In my hometown of Cheltenham lives a very famous lady. She is famous for being amazing. For the sake of argument, we’ll call her “Lisa”.
Lisa is only a few years older than myself and is a Thalidomide victim. She has no limbs, but she has deformed hands at the end of each shoulder, and a pair of feet that turn completely inward. She is completely wheelchair reliant when out and about.
Lisa is also happily married and a mother to several children. When at home she happily waddles around doing everything that she physically can in the way of parenting and housekeeping. She always has a smile on her face and takes everything that life can throw at her.
Then there’s my old school friend, Danny. Starved of oxygen at birth he has severe cerebral palsy. He cannot control his muscles, cannot speak and communicates using a blissboard. He also has one of the finest minds that this country will ever see, and the most beautiful smile in the world.
When Danny was awarded compensation from the NHS he went into business with his younger brother and made a few investments here and there. Last time I spoke to him Cheltenham’s most loveable multi-millionaire was living in a beautiful country mansion with his wife and three dogs.
I used to care for a delightful young man who was completely reliant on hoists and personal care. He was completely paralysed, aside from his left index finger, and he couldn’t sit up, but this did nothing to hide his wicked grin and his wonderful, flirtatious nature. When he died of natural causes in hospital his long-term girlfriend was with him.
All three of these people have beautiful souls and were lucky enough to find partners who could see past the wheelchairs and the communication devices – who could see the person inside the body.
Being disabled does not prevent a person from being sexual, or sexy. Take my son for instance; he’s handsome and personable, is mindful of his appearance and keeps himself fit. He is also a low-functioning autist who is unable to say more than a few words.
Unfortunately his unpredictable meltdowns and violent outbursts mean that any woman would be frightened away regardless of how much she might love him. He will never be a husband and I will never be a grandmother.
However, he is still a sexual being with the same primal needs as every other human on this planet. There is a routine in place for him that allows him to have “man time” twice a day because he still has the same needs as a man without disability.
As an autistic (albeit high functioning) individual with epilepsy I am fortunate to have found somebody who can see beyond my physical and neurological issues. D has had to rescusitate me on numerous occasions, often has to help me bathe, has changed wet bedsheets after a grand mal without complaint (after making sure I’m okay) and has even had to assist me to the toilet.
I scream, throw things and go on the offensive for no reason at all; I’ll wake up with my bottom lip chewed to ribbons, covered in my own urine and I have clumsy down to a fine art. I have spent the best part of a year on epilepsy medications that made me so fat that I broke the sofa and there are many tasks that D has to do for me because I will only hurt myself.
Even at my lowest point though, I still had a libido and my husband still found me desirable. He could see past the meltdowns, the anxiety attacks, the occasional wet bed, the extra weight and the personal care and still find me to be the attractive, sexual woman that he fell for in the first place.
Disability does not negate desirability, sexuality or the ability to have enjoyable sex and produce children. We are not freaks of nature, or unfanciable.
Physical deformities, wheelchairs, walking aids, whatever… we are still like everybody else in that we have the same basic primeval physical desires and needs.
And we are more than capable of reciprocating emotional and physical love and desire.
Never see much written about this subject. Great post! Sexuality and Disability needs to become a more mainstream and comfortable conversation.
It definitely does need to be addressed more often, rather than hidden away like a dirty secret. Invisible disabilities carry the same kinds of restrictions as physical disabilities and so it feels kind of odd to be able to say that I’m lucky – as in I’m only seen as that “pretty, nice lady with the walking stick” and not something worse, provided that I avoid certain triggers (and if the worst happens the stick has already alerted the public to the fact that I have some kind of problem).
Those with physical disabilities don’t deserve to be shunned either. Nobody can help who they were born to be.
Thank you for writing so well on a subject, as mentioned by mydailyminefield, does not get a lot of mainstream attention…and a tip of the hat to your husband…may you both be blessed…be encouraged!
I’ve been dumped in the past because of my epilepsy. The condition affects my mood quite often (because I’ve still not found the right medication) and I’ve been accused of being bipolar, psychotic… you name it and I’ve been called it. I was dating someone when I lived in Birmingham and I suffered a seizure whilst on the back of my boyfriend’s motorbike – causing me to pitch backwards and into the road. His sister is epileptic and yet he decided I must be drunk! Last time I saw my Dad he was showing me his brand new Royal Enfield and I had to explain that I can’t ride pillion any more. He looked really sad; D would happily let me go for a “rideout” with my Dad but I just can’t risk it any more.
I’ve been meaning to send an article in this kind of vein to Epilepsy Action, but I’ve as yet to formulate what it is I’d like to say!
In regards to the letter to Epilepsy Action…I’m thinking it might be a good thing for you just to sit down and let it flow…you might be surprised by what good things are in there…you can always polish it later…you are awesome…so please…be encouraged!
I always respect your willingness and passion for talking on topics that need attention but few people will go there. Keep writing! For all of us.
Well said. Loving the artwork at the start of your post!
This reminds me of one of the programmes from BBC Radio 2 that I heard back in January when I was on rest. There was an interview with a lady who was starting to run a dating service type thing specifically for folks with disabilities. Well, I say “dating service”, I think the lady in question used to run a brothel and was basically going to be doing the same but with more specific clientelle in mind. Which I think in one way is a good thing, but in another way isn’t so good, because sex is only part of a relationship.
If it’s the same article that I was reading about earlier in the week I’d have to say that I agree with it. Many disabled people are in homes or other situations in which they can never hope to find love or even be seen as potentially loveable, but that doesn’t negate the human need and desire for sexual contact. Registered sex workers exist (and are legal) to aid impotent men or any gender with sexual problems/fears/hang-ups.
I do, however, believe that any potential sex worker should be heavily investigated and vetted prior to employment: the disabled are extremely vulnerable and are easy targets for certain types of very sick fetishists.
Exactly my thoughts. The other thought I had, though, is that you might find that the disabled person forms an emotional attachment with the sex worker, and that’s going to be difficult to deal with as the feelings may not be reciprocated in the same way, so the people who are the sex workers also need to have some sort of training to be able to cope with that sort of a situation too.
Thank you for sharing Missus Tribble…
You’re very welcome
Wow, Missus, I have been missing YOU. You: so interesting, varied, and writer of subjects I just don’t see out there much.
I remember reading of the Thalidamide babies and thought they were so decades ago that it wasn’t relevant in my day & age. But it is: those babies are now people, living like me. And married with children!!! Awesomely full life.
And Danny the multi-millionnaire not a victim of anything that happened at birth…. So many people accept disability payments as being all that is possible.
Wow, to overlook disability and all it CAN (not has to) insinuate – we can learn from these individuals.
And then you … You truly are an inspiration for people who can relate. What you say of D changing the bed sheets, resuscitating you – this is EXTREME love (which I hope doesn’t sound offensive), by which I’m just meaning, facing the yikkier moments (like a mother changing foul nappies) and loving, still, and so deeply, still – utterly beautiful: real: precious. You guys have found love where I have still failed to.
I thoroughly admire you.
Never once did I see Danny without a beautiful smile on his face; he was never bitter – just accepted that what happened, happened. I don’t think he was even that worried about compensation, but when he recieved it he used it to help his brother turn his wish for a business into reality and chose carefully when making investments. He thoroughly deserves all the wonderful things that have happened to him since he recieved that money.
As for D, I wish I could convey to him just what he means to me, but there aren’t words.