Skip to main content
Category

Disability

Disability and dating: Two red heart shaped balloons floating in the air

The Dating Campaign: disability and accessible apps

By Disability, Sex & disability, Undressing Disability

We asked….and you delivered!

Earlier this year, we asked disabled people to tell us their stories of dating. In particular, around using dating apps as a disabled person. We received so many stories ranging from positive to negative, highlighting everything from app design to education needed, and how to disclose. 

 

Here are some of the stories we collected during the campaign:

Jo

“I’m going to tell you about a dating experience that I’ve had as someone who is visually impaired. I’ve had a few interesting experiences but a positive one that comes to mind was when I went on a date with a guy to the cinema. 

“At first, he was scared to ask if I wanted to go to the cinema because he didn’t understand why I would want to go to the cinema if I couldn’t see! But I like going to the cinema. He ended up being quite a cheap date because we had to pay for one ticket as we got a carer ticket for free.”

“I would say a lot of my dating stories have been quite similar. As a visually impaired woman, when I tell men that I have a disability their initial reaction is alright, that’s okay or if you need to hold my arm that’s fine. They don’t care so it’s been quite positive.”

John

“I decided early on to disclose my walking impairment on my profile to demonstrate honesty. However, I presented it playfully by saying, “I will still carry the drinks from the bar!” 

I avoided saying the actual medical condition as I did not want my potential match to jump down a Google rabbit hole and make assumptions.”

“When I did not disclose my disability I found when I did, I would be ghosted – which was not fun. I have received strange opening lines and two that will stick with me are “Do your lunges work properly?” and “I bet your disability increases attention.”  

“There is a lot of education and normalising of disability that’s required in this space.”

“One of the most important things to remember when dating with a disability is that dating is a numbers game. The more people you meet, the more likely you are to find someone who is right for you. Don’t be discouraged if you don’t find your soulmate right away. It takes time and effort to find the right person. 

If you keep putting yourself out there, you’re sure to find someone who loves and accepts you for who you are. I know these are words that have been overused but the right person will be able to accept the disability and the person.”

Shreya

“I recently started casually dating again or at least I’m trying to. I did this before I was disabled but not since. I was prepared for some ableism but I wasn’t prepared for the amount of it.”

“I’ve had a lot of the classics: men telling me I’m sexy despite using a wheelchair, or people asking why I use crutches. I don’t use crutches as I use a walking stick. I’ve had people ask me about my medical history within the first five minutes of chatting.”

“I’ve had questions about whether I can have sex even though I am on a sex-orientated dating app. One time someone found out I was a wheelchair user and he made a joke. He said, if we met up and I didn’t know about you being a wheelchair user then I would have made a joke about you being a catfish.”

“From then on, I decided to have one picture with me in my wheelchair and one with my walking stick. I’ve had fewer matches but more intrusive questions. You just can’t win, why is it so hard?”

Dating and disability: A person using apps on a phone in one hand

Carrie

“As a neurodivergent person, I often find the apps a bit overwhelming in terms of their layout as it’s unclear what to press or how to tell someone you like them. I’ve sent way more superlikes than I intended as a result of this.”

“It’s hard to know when to tell someone I am neurodivergent as my disability is hidden. On most apps, there isn’t  an option or a space to do this. I tried joining a dating app for disabled people which listed autism but no other neurodivergent condition. I gave up.”

“I did join a dating site for autistic people which had a wonderful option to list your stims. First date nerves are the worst so I like that you can go in knowing that someone knows what your soothing sounds or behaviours are ahead of time. I also loved that you can connect using your common interests too.”

Alex

“This is a little story about one of my recent dating experiences. The person I went on a date with has a brother with a disability. It was easy to connect with them and focus on the date rather than anything else.”

“These topics do come up and sometimes you have to define your disability and walk someone through what you go through daily. Certain things might come up during the chat that make it a bit awkward or a bit draining for us as people with disabilities to talk about.”

“With this person, in particular, we had a lovely conversation which was very entertaining. We had some ice cream and walked around London. It was very cute.”

B

“I openly share that I am a wheelchair user on my dating app profile, usually with a joke, to prevent people from seeing it as a tragedy, but this isn’t always enough. One day, I received a note from a person that said “Everything happens for a reason, right?”. I immediately understood that they were referring to my disability. I accepted their message request and told them I didn’t understand why they would say that and that everything in life seemed very random to me.”

“They replied with a very long message. In summary, they just wanted to say one or two words because I had shared a “special” condition. They kept arguing that life works based on cause-and-effect relationships, that people always use this as an explanation for the things that happen to them, and that if they can be honest with themselves, they can have the right perspective on life.”

“They said that they were thankful that I was hopeful despite everything and assured me that I brought light to their day. Finally, they wished me lots of luck and said goodbye. They seemed very confused about how to see disabled people but I had a chance to explain what was wrong with their approach. In this instance, they reacted with extreme guilt, apologising over and over again. The problem was not my disability but their self-centeredness; and isn’t this always the case?”

 

WE WANT YOU

Were encouraging anyone with a story to comment, DM, tweet, or post using the hashtag #AppcessibleDating. We want all stories – positive or negative or both!

Well then take the feedback weve received to the dating apps themselves with a list of proposed changes and ways they can better support disabled people with their dating lives. 

 

Follow the Campaign

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

Want to read more? Visit our blog on online dating as a disabled person

Dating campaign: two hands held together in the shape of a heart

The dating campaign: #appcessible dating for all

By Disability, Sex & disability, Undressing Disability

This Valentine’s Day, we’re launching our #AppcessibleDating Campaign. 

 

Let’s face it, dating can be difficult especially if you are disabled. While there are a lot of apps on the market, how many of them are really designed with accessibility at heart? 

From better accessibility features to better resources for  challenging stigma – we want the apps to give disabled people the best possible experience and chance at finding love. 

Why APPcessible love and dating?

There are many reasons that disabled people find dating apps difficult. Some of these could be how to navigate the actual app itself, overload of information, disclosing a disability, understanding social cues or reading the information. Not to mention the reactions from matches.

“I have received strange opening lines. Two that will stick with me for a long time are, “do your lungs work properly?” and “I bet your disability increases attention.” There is a lot of education and normalising of disability that’s required in this space”

What do we want from our dating campaign?

We asked our audience to get in touch with their stories about their experiences of dating with a disability. We were blown away by those who reached out but it became clear there were several common themes throughout the accounts.

“The apps need to realise that they aren’t great for those of us who are neurodiverse. I would love to see a simpler, quieter design and layout. I find opening an app  with too much information overwhelming and just want to shut it down.”

Lots of you said that the apps need to normalise disability and make it easier to be more visible on the apps. There needs to be more education and information available. 

We reached out to a few of the more popular apps in the hopes of opening a discussion on how they could adapt to be more accessible. Not one answered us. We hope to change this moving forward  as we will share our research, stories, videos, app audits and resources. 

“I went on a date with a guy to the cinema and at first he was scared to ask me if I wanted to go because obviously, he thought, she can’t see, why would she want to go to the cinema? 

“When I tell men that I have a disability, their initial reaction is alright, that’s fine or if youneed to hold my arm that’s fine, they don’t care. So yeah, it’s been quite positive.”

 

We want you

We’re encouraging anyone with a story to comment, DM, tweet, or post using the hashtag #AppcessibleDating. We want all stories – positive or negative or both!

We’ll then take the feedback we’ve received to the dating apps themselves with a list of proposed changes and ways they can better support disabled people with their dating lives. 


Follow the dating campaign

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

 

Read more about loneliness and disability by visiting our blog

Cervical cancer testing: A ball of pink and purple cells

Researchers aim to improve access to cervical cancer screening for physically disabled people

By Disability, Sex & disability, Undressing Disability

Researchers aim to improve access to cervical cancer screening for physically disabled people

 

A team of researchers at Keele University that includes psychologists, GPs and nurses, are leading an innovative new study which aims to help physically disabled women better access smear tests. It is hoped that this will reduce cervical cancer rates.

The testing, which is also known as a smear test, can be really difficult for many people. It can be physically challenging for many people with a cervix and sometimes impossible. Not only that but misconceptions about disabled people can make access even harder.

Cervical cancer testing rates

There are more than 7 million disabled people in the UK who may be likely to have a higher risk of delayed diagnosis and dying from cancer due to lower screening uptake.

Removing these barriers could help ensure equal access to cervical cancer prevention. It could also mean early detection of cervical cell changes therefore reducing the number of deaths from cancer.

The study has been funded by the National Institute for Health and Care Research (NIHR). It is being conducted in collaboration with Jo’s Cervical Cancer Trust and patient representatives. The study will involve interviews and surveys with people who have physical disabilities or conditions that make cervical screenings challenging. The team will also interview GPs, nurses and reception staff to gain an understanding of the barriers posed by the process which will help to highlight solutions.

We are very grateful to have received funding for such an important and largely overlooked issue and we look forward to working with stakeholders to improve the cervical screening experience for physically disabled women and people with a cervix, said Lead researcher Dr Sue Sherman, from Keele Universitys School of Psychology.

Everyone who is eligible for cervical screening should be able to access the test. Too often we hear from women who are unable to attend as a result of a disability or long-term condition, and this should not be the case. Were thrilled to be teaming up with Keele University to help identify and address some of the barriers and stigmas that exist and ensure more women can reduce their risk of cervical cancer,” added Samantha Dixon, Chief Executive of Jos Cervical Cancer Trust.

Cervical cancer is caused by a virus called human papillomavirus (HPV) that causes changes to cells in the cervix. If this is left untreated, the HPV infection may turn into cervical cancer. Smear tests can help to determine treatment before cells turn cancerous if HPV is detected.

How to get involved with the cervical cancer study

Do you have a physical disability/ impairment or long-term physical condition? Does this mean that cervical screening is hard or impossible for you to take part in?

Would you like to join our project group? What does this involve?

  • This is a virtual study and will involve you attending a few online meetings throughout the project:
  • You will be reimbursed for your time.
  • The project is expected to last 2.5 years

If you are interested take in the road, please complete the following form/ scan QR code:

https://forms.office.com/e/bVJAmWveyb

Or

For further information an expression of interest, please e-mail doctor Emma Kemp (e.j.kemp@keele.ac.uk)

 

Read more on cervical cancer and Deaf awareness

Disability and loneliness: a hand holding one cup of coffee

Christmas and loneliness: how you can help someone feel less alone

By Disability, Sex & disability, Undressing Disability

Christmas can be a wonderful time of year but it can also be a really lonely one. Many disabled and neurodivergent people are more likely to struggle with loneliness – especially at a time of year that is renowned for family, friends, parties and social events. A lack of an emotional connection or people around at this time of year can make people feel depressed or anxious.

We conducted a survey in November 2021 which revealed that 47% of disabled people felt lonely frequently with 12% feeling lonely all the time. We need to recognise when people might be struggling or recognise the signs in ourselves.

Access our survey results by clicking here

It can be difficult to reach out to ask for help and our survey discovered just 20% had spoken to a professional about the impact their loneliness was having on them. However, 48% had reached out to family or friends to talk which is more positive.

In the survey, we asked people what they thought might help with 45% of disabled people reporting a hug or personal contact would be great. A further 38% suggested one-to-one time with friends also helped. Some thought that connecting with others in the disability community may help.

How can I help?

Reach out

We’ve all been there when things get busy at Christmas – not having enough mental or physical space to go for a coffee or drink with someone. It’s hard to stay in touch with people, especially during the festive season. If you haven’t seen someone in a while – why not text or call them?

Be there
Asking how someone is and taking the time to really listen is appreciated. Putting your phone down and asking questions means someone is more likely to open up. Don’t put pressure on someone to tell you what they are feeling if they can’t or don’t want to. Alternatively, make it clear that you are there for them if they want to talk or gently let them know you have concerns.

Set up an anti- loneliness Christmas event
Setting up group activities either online or offline can also help people to feel included. It might be fun to organise an online pub quiz or watch a film with someone as a way of staying connected. If someone is struggling, they may appreciate an activity which can get their mind off things.

Talk to other mates
Telling another friend of your concerns can be very helpful. A team approach to making sure someone isn’t feeling down or alone means there is less stress on one person.

Care for carers
It can be really hard to look after someone who isn’t well. The end of the year can be exhausting for everyone especially if you are providing care for a loved one or family member who isn’t well. Taking the time to reach out, ask how they are, take them for a coffee or offer to listen if they need it. Could you organise something fun for them or bring them a present to cheer them up?

Offer to decorate
Many disabled or chronically ill people may not feel well enough to decorate their homes. Can you offer to pop over and help them put up some decorations or take them down when they need to?

Invite someone for Christmas
Are you in a position to have someone over for Christmas? People can be on their own for multiple of reasons and may not feel comfortable asking to join your family for the day. If you suspect someone might be on their own – why not offer a seat at the table for dinner or offer to pop over afterwards?

If there are a group of you that are without a place to go for Christmas – why not organise a day together? You can split the responsibilities and the cost between you and it means that no one is on their own. It can also mean you discover a new Christmas tradition!

Click here to read more about loneliness and disability 

New Year’s Eve and loneliness

New Year’s Eve is another time when people may struggle as they don’t have family or friends around. Some may not feel up to going to crowded bars or may worry that pub or club is not accessible. Could you potentially hold a drinks evening or film night that evening at your house instead? Or offer to go to theirs armed with a cheeky prosecco and party poppers?

Check if a pub/nightclub is accessible
New Year is one of the biggest nights out of the year but it can be difficult to navigate for disabled people. If you are organising drinks or a night out, check ahead of time that the pub or club that you choose is accessible for people.

Not sure how to choose somewhere to go? Ask don’t assume someone’s access requirements and that will help you narrow down a few spots. It could be that someone needs a quieter pub because they are neurodivergent and may struggle with crowds or if someone is a wheelchair user then they may need step-free access.

Download our free resource on how to choose an accessible venue

If you are struggling with loneliness or just need a chat: here are some helplines or websites that may help you

Contact
Mind –  0300 123 3393 / info@mind.org.uk
Samaritans – 116 123 / jo@samaritans.org
Calm – 0800 58 58 58 /
Childline (under 19) – 0800 1111

Websites
Age UK
Marmalade Trust
WaveLength
Samaritans 

Love Lounge

All five of the incredible Quest sex toys from the new range

Introducing Quest: our new line of inclusive sex toys

By Disability, Sex & disability, Undressing Disability

We are beyond thrilled to introduce you to the Quest line of sex toys developed with our partners, Rocks Off. We’ve taken our time to get everything perfect and you know what they say….. good things come to those who wait.

We all have to start somewhere: workshops and focus groups

What a journey! Going on a Quest is always better in a group so with that in mind, we consulted with colleagues, friends, family and disability communities to find out what you really wanted.

We held ideation workshops, focus groups and meetings focused on discovering what people really need from their sex toys.

We realised that buying a toy is a journey which starts from the moment you think about potentially purchasing a new product. As a team we truly considered the experience for those with physical, sensory or cognitive impairments.

This meant examining how easily the toys could be bought, the packaging opened, the toy charged and the instructions understood. Of course, we also considered product use and enjoyment for those living independently and within support environments.

Shop the new range by clicking here

The Quest launch party in London

Features

When it came time for design, our focus groups and workshops had clear ideas of what we needed to include.

We’ve put this into practice by adding: remote controls for solo or couple play, Silicone straps, large tactile buttons, magnetic snap charging, visual and harpic feedback as settings change, easy operation, contrasting colours, Braille and QR codes for audio descriptions of product and pull tab packaging

But that’s not all.

We want to hear from you about the design. You can leave us reviews or let us know what you think.

the quest range pink wrist strap remote control

Features in focus:

Here are three of our favourite features in more focus.

Remotes and wrist straps

The design of the wrist strap and remote is ideal for anyone who may have mobility issues or different grip strengths. It allows you to take control, or your partner, for up to ten meters away for hands-free fun.

Bigger Buttons

Who has time for tricky buttons or small switches?

We’ve created large, raised buttons which are easy to access and ideal for users with visual impairments. It’s also great for neurodivergent people who may prefer to focus on sensations, not instruction manuals.

Sensory feedback

We’ve added LED lights and vibrations that can let you know when the product is turned on or off and charging. So you won’t be left in the dark about what your product is doing.

A Quest for accessible packaging

Packaging can be really tricky especially when you just want to get to your new favourite toy as quickly as possible.

We’ve designed the Quest boxes to allow access for those with visual impairments to neurodiversity to those with less dexterity. The boxes have a simple pull tab that can be used with a finger or mouth which allows the contents to glide out of the box.

The colour palette has been carefully selected along with font size and placement. There are also braille QR codes that load audio product descriptions.

Other features include:

  • Remote controls with silicone straps
  • Large tactile buttons
  • Magnetic snap charging
  • Both visual and haptic feedback as settings change
  • Easy operation and use

Want to learn more about the Quest line of toys then click here

Body safe materials

It’s important to make sure that when you are shopping for new toys, you stay safe. With this in mind, our partner, Rocks Off carries out rigorous lab testing which ensures the toys are produced in a sterile, clean environment.

When it comes to materials, we use ABS plastic which is non-porous, and durable along with medical-grade silicone which is non-allergenic. All toys use premium metals with no nasty nickels or cheap alloys.

Would you like to learn more about Rocks Off body safe material? You can click here to visit the Rocks Off page

Sustainability

Rocks Off has also thought about how to make the products as sustainable as possible. The packaging is recyclable, and biodegradable and has been certified as sustainable by the Forest Stewardship Council.

Each product is packaged in cardboard covered in a biodegradable coating, all sourced from FSC-certified suppliers.

When it comes to the toys themselves, we used ABS plastic which can be recycled along with medical-grade silicone.

 

Interested in reading more about body safe sex toys and how to find them? You can read our detailed blog on what to look for and what to avoid!

Two women sitting in bed kiss while being lit up by fairly lights to highlight how ADHD may affect your sex life.

ADHD Awareness Month: can ADHD affect your sex life?

By Disability, Undressing Disability

October marks the start of ADHD (Attention Deficit Hyperactive Disorder) Awareness Month but what does that actually mean for those of us who are diagnosed with it?

When it comes to ADHD, I can’t tell you the number of ways it affects me from my workplace to my travel to, unfortunately, my relationships. There is so little out there for adults with ADHD in terms of research, especially for those of us who are queer, transgender or non-binary. When it comes to sex, the information can leave a lot to be desired.

However embracing our sexuality, and our ADHD, is important. While ADHD can make things like choosing the right toy or reaching orgasm more difficult, it’s not impossible. Communication and education can go a long way.

Here are three of the biggest things I wish I had known about sex, my brain and ADHD.

1 – Focus

One of the biggest stereotypes about ADHD is that we can’t focus. In reality, it’s not quite that simple as ADHD-ers struggle with regulating focus- either too much or too little. We cannot get our brain to focus if we don’t want to or break focus if we are locked into something we find interesting.

In the bedroom, that lack of focus can be a libido killer in that it can make it hard for us to stay in the mood, maintain an erection or achieve orgasm. The results of that can be a frustrating experience for everyone involved.

The opposite is true sometimes in that we can be so focused on everything around us that we find it hard to make time for sex. Coupled with a lower sex drive, I find that I can get so lost in my work that I fail to notice the hours slip past before it’s too late and a partner is already asleep.

Read more: As a neurodivergent person, how do I recognise abuse in my relationship?

2- Overwhelming

When it comes to sex toys, I never really got the hype but I also never considered this may not be my fault. So few are designed with neurodiversity in mind that they often arrive with overly complicated instructions, flashing buttons and LED-what-the-hells!??! By the time I have navigated the box, I have little spare mental energy to engage with pairing it to my phone.

Overwhelm can lead to a lot of not-sexy emotions including frustration, anger and sadness. Many ADHD people will experience shutdowns or meltdowns which are exhausting and can cause someone to completely withdraw.

It’s not just about toys though as some lubricants or massage lotions can be too much for neurodivergent people. The smell or texture can be too overpowering or feel uncomfortable on the skin. If that happens, it can make people feel awkward, anxious, nauseated or panicked. It may also ruin the mood by being the only thing they can notice in the room.

3 – Risk

When we make a decision to have sex we calculate a risk. We make a decision to wear a condom, use lubricants that are safe with our toys or bodies or we choose our partners carefully based on a number of factors. Those of us with ADHD struggle with decision-making as we can be impulsive and look for the potential reward that comes with taking a risk.

The bad thing is that there isn’t always a reward. A study in 2017 revealed that teenage girls with ADHD are three times more likely to get pregnant accidentally while ADHD boys are twice as likely to get someone pregnant.

Another study on medicated and unmedicated ADHD patients revealed those without medication were three times as likely to contract a sexually transmitted infection. Interestingly, the same study showed that medication cut this risk by 40%.

Interested in ADHD? Here are more stories you might like to read:

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!

 

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.

A graphic of a man showering with a thought bubble that say SEX, behind him are two carers

Disability, Sexual Expression and the Privilege of Privacy

By Disability, Undressing Disability

Let’s take a look at the realities many disabled people face around sexual expression and intimate relationships.

This article is written by Zoe Lloyd, a counsellor and disabled woman who has live-in PA’s. It is intended to provide insight for:

  • care home workers
  • carers and personal assistants
  • occupational therapists and physiotherapists
  • those working and supporting disabled people to enjoy every aspect of a fulfilling adult life.

Question

To give an insight, let’s start with a few questions to help set the scene.

  •  What do you do to prepare for a date or a naughty weekend away?
  •  Do you need help with intimate personal grooming such as hair removal or applying body lotion to make you feel and look your best?
  • Who do you tell when you’re planning to have sex?
  • Who helps you to open the packaging on your new sexy lingerie or sex toy?

Privacy

We’re guessing many of you get ready for a hot date in private and don’t have to tell anyone else what you’re up to. Some of us will not have that freedom of privacy and will rely on a carer/PA to help us get ready for some intimate fun.
This could be requiring help to shave ‘down there’ or packing sexy underwear and sex toys into a case…. someone knows what your plans are!
Many disabled people live their lives in this way, without the privilege of privacy.

a graphic of a male showering with two carers in the background and thought bubble that reads SEX coming from his head

Embarrassment and Anxiety

All of these scenarios where someone is left feeling quite exposed by their lack of privacy, can lead to a constant underlying hum of embarrassment and anxiety.

No matter how much you may laugh it off or pretend you’re confident, having no privacy affects you.

Other people don’t need to have someone involved in these processes unless they choose to share. That’s the key – our lack of choice. If we need to pack a case for a sexy weekend, and can’t physically do it ourselves, then someone else will always know what you’re taking and what you’re planning. Therefore, we either deal with that, or we would have to deny the sexual part of ourselves forever. All just to save some embarrassment. Disabled sexuality should not be a taboo topic, whether that be in residential care homes, in PA/client relationships, or wider society.

Disclosure to a PA/Carer

Another point to consider is which carer/PA would you feel comfortable involving in this intimate side of your life? Disabled people can have several carers all of whom come with their own personal set of beliefs and embarrassment levels which can cause more barriers.

Imagine planning your sex life around the days a specific carer –the most approachable one– is working? This is a perfect example of the lack of spontaneity many disabled people face. It’s great when you’ve created a relationship with your carer where you feel happy to disclose these details. However many people don’t get that luxury.

Plus there’s having the confidence in yourself to ‘own’ your sexuality and not be concerned about someone else knowing your private life. Finding this secure place within yourself can be a lengthy process. Yes, you’ll see Instagram influencers who appear very comfortable with their sexuality, naturally that’s why they’re in the public eye! They provide a voice for those without the confidence. Unfortunately many people feel trapped,  still too ashamed to share their sexual desires with their carer. Resulting in their carer not knowing how to help facilitate access to their wishes.

Starting the Conversation

How can carers and care giving professionals improve this situation?

  1. Tell your client know you are open to having this kind of conversation. Take the awkwardness away before it gets to that point. For example you could say, ‘I’m here to support you in whatever way I can. I’m happy to talk or help you with anything – even if it’s sex stuff! I know it can be embarrassing, so I’m letting you know you don’t have to feel embarrassed with me’.
  2. If it feels appropriate, share a story of your own, so they don’t feel there’s such an imbalance of having privacy exposed.
  3. Depending on your work environment, have literature or symbols (say Pride colours for example) visible. This way the client knows that the PA/Carer or organisation is a safe setting of acceptance. These items can be used as a prompt for a conversation starter.
  4. Judging each situation differently. You may be able to suggest, in a light-hearted manner, ‘oh are you going to take some sexy underwear?’, or ‘bet you’re going to get all spruced up – want me to help?’ This breaks the barrier for them and the client can then say yes or no more easily.

 

Sexual Expression Training

Enhance The UK runs two fantastic training courses on sexual expression, the first of their kind in the UK. The courses are designed to support residential care home workers and those working in the field to better understand disability sexuality and an individual’s right to sexual expression. Learn more via the links below or get in touch to enquire about available dates.

Disability and Sexual Expression Training

Sexuality, Sexual Expression and Relationships Training for Care Providers

 

 

The words 'Breaking News' written in a tv news format against a yellow background

News: Enhance The UK launch Ground Breaking Disability And Sexual Expression Training

By Disability, Undressing Disability

In what is believed to be a first for the UK, disability awareness charity Enhance The UK has developed a new training programme on the topic of Disability and Sexual Expression.

Aimed at professionals working in caregiving roles such as occupational therapists, care home staff and physiotherapists the course tackles the subject of disability and sexual expression.

Jennie Williams, CEO of Enhance The UK (ETUK) said “Our training programme is for occupational therapists, physios, sex educators, teachers and anyone who works with disabled people. It is designed to build confidence and develop communication skills so that the current barriers around sex and disability can be removed and open conversations about sexual expression can take place with a person in their care.”

Jennie wears a patterned swirly dress, has long blonde hair and dark framed glasses with pink lipstick
ETUK highlight that the training is necessary because sex and disability is still a taboo subject, and even in a medical environment there are barriers due to a professional’s personal level of embarrassment or awkwardness around the topic.

The following scenario puts this in context. A man in his 30s has been in a traffic accident and has acquired a spinal cord injury. His life has changed dramatically and whilst he’s receiving support for his physical and mental health, he’s unsure who to ask about his sex life. A lack of intimacy is causing issues in his marriage and impacting his self esteem.

CEO Jennie Williams explains “Everyone has a right to sexual expression and it’s wrong to assume that disabled people aren’t sexual beings with the same need for intimacy, exploration and expression. Yet in a professional capacity it can be a tricky subject to approach when your employer has no policy in place, or you feel uncomfortable or embarrassed chatting about sexual wellbeing with a patient. Our training course will build confidence and develop communication skills thus enabling open conversations which support the needs of both patients and caregivers. ”

Jennie adds “We have delivered this unique training course to an NHS Trust and to care home staff and the feedback is extremely positive. It’s obvious there is a need for this course for professionals. Our goal as a charity is to change the way society views disability and to raise standards in sexual health and sexual awareness for disabled people. We are delighted to be able to support both professionals and the disabled community with our work.”

Learn more about our Disability and Sexual Expression training by contacting us directly. You can also watch this video and learn the details of the 3.5hours course.

 

Top