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.

View this post on Instagram

A collection of spoonie sex tips that you all gave on the collab I made with @frankietastic ✌️&❤️ Eva xx ID: 10 images showing “Spoonie Sex Tips”: 1. Communication (talk before, during and after sex about what worked and what didn’t) 2. You don’t have to (we have to get over feeling guilty saying no when we’re unable to have sex because of our health) 3. Talk to someone (your physical therapist or a sex therapist) 4. Sex aids (vibrators, dildos, sex swings and flesh lights) 5. Provisions (have water and sweets on hand) 6. Positions (experiment to find what’s right for you, start by spooning) 7. Instead of sex (not just penetration – oral, masturbation, voyeurism, massage, porn, tantric, kissing, dirty talk, instructing) 8. Spoonie support (mobility aids and strategically placed pillows) 9. Dull the pain (physical pain – not emotional with ibuprofen, warm baths, also alcohol or weed – but set limits when sober) 10. Take it slow (it’s not a race) #WheelyGoodTime #StillDisabled #StillSick #Art #Quote #QOTD #Disability #DisabilityAwareness #Disabled #ChronicIllness #Spoonie #Disabilities #Accessibility #ChronicPain #DisabilityRights #SpoonieLife #DisabilityAdvocate #DisabledPeopleAreHot #TheBarriersWeFace #AbleismExists #DisaBodyPosi #BabeWithAMobilityAid

A post shared by Eva (was wheely_good_time) (@elr.designs) on

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.