Sexual health testing and disabilities

I’ve written before about some of the barriers that disabled people face when wanting to check on their sexual health. Whether it’s inaccessible buildings, unsupportive care teams or clinics that don’t have hoists, there’s a lot of barriers.

Well, Enhance the UK have paired up with SH:24 to provide 900 FREE test kits to disabled people.

It’s a simple process to sign up, they take some basic information from you and then send you out the kit in the post. Mine arrived in discreet packaging so could be kept private – my carers always open my post for me by default but I’m also very open with them so wasn’t concerned.

Inside mine was a vaginal swab and a blood test. I’m going to say that what you get depends on who you are etc!

I have severe vaginismus so was somewhat concerned about the swab – it has to be inserted 5cm into your vagina for 15 seconds. But, whilst I wouldn’t say it was comfortable, it was fairly managable for me. For people who can’t reach down there themselves, I’d say if you have help putting in a tampon, this will be fine. If you are sexually active, ask your partner to do it if they can.

For the blood test, you get three finger pricks and a small vial to drip your blood into. My body doesn’t like giving blood so I made sure I was hydrated and warm before hand, both things that help with blood flow and hence blood giving.

Top tip: Place your finger in a warm cup of water for a while first to get the blood flowing!

Once you’ve done the tests, you pop them in the provided envelope and send it off.

After three weeks I got a reminder text that asked if I needed any help – I didn’t as I’d actually just sent my tests back but it was a nice, friendly message. I had ended up waiting a while to do my test because I was on my period. They do say you can do the swab whilst you’re on but my periods are so heavy that I didn’t want to.

Three weeks and one day, I got a text saying that my tests had been recieved and would be turned around within 72 hours. A day or so later I got another text saying it was a little delayed. But then, not long after, I got my results by text.

My test had checked for chlamydia, gonorrhoea and syphilis. The first two were negative and the third was unknown as the blood had clotted and the test couldn’t be completed. I was able to text back to request a new blood test kit.

When I signed up, one of the questions was about sexual assault or rape. As someone who has experienced historic sexual assault, I ticked the box. That evening, a few hours after I’d completed the form, I recieved a text with a link to find my nearest Sexual Assault Referral Centre for support. There was also the offer to text back and arrange a time for a phone call.

Throughout the process, I found it easy, friendly and accessible. It was simple and hassle free and felt like I was being supported. I would definitely recommend it.

My bookshelves… Sex

Hannah Witton recently did a video where she took viewers on a tour of her sex books (she’s a sex educator) and it inspired me to introduce you guys to my bookshelves, starting with my sex books!

A Curious History of Sex by Kate Lister
Cardinal Men and Scarlet Women, by Jan Keessen
Don't Hold My Head Down by Lucy Anne Holmes

Animals and sex

book shelf showing some of the books from the blog

Assumpions people make when you’re in a wheelchair

That you can’t speak.

That you can’t make your own decisions.

That you must be child-like, innocent, naive and unable to take on responsibility.

That they shouldn’t look at you because that would be offensive.  To the point that people end up walking into the wheelchair.

That you have never ever heard anyone quip “have you got a license for that?” or “have you passed your test?”.  We’ve heard it.  Over and over and over.  It’s not funny.  Do you have a license to use your legs? Exactly.

That you can’t be working.  Yes some wheelchair users can’t work but also some non-wheelchair users can’t work either…

That because you can’t possibly be working, you can’t be in a hurry to get anywhere so it doesn’t matter when they’ve blocked your car in because they’re “just going to be a second”.

That you must need full time care.  And yes, some wheelchair users do but not all.

That you can’t move your legs or stand.  Again, some wheelchair users can’t stand, but some of us can.  Getting a sense that there is no generalisations here?  Good.

That you get all these perks given to you such as a wheelchair or a wheelchair vehicle.  Not in the slightest bit true.  There is a system rigged against you getting anything.  Many wheelchair users have had to buy their own chair.

That having a wheelchair is a dreadful thing.  Not true.  Having a wheelchair means you can go places and do things.  Instead of being a prison, wheelchairs are freedom.

That you must be interested in sports and taking part in the paralympics.

That you must be a lovely, kind and generous person.  Some people who use wheelchairs are horrible people.  Just as some people who don’t use them are.

That you are not a sexual being.

That any relationship you have must be based on pity.

That you are brave for continuing to live.

That you are inspirational for leaving the house.

 

Sex when you have a disability

I was flicking through instagram earlier today and came across an amazing post by @wheely_good_time.  It was a group of spoonie sex tips (learn about the spoon theory if you don’t know what a spoonie is) and I loved them!  I instantly bounced them up into my stories and saved them.  They are practical tips and reminders with a nice dose of humour and I love that.

I especially like tip 6 about positions which suggests starting with spooning!  And I think positioning is something that is really important with some disabilities or chronic health conditions.  Do you feel better when you’re sitting or laying?  Is your wheelchair the most comfortable place for you?  Incorporate that into your sex life!  Do you find having your legs elevated on a cushion helps you feel better?  Well that’s great because it can position you for better sex!  Use the motion of a wheelchair or the many positions of a riser recliner in your favour.  Research positions together and you’ll find out what you both like.

“Use a powerchair? Explore the tilt function to get your body in a comfortable position for self-exploration. Depending on your mobility, explore the sensation of shifting or rubbing your weight on the seat. Go for a jiggly, bumpy ride on a rough surface. Play around with the position of your belt and/or straps if you want to see what light bondage feels like.”
ACSEXE+

I’ve talked on my blog about communication before but I want to reiterate that I think a safe word is important. You need a way to distinguish between moans of pleasure and the screams of “shit my hip just dislocated”.

Sex isn’t a race.  Quick sex can be fun and has it’s place but we are so often shown this idea of destination sex.  Sex which is just about penetration and anything else that’s happening is just to get to that goal.  Sex without penetration can be more creative. It can take an afternoon and go in fits and starts as energy allows.  You can take a breather and just lay there together.  These things are ok and can create intimacy.

“In the movies, couples are always portrayed as being flawlessly sexy and romantic. In reality… people get cramps. They hit their head. Their stomachs make weird noises. They pull a muscle. And when you live with chronic pain, things are, truthfully, even more likely to go a bit awry. Don’t be afraid to laugh with your partner – it may even bring you closer together.”
– 
The Mighty

I’ve said before but think about timing.  I know that there is this idea out there of spontaneous sex that often happens after bedtime but in reality, we could be having better sex if we listened to our bodies.  When are you most awake?  When do you feel at your best?  If that’s sunday lunch time then make the most of it!  And if your bed is like mine and full of random stuff – positioning pillows, books, bears… – then move them before you get started.  That way you don’t have to stop midway to make things more comfortable.  It also means that if, like me you are fed overnight, you don’t have to add in navigating extra tubes.

Play to your individual strengths.  If one of you is physically stronger, make them do more of the physical work.  You can give back in other ways – dirty talk, creating fantasies, excellent playlists etc.

Anyway, this post was mostly to link to the cool instagram post and to revive the conversation around sex and disability.

And remember that sex releases wonderful hormones which can help with pain!

Related reading:

Do all disabled people think the same?

Clearly the answer is no.  But this is an interesting video which asks some interesting questions and I wanted to share my responses.  I realise this comes on the back of another blog post where I respond to questions but I’m not anticipating that this will become a trend.

Am I offended by the word disabled?

I know this is something that bothers some people, and different places have different preferred language.  For example in the UK, we tend to speak of disabled people whereas in the US, people with disabilities seems to be the preferred option.

Anyway, back to the question.  I have no issue with the word disabled.  It describes my situation and is vastly better than some of the alternatives such as differently abled or special.  I do think it’s important to remember that disability, or being disabled, is more than just wheelchairs though.  It covers physical, mental and learning disabilities and I do think that the symbol of a person in a wheelchair is too narrow.

Does this country provide enough resources for the disabled community?

It doesn’t matter where in the world you are, the answer to this is no.  Of course some countries are doing a better job than others but disability is generally underfunded, under-acknowledged and misunderstood.  There are still so many taboos and stereotypes out there and these damage opportunities for disabled people.

Are most people ignorant about my disability?

For my particular disability, things are getting better.  There is more information about there about my condition.  In terms of using a wheelchair, there is a lot of ignorance.  People still think if you use a wheelchair, you can’t stand or walk at all.  This is the case for some people but many of us can get out of our chairs.  Related to that is the idea that disability looks a certain way and anyone who doesn’t fit that image must therefore be faking.

Do I appreciate it when people offer me help?

I was in town once, in my wheelchair outside a shop waiting for my friend.  I was trying to put my coat on.  Someone came up behind me, I hadn’t heard them, the first I knew was when they grabbed my coat and started trying to help me.  I do understand it was meant well, but it could easily have led to my shoulder dislocating.  Please, do ask if you think I need help, but don’t just thrust it upon me.

Also, if you do want to help and have asked, listen to me as I probably know how best you can help me.

Is dating difficult?

Yes.  Dating requires being vulnerable and that can involve another layer of vulnerability when you have a disability.  There are also all the should I shouldn’t I’s.  You want people to see past the disability but also, especially if you’re short on energy, you want to meet up with people who aren’t going to turn out to be prejudiced.  And there are a lot of people out there who don’t see disabled people as sexual beings, people who wouldn’t consider dating a disabled person and people who assume that dating a disabled person means you become their carer.

Have I felt like a burden?

Yes.  In general, my friends don’t make me feel like a burden but strangers do all the time.  Whether it’s when I’m asking to squeeze past in my wheelchair or need a hand moving chairs in a cafe, there does seem to be two reactions.  The people who think nothing of being helpful and those other people who really make you know that they have had to go out of their way for me.

Would I change my disability?

This is an impossible question.  I would love to not be in pain 24/7 but I also wouldn’t be me if I didn’t have my disability.  Without it, I have no idea what my life would look like.  I’d be on such a different track and whilst that’s intriguing, there are things in my life that I really value that wouldn’t be with me without my disability.  I wouldn’t have had as much time to write and do art and learn about tarot and astrology.  I certainly wouldn’t know as much as I do about nature.

Am I living a fulfilled life?

When read with the above question, I think the answer has to be yes.  It’s a different life but it’s one that I have put time and effort into creating.  And even without my physical disability, I’d still have had to overcome my mental health issues.  I know what I need to do in order to feel fulfilled.  I learn, I read, I think, I create, I go out and I chill out.  Retiring meant I had to figure this out, it was that or living in a groundhog day world where I did the same nothingness every day.

Disability and sexual health

Note, this is primarily going to be about the experience of cis women as I know more about this right now and I feel that trans disabled people are likely to have some extra barriers.  And obviously there are many different disabilities and this post is going to focus on physical disabilities.  It is also important to note that some people have had great experiences, but it is a postcode lottery.

You would think that medical buildings would be one of the most accessible places in the UK, but the reality is shocking.  Being in hospital with a physical disability was horrendous, but that’s for another post, this one is about sexual health services.

A recent report from Jo’s Cervical Cancer Trust found that:

  • 88% said it is harder for women with physical disabilities to attend or access cervical screening
  • 63% said that they have been unable to attend cervical screening because of their disability
  • 49% said that they have chosen not to attend cervical screening in the past for reasons such as previous bad experiences related to their disability or worries about how people might react.
  • 45% said that they felt their needs have been forgotten and 38% said that they feel the doctors or nurses don’t take their needs seriously

This is not ok.  Sexual health matters.  And it’s not just about cervical screening.  The issues at play with the smear test are also often found in STI testing.  All of this is putting women with disabilities in danger.

In terms of screening for breast cancer, the NHS website says:

“Mammography is a procedure that’s technically difficult. You have to be carefully positioned on the X-ray machine, and must be able to hold the position for several seconds.

This may not be possible for women with limited mobility in their upper bodies or who are unable to support their upper bodies unaided.

If you have a disability, your breast screening unit should be able to advise you if screening is technically possible, and on the most appropriate place to be screened. This will usually be at a static unit.

If a mammogram isn’t technically possible, you should still remain in the call and recall programme, as any increased mobility at a future date may make screening easier.

If a woman can’t be screened, she should be advised on breast awareness.”

And whilst I understand the physical limitations, it doesn’t feel like enough.  In the US, between 2001 and 2005, 75.4% of women without disabilities went for a mammogram, compared to 54.9% of those who have a disability.

Barriers to accessing sexual health services include, but are not limited to:

  • surgeries that are not wheelchair friendly – a shocking 63% of respondents to the Jo’s Trust survey said their GP was wheelchair accessible
  • a lack of hoists and adjustable beds
  • previous negative experiences – women with disabilities may have had more interaction with the medical community and bad experiences more generally can mean they are reluctant to go for screening.  It’s not uncommon for women to feel they aren’t listened to or taken seriously when they present with illness or disability and no one wants to subject themselves to more of that.
  • related to which is staff attitudes, and not seeing disabled women as sexual beings and hence seeing sexual health as a low priority.

“In some cases, women reported being told screening is too complex to arrange and have been told it is not possible or even asked to sign a waiver stating that they do not wish to receive screening.”
– Jo’s Trust

Attitudes and beliefs taint the way people are treated.  I’ve had GPs question why I wanted contraception and assume the only reason would be to stop my period.  This didn’t happen before I became disabled.  And if someone isn’t seen as sexual, then by extension they don’t need to access sexual health services.  This way of thinking can block innovative, or just common sense, ways of providing these services. 

These solutions might be home visits for people unable to leave their bed, buying a hoist for the GP practice or referring people to a hospital where there are appropriate facilities.  It could be having appointments which allow for women with disabilities needing longer or it could just be better training.  Sometimes it might be as basic as having an accessible GP practice which really shouldn’t be a big ask.  And sometimes it might be even simpler and be a case of including access information on the website.  I checked out the online information for my nearest sexual health clinic and there is no mention of access or blue badge parking and that in itself is a barrier than can be easily and cheaply overcome.

Other good practice ideas include having staff that are flexible, that can problem solve and who want to work with the patient to find out what works for them.  It’s possible extra reassurance may help, or a “we’ll try it and see what happens and go from there” attitude.  For some women, going in and seeing the space may help them to work out adaptations with the staff beforehand.  It might also help to have another professional on hand to help.

There are other sexual health barriers that disabled people face, for example, if someone has limited use of their hands, how can their check their breasts/testicles for lumps?  Which can make the NHS advice for women who can’t have mammograms that bit more difficult… and certainly adds to the following horrific statistic:

“Disabled women don’t have the same access to screening for breast and genealogical cancers as non-disabled women, and are up to three times as likely to die of breast cancer.”
Disability Horizons

Unfortunately, this tends to mean the onus is on the woman to keep pushing for screening and be their own advocate… And until things change, one of the most important things we can do is make people aware of the issues and keep talking about them.  Hence this blog post!

Period pants and disability

I’ve written before about my difficult relationship with my periods… I have heavy bleeding, struggle with period pains, can’t use contraception to stop my periods and due to my disability have very limited options in terms of how I cope with the bleeding.  I can’t use a moon cup or tampons (I have vaginismus so nothing goes up there), my hand pain can make using sanitary towels difficult so my carers have to get involved and I’m also actually allergic to them…  I have tried reusable sanitary towels which overcome the allergy but not the hand side of things…

Aside, this isn’t a sponsored post.

I’ve been seeing a lot of talk about period knickers and when they first came on my radar they were expensive and reviews didn’t seem great.  At that point, I wasn’t having to ask my carers for much help so the idea of asking them to rinse blood stained underwear just didn’t feel great.  Since then, my periods have got heavier so carers have had to rinse knickers, pj bottoms and bedding on a monthly basis.  I’ve also had to ask carers to help me take off and put on my sanitary towels more often.  With this in mind, I revisited period knickers and found that the market had increased and with this, reviews had been more favourable.

So I ordered a pair of Modibodi heavy absorbency pants.  I was reassured that they offer a refund if you buy a pair and they are faulty, they offer a sixty day replacement.  I was cautious but hopeful.  The first time I wore them I waited until a couple of days into my cycle and wore them during the day.  And it all went really well!

I think the only way to explain is a bit graphic but it does illustrate things better… So that first day I tested the absorbency by wiping the gusset with toilet roll and… nothing!  Well, there was a teeny tiny smear of very little blood once, such a different picture to when I use sanitary towels.  I was so impressed I actually wore them that night as well with no leakage!

But what about day one of a period?  Well, that has now been tested.  And it’s all been great! When we rinsed them there was so much blood and yet, no blood on my clothes, pjs or bedding!  The only blood that’s been on the knickers themselves is clots and that just sits on top of sanitary towels anyway.  As I said, when it came to rinsing them there was a lot of blood but once rinsed and left to dry, they get chucked in the washing basket.  And it is just rinsing, you don’t need to hand wash them properly, no need for washing powder or kneading, just rinse in cold water!

I am still very early on in my journey with period pants but I am impressed so far.  After the first test I was so impressed that I went ahead and got enough for a full cycle.  I would recommend them and, whilst I know that different things work for different disabilities, I do think they are going to be a very helpful tool in the disabled persons toolkit.

Let’s talk about sex…

Earlier this year, there was an issue of Oh Comely which had a call out for personal stories about sex and it got me thinking.  Whilst I have long championed the need for comprehensive sex and relationship education in schools and youth clubs and seen the value of it first hand, and whilst I have post after post on my blog about sex, I haven’t had a particularly great sex life.  And to say that feels like I am invalidating myself when I’ve previously stressed the need to speak about sex.

To say that you haven’t had a particularly great sex life feels like you are openly telling the world you are a failure.  And I have felt like a failure because of my sexual experiences.  I want to make it clear here that this isn’t an attack on my partners.  That said, the first (consensual) fumble I had was pretty horrific and came an hour or so after my first, also not great, kiss.  The latter was a little like an octopus had attached itself to my face, the former was in the dark in an empty outdoors shopping centre.  Cold hands forced themselves under my clothes, my breasts were grabbed like they were pieces of meat and then a security guard turned up.  I stayed with that partner for far too long.  But aside from more fumbling and a pretty horrific experience where I blacked out during oral sex, we never went “all the way”.

Enter partner two.  A much better person, much better kisser and someone I still love, platonically, today.  Partner two showed me just how bad partner one had been… Although partner one did, over time, become better at kissing.  I hope their spouse is grateful to me.  And yes, facebook stalking does reveal they are married.

Partner two was the first person I really wanted to have sex with.  And things were great.  Right up until penetration.  It just would not work.  And as sex is such a natural behaviour, and as no one ever tells you about the problems (aside from erectile dysfunction), I thought I was broken.  I felt great shame and I felt like I was letting my partner down.  I felt like I wasn’t a “proper” woman.  I was a failure.  Guilt ate away at me – I wasn’t giving my partner the full sexual experience, it wasn’t fair on him – and I was so ashamed of myself and my inability to do this one, supposedly easy, thing.  I mean teenagers can do it so why, at 21, couldn’t I?

At the same time as I was failing at sex, I was telling people about how important high-quality sex and relationship education is.  I was advocating for pleasure focused information.  I was championing the need for women to stand up for themselves and get what they need out of sex.  And here I was, a failure.

At one point during my relationship with partner two, I was volunteering at a youth club.  We had a night where we got out the demonstrators and condoms and other forms of contraception and we sat down with a small group of young people and talked sex.  We were really open, we answered their silly questions whilst they relieved themselves of some of their nervous energy.  And in answering the questions honestly and openly, they started to ask some of the more pertinent questions.  The group included some lovely girls who were reasonably informed but also some lads who had probably been kicked out of their school sex ed class for being rowdy.  They were also the same guys who regularly boasted about buying condoms.  Yet when the demonstrators came out, they put the condoms on inside out.  They didn’t realise there was a right and wrong way.  And so we sat there, casually explaining why you needed to put it on the right way and why you pinch the end.  It was a low pressure, really open discussion and I really think that everyone of those young people took something valuable away, whether it was knowledge or the notion that it is ok to ask questions and to talk about sex.

And then, I went home to the partner I could not sexually fulfil.

By this time, I had seen a doctor who gave me a word – vaginismus – which made me feel a tiny bit less like a freak.  She had advised using vibrators, starting small, and working my way up.  This is sound advice and it chimes with everything the internet had to offer back then, which was incredibly limited, but we didn’t really get anywhere.  Later I would learn that my genetic condition – Ehlers Danlos Syndrome – was likely contributing to my troubles.  Essentially some of my muscles work overtime and some don’t do very much, the muscles around my vagina are some of those which work overtime.  Every time anything comes near it, they clamp down.  Tampons, smear tests, coil insertion, they are all out of the question.  For a long time, I thought there must be something physically wrong with me down there.  Alongside this I was anxious that I might have been sexually abused and blacked out the experience*.

I was too embarrassed to talk about this with my friends and when sex was discussed I sort of nodded along as if I could relate.  Penetrative sex is a normal, natural process, without with humans would have died out millennia ago.  For thousands and thousands of years, women have been able to do this one thing that I could not.

Things are different today.  Today I am more confident about speaking up, I am more confident and I live by the words I’ve preached for the last couple of decades – sex is not defined by penetration.  We live in a world where penis in vagina sex is privileged above all other kinds, a world where penetration is seen as the end goal, a world where other sexual activities are labelled foreplay.  Today I am much more confident about shouting this from the rooftops.  I am much more confident that my assertion that there is no right way to have consensual sex is correct.  I am much more confident that my version of sex can be just as pleasurable.

Today there is more information out there.  Vaginismus even has a page on the NHS website which it didn’t when I was trying to figure things out ten years ago.  In some ways things have changed a lot, there is more information out there, but in other ways, things haven’t changed at all.  We still assume that sex is about penetration and we still don’t discuss sexual issues beyond erectile dysfunction.  Our view of sex is still filtered through a patriarchal, heterosexual lens.  I hope by sharing my story, by speaking up, that I can help someone else who is going through a similar experience.

I haven’t had a particularly great sex life but I am incredibly proud of the journey of self discovery that I have been on.  I have grown so much and I have a much more secure sense of self worth these days.

I haven’t had a particularly great sex life but everything I have to say about sex still stands up to scrutiny.


*I was abused, as far as I know I didn’t black out and as far as I know I wasn’t penetrated.  It took me years to accept that what had happened was abuse.  But that is a story for another day.

Sex, the charmed circle and disability

Note: This is almost 4000 words long… just thought you should have a heads up!  I was going to split it but it didn’t feel right…

What is the charmed circle?

In 1984, Gayle Rubin argued that we should view sex as a vector of oppression – we shun what we don’t understand and human sexuality is so varied that we inevitably don’t understand all of it so we do consider some acts as lesser or as abnormal. As such, we then end up oppressing people who carry out those acts and society creates a hierarchy of sex.

“Like gender, sexuality is political. It is organized into systems of power, which reward and encourage some individuals and activities, while punishing and suppressing others.”
– Rubin

A significant consequence of a hierarchy of sex is the creation of moral panic.  Historically we have seen panic and moral outrage in response to different sexual behaviour, eg sex outside of marriage, same sex sex, prostitution and obscene material.  The theme they share is always that they are outside the privileged, or charmed, circle of behaviour.  One reason these panics create such out roar is because the behaviour and activity is seen, ultimately, as a threat to civilisation.  If ‘bad’ types of sex are allowed to become mainstream then even ‘worse’ behaviours will follow. We see this when fear of children being molested is brought up in arguments about allowing same sex marriage.

Time and place are important when looking at what is and isn’t acceptable.  Sexual behaviours have changed rapidly in the last century and this speed has created confusion about what is ‘normal’ when it comes to sex.

“Regarding sexual normalcy from a social perspective, the individual accepts societal norms for choice of sexual object and activities.  Within a given society, sexual norms may differ according to a subgroup’s religion, education, political beliefs, or socioeconomic status.”
– Leslie R Schover and Soren Buus Jensen

To try and illustrate the concept that certain sexual behaviours are considered privileged over others, Rubin developed the charmed circle.  Sexual activities which are judged by society as being good or natural are set up within a binary where the flip side is then unnatural and bad.  The inner circle is where good sex takes place and the outer therefore is where deviant sex is place.  This diagram shows how different values are used to judge the acceptability of different types of sexual behaviours and demarcates the line between normal and abnormal.

In setting up a binary of good and bad behaviour the charmed circle, by extension, creates good and bad people.  In reality of course, we are all complex layers of differing, and sometimes competing, identities and this matrix of interaction can balance out certain sexual behaviours or come together to emphasis the prejudice that is cast on a person’s sexual identity.  It is important to note that making the ‘right’ decisions about sexual behaviour can result in our belonging to, or not, a particular group, to having citizen ship of a particular society.

As a disabled person who is interested in disability and sexuality, I shall be viewing the charmed circle through a disability lens.  Having said that, I don’t feel I can truly step away from my other identities and hence this will not be an unbiased look at the charmed circle.  In addition to being disabled, I feel it is important to note here that I am also bisexual, feminist, single and cannot have penetrative sex. These are all parts of my identity and as such they will affect how I view the charmed circle.

What is sex?

As I mentioned above, I cannot have penetrative sex.  This obviously skews my concept of what is and isn’t sex, but despite this, for so long I had internalised the dominant discourse that penis in vagina sex is the only legitimate type of sex, or certainly that it is top of the hierarchy.  It works well in our culture of black and white thinking as it is a clear cut act.  We set people up as virgins or sexual and whilst we don’t value these labels as strongly as Victorian society did, we do still feel the need to have a specific, defining moment where you move from one to the other.  This is why penis in vagina sex is so useful in defining sex – it is a very precise moment when you transition from virgin to not and I think we still find ourselves with internalised ideas about what this means as part of maturing.

However, penis in vagina sex is not available to us all.  Not everyone is attracted to someone with different genitalia, not everyone has a functioning penis or vagina and even if you do, it doesn’t mean that penis in vagina sex is what you enjoy.  This also sets up a goal orientated vision of sex instead of one that focuses on pleasure throughout.  How many times do we see male orgasm portrayed in the media as the aim of sex?  What about female orgasm?  And what about non penetrative acts that are not purely for foreplay?  I have problems with that word – foreplay – because it implicitly sets up the idea of a destination and privileges the goal over the journey.  I haven’t read magazines which talk about sex for a while now because they frustrate me but they did, and I assume still do, portray foreplay as incidental.  As a detour to get to the (male) orgasm.

Margrit Shildrick discusses these ideas and how historical and religious ideas still shape our understanding and definition of sex today.

But for my purposes here, I’m going with the idea of self definition.  Sex is what the person or people engaging in it consider it to be.

How do disability and sex interact?

Note, different people experience disability very differently and will also experience being disabled and sexual in vary different ways.  This makes it very hard to discuss this area comprehensively and yet concisely, as such, please note that some ideas will not apply to some disabled people and there will be other aspects that I haven’t been able to cover.

Earlier I mentioned that sexual activity can be related to someone’s ability to be a citizen of a society and Cashelle Dunn argues that disabled women are denied full citizenship simply by virtue of being a disabled woman.

When it comes to disability, people are reduced to things, objects to be pitied, to be looked after.  There is a prevailing view that the disabled person is childlike, especially if they are perceived as being dependant, and this is a barrier to seeing disabled people as sexual.  Society wants to prevent disabled people from having sex in the same way they do children.

Two thirds (67%) of the British public feel uncomfortable talking to disabled people.

Over three quarters (76%) think of disabled people as needing to be cared for, and 13% think of disabled people as getting in the way some or most of the time

Just a third (33%) of British people said that they would feel comfortable talking to disabled people, with many worried that they will seem patronising or say the wrong thing

– 2014 report from Scope

44% of people in a Guardian poll said they had never had sex with someone with a physical disability and probably wouldn’t.

These are not sexy ways to view people.  And thus, these attitudes taint society’s view of disabled people having sex.  If 67% of people are uncomfortable talking to me, how are they going to feel about having sex with me or even thinking of me as a sexual being?

Disability, sex and the charmed circle

“I am aware that, for many, sex and disability at times seem not so much intersectional as incongruous: “What exactly do you do?” is about as frequent a question for disabled people, in relation to sex, as it historically has been for many queers. The motivation behind the question, however, has usually been different. Although stereotypes of the oversexed disabled person engaged in unspeakable acts do exist, disabled people are more commonly positioned as asexual— incapable of or uninterested in sex.”
– Robert McRuer

Whilst disability is not one of the segments in Rubin’s charmed circle, I would argue that it is implicit in many people’s view of acceptable and unacceptable sexual behaviour.  However, because the majority of the population assume disabled people to be asexual, it has possibly not crossed many minds to even include it in the circle.  I am positing that for many people, disabled people are outside the circle entirely.

“There is an unspoken taboo about relationships and disabled people.  Disabled people’s sexual and emotional needs are rarely included in any discussion or representation in everyday life.  This reinforces the public’s attitudes and expectations towards disabled people as seeing them as ‘sick and sexless’ rather than participating in full sexual and family relationships.  It is perhaps one of the most pernicious ways in which society has blanked out disabled people from a fundamental area of social life.”
– Lamb and Layzell, 1994

Echoing Rubin’s discussion, Shildrick notes that there is a “cultural imaginary that fears nonnormative sexuality as being a potential point of societal breakdown.”

 “Where disabled people are seen as sexual, this is in terms of deviant sexuality, for example, inappropriate sexual display or masturbation.  Derogatory stereotypes, concerning for example blindness, are typical of this tendency.”
– Tom Shakespeare

I, obviously, advocate for the inclusion of disability within the circle and whilst I do not believe in a hierarchy of disability or that certain types of disability are acceptable when it comes to sex, I do know that some people, consciously or unconsciously, feel this way.  What I mean by this is that, for example, people with invisible disabilities are considered to be potential sexual partners and that it is acceptable in the minds of others for that person to be engaging in sex, with the confines of the other aspects of the charmed circle.  On the other hand, a person with no bodily control is seen by the majority as not just not acceptable sexual participants, but as not even in the game.  Some of these distinctions become clearer when we consider the other binaries that are featured in Rubin’s charmed circle.

Note: just as I was posting this, I stumbled across a paper which has used the charmed circle model to illustrate a hierarchy of ability.  I haven’t read it yet but about 2/3rds the way you can find an image of this.  It doesn’t fully illustrate the point I make in the previous paragraph but it does show that the more disabilities you have, the more unacceptable you are seen as being.

Additionally, if we accept, as we should, that disabled people are sexual beings, we must then decide where they fit in terms of the charmed circle.  In Rubin’s model, it seems we would tend towards the outer limits simply because of how sex plays out given our particular disability.

Marriage

According to a variety of different reports from the last 50 odd years, disabled women are less likely to be married than non-disabled women.  Interestingly this divide is smaller when it comes to men.  From the point of view of having charmed sex, this means disabled women would have to wait longer, or forever, to have sex.  There is also evidence that in heterosexual relationships, disabled men are more likely to maintain their relationships whereas disabled women tend to find their partner leaves them.

Returning again to the 44% of people who haven’t had sex with someone with a physical disability and probably wouldn’t, we are left with just over half the population to consider relationships with, and if you are heterosexual that figure roughly halves, if you are of a sexual minority then you’re really limited, especially given some of those people will already be in relationships.  And if you manage to find that needle in a haystack, not only do you have to date them, you have to both want to marry each other as well before the sex is considered acceptable.

Couples only

For Rubin, this excludes masturbation.  As we saw with marriage, this could leave disabled women in particular unable to have any form of acceptable sexual experience.  There is also the consideration of facilitated sex:

“Where sociocultural mores and the law broadly support a normative image of sexuality as heterosexual, private, ideally reproductive, and above all autonomous, facilitated sex—which by definition cannot be wholly private or self-directed—all too clearly draws attention to the difference of anomalous bodies. If the public discussion of sex and, more particularly, sexual variation is still a strong taboo in many Western societies, then the very notion of such hands-on involvement is even more disturbing.”
– Shildrick

This also brings up some legal aspects which Shildrick expands on:

“Although consensual acts of homosexuality are no longer always a crime in many Western jurisdictions, a homosexual act remains illegal under the Sexual Offences (Amendment). Act 2000 in the United Kingdom, for example, if it takes place in a situation deemed to be not private. Given that the presence of any third person or persons is understood to break that privacy condition, then clearly gay disabled sex is, strictly speaking, illegal if it is facilitated by a personal assistant whose physical presence is required.”

Procreative

This assumes that all people are fertile, would make good parents and want children.  I want to be clear here that disabled people can be parents and can make amazing parents, that is a stigma which would be an entire discussion on its own.  But not everyone can be.  I can’t dress myself, let alone a baby and I certainly couldn’t life one or safely hold it.  I also don’t want to pass on my genetic condition.  These are choices I have made due to living with my particular disability.

I would also argue that many people assume that disabled people are not having procreative sex but I have lost the research I read about perceptions around disability and parenting…

To privilege procreative sex also turns sex into a goal orientated activity.  One which is phallocentric and by necessity requires male orgasm and penis in vagina sex.  Extending this idea of goal orientated sex, one which is prevalent in our society where the goals is penetration or (normally male) orgasm, the idea of sex as a destination is one that troubles me and seems to take away pleasure.  Penetration as goal rules out anyone who can’t penetrate or be penetrated and there are so many reasons why disabled and non disabled people could find themselves in that situation, whether as a one off or ongoing.  It also dismisses other pleasurable parts of sex and also, a lot of penis in vagina positions are physically demanding in a way that other activities might not be.

Bodies only

Sex toys and things like sex swings and positioning aids are all ways in which disabled, and non disabled, people can have a satisfying sex life and the stigma around them has lessened since Rubin’s writing in 1984.  But there is still some stigma and reluctance to discuss sex toys which impacts on those of us more reliant on them.  If you have hands which don’t function well or you can’t get an erection or need help positioning yourself then sex toys can come to your rescue.  Whilst non disabled people use sex toys, for some disabled people they can be the difference between sex and no sex but again place the disabled person in the realm of unacceptable sex, at least in the 80s.

In private

This requires that you do not live in a group home or sheltered housing or anywhere were you have limited privacy.  Deinstitutionalisation has made it more likely that a disabled person has a home space but having carers and other types of support can limit your privacy, even within your own home.  It also pulls in ideas we saw when we looked at couples only.

Disabled people often feel an additional pressure to play out all intimacy within a private sphere. I have heard time after time stories of disabled people being out in public with their partner and being assumed that they are actually a paid for carer.  Further, if the couple hold hands or kiss, the common narrative either feels pity for the non disabled partner, congratulates them for being an amazing person or pressurises the disabled partner to feel grateful that they are loved.

“Whilst law may allow women with disability to participate in sexual activity, society tolerates it only if it remains in the private sphere.”
– Dunn

Free

This is a more controversial area and not one I want to go into right now but some people who have disabilities have argued for the right to use sex workers to meet their needs.  When society is set up in such a way that disabled people are not seen as sexual it can be difficult to find someone who wants to have sex for free.

Disability Now conducted a survey in 2005 which revealed that 22 per cent of disabled male respondents (compared to an estimated 10 per cent if you look at the whole male population) reported having paid for sexual services compared to just 1 per cent of disabled women. Similarly, just 16 per cent of disabled women had considered paying for sex compared to nearly 38 per cent of disabled men.

Alternative charmed circles

If we accept the idea that some types of sex are privileged over others then the charmed circle could be considered as a model for this, although I do find the use of binaries objectionable.  One could consider instead an array of spectrums, for example marriage being highly privileged by our society, couples who live together coming next followed by long term relationships followed by short term relationships and sex with strangers featured at the other end of the spectrum.

If society is set up so that one of the binaries in the charmed circle is able bodied and disabled, then I would argue that in reality there is again a spectrum.  Someone who has an invisible disability is privileged over someone who has a visible disability.  And someone who can still partake in ‘traditional’ sex would be privileged over someone who, for example, has very limited bodily control.

NB, I am not advocating for a spectrum here, I am noting that in my experience and hearing from others, that this spectrum exists and to ignore it would be to great too large a generalisation about what it means to be disabled and sexually active.

An interesting alternative I found was from Meg-John Barker who flipped the circle so that narrower ideas about acceptable sex where on the outer circle.  This is reached by reasoning that people who have less mainstream sexual identities and behaviours often have more fluid and more diverse ideas around sex.

From an anecdotal and common sense perspective I would argue that the same is true for many people with disabilities.  The nature of having sex with a disability often means increased communication is necessary.  There are also, by virtues of different bodies, a greater number of ideas about what sex is and what sex can be and similarly the use of sex toys and accessories may play a bigger role in sexual activity.

“Some women feel liberated from social expectation as a result of impairment, some men feel doubly inferior.”
– Tom Shakespeare

Having a disability can take you outside of certain societal pressures.  If you are treated as though you are invisible and cannot be beautiful because of your disability, it makes it easier to shun society’s expectations when it comes to appearance.  Being seen through a genderless role, reduces the pressure to perform to your gender.  Of course, these ideas aren’t going to be true for every disabled person and some people may feel even greater pressure to conform to society’s expectations.  If you do defy convention then this may extend to your sex life.  Personally, not being able to have penetrative sex has created space for pleasure-centric not goal-centric sex.

Non acceptable approaches to sex and disability

Flowing through all of the above is the idea that sex and disability should be viewed as acceptable, as good and not stigmatised.  Having set that up, I do want to highlight areas where behaviours are unacceptable as I think this is one of the flaws of Rubin’s model.  She has set up a value based model around how we view sexual behaviours and yet has failed to include consent, rape and objectification which are surely crucial elements of any acceptable/non acceptable model.

Abuse

Disabled people are significantly more vulnerable to abuse, including sexual abuse.  For some people there is something inherent in their disability which makes them vulnerable – a lack of understanding about what’s happening, a physical inability to defend oneself – and having carers and other professionals in your home does create increased possibility for abuse.  In fact a 2014 study found that more than 40% of women with disabilities had been victims of violent sexual encounters.

The 1995 British Crime Survey found that disabled women were twice as likely to experience domestic violence as non-disabled women.  In 2008, Women’s Aid confirmed this was still the case and additionally:

  • “Women with learning difficulties are even more likely to be at risk and the level of violence that they experience is also likely to be higher.  The more dependent they are and the more complex their needs, the more likely it is that they will be at risk, as are women with mental health problems.”
  • “More than 70% of women with learning difficulties are sexually assaulted, a rate that is twice as high as for those in the general population.”

(quotes from Scapegoat by Katharine Quarmby)

Devotees

I’ve written before about disability devotees, that is people who are attracted to the disability or related equipment but just to touch on the subject, Tom Shakespeare sums up the issue quite well:

“Some non-disabled people are seeking disabled partners for reasons we can only be described as exploitative… Disabled people very commonly find themselves the focus of sexual interest from people who find their particular impairment titillating… the person is being treated as an object, and this implies that the relationship is unequal and potentially oppressive: they become a means to the sexual gratification of others, rather than an equal partner and someone whose own pleasure is valued.”
– Tom Shakespeare

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