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Jun 28
Point of view of somone lying down, looking at their blue jeans. There is a woman in underwear behind mesh curtains

Helping patients who want to experience sexual contact

By The Love Lounge

The Question

Dear Love Lounge,

I have a middle aged male client who I support at home with care. He has progressive MS and is interested in having sexual contact with someone.
I would like advice as to how I can go about helping him. I have done a bit of research into sex workers and it seems like this would be an option? How do I go about getting a sex worker that will assist him with his access needs etc.
Any assistance will be greatly appreciated.
Kindly
S

The Answer

Thank you for reaching out to us, and it’s great to see that you are open to helping your client in this way. He must really appreciate that.

We have considered your question and will advise you of the legalities as well as making sure both you and your client are happy with the process.

It sounds as though you have an open, trusting relationship for him to have made his wishes known to you, and for you to source a way of facilitating this for him.  As well as the booking of someone, there’s the discussions to be had about your part in it.  Would he like you to stay in the house for safety, or go out for a while? Will you be there when the person comes in, will you help undress him etc, or would he rather the sex worker do this? Make your plan together clear, so that you don’t cross any boundaries or make each other feel awkward in the situation.  Say what you both are comfortable with re how involved you will be.

Now with regard to the legalities, the situation is as follows;

The service user must place the booking themselves and make all arrangements.  If the service user is not able to do this (by virtue of their disability) then it is permitted for a staff member to place the booking and make the arrangements for a service user, if the service user is over the age of consent and has ‘capacity’ to consent.

It is best if the client pays over any money to the sex worker themselves as the law still has a grey, and untested, area of ‘procurement’.  If, however, the service user needs physical support to hand over his or her money by a staff member, there should be no problem as long as it is clear that the money is the service user’s own, he or she has asked for this support and the service user is in full agreement with the mutually agreed price for services to be provided.

You may have already found a website offering these services, but one we can recommend is the TLC Trust as they work specifically with disabled people, so have the experience and tact of how to manage many different scenarios.  They may be on the pricey side, but this will be up to your client..

Hope this information helps and we wish you all the best!

Zoe

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.

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Next question
Jun 23
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

 

 

Jun 03

How to make your job interview neurodiverse-friendly

By Business

Apply here: How to make your application process more inclusive.

 

Job interviews and applications are never fun, but they can be extra hard for those with neurodiverse conditions. Neurodiversity can also include autism, Tourette’s syndrome, ADHD, dyslexia and dyscalculia.

Many job interview processes are not designed with neurodiverse people in mind. There are so many benefits to hiring people with neurodiversity including their creativity. However, businesses need to make sure that they are not putting these candidates off before they even start the interview process.

Flat lay of a persons head that says ADHD with straws coming out it like squigglesAs a person with ADHD, I have stopped mid-application and quit because I can tell by the form I’m reading that it’s not worth my time. Things like timed tasks and math tests may sound like a good way to test candidates but what they tell me is that you are going to be a nightmare to work for as a neurodiverse person.

If you don’t facilitate people who think differently at this stage, why should I have confidence you will later on?

 

Here are seven ways to make your job posting and process neurodiverse friendly:

 

 1 – Simplify your questions

It can be tempting to ask a series of questions in one go to save time when interviewing. However, this can be confusing for neurodiverse people to work out where the emphasis is.

An example – how long did you work at your last job and can you describe the role while outlining your successes there? I have no idea what part is the most important bit for me to answer. I’m also likely to be nervous causing me to forget what I’m trying to say.

Slow the questions down, keep them brief and ask each one individually so I stand a chance.

 

2 – Simplify the job advertisement

Confession time: I don’t read advertisements the entire way through. The simple reason is that my ADHD skim reads and won’t let me focus on reading all of it. I cherry-pick what I need to know which is often what the salary is and where the job is.

Longer job applications lose the majority of readers who get bored and give up but in particular those with ADHD. I cannot force myself to read through it even if I wanted to.

Keep it short and simple by listing what I need to know (salary, main responsibilities, location) but get rid of the fluff (who cares if you have a pizza Friday)

I can get the rest if I get the job.

Another issue here is self-esteem. A lot of neurodiverse folk, myself included, have low self-esteem stemming from years of hearing negativity around our symptoms. For me this has lead to the ‘I can’t do that’ reactions to overly demanding job descriptions.

The higher you list a skill setlist that you potentially do not need then the more I assume I’m not on it.

 

3 – Remove the tests and assignments

I recently applied for a role as a children’s book editor which was a departure from journalism. I thought it would be a nice change but still grounded in my experience. The role was entry-level so it reflected that. However, what I got back after I submitted my CV was a list of 5 tasks that I needed to complete to set deadlines, including one that was over 1000 words.

While I did the assignments, I had to let paid assignments go to accommodate, I was tired as I did it during my lunch breaks and at night after work. I didn’t even get an interview after all of that because it was rushed and not my best work. The panic and mental time I spent on this was incredibly draining.

Picture of the back of a ladies head sitting across the desk from a man and a woman in an interview situation

Another company that I worked for in the past asked me for a math test for a design job before I even submitted my CV. The irony of sitting beside my portfolio I had created for them while I exited the interview was not lost on me.

You will lose people before you even start the application process by asking us to complete tasks like this. Deadlines can be difficult for some neurodiverse people, especially those with ADHD.

My brain doesn’t process sequences quickly so while I can do the task, I can’t do it as quickly as someone who is neurotypical can. That creates a barrier automatically without me even having to make it to the interview. To be honest if I see a timed test in an application, I opt myself out immediately.

 

4 – Have an itinerary and stick to it

Going into a job interview and not knowing what is going to happen is another huge worry for neurodiverse people. While things happen and it may not be possible to stick to an itinerary, it can eliminate a lot of the panicking we go through in the run-up to a big interview.

We are already using a lot of our mental energy in ways that neurotypical folk aren’t in just preparing to go into a new environment. It helps to know as much as we can in advance. Including who we need to ask for, what room we need, the address of the office and also how long this is going to take.

Sending interview questions ahead of time can also help us to prepare ourselves. I am not great at answering on the spot even though I know the answers or have done the work. It creates a huge panic for me in which I will miss the key parts even though I know them. If you give me a chance to prepare for the interview then I can make sure that I have all of the answers you need ahead of time.

 

5 – Offer the option for an early interview

I always schedule things in the morning despite how I know I will feel on the actual day. My brain is better first thing when I haven’t had a whole day to sit panicking about what’s going to happen. If that is the case then I will overcompensate by being hours early or late.

Dopamine, according to studies, is released in large amounts in the morning when we wake up. ADHD brains are low in dopamine so we spend a lot of time trying to find sources to give ourselves that boost. So it makes sense that we function better in the morning because that’s when we have the highest amount of the low dopamine levels we have.

 

6 – Understand that disclosure can be terrifying

Forms that ask people to disclose their gender, sexuality or disability can be scary and confusing. I hate filling them in because ADHD is not classed as a disability so I technically don’t have to say that I have it. I am a gay non-binary person too so I panic when ticking boxes that this will go to an office where this will not be treated with discretion.

These forms are often attached to interview applications as a way to monitor diversity in the application process. Yet, for many of us, we don’t fit neatly into the boxes or we panic about the boxes we have to tick.

 

7 – Quieten the room down

Interviews may take place in rooms that are not designed to be ADHD-friendly. The sound of the clock, the rain outside, the person on the desk near me or even smells can be overwhelming.

No matter what I do to make myself concentrate, I will turn to look at things.

‘Seemingly distracted’ can also apply to direct eye contact which I also struggle with. I cannot hold eye contact easily especially when it comes to strangers.

In an interview being understanding of this goes a long way. Allowing fidget toys, taking notes, or not penalising me for ‘seeming distracted’ if I do break from concentrating. Taking the time to interview someone in a quiet room can also help them to feel a bit more relaxed and able to focus.

 

Read more about standard adjustments for interviews

Apr 22
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 

Mar 21

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.

 

Sexual Expression Training
Mar 04

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.

Feb 28
Sally wearing a black dress smiling to the camera

Sallie’s experience living with a rare disease

By Disability

“I was born with a disability called Holt-Oram Syndrome.  It affects the bones and muscles in my entire upper body and causes Congenital Heart Disease. Don’t worry if you haven’t heard of it, no-one has – even doctors.  It’s really rare.”

This is the explanation that has unintentionally defined my life since I was diagnosed with a rare genetic disorder at the age of seven. A rehearsed statement that has to be delivered repeatedly in the hope of gaining acknowledgement, understanding and assistance.  A disease is deemed ‘rare’ if it affects fewer than 1 in 2,000 people. Holt-Oram Syndrome affects 1 in 100,000. Worldwide, there are millions of individuals with equally rare and unusual conditions.

 

Diagnosis

Pre-diagnosis, we didn’t have a name for it. I just had a sore Little Hand, an achy Big Hand, bony shoulders and a huge scar down my chest.  Getting diagnosed wasn’t at the forefront of the doctors’ minds. They casually asked when I was a child if we’d like to know the name of this weirdo genetic fault.  My mum and dad were eager – naturally, and it was eventually christened ‘Holt-Oram Syndrome’.  Mum remembers feeling relieved – we had a name! But in terms of my care – nothing changed significantly due to the lack of research regarding Holt-Oram.  We weren’t given much information by the medical professionals, either before or after my diagnosis. As far as the consultants were concerned, as soon as my heart was ‘fixed’ (spoiler alert: it didn’t stay fixed for long) it wouldn’t cause any further problems. They assumed my skeletal abnormalities shouldn’t affect me too much (despite experiencing chronic pain in my upper body since childhood).  How far from the truth that doctor’s blasé statements proved to be!

In fairness, the doctors didn’t know.  Holt-Oram is so rare, they couldn’t Google it in the nineties.  Holt-Oram isn’t the only misunderstood and under-researched condition, there are roughly 6000 other rare diseases, affecting an estimated 300 million people worldwide.

Sally wearing a black dress smiling to the cameraIn the past, if a doctor hasn’t heard of Holt-Oram they have generally blamed me by insisting that the symptoms I’m describing are psychological.  Due to such little knowledge, a lot of the paediatric doctors I met refused to accept that their awareness was limited.  This caused a huge neglect in my care, and worsened my symptoms as they remained untreated.  As I’ve got older, awareness has improved and I finally have a great team of specialists – but it’s taken years of fighting to get this far.

Daily life

When someone asks me what’s wrong, or a more specific question: “why don’t you have any thumbs?”, “what are those scars?”, “why do you need an adapted car?” I feel sheer panic at having to explain Holt-Oram and how it affects me.  Most people actually lose interest precisely 0.9 seconds after asking.  I feel as if I’m on a very bizarre quiz show with a buzzer about to go off as I’m quickly stumbling over my words in order to provide you with the knowledge you require.

Trying to explain a rare condition to someone is a stressful challenge, but it’s even more difficult when requiring assistance. If I’m struggling to pack shopping into a bag, I’ll hear myself saying “I’m sorry, I’ve got really useless hands”.  If I desperately need a seat on the train I’ll be trying to explain and apologise, “my spine is really wonky and painful” because it’s easier than giving a full medical description. I find myself apologising a lot, even though it isn’t my fault that I have a rare condition. If people haven’t heard of the condition they’re less likely to take me seriously. It’s hard enough explaining it to medical professionals, let alone the general public.

There are countless other medical conditions that are well known, such as Arthritis or Cerebral Palsy. Those with widely understood and researched conditions don’t experience the same barriers as people with rare diseases.  Even if people don’t exactly know about these conditions they’re aware that they legitimately exist. When I require assistance, I often find it much easier to say “I have heart disease” as this is an illness that everyone is aware of and many are affected by. Something well-known is instantly acknowledged, and I never feel the same need to apologise when explaining a condition like this.

Rare disease day

On 28th February 2022 it is Rare Disease Day.  This is an annual opportunity to raise awareness of overlooked and under-researched rare conditions. With the hope of improving medical representation and access to treatment. Research and awareness for rare diseases and their charities is crucial.  These charities find it more difficult to raise funds due to reduced awareness. Therefore, this causes a lack of medical research.

It is incredibly overwhelming to be aware of every single condition that exists – there’s thousands that I’ve never heard of.  But, you don’t need to be a medical genius to acknowledge that there are millions of people worldwide living with rare diseases. These quirky and unique conditions, and the individuals they affect, deserve recognition!

 

Feb 25

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  

 

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.

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