To Be Held

I’m always the first one naked at a play party. People say that classic thing of ‘Oh I didn’t recognise you with your clothes on’. BDSM has been a way of having confidence in my body post disability, at least it gives myself and others pleasure. 

I was a pervert before I became disabled, that involved it’s own coming out process. I had to figure some things out for myself. I was lucky to have people to have those conversations with. You’re not supposed to want men to hurt you. That’s not supposed to be a good thing, to want men to beat you or tie you up or do things to you. It took me time to understand. That if you negotiate that as a consenting adult, who wants to do that for FUN with another adult; that’s not violence. 

I was the kind of person who did everything at a thousand miles an hour, everything piled one on top of the other, I never stopped. I worked, I was a parent, I was an activist and I had a very full social life. I never paused to even consider if it was too much, I was too busy. A lot of my sense of self was built around what I did. 

Becoming disabled, I had a complete breakdown. I had to stop completely and just let myself recover, to find out where my new edges were. I wasn’t able to do a lot of the things I had before.

The relationship I am in now, I never expected it to last. It’s been nine years now. When we first got together, I thought something that intense couldn’t last, but it did. That constancy, having a person in my life who has just STAYED, who says ‘You know what, I love you for who you are, we’ll find ways to make it work’ and we have! That’s been a positive. I’m polyamorous, my partner is married so it’s not his primary relationship, but I’m in no doubt that I’m important.

I did some experimenting in my teens, then I got into a serious relationship and my partner back then wasn’t kinky at all, so that shut that side of things right down. It wasn’t until that relationship ended and I was in my 30’s that I really started exploring. I describe that period of time as like a second adolescence, I did so much learning about myself and what I wanted. 

I realised I couldn’t go back to being vanilla. The final nail in the coffin was I had a vanilla one night stand and felt so crap afterwards. It was just NOT what I wanted!! So I found a site on the internet and joined up, went ahead and took the plunge. 

I had a D/s relationship when I first came out on the scene that ended quite badly, basically I got dropped like a hot brick. I discovered later he had quite a history of doing that. One of the things that went wrong was we brought in another woman to our relationship. I think he was threatened by how intense the relationship between me and her was. I was really badly affected by that break up, I became quite depressed for a while. I mean I’ve had depression pretty much all my adult life, but it brought on a bout of depression. 

I’ve go Fibromyalgia, osteoarthritis and ongoing depression, but it was the Fibromyalgia that brought me down in a heap. I was working shift work, being a parent, having an active social life, I was active politically, I was active in my union. I was doing everything and not sleeping as much as I should have done. I was aware there was something not right, but didn’t know what it was. I tried to push through, I was worried I would lose lots of things I valued if I stopped. That if I stopped I might not start again. I pushed until all my resources were gone. 

I remember coming home from work the day I decided I had to go off sick, I was working a night shift and I told my manager I had to go home. I remember coming home and wondering if I would ever go back to that job again, I didn’t. My job was a really important thing to me. Work was an important part of my identity. I was really in a bad place.

I have gradually put things back on track, my Fibro has improved since a change in medication some years ago. Coming to terms with not being able to do all the things is tied up with all sorts of feelings. Having support from friends, family, my partner has helped. 

My mum is relentlessly positive, what ever happens she will look on the bright side, but sometimes you have to look at the shit. Sometimes it doesn’t help to say ‘the sun will come out, everything is going to be ok’. You have to be able to say ‘This is not a good situation, this is not where I want to be and where do I go from here?’ It’s been a journey since I became ill. Ive found ways to continue to have a life, because when I first got ill I didn’t have a life, I was just existing. 

We went to ‘night of the cane’ last night. There’s a caning competition where people give ‘six of the best’ and it’s judged. It’s a nice atmosphere, it’s also a play event. When I was first out on the scene I had to get my head around playing in public. It can make you feel quite exposed, but I managed to tap into my exhibitionist streak. In the right situation, I can really enjoy myself. Things about what my body can do help me to feel better. Sometimes feel my body has let me down because of illness, there are still things my body does which give me pleasure. Myself and my partner have a strong exhibitionist streak so we can have a lot of fun, being surrounded by others, you can spark off the energy.

I can’t got to the really late events I used to enjoy, it will make me ill if I do it. We used to go to parties all the time. You have to pick and choose what you can do and what you can’t. My partner is still able to do it, sometimes I feel jealous. I find ways where I can do ‘enough’ not as much as i used to but ‘enough’.

I’m a social person, I need contact with others, so I do a lot more online and on the phone. I’m lucky, I have good friends who I value and who value me. Sometimes I feel resentful, but most of the time because of the quality of support I have, I’m alright. I can’t do what I used to do but I can do enough to feel fulfilled. I still work (that’s hard), I’m still a parent, I still have relationships. 

I’ve been involved with ‘Not Dead Yet’: the campaign against assisted suicide. Yes, disabled people have access needs which take resources from society, but we still have a right to live! If you’re NOT disabled and you want to die, that is seen as a psychiatric problem and treated. If you’re disabled, wanting to die is instead seen as understandable and normal. The risk of coercion is massive.

I’m a good crip who manages to work, who manages to ‘contribute’. The cuts and changes to benefits are severe. I get PIP, but the process of applying for that is horrendous. I am articulate, I’m reasonably well educated, but I didn’t apply for years because I was so put off by the process. Imagine how it is for those with less resources. There were years when I was eligible and didn’t apply because I was put off. I think that’s deliberate. The money I get makes a difference in the kind of life I can live, being able to afford a ready meal when I’m too tired to cook or a taxi when I can’t cope with public transport. It makes a huge difference.

Access isn’t always about stairs. It’s hard to find venues for kink events, people with venues are already very twitchy about licensing. I don’t want to say the kink scene is just amazing, because the kink scene is part of society and we have the same problems. I do feel it’s relatively inclusive. I see people with disability out playing. There are problems with attitudes towards women. Inclusion should just be what we do.

Disabled peoples sexuality, myself as a middle aged women, we’re seen as not being sexual beings. Many disabled people do have a sexuality and being able to express that is life affirming. The idea that we have to be ‘good crips’ and be grateful for what’s given to us, I try to challenge that by refusing to bow down. To get out there and have sex and do BDSM. I’ve never been the kind of person who just does what other people expect me to, but not everybody can do that.

I’m a very sexual person, I recognise that not everybody is, but certainly male partners in the past the have found my sex drive intimidating. If your only idea of sex is fucking, then probably that is going to be intimidating but if you have a much wider view of things you can do, it doesn’t have to be intimidating.

My mum knows I’m kinky and she hates it, but I’m out to her because of practical things. Its normal in my family to talk about bodies and to see each other naked. I’ve tried to parent in a similar way, to be quite open. Recently I’ve come out to my child about being kinky. They don’t need to know the details, but they are friends with my kinky friends, it’s a good relationship. Parenting and kink, my awareness around consent is a thing I can bring to parenting. I dislike a lot of mainstream parenting as it seems children are often treated as their parents possession. So ideas from the BDSM scene about consent and bodily autonomy have been really valuable to bring to the discussion. 

If you’re disabled you aren’t supposed to like your body are you? I get cross with my body sometimes, but I also like it. Having some one else who also likes my body and having that as a constant across a period of my life in which I’ve become disabled, in which I’ve become accustomed to my impairments, that has been important. My body is mine, but its also something that can be shared, that brings pleasure. 

Stories of Resistance

Funding raised by the National Lottery and awarded by the Heritage Lottery Fund

Resilient & Resisting

This project is a collaboration between groups and individuals, with artist/activist Jet Moon.

Produced under the wing of Arcola Participation and with support from the Heritage Lottery Fund.