What it’s like when your child is diagnosed with a rare disease

Today is Rare Disease Day. You might not think it, but up to 30 million people may be affected by one of over 6000 rare diseases. Carole Villiers’ 5 year-old son Dexter is one of them. Here, she shares the story of his Angelman Syndrome diagnosis and how it changed her family’s life. 

For 40 years, February never had any particular significance for me. No birthday, no special event. But on 10 February two years ago, my world turned upside down.

That day, I have an assignment in London.

When I leave the studio, I switch my phone on. There is a message. It’s an unknown number. It’s raining heavily. If I don’t run to the station, I’m going to miss my train. I race in the rain, listening to the message. It’s my son’s paediatrician. “I will call you back”. That’s all she says.

From that moment, my heart starts pounding. I dash across Victoria Station, catch my train last minute.

Suddenly, it’s quiet. I take a seat in a set of four, next to children chatting. I have a feeling that I need to be protected. I breathe.

I look at the time. It’s 2.48pm. I call the paediatrician. It’s immediate. “He has Angelman Syndrome.

The only thing I can say is “Oh my God”.

I have a silly thought: “Why are you saying that, is that all you can say, really, ‘Oh my God’?”

She asks me where I am. “On a train”. I can hear her guilt, the horror that this has fallen to her, to give me this news. I quickly wonder if she has been trained to do this, if there is a right way?

“Thanks for letting me know”. I hang up.

It will never be the same again

Dexer running himself a bath

Nothing’s changed on the train. But my life has stopped. It will never be the same again. Everything feels white, and diluted. I can feel contractions, almost childbirth contractions, in my stomach. I am giving birth to this new child, the one with a syndrome.

For five minutes, I’m the only one who knows. My child has Angelman Syndrome, AS, and it’s forever. My child won’t talk. What will happen to him when I’m not there? I breathe again. I’m ready to tell my husband. I call him. He picks up. I have to hurt him, I have to tell him this thing about his son. I tell him straight away. As softly as possible. I’m alone, on this train. He’s alone, somewhere in Brighton. Do I cry? I don’t think I do. I’m stunned. The train pulls in the next station, and I’m sitting on it, petrified.

Diagnosis is devastating, but I wonder if waiting to find out what’s wrong is not worse. Something is happening to you that you never thought would happen. You don’t know what it is that’s happening, you’re filled with fear.

It all begins to add up: the fascination with water, the enormous laugh, the flapping arms… every singularity of his behaviour matches the description of this rare genetic condition.

I can feel my heart sink to my shoes as I read about the delayed development, the language and speech impairment, the movement and balance problems, and the epileptic seizures.

I also read that only around 1 in 16,000 people have it. So it’s pretty rare.

“I hope you don’t feel guilty”

Then I find out that I am a carrier of the gene which causes the condition. It’s extremely hard to come to terms with this piece of news. It is much harder to share. The first thing people say is, ‘I hope you don’t feel guilty, it would be silly, it’s not your fault’. Well, I do feel guilty. How can you not?

Children with AS are very smiley. They have something angelic about them, so the name is fitting.

Every day I see my son create bonds with people on the street, I see their faces light up. Although his smile belies a troubled heart. It’s so easy to believe that everything’s okay for him.

When you read a description of AS on Wikipedia, it’s scary. You just want to run away, you don’t want to think about the future. I was very scared when I saw pictures online of older children with Angelman’s.

When I’m asked about the syndrome, I tell people to read about Colin Farrell (his son has AS). In his words, I find a helpful mixture of harsh realism and a way forward to transcending the pain of it all.

He says, “This is f**cking hard, but there is amazing beauty in it all.” And I know some people resent this – ‘stop saying that people with additional needs are inspiring’ – but it’s true. To see how hard my son’s working everyday to do simple things, like bringing a spoon to his mouth or walking without falling, casts a different light on my little problems.

Suddenly I could actually talk to someone who understood

Carole and her family sat on the sofa together
Carole and her family

Two years ago, I was sitting on that train, stunned by the life-changing news I had finally been given. Since then I found Face 2 Face, a free befriending service run by Scope, which connects parents who have disabled children. Suddenly I could actually talk to someone who understood. It’s so important to have someone who reaches out and brings you back from your worries, because you can so easily close, like an oyster, and withdraw. I almost did.

Now February has two significant days in my life: International Angelman Day and Rare Diseases Day.

I embrace them wholeheartedly.

It’s painful, because it’s a reminder that my son is different. But it’s also an occasion to celebrate him, and everyone out there who has a rare disease.

He who is called Dexter and has no obvious dexterity, also has a kind of dexterity that no one else has. He who cannot walk, can climb faster than me. He who cannot memorise words, can remind his dad to not forget his phone when he leaves. He, with his skin of eerie softness, his pure mind, and streaks in his hair which look like traces of god’s fingers, can embrace the two of us, and make us look at each other. In that, he’s meant to be here.

Today, I am celebrating everything that is rare and precious about him.

Would you like to talk to another parent who understands what you are going through and can offer emotional and practical support?

Face 2 Face schemes operate across the UK. Any parent of a disabled child may use their local scheme, even if their child hasn’t been diagnosed.

You can also chat to Ceri on our Rare Diseases community discussion. She’s a parent of a child with a rare condition, who manages the Rare Project – raising awareness of rare diseases through the arts. 

Leap for Scope with your extra day

As it’s a leap year, on Monday 29 February we’ll have an extra day in 2016. Why not do good and feel good and give that time back to Scope?

Take a look at the fun ways you can get involved.

Bake a difference

Hold a cake stall at your workplace, school or local club and donate the proceeds to Scope. If you email us your name and address we’ll even send you a cookie cutter!

Find out how your baking can make a difference.

Help out in one of our shops

A volunteer in a Scope shop

Volunteering can help boost your skills and confidence, improve your CV and is a great opportunity to socialise with other volunteers and our fantastic retail staff. We’ll give you all the support and training you need, and there will be plenty of cups of tea!

Find out more about volunteering in our shops.

A cyclist raising money for Scope

Take on a challenge with one of our events

Running, swimming, cycling or trekking, we have events for everyone. A great way to get in shape, meet new people and raise money for a rewarding charity. Our events are inclusive, fun and unforgettable.

Find your perfect challenge event.

Help to stock our shops

Time to think about your next spring clean? With that in mind, please think about taking your unwanted clothes, shoes, textiles and home ware to any local Scope shop . Every bag you donate raises about £20 to fund our vital work for disabled people and their families.

Find your nearest Scope shop.

Need more ideas? Visit the our website for other ways to get involved.

Come on supermarkets – please stock nappies for disabled kids

Laura is a mum on a mission. She’s noticed a big gap in the market, and is campaigning for supermarkets to start stocking nappies in larger sizes. Here she tells her story. 

“Nothing worth having comes easy.”

Laura and her son Brody smiling on a rollercoaster rideMy life (well, house) is full of quotes. So much so, my best friend jokes with me about it. Still, on the days I feel like I’m fighting a lost cause, this one drives me.

Around a month ago, I started a change.org petition asking leading UK supermarkets to consider manufacturing or selling larger sized nappies, for incontinent children with additional support needs.

There are thousands of children in the UK, older than “typical” children, who are not potty trained. Naturally, as a result they require bigger nappies. Are they easy to find? Of course not!

My son Brody

A close-up photo of Brody amilingBrody has Global Development Delay, epilepsy, hypotonia and hypermobility. In our special world, he is known to a large community as a SWAN – not yet diagnosed with a syndrome to explain his disabilities. Brody is a tall four-year-old. He wears the largest nappies available in supermarkets (– 6+),  but they are fast becoming too small for him. Frustration with this led to my campaign.

Whenever my campaign is posted somewhere on social media, I get people commenting with recurring suggestions: the continence service, pull ups and cloth nappies. Let me explain why, despite this service and these products, I strongly believe there is a huge gap in the market for bigger nappies in stores.

What’s currently available

Brody has recently been referred to the continence service and hopefully, after a waiting time (my friend has been waiting six months so far) we will receive a set amount of nappies per day. These will arrive in bulk. The continence service is great and very much needed for families like ours. However, the service itself is inconsistent, varying greatly depending on where you live in the UK. This becomes more apparent, the more I speak to others. For example, I’ve heard from families who have children with autism who aren’t entitled, families who are only allowed two nappies a day, and families who aren’t eligible for the service until their children are six to eight years old. One woman told me her child has severe chronic constipation, requiring medication and at least 10 nappies daily. But she’s not yet entitled to any help from the NHS.

Pull Ups, which come in slightly larger sizes, are designed for children in the process of potty training. Hence there are fewer nappies in a pack and the absorbency isn’t as good. They’re not adequate for a child who is doubly incontinent. Not only this, it would cost a small fortune for parents to buy Pull Ups, as one pack may last only a day or two.

Cloth nappies may suit some children with additional support needs, and there are some fantastic companies where parents can buy these online. However, this isn’t a best fit solution for every parent and child for many reasons (although, I’ve found a lot of cloth nappy fans will argue this point).

Life costs more when you’re disabled

The simple truth is thousands of parents require larger nappies because their children are either ineligible for the continence service, or require more nappies than they receive. As such, they are forced to buy online because they have no other choice. These nappies come with the classic ‘special needs’ price tag – overpriced! The sad reality is – life costs more when you’re disabled.

Online shopping can also be inconvenient because you have to wait for an order to be delivered. Not as simple as popping to your local supermarket when you’ve run out of a product.

Disabled consumers are a big market

Brody on a red plastic rockerIf you are in my shoes, you’ll be all too aware that people don’t think about these things unless it affects them. However, it really shouldn’t be this hard. The Extra Costs Commission report noted that there are over 12 million disabled people in the UK – that is almost 1 in 5 of the population – and our households’ expenditure, the so-called ‘purple pound’, totals £212 billion a year. That’s a lot of money. And high street businesses could take advantage of it.

I strongly agree with Scope that by sharing information about our needs and expectations as shoppers, and by being more demanding as consumers, companies will have the market data to serve us better. We need to shout loud and let our voices be heard!

We are a community, used to fighting battles. Please fight this one with me. Sign the petition and share it with your friends. Maybe together we can make a difference – one that would benefit many families.

My message to the supermarkets?

You have the opportunity to take the lead and cater to a huge consumer group – one that is often disregarded. Please listen. This is about supply, demand and inclusion. It’s simple – there is a demand for this product and you can provide it. Just take M&S as a wonderful example. Grandmother, Rita Kutt wrote to them and explained the need for larger sized clothes with popper buttons for disabled children. They listened! We are consumers – like everyone else – that should be heard.

What do you think? Could you benefit from being able to buy this product in a supermarket near you?

The Extra Costs Commission has called for disabled consumers to be ‘bold and loud’ just like Laura.

Welfare Reform and Work Bill: next steps after the Lords’ vote

Our last blog on the bill outlined the two priority areas for Scope – the proposed reduction in financial support to some disabled people and reporting on the Government’s progress in getting disabled people in to work.

The Bill has now reached ‘ping pong’ stage – it will be passed between the House of Lords and the House of Commons until an agreement can be reached.

The amendments

During their last debate in January, members of the House of Lords voted on a number of changes to the Bill, including:

  1. Preventing unemployed disabled people from losing essential support

The Bill proposes a reduction in financial support for new claimants in the Work Related Activity Group Employment of Support Allowance of around £30 per week.

This would impact nearly half a million people, risking households falling in to financial hardship and pushing disabled people further away from the jobs market.

The Government’s plans to reduce this support were defeated by 283 votes to 198 at the House of Lords. Now the Bill is being passed back to the Commons, it will fall to MPs to either uphold or reject this decision.

We think MPs should accept this amendment because we are worried about the impact a reduction in financial support could have. Disabled people are usually out of work for longer periods of time than people claiming jobseekers allowance. They are less likely to have savings and more likely to be in debt than non-disabled people, which makes adjusting to a reduction in income much more difficult.

Whether it’s paying for an internet connection to look for jobs, to transport to an interview, or appropriate work clothing, the process of finding work can come with substantial additional costs for disabled people. Reducing the amount of money available to meet these costs could move some disabled people further away from work.

People who are currently supported under the Work Related Activity Group should be protected from these changes, which are intended to only affect new claimants from April 2017. However, an unintended consequence of this could mean that some disabled people are put off starting work, because if they were to then fall out of work they would receive ESA at the new lower rate.

  1. Measuring progress towards halving the disability employment gap

In their 2015 election manifesto, the Government committed to halving the disability employment gap.

The employment rate for disabled people doesn’t follow economic cycles in the same way as the employment rate for the wider population. This means it’s crucial that we measure progress towards reducing the gap in employment between disabled and non-disabled people to ensure that disabled people have the same opportunities to get in to and progress in work as everyone else.

This priority was raised through another amendment to the Welfare Reform and Work Bill, which proposed to make annual reporting on progress on the gap a legal requirement for government.

Although this amendment wasn’t taken up, we were pleased to hear Lord Freud ‘formally commit’to including updates on progress in reducing the disability employment gap within a new annual report on progress towards full employment. His comments mark the firmest commitment from government in this area over the course of the bill so far.

We are now looking for more detail on what reporting will involve. It is essential that changes in the employment gap are measured against the same criteria on an annual basis. This will give a clear indication of where further work is needed to ensure the government makes real progress towards its goal.

We will be live tweeting the debate on Tuesday 23 February, and you can follow proceedings live online on Parliament TV. Watch out for more blog updates on the bill as it progresses through parliament.  

Alisha’s story: how technology has changed my life

Can you imagine the impact technology can have on a disabled student’s life? Technology can give disabled people independence that they could only otherwise dream of.

With your support, technology is opening up the world for young disabled people like Alisha. Alisha is 17 years old and attends Scope’s Craig y Parc School. In this blog she tells us how technology is helping her to realise her potential.

Support our work with young disabled people, as well as our other services, by donating today

If I’d been asked to write this blog two years ago, it would have taken about an hour and a half just to write a sentence.

I would probably still have done it because I want everyone to know the difference technology has made to my life. But it would have been so frustrating and so difficult.

“I can’t physically type as fast as I think”

I have cerebral palsy and I can’t physically type as fast as I think or anywhere near. But right now, that’s what I’m doing. I bet you’re wondering how!

I am using a piece of technology called Dragon Dictate. I speak, and the words appear on my screen and then I can print them out. It’s made a huge difference to me. It’s made me achieve things I only dreamed of.

I used to have a teacher – she’s passed away now – and one day she said to me. “You’re going to do your Maths GCSE.” I said, “No I’m not. Don’t be silly.” I didn’t think I could do anything like that. Studying was so difficult because I had to rely on someone to type everything into a computer for me.

But that’s changed now. I can do it myself with my voice.

Disabled girl using assistive technology
Alisha using Dragon Dictate

“It has opened up the world to me”

Kim, who is the Assistive Technologist at my school, introduced me to Dragon Dictate and it has opened up the world to me.

Kim showed me how to train it to understand my voice – it took a few hours. Now I use it in class and at home as well. It’s made me more independent and able to study on my own. So now I’m doing my Maths GCSE. I know my teacher would be so proud of me.

I never thought I’d be able to do one GCSE in my life, but I’m going to do two. And I feel like I want to push myself even further. Kim says technology can help me do that – it is opening up the world for young disabled people like me.

There are many different types of technology that can help a young disabled person become more independent. For example, if someone has very limited movement they can control a computer screen with Eye Gaze. That means – when they’re reading – they can move from page to page using the pupils of their eyes. They don’t need to press a button or anything.

Just one person – Kim – works with all 42 students here at my school and helps us use technology in different ways. She’s amazing. I don’t know what we’d do without her – we’d lose out on so many opportunities.

I’m guessing technology makes your life easier. Maybe it means you can keep in touch with your family – you can talk to and even see relatives who live far away. Well, Kim’s shown me that technology can do even more for young disabled people like me. It can help us make friends, communicate and control our environment (like turning the lights on and off). It can help us study, get qualifications and give us more opportunities to work. It can make us more confident and independent.

Alisha’s story shows that young disabled people’s lives can be changed for the better with technology.

Support our work with young disabled people, as well as our other services, by donating today

With your support we can make sure another disabled student has the chance to use technology that can open up their world.

Consumer power! M&S release new clothes range for disabled kids

Rita’s adorable young grandson Caleb has cerebral palsy. He needs nappies, and he’s also peg fed through his stomach, so accessible clothing with poppers is pretty essential. Rita noticed a huge gap in the market for affordable clothing for older children, and contacted Marks and Spencer to see if they could help. 

This blog has now moved to our online community.

Join Rita on our online community where she tells her story. 

20 poems for 20 years: my experience as a wheelchair user

When Stephen was 16, he had a sledging accident that left him paralysed from the waist down. That was 20 years ago, so to mark the anniversary, he’s written 20 poems telling his story. They reflect on his experience as a wheelchair user, and how he finds society’s attitudes towards disabled people. 

Having worked on this project for the past couple of years I hadn’t really appreciated how intensely personal the subject matter was. For some people, colleagues, friends and even family, this was the first time I had really outwardly articulated what was in my head.

Being viewed differently by society

The poems covered everything from my accident, to recovering in hospital, getting to know my wheelchair and how I now feel 20 years on. As I started to write and the poems began to come together, I realised I was also writing about how it feels to have a disability and how that changes the way you are viewed by society.Stephen smiling wearing sunglasses as the sun sets

So I was pretty nervous when I came to post my first poem via social media. I used Lego figures to visually represent what I penned in poem form, because let’s be honest you are never too old for Lego!

My reasons for doing this were not so much about the anniversary itself but more about my reflections on spending my adult life as a wheelchair user. Not for a moment do I regret my accident. Life is simply too short. I’m very proud of who I am and what I’ve achieved but life isn’t and hasn’t been without its challenges. Naturally some of these challenges have been down to adapting to a new life with a physical disability but some have also been about my frustrations at being given a label and having to deal with the way disability is viewed in today’s society.

An emotional journey

Whilst all of my poems provoked some sort of emotion internally when I wrote them, it was the ones about discrimination that caused the strongest reaction. One of my poems is called The Acceptable Discrimination, and this is about the fact that in many situations it seems okay that there are barriers that stop disabled people from just being able to lead a normal life.

I live in London and whilst it’s a wonderful, thriving and vibrant city, it can also be incredibly frustrating. Every day things are made difficult or impossible just because it’s not set up to cope with disabled people. The easiest example of this is the sheer number of public buildings, shops and amenities that are no go areas due to steps.

Public transport is also nothing short of a national disgrace. The fact that large parts of the London underground are without lifts and level Stephen, in his wheelchair at the top of a skateboard ramp, with graffiti in the backgroundaccess to the trains is staggering to me. It’s also virtually impossible to travel on any overground train without assistance. We’re told this is because some stations are old or that trains are too high, yet in Scandinavia I’ve travelled on trains independently where every fourth carriage is lowered to the level of the platform. It really isn’t that hard.

Attitudes towards disabled people

I honestly believe that most of this is down to attitudes. We still live in a society where many people don’t think twice about using a disabled toilet, parking in a disabled parking bay or in front of a drop-down curb. Nobody would entertain using a loo for a different gender so why should a disabled toilet be any different? Just as frustratingly there isn’t a day goes by where I’m not asked if I need help, or being randomly congratulated for doing simple things such as living on my own, having a job or going on holiday.

Changing the way people see disability

The reaction to the poems has been brilliant and I’ve been overwhelmed by the comments I’ve had. What has struck me the most has been that some people have said they have challenged the way they think about disability. For me this is the biggest compliment I could receive.

I’d love nothing more than if we just looked at the person rather than seeing their physical appearance, race, age and gender first. We’re all the same really and we all have the potential to be brilliant. 

Here are two of my poems that I hope you will enjoy:

The arranged marriage

The first time we met I didn’t want you.

A lego man lying in a bed, with a wheelchair and a set of drawers next to himI didn’t want to even acknowledge your existence.

I had no choice but to take you and I resented you for that.

You were confident, brash, everything I wasn’t.

But in your own way you needed me.

There were others waiting to take you.

But you and I were brought together.

We had to make it work.

The first time was awkward,

I didn’t know where to put my hands.

Fumbled across the room.

You were patient, you made me take it gently.

And the first time we went out,

It was awful.

I cried hot, childlike tears.

I felt everyone was staring, judging us.

But you didn’t care.

You waited, patiently till I was ready.

And we haven’t looked back.

20 years

Man and chair.

The acceptable discrimination

I am denied entry because of who I am.

Hairdressers, restaurants, theatres and gyms.

A lego figure in a wheelchair, at the bottom of some stairs. At the top of the stairs is a lego waiter offering a glass of wineMany seemingly a step too far.

Unable to travel where I want on public transport.

Those special parts of the city forever out of reach.

That is until someone decides to give me a lift.

Not able to live or work where I choose.

Having to ask for help when all I want is just to blend in.

Made to feel like a second class citizen in a first class world.

This is the discrimination I face every day,

for physically being different.

But I am the same.

I commute, I work, I pay my dues.

I’m tired from the effort, this city, of it just being ok.

Tired of the fact it happens and is somehow tolerated.

Tolerated and ignored by those with the power to make a difference.

But it’s actually their indifference,

that makes it acceptable to turn the other way.

Have you got a similar experience of becoming disabled later in life? Have you found that attitudes towards you have changed?

You can read the rest of Stephen’s poems on Storify or his website, and follow him on Instagram and Twitter. 

When is diving out of a plane a good idea?

Scope’s Digital Film and Media Officer, Phil, talks about his experiences of doing a sponsored skydive for Scope. Visit our website to see what fundraising events you can get involved in this year.

Phil smiles wearing a skydiving jumpsuit

I started work at Scope in November 2014 and within a few months I decided I wanted to do some fundraising. Now, I was a little too lazy to stop eating cake to do a marathon, which also meant that a Machu Picchu trek was a definite no. Because of this, I came to the ridiculous decision that I should do a skydive.

I have many fears… Spiders, clowns and even a ridiculous fear of seaweed (you know, when it brushes up against your leg while you’re swimming in the sea?). But one of my biggest fears has got to be heights.

What better thing for an acrophobic person to do than fling themselves out of a plane? For some reason, it seemed like such a good idea at the time!

Raising the cash

With only a few months to go until the big day, I had to get some serious fundraising underway.

I started with the usual route of sharing my JustGiving page with family, friends and across my social media channels. This got a fairly good response with just over £200 being collected in a week.

However, I knew I needed to do more. I decided to step it up.

My first port of call was Krispy Kreme who offer dozens upon dozens of doughnuts to fundraisers at a reduced cost (find out more about using Krispy Kreme doughnuts for fundraising on their website). One morning, I brought in 120 to the office. News spread and I soon had a large queue forming at the stall I’d set up in reception. Not only is it a surefire way to raise lots of cash but if there are any leftover, you’ve got some scrummy treats to make your success taste even sweeter.

Next was my raffle. I scoured the local area and came up trumps with a whole host of amazing donated prizes. From a signed Man Utd shirt to a pair of cinema tickets to a case of locally brewed ale – there was something for everyone! This is a fundraising technique that everyone should think about doing. All you need is a letter of authorisation from the charity you’re raising money for and to be ready to sell your cause to potential donors.Phil stands in front of a plane with his skydiving instructor

The money was coming in thick and fast now but I wanted to do one final push to raise those last few pennies. I organised a pub quiz at Scope HQ which had a great turn out. There were prizes, drinks and lots of laughs. All in all, it was a fantastic evening.

At the end of my (tiring!) fundraising, I’d managed to raise around £1000, which I was extremely happy with. That was the hard part over. But the hardest part was just around the corner – the skydive.

Facing my fear

The day of the skydive came around so quickly. I’m not even going to pretend that I was calm and collected at this point. Words cannot describe how terrified I was. The video below should give you a good idea of what the day was like.

I would urge everyone to take part in a fundraising event, especially an adrenaline event such as skydiving. What an experience!

My top tips

  1. Start your fundraising early. This will allow you to take your time thinking up the most effective money raising techniques.
  2. Think big. Without doing this, I wouldn’t have got the massive collection of prizes donated by larger companies (including VUE cinemas, Manchester United and Naked Wines)
  3. Persist! You may think you’re annoying people across social media with your constant fundraising asks, but you need to drive the message home in order to raise the maximum amount possible.
  4. Update everyone involved. Make sure you send an update and a thank you to everyone involved in the success of your fundraising efforts. For example, I sent a personalised thank you letter to every company and individual that donated a prize for the raffle.
  5. Have fun! Make sure you fundraise in a way that feels fun and makes you happy – it will feel so much less of an effort this way. If you love baking, do a bake sale!

Phil during his skydive, falling through the air with his thumbs up.

Inspired by Phil conquering his fears? Find a fundraising event you can get involved in this year. 

Scope’s Romance Classics #EndTheAwkward

Scope is celebrating Valentine’s Day by releasing swoonsome recreations of iconic Mills & Boon book covers – starring disabled people.

Just like more than a century of Mills & Boon cover art, Scope’s spoofs feature softly-lit scenes of blushing heroines and chisel-jawed hunks.

Scope Romance Classics comes after our recent poll* shows that just 6% of people in the UK have been on a date with a disabled person they met through an online dating site or app like Tinder.

Our previous research also found just 5% of people who aren’t disabled have ever asked out, or been on a date with, a disabled person. And less than one in five (16%) have invited a disabled person round to their house.


Scope Romance Classics are based on some of the racy and romantic stories that disabled people shared as part of our illustrated A to Z of sex and disability.

‘The Sensual Scribe’ by Penelope Friday

An illustrated spoof romance novel, 'The Sensual Scribe'Erotic fiction author Penelope started writing erotica featuring protagonists with disabilities when she started thinking about the lack of disabled characters in the genre.

“It was as if disabled people never had sex: we didn’t seem to exist in mainstream erotica. Sadly, this ‘disabled people don’t have sex’ attitude is one I’ve experienced in real life: I have an invisible disability (ME) and am treated like two different people, depending on whether I’m in my wheelchair or not.”

Our Sensual Scribe blogs about challenging attitudes through her work and why it’s important for mainstream publications to print erotica that features disabled people.

Read ‘The Sensual Scribe’ by Penelope Friday.

‘On the Prowl’ by Romina Puma

An illustrated spoof romance novel, 'On The Prowl'Romina is a comedian and has muscular dystrophy. In the run up to Valentine’s Day, she’s been using online dating apps in her search for Mr Right. The hunt is proving fruitless, as the matches she makes seem more interested in asking awkward questions about her impairment than getting to know her as the fabulous and funny person she is.

“Sometimes they ask me questions about my condition – what it is? Can I have sex? Yes I can! Everything works properly down there, don’t worry about that,”

Read ‘On the Prowl’ by Romina Puma.

‘One Track Mind’ by Mik ScarletETA valentines cards Mik_v3

Broadcaster and journalist Mik started to explore alternative erogenous zones after a spinal injury in his teens left him unable to get an erection.

He reveals how to create orgasmic erogenous zones anywhere on your body and how to enjoy ‘thought orgasms’ by conjuring up your sexiest, X-rated fantasies.

“There are many differing techniques so it might be worth trying a few to see which suits you. But trust me; it really is possible to orgasm even if you are paralysed from the neck down.”

Read ‘One Track Mind’ by Mik Scarlet.

‘Recipe for Romance’ by Ronnie Murray

An illustrated spoof romance novel, 'Recipe for Romance'Ronnie, who is group head chef at Mark Hix restaurants, has a shortened left arm.

He shares some sexy, stamina-inducing recipes for breakfasts in bed that will keep your lover’s strength up the morning after Valentine’s Day.

Read ‘Recipe for Romance’ by Ronnie Murray.

Get reading and share your favourite story on social media. Read more stories like this on our A-Z of Sex and Disability.


*On 1-2 February, Scope ran a Google poll of 500 people in the UK asking: Have you ever been on a date with a disabled person that you met through a dating website or app? Just 5.6% of people said ‘yes’, compared to 94.4% who answered ‘no’.

Scope’s Romance Classics: Romina Puma is ‘On the Prowl’

An illustrated spoof romance novel, 'On The Prowl'Romina Puma is a sexy comedian searching for Mr Right, and her hunt has led her into the deep dark jungle of online dating apps.

However, her online matches seem more interested in asking awkward questions about her muscular dystrophy than getting to know her as the fabulous and funny person she is.

Undeterred, Romina is using her stand-up to challenge attitudes to sex and disability.

This blog contains frank information about sex. It’s meant for people over the age of 16. 

Disabled people have sex and do it in different positions just like everyone else. One day it dawned on me that I’d never seen a Kama Sutra for disabled people – and why not?

Luckily, Google had the answer. I found a Kama Sutra poster for disabled people and took it to the stage – well the softcore version anyway!

Don’t get me wrong there are some limitations with the poster – it’s designed for male wheelchair-users for a start. A few times in my set I’ve loved inviting male audience members up on stage, to sit in my wheelchair and try out a few of the positions with me. It can be fun but it depends on what kind of an audience you have!

Initially, it was just something fun to put in the act but after experimenting with it on stage, I thought it would be great to try out some of the positions… But I soon realised it was much easier just to go to bed – I guess I’m just a creature of comfort!

The hunt begins


I decided I might find my dream man online. So I got busy. The first one I tried was Plenty of Fish, then I tried Tinder, then I went on Ok Cupid, then I tried Guardian Soulmates – you think if people are paying to subscribe then they’re into something more than just a one night stand.

I was on Guardian Soulmates for one month and no one contacted me. It was really upsetting, like – wow, not even one person got in touch with me. It was really weird. So I’m not on there anymore.

I’m still on Tinder. I use it like playing solitaire, swipe, swipe, swipe – when I’m bored.  I get to chat to guys, get some material out of it – it’s fun and then sometimes every now and then you go on a date or you might hang out with that person for a little bit.

When’s the right time?

In the beginning all the pictures I uploaded of me online were without any aids. But then there was always this awkward moment of when is the right time to tell them I have muscular dystrophy?

If we go on a date I can’t just turn up with my wheelchair because they’re going to be shocked!

I would often match with someone on Tinder, start chatting to them and then it would get to a point when we’d arrange a date I would have to say: “Listen I have to tell you something before we go on a date, because I want to be honest and I don’t want you to get a shock, I have muscular dystrophy and I use a wheelchair”.

Some said “no – I can’t do it”. They cancelled. Some were up for new experiences and would meet up with me out of curiosity to find out what it would be like to go on a date with someone who’s disabled.

Everything works properly down there…

I got to a point where I had enough with having these awkward moments and conversations. It’s really hard to digest when guys don’t want to go out with you anymore because you’ve told them you are disabled and you use a wheelchair.

So I decided to change my profile pictures and use ones of me standing with my crutch or in my wheelchair, so they can see I am disabled.

I still got my matches on Tinder but the number of guys who wanted to chat to me dropped completely. Normally I’d have a few guys contact me every day. After I changed my picture, it took ages before someone messaged me. I tried messaging some guys, some would chat back but then that just gets boring after a while.

At least now I don’t have that awkward moment to deal with. Sometimes they ask me questions about my condition – what it is? Can I have sex? Yes I can! Everything works properly down there, don’t worry about that.

I think for that reason – I had to put something it in the show – these experiences have shown me I have to try and change people’s perceptions as much as I can. I’m still waiting for someone to help me try all the positions in the Kama Sutra – can you believe it? – I haven’t had any takers yet!

Romina shared her story as part of Scope’s Romance Classics. You can read more sexy stories from our authors:

Read ‘One Track Mind’ by Mik Scarlet.

Read ‘Recipe for Romance’ by Ronnie Murray.

Read ‘The Sensual Scribe’ by Penelope Friday