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Hello!
I have an older brother who is pretty far in the disability spectrum and have been hoping for some advice. He has Hypoplasia of the cerebellum which has rendered him mute and unable to walk with I guess you can call autistic traits… that’s the best way I can describe it, it’s a pretty rare disorder.
Being the second child I’ve always acted as secondary caretaker next to my mom for my brother’s care, and having watched him grow up from an emotional teenage boy and mature to adulthood I’ve wondered about whether he’s missing out on those things that which carers shouldn’t speak of. I know because you guys have been covering this topic speaking out for this growingly public community of disabled individuals taking control over their lives on your website that this topic is at least coming to the forefront which is awesome given the stigmas.
But for those individuals that have a more difficult time communicating or are just farther up in the disability spectrum, do you have any advice? This is an extremely complicated topic I know.
He loves magazines and used to have a big crush on certain actresses, would it be weird getting him x-rated mags? I just recently started broaching this subject with my mother, who’s had a hard time in the past with doctors giving poor or entirely wrong diagnoses on my brother’s symptoms i.e. proclaiming he’s def despite loving music so for such a grey area it seems like a far fetched topic to broach with them. (more often than not doctors will answer inquiries from my mother with “really you know just about better than we do”) So we’re pretty much in the dark, there’s not much input out in the media yet and really it’s sort of a pioneering topic so I figured I’d send a shout out to you guys since you seem to have had some experience with this. I just don’t want to do something that might inadvertently freak him out or get him misguided since I don’t know how I can teach him whats inappropriate or not.
Any input helps, and good job to you guys for what your doing.
Hi there,
Thank you so much for your message and kind words. Firstly, it’s amazing that you are looking out for your brother and all of his needs, rather than just the ones that society deems appropriate! You couldn’t be more ‘spot on’ with what you say, and the way that disability and sex is portrayed needs to change… and quickly!!
In terms of how you can help your brother and what may be deemed appropriate, my response would be that that is entirely up to you as you also need to feel comfortable with what you are assisting with, too. Some relations and friends of people with disabilities do help them to explore their sexuality with x-rated mags or sensual videos, we’ve also had questions regarding masturbation and seeing sex workers. The answer is that there’s no right or wrong way to deal with your brother’s sexual needs, as long as both him and you are comfortable with whatever you decide.
In my opinion though, these magazines sound like they’d be the perfect ‘ice breaker’ for you, your brother and your family. If nothing else, you’re showing your brother that you are there for him and recognise him as a man with desires, and this is quite something when others can just see disability.
Have you seen our ‘Undressing Disability’ video? It can be found here and documents a really powerful story in a lovely way and I think you and your family may benefit from watching it. https://www.youtube.com/watch?v=RwSsPiCEI-0
Anything else I can help with, just shout. I’m always on hand to discuss these things further and in more detail if you’d like to do that. Fingers crossed for a great experience for all of you!
Hey Mik,
I just discovered your videos on youtube. I’m 29, female, been C5 tetraplegic for five years now since my accident, three years married and getting quite frustrated cause I still haven’t been able to reach orgasm after the accident. I love my husband and he loves me, but sex still leaves me just relaxed at most. We’ve tried different positions, I’ve tried “thinking myself to it”, but it won’t
help. I still have some minor feeling down there, but it’s like having sex while in a rubber suit really, so the sensations are nearly nonexistent.
I’ve almost lost hope, but after seeing your videos I’d really like to ask more about the techniques you use. I refuse to believe that I’ll never be able to come again.
Any ideas, suggestions or videos you could suggest?
Looking forward to your answer,
Freya.
Hi Freya,
I suppose this is the unspoken part of spinal injury. We see stuff in the media about trying to get us to walk again, and hear stories of people not coping with their new life with SI but that is always put down to some other reason than sex and sexuality. But we know different eh? However much you miss walking, or dancing or kicking a football it’s sex that really cuts to the core. For most people with SI there is some change in function when it comes to sex, whether it’s dealing with pain or loosing sensation or function or both. This is why I have spent so much of my career in the media highlighting the topic, but usually on with a broader “disabled people have sex, get over it” manner. Then when I hit 30 I felt I was finally in a place to “come out” about how my SI impacted on my sexual function and how I had developed methods to cope with this. During my time in the media I had met a few disabled people who my technique had helped and I thought I should tell the world.
Now Freya, you’ve seen the videos I have online, including the one about “thinking yourself to orgasm”. However it doesn’t seem to be working. Can I ask have you and your partner tried it together? Have you tried getting your partner to help you with the first part of the thinking bit, the creating a head orgasm? I know that most of my advice seems to be aimed at people who are not in relationships, but that is because many of the people who ask for help are in that position. If you have a partner I have found the whole thing is easier. Make it a joint game. Another idea is to really let you fantasies run riot. If you have some sensation but it is “like having sex while in a rubber suit” this is even better. I too experience fluctuating sensation so understand how it feels, but it’s then that the concept of head or tantric sex really helps. So why not chat with your partner and spend a few nights (or full days if you have time and the inclination) experimenting with anything that turns you on? You have to be the centre of it all, and you must guide what happens and how it’s done. Mostly as everything must be to get you there… You’re the important one for the moment.
More than that, don’t panic over this. I know that the awful worry of never getting back that part of your life can actually stop you getting there. It might be that you have lost the old orgasm that you once knew but that is not to say there isn’t a new one, a better one, just waiting to be discovered. I do know that any man deep down loves the idea of being the one who gives the woman he loves back her ability to orgasm, however she gets there, so trust me your husband will be a eager participant in whatever you get up to. But don’t feel less. Less sexy, less sexual, less of a woman. Don’t buy into those non-disabled tropes. We might not work like we used to, but we can work better. Remember that, and see what happens. It might not happen quickly, and it might not be exactly as you expected. But it will.
Lastly I must point out that these “thinking” orgasms aren’t like the old groin led ones. They are weird at first. I also understand they are different for everybody, so if I described mine to you it probably won’t help. Another thing to consider is that while I lost sensation for a while, it slowly came back. 5 years feels like a life time but it isn’t. I’ve had 35 years this April, yet stuff is still returning now. Not that I am giving you a false hope, but in my experience when the doctors say “that’s your lot” about what does and doesn’t work, take it with a pinch of salt. Biology is a weird master, so go with it. I will say that the more I had sex, the more I found my feeling worked. Tough life eh?
So, I hope this helps a bit? Basically try stuff, see what works for you. Who knows it might even be a rubber suit? If it is I know some great designers. One of the leading stars of the rubber world is herself disabled too! But whatever floats your boat, try it. Try it once, twice and keep trying stuff and see what happens. It might not give you back your non-disabled sexuality but I am sure it will give you something new… and better!
Hope this helps? Maybe drop us a line and I’ll see if I can help more if not.
Good luck and have fun!
Mik