Where should I start? I’m Sarah, I’m a Scouser living in Northamptonshire with my boyfriend and a broken body.

I have Ehlers-Danlos Syndrome (EDS), Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (PoTS) – basically, I’m in a lot of pain. I dislocate, I’m knackered all the time and my heart races causing blackouts and dizzy/shaky spells – sounds marvellous doesn’t it?

There’s a lot more to it but I’m sure we can discuss that another time.

I heard about Enhance the UK on Twitter, they wanted stories from disabled people about their sex lives and relationships; I was totally up for that. I had a few men from hell that I could write about. I emailed Jenny as soon as I scoped out their website and had a look what they were all about.

I’m all about raising awareness; I work for the HMSA on the social media team and also run local group meetings for people with a hypermobility syndrome in the Northants area. I write fiction and a blog – I’m all about the words.

I’ll be appearing on Enhance’s blog every month so thought I’d share some random facts about me:

 I can’t usually do that serious thing. You know the deep and meaningful conversation? Yep, that and I don’t work well together; I end up making a really bad joke or staring at my phone.

 I have a Masters in English, *bows* thank you, thank you. My dissertation was on the commodification of the disabled body in the Victorian freak show. I was and still am very interested in that topic.

 As from my previous point – I like weird stuff.

 Crime fiction rocks my wheelchair. Crime novels, detective shows, crime thrillers, Criminal Minds, serial killer type things. I guess this leads back to my last two points.

I should probably branch out more.

 I have an unhealthy amount of makeup. I’ll say no more on this.

 Pyjamas are the way forward in life.

 Lists are good.

I’ll end it there, see you next time,

Sarah x

One of my favourite ways to chill out and relax in the evenings is to head online and listen to one of the many podcasts that pepper the internet. Fairly near the top of my list of ‘must catch’ shows is the one produced by the comedy website Cracked. They specialise in picking apart pop culture to find out why films, TV and music are a certain way and how that affects us as the audience. One of their latest episodes involved them turning their critical eye on the way Hollywood portrays certain groups, including the blind and physically disabled. Of course, we all know that characters with impairments are few and far between in the mass media and that there should be a lot more out there but it is quite interesting and enlightening to take a critical look at the characters that are out there.

Back when I was at college, I took A Level Media Studies, a large portion of which was learning about film making and the shorthand that directors use to tell an enjoyable story in a relatively short amount of time. Audiences need to be able to know who and what a character is, almost immediately, just by looking at them. So in the relatively rare cases of a film or series showing someone with, lets say, a visual impairment they are given recognisable indications to make this apparent – a white cane, a guide dog, dark glasses. But the fact is many blind people do not use these. This has lead, according to Cracked, to the bizarre phenomena of people meeting ‘real life’ blind people and thinking they’re ‘faking’ because they don’t ‘look’ blind.

It is a very strange situation to be in when people are questioning the authenticity of someone’s impairment, based on what they know about it from, not the actual person or even a medical expert but from what is shown to us in fiction. And yet it is something we all do, no matter how bright and accepting we are. We are bombarded by orchestrated images every day from the moment we enter the world, it’s impossible to ignore them. I’ve never met someone from Australia but if you ask me to describe a typical Aussie I might say no ­nonsense, friendly, out ­going surfer ­type who likes a beer. The weird thing is I know, as an intelligent person, that the description I gave is a stereotype; an unreal image I’ve built up because of what I’ve seen in the media but I can’t stop it colouring my expectations.

But where it gets really scary is when you start taking a look at the sort of plots and story­lines disabled characters feature in. Broadly, I think you can categorise these into two piles. Firstly, you get the ‘issue’ based programmes, where the disabled character is featured so that the able­ bodied protagonist can learn something about being a better person. A lot of such stories are really well-meaning, setting out to show that just because someone is disabled it doesn’t mean that they’re not a normal person, but a lot of the time because the programme is focused on the issue of ‘disability’ the whole exercise under­mines itself. The able­ bodied protagonist’s prejudices are just a challenge that they have to overcome. Once they’ve done that, grown and become a ‘better person,’ what further purpose does the disabled character serve? They are just an avatar for a challenge in the main story.

Speaking of avatars moves me on to the second problem writers and directors seem to have with disabled characters. The disturbing assumption that if you are disabled (particularly if you acquire your disability) your life is not worth living in that body. Films like Avatar, Million Dollar Baby, Inside I’m Dancing and Simon Birch all seem to believe that disabled people find life so unbearably hard that they would be better off dead (or, in the case of Avatar, an 8 foot tall blue cat/alien). Look, I’m the first to admit living with a physical impairment is an emotional struggle and bloody hard at times but should we really be showing death, and in a lot of cases suicide, as a viable, even noble option. The fact is the majority of disabled people live fulfilling, enjoyable lives.

A survey of people with acquired disabilities showed that after the initial stages of shock and grief their overall level of happiness returns to the same level it was before. So why does Hollywood love showing disability as a problem only answerable by death? Is it because movies and movie stars worship the cult of outward physical perfection? Maybe, but I have another theory. Movies, the best movies, are successful because they tap into our basest feelings and emotions; joy, fear, sadness. Most people have an unconscious fear of their own mortality; the fragility of this bag of flesh, bones and nerves that carries us around every day. Seeing disabled people is a reminder that the human body can stop working properly in a million ways. It makes us ask ‘how would I cope if I lose my sight/speech/use of my legs?’ Most people don’t know the answer to that question. Better to portray disabled people as a removed subsection of society, safe behind a barrier of wheelchairs, white sticks and social oddities than show them as ‘normal’ people. Or better yet, let their story­lines end in an honourable demise that solves all their problems.

But it isn’t all doom and gloom. Now and again, you turn on TV and see something that gives you hope. Case and point, the recent police drama Vera on ITV which featured a physically disabled actress as one of the officers assisting with the murder investigations. The character was shown as a competent member of the team, capable at her job but regularly badgered by the world ­weary detective, just like the rest of the team. Nothing about the role said ‘disability’ apart from the fact the actress in it just happened to have an impairment, showing that disabled characters can be included in a way that is neither patronising, tokenistic or pitying.

My son Terry (names have been changed) is 8 years old. He is profoundly deaf and wears a cochlear implant. He attends a mainstream school with a Hearing Impaired Unit. He is educated for core subjects including English and Maths in his mainstream class with the support of an Educational Communicator.

I have had concerns about my son’s progress for quite some time now. When speaking to his class teacher I was reassured that he was doing well academically and progressing well. This has been a pattern that has been repeated at every parents’ evening since he started school with various teachers. At no point has a teacher looked me in the face and been upfront and transparent with me. Looking back through his school reports I am aware that this is not the case.

He has not progressed academically as would be expected and his attainment is quite a way below the national average. I think that it is disgusting that I can be mislead in this way. My son is not doing well in school and their expectations of him are low. Had I not known a little about this from experience of previously working in a school, I would have taken them on face value. This suggests to me that there are other parents out there who believe their child is doing well when this isn’t true.

It was only when I had an independent assessment done that I realised how far behind Terry actually is. He is approximately three years behind his peers. The attitude that I have had from the school including the Special Educational Needs Co-ordinator and the Teacher of the Deaf is that this is perfectly normal for a deaf child and not to worry. I find this astonishing. Deafness is not a learning difficulty. There is no reason, with the right support and attitude, that my son should not achieve academically. The support from the school has been inconsistent at best. Input from a speech and language therapist and a qualified Teacher of the Deaf has been patchy.

I am now in the process of fighting the Local Authority so that my son can go to a specialist school. It’s a very stressful time and really emotional. All I want for my child is what every parent wants – the right for their child to have a good education and to be supported in an appropriate way so that they can achieve their full potential. Trying to remove my son from mainstream teaching is not something that I ever thought I would do, however whilst this culture of low expectation remains in mainstream provision, I feel that I have no choice. I wholeheartedly support the Close the Gap campaign that has been lead by the National Deaf Children’s Society and urge other parents not to take reports of good progress at face value.

Deciding to have a cochlear implant as an adult has been to date the hardest decision of my life and one I didn’t take lightly. You may think ‘wow it will make you hear again, surely it’s a no brainer’ but it’s exactly this attitude which made it so much more difficult for me.

You see, a huge part of my self identity is my deafness. It took me many years to get to this point but I was and still am proud to be Deaf. My life experiences, character traits and attitudes have been shaped by being Deaf and they are an integral part of who I am. I am part of a Deaf community, I have lots of friends who are Deaf, attend social events for Deaf people and work with Deaf people. We have a rich culture and heritage and a beautiful language – British Sign Language (BSL). At no point in the process did I ever want to be ‘hearing’.

So why go ahead and have a cochlear implant I hear you ask. For me, having been born profoundly deaf in one ear and severely deaf in the other (although I was profoundly deaf in both ears by my early teens) I used a hearing aid and relied upon it especially to help me with lip-reading. It was only when as an adult I lost the residual hearing in my left ear that I could no longer use hearing aids.

Life for me became so much harder. It wasn’t what I was used to and I found it difficult to adapt. I struggled to communicate with my ‘hearing’ friends and most importantly to me I missed the sound of my son’s voice and music. Previously I had existed happily in both worlds, the ‘hearing’ world and the ‘Deaf’ world. I found myself avoiding situations with hearing people as much as possible, instead choosing to spend time with BSL users where I felt comfortable, safe and included and still do.

After some time, though, I realised that I missed the ‘hearing’ world. This environment that I was distancing myself from was one that I had grown up in and was also part of my identity. A cochlear implant had been suggested to me many times before but I had always thought it wasn’t for me. It was only after much soul searching that I agreed to go for an assessment. Throughout this process I learnt about the operation required, the risks involved and spoke to others who had already had cochlear implants. It was a really difficult and emotional journey for me.

Finally, I decided that to me if I could still take the implant off then I was still Deaf and that only I have control over my self identity. I know several people who did and still do disagree with this idea. Cochlear Implants have always been an incredibly emotive subject in the Deaf community. I was petrified that I would lose friends because of my decision. I have been lucky enough that this has not been the case. I fully respect everyone’s opinion on implants and can only say that I believe that I have made the right decision for me. I would never suggest anyone else has one as I believe that it really a personal choice. I went into hospital for the operation with very low expectations.

So how did it work out? Well, I can hear better than I have ever before. I love music again and can cope in most situations. At times I wish I couldn’t hear my son’s voice as he’s now a teenager! I had underestimated the time, effort and perseverance it would take to be able to use my implant effectively. It’s important to stress that I cannot hear like a ‘hearing’ person would. I still struggle with some sounds, find noisy environments really difficult to cope with and still rely on lip-reading too. I don’t listen naturally and it takes concentration. If I am not focusing on listening I often miss things. There’s nothing more satisfying than getting home and taking my implant off, and I definitely can’t cope with putting it on first thing in the morning as I get sensory overload. I get incredibly frustrated with implants being seen as ‘miracles’ and what I see as misleading media stories which are inaccurate and dangerous as they promote unrealistic expectations. I am also aware that I am one of the lucky ones. I know people that have decided to have a cochlear implant (wiping out their natural residual hearing in the process) and have then hated them or they have not been very successful.

My son Lateef was born 12 weeks early weighing just 2 lb 8 ozs. He spent the first two months of his life in the neonatal unit. Lateef passed the initial screening test before we went home. It wasn’t long after being home that I realised that Lateef wasn’t responding to sound. He only reacted to toys with lights and never responded to the door slamming or sounds like that. I was so worried that one night I hammered a saucepan with a spoon right beside his cot. He didn’t respond at all. It was then I knew for certain that there was something not right with his hearing.

It was at this point my fight to get a diagnosis and to the root of the difficulty started. I telephoned the hospital and asked for an Auditory Brainstem Response (ABR) Test. This tests the brain’s response to sound. I had been doing my homework by this point and knew that this was the next test that needed to be done. I was refused this test as Lateef had passed the newborn screening test. I took him to the doctors several times but was simply ignored. A nurse even said to me that she understood that he was my first born and that I was bound to worry more. I was really upset and at my wits end as I simply didn’t know what to do. It wasn’t until I moved house and saw a different doctor that I was finally taken seriously and Lateef was referred for further testing.

Lateef had the ABR test when he was about 12 months old. I was told there and then that he was profoundly deaf. I literally didn’t know what to do with myself. I was at the hospital by myself and devastated. I felt numb. When asking what was next I was simply told a letter would be sent. I was not offered anyone to talk to or given any information. I left the hospital in a daze. I walked in the wrong direction for over an hour before I realised I lived in the opposite direction! When I finally got home I called my mum and that’s when I started to cry. I remember saying that he would never be able to tell me he loved me. I literally didn’t know what to expect or who to turn to. I had so many questions, for example how would he ever communicate? What would his future look like? I had only ever met one deaf person before who always communicated by writing things down.

The journey to a full diagnosis was far from over and incredibly rocky because Lateef’s ear was working ok but his brain wasn’t responding to the sounds. He was eventually referred to see a specialist at Great Ormond Street Hospital and had to undergo lots of different tests often under general anaesthetic. This was a very scary and stressful time for us. Lateef was fitted with hearing aids but hated them and refused to keep them in. In fact the amplified sound was too loud and damaged his cochlear. His behaviour was terrible at this time. He was very aggressive and would throw terrible tantrums. He had no real communication method and was so frustrated. Lateef couldn’t communicate with others at nursery so didn’t make friends and people I knew simply didn’t understand our situation. They would be very sympathetic but this wasn’t what I wanted. I wanted Lateef to be treated normally but with understanding.

It took until Lateef was three and a half for him to be diagnosed with Auditory Neuropathy Spectrum Disorder. As explained before this means that the cochlear was working ok but the hearing nerve itself wasn’t processing the noise correctly. This means that Lateef’s hearing was literally cutting in and out, at times he could hear and other times he couldn’t. To be honest by this point I was simply relieved to have a diagnosis.

It wasn’t until we had a diagnosis that I received any kind of support or advice or input from a Teacher of the Deaf. It was then that I started to learn basic sign language to help Lateef communicate. I decided that Lateef should have a cochlear implant (a surgically implanted electronic device which gives a sense of sound). This was not an easy decision to make but one in which I felt was for the best. Since his implant, Lateef’s language has come along leaps and bounds. In fact one of the first things he said to me was that he loved me, which was really emotional. He loves wearing his implant and has always kept it on. I also noticed a change in his behaviour for the better almost straight away. We didn’t meet any other deaf children until he started school. It was through meeting other parents and also my local deaf children’s society that I have met other parents and people who fully understand and are able to provide me with advice and support. More importantly Lateef has met other children who are deaf like him.

My view of Lateef’s deafness has changed over the years. I am incredibly proud of my son for who he is and wouldn’t change him for the world. His deafness has opened up a whole new life for us that I simply didn’t know existed. I feel very positive about the future and know that will achieve what he wants in life. My advice to parents is that you know your child best. Always trust your instincts regardless of what you are lead to believe. I also recommend anyone that has a child who has been newly diagnosed as deaf to research local groups and support as it really does make such a difference.