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Taking my Local Authority to Tribunal – My Experiences as a Parent of a Deaf Child

By Disability, Lifestyle No Comments

I have previously written a blog about a culture of low expectation and my experiences as a parent with my son Terry (names have been changed) who is profoundly deaf. Within the blog I mentioned that I was fighting for my son to go to a specialist school. Well, the tribunal date has been and gone so I wanted let you know what happened.

Firstly the process took a long time. In our case it took 15 long stressed filled months. Our journey started at Terry’s annual review when we expressed our desire for him to attend a residential school with an oral approach. We were asked if we wanted it to be taken to panel (a group of people from the local authority who make decisions) who would decide if the LA would pay to send him there. When we stated that we did we had to wait until August when we received a letter to state that the LA had decided that it was an unsatisfactory use of public funds and that they had reservations about sending an eight year old to a residential school. Our appeal process formally started in December and it took a few months before we were given the date for the tribunal in June. In the meantime we were not simply waiting for the date but with support from the National Deaf Children’s Society gathering evidence to support our case.

To say I was anxious on the day of the tribunal was an understatement. Myself and my husband as well as representatives from the school I wished my son to attend were present, as were the Special Educational Needs officer, the manager for the Hearing Impairment outreach provision and the local Speech and Language Therapist who represented the Local Authority. The panel was made up of three people who had to decide the fate of my son. I made sure that I put a photograph of Terry on the desk in front of us as I didn’t want him to be a faceless name. The day was incredibly stressful. It required a lot of biting my tongue as I was made to feel that the needs of my son were not central to the case the Local Authority was making. My opinion is that they were more focused on their budget. This is an opinion shared by many other parents. In the end the Local Authority had to concede the case as they were unable to state exactly when they were able to provide Terry with a qualified Teacher of the Deaf. To say we were ecstatic was an understatement.

My husband and I hugged and kissed there and then, it was just an overwhelming sense of relief. Now reflecting upon the tribunal process I am angry. The impact that it had on us as a family was huge. I was so stressed and therefore at times snappy, of course this affected us all. I was not surprised to discover that during a Special Education Needs and Tribunal Survey conducted in 2013 by the forum Kids First that some parents give up because they cannot cope with the stress. I feel that the process actually encourages the school and the local authority to be dishonest.

There are numerous examples I can give where this has happened. One example is the week of the tribunal when producing a timetable the school changed Terry’s and inserted lots of 1:1 support sessions. This has never happened before.

I would like to say to other parents who are going to tribunal to make sure that they seek independent assessments as these are invaluable. Also go and seek advice from charities, there are lots out there who will support you and put you on the right path. Finally if you are able to accept that the process is not about your child as an individual but about costs then this would make it easier for you. This was something that I wasn’t able to do as the impact that this decision would have on my son is literally life changing for him.

Sarah infront of the Eiffel Tower

13 Things to Consider when going on Holiday with a Disability

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I can’t even begin to tell you how many people have asked me whether I’m going on holiday this year. ‘Going anywhere nice?’ ‘Where you off this year?’ ‘You deserve a holiday.’


But I’m not going anywhere, I’m staying put. I will however be having a lovely three week stay in hospital in August, does that count as ‘somewhere nice?’ I think not.

I find booking a holiday exhausting; as a disabled person there are so many things to contemplate before even picking a destination.


  2. Trains – Each railway company has their own way of assisting disabled passengers so it is important to contact them as early as possible to arrange any help you may need. It may also be beneficial to look at a Disabled Person’s Railcard; for £20 a year, the holder and an adult companion are entitled to a third off any fare in the UK.
  3. Flying – Again, plan ahead! Your needs should be met if you contact the airline in advance. Unlimited baggage is usually available for mobility aids.
  4. Did you know you can book accessible cottages and holiday homes? There are plenty of holiday homes that cater specifically for disabled travellers. Google it.
  5. Accessible hotel rooms – Before booking make sure the hotel is kitted out for your needs. There’s no point booking a beautiful hotel if you can’t get your wheelchair into the room; or the shower is over the bath. Ask for a ground floor room if you prefer.
  6. Distance travelling – Will you be able to cope with a long-haul flight? Take this into consideration.
  7. Travel insurance – You’ll need this. You might take ill before your holiday (I hope you don’t) or during it (again, I hope not), but if you do there’s some great companies that are designed to insure disabled people.
  8. Camping – That’s a whole new set of rules. I don’t do it because my high-maintenance bones require a memory-foam mattress and the diva in me likes plug sockets and a private shower.
  9. Is the destination easy to get around? Do your homework; you don’t want to arrive at your destination only to find out that all the places you want to visit are inaccessible, require a lot of walking or something else you simply can’t do.
  10. Are there ramps/lifts?
  11. Is there disabled parking?
  12. Mobility equipment hire – Find out if there is anywhere you could hire equipment if you needed it.
  13. Make sure you have enough medication. There’s nothing worse than being away from home and running out of meds.

If you are going on holiday, take lots of pics, make lovely memories and have fun!

Sarah x

Claire Holland Head of Training

Claire’s Enhance the UK Update

By Business, Disability No Comments

I apologise that it may seem like I have fallen off the face of the earth as it’s been quite some time since I have written my last blog and you may be forgiven for thinking that I have been slacking but the truth is it has been an extremely busy time for Enhance the UK and I simply haven’t had time.

As it stands I am taking a well deserved rest from cleaning on my Sunday morning to share with you all the exciting things that are going on. Funnily enough writing a blog will win hands down over cleaning the bathroom any day of the week!

Well, where to start? We have delivered some great disability and communication training sessions recently at various venues. I am extremely proud of these sessions as I know they are already making such a difference. Staff at Queen Mary’s University reported an increased confidence in communicating with and awareness of barriers that students who have disabilities may face. This can only improve the experience that students have at the university. A newly opened hotel in Colchester are committed to being fully accessible and have realised that this will not happen with physical adjustments alone (although we were able to pick up on a few issues that their architect hadn’t been aware of and help them to put these right) but also with the attitude of staff.

We have helped an organisation to think about ways in which they can make literacy festivals accessible to disabled children and also how they can recruit disabled artists to take part. Being a book worm I am especially excited about this. We have also worked with volunteers and staff of the Big Lunch Extra Eden project to think about ways in which they can make their activities more accessible and am pleased to hear that they are already acting upon all the feedback we have offered. These are just a few of the organisations we have supported recently. Whilst I would like to wave a magic wand and change everyone’s perception of disability I am aware that this simply isn’t going to happen. I take comfort from the fact that we at Enhance the UK are changing perceptions one organisation at a time.

I have had the opportunity to return to a school that we have trained in before and deliver more disability awareness sessions to children between the ages of five and 11. I love these days, although to say they are hard work is an understatement. One little girl made me smile. When asked how I woke up in the morning , she responded sad – bless her. We had a long chat about the fact that I am not sad that I am deaf at all. These kind of conversations with children are essential to change their attitudes towards disabilities.

We launched our new one day introduction to BSL and Communication tactics course at the National Gallery a few weeks ago. All of the staff who attended were keen to practise their new found skills and I am sure will make Deaf members of the public feel very welcome and will be able to communicate with them much easier. The fantastic feedback we received from this can be seen here. This course is something that we are keen to encourage other organisations to send staff on if they are unable to commit to more intense training.

We have also been talking to companies about making their websites accessible to Deaf BSL users and are pleased to say that we have worked with one company to make their website accessible (details will follow once they have launched it) and are talking to several more. This is an area we feel very passionate about and are constantly working on.

We have filmed the first part of our Undressing Disability film to raise awareness of the importance of disabled people not being desexualised and having access to appropriate sexual health advice and sex education. We have more to do before it can be launched but I have every faith that the film is going to be fantastic! The day itself was really special. I have never had the pleasure to spend the day with such a lovely group of people. Many involved had not met each other before and yet the support they gave each other was amazing. Everyone managed to make me feel comfortable stripping off to my underwear and anyone who knows me will know that that is no mean feat. We also have some very exciting projects lined up that will be launched at the same time as the film as part of our Undressing Disability campaign. I literally can’t wait!

We have also been working closely with Scope on their End the Awkward Campaign and looking into developing partnerships with other organisations. All of this work has been conducted at the same time as the day to day running of the charity as well as spending lots of time looking for funding for some exciting projects that we have in the pipeline. All I can say on that matter at the moment is watch this space.

Wow, simply writing this blog has made me realise just how much we have managed to accomplish over the last few months. I have every faith that we will continue to change the perception of disability over the upcoming months as we at Enhance the UK are not the type of people to sit on our laurels. Now I really must get back to cleaning that bathroom, but I promise I won’t leave it as long for the next update!

Sarah Alexander in black and white wearing glasses

An Introduction to Sarah.

By Disability, Lifestyle No Comments

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

The author Holly Williams

Holly Williams on Disability and the Media

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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.


A Culture of Low Expectation – My Experiences as a Parent of a Deaf Child

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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

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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.


Lateef’s Story – Born with Auditory Neuropathy Spectrum Disorder

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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.

The author Liane

Being Diagnosed with Hearing Loss as an Adult

By Disability, Lifestyle, My story One Comment

My name is Liane and I would like to share my story and experiences with you. I was diagnosed with my hearing loss in the Summer of 2014. I first noticed I was having issues with my hearing at work. I was working as a trainee sign language interpreter at the time and discovered I was misinterpreting in some situations, luckily for my clients and myself I did not misinterpret anything of a critical nature!

If I’m honest I was in denial for a while about my hearing loss, but due to my job it was imperative for me to get my hearing checked. It came as no great surprise when I was told I had a mild hearing loss and needed hearing aids. I felt it was a little ironic considering what my day job was, but it also meant I had to make a crucial decision, continue with my training to become a fully qualified interpreter or change career paths. I had to weigh up the cost of my training and if the work I would be able to cope with warranted completing my training. I decided to put training on hold.

I currently work as a Communication Support Worker at a college. As I work within a small class, and sit at the front near the tutor, I manage most of the time. However, if students start talking across each other, again, I am in a situation where I am unable to hear effectively and have to ask the tutor to ask the students to speak one at a time. I also work as a Community Support Worker to Deaf adults within the community, as well as run a part-time business, but I still have not made a decision long term on my career path. This will depend on if my hearing deteriorates or remains the same.

I was given my hearing aids at the end of November 2014. When the audiologist switched them on, she asked if I noticed the difference (we were in a sound proof room with just four people). I said no, but then she switched them off and WOW yes, I noticed the difference!

It was very uncomfortable at first, not only having the tube inside my ear but also having the aid over my ear. For the first couple of weeks my ears were very sore and I was glad to take them out at the end of the day. I was told that it would take me approximately eight weeks to really get used to them. I suffered with bad headaches for the first few weeks as the amplified sounds became too much at times. I would often take my aids out as soon as I got home, after all, having four kids amplified was too much after a day at work! The most irritating sound that took me a while to get used to was my hearing my hair! Sounds bizarre I know, but my hair brushing against my coat was so loud and really took some getting used to!

It has taken time to get used to having hearing aids, not only for me but also for my children. My eldest daughter said to me, please don’t wear your hearing aids when you take me to school, I don’t want people knowing you’re deaf. I found her comment a little upsetting but more so surprising, as through my work and social life I have met and made friends with many deaf people. In fact, one of my best friends is deaf and my children have been around deaf people for many years. Her comment was a bit of a shock.

My children, even though they are deaf aware, have struggled to cope with my hearing loss as I often ask them to repeat things and they get frustrated with me, or vice versa. One common difficulty is in the evening if we are watching TV, the kids quite often talk to one another and I will miss things that have been said in the programme. I have now taken to watching TV with subtitles. We are all slowly getting used to it and are adapting, after all we have to.

IMG-20150505-WA0001 Even with hearing aids, I still struggle in lots of ways. If the environment is noisy I  cannot hear properly and sometimes it all becomes a bit too much and gives me a  headache. I also really find it difficult to listen to voicemail messages, especially  names, as these are not as clear as when speaking to someone face to face or directly  on the phone when you can ask them to repeat something if you haven’t heard it  properly. Although I can still hear on the phone, it has to be in a quiet environment  and hands free in my car is an issue. In fact a funny thing happened just a couple of  weeks ago when using this. I was on my way to my brothers, he rung me and asked  me to get him some Sudacream, however when I arrived at his and handed it to him,  he looked confused and said “What do I want that for?” I said “You asked for it!” he s  said “No I asked for Superglue!!” We all then had a good laugh about it!


One final thing that I am struggling to deal with is how I am seen as a person. I work within the Deaf community and Deaf BSL users are proud to be Deaf as they are part of a community and have their own culture. So when I meet new Deaf people, I sometimes get asked, are you Deaf or hearing? Well, I’m not Deaf in the sense they are, but I’m no longer fully hearing, so I guess to put a “label” on me I am hard of hearing. Also the other thing is filling in forms, quite often they have a question that says, “Are you or do you see yourself as disabled?” Personally, no I don’t but I do struggle in certain situations, so my question would be, “Do you see me as disabled?”

Claire Holland Head of Training

Claire Holland on… ETUK at the Specialist Skills Network

By Business, Disability No Comments

This week I was very pleased to be invited to talk at the Specialist Skills Network which has been set up by the National Gallery and the Museum of London. On the day, a number of professionals from different galleries and museums situated around London came together to share experiences and expertises regarding planning events for children with Special Educational Needs.

The planned activities already being held sounded wonderful and the enthusiasm in the room for ensuring that disabled children and those with additional needs were able to access and experience the exhibitions fully was inspiring. I was there to fully support the scheme but also to add a note of caution as requested by Orlagh from the National Gallery.

As I am sure you are all aware, Enhance the UK is a charity which very much focuses on the perception of disability. Now the perception in the room was very positive as I had expected it to be. Those attending the network are there because they are already engaging with disabled children and young people. I wanted to stress the importance of ensuring that all staff working in a venue who interact with the public having Disability and Communication awareness. To do this I was able to highlight several times I have been unable to fully access museums and other heritage sites, simply because the frontline staff were unaware of what they have to offer. I have lost count the number of times I have been told that a loop system is not available for audio tours to find out at the end that this wasn’t true.

Worse still are the staff who won’t listen to my needs and insist they know better. I have frequently been told to try in the ear headphones as they are very loud, after I have told them I wear a cochlear implant and have no natural hearing and cannot use headphones. When I refuse this opportunity I am then given a look as if to say, ‘oh dear she’s trouble.’ Taking a hearing dog into a museum can also be a stressful experience. Constantly having to repeat that she is an assistance dog and is therefore allowed in becomes tiring after a while. As is the attitude of some staff who have to repeat themselves as you miss what they say when they are not looking at you. All the examples I have given are hearing related simply because these are my experiences, however I know from talking to other people that regardless of the disability there are barriers that need to be overcome.

If I am sounding very negative about staff then I must stress that I don’t mean to be. The majority of staff who work in museums and galleries are very helpful and will do everything they can to ensure that you can fully access the exhibitions. I believe that those staff that I have spoken about already who aren’t helpful are only like this because they do not have an understanding of disability and therefore simply do not know how to react.

Unfortunately negative experiences are likely to put people off attending heritage sites and that is a real shame. I was delighted to see that a key objective of the Specialist Skills Network was how to ensure that disability awareness and the good practices already developed are spread throughout all teams at the museums and galleries. This to me is a very positive step in the right direction.