Tag Archives: Emily

O is for orgasm – #EndtheAwkward

Is your partner having a good time, or are they having a seizure? As Emily explains in this video, it can be an easy mistake to make. 

O is for orgasm is part of Scope’s A to Z of sex and disability.

Find out more about Emily. O is for orgasm is part of Scope’s A to Z of sex and disability. Read the rest of the A to Z.

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.

The financial strain of disability #100days100stories

39 year old Emily lives in Eastbourne with her husband and four children – Lucy, 16, William, 12, Oscar, six, and Reuben, who’s four. Both the younger boys have autism, and Emily has had Myalgic Encephalopathy (ME) for many years, which means her energy and movement have been limited. She is recovering now, and has recently returned to work, but she still uses a wheelchair for long distances. In this guest post as part of our 100 days, 100 stories campaign, Emily describes how her family is trying to meet the extra costs of disability.

Food

The boys have a lot of difficulties with food and there’s lots of wastage. If they get some bread or cake or a banana, they will eat part of a slice, throw it on the floor, get another, and throw that on the floor. They’re also very faddy – one day they want eggs on toast and the next day it’s oranges. Sometimes they won’t eat at all; another day one will eat dinner, but the other won’t.

Clothes

The boys often need particular materials and certain fabrics are a no-no, so we’ve wasted money on things they won’t wear at all. Oscar insists on wearing one sock at night; the other sock gets separated so I end up with a sock nightmare! Reuben loves playing outside in the garden, but will get very muddy, jumping in puddles and sitting down on wet surfaces that other children would probably stay away from at his age.

Washing

We get through a lot of washing powder with extra continence problems. Ozzy is only just out of nappies at six; Reuben still wears them 24 hours a day and he’s four. He has nappy leakages at night, and spills a lot of milk on the bed, so that’s extra washing. The other day Oscar put his hand down his pants and smeared poo in his bed. When Ozzy was in nappies, we would dress him in five layers of clothes to stop him smearing everywhere, but now that he’s potty trained he needs to go to the toilet himself at nights, so he goes to bed in pants and pajamas. It’s a difficult decision between teaching him independence and keeping things clean.

Learning

I’ve tried to get the boys interested in reading since they were babies, but it’s been a struggle. Ozzy’s just started showing an interest, but Reuben’s just not interested because of his speech and language delay – so books end up getting ripped up, partly in frustration and partly from excitement I think.

I have to think outside the box and use online games and reading apps. Both the boys are fixated with screens, so we try to use them productively. If we could afford an iPad with the right apps it could really help Reuben learn to communicate.

Toys and play

Emily's husband and four children on a park bench eating icecream
Emily’s husband and four children

They’re very destructive in their play and exploration, and get through toys like no one’s business. Reuben goes to his bedroom, pulls all the drawers out and empties all his toys on the floor. I think perhaps all toddlers are destructive, but the boys have been in this stage for five years. They also play with everyday items around the house – things from my desk, the kitchen, the bedroom and the bathroom. This isn’t only an extra expense on replacing the items, but also wear and tear on the house.

Supplements

It’s only because I’ve worked hard at trying out different combinations of supplements and pacing my rests throughout the day that I’ve managed to get to a place where I can return to work. I take D-Ribose energy supplement, which boosts energy and recovery. That’s the most expensive, at £18 per 250 ml. Without it, I wouldn’t be able to get out of bed. Then there’s Aloe Vera juice, vitamin D, evening primrose oil, among others. I easily spend £50 a month on the lot, possibly more. They all really make a difference.

Toiletries

I’m really sensitive to chemicals and had to change shampoos and bath stuff to dermatological and natural ingredient products, but it’s very expensive to trial and error those. The boys also get psoriasis and eczema so they need to have special toiletries. The consultant recommended having lavender oil in their bath to try and calm them at night, so I managed to source a big 100ml bottle for the same price as a 10ml. But all this takes time and research, and you’re not always successful finding a good deal.

Travel

To go shopping I hire a mobility scooter, which costs about £100 over the year. We’ve had to replace car seats because Reuben’s an ‘escapeologist’ who manages to get out of most five point harness car seats, and we’ve had to replace buggies over the years. Car parking can be expensive, especially in hospitals. When you’re transporting two autistic boys, public transport is not a valid choice because of the safety issues with the boys running off in a random direction.

Looking to the future

We use the boys’ DLA (disabled living allowance) to help with their care, so we have an extra pair of hands on the school run to keep them safe, and to help us keep on top of the washing, extra tidying and cleaning.

I’m happy to be back working, but the financial state we’d gotten into by me not being able to work was getting really bad, and we were getting heavily into debt. We sold our flat to pay off our debts, and moved into rented accommodation.

If I hadn’t recovered enough in order to be able to get a job, we’d be really struggling still. With both of us working, we can now cover all the high costs of living, and the extra expenses that come with our beautiful boys. We can’t take them to therapeutic groups or swimming in the evenings, as I don’t get home in time; but just like everyone else, we’re doing the best we can with what we’ve got.

Life costs more if you’re disabled. Read more #ExtraCosts stories