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Feb 07
Mel and Steve smiling to the camera

Isolation and Loneliness

By Undressing Disability

Isolation is something that can affect anyone at anytime. As part of Enhance the UK’s Loneliness campaign Mel and Steve from Spokz People share how Isolation during the pandemic affected them.  They also introduce the wellbeing programme they have developed.

 

Addressing Isolation and Covid-19 

For many of us, Covid-19 has added to our isolation and loneliness. It has created challenges around finding and keeping PA support and struggling to obtain bare necessities, equipment and services.

Some of us hoped that the experience of lockdown would help others empathise with us more, but this hasn’t been the case. With so many returning to ‘normal’ many of us feel despondent and resigned. Not wanting to get out there and find new relationships. Covid-19 has been traumatic for many of us. Hunkering down at home is usually the safest place to be. But it comes at a cost.

Isolation is a killer. It increases the risk of death by 29%. It carries the same risk of death as obesity or smoking 15 cigarettes a day.

That’s quite some statement. Isolation is something we need to take seriously, especially if it is long term.

Mel and Steve, who run Spokz and Spokz People, have experienced isolation since they have been virtually shielding since March 2020.

“We went without our PA for many months because our PA was unable to maintain distance from those in their circle. We are experiencing burnout and fatigue from juggling 2 businesses. With sporadic PA support, home schooling and the added time and work involved in reducing the risk of Covid-19 entering our home.

In March 2021, we decided we had to take more risks when it became apparent the lack of socialising was affecting our young daughter. Now we meet people outside, but this is challenging in winter.”

 

Wellbeing programme

To support disabled people and their families in isolation, they launched a new online wellbeing community. This programme focusses entirely on reducing isolation and improving wellbeing when living with disability.

The community consists of a forum, chat room, regular live events and Q&As, and videos from disabled people. Including The Last Leg presenter Alex Brooker, disability advocate and Gogglebox star Simon Minty, and disabled influencer and Co-founder of Disability Horizons Martyn Sibley.

Mel is a qualified disability therapist and Steve a mentor. Together they developed a wellbeing programme which provides interactive resources and reflective exercises. Enabling people to work with a peer to improve their mental health and wellbeing. It includes information and tool kits on how to improve self-esteem, build resilience, and manage the many challenging situations being disabled brings.

The new platform aims to remove the many barriers to counselling and mental health services for disabled people. Including access to buildings and resources, the cost of support and the lack of therapist who understand disability.

As many Enhance the UK members know, having a partner who is shielding with you, or who ‘gets’ your concerns about Covid-19, creates a much-needed wellbeing buffer. If you are single, or if your partner just doesn’t ‘get it’, this new platform could be a great source of support for you.

We are continuously adding new content with information and resources on the topic ‘Loving Me’ and ‘Loving others’. Offering additional relationship support alongside Enhance the UK’s. Meeting other people who live with disability in our community is a great way to connect with likeminded people. Including those interested in improving their communication and ability to not be silenced. Finding people we can be ourselves with is vital in maintaining our self-esteem and wellbeing.

Having people around you who don’t fully understand disability can leave us feeling unheard and lonely. Emotions get bottled up and stuck, damaging us physically and mentally in the long-term. This is the cost of isolation that both Spokz People and Enhance are hoping to help address.

 

Get in touch

Visit www.spokzpeople.org.uk/register/ to find out more. We are friendly bunch, feel free to contact us with any questions you have before signing up.

There is an early bird launch price of £150 a year for the first 50 members (use coupon code spokzcommunity25off) and you can pay in 3 instalments. We also just got lottery funding so we now offer a sliding scale of reduced fees for those on incomes under £20,000. We look forward to connecting with you.

 

Spokz People Transforming disability

Dec 15
A graphic of a group of people gathered with music playing, in the forefront a figure stands alone, waving hello

Lonely In A Crowded Room #DisabilityAndLoneliness

By Undressing Disability

Our latest awareness campaign highlights that loneliness is a major issue for many disabled people.

What may not be obvious to everyone is that even in a room of friends and family, people can still feel isolated and alone.

Jennie Williams, CEO of Enhance The UK writes about everyday situations that can be isolating when you are Deaf or have a hearing impairment.

Jennie has long caramel coloured hair, brown eyes and wears red lipstick

When you’re Deaf or have a hearing impairment like me, there are some situations that can feel daunting and a bit stressful. Family gatherings and social get togethers being a prime example.

You see, in a noisy restaurant with background music, or even at home with lots of people talking at once, it can be really difficult to engage in conversation.

Picture the scene. Auntie Mary is sitting to my left reminiscing about when she met Uncle Freddie. My cousin John is chatting across the table to my sister about his new job. My daughter is tugging at my sleeve with a question and the dog is barking in the background. As a hearing person you might find this experience loud and distracting. Imagine how that feels when you’re trying to tune in to one voice at a time.

The thing that most people don’t grasp is that when a D/deaf person puts on their hearing aid or cochlear implant it’s not like wearing a pair of glasses. There isn’t sudden clarity. My hearing aids pick up ALL of the sounds around me whether I want them to or not. It takes time for my brain to adapt and work out sounds and that can be very tiring. Add into this reality the challenge of trying to lipread someone with a big bushy beard, or poor lighting and it’s completely exhausting.

What’s important to remember is that Communication is a 50-50 thing. We’ve all got a part to play. It shouldn’t just be the deaf person, always trying to ‘hear’ everything that’s being said. The statistics show that 1 in 6 people in the UK have a hearing impairment so it’s highly likely someone you know can relate to feeling excluded from the conversation. This barrier can lead to a disconnect and that’s where loneliness kicks in.

So what can people do to make social gatherings more accessible?

Well if you’re a hearing person you could start by asking what a D/deaf person’s access needs are. What would make the environment more comfortable and accessible? Examples are:

  1. Turning down background music
  2. Asking the restaurant for a quiet table
  3. Asking where the best place for you to sit is, so they can lip read you

If you’re the one with the hearing impairment then you could consider educating people by being open about what your own access needs are. Hearing loss is nothing to be ashamed or embarrassed about. It happens to the best of us, myself included, and I’ve found being honest about it helpful.

If a hearing person suggests you should wear a hearing aid because it would make life easier for THEM to be able to communicate with you, that’s not the reason you should wear one. It’s a decision only you can make if and when you’re ready to.

Stay Connected

Follow our disability and loneliness campaign by searching the hashtag #DisabilityAndLoneliness. Join us on twitter @ETUKUndressing and on Instagram @UndressingDisability.

Dec 15
A graphic of a pink and white chalked hand reaching out to each other

Combatting Loneliness – Helpful Links

By Undressing Disability

If you’re following our Disability and Loneliness campaign, you’ll have seen our survey results which highlighted that:

  • 47% of those surveyed said they felt lonely frequently
  • 12% stated they always experienced loneliness
  • Only 20% had spoken with their GP, caregiver or therapist in relation to the impact loneliness was having on their wellbeing
  •  48% turning to friends and family for support.
  •  9.7% feel they had no-one to help and 41% replied ‘Maybe’ when asked if they had a support network to turn to
  • 38% believed that disabled people are the group that loneliness impacts the most
  • 32% believing that it was the over 50’s demographic most likely to feel lonely

Throughout our campaign we will add useful links and resources to this page. In the meantime follow the hashtag #DisabilityAndLoneliness and visit the links below.

The Love Lounge

If you’re feeling lonely following a relationship breakdown or would like to start dating but are worried about rejection or disclosing your disability read the articles below. You can also write into our Love Lounge for advice from our resident sexperts.

Disability, Sex, Virginity and Safety 

Finding the Confidence to Date Again

Dating and Living with Friedreich’s Ataxia 

Why do attraction sparks never go anywhere for me?

How to Become a More Confident Dater

Rejection, Dating and Disclosing Disability

Professional Support and Helplines

You might also find it helpful to visit the following websites or to call their helpline if you need someone to talk to. Please don’t struggle alone, there is help available and it’s always good to talk.

CALM – Campaign Against Living Miserably

MIND – The Mental Health Charity 

SAMARITANS 

WAVELENGTH – Fighting Loneliness

MARMALADE TRUST – Loneliness Charity 

UNDRESSING DISABILITY HUB – our free hub is a network for anyone interested in, or working in the field of sex and disability. Searching through the members there will highlight counsellors and therapists should you want to find professional help.

Stay Connected

Follow #DisabilityAndLoneliness hashtag and join the discussion around our campaign on twitter @ETUKUndressing and on Instagram @UndressingDisability.

Nov 29
a black and white image with half a face peeking through a black curtain

Disability And Loneliness – Survey & Campaign By Enhance The UK

By Undressing Disability

It’s time to talk openly about loneliness and disability and the impact it has on an individual’s emotional, mental, and physical wellbeing.

 

In the last 20 months our charity, Enhance The UK has seen a significant spike in the volume of emails we receive from disabled people about how lonely and cut off from society they feel. Concerned by this worrying trend we knew it was time for action and our loneliness campaign aims to share insight, information, and potential solutions for disabled people who feel isolated and alone.

 Survey and Statistics

We invited disabled people living in the UK to complete a survey asking about their personal experience of loneliness. The results highlighted that of those surveyed

  •   47% said they felt lonely frequently and 12% stated they always experienced loneliness
  •   20% had spoken with their GP, caregiver or therapist in relation to the impact loneliness was having on their wellbeing, with 48% turning to friends and family for support.
  •   9.7% feel they had no-one to help and 41% replied ‘Maybe’ when asked if they had a support network to turn to
  •   38% believe that disabled people are the group that loneliness impacts the most, followed by 32% thinking it was the over 50’s demographic most likely to feel lonely.

When asked what could be done to help disabled people feel less alone the results showed that:

  •   45% believed that the need for personal contact, a hug or intimacy would be hugely beneficial
  •   38% recommended 1 to 1 time with a friend
  •   6% opted for attending organised group events with comments being the importance of a connection to the disabled community playing a positive role in feeling less isolated.

Campaign Aims

Our campaign aims to:

  •       Highlight what the different types of loneliness are
  •   Dispel myths about whom loneliness affects
  •   Have open and frank conversations about how loneliness can affect disabled people
  •   Offer valuable insight and potential solutions to help individuals feel more connected and less alone
  •       Signpost people to organisations who can help

Valuable Insight and Information

Over the coming weeks we’ll be sharing information to help disabled people (and their family and carers) find potential solutions to loneliness. Our team members, who all have a disability themselves, have researched and created the following insights:

  1.     Top Tips – what you can do to feel less isolated and more connected
  2.     Personal Stories – what it’s like to date when you have a carer
  3.     Where to find support – we’ll be signposting you to specialist organisations
  4.     Loneliness and Paranoia – A guest post by Charlotte Faragher
  5.     Undressing Disability Podcast –  Kelly Gordon and Jennie Williams discuss loneliness and dating
  6.     A resource about how to spot loneliness and tips for helping

 

Follow the Campaign

Follow our campaign by searching the hashtag #DisabilityAndLoneliness and join the conversation by connecting with us on Twitter @ETUKUndressing and on Instagram @UndressingDisability

Sep 10
A group of young people, at the front are a young couple holding hands one of whom is a wheelchair user

Disability Inclusive Sex Education

By Sex & disability, Undressing Disability

Tips for teachers to create disability inclusive sex education.

When delivering sex education, it is important that everyone can access the session equally and feel that the content speaks to them personally. All sessions should be inclusive, regardless of whether it is known that there is a disabled person or child partaking in the lesson. Here are a few factors to consider to ensure lessons are as inclusive as possible.

Representation

It is crucial that each student feels represented by the content. Often, resources show diversity in terms of race, age, weight, and gender but disabled children can often feel left out. They do not see anyone that is like them included in the sex education material. This feeds into the stigma around sex and disability. With a subtle change of focus in education, showing a disabled person in the images for example, the recognition that disabled people want and indeed do have sex and intimate relationships can become the standard view in our society.

This representation can be valuable for both sides:

• the disabled person to no longer feel that sex and relationship probably aren’t for them, as it’s not talked about with their situation being characterised.
• Other pupils seeing inclusive sex education can help stop perpetuating the notion that they couldn’t or shouldn’t have a relationship with a disabled person.

Accessible Resources

Not everyone will be able to access the lesson material in the same way. When planning your sessions ensure you have differentiated resources. There are some examples of adjustments you can implement:
• Ensure all videos are subtitled. This is useful practice at any time and for anyone, not just if you know of a deaf/hard of hearing pupil.
• Interactive games/exercises – think about whether these are accessible. Sometimes a small adjustment like a large dice or putting people in groups so they can work together and support each other can make a big difference.
• Providing large print worksheets
These should all be offered as standard, in any lesson.

Be Pupil-Led

You will have worked hard on your lesson plan, but you’ll be writing from your frame of reference. It is useful to be open to suggestions or concerns from pupils. Allow space for them to offer their thoughts and raise points that are meaningful for them. Then listen and respond to those points. It may not fit the direction of your lesson plan, but it could be what is needed by them and where the real learning could happen.

Range of Learning Styles

Ensure each session is delivered in a range of learning styles, so that each pupil gets a chance to learn in the way that works best for them.
Think about Visual, aural, verbal (reading/writing) and kinesthetic ways of learning and share the material in:
• Videos/Images
• Group Discussion
• Activities
If an activity is tricky for someone to do, then ask if there’s a way they think they may like to try it, or check if they’re ok watching someone else do it. For example, someone with poor dexterity may struggle with putting a condom on the demonstrator. They can still learn the right way by watching a peer do it. Also, this could develop into a discussion point for how people would overcome feeling awkward doing this for the first time with a partner if someone struggled.
There is always learning to be had from every situation if the session allows the freedom for discussion.
If every lesson is delivered catering for the different learning styles, then you are already halfway there to being fully inclusive!

Learn More

Keen to make your sex and relationships education lessons inclusive? Then check out our Disability and Sexual Expression training

Contact us directly or you can also follow our Undressing Disability campaign on Instagram and twitter.  #UndressingDisability

 

Sep 08
blurry gold sparkles

Sex and Bodily Fluids

By Sex & disability, The Love Lounge

The Question

Dear Love Lounge,

I’ve got a question about sex and bodily fluids. I’m in a new relationship with a wonderful woman who uses a catheter and a stoma bag. She has a spinal injury. We haven’t yet had sex but have had very small discussions about it.  She says everything will be ok, and she’ll handle it.  But it’s something I’ve never come across before and would like to know more about it before we do the deed. I feel quite nervous about sex and bodily fluids.

Can you help as I don’t want to ask my girlfriend the little details as she doesn’t seem that keen to talk in depth about it – she says it makes her feel unsexy.

Thanks,

Luke

 

The Answer

Hi Luke,

I can totally understand your trepidation around the area.  As it’s a new relationship your girlfriend may not want to risk losing the ‘spark’ by bombarding you with medical details.  Hopefully once you decide to become more intimate, and she sees you’re not put off by it, the pathways of detailed communication will open up.

And it will probably need to, so that you’re aware of what it’s like for her and to be aware of what might happen.  Sex and bodily fluids, when using a catheter and stoma bag can be a concern if you’re new to it.  I have asked for some advice from our friends at the Spinal Injuries Association to let you know what to expect.

 

Catheters

Your girlfriend will have either a suprapubic catheter (a catheter inserted through the abdomen into the bladder) or a urethral catheter. With a suprapubic, it can be taped to the abdomen to prevent it getting in the way.  It can be drained beforehand and then a spigot or catheter valve can be attached to reduce the amount of tubing. This means you can do away with the drainage bag, so it’s more discreet whilst you’re being intimate.

With a urethral catheter, it can be carefully taped away from the genitals, on the leg or abdomen, allowing some slack to avoid causing trauma.  You’ll need to be mindful of your movement in having sex with a urethral catheter; but it should all be ok if taped securely.  It could be dislodged if accidentally pulled, so be careful!  As the urethra is so close to the vagina, both of you may be aware of the catheter rubbing against your skin.  Again, this shouldn’t be a problem but just something to be aware of.

 

Stomas

With a stoma, the bag collects the waste and this can happen at any time during the day or night.  Your partner may want to empty her bowel before you get down to business.  This can be done with suppositories or an irrigation system (water is flushed through the bowel via the rectum, and it flushes out the stool, to clear the lower part of the bowel).  Then, a cap is placed over the stoma so that the bag is not needed while you have sex.   For peace of mind about any leakages with sex and bodily fluids, it may be wise to use a mattress protector anyway.

Hopefully this information will ease your worries, now you know what to expect.  Perhaps opening the dialogue with your partner, with your new-found understanding, will allay her fears of the situation not seeming sexy.  Showing her you’re at ease with it and want to make her feel as comfortable as possible too, should lead to you both having an enjoyable, happy sex life.

Have fun!

Zoe x

Contact Us

Everyone who writes into our Love Lounge receives an email with a private answer to their question. We then anonymise the Q&A and share them here on our website to help others who may be struggling with the same concern.  Get in touch if you’d like some advice.

Keep up to date with all our Love Lounge articles by following us on Instagram @UndressingDisability or on twitter @ETUKUndressing.

#UndressingDisability

 

Next question
Sep 03
A woman holds and red and white megaphone and shouts into it. She has pinned up blonde hair and wears a checked short sleeved blouse

Calling All Occupational Therapists – It’s Time To Talk About Sexual Expression!

By Sex & disability, Undressing Disability

This blog has been written by Katherine Sellors for her fellow Occupational Therapists. The aim is to help break down communication barriers and enable conversations about sex and sexual expression with patients in your care.

Sexual Expression

Occupation is what is meaningful, and it can be argued that nothing is quite as individually meaningful as sexual expression.

Sexual expression is the individual expression of sexual self and interpersonal interactions (emotional and/or physical). It’s a very objective concept but that’s what makes it so great.

It includes:

  • what makes you feel attractive and good about yourself
  • your sexual behaviours and desires
  • incorporates sexual orientation, gender identity and gender expression

Unique to each person it can be such a core part of our identity that it is a protected right under the Human Rights Act. Despite working in a variety of sectors as a profession, OT’s should always be working holistically, meaning we may need to discuss sexual expression no matter where we are working.

a dark haired woman in a red dress holds up a sign that reads Occupational Therapists

Appropriate Practice

Your employer may have policies and procedures in place telling you exactly how to manage these situations when they arise which is great! Unfortunately, if you don’t have these in place, it can muddy the waters on what would be considered appropriate practice. The second place we would look would be our professional standards but unfortunately guidance here is also limited. Fortunately, there is other guidance out there we can use.
One of my favourites is the PLISSIT model or the more recently expanded, or Ex-PLISSIT, model.

PLISSIT / Ex-PLISSIT Model

The premise of this model is that is an acronym of various stages of treatment. First we must give our patients Permission to talk about sexual expression, then we must provide Limited Information meaning we only give them an overview of information that often helps support sexual expression, following this are Specific Suggestions, information for their circumstances and finally Intensive Therapy which is referral to specialist services. Some patients may not need to go through the full cycle and may find their difficulties are resolved after the initial steps, others may need to complete the cycle multiple times for a variety of different needs.

The difference between PLISSIT and Ex-PLISSIT is the concept of permission being expanded through all the stages. So, remember Permission, Limited information, specific suggestions, and intensive therapy.

Recognition Model

A different model is the Recognition Model, the premise of this being we need to recognise our patients as sexual beings and once we have done this, we will be able to feed that recognition into our treatment.

In principle this would be like recognising any occupations our patients may wish to pursue from washing and dressing to writing a novel. We would help them engage in sexual expression using the same clinical reasoning we would to support any engagement. It has been suggested, to do this, we can add the concept of supporting sexual expression to our explanation of OT and what we can help support and then allow the patient to lead from there.

There are other models and guidance for discussing sexual expression in academic journals relating to specific areas of practice such as learning disability, nursing homes and rehab that may be of individual benefit.

This does beg the question “what if I don’t feel comfortable”. It is important we recognise our own comfort levels and areas of knowledge to ensure we give the best care to our patients.

If you truly feel you are not the best person to address this with someone that is ok as the information doesn’t have to come from you. It is important we don’t make our patients feel uncomfortable for raising their issues, so take down whatever information you feel comfortable with and signpost to a more appropriate information source or professional.

It is important to note that this article is not advocating working outside of comfort zones or appropriate practice but to highlight an area of practice that we can be involved in. If you are unsure or want clarification before acting then speak with HCPC, RCOT or your workplace for their clarification.You can also enquire about Enhance the UK’s Sexual Expression Training.

Useful Links

Enhance The UK –
The expert team are experienced trainers, enquire about their Disability and Sexual Expression training.
https://enhancetheuk.org/disability-and-sexual-expression-training/

The Health and Care Professionals Council
https://www.hcpc-uk.org/

Royal College of Occupational Therapists
https://www.rcot.co.uk/

The Undressing Disability Hub

Sign up for free to access free resources and network with others working or interested in the field of sex and disability.
https://undressing.enhancetheuk.org/signup

Aug 12
graphic of a male and female in different sex positions using a liberator wedge

Adaptive Tools for Sex Toys

By The Love Lounge

The Question:

Dear Love Lounge,

I heard about you from some of the sex educators on Instagram. I want to know if there are any adaptive tools for sex toys and accessories that can make lube more accessible.

Cheers,

T.

 

Our Answer

Hi T,

You’re in luck! Yes, there are some great adaptive tools for sex toys and accessories that can make lube more accessible.

Liberator Bonbon

One option is to use a sex toy mount like the Liberator Bonbon, pictured below.

adaptive sex toys - a red wedge shaped piece of furniture with a vibrator on the curved side

The Bonbon is a piece of Bedroom furniture that can help someone who has poor dexterity. The toy is placed in the mount and the user can then mount the toy.  Liberator also make other sex toy mounts including the Axis and the Wanda, 2 different styles of Magic wand mounts which give options of how they are used.

On A Mission

Penis owners are not left out when it comes to adaptive tools for sex toys.  Liberator also make Fleshlight mounts such as the ‘On a Mission’ which give the user the chance of a hands free experience. There’s also the Keon by Kiroo which is an automated Masturbator.

Sportsheets Thigh Strap

Another way of using sex toys is to use mounts and harnesses. The Sportsheets Thigh Strap can be used to attach a dildo to the thigh of a seated person. It’s a popular choice for wheelchair users.

Some people prefer sex toys with a suction base so they can stick the item to a smooth surface. This enables them to mount it, giving a hands free experience.

LaPalma

Another adaptive tool for sexy toys that can be used to help someone hold a vibrator is the LaPalma mount from Spareparts. (Pictured below)

LaPalma - looks like a black fingerless glove which has space for a vibrator

The user can attach a dildo to the O mount on the palm. The Lapalma also has 2 pouches that you can insert a Vibrating bullet into to make the dildo vibrate.  It is a useful product for those who suffer with arthritis and other dexterity issues.

Lube

There are a couple of ways to make using lube more accessible.

  1. Choose a brand that uses pump bottles such überlube. This is because some lube bottles are made of thick plastic and are hard to squeeze.
  2. Use an automatic lube dispenser such as the Pulse which also warms the lube. The pulse is not cheap but a lower cost alternative is to use an automatic soap dispenser. Be aware that some dispensers may struggle if you use a really thick lube.

Liberator Fascinator

red throw / fabric sheet

Cleaning up after sex can be an issue for some people. One way to make this a bit easier can be to use a throw such as the Liberator Fascinator which comes in a range of sizes.  They are fluid proof and can be thrown in the washing machine afterwards.

If you want something a bit more permanent on the bed you can get fluid proof sheets made from PVC or Polyurethane which protect your bed and are easy to clean up.

 

Learn More

Follow our Undressing Disability campaign on twitter and Instagram to keep in the loop on all the topics and questions we cover from our Love Lounge. If you have a question you’d like answered then get in touch. We answer each questions privately via email, and then make it anonymous and share it on our website to help others who may be too shy to ask.

#UndressingDisability

 

Next question
Jul 14
the hashtag Disability Pride Month written in white on a pink background

Disability Pride Month 2021

By Sex & disability, Undressing Disability

A guest blog post by Damian, from the Undressing Disability Team. Damian shares his personal experience of learning to accept and love himself as a disabled person and why he now celebrates Disability Pride Month.

Damian wears a pink tshirt and leans against a brick wall. He is white with short brown hair and dark rimmed glasses and a light beard

When I was diagnosed with Ehlers Danlos Syndrome (EDS) at 14 years old, I found it hard to come to terms with. I wondered what it would mean for my life. It took me a very long time to “own” my disability and not be afraid or ashamed to show it.

I think it was hard when I was first diagnosed as I had to give up a lot of the things that I enjoyed doing, like running and playing football. There was nothing in the way of support or guidance back then.  Looking back now, I think I was affected more than I realise by the fact that I did not get to finish my last year at school. The school decided it wasn’t safe for me to be on the premises after I slipped down a couple of stairs on my crutches. They had no interest in making things more accessible for me so I had to leave and was only allowed to sit a few of my exams. To be honest it was hard getting people to accept that I had a disability. Back then, hardly anyone had heard of Ehlers Danlos Syndrome so the fact I had to leave school and was seeing my friends less made it really hard. I missed out on a lot of the experiences teenagers usually get to enjoy.

“I tried to hide my disability”

Some people thought I was making my condition up as there was nothing to see. That’s possibly one of the main reasons I began to hide my disability as much as I could. I would only tell a small amount of people and that was usually if I absolutely needed to.

I wear support braces on most of my joints and always used to wear clothes that covered them up. If people could see my wrist brace, for example, I would just say that I’d sprained my wrist instead of explaining about my condition.  I would only ever wear shorts on holiday as I did not like people seeing my knee braces. But I was still worried about what strangers would think about seeing me like that.

It took nearly 20 years for me to be more confident about myself and my disability.

Now I am very much of the thinking that if I have to wear braces and supports, I want people to see them.  I quite often wear ones that stand out so it’s not unusual to see me wearing pink wrist supports. It makes me more confident about my disability and I guess it helps others to be more aware of me. Hopefully they can give me more space and not bump into me.

My brightly coloured accessories become quite a conversation starter at times and I am now happy to talk about my disability. It is something I will not hide ever again. It plays a big part in who I am. I wanted to write about this for Disability Pride Month as I know that whilst some people are posting on social media about all the things they are proud of, others will be lacking the confidence to do that. I hope in sharing this it helps in some way. To see what others are sharing search the hashtags #DisabilityPrideMonth or #DisabilityPride. 

I now speak passionately about being disabled and I’m very proud of who I am.  Part of my role here at Enhance The UK is to answer questions for the Love Lounge and by helping to run the Undressing Disability campaign. Joining the team at Enhance the UK has given me both confidence and a platform to talk about my disability and experiences in the hope of helping others realise they do not have to hide their disabilities.

Throughout the month of July we’re sharing posts on our Instagram Stories that relate to #DisabilityPrideMonth with the aim of bringing together the disabled community so we can celebrate, and learn from each other’s experiences. Follow us @UndressingDisability.

 

Stay Connected

Keep up to date with all our latest news, insights and resources by joining us on twitter @ETUKUndressing and Instagram @UndressingDisability.

The Love Lounge is a free service offering advice on questions relating to disability, sex, dating and relationships. Get in touch.

Jun 16
condoms against a blue background

I hate condoms

By The Love Lounge

The Question

Dear Love Lounge,

I’m 23 and in a new relationship. I had cancer aged 12 and lost my right leg from the knee down. I’m comfortable in my own skin and after a few pints I’m confident enough to chat up girls and get laid. I’ve been dating someone I really like but she insists on using condoms, and I really hate condoms. I still have check-ups, but the specialist is God fearing and ages with my Grandad, so asking questions about sex feels weird. I reckon with all the chemo I had my tadpoles will not be champion swimmers. How can I find that out so we can ditch the condoms?

Cheers,

Joe.

Our Answer

Hi, thanks so much for writing in!

Honestly? You’re probably not going to like my response but, until your relationship is more established, I think your partner has a very good point. Condoms don’t just prevent pregnancy, they prevent STI’s too. As well as having sex, a new relationship is about gaining trust. And regardless of how many check-ups you have, your girlfriend probably just wants to keep herself safe – and good for her!

What do you hate condoms? If it’s the fit or feel, there are loads of different sizes and textures on the market. Try and be playful about it, seeing which ones feel the best for both of you. Find out where you can get free condoms via this NHS link. 

three condoms in blue, red and silver wrappers

Then, we’d suggest attending your next check up with your girlfriend. Ask to see a different specialist if possible to talk about the impact chemotherapy may or may not have had on your fertility. Or just drop in at your local sexual health clinic, where you can both chat about your worries, concerns, and explore all types of contraception. Only condoms protect against STIs though, so that part really is a trust thing! Build on that, and the rest might just follow. If you sign up to our Undressing Disability Hub for free, you can access our free resource on all types of contraception.

Love Lounge Team x

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We get lots of questions to our Love Lounge. We answer each individual one privately, then make them anonymous and publish here to help more people. Use the search box on our website to look for a specific topic e.g. disclosing disability, or accessible sex positions. If we can help you, then email us. 

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