“Just because I can’t speak doesn’t mean I have nothing to say”

October is International Augmentative and Alternative Communication (AAC) awareness month. As Hilary Gardner from Communication Matters explains, there are many ways of communicating, not just with words.

Humans are great at communication. You might think I mean talking, but we communicate with our whole bodies – our hands, our eyes, our faces. We certainly know when someone is angry or happy without them needing to say! Of course, words are very powerful tools too, and we all enjoy a good story, whether it is read out of a book or spoken. Some people use very long sentences and others use single words that give just enough information.

There are many reasons why people cannot speak. They may never have developed the ability to speak out loud or they may have lost the ability to speak due to an illness or accident. However, they will have understanding of language ‘in their head’ – even if they can’t speak the words. It is important that we include everyone in a conversation and give everyone a chance to express themselves. Luckily there are other ways of communicating with words, not just talking.

Alternative means of communication

“Just because I can’t speak doesn’t mean I haven’t anything to say” is a thought expressed by many people who use AAC – augmentative and alternative means of communication. Sign systems, such as Makaton and British Sign Language can be used with people from a very young age. There are picture and symbol systems that can be presented on their own or in books and on communication boards.

Boy using AACMore and more these days, children and adults are using electronic communication aids however. There are complex computer systems that enable those with physical restrictions to compose sentences. More recently simple ipad apps will have grid displays of a series of pictures or written words that will speak when touched. For those who don’t have good control over their hands they can use eye gaze and switch equipment to control the picture selection.

Communicating is about talking with one another. The important thing to remember is don’t be anxious about talking with someone who uses AAC. The key is to talk to the person, not the device and leave time for people using AAC to form a message, as the AAC device is slower than when we speak.

We are delighted to have two trustees from Communication Matters answering your questions on our online community this week, so please do drop them a line!

Also, check out these great tips for communicating with people who have no speech, which have all been contributed by members of our online community.

For further information about Communication Matters, please visit their website.

M is for Myths – #EndTheAwkward

The biggest myth going has to be that disabled people can’t have sex. They can and they certainly do, so let’s put that myth to bed.

M is for Myths is part of Scope’s A to Z of sex and disability. This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

Disabled people can’t have sex. Disabled people have to pay for sex. Disabled people aren’t sexy.

Broadcaster and journalist Mik Scarlet tackles these myths and more in this ten-minute film about sex and disability.

Warning: This film includes content of a sexual nature (obvs!)

For a transcript of the video and more handy tips and hints click here.

M is for Myths is part of Scope’s A to Z of sex and disability. Read the rest of the A to Z

K is for Kama Sutra #EndtheAwkward

No matter the disability. There’ll always be a position that brings that a smile to both your faces.

Many consider the Kama Sutra to be the Bible of sex. But disabled people are bringing these ancient positions into the 20th century. Whether you like to flip upside down, do it doggy-style or reverse like a cow girl – everyone has their favourite. And Romina Puma, a comedian who has muscular dystrophy, is no different. In this video, she reveals the ins and outs on how to get jiggy with it Kama Sutra style.

This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

K is for Kama Sutra is part of Scope’s A to Z of sex and disability. This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

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 anDSCF1376-edit_halfd 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!

Know what you like

For me personally, I know what kind of positions I like and which ones I can perform in for longer with my impairment. Just because you’re disabled it doesn’t mean that part of your life is over. I can have sex normally. Obviously, I don’t have the strength to do certain positions for a long time – but who does?

Sex is awkward for everyone – so it’s important to be open with your partner. If they understand how to pleasure you, it will help avoid people feeling awkward.

I’ve done research to understand how other disabled people with different impairments have sex to get some tips about positions and aids, such as using pillows to make things more comfortable.

But it’s not only your partner who needs to be open-minded. It’s so important to know your own body– and your limits too. Once you know this, then you can play around. It’s always nice to be able to explore and try.

It’s the same for people who aren’t disabled – there may be certain things they like and other things they don’t like. There has to be a connection with someone, where you can talk freely – like “do this”, “go there”, “do that” – give some directions here and there.


Changing perceptions

In my shows I try and change people’s perceptions on sex and disability as much as I can. I’m still waiting for someone to help me try all the positions in the Kama Sutra. But can you believe it – I haven’t had any takers yet!

Please share Romina’s blog using the buttons below. And check out the next letter in our A to Z of sex and disability – L is for Lips.

You can watch Romina’s saucy set at the Backyard Club in Bethnal Green, East London, on Sunday 8 November at 3.30pm.

J is for Johnny – #EndTheAwkward

Condoms are slippery little things. So if motor skills are an issue for one of you, remember it takes two to tango… you’re both responsible for safe sex.

This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

J is for Johnny is part of Scope’s A to Z of sex and disability.

Whether you’re disabled or non-disabled, condoms (aka johnnies) are the only method of contraception that can help protect against both pregnancy and sexually transmitted infections. Male condoms fit snugly over the erect penis and female condoms fit inside the vagina and loosely line it.

Many people find it awkward to talk about condom use, especially at the start of a sexual relationship, but if you’re going to have safer sex then it’s something you’ll have to talk about at some point!

Non-disabled people might worry about whether a disabled partner will be able to use condoms. Male condoms in particular can be really fiddly to handle, especially for people with physical difficulties such as not being able to grip easily.

But, there’s no reason to let that stop you, Mel Gadd from FPA – the sexual health charity – describes the various options when it comes to safer sex.

Male condoms

Many people, regardless of whether or not they have a disability, enjoy sharing the responsibility of putting condoms on. Rather than being a source of embarrassment, it can add to the pleasure of sexual intimacy and can also help maintain an erection whilst putting the condom on as you don’t lose the ‘moment’.

If you want to put a condom on your partner but have difficulties with your hands, you may find that you can put it on your partner’s penis by unrolling it gently down the shaft of his penis with your mouth. Always popular!

Or if your male partner has trouble opening a condom pack, offer to do it and put the condom on for them.

There are also condoms which come in easy-to-open packs, like this latex-free one from Pasante, which always comes out of the pack the right way up, to make putting it on less fiddly.

A condom for everyone

Just like men come in all different shapes and sizes, so do condoms – they vary in length, width and shape, some are straight, while others are flared at the end, to better fit the shape of the penis.

It’s a good idea for men to try out different sizes and see which feels most comfortable, and preferably not in the heat of the moment when it’s more likely you’ll give up and not use a condom at all if it doesn’t fit. If you need a helping hand from a partner to test out different condoms, don’t put pressure on the situation to end in penetrative sex; use it as an opportunity to experiment and remember there are lots of different ways to enjoy sex.

Female condoms

Female condoms can be much easier to use for people who have difficulties with their hands or if your or your partner’s penis doesn’t stay fully erect.

Female condoms also have the added benefit that the outer ring can rub against and stimulate external sexual parts such as a woman’s clitoris. You don’t have to be female or have a female partner to use a female condom; male partners can use them too!

Can condoms go with catheters?

Yes, you can use condoms with catheters. Male condoms are stretchy and will fit over an erect penis and a catheter tube, just use some water based lubricant to help keep it comfortable, and female condoms, although not as stretchy, are plenty wide enough to accommodate catheter tubes.

Water-based lubricants

It’s a good idea to use a water-based lube (oil-based lubes and products such as petroleum jelly are best avoided as they can damage many types of condom) to enhance the pleasure of sex and reduce any unwanted friction that may cause condom breakages.

So don’t let awkwardness stop you enjoying fabulous safer sex. Most people, disabled or non-disabled, experience some obstacles and tricky moments in finding their way to sexual pleasure, but often these can be easily overcome.

More safe sex information:

J is for Johnny is part of Scope’s A to Z of sex and disability.

I is for Intimacy #EndTheAwkward

Certain impairments mean some things are shared sooner than they would be otherwise. This can result in a greater level of intimacy… a good thing in any relationship.

Sam Cleasby was diagnosed with ulcerative colitis in 2003 and had a colectomy and ileostomy in 2013. Her brilliant blog, So Bad Ass, is about living with Inflammatory Bowel Disease and how it affects relationships, work and family life. It’s about breaking taboos, sharing experiences and improving self-esteem – as Sam says it’s “for all you bad asses with bad asses.”

For Scope’s A to Z of disability and sex, she reveals the impact of her condition on her relationship with her husband.

I is for Intimacy is part of Scope’s A to Z of sex and disability. This blog contains frank information about sex. It’s meant for people over the age of 16, please only continue if you are 16 or older.

My husband, Timm, is my rock. He is always there for me, physically and emotionally. He tells me I’m beautiful when I know I’m a sweating, weeping wreck.

When I’m down he is the one person who can make me laugh. At my lowest points he has said “I love you hairy moonface”, a reference to the side effects of the steroids I was prescribed, which always makes me smile.

We’ve been on quite a journey. There have been times when I’ve shut him out and I’ve learnt that being open and honest with each other is absolutely the only way forward.

I’d never heard of ulcerative colitis before I was diagnosed in 2003 and in those early stages I was trying to understand it all. It was my bowels, I was bleeding a lot and having incontinence accidents – you don’t feel at your most attractive! It was hard for me to have an open conversation about it.

There were years of flare ups and remissions, I never knew when a flare up was coming or when it would end. There were hospital admissions and drugs that brought a long list of side effects, including insomnia, weight gain, hairiness, mood swings, anxiety and many more.

After a particularly bad hospital stay, I felt extremely depressed and low. I told Timm to leave me. I wanted him to know he had an out. I just couldn’t imagine how he would want to be with me.

But I know now that was entirely down to my own low self-esteem.

Timm was very understanding. He left me to it. I needed to understand how I was feeling myself before we could talk about it. But I think he felt a bit pushed out.

Being open and honest

Sam and Timm_twothirdsHe was thinking it was him and I was thinking it’s all me. It was really important for us to just be open and discuss it. He let me know that whatever happens we are going to be together. And I explained that there are times when I feel like I don’t want people to be close to me.

In September 2013, I had a sub total colectomy and end ileostomy. I now have no large bowel and for a year lived with a stoma and an ostomy bag to collect all my waste. I now have an internal jpouch. Although I no longer have the external bag, I do need to go to the toilet often which can be challenging.

So that was another big thing to overcome – having an ostomy bag filled with poo in the bedroom. I offered to sleep in the spare room, but Timm wouldn’t have any of it. He flipped it around and said: “How could you believe I wouldn’t want to be intimate with you? Would you think that if it was the other way round?”

At first, I used to try to hide my stomach and wear longer clothes. But eventually I just couldn’t be bothered; it was taking up too much head space. Going to bed, I’d think about how I should cover up. My husband said every time I was pulling my vest down, he thought she’s not enjoying being with me. So getting over myself has made everything much better.

Feeling sexy

If you look for pictures of people with ostomy bags you find images of old ladies in hospital beds. I looked at them and they frightened me, and when I looked in the mirror I saw a tiny person hidden behind a huge ostomy bag.

My husband’s a super-talented photographer so it felt completely natural for me to confront issues of body confidence through imagery. I knew the person I was before, under my scars, dressings and emotional pain, was in there somewhere and the camera helped me find myself again. In the photographs, I saw me and a tiny bag.

The 1950s pin-up style shoot we did ended up going viral and I had some really positive feedback from regular readers of my blog and total strangers.

Sam photoshoot_twothirds

But there were a few comments about sexualising disability and I wondered if I was guilty of that? The short answer is f*ck yeah and why not! My sexuality, my femininity and the person I am didn’t get removed along with my colon.

But I think there is a wider point about how disability is seen in society and also how women are viewed in society.

I wouldn’t say I sexualise my disability, I would say I normalise it. I show photographs from every part of my life, hanging out with the kids, with my husband, my mum, in gym gear, at the beach. And I show all parts of my life because my condition and my disability do not change all those parts of me.

Please share Sam’s story on Twitter and Facebook using the buttons below. And check out the next letter in Scope’s A to Z of sex and disability – J is for Johnny.