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Blurred out images of people on a bed with scrabble tiles in focus reading sex

Spinal cord injuries, intimacy, and sex

By Sex & disability, Undressing Disability

The support around spinal cord injuries (SCI) and sex isn’t great, and often isn’t even provided. Sex and intimacy are a huge part of a person’s life and will be impacted by this type of injury.

We spoke with Ian Hosking about his injury in the hopes that hearing advice from someone else in a similar situation may provide you with some support.

 

Meet Ian

Ian is a 52 year old man who currently lives in Wendover, Buckinghamshire with his wife, son, step-son & step-daughter .

At 34 years old, Ian and his then wife were in a car accident, leaving them both with spinal cord injuries, and Ian became tetraplegic paralysed from the chest down. Changing his life for ever.

Of course, this wasn’t easy for Ian to adjust to initially, however it didn’t stop Ian enjoying the activities he enjoyed. Amongst other things, Ian has a love for Wheelchair rugby, he played for 16 years and is now the chairman & player with Stoke Mandeville Maulers wheelchair rugby team.

Another of Ian’s passions is helping others with a SCI to regain confidence and navigate a new and unexpected journey. He has done a lot of work with the Spinal Injury Associations which includes delivering talks to organisations and groups.

Eighteen years on Ian has created a new life for himself and offers some great advice that could be useful to hear.

 

dimmed lighting, laptop on in the background with a heard shaped ornament on too and a candleOnline dating

Adjusting to an injury of this extend is difficult, and every situation is different. It caused a huge strain on Ian’s first marriage, resulting in separation for the pair.  After this, Ian tried online dating where he met his current wife 10 years ago. We wanted to get Ian’s opinion on when and how to tell your matches about a SCI.

Firstly, don’t feel pressure to advertise being a wheelchair user in your bio but also don’t hide it. After all your injury isn’t who you are, just a part of it. With a SCI, it isn’t always easy for someone to notice, especially if the pictures you are using are of you sitting down or from a certain angle.

However, as Ian suggests, it’s probably not a good idea for you not to hide it either. Ian would often talk about playing wheelchair rugby, which is a pretty good indicator. If someone stops speaking to you after this, then they likely weren’t the right person you would want in your life anyway!

We have a Love Lounge question answer more about disclosing disability when online dating that you might find useful.

 

Taking time to adjust

After the car accident, all Ian remembers is waking up in the hospital with his hands not working fully and with out being able to feel three quarters of his body. Now he has learned to use the function in his hands as best he can and is paralysed from the chest down.

One of the things Ian had to adjust to were leg spasms. With a SCI, the muscles are no longer responding to brain signals. Therefore, involuntary spasms can occur. This can be frustrating, you can take medication to reduce it but there is no way to stop them happening. Ian decided not the take ant medication and to just cope with the spasms.

Another adjustment is the loss of control over bladder and bowels. Accidents can occur, which obviously is not a pleasant experience. Ian says he was lucky as before his incident he didn’t have any issues with his bladder and bowels, therefore making it slightly easier to pre-plan his bathroom visits. However, this is not the case for everybody and will take a varying amount of time to adjust to these changes.

 

Ians advice

The number 1 thing is to be patient with yourself. You are relearning your body, and this takes time. You may find you now have different values and purpose. There is no ‘right way’ to adjust, so take time and learn what works for you. In time you will have new ‘normal’ routine, which many people establish through rehabilitation and support from family and friends. Which takes us on to having patience with your loved ones, communication is key.

Yes it is your body, but it will also impact the lives of those you are close with. Having an understanding to how others may react will go a long way. The people in your life will want to help, and any conflict or frustration can most likely be solved through an open and honest conversation.

Another piece of advice would be to stop trying to avoid problems and try solving them instead. What could a potential solution to your issue be? And if that doesn’t work then maybe something else will.

 

Intimacy Blurred image of someone lying on a bed. There are scrabble tiles in focus reading sex

Ian says the need for communication and honest conversations after a SCI made sex more intimate. The first step should always be honesty with your partner. This will also help relieve any nerves – which are completely normal for someone to experience around intimacy after an injury.

Planning your sex can be beneficial so you can make sure you have been to the bathroom beforehand and prepared yourself mentally if necessary.

One thing to consider and talk about with your partner is positions. This will depend on the level of injury as everyone will have different capabilities.

There are various medications that can taken which allows a male to become hard. Each with different strengths and side effects. For example, some medications will remain in the body for longer, which as Ian pointed out, is not ideal when it’s the next day and you’re trying to get about your daily life. It might take some trial and error to find what works for you.

 

Focusing on the positives

It goes without saying that adjusting to a SCI will be challenging, but Ian was determined to not let this change him from a happy and positive person.Ian and Lenny at his concert

He even laughed about how it can actually have many benefits. Like him and his wife getting priority seats to a past Lenny Kravitz concert resulting in being in the right place when Lenny did a walk around. Lenny then stopping and giving Ian a hug and kissing him on the head!

Ian also gives advice about the positives it can bring to a relationship, specifically being less selfish in the bedroom department. I’m sure many women (and men) can relate to sex sometimes feeling a bit…underwhelming. However, Ian says that his SCI made him more aware of what his partner wanted and liked. Pleasing them became more of a priority as the focus was taken off pleasuring himself.

 

 

Resources

If you have any questions about Spinal Cord Injuries and intimacy, write in to our Love Lounge where we will offer some practical advice to your problem

We also had Dr Mitchell Tepper on our Undressing Disability Podcast, who is a sex educator and coach who specialises in Spinal Cord Injuries.

 

 

Someone holding a pink vibrator. It is larger than their hand

The top five quiet vibrators

By Sex & disability, Undressing Disability

When it comes to good vibes, the ones generating the best buzz are the quieter ones on the market. After all, who wants to worry about noise when you live at home, have housemates or might be sensitive to the sound?

There are a lot of reasons other than housemates why people may prefer a quieter vibe. This can include neurodiverse conditions such as ADHD or autism where you may find the noise distracting or uncomfortable. It may also be difficult to determine the volume levels of a toy if you are deaf or hearing impaired.

Sadly, not all vibes are created equal, so some can be a lot louder than others creating potentially uncomfortable situations all around. However, there are some out there that are quieter than others.

It’s important to note that all toys will have some sound, and the higher the setting, the more noise it will make. That said, toy companies are becoming aware of the need for ‘quiet time’ and creating better options.

Putting the toys to the test

We’ve created a list of the Top Five Toys we rated and recommend for a practically silent session.

Some important things to note about the tester: they are a non-binary person with a vulva so the toys are chosen with this in mind. They are also neurodiverse so sound can be an issue for them.

 

Image of the vibrator and the box. they are pinkThe Smile Makers. The artist vibrator

The artist is a wonderful innovative toy and has become something of a favourite in recent times thanks to its versatility.

This almost silent toy is possibly one of the quietest vibes we have ever sampled although it’s worth noting that it does get louder when the speed increases. However, it’s nothing that can’t be covered with a closed-door – it doesn’t need much.

 

When it comes to speed, the toy has nine pulsation modes, but it’s the way that they can be used which makes it a clever purchase. The toy has two parts: one for insertion and another for clitoral stimulation. It can also be used for clitoral or penetration alone if you prefer one or the other. As clinical as that sounds, dual stimulation toys don’t come to play when it comes to the main event.

It has been designed for vulva owners and does fit the body perfectly, although it is also adjustable in case you need a minor change. It also features two sensors at the side of the toy which allow you to select two different pulsations for either part of the vibe. It’s the truly customisable options that makes it a great purchase.

It’s also easily gripped, waterproof, easy to clean, and also scores bonus points for not being gendered or shaped like a rabbit.

This is a great purchase for anyone who needs a well-designed toy with options.

Rating: 5/5

£107 Shop here

 

Picture of the stimulator. It's purple and in a u shapeAnn Summers. The Whisper Clitoral stimulator

Ann Summers is one of the most notorious sex shops on the high street so it can often be the first venture for beginners new to sex shops. The online store also feels a little less scary than some of the other options out there.

The Whisper is a clitoral stimulator that has two rounded sides that pulsate. It can also be used as a bullet vibe. It’s a great choice for anyone who enjoys a bit of clitoral action or prefers a firmer texture from a toy.  Texture can matter when it comes to selecting the right toy as some people prefer softer or harder materials. The body-safe silicone of Whisper is firmer than it feels and provides the right level of stimulation. It’s a lot easier to grip than a standard bullet too.

The toy offers 11 different patterns and speeds but doesn’t compromise on strength despite its quietness. It estimates that it comes in at 35db which makes it house share ready.

The Whisper toys are great for anyone who might be searching for a starter vibrator but feels a little frightened by some of the tech options out there. It is incredibly easy to operate as you just need to click and go – no fancy app pairing or confusing buttons to learn about.

If a bullet-style toy isn’t your thing but you like the quietness of the Whisper then it’s worth noting that this is a collection. There is also an insertion option which has the iconic Ann Summers rabbit shape. They even have a more classically shaped bullet so you can find what works for you.

Rating: 3.5/5

£48  Shop here 

 

Someones hand holding the turquoise vibrator.Mystery Vibe. Poco vibrator

The Poco vibrator is an impressively designed toy which has been created to feel like a finger. The toy bends into almost a U-shape in the body with a little bit of pressure. It can be used either for insertion or held against the clitoris for extra stimulation.  There are two joints on the toy so you can curve it into three sections which fit your own body or between yourself and your partner.

There is some noise with Poco but it’s nothing a closed-door or light music couldn’t handle. It’s more of a low purr or pulsating noise in comparison to a full-scale intense rumble.

The smaller size of the vibe at 1.6 inches at the widest point, and 5.9 inches long. Making it a great option for anyone who is feeling nervous about making the jump into sex toys – especially anyone worried about noise levels.

For couples who like a technical option, the vibrator can be paired with an app that your partner can control. It’s also waterproof so it can be taken into the shower to mix it up a bit.

The vibe has eight different speeds and 16 different intensities which you can mix and match so it is very difficult to get bored. You can also program it to remember your preferences as well so even if you forget a favourite setting – the vibe won’t.

Rating: 3.5/5

 £90 Shop here 

 

The white vibrator against a beige backgroundDame products. The Com

This has become ‘the one’ in what is a very overcrowded bedside table drawer. The com is a great toy and one of the more quiet ones we have quite literally come across. It’s a fantastic option for anyone struggling with reach, grip or someone who needs a strong pressure or firmer texture from a toy.

 

It’s a truly quiet vibrator that doesn’t sacrifice strength for silence when it gets going. It was impressively silent only letting out a solid purr sound instead of the usual buzz.

The com, despite its design, is actually a clitoral stimulator although it looks more like an insertion toy. It’s designed to fit with the body so the medical-grade silicone is soft to the touch and sleekly contoured. It features five different patterns or intensities so you can mix and match to see what suits you.

The stronger the setting, the better the vibes – trust us on that. As with all vibrators, the noise does increase slightly if you up the ante on the speed but it’s still not that loud in comparison to others out there.

The powerful toy is really simple and quick to use which is great for anyone looking for something easy to hold with intensity. Or something that is no muss, no fuss – just good vibes all around.

Rating: 4.5/5

£125  Shop here 

 

Pink background with the toy in black. It looks similar to a computer mouse in shape Sinful 2 in 1 Bliss

Sinful is one of the quietest multi-use toys out there and it makes a great couples toy. It comes in two parts: a remote and a simple egg-shaped toy with ten speeds. The layout is thankfully simple and it’s really easy to use.

The versatility vibe can be used in many different ways. Including as a clitoral bullet, insertion toy or remote-control option. This means lots of super options for solo or couple play. The different choices with this toy made it fun to use as it felt like the options were endless with it.

The vibrations could be intense but thankfully it does come with a softer side too. The versatile toy also looks discreet and is contoured to the body similar to the artist and com.

If any criticism, sometimes love eggs can be difficult to use if you rely on someone to help you position sex toys or struggle with grip. What goes up, must come down… so all egg-shaped toys like this need a well-attached cord to help them be removed.

We did like that the toy wasn’t gendered which made it more appealing and it came in a neutral colour too. The range on the toy is 10 meters but frankly, we ended up not making it that far apart when testing….

Rating: 4/5

£47.99 Shop here

 

Looking for more like this? Our Undressing Disability Hub has more sex toy reviews for you to browse. Sign up for free here

 

 

Woman with knee high boots standing next to a railing, she is visable up to her waist. The backlighting is pink and blue

Disability and sex lessons from a striptease artist

By Sex & disability, Undressing Disability

“What stripping for people with disabilities taught me about sex”

Ruth Ramsay is a sex educator and coach, but for over a decade was a striptease artist ‘Solitaire’. Here she shares the lessons that performing for audiences with disabilities has taught her about disability and sexual needs.

“Right now I feel on top of the world!”

Peeping out through the stage door, I see the audience are ready for the show to begin.

I’m performing at Extreme Burlesque, a striptease show for people with disabilities. I’m delighted to see many of the women in the audience are dressed-up, with feather boas draped over wheelchairs and sparkly makeup. It’s always more fun as a performer when the audience is into it.

Chatting to some of the ladies later, I become aware there is more at play here than a fun night out. “Thank you for this” one says, gesturing to the glittery corset her carer helped her to put on earlier. “I never get the opportunity to dress like this. I never get to act as sexy as I am inside. Right now I feel on top of the world!”

I hadn’t thought before about the day-to-day barriers people with disabilities may face to express their sexuality. There was also the deeper issue of ‘desire – ability’*: we receive messages from media, culture, caregivers etc about what bodies are approved in our society to feel desire (as well as which are desirable). This nuance was something I had never been aware of before.

Importance of independence black and white image of a woman upside down on a pole. There is smoke to the left of the picture

I’m stood by the stage curtain, ready to step out onto the stage and start my show, and I’m feeling emotional.

It’s a Sunday afternoon at a strip pub in London. I have just been talking to the friend of a young guy in the audience who I’ve seen before on Sunday shifts. He has cerebral palsy, uses a wheelchair, and has limited control over his movements and vocalisation. His friend lines up pound coins on the edge of the table (this is a venue where we collect £1 from each audience member in a beer jug before each show), and he has just enough mobility to knock them into the jug if we hold it just below the edge of the table.

This same friend has just explained his Sunday visits to me. The disabled mans mum – his main carer – thinks he’s at a social club for people with disabilities, with a membership fee. She’s happy to pay, as he comes back so happy and invigorated. She doesn’t know he is visiting a strip pub and the money is going to dancers. “This is the highlight of his month. It’s what keeps him going the rest of the time,” his friend tells me.

Before this I hadn’t properly appreciated before, sexual energy as such an uplifting and healing force: the power of being recognised as a sexual being, welcomed and accepted in an environment that’s all about erotic energy.

Night of The Senses

I’m gazing around me in amazement, my eyes drinking in the scene of naked skin, moist lips, kinky and fabulous outfits and sex acts happening in full sight…

I am at the Night of The Senses, the after-party to the annual Erotic Awards. It’s early in my stripping career, and I’ve just performed in the Awards show. Proceeds go to Outsiders, a charity which helps people with disabilities find friends, romance and partners. The Night is my first-ever raunchy anything-goes party.

Skimpily-dressed people are kissing, caressing and more; there’s leather and whips and toys; the dancefloor is a mass of motion, smiles and laughter. And about half of this sexy crowd have disabilities.

It was an important lesson to me early on, that having a disability in no way necessarily impairs a person’s ability to want or enjoy sexual pleasure. Access to such pleasure should not be dependent on a conventionally ‘functional’ or attractive body. “Of course!”, I hear Undressing Disability readers shout. But nearly 20 years later, it still feels mainstream awareness is lagging behind.

“What, is it off? Already???!”

Blue and pink lit image of aa music deck with a dancer in the backgroundMy final lesson brings us back to my Extreme Burlesque. During my striptease I am allowed off the stage to roam around the audience.

At mainstream venues like this I’d sometimes choose a guy to undo my bra clasp. Usually this involved quite a bit of fumbling and took some time! I admit that in that moment, I assumed that it would take an audience member here a lot longer.

I chose a guy who had the mobility in his arms and hands to attempt the task, and was sat where I could rest on the edge of a table while he took his time. He had a respectful vibe – I didn’t want to get groped – and looked like he had a sense of humour.

Sashaying over to him, I gave him a big smile, then turned my back and pointed to my bra clasp, with a “will you undo this for me?” motion. I settled down in front of him, ready for us all (him included) to have a laugh as he tried to undo it, looking back over my shoulder at him.

He gave me a cheeky grin, then with one hand quickly reached up, pinched the clasp between finger and thumb and pinged it off. It was undone in under a second. Never before (or since) has anyone done that so expertly.

Lesson – do not assume someone’s level of sexual experience and expertise based on them having a disability!

Concluding thoughts

These lessons served me well during my career as a stripper, and continue to now I am a coach. I was taught the healing power of sexual energy; made aware of how many people are denied access to it; saw the importance of feeling desire-able (as well as desirable); and learnt to never make assumptions. Plus so much more that there isn’t space to mention here.

Without these lessons, I might have had fun as a dancer for a few years, then left that world behind. Instead, working with sexual energy became my life’s passion and purpose.

Thank you to all the diverse communities – including disabled, trans, ageing and non-binary – who continue to teach me so much and expand my view of sexual expression.

 

Find out more about Ruth and contact her via her website.

 

*This concept has been brought into clearer words for me by the author and therapist Lucie Fielding, in her amazing book ‘Trans Sex – Clinical Approaches To Trans Sexualities And Erotic Embodiement’. Find the book here

 

Read more like this on our UndressingDisability blog 

Professional advice on sex and intimacy for care home staff

By Undressing Disability

At the Love Lounge we often have emails from support staff and carers who work with disabled people about sex workers. Emails like this…

We have a resident who is 28 years old and is severely physically disabled, he doesn’t have a learning impairment.  He really wants a loving relationship but has a lot of anxieties around sex and intimacy.  He is unsure of whether he can physically engage in ‘traditional sex’ and is unable to masturbate himself.  His anxieties over this have led to him being very depressed and reluctant to date or develop a relationship with someone.  He has had counselling, however said he still doesn’t know about how his body will work or not during sex. He has decided he wants to employ the services of a sex worker to explore what he can and cannot do sexually.  Can you please point us in the right direction of where we can find a sex worker who is experienced with working with disabled people?

Let’s look further…

Now let’s call the above person Chris.  It may be that a sex worker would meet Chris’s needs and would be the best course of action. But sometimes, a person may ask for a sex worker because they are not aware of the other options available to them. We know that Chris has been feeling very anxious about sex which has had a really negative impact on him affecting his mental health. What happens if Chris doesn’t have a positive first sexual experience (through no fault of the sex worker)? This could leave Chris with inaccurate beliefs about what he can do sexually and also add to his emotional distress.

Options available

In this case, it may be useful for Chris to see a sex surrogate, who is working in partnership with a sex therapist. Sex surrogates spend time building an emotional connection with someone to help them become more comfortable. They talk about fears and take a step-by-step approach to intimacy with the focus very much on supporting the client to overcome any issues and difficulties. Sex therapists and surrogates will be able to support Chris’s emotional needs and help him through what can be a difficult process.

It’s not about making the decision for Chris, but as the saying goes, you don’t know what you don’t know. When someone asks for a sex worker it is really important to have an honest and frank conversation.  It’s worth giving all the information about different options and people who can support with sex and intimacy, allowing them to make an informed decision.

 

You can join our UndressingDisability Hub for more information like this. Our Hub is a platform for the disabled community, where we have professionals sharing their knowledge on all things, sex, relationships, and disability.

 

Masturbation March

By Undressing Disability

Give midwives Christmas off by masturbating this March!

Yes you read that right, we want Masturbation March to be about exploring your sexuality, needs and desires.

 

What are the benefits of masturbation?

Masturbation shouldn’t be a taboo, it can actually be really good for you! Here are a few benefits:

  • It is a great stress reliever!
  • It can improve your sleep
  • Helps you understand your body better
  • Masturbation can even relieve menstrual cramps
  • Can improve your sex life with a partner

 

Lube facts

Here are some interesting facts and uses for lube…

  1. It’s great for massage, oral, and sex toys!
  2. It protects the skin from irritation and tearing (especially if you suffer from pelvic pain)
  3. You should use water or oil based lube with silicon toys to prevent them getting damaged
  4. Trying different flavours and textures can be a great way to spice up your masturbation

 

Sex toy reviews

Sex toys are amazing for increasing pleasure during masturbation. We have a whole guide on our UndressingDisability Hub reviewing various sex toys for both penis and vulva owners.

We discuss the accessibility of the sex toys, the pros and cons, and the occupational therapist view so that you know what you’re getting before purchase.

 

Love Lounge

Our Love Lounge is a safe place for you to ask your burning questions on anything dating, relationships, sex, or even flirting.

We will have one of our experts write back to you with practical advice and support.

 

Resources

Pelvic pain can be caused by conditions such as endometriosis. This resource gives helpful insights on ow to manage pain caused by endometriosis, including intimacy advice.

 

‘Wait, what? Pelvic massages exist!’

In this resource, Jo Silby who is a massage therapist explains what sensual massages are and how they can help with pelvic pain. She also gives some tips for performing one yourself at home.

Where to access:

UndressingDisability Hub under the ‘therapy and counselling’ resources section.

Podcast:

For those who prefer to listen, we also had Jo on our podcast!

 

 

For more information on how to manage this pain and improve your sex life, visit here.

Endometriosis

By Undressing Disability

Endometriosis is a disorder where the tissue that grows inside the uterus, also grows on the outside. This tissue behaves like endometrial tissue would and breaks down during each menstrual cycle. However, it has no way to exit the body which has painful effects including irritation, spasming, painful periods, and excessive bleeding.

 

Endometriosis and sex Woman holding a fruit in front of her vagina, she is wearing blue underwear.

Pelvic pain disorders such as endometriosis can have a huge impact on a person’s sex life.

Often people will find themselves choosing between avoiding sex and losing intimacy with a partner. Or having sex resulting in a lot of pain.

On top of this, medication taken for endometriosis can lead to a lack in sexual desire and fatigue. This results in the feeling of guilt due to someone being unable to fulfil their partners sexual needs.

 

Tips

We have collated some of our top tips you can implement with both your partner and on your own.

1)First of all, you should never feel like you need to have sex if it is painful. Feelings of guilt are normal but don’t allow it to pressure you into something you are not ready for.

2) Schedule sex. A common myth is that sex must be spontaneous for it to be sexy, but this isn’t the case. Planning sex allows you to consider your pain relief and prepare making it more enjoyable.

3) Intimacy doesn’t need to be sex. It can be hugging, kissing, spending alone time with your partner. For example, what is your partners love language? This is a great way to show your partner some love without being physically intimate.

4)Being open with your partner about how your pelvic pain affects you can bring you both closer together and help them understand your needs. Communication is key to a healthy relationship so get talking!

5)For some, acupuncture can help with vulva pain.

6)Pelvic massages can be a great way to relieve pelvic pain (which we have a great resource on!)

 

Resources

‘Wait, what? Pelvic massages exist!’Vinyl disk graphics with the text 'Epsidoe 7, Sensual massage w/ Jo Silby' ' Undressing Disability Podcast'

In this resource, Jo who is a massage therapist explains what sensual massages are and how they can help with pelvic pain. She also gives some tips for performing one yourself at home.

Where to access:

UndressingDisability Hub under the ‘therapy and counselling’ resources section.

Podcast: For those who prefer to listen, we also had Jo on our podcast!

 

Sex, Chronic Pain, and Fatigue

This resource explores the difficulties of dealing with chronic pain and fatigue whilst having a sexual relationship. Including our top tips for maintaining a healthy sex life.

Where to access:

UndressingDisability Hub under the ‘sex and intimacy tips’ resources section.

 

Top Tips for Self Treatment of Lichens Sclerosus, Vulvodynia and Endometriosis

Alex from ANA therapies, is a Women’s Health Physiotherapist also specialising in Visceral therapy.  She has put together a ‘Self Help’ guide for people struggling with pelvic pain.

Where to access:

UndressingDisability Hub under the tips for health professionals section

Socials

Make sure to follow our socials where we will be collaborating with other people who have experience with vulva pain, experts in the field, and providing further support.

Instagram

Twitter  

 

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

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.

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.

Charlotte Faragher smiles for the camera. She has long dark hair, a white top with blue stripes

Loneliness – A Semi-Paranoid Perspective

By Disability, Undressing Disability

This guest article is written by Charlotte Faragher, a disability rights writer from Oldham. Charlotte, who has had quadriplegic cerebral palsy since birth, has published many articles about disabled dating and intimate relationships.

Loneliness is something that will affect us all at some point in our lives. It is sadly true that irrespective of personal circumstance many of us will have had to tackle this issue with unflinching realism, thanks to Covid 19 and everything that has brought. Yet, I believe there are a particular set of negative voices and presumptions to battle daily if you are a disabled young person in today’s society, as I am.

Charlotte wears a red top, has long dark brown hair and a big smile

One of these facets is having to accept what my future may look like, especially as my parents are currently my main care givers. In the years ahead, without a partner or close friend to take over that role, it is most likely I would have to be placed under the permanent care of the local authority. This personally fills me with deep shame, and I have no doubt it would have a severe negative impact on my physical and mental state, thus exacerbating my feelings of loneliness.

I think in this way because it gives the impression that my disability and all its complex components are just too multifaceted and tiring for someone to handle permanently. Additionally, if I were placed in a care home or supported living at a relatively young age, I would have extra time to stew over the lack of significant life experiences I’ve had. Life experiences that would be hampered further by the reduced freedom to do as I please, when I want.

Although I understand that I can greatly reduce the stress felt by my loved ones by being a positive, thankful light in their lives, it does not mean that the enormity of caring for me will magically reduce as a result.

Romantic Relationships

Furthermore, if I were in a romantic relationship there would inevitably be times when a partner would want to lean on me for support. I worry I would not be able to help them through as effectively as I would like. This could lead to us both feeling more isolated and lonelier.

Friendships

When it comes to friendships, I often struggle to make friends or feel genuinely comfortable in a friendship group for two reasons.

1. I worry that the people I want to befriend won’t fully understand or respect the reality of my disability. I am almost fully competent, educationally and emotionally, yet struggle to do many physical activities that others may take for granted. I also think that people will see me as less intelligent and socially aware simply because of my differences.

2. I feel that when going out with friends, they have to put up with extra inconveniences such as things taking longer due to my care needs, or choice of venues being limited due to poor access.

Paranoid Thinking?

I often wonder if my friends enjoy the experiences less, simply because I am there. Are their assurances that they are unbothered by these changes to their normal night out genuine? Is it better to be lonely than experience friendship induced paranoia?

To summarise, I am aware that one way to reduce my paranoia and feelings of loneliness is to try to remember that I am an awesome, valuable person who has just as much right to a rich and beautiful life as anyone else.

Indeed, friendships are a key element to humans not just surviving but thriving. I also could get out and socialize more and stop assuming that everyone has negative and apprehensive feelings towards me and my disability. It could, in fact, enhance our relationships.

If people were more open and outwardly accepting of others with differences, it would allow me to feel more loved and valued in the body I have, just as I am. So let’s work together!

Follow Our Loneliness Campaign

This article by Charlotte Faragher is part of Enhance The UK’s disability and loneliness camaign. For tips on overcoming loneliness and for more insightful articles search the hashtag #DisabilityAndLoneliness and follow our campaign. We’re @ETUKUndressing on twitter and on Instagram @UndressingDisability.

More from Charlotte

If you enjoyed this article by Charlotte you can read more from her in this article about romantic relationships. You can also connect with her on Facebook and Twitter.

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