Sex, relationships, love, heartache, anxiety, homosexuality, hook-ups and break-ups – it’s all here in this presentation of the European Network On Independent Living’s April seminar on sex and disability.
The event, hosted by the Council of Europe’s Strasbourg Youth Centre, brought together 22 activists from across Europe, for free, frank and fearless exchanges on all aspects of their most intimate experiences.
Video
The Essential
Review: Study session on sexuality, disability and relationships – breaking taboos
Full Video Transcript
Emily
So I’ve had a few situations where
I have gone into a bar, with or without my friends.
I’ve just wanted a quick drink
And a guy will come up to me and I’ll think
Oh wow he’s interested and get ready for a really cool conversation.
And quite often, before that person even says hello to me,
They’ll ask me whether or not I can have sex
Joy
She helps me with everything and I can help her with everything
We just really connect. I have never had that before with anyone.
To get that at my age, I think, is really rare.
To have that and feel like you have found someone who is perfect for you
Is just the most amazing feeling I’ve ever had.
Dilyana
Disabled people have absolutely the same desires, ambitions, fears like everybody else
And sex, for them, has the same importance as for non-disabled people
Rados
And what’s even worse than people’s opinions and perceptions
That it would be more normal that a disabled person dates another disabled person.
There’s time they are quite surprised when they look at my girlfriend and they say nothing there’s nothing wrong with her. They expected that she would be disabled for some reason
It fits the normal picture that society has
Zsuzsanna
My disability made me a bit shy especially because I grew up in a society which didn’t accept me as I was, or they didn’t want to see my abilities, just my disability – let’s say that.
Miro
The situation is that disabled people are continuously provided with messages of
You are a burden. You are not valued. You are affecting the productivity of society.
You are a strain on resources etc. You should be segregated in various institutions etc.
Alice
When people don’t see you as an equal, you are isolated.
If you are isolated you can commit suicide.
Araratovic
Until the age of 18 or 20, I thought that no girl would be interested in me and that I am ugly and not attractive and people would not like to be around me.
Iro
I will want to have children but I think that I will have cats and dogs and I will be all alone.
Naomi
I think it’s more a taboo than having sex and being disabled already is. It’s also more a taboo to be a homosexual, it sounds really terrible when I say but it’s a fact.
We heard it a lot. I was talking about that I am in a relationship with Joy and I was disabled and a lot of people here were like “oh you’re in a relationship”.
It was like they were thinking “oh it’s a taboo we can’t talk about it. It’s weird to have both”. And I don’t think it’s weird to have both because I am just a person and we are just human and I’m just in love with Joy.
Emily
So I was with my ex- boyfriend for a good amount of time over 3 years. He was totally upper bodied, we had an absolutely brilliant relationship, we lived together and we went travelling for a month.
And everything was going great, he got time off work, it really was going to be our holiday of the year.
Where we really spend all this time together and create a connection that I think you lose through the 9-5 everyday, boring stuff.
So it was all going really really well and then we both started arguing a little bit and became quite distant from each other and we went out for a meal one night and I just kind of said what’s wrong, tell me what’s going on.
You can talk to me about anything. And he must have been bottling it up for quite a few days, he just said that he felt more like my carer than my boyfriend.
That he realised through the inaccessibility of this place how disabled I was and that he didn’t find me sexually attractive anymore, didn’t want to be intimate with me anymore and that he sees me as a really strong woman in the UK but changed his perceptions and saw me as really weak whilst we were out there.
It really broke my heart, it really broke my heart. And I think possibly through my naivety as a disabled woman I’ve always been very conscious about being able to get into a relationships.
I’ve always known that going to a club and dancing isn’t going to do me any favours because let’s face it, if you want a one night stand, the likelihood is that you aren’t going to choose a girl in a wheelchair because it’s just not as practical and easy.
So I’ve always known that actually finding a relationship might be quite difficult for me but I kind of just thought that we were together, we were solid and that was it.
So it really hit me hard because I was so comfortable in the relationship and we shared everything.
But yeah it definitely showed my disability to me in a different light and I feel like I’ve regressed a few years and I’ve got to build up my sexual and social confidence again, but I know that I will.
Joy
What Emily said, I can’t, I can’t.
It’s just heart-breaking to hear that after 3 years, you just f@#k someone over like that. Knowing someone like that and then saying yeah f@#k you, I’m leaving. It’s the cruellest thing I’ve ever heard.
Emily
When I was 14 or 15 I remember laying in bed at night worrying that I was never going to have a boyfriend, worrying that I was never going to have sex.
Thinking that all my friends were doing it and I wasn’t.
I think that I’ve always just managed to be true to myself and I’ve had to exercise patience
And by almost having that time and grieving space to work on myself and what I want, I now have really high expectations of a relationship because I know that I’m going to be alright without one .
And that’s a really flippen cool position to be in.
Workshop
When we talk about physical attraction, the body expression is very important and people regularly have used it to judge us so just stick with it, I don’t know, it’s not nice but you have to.
Emily
So this is the way, I guess, that I see my disability and my wheelchair
And we like to call it the tosser filter.
So I’m going to a club, having a bit of a dance I buy a drink.
I know realistically, don’t get me wrong it does happen, but I know in the back of my head that I’m probably not going to pull that night.
I realistically know that it probably won’t happen
because lets be honest, people who go to clubs to pull they just want a shag, don’t they.
And let’s be honest it’s not the easiest thing to do in the world to shag a disabled person, it’s just not the easiest thing.
So either you don’t pull at all or you get tossers coming up to you that before they even say hi, they will ask whether you can have sex.
So I know that that club environment isn’t anything for me. However I know that I could come to a conference and I’ll be hitting everything answer on that head and people will be thinking, “Oh wow she knows her stuff, she’s quite interesting”.
And that’s how it is, to me it’s not about disability being asexual or nonsexual or unattractive.
It’s about our external views of disability and our aesthetic view of disability, still needs to change in society and yes right now it isn’t seen that sexual by society.
However if people take the time to get to know the person away from the disability or even better they are able to say yes she’s disabled but she’s also really sexy, then that’s how it goes.
Don’t get me wrong, I’d love us to get to a point where I can go into a club and men would be flocking me.
We aren’t there yet, we are not there yet but we are at a point where people are realising that this sexualisation in society isn’t all that is cracked up to be.
So they are willing to look behind that disability that society says not very desirable, and be able to look at that person and think wow they’re interesting, they’ve got a story to tell, we really connect.
And that’s where sex and sexual relations can flourish from there.
I think everybody wants to feel attractive and feel desired, and of course I want to feel that, of course I want to go into a room and have people looking at me, of course, because that’s what builds your confidence and what makes you feel good about yourself.
Do I want to settle down and get married and have children? No. Would I give my career up for a relationship? Quite possibly not if I’m perfectly honest because I’m 24 years old and I’ve got another 10 years of my life before I need to start worrying about that.
So to be totally honest with myself, I’m really comfortable where I’m at, I’m really driven to be the best person that I can be and to be really comfortable and confident with myself before I let anybody else in.
But do I want to have fun and do I want to get to know people and do I want to make connections? Of course I do.
Mara
The people who have gathered here they want to do something, they want to do something more than they are doing in their daily life.
I think each of them has their own story which is unique, complex, sometimes thankful and sometimes also joyful because it ends well in a sense.
So the fact that they are here, it’s not only to do a self- help group in a sense, it’s not what we are doing here, what we are doing here is seeing from the point of view of active people and people who have been through things how things can get better.
If young activists working with young disabled people think that sexuality and relationship is something that is important for disabled people inclusion, we are happy to host it
And the way it is framed is in the framework of the human rights which is why it is important for us.
We also think that the study session is an opportunity for youth participation which is one of our values, so if disabled young people come together to discuss something important for them and they plan to do something about it afterwards, this is the right place to host it.
Dilyana
This is the third annual study session in cooperation with the Council of Europe and we chose that particular topic because people want to speak about that, and that’s great.
We do it because during the first two study sessions, participants said numerous times that they want to speak about sex.
And that’s why we do it because it is part of who we are.
It is a human right and that’s what we work on
Sex is a sort of a taboo topic and private for non-disabled people so imagine what it is like for disabled people.
It’s kind of forbidden and a very underestimated topic in public discourse and it definitely needs to be talked about.
Miro
The key themes for this study session are around our understanding of what does disability mean, because we can’t take it for granted that it is a universal construct.
It’s interpreted in many different ways.
So we want to be clear what we actually mean by disability and impairment.
Then we look at issues around the position of disabled people within society and thinking about some of those issues which we discussed previously the politicisation of disabled people and so forth.
And then we started to drill down further into issues of sexuality, access to relationship and actually how that affects the development of our identities.
So you can say on three levels, the individual’s experience of the issues that we are looking at, the collective group and the communities that we exist withinand we want to be a part of and then the wider societal framework that exists which focuses and impacts on the development of everyone’s identity as part of society.
These are issues that are dismissed continuously by the dominant ideologies that we live in.
So we actually perceive people as not being valued members of our families in terms of having leadership roles in our families.
On the whole we don’t see them as sexualised beings, we see them as asexual or people with whom we would not want to have a relationship with.
So for many people coming to this environment, to this study session from different backgrounds, from different impairment groups, different social classes, different countries etc different experiences but what you are seeing is a discussion which actually allows people to bring about their personal experiences with a topic.
Rados
When I dated a girl without disability, sometimes people perceive it or they act like I won the gold medal at the Olympics, which really reveals their secret opinion that disabled person don’t deserve a non-disabled person.
Iro
But I think that my disability has an impact on my mind. Only on my mind not in other fashions.
And this has affected me … because there are some days that I am depressed and I’m sad and some other days when I’m happy and I’m good.
Araratovic
Some people are simply a bit afraid about the truth. Especially when talking about girls that I’ve been dating.
For example I can tell about one girl that I dated and from the start I told her and she said she was ok with it, she said “all is ok there’s no problem.”
But then she text me after the meeting that she was terrified and really perplexed and she could keep the tension inside and not show it. So yeah I’ve been having a problem with this.
Naomi
We are all sexual beings, if you are disabled it doesn’t mean that you don’t like sex or whatever.
So I think it is really important to break that taboo around it.
Zsuzsanna
It was also very important for me, I have never told him before, how will his family react to me if they see me.
I was afraid of that, what his mother will say “oh look at that girl she can’t even walk. What are you doing with my son.”
He has a bigger family than me, so I was really afraid of their reaction.
What will they say, whether they can accept it or not.
What are his feelings about it, if he is comfortable with me to go out on the street and show that here is the girl that I chose.
Emily
There’s a beautiful familiarity that comes with dating another disabled person.
And there are brilliant things such as, you will purposely and obviously book somewhere that is accessible for your days out.
You won’t even need to think about “will this be appropriate for us”, because you will never ever dream of going somewhere that isn’t.
You’re fully aware of each other’s fatigue, of each other’s capabilities and limitations and a lot of things can go unsaid because you don’t need to explain yourself all the time.
I’ve had great sex with disabled people, it’s not always been penetrative sex.
But it’s always been really sensual and sexual and I’ve learnt a lot about my body through dating other disabled people.
And actually, sometimes it’s the better sex because they’re not a one bang thank you man.
It’s all about the rest of it. It’s about your body and exploring each other and that’s really cool.
However being with an abled body partner is also really interesting because for me, it really challenges me.
I can get quite complacent sometimes when something is quite easy. I need to be constantly challenged to do things.
I need to be really stimulated emotionally and physically as well as sexually.
And I feel that an abled bodied partner does that automatically because they are already, if you like, physically a level up from you.
So you constantly try to catch up and try to experience new things with that person because you want to have common interesting and you want to have familiarity.
So I think both have very good points and I don’t think it is up for us to encourage or discourage a relationship with a disabled person or with a non-disables person because each one works beautifully in different ways.
Araratovic
Sometimes I get to know girls on social media as well, so I always feel this need inside to tell them about it before the meeting.
Because I feel tense like I’m hiding something, that I’m not myself and I’m not appearing like I am.
Because in photos on Facebook or other sites I don’t have my hands open and showing, I don’t have it.
Maybe in the future I will be confident enough to do it.
So girls sometimes get the impression that oh this is a good looking guy, he’s well, he’s tall – let’s talk to him.
So we talk and talk and talk and it’s always on my mind that she doesn’t know it.
And maybe if she knows she would be disappointed.
I don’t know this girl, I don’t know how she would react -let’s not have hopes with her is what I’m telling myself, that you don’t know what can happen.
Sometimes it happens that they know it and they turn away, but a lot of times I have found myself personalising because some people turn away from me for other reasons.
For example for one of my characters.
But I used to personalise it as happening because of that and that and that and tell me if it’s because of this or that.
Recently I’m working on this. To understand that I have some false beliefs about it.
And I think that everybody is concentrated on it and when they turn around from me it was only for that reason and I was victimising.
Iro
It’s easier to have a relationship with me
It’s more difficult to marry me because it makes me think that my disability may get worse and worse and someday I won’t feel or care at all.
Joy
Random people would tell me you’re doing a good job in taking care of your girlfriend.
And it’s the most uncomfortable feeling when they tell me these things.
Because I don’t think it is necessary to compliment someone when you’re taking care of your girlfriend, it should be normal.
Zsuzsanna
I don’t think he sees me as someone who needs protection or needs to be saved.
Emily
But I do think there is a particular awkwardness around disability and sex.
And I do think that people do worry about being offensive or patronising and often they don’t have the conversation at all.
First of all, that is very worrying.
But secondly, the flip side and the side that I’ve experienced with guys talking to me in a bar.
Is that they want to have the conversation and they are interested and intrigued by the disability.
But almost they get too intrigued that that sensitive barrier that everyone should have when chatting to someone new, kind of fades away and is broken.
And those two flip sides are equally as damaging I think.
So what we need to learn to do is to educate ourselves on terms of disability and sex.
So it is not such a taboo and so that those 2 things can be spoken about in a really sensitive and kind manner.
Without any kind of previous excitement or worry about being offensive.
Workshop
What are you doing every day? She can’t move.
What?
What are you doing every day? She can’t move.
We do whatever we want to do.
Does she speak at least?
Miro
There is an argument that actually the whole conversation about disability goes back to the point of eugenics.
And actually you can see throughout the history of looking at disability, time and time again, the question has been, should disabled people exist and when they do exist should they be given their rights.
We’ve seen that on the left, we’ve seen that on the right, we’ve seen that across the world.
Emily
I think we can look at disability and sexuality quite scientifically.
And we can look at the situation of it’s the survival of the fittest.
Looking at me, I think it would be quite fair to say that someone wouldn’t look at me and think she’s going to be the mother of my child, which is absolutely fair enough.
But I do think there are huge issues with societal views.
I think a huge problem is that the media, celebrities and these type of people, they have put a norm into society.
They have put a norm of pale white straight people.
And the problem is that disability doesn’t feature at all.
It never ever features.
So when something is so out of the norm and so societally wrong, it is very difficult to find it attractive. That’s what we need to change.
We need to have further representation.
People with disability need to be on the TV, they need to be writing stuff, they need to be shouting from the rooftops.
And that doesn’t mean in an aggressive activist way, it means that we need to fight for equal rights.
But we need to do that through education and understanding.
Miro
We are politicising it because disability is a political construct.
It is an issue that has been created and if you look at the history of disability, it is one that sits within economic and political framework.
It has been created because society disabled individuals.
Individuals with health conditions, physical impairments, learning disabilities and mental health conditions etc
They are not disabled by their impairments but they are disabled by the way society is constructed.
Dilyana
When you have to summarise something big, it is a bit tricky.
But our message is quite simple.
Disabled people have the same rights as non-disabled people and we don’t want to avoid difficult topics, like sex.
Rados
I guess the most important message is disability is not the only identity which matters when you are creating your sexual personal preferences with whom you are going to engage in a relationship.
But the identity is constructed from many other things.
Emily
This conference is run by the European Network of Independent Living so I think first of all and the most vital thing that we are focusing on is self-acceptance.
Because no amount of great sexuality or love or really satisfying and fulfilling relationships can come without self-acceptance.
And you know, unfortunately, it is really surprising that many many disabled people haven’t been given that opportunity yet to fully accept themselves.
So that’s why it is so brilliant to get a full room of people with different disabilities and different needs, and get us all saying “yeah we’re great.
That is the first thing and most important thing for me.
And then from there we can step up and say yeah we are really sexy, yeah we want this and yeah we are going to have the confidence to say I want this and this is what I have a right to.
And that’s when you get really brilliant sex and loving relationships and all the stuff we all want, that we all desire regardless of who we are, how old we are, what abilities we have and what pushes our buttons.
ends