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Sex & disability

May 19
A graphic of a dark haired man and woman in bed together sleeping

Virginity, Sex, Disability and Safety.

By Disability, The Love Lounge

The Question

Hello,

I tripped upon your organization while looking up sex and cerebral palsy on YouTube. I’m writing to you about losing my virginity, sex, disability and safety.

I am 51 years old, spastic quadriplegic born with cerebral palsy and use a power wheelchair for mobility. I’ve had a couple crushes when I was a teenager and in college but that was it. My parents never talked to me about sex other than the most basic education of how one becomes pregnant and the high school sex Ed.

I would like to experience sex before I die, but I also don’t believe in sex unless I am in a long-term relationship. I have been struggling for many years with several health challenges that have made my cerebral palsy worse and left me with unmanaged chronic pain. Due to my multiple health challenges and many family issues I do not have the ability or interest to go out to bars. I am also scared about my safety in dating a man. For example what do I do if I want to have a little privacy to be intimate but due to disability you can’t get away if it becomes more than you want and the other person doesn’t respect that. What do you do?

I’m really embarrassed to email you this but thankful that there is this platform. I feel like a freak!

G x

 

Our Answer

Hi G,

It took great courage for you to write into us and I’m so glad you reached out. I can feel your predicament here in being caught up in a bit of a moral dilemma. Also, you have some big practical issues which are making it more difficult for you.

It would be useful to know more about your family issues which you say are urgent and making it less likely for you to go out. Understanding this, I may be able to see how you could overcome this. Also, if you have any carer that works with you. As they may be able to facilitate you getting out socially and also make you feel safer if meeting someone.

Hearing your concerns, it seems to me that it comes down to a choice of what is your biggest priority now. Is it about losing your virginity? Or is it doing the act within a long-term relationship or marriage?

Currently, with the situation as you describe, it sounds like it will be difficult for you to be getting out and meeting someone. This can take a lot of  effort at the best of times, so with your family difficulties, meeting the right person could take even longer.  Are you willing to wait quite a while longer to lose your virginity within a loving relationship?

If you don’t want to wait, there’s the option of seeking out a sexual encounter, perhaps not in a relationship. This is where it would completely depend on how you feel going against your current beliefs about the parameters within which a sexual relationship should be conducted.  And if you feel you would be comfortable undertaking such an experience.

a graphic of a mobile phone with a person and lovehearts in white and the background is pink

In the UK a charity called TLC have sex workers who work with disabled clients. Exactly for the reasons you say. They guarantee safety and can offer a ‘boyfriend/girlfriend experience’ too. Here is the link to their website. https://tlc-trust.org.uk/

It may be that you could take it slow and steady rather than going full steam ahead on the first time.  There is a cost to this service and it’s quite expensive but the workers are trustworthy and experienced in working with disabled clients.

If this isn’t a consideration for you, maybe try internet dating to try and engage with someone, building a rapport before taking it further. Again, if you have a friend or a carer you can trust, they could go out with you the first time you meet your date. You mention your fear around someone wanting to go further than you want, and how do you stay safe. You’re right, we are more vulnerable as disabled daters and have to think of more options to keep safe.  I would suggest a friend or carer being in the same location as you, but not sitting near you to allow you some privacy and normality for you and your date. If you needed help,  your friend can keep an eye on things and it would be easy to catch their attention. They can then ‘rescue’ you from any awkward situation.

With internet dating there’s another dilemma we all face. Do we declare our disability openly and attract those who are open to dating someone disabled? Or don’t declare it, attract more people, get talking to some people first, then drop the disabled bomb?!

The world of dating and disability can be a minefield. But it can also be fun. Losing your virginity is an important human right and feeling stopped from doing so is deeply frustrating.  Ultimately, it’s your choice with how you wish to go about it.  I just hope your current living situation allows you to make a free choice. It is your body and your life after all. Do what feels right for you.

Best regards,

Zoe

Keep up to date with all Love Lounge chat and our campaigns by connecting with us on twitter @ETUKUndressing or on Instagram @UndressingDisability  

If you’d like to get our experts advice with your own dilemma feel free to get in touch. 

 

Next question
Apr 09
Stress Impacts Your Libido - a face covered with hands and another two hands pressing down on the side of the head

How Stress Impacts Your Libido and General Health

By Disability, Undressing Disability

This article is about how stress impacts your libido and general health.

What is stress?

When we’re feeling stressed, our body has a physical reaction which triggers the release of cortisol and adrenalin. These stress hormones send us into what is known as ‘fight or flight’ mode. Instead of being relaxed we are on edge, worried or overwhelmed. Everyone has different things that trigger stress but for the majority of people stress impacts your libido, your mental health, and your physical wellbeing.

Physical Symptoms of Stress

Stress is exhausting and lowers our tolerance for many things. Some symptoms of stress are:
• Sweaty palms
• Foggy mind and/or irrational thinking
• Irritability and/or low mood
• Rapid heartbeat
• Shallow breathing
• Insomnia

When stressed, we just don’t have the capacity to be thinking about others, only focussing on ourselves. A lack of tolerance for others, irrational thinking and even aggression can impact our relationships by pushing your partner away. In turn, the lack of closeness can lead to more worry about your relationship and perhaps lead to low self-esteem.

Stress and Libido

Stress can affect both men’s and women’s libido. The stress hormone cortisol disrupts your testosterone levels, which is responsible for men and women’s sex drives. It can also:

• Narrow your arteries, meaning men may experience erectile dysfunction
• Take you longer to become aroused and reach orgasm

When you’re stressed and have worries and thoughts running through your head it’s not surprising that your libido might decrease.
If stress is impacting your libido, trust that this can change. It doesn’t mean your sex drive will be low forever. It can fluctuate at any time and for many reasons. Intimacy may help reduce your stress too. So kisses, a loving cuddle or massage can alleviate your tension and stress. And with time, this may help your libido increase.
Masturbation can be a big stress reliever too, so it’s not just a partner that can make you feel good!

What can we do to manage stress?

When you feel stressed and are aware of the physiological changes, try and take control back by refocusing your thoughts. Ask yourself:

1. What is really going on in this moment?
2. How can I reasonably respond to the situation?

This isn’t easy and will take much practice to regain control of your thoughts.

Here are some tips:
• Slow down your breathing and breathe through your nose, deep into your belly, expanding your diaphragm. Release the breath slowly and forcefully, emptying the lungs.
• You can use mindfulness with your breathing too. Notice the air flowing through your nostrils and how your chest and belly rises. How does it feel? This exercise of thought focus will divert the panic response of fight or flight.

Managing relationships whilst stressed

If you recognise that you’re being snappy and impatient with your loved ones, don’t be too proud to admit it’s happening.
When you’ve got time to collect your thoughts, be honest with them. Say

‘I’m stressed at the moment and know I’m being irritable. Bear with me’.

This will help dissipate their bad feelings towards you, rather than you not admitting it, feeling guilty yet still displaying the unhelpful behaviours! Also just being open and chatting the problem over with them may help you. The old adage ‘a problem shared is a problem halved’ is so true.
• Always remember – talk, reach out, use techniques, seek support! It’s out there.
• Speak to your doctor if stress is impacting your day to day life.

Useful Resources

The Stress Management Society – 30 Day Challenge

Mental Health Foundation – How to Manage Stress

NHS – 10 Stress Busters

 

Keep up to date with all our Undressing Disability chat by joining us on twitter @ETUKUndressing or on Instagram @UndressingDisability.

Mar 10
Different Sexual Tests - a bed with handcuffs and a vanilla ice-cream

Different Sexual Needs

By The Love Lounge

The Question

Dear Love Lounge,

My partner and I have different sexual needs. We are both disabled and before getting together had limited sexual experiences. We’ve been together for almost a year and are very open with each other and comfortable in our own skins. It’s fair to say we really love each other and want this relationship to last. The problem is that there’s one thing in particular that really excites her, and it is a complete turn off for me. I have attempted to go along with it, but she knows I’m not into it and it ruins the moment and causes an argument.

It’s becoming an issue and our sex life is suffering. How do we get over this?

Thanks,

Billy

(Billy’s name has been changed and he recieved a private response prior to this Q&A being published.)

Our Answer

 

Hi Billy,

It sounds like you have a strong, happy relationship despite your different sexual needs. I’m encouraged that you’re very open and comfortable with each other. This will hopefully set you in good stead for resolving this issue.

Sexual compatibility is about the shared feelings that you and your partner have about your needs, desires, wants and beliefs around sex.

What To Do When You Have Different Sexual Needs

Ultimately, you and your partner will have to discuss how far each of you are willing to compromise. This will involve very honest, open, frank discussions. And lots of trial and error. It is vital that each of you always feel respected and gives consent.
If you can work together towards a shared goal, this will help. Set some targets, keep giving feedback about how you’re feeling. It needs to be something that you both are keen to achieve, not something that will make you feel under more pressure. Currently it sounds like you’ve tried to fulfil her need but she isn’t enjoying the fact that you’re not enjoying it. That’s a good indicator that you want your love-making to be enjoyable for both of you and your partner isn’t being selfish about her needs.

The Dangers of Forcing The Issue

With different sexual needs, sometimes one person might think that if the couple tries a particular act many times, the other person will get used to it and enjoy it. This isn’t always the case. Doing this can cause trauma and irreversible damage.

So, the compromise, or solution, that you find together will be whatever you BOTH find acceptable, and perhaps fulfilling for both too. No one should be forced to do something they don’t want to and equally if someone is constantly sacrificing what they’d really want to do, it will build up huge resentment.

What If We Can’t Resolve It?

The key is to recognise that both of your feelings count. When in a relationship with another, your partner’s feelings are just as important as yours. By working within this frame, you will have mutual respect and are more likely to share your honest feelings with each other knowing they will be safe and valued. If your opinion of something differs, that’s ok, but to dismiss the other person’s opinion or feelings as not mattering, then begins a problem which will just push you further apart.

Ignoring the disparity between two people’s sexual tastes will never work. The problem will become bigger and impact on other areas of the relationship. If you are unable to find a mutual compromise, then therapy will help to repair resentments. It will offer a safe space for you both to share your feelings and concerns, without shame, accusation, or guilt. The therapist will facilitate each partner to be heard and will notice patterns and hidden meaning in what you’re both saying. (Learn more about what sexual therapy involves in this episode of Undressing Disability Podcast.)

How sexually different are you?

If it seems impossible to find compromise or your tastes are far too different, it may be time to call an end to a relationship. If you are both unable to satisfy each other, is it fair to stay in a relationship full of resentment, frustration, and angst?

If your different sexual needs were a matter of frequency, and you’re near the desired target of your partner, then compromise would probably be easy to achieve. However, if your partner is into kink and you’re into vanilla and neither are wanting to compromise by doing a bit of both, then it will be much harder to make it work.

Both could set each other free to find a partner whose sexual tastes are more compatible. And therefore, you may be more fulfilled in a different relationship that matches your needs. This wouldn’t be an easy choice and would be the last resort, but sometimes the gap is just too vast.

With your desire to stay together and your openness and love you have for each other; I feel you will manage to have the important talks. Respect for each other will be key here.

I wish you the best of luck in finding a compromise!

Zoe

 

Got a question our Love Lounge team can help with? Get in touch.

Keep up to date with all our latest Love Lounge questions, podcasts, blogs and campaigns by joining us on Instagram and twitter. #UndressingDisability.

 

Next question
Mar 10
My partner hates my vibrator - red and black lacy knickers with a black vibrator positioned on the top

Partner Hates My Vibrator

By The Love Lounge

The Question

Hi Love Lounge,

My partner hates my vibrator and well, I love it and don’t wanna to give it up. I also don’t wanna give up my boyfriend as he’s kind and funny and genuinely a good guy. I have limited mobility in my fingers and have always used vibrators, they hit the spot every time.

I’d never really mentioned it to my boyfriend, but he found one in the bedside drawer and was very annoyed about it. He says I shouldn’t need it now that I’ve got him and stropped off in the huff.  He’s usually pretty laid back, so I laughed thinking he was joking but no, deadly serious.

He isn’t a talker and I’m struggling to understand the issue here or how to approach it with him. Can you help me out?

Thanks, Lisa

(Names have been changed for anonymity and we send a private answer prior to publishing here on the blog.)

Our Answer

Hi Lisa,

Thank you for getting in touch with us. First up, you are definitely not alone! ‘My partner hates my vibrator’ are words we hear regularly at the Love Lounge.

The main reason for this is that a partner can feel inadequate or jealous if you are able to orgasm with a toy easier than you can with them. They might think that you prefer the toy to them. The size of vibrator you use could also make them feel self-conscious about how they physically compare.

The first thing I would suggest is to try and talk to your partner about it. Explain why you like using a vibrator but reassure him that it is not a replacement for him. Explain that you use a vibrator because of your mobility issues and that it makes masturbation easier and more pleasurable.

The next step then could be to introduce sex toys when you are having sex. For example using your vibrator whilst your partner watches. The other option is to invite your partner to use it on you which may help him feel more involved and less threatened by it.

Couples Toys

You could also try a couples’ toy. Here are a few examples of products that you could use together.

The Hot Octopuss Atom Cock Ring is very powerful cock ring and enhances pleasure for both partners.

The Satisfyer Double Joy is a great product that can be used whilst having sex. It can also be used for Solo Play with your partner controlling it using a Smart Phone App.

You could also buy him his own Sex Toy that he can either use on his own or you could use on him.

A good product to start with would be the Tenga Egg Masturbator. The super stretch material gives the user a different sensation when masturbating. There is a wide range of different textures available but this one has little hearts embossed on it.

Another product is the Fleshlight Stamina Unit which is a great Sex Toy for someone with a penis.

Stay Connected.

If you have a dating dilemma or question that relates to sex and disability get in touch. Follow us on twitter @ETUKUndressing and on Instagram @UndressingDisability. You can also join our Undressing Disability Hub for free. It’s a friendly network of experts, researchers and people who have an interest in learning more about sex and disability. There’s free resources to download too.

 

Next question
Mar 10
A woman with a disabled partner - she has brown curly hair leans down and puts her arms around a blonde man in a black top, they look lovingly at each other and smile

Family Reaction To My Relationship with a Disabled Guy

By Disability, The Love Lounge

The Question

Dear Love Lounge,

I need your advice on my family’s reaction to my relationship with a disabled guy. My parents have met my partner numerous times over the past year, and we all get along well. Last month we moved in together and plan to get married. My Dad has suddenly gone a bit weird about it all, asking questions like “Who will put up shelves for you, and who will cut the grass? I’ve pointed out that its not 1950 and that I can put up shelves and cut the grass but he’s still going on about it.

My partner knows there’s something upsetting me but I haven’t told him about my Dad’s comments yet. I’m not quite sure how to handle that conversation as he loves my folks. It’s really upsetting that my Dad is being off when it should be a happy time for us. Help please!

Ellen x

Our Answer

Hi Ellen,

Thanks for opening up about this scenario. I think it is more common than you may think, although that doesn’t make it feel any easier for you!
Being in a relationship with a disabled partner can indeed bring practical problems. But there are invariably solutions to most of them. Your parents naturally want their daughter to be looked after well but your Dad is focussing on what your partner can’t do!

The generations before us had their jobs clearly divided into ‘blue and pink’ jobs. Many of us now subscribe to that notion less and less. Perhaps your Dad’s perception is that to be the ‘man of the house’ you have to put up shelves and mow the lawn. This is how he felt he supported the family and looked after his girls. Doing these blue jobs validated him as a husband and father.

I wonder if it might be worth a chat with him about this way of thinking – as this isn’t necessarily dependent on your partners disability. You could have a non-disabled partner who is useless at putting up shelves!

I would also consider mentioning this to your Dad – what would happen if you married a non-disabled person and then they became a wheelchair user? You would naturally have to adapt to a new way of life as he may no longer be able to do these tasks. I doubt your Dad would encourage you to leave them because they can no longer mow a lawn.

It sounds like your Dad is a little fearful of the future and has gone into fatherly protective mode.
A simple, adult to adult chat to reassure him may be all he needs.

I think not getting angry or defensive will help you. It appears this is really coming from a place of concern from your Dad rather than a place of mean prejudice. A gentle talk, with confidence and assertion from yourself about how you will manage the household and the relationship as a whole, will allay his fears. It’s encouraging that he gets on well with your partner and has known him for a year. Your Dad will have seen the lovely attributes of your boyfriend; those you’ve fallen in love with. Hence why being in a relationship with a disabled partner doesn’t bother you, as it is about much more than practicalities of a disability.

It’s great that your partner really likes your parents, and I can understand why you may not want to disclose your Dad’s comments.  It could hurt your partner and emasculate him perhaps.  Or conversely, he may totally empathise with your Dad and be willing to talk to him to reassure him.  He may express how he contributes to the partnership and what that looks like to him.  His dedication, emotional support, commitment, love – all more important than him making Wimbledon-quality lawns!

And hey, if it’s such an issue, or your partner fancies mowing – he could always get hoisted up on to a ride-on one 😉

Good luck with the chats.  I have every confidence this can be easily sorted with a bit of empathy and compassion from both sides!

Zoe x

Stay Connected

Got a question for our Love Lounge team? Please contact us and we’ll do our best to help. Follow us on twitter and Instagram to keep up to date with all our goings on. Join our Undressing Disability Hub to learn more about sex and disability and to access free resources. #UndressingDisability #LoveLoungeUK

 

Next question
Feb 24
Image of a man wearing jeans undoing his zip

Disability and Male Masturbation Toys

By The Love Lounge

The Question

Hello.

Do you have any suggestions to help with my disability and male masturbation? My girlfriend is awesome but has a much lower sex drive than me. I’ve always LOVED to masturbate but have no use of my hands due to searing pain, therefore, I cant touch myself. It is driving me mad honestly! And I’ve been unable to ejaculate either since a SCI (Spinal Chord Injury) nearly 3 years ago. I have female carers 24/7. Any tips please?

Thanks
John.

Our Answer

Thanks for contacting us John. I have given your question about disability and male masturbation toys a bit of thought. There are few different male masturbation products that will hopefully give you a pleasurable experience and help you to reach orgasm on your own.

The products I have listed below do not need a lot of hand dexterity. Here is some information about them and links to where you can purchase.

Male Masturbation Products

  • The Quest range of products has been developed by Enhance the UK and leading sex toy manufacturer Rocks Off. It features two masturbators for people with a penis. Elevate is a stretchy cock ring which can be used over the shaft or fingers while accommodating all body types to maximise sensations.

 

  • Quest also features the Discover wands which can be used in multiple different ways including as a penis stroker thanks to one of the detachable heads.
  • A boxed "Elevate" sex toy from the quest range. The box is orange, purple and blue, and the sex toy is displayed on the front.The Hot Octopuss Pulse range of products were designed for people with SCIs’ in mind to help them reach orgasm and ejaculate. The Design of the Pulse toys even work if you do not have an erection. They require no use of hands once the toy is in place and turned on. Some of the Pulse models come with remote controls which make it even easier to use.

 

  • Another option is the Suck O-Mat 2 Sucking machine. Once the penis is in the sleeve it gives hands free pleasure. It can be controlled by remote control so can also be controlled by your partner as well. It is mains powered which means it is powerful, producing up to 200 suction impulses a minute.

 

  • The Handy is marketed as the ultimate Hand Job machine which is another powerful mains powered Masturbator. The Handy comes with a dotted sleeve but can also be attached to other sleeves. It can also be controlled over the internet and also synchronised to some of the videos on the website. The handy is also compatible with a VR Headset.

Disability and male masturbation - the Handy

  • There are also products like the Ferticare 2.0 which is a powerful medical vibrator which has been designed to help men with spinal cord injury to achieve ejaculation.

 

I know a lot of men who have Spinal Cord injuries cannot ejaculate and even using these products may not change that. I would also recommend talking to your doctor before using the more powerful toys to rule out the possibilities of any complications with your SCI i.e. Autonomic Dysreflexia.

I hope this advice helps and if you have any other questions please feel free to get back in touch.

Kind regards

Damian

 

Send Your Questions To The Love Lounge

The Love Lounge team are here to help so get in touch if you’d like advice or need more information on a topic.

Our panel of sexperts have a range of different disabilities, experiences and knowledge. We’ll do our utmost to find a solution for your dating dilemmas, sex education questions or  relationship worries. Please don’t be shy about asking a question, we genuinely want to help. All questions are answered privately, and then we remove any personal details and publish here on our blog with the goal of helping others who may be searching for similar insights.

Stay Connected

Follow our Undressing Disability campaign on social media. Find us on twitter @ETUKUndressing or on Instagram @UndressingDisability. #UndressingDisability

Next question
Feb 17
Sex when you have a live-in PA A man kisses a womans neck as she lies on a bed, their hands are entwined

Sex when you have a live-in PA

By The Love Lounge

The Question

Hello,

My question is about sex when you have a live-in PA as I worry about the thought of having sex when she’s around. I’ve been a wheelchair user for 8 years and haven’t had a sexual relationship in this time. It has become a big issue for me because I always have a live-in PA.

I worry about how I can have sex – either in a relationship or a one-night stand because I don’t know how the logistics will work. I’m not very sexually open/confident and the thought of my PA knowing I’m having sex in the other room freaks me out.

Also, would they have to get me on the bed in preparation? I just feel it’s going to ruin any sexy moment and what will the guy think of me? I’ll feel unsexy and like a child being helped.

Hoping you can give me some advice or support if you’ve had any experience of this before?

Steph, 30.

Our Answer

Hi Steph,

Thanks so much for writing to us! We often get asked this question about sex when you have a live-in PA.

There are a couple of things here; how close you feel with your live-in PA and if you have different ones? And, about owning your right to have a sex life. At ETUK we believe everyone has the right to have a sex life, no matter their situation!

So firstly, try and work on your confidence to be able to tell your PA what you want or need. Say ‘I want this to happen and I’d love for you to make it easier for me as I’m embarrassed’. They are there to enable these things to happen. You don’t have to worry about what someone else is thinking, it’s not their life. This is yours.

Expressing your Needs

I understand it may feel difficult to be open with them, making yourself emotionally vulnerable. But you can say as much or as little as you want to, whilst keeping yourself safe. I have found that being open and sharing things I’m embarrassed about can feel like the most scary thing. However, once you’ve let it out of your mouth and someone reacts kindly to it, it’s the most liberating thing ever! And you will then be confident to share more!

The Logistics

This is where the relationship with your PA will play a part. If they change and you have a favourite, start discussing it with that one and plan for the ‘event’ to happen when they’re staying with you. When you’ve done it once with one PA, then I’m sure it will be easier to do it again when another is with you. This means you won’t have to restrict sexy time to a particular week!!! Your live-in PA can always go out for a couple of hours so you have sex in complete privacy. But if that’s not safe for you, tell them turn their TV up! 😉

As for help in the bedroom, I don’t know your mobility needs but perhaps the guy you have sex with will be happy to help you. It can become sexy in itself… moving you on to the bed, kissing you in between stages…keeping the excitement going. Blokes like something different! And then he can undress you if you need help. This can be as slow or fast as you want – it can all be very tantalising.

Have confidence that if he wants to have sex with you, he won’t be worrying about the logistics of getting there! Don’t apologise for it, and JUST HAVE FUN!!!

Hope this helps.
Zoe x

 

Next question
Feb 15
A starry sky

My Vagina is The Star – Kiruna’s First Smear Test

By Disability, Undressing Disability

A guest blog by Kiruna Stamell.

I am a dwarf woman, a little person, person of restricted growth, person of short stature. That is my ‘thing’. Or the ‘thing’ people focus on.

As a result, I had this long-held belief that I had received my ‘lot’ in life. You know, I had my ‘thing’. I been served my life’s challenge. Somehow this made me arrogantly believe I was superior to getting cancer, herpes, murdered by a serial killer or being struck by lightning. I was simply too unique to be touched by common problems.

I am not alone as a disabled person in this thinking. It seems to be a common idea amongst us disabled folk and reinforced by non-disabled people that we already ‘carry our burden’. We are externally defined by our impairments so often, we too subconsciously internalise the belief, that our impairments are our [winces] ‘thing’.

So, a vaginal or cervical cancer thing was not on the list of things to worry about.

The ‘woman’ part of my identity felt flimsy, secondary to the desexualised label of ‘dwarf’, but she’s always been there. And one day, I woke up to the reality that my health isn’t just about my impairment.

I don’t know what happened, but I think it was a desire to feel like every other woman. All my average height and non-disabled friends were having their vaginas looked at and I wanted someone to look at mine.

Also, I had had a period refuse to stop and thought this was weird. So did my doctor.

My First Smear Test

The first challenge was that I was a virgin, and the doctors were funny about putting a speculum inside a virgin. I think, this is why I got sent to a proper gynaecologist straight away.

I was not so precious. I liked that my vagina was getting a lot of attention and being taken seriously. It took the medical focus off my height. All eyes were on my foof, and my foof was equalising!

At my first smear, lubricant was liberally applied. This was really helpful.

There were a couple of challenges:

  • The building was an old hospital, so door handles were too high for me to open, so I had to be escorted through the building.
  • Getting onto the bed was a challenge. Doing it gracefully and with no knickers on more so, as for me it was a literal climb. They made a step up onto it out of a chair and a smaller step stool.

I discovered that my cervix sits very high up and to the front. I’ve remembered this detail for all subsequent smears, telling the nurse saves so much time!

I find the weirdest bit is when the speculum parts. It feels a bit like when the dentist pulls your cheeks apart. Sometimes, my vagina creaks. Not audibly but like a sound you feel in your body. On a good cervical smear day, it just opens up and if to say ‘wow’. These occasions are rarer, and I only really remember that happening with the lube.

I find it reassuring getting a smear. I find it a really good reminder that being a ‘dwarf’ isn’t my only ‘thing’. I feel connected to humanity knowing I need to look after my sexual health as much as anyone else does.

When I am on that bed getting a smear, my vagina is the star. In that moment it is the most unique thing about me.

Cervical Screening Campaign

Learn more about our Cervical Cancer Red Tape campaign. which aims to remove the barriers that many disabled women face when accessing cervical screening and sexual health services. Search hashtag #CervicalScreeningRedTape to join the conversation and follow us on Instagram and Twitter.

We hope our tips for improving access to cervical screening make a difference. If you work in the healthcare sector please feel free to share them with your network.

 

Jan 20

Cervical Screening and Deaf Awareness

By Disability, Undressing Disability

Cervical screening saves lives and its so important that women have regular check-ups. So why did a survey by Jo’s Cervical Cancer Trust highlight that 88% of disabled women found accessing a smear test more difficult because of their impairment? Claire, our Deputy CEO shares her experience of cervical screening as a deaf woman.

6 Monthly Check Ups

A few years ago, I had to go for cervical screening tests every 6 months. It definitely wasn’t my favourite way to pass the time, but I know first-hand how essential it is. You see a smear test showed that I had moderate to severe abnormal cells caused by the HPV virus. Luckily for me it was picked up and I had laser therapy to destroy the abnormal cells. Now that’s resolved I go for a smear test every 3 years and hope for a positive experience. Unfortunately, a lack of deaf awareness frequently creates problems. As a result, I battle with feelings of anxiety before, during and after the test takes place. And I’m not alone. A study by Jo’s Cervical Cancer Trust found that 88% of disabled women found cervical screening tests difficult because of their impairments. Something needs to change!

My First Smear Test

The first time I had a smear test I didn’t really understand what was going on. I’m sure that’s common for many women but when you’re deaf there’s extra things to feel anxious about. For example, at my doctor’s surgery the examination room is right next to the busy waiting room. Before my smear test the nurse left the room for me to get undressed. She said she’d knock to make sure I was behind the cubicle curtain before coming back in. As I can’t hear the knock on the door, I felt panicked that I’d be exposed.

I explained that I was deaf, but unfortunately the nurse didn’t adapt her behaviour to ensure I was properly briefed. When preparing for the test she kept turning her head away to organise the equipment. This made it impossible to lipread, so I lay there with my anxiety growing by the second.

Once my knees were up and a sheet covering me, I couldn’t see what was about to happen. I knew she was talking to me, but I couldn’t hear what she was saying. I said “I can’t hear you” and instead of moving her head so I could lipread, she just stopped talking.

When she inserted the speculum there was no warning, so I tensed my body, and it was really painful. (I’m told by hearing friends that the nurse tells you when it’s about to be inserted and whilst it may be uncomfortable it usually doesn’t hurt.)

I also left the test with no idea of when to expect the results and went home upset and worried.

Deaf Awareness

My next experience of cervical screening was much more positive. The nurse told me her cousin was deaf, so she had great deaf awareness. Here’s what she did to make the smear test a much easier experience for me.

1. She explained the procedure from start to finish before asking me to get ready and lie on the bed.
2. Whilst explaining she maintained eye contact, used gestures, and demonstrated with the speculum what would happen. When I didn’t understand one part, she got a pen and paper and wrote it down.
3. When leaving the room for me to get undressed she said she’d be back in 5 minutes, rather than saying ‘she’d knock’. I looked at the time on my phone, got ready and waited.
4. We agreed that she would tap my leg as a sign that she was about to insert the speculum, giving me a moment to relax and prepare.
5. She understood that I was very anxious because of my previous experience and reassured me.

Make Appointments, Not Assumptions

If you are deaf and have never had a smear test, then please don’t be put off by my initial experience. Cervical Screening saves lives. My aim of sharing such a personal insight is that it will help bring about change, and help the disabled community have equal access to the services others access easily.

For medical professionals reading this hopefully my tips will be useful and improve deaf awareness within your surgery or clinic. Find more insight on our campaign page. 
#CervicalScreeningRedTape

Follow Our Campaign

Read more about our #CervicalScreeningRedTape campaign and follow us on twitter @ETUKUndressing and Instagram @UndressingDisability.

 

Worried about Cervical Screening?

Visit the Jo’s Cervical Cancer Trust website where you’ll find lots of practical information, advice and a forum where you can pose questions and share experiences.

Jan 16

#CervicalScreeningRedTape campaign

By Disability, Undressing Disability

Our #CervicalScreeningRedTape campaign aims to highlight the fact that many disabled women are finding it difficult to access cervical screening.

The Issues

Common barriers to accessing cervical screening are:

  • Disabled women not being offered a smear test as it is often assumed that they are not sexually active and are less likely to need a test.
  • Physical barriers such as a lack of non-adjustable beds in GP surgeries.
  • Fear. Due to a previously negative experience. Or a self-consciousness as their body may differ to what they believe medical staff are used to seeing.
  • Expense. Often disabled women have to travel further than their local surgery to attend an accessible clinic.

Potential Solutions

What can be done to improve access to smear tests for disabled women? Below are four potential solutions.

  1. Recognise that disabled adults can enjoy an active sex life and offer as standard cervical screening and sexual health tests.
  2. Ask what an individual’s needs are. If your surgery does not have accessible facilities that meet the needs of a disabled patient, then have a procedure in place where you can offer an alternative location. This saves both you and the disabled woman a lot of time and effort phoning around. Read Emily’s blog for a real-life example. 
  3. Realise that standard procedures won’t work for everyone. For example, due to physicality it may be easier for a woman to have a smear lying on her side rather than on her back. We are all different, and often know our bodies well. So if it’s feasible to do things differently, be willing to give it a try.
  4. Most women are apprehensive about having a smear test but for many disabled women there is an extra layer of nervousness. Reassurance prior to the test being booked can help alleviate this fear.

We fully appreciate the challenges our NHS is facing during the pandemic and know that wait times may be longer than usual, however we hope our solutions can become best practice.

Useful Resources

Undressing Disability Podcast

Dr Larisa Corda OBGYN and presenter Sam Renke are guests on Episode 2 of our Undressing Disability podcast. Joined by our CEO Jennie Williams they share personal experiences of the issues around accessing cervical screening raised in this #CervicalScreeningRedTape campaign.

 

Blog

Emily wrote about her experience as a wheelchair user of trying to access her first ever smear test in this blog article.

The Undressing Disability Hub

Last year we launched our Undressing Disability Hub which is free to join. It is full of free resources on topics relating to sex and disability. Members include professionals working in the fields of medicine, psychology, and care homes. As well as sex educators and those searching for a safe network to learn and share information on the topic of sex and disability.

Sign up for free today.

Worried about Cervical Screening?

Jo’s Cervical Cancer Trust is a charity which provides information and support on the topic of cervical cancer. Their website https://www.jostrust.org.uk/ is full of valuable insight and they do an incredible job raising awareness and saving lives with their work.

#CervicalScreeningRedTape 

Stay Up To Date

Follow our campaign on social media on twitter @ETUKUndressing and Instagram @UndressingDisability. #CervicalScreeningRedTape

 

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