of autistic people identified as asexual than a non-autistic comparison group.
Clearly, we need more studies and we need more discussion. We need more discussion of sexuality and asexuality when talking about disability, and we need more discussion of autism and other disabilities when talking about asexuality. And we need these discussions both within each respective community and with the greater world out there.
We can do activism without erasing people.
We can say, people without disabilities are not necessarily asexual, but some are!
We can say, asexual people do not necessarily have a disability or health condition, but some do!
We can say, don’t assume sexuality or asexuality with disability, don’t assume disability or illness with asexuality.
It’s tough to be a minority, and it’s tough to be at the intersection of multiple minorities.
Let’s not make it tougher by erasing each other while telling the world about ourselves.
We’ve got decades of reading, writing and activism ahead of us. Let’s advocate together.
Standing on the corner of disability and asexuality, watching all the activists go by
I’ve been standing on the corner, watching activists go by for several decades now. Actually, mostly I’ve been sitting on a couch reading the activists’ books, pamphlets, blogs, message boards and tumblrs. Occasionally, I’ve spoken myself, written myself, even picked up a sign or two myself. And I’ve advocated from within the system, speaking up when relevant. Just this past week, I presented to my department of child developmental disability specialists about aspects of gender and sexuality that are relevant to our practice. And as I put my thoughts together, I realized that talk about disability, and talk about sexuality, have been going through phases.
Phase 1) Disability visibility
I read a lot about disability growing up, but not much activism. I read children’s non-fiction about specific disabilities and about disability in general. I read biographies, parent memoirs and autobiographies. I read the disability sections of adult books such as Dr. Spock and the Boston Children’s Hospital health encyclopedia. I read disability fiction. Many of these books I read multiple times.
But it wasn’t until college I discovered adult disability activism, through a combination of books in my college library and pamphlets from a pile in the disability coordinator’s office. John Hockenberry’s Moving Violations. Nancy Mairs’s Waist High to the World. Joseph Shapiro’s No Pity. And the pamphlets from the Disability Rag, before Ragged Edge online was a thing, because online was barely a thing.
And they all pushed back against commonly held assumptions about people with disabilities. We don’t always need help. We aren’t children, so talk to us, not our companions. Don’t say wheelchair-bound. Don’t pat wheelchair-users on the head. And by the way, we aren’t asexual.
They meant, of course, that people with disabilities aren’t necessarily asexual. People with disabilities should not be seen and treated as perpetual children, incapable of adult relationships and, well, relations.
Pushback against society assumptions about disability is sorely needed. An adult with a physical disability told me last week that she has been approached in public to ask if she can have sex, and if so, how. Parents of children with developmental disabilities look at me in confusion when I point out their child may someday date, fall in love, have sex or even parent. Children receiving special education services do not always get the sex ed provided to their non-disabled schoolmates.
But as the years have gone by, and activism has moved from brochure to blog, the message continues, “we aren’t asexual.”
Leaving some of us to say. . . but. . . some of us are!
Phase 2) Asexuality visibility
“Asexual” was a term I heard applied to amoebae in the 1990s. Amoebae, paramecia, some forms of yeast, but never people. Still, when my college friends and I applied it to me in 1994, it made a lot of linguistic sense, compared to the terms heterosexual, homosexual and bisexual. In a similar vein, I had already described myself as adextrous instead of ambidextrous, as I use both hands equally badly. It was around this time David Jay had the same thought, coined the same term, and then did something about it.
AVEN, the Asexuality Visibility and Education Network, was formed in 2002 and I joined up a year or so later. AVEN, and other groups formed later, share the combined missions of connecting asexuals to each other and educating non-asexuals about asexuality.
The education is important, because asexuality is so pervasively erased. Over and over, asexuals are told they will grow into sexuality, or have merely not met the right person. Over and over, asexuals are told they must have a hormone problem, or a mental health problem or some other health reason to explain their orientation, even if the orientation is causing no distress (except being subjected to erasure and badgering.) Over and over, books, courses and lectures on sexuality state that all people are sexual people.
So there’s been a lot of asexual community push-back against the idea that asexuality is a sign of a health problem. And it comes in forms of things like this, from the AVEN FAQ: Asexuality is not a dysfunction, and there is no need to find a "cause" or a "cure."
Pushback against society assumptions about sexuality is sorely needed. I was taught in medical school that everyone has interest in sex sooner or later and that a lack of interest is a sign of abnormality. It is important for people to understand that asexuality does not imply illness or disease or disability.
But as the years have gone by, and activism has moved from AVEN to a movie (A)sexual, the message continues, “we aren’t disabled.”
Leaving some of us to say. . .but. . . some of us are!
Phase 3) Acknowledgment
Over the past few years, there has been some pushback against the pushback, from other asexual disabled people. Disabled asexual people? Asexual people with disabilities? People with asexuality and disability? Well, whatever we are calling ourselves, we are starting to point out that disability sexuality activism has a tendency to erase asexuals, and asexual activism has a tendency to erase people with disabilities.
If nothing else, the numbers are on our side. Best estimate for asexuality is 1/100. This is based on people reporting a lack of attraction to other people of any gender, not based on people self-describing as asexual, and comes from a very large survey in England. It is likely that many asexual people have not yet encountered the term, just as many sexual people have not. Best estimate for disability is 18.7%, from US census data. Therefore, about 1% of PWD would also be asexual. Or about 20% of asexual people would also have a disability.
That’s over 500,000 people in the US, folks.
By the odds alone, that’s 500,000 people being erased every time a disability activist claims everyone is sexual, or an asexuality activist claims that asexual people are in all other ways just like the majority of people.
That’s 500,000 potential activists who are being excluded from sharing in disability or asexuality activism because the message they are asked to spread denies their very existence.
Phase 4) Intersectionality
Recently, really recently, there has been some suggestion of overlap between some disabilities and asexuality. I’m trying to say this very carefully, because I don’t want to imply causation and potentially undo decades of activism. There is definitely some overlap, because of statistics, as I said above.
But there is maybe, maybe some additional overlap, more than would be expected by chance, with autism in particular.
There are plenty of sexual autistics. And there are ways in which autism can intersect with sexuality, whether it is in difficulty with any kind of touch, or differences in relationships or increased need for time alone. And there is some anecdotal thought that there are more asexual people in autistic spaces than would be expected by chance, and more autistic people in asexual spaces also. There’s also some thought that autistic people may be more open to identifying as a minority sexuality due to placing less of a priority on social conventions and expectations.
There is one study, also. It has some methodological flaws but did suggest a higher percentage of autistic people identified as asexual than a non-autistic comparison group.
Clearly, we need more studies and we need more discussion. We need more discussion of sexuality and asexuality when talking about disability, and we need more discussion of autism and other disabilities when talking about asexuality. And we need these discussions both within each respective community and with the greater world out there.
We can do activism without erasing people.
We can say, people without disabilities are not necessarily asexual, but some are!
We can say, asexual people do not necessarily have a disability or health condition, but some do!
We can say, don’t assume sexuality or asexuality with disability, don’t assume disability or illness with asexuality.
It’s tough to be a minority, and it’s tough to be at the intersection of multiple minorities.
Let’s not make it tougher by erasing each other while telling the world about ourselves.
We’ve got decades of reading, writing and activism ahead of us. Let’s advocate together.