In this feature, Social Care Today reporter Tamara speaks with Jennie Williams, CEO of Enhance the UK – a charity which is working to destigmatise sex in disability spaces. They are passionate about supporting people with disabilities to lead full and active lives and are raising awareness around how disabled people’s sexual and emotional needs often go unmet.
Their current campaign aims to stamp out sex stigma in social care settings.
Going back a lot of years now, I’ve always worked in social care. And I was noticing that in people’s care plans, there was never really any information around sexual identity and sexuality. I don’t think I would have even used those words then because I didn’t know what I was looking for.
I remember thinking that why is that if you are a disabled person and living in a care environment automatically you only get offered a single bed? That always felt very infantilising to me. The way care home rooms are designed, many of them don’t even have enough room for a double bed. I just remember thinking that I’m in my 20s and sleeping in a double bed. So why isn’t this happening for other people? That’s probably one of my first memories of wanting to do something about this.
I was working for a large disability charity at the time and I tried to start these conversations and I just kept getting the same answer: ‘No, no, it’s not appropriate’. So I started something really basic called the ‘knock-knock’ campaign. I was just putting a posters on people’s doors saying ‘knock-knock’ because carers were walking in without knocking and they would find someone masturbating, for example, which was then deemed as inappropriate behaviour. So the only time anything was ever written down in their records around sexuality was because of alleged inappropriate behaviour, like masturbating in their own bedroom, in their own private time.
It’s taken years for people to take us seriously, but we now run the general disability awareness training, and then the money that we make from that goes into the Undressing Disability campaign. But you can’t do one without the other. Because there’s no point trying to empower disabled people to feel sexual and go out on dates and go and buy clothes and go and get their hair done, get waxed, or whatever, if the general population doesn’t understand their basic access needs.
Sexuality isn’t just about physically having sex. It’s about how you express yourself and what makes you feel good, makes you feel attractive and most importantly makes you feel like you and you can be seen. I always like to have my nails done as I also use British sign language and I like my hands to look nice. It’s important to me and I feel less myself and attractive when my nails are not painted.
Care staff need to have the confidence because it’s very, very confusing. The law is confusing. And people are not really allowed to be touched without plastic gloves. That’s the only physical touch people get if they’re in a care home because anything else is deemed inappropriate. That’s not okay.
We’re not talking enough about what disability is, either. Only 8% of disabled people in this country are wheelchair users, 3% are visually impaired. It’s a tiny proportion. Around 80% of people who have a disability have a hidden impairment and 83% acquire their disability throughout their lives.
A lot of non-disabled people think that disability has nothing to do with them, but you don’t have to be born disabled to experience a disability.
We need to be looking at access, we need to have more representation in the media, we need to be talking about disability. So it’s not an ‘other’ thing. And we need to be accepting that disabled people have sex and want to be sexual.
Having real-life representation of disabled people in the media is especially important. Unfortunately, notoriously, disabled characters often seem to be the bad guys – they’ve got a hook for a hand or one eye or facial burns. Disabled characters should be written in a well-rounded way so that it just happens that that character also has a disability rather than that being their defining trait.
Becoming informed and listening to disabled people and what they need and not seeing them as automatically asexual because of their disability is something all able-bodied people need to work towards, collectively.
Yes, it should come out in May. It’s taken four years to bring this range out because we wanted to get it right. You can’t create a truly inclusive sex toy range without the accompanying training for carers. There are so many obstacles to overcome.
First of all, most care homes have child locks on their internet which makes it difficult to order the toy in the first place because it will be flagged as an adult website. But say you do order something, how do you open the box if you’re hypermobile or haven’t got the dexterity? Can you ask anyone to help? How do you use the toy? It’s about the whole journey.
So that’s why it was so important that we wrote the training in parallel with the sex toy launch.
There is still so much to do but if I had a choice of a legacy that I was going to leave if would be that induction training for all care staff will one day include training around people’s rights to be sexually active if they chose to be. That’s what I think as a human makes this really important.
To sign up to the disability and sexuality training and learn more about the work Enhance the UK is doing click here.
Photo by Enhance the UK