My name is Jennie Williams, I am the director and founder of the user led disability charity, Enhance the UK, and I have degenerative hearing loss. I also have a heart condition called Long QT, which is otherwise known as sudden death syndrome.
For communicating, I wear two hearing aids which I rely on a lot. I am also an extremely good lip reader and sign up to British Sign Language (BSL) Level 3. But really, how many people do you know that sign? Within the hearing world, BSL is not much use to me at all.
People tend to get very confused about what hard of hearing actually means. They tend to associate it with old people, so I often get people saying to me, “Oh yeah, my nan wears a hearing aid, we shout at her. I think she has selective hearing…chuckle chuckle.” I would be a very rich woman if I had a pound for every time I heard that, and yep, I mean ‘heard that’ because I can still hear things.
Sometimes, I can be in a room full of wheelchair users at a conference, for example, and I am the most able bodied person there. I am moving tables and chairs, assisting people to the loo if needed, and then speakers will start up on the stage and all of a sudden I am the most disabled person in the room.
I normally can’t hear speakers clearly, and often in these circumstances, the hearing loop (if they have one) doesn’t work or I can’t understand the BSL interpreter (again if they have one) as they are too fast and BSL is not my first language. So I sit, try really hard to lip read, take a painkiller, as I know the dreaded ‘hearing headache’ will come on, and try my best to keep up. It is hard work trying to lip read and, believe me, I don’t know any hard of hearing people who have ‘selective hearing.’ It depends on someone’s tone, how tired you are, your tinnitus (ringing in your ears) and how you feel that day.
When I was growing up I was very embarrassed about my hearing aids, in fact I hated them, and didn’t wear them most of the time. I struggled through school trying to be cool and hanging out with the boys at the back of the class but missing out altogether what the teacher was saying. I subsequently failed all my mock exams and scraped through my GCSEs, by having very supportive parents who helped me study at home to try and catch up. Looking back now, I can’t honestly say I would have done anything differently. Being part of a group was and is important to me, and I didn’t want to isolate myself and be seen as different.
I never really had an issue meeting boys and making friends. My hearing loss was mild at school and so did not come into play much. I was pretty popular and I was able to take advantage of the fact I had a support teacher, Mrs.Simms, sit with me in most classes, taking notes. Poor Mrs. Simms, we all used her notes and rarely did any of our own work!
I was about 21 when my tinnitus became an issue for me. I was living with my first long-term boyfriend and was upstairs getting ready; I thought someone had come in and put the telly on. I knew Simon wasn’t home so it really scared me. I went down and of course there was no one there, and the telly was not on. I thought I was going mad and was hearing voices in my head. I talked to my mum and dad about it and my dad explained it was most likely tinnitus, and he suggested I go to the tinnitus clinic. I did, and found it really helpful. I cut out certain foods and stopped drinking caffeine and that helped a bit.
Over the years, my hearing has slowly but surely worsened, and my tinnitus has got louder and louder. When I am at work, I am very assertive most of the time – I have to be. I am a campaigner and a disability awareness trainer – that’s what I do. I tell people from the off that I am hard of hearing, and for them to please look at me when they are speaking to me or to keep their hands away from their mouths. I even tell them when I need an eye break. When I am in a social situation however, things can be very difficult and different for me.
I tend to just struggle on a lot of the time: laugh when everyone else is laughing; strain to keep up, and worse still, I apologise. Why is that? I guess I don’t want to embarrass people and make them feel like they are not including me. I often feel like I am being annoying when I keep asking what is being said and, frankly, it becomes boring for me as well.
A lot of the time when you say to someone, “sorry”- I always start with a sorry, how very British of me. “Sorry, but I am deaf, could you turn and face me please?” that person will, more often than not, appear to be somewhat embarrassed, say sorry as well and then shuffle around slightly and try to work it all out in their head. You see, I don’t seem as though I am hard of hearing. I have a hearing voice as I was born hearing, I am a good lip reader, and you can’t see my aids as wear my hair in a bob.
So let’s talk about my favourite subject… Dating!
There can be some real perks of dating someone with a hearing impairment; we can get you into the theatre for free or cheap, same with the train, and a lot of us can lip read conversations that you were never meant to know about from quite a way off and get all the gossip. Winning!
Dating someone with hearing loss can be hard and somewhat awkward at times, for all the social reasons I talked about before, not to mention when you are getting down to things and having a good old snog. The last thing you want is your bloody hearing aids whistling every time the hot man (in my mind he is always hot) puts his fingers through your hair, and then your aids end up flying out of your ears onto the floor, and the dog runs in and eats one of them. That is a true story, and it killed the moment I can tell you. I joke about it but I also worry a lot; the person I am now is not the person I am going to end up being. Trying to be intimate with someone when they are whispering sweet nothings in your ear and not be able to hear a thing they are saying is frustrating.
When I was 28 I was in bed with a guy I really liked and had been seeing for a while. He said something to me once I had taken my aids out and the light was off (massive mistake)! I didn’t hear him and asked him to repeat himself, he shouted at me saying ‘for god sake I am sick of you never hearing me’ and rolled over. I didn’t sleep that night; I had someone lying in bed with me, that was meant to care about me, and was shouting at me. I finished with him the next morning.
Let me tell you about one of my favourite, and also most awkward, dates. I was single, living in London and looking for a boyfriend, so I did what all single Londoners do – I joined a dating site. I started chatting to this guy who looked cute and we had a bit of banter via email. We soon arranged to meet up as I was not one for chatting online for too long. We met on the South Bank and as I walked out the tube, I was greeted by the cute detective that I had been speaking to. He even looked like like he did in his photos. Result!
We went onto one of the boats on the river and had a drink; we chatted about work, as you do; I may or may not have been twisting my hair and trying to make my lips look all pouty and thinking to myself, ‘I really fancy this guy’. So I went to take out my lip gloss and out fell both of my hearing aid batteries. They are really small and so this guy (who I named Gov, as he was a detective and I thought it was funny) said to me, “What on earth do they power?” I then explained my hearing loss and he replied by saying, “why do deaf people do this?” Cut to him waving his hands in the air and scrunching his face up with the tongue in his bottom lip making weird groaning sounds.
I was thinking about throwing my drink in his face but that would have been childish, and a waste of a drink, so I explained about British Sign Language and the culture behind it. I don’t think he got it at all but he was embarrassed and didn’t know what to say, so he offered to take me for a ride on his massive motor bike (not a euphemism) around London and then buy me dinner.
As a newly single 30 something, with now much worse hearing loss, and tinnitus so bad you want to rip your ears off at times, there is a part of me that really worries about meeting someone who is open minded enough to be ok with it. But it is a part of me and, if I do say so myself, you also get a lot of good stuff as part of the package deal.
So back to the slightly more serious stuff. I started the campaign, Undressing Disability a few years ago. I believe that having a disability can be a very isolating experience. As well as the physical barriers, there is still a huge amount of prejudice towards disability amongst the general public. Whilst working in care homes, I am continually disappointed to see very few people who live there have double beds. This instantly makes you feel childlike and takes away the chance of anyone coming in for a kiss and a cuddle… or god forbid, have sex! Disabled people often say to me they have no-one to talk to about sex and it is still so taboo, especially if you are in the care system and rely on someone to help dress you, feed you and wash you. Your life is not always your own and basic human rights, like being able to have a relationship or simply just have sex, are ignored.
If people want to be sexually active they should be. I think there is this massive misconception that sex workers and disability go hand in hand. In some cases they may, but this should be a choice not the only option that people, men mainly, have. Most people I know and talk to want a loving relationship, and want to feel loved and to love. Everyone has the right to have human touch, even if it is not sex as we know it. Any sense of intimacy between two people who care about one another is so important. Even if it’s a one night stand, but it is your choice, that’s also important. Let’s face it, most of us have not slept only with people we ‘love.’ We all want to be found attractive, and sexual relationships are the most natural thing in the world.
We set up the Love Lounge, which is a safe place for disabled people and their partners or family members to write in to our non expert sexperts, Emily Yates and MikScarlet, for advice about anything from relationships to sexual positions. We had so many people writing in, wanting to tell their stories, we decided to make a book so more people could share their ups and downs, funny and tragic tales alike. We hope you enjoy the read and to know that you are not alone.