Tag Archives: relationships

The things that people say never go away

Our new report, The Disability Perception Gap, reveals the extent of the negative attitudes that are held towards disabled people – and how many non-disabled people don’t realise the scale of the problem.

Marie is a college tutor, wife and mother whose experiences feature in the report. In this blog, she revisits some funny and not so funny moments, and talks about the impact of negative attitudes.

I’ve got osteogenesis imperfecta, also known as brittle bones. It means my bones can break easily so I use wheelchair, I can’t stand or walk. I’ve experienced negative attitudes throughout my life – some awkward moments you can’t help but laugh at, and others which have actually held me back from living my life.

Because I’m disabled I couldn’t possibly have a love interest

I can’t tell you the number of times people have bumped into lampposts or tripped over on the street because they are too busy staring at me. When I’m out with my husband Dan, it can be even worse.

Once, when we’d just started dating, we were on the way home from the pub, holding hands and we stopped to look at the stars. What could be more romantic? A kiss seemed like the natural thing to do.

After a moment, I became aware that a police car was driving past very slowly. The officer was staring out of the window and was concentrating so hard on us that he ended up mounting the pavement and crashing into a street sign. We couldn’t believe it! A few seconds later he sped off, clearly embarrassed.

We still laugh about that incident now. We have to laugh – if we took these things too seriously it could start to mess with our heads.

Marie and Dan kiss outside the church on their wedding day
Marie and Dan share a kiss on their wedding day

We often hear people making comments. People don’t blink an eyelid if they see any other couple kissing in the street but because I’m in a wheelchair and Dan’s not, we become an immediate target. I think when people see us, they can’t quite believe that a guy who isn’t disabled could have fallen in love with me.

If Dan and I aren’t being affectionate, it’s a different story. Trying to convince people he’s my husband takes some doing. One time, a hospital consultant asked me if Dan was my dad! When I said no, she presumed he was my brother, then my uncle, and finally my carer. I let her go on and on before she petered out. It’s that  assumption that because I’m disabled I couldn’t possibly have a love interest.

I was told “We don’t have any jobs for people like you”

When I finished my degree in Health and Social Care in 2011 I didn’t have a lot of luck finding a job. I went to the Job Centre for support and their attitude was “Why do you want to work?” and “We don’t have any jobs for people like you.” There was no help or aspiration.

Being told not to bother working made me feel angry and upset. I’d spent so many years studying, I’d put everything into my degree, I’d worked in the past and I wanted to progress. It made me feel worthless, like I couldn’t contribute towards society like anyone else.

Woman wheelchair user holding a sign saying "#workwithme"
Marie features in Scope and Virgin Media’s employment campaign, Work With Me

I decided not to put that I was disabled on my CV because I felt like I wouldn’t get an interview. I often managed to get interviews but when I turned up I could tell by people’s reactions that I wasn’t going to get that job. I think it was largely because they didn’t understand my impairment and didn’t want to take the chance.

If you’re disabled, it can be difficult to progress in your career too. I’ve had many different jobs and at times I felt like I was being treated like a child because employers didn’t allow me to use my skills and knowledge. I ended up leaving one job. If people aren’t going to accept me for who I am and what I can do, why stay?

The things that people say to you never go away. There have been times where bad attitudes have made me feel like “What’s the point in working?” I just wanted to find an employer who would give me a chance, like anyone else would be given a chance.

This report is the start of something, not the end. We will be working to better understand how negative attitudes impact on disabled people, and how these can best be tackled.

There’s no single fix for this problem, and as part of our campaign for everyday equality for disabled people, we’d like to hear about your experiences and what you would like to see change.

Will you support our campaign by telling us your experiences?

E is for Experimenting – #EndtheAwkward

Some barriers mean that disabled people have to get creative. Emily Swiatek, who has non-epileptic seizures, tells us how she, like many disabled people, gets experimental in the bedroom.  

E is for Experimenting 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.

Emily S a-z3Being disabled encourages you to explore sex in a much more radical way. When we think about sex, the thing that comes into most people’s minds is penetrative sex.

But actually, a lot of sex – especially disabled sex – pushes the boundaries of that.

If I’ve had loads of seizures or if I’m just getting quite tired, it’s painful. And no one wants to have painful sex, so you have to explore new ways of having sex that are still fulfilling for both of us.

Sleeping with my carer

My partner is also my carer, and our sex life fluctuates – there have been times where I haven’t had sex with my partner for months and months.

It can be quite tough when there’s a care element with your partner. You wonder: are they your lover or are they your parent? But I think it’s okay to sometimes be like, ‘You know what? Sex isn’t a part of my relationship right now but it can still be fun. It can still be fulfilling.’ You just have to play and explore.

My partner and I actually have an open relationship. Part of the reason I like that is that I know that not everything has to come from me – and equally, my partner doesn’t have to be all things to me.

I value my partner’s sexuality really highly, and our open relationship means they aren’t stuck in this constant care role. So our relationship gets the space and the freedom to be a relationship.

Sex can be weird

Having sex with a disabled person can be really weird. One time I was having sex with someone, and it was really great, but then my brain flipped into seizure mode and I began to have a seizure.

We’d had a couple of drinks and the other person was really into it, so they kept going! I was shaking and they were like, ‘Brilliant!’

Eventually I managed to tap them on the shoulder and they realised I was having a seizure and were like, “Oh my god, I’m really, really sorry.”

I’m not unbangable!Emily S a-z2

When I think about sex and relationships and disability, the thing that springs to mind is Channel 4 programme The Undatables. Just look at the name – The Undatables? That’s not who we are.

I am in a long term relationship and have recently dated other people for fun on the side with full consent in an ethical way. I’m not undatable. I’m not unbangable.

Communication is key

Sometimes you’ll be in these places where you’re like, okay sex, I don’t want you. I don’t feel like you’re accessible to me.

Loads of disabled people take medications that mean we can’t have orgasms. Or our orgasms are these dull, weird versions of what they were. It’s really annoying.

But also it’s okay and if you’re with a partner where you can communicate you can still have really fun sex without an orgasm. It doesn’t have to feel that something is lacking.

What non-disabled people can learn

Non-disabled people have loads to learn from disabled people about how sex and relationships can be fulfilling in lots of different ways. It isn’t just a linear path towards sex nirvana.

I would love some non-disabled people to have a better sex life because of things they’d learnt from disabled people. That’d be amazing!

If you like Emily’s story, help us #EndtheAwkward by sharing it on your Facebook, Twitter, anywhere you like! 

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

Find out more about Emily on her blog.

#EndTheAwkward with a kiss


6 July is International Kissing Day and we’ve produced a new video to celebrate, ahead of a whole season of End The Awkward activity.

About our campaign

Our #EndTheAwkward campaign is about challenging attitudes to disability. Too many people feel awkward around disabled people, because they’re worried about saying or doing the wrong thing. This spills over to every aspect of life. Only 7% of people have been on a date with, or asked out, a disabled person. That means a lot of people missing out on date nights with some pretty great prospects.

Why we’ve produced this film

Our Kiss video shows that when you get down to it – literally – we’re all the same and it’s about personal connection and chemistry. We want to ‘Kiss awkward goodbye’ by showcasing disabled and non-disabled couples kissing. By showing this unapologetically, we can help break down awkward barriers that currently exist.

How to get involved – without kissing someone!

We want people to ditch their assumptions about disability, get over their awkwardness and just relax. Dating, sex and relationships can be awkward at the best of times. It’s always better to just chill out a bit. Focus on the person and the connection, not the impairment.

A big part of the campaign is encouraging people sharing their awkward moments. We hope this video will get people thinking differently about sex and disability – but also prompt people to share their stories and get involved at our Awkward hub. We’ll be publishing awkward stories regularly through the campaign too.

So pucker up. Enjoy yourself. And let’s kiss the awkward goodbye!      

Share the film on Facebook

Share the film on Twitter

How to keep your relationship strong

Tomorrow is Valentine’s Day and love is in the air, but if you have a disabled child, you may find your relationship takes a back seat. Parenting a disabled child can put a significant strain on your partnership, so take a look at some of these top tips from the Netbuddy community (now part of Scope):

Parents of a disabled child sitting close together

Keep talking

It’s very easy to get stuck in a rut where all you talk about is the kids, appointments, work and domestic stuff. Make sure you keep talking about all the other interesting things that once brought you together and interests you share. Don’t let that go!

Trust your partner to parent

Trust your partner to parent. Sometimes we shut them out and do things ourselves without giving them a chance.

Do something nice every day

When we married, my husband and I vowed that we would endeavour to do something nice for each other every day, small tokens like making a drink or running a bath. In turn, the other person would always appreciate this effort and thank them, not taking it for granted.

Make time

Try to make time as a couple, even if it’s only to have a chat over a cup of tea once the children are in bed. Talk and listen to each other. Washing up can wait!

Make light

My husband and I play a game where we place bets with each other which of our three disabled children will wake/kick off etc at what times. The ‘winner’ gets a treat from the other partner. Sounds silly, but making light of intensely stressful situations really does help us cope.

Keep communication open

Have an agreed plan of how to manage your child and keep communication open between yourselves.

Think positive

Learn how to think positive in moments of stress.

Family with a daughter in a wheelchairShare it with your best friend

You have to learn to laugh through the stress together or it will crush your relationship. There are ups and downs daily. Communicate everything … fear, anger, humour. Cry, laugh, love, share with your best friend.

No blame

Communication is the key to everything. Understanding that sometimes we get it wrong and not blaming each other.

Share issues

Make sure you both understand your child’s condition and what it means, so you can talk about how to approach issues. When one of you works full time and the other goes to all the appointments, it’s easy for the working partner to feel pushed out and in the dark. That can lead to them giving up trying, so the full-time carer feels unsupported.

Play to each others’ strengths

Play to each others’ strengths. I’m good at paperwork. Hubby is great at housework. So I sort school letters, DLA forms, statements etc. Hubby hoovers, mops etc.

RespectHappy couple with disabled child

Respect is very important. Respect your partner’s opinions even if you don’t share them. That will allow you to move on through disagreements and focus on the positives.

Leave a note

Leave messages around the house for each other to find, reminding the partner how they are appreciated/loved … or sending a text message.

Let them help

Let your partner help when they can. Yes, they may do things differently, but that isn’t necessarily a bad thing.

Communicate your feelings

Dealing with the stress involved with having a child (disabled or not) amplifies any problems that already exist. Every day I thank my lucky stars that my wife is with me and that my daughter is well … and I tell them both as often as I can that I love them and appreciate all they do. My tips would be communicate, listen and support.

Ask yourself …

‘What is the one thing I can do this week that will make my partner feel special?’ and plan time in the diary to do it.

Sleep on it

Sleep is very important. If you are both sleep deprived, arguments are much more likely to happen. Try taking it in turns to get up at night so one person always has a full night’s sleep.

To see more great relationship tips, and to add your own, please visit netbuddy.org.uk