Tag Archives: deaf

When Leo was born deaf, it was the start of big changes in our lives

Leo was born deaf. In this blog his mother, Keighley, shares how the right support is so important to parents of disabled children to ensure their children get the best start in life.

From the moment Leo’s test came back with no response, support started that day.

It took two to four weeks before Leo was officially diagnosed as being deaf.

Considering I am profoundly deaf, you would think I would have had at least thought about the possibility of my children being born deaf. I had grown up believing my deafness was caused by childhood illness.

Leo was born deaf. From the moment the lady told us that Leo’s new born screening hearing test had come back with no response, support started that day. We were given phone numbers for support lines, direct numbers to them and leaflets explaining the next steps. Along with the reassurance that a Teacher of the Deaf (TOD) would be in touch soon to arrange a home visit. I remember thinking how stupid! He is only four weeks old, why does he need a TOD? How wrong was I?

Three ladies have supported us and helped make Leo the person he is

As well as the TOD support we have a family support worker who’s been with us since Leo was six months old.  The third person is Leo’s speech and language lady therapist who again has been involved since Leo was six months old.

Our TOD is the person we turn to when we have question’s no matter how silly they may seem. She has been there to give recommendations on simple things.  Like toys to help support Leo’s listening skills.  To celebrate all Leo’s achievements which might seem silly to other people, but she knows how important they are to us.

Our family support worker has become part of the family.  In the early days she was at our house weekly.  Supporting Leo with his listening and waiting skills he needed to complete a hearing test.  Without these skills Leo would have had to undergo testing while sedated which carries its own risk. Leo will quite happily sit and undertake testing using all the skills he has learnt.

When Leo was about two years old, his speech and language therapist observed him from a distance, getting ready to step in when she felt was needed.  Working with Leo to get him ready for when he needed his implants.

These three ladies have supported us and helped make Leo the person he is. Without them Leo wouldn’t be the confident chatty little boy he is today.  Of course, there are many more people involved in his care.

Attending that first group was a turning point for me and has changed our life.

This journey has changed me, its broken me at times emotionally and physically.  Without the support of the people mentioned I don’t think I would be where I am today which would have affected Leo and his progress.

As well as teaching Leo important skills, my concerns and worries plus my hopes and dreams for my children are listened to.

When I was nervous to attend a playgroup for deaf children for the first time, I was offered support by someone coming along with me without me having to ask. I know if I didn’t have her there that day I would have not gone.

That first group was a turning point for me and has changed our life. We have met new friends, started learning British Sign Language, and got involved in other support groups.

I have now come to terms with my new identity.  I am Keighley. I’m deaf and proud. My son will grow up never questioning his identity.

If we didn’t have the support, Leo would have started falling behind without a doubt

Writing this, I have been trying to think how we would have coped if we didn’t have the support. I truly believe we wouldn’t be informed and confident to attend meetings and say what needs to be said rather than allow people who don’t know Leo tell us what is best for him.

Support workers have listened and answered the same questions 101 times about Leo’s schooling. Stuff that we have understood at appointments is explained in simpler terms. Different people involved in Leo’s care have been brought together to make sure everyone was on the same page.

I have been given the confidence to remove Leo from the nursery he was attending after I was having doubts about Leo’s needs not being meet.  I’ve had support in attending nursery meetings and help finding a new nursery.

These examples don’t even scratch the surface of the times support has been there to help.  Leo wouldn’t be getting any of the support he gets from both of his nurseries and he would have started falling behind without a doubt.

Leo surprisingly hasn’t fallen behind in any other areas of developments

Today Leo is coming up to a year of having implants.  He wears his processors all day long and can tell us when they are not working.  His speech is developing so fast thanks to his Speech and Language Therapy and all the support he had leading up to and after his implants.

Two smiling young boys and a man playing the snow

He attends two different nurseries, one local to us. He has the best support from his Key Worker, the TOD and Family Support Worker.  They all work together to allow Leo to assess sound. He will start attending school in September which has a hearing-impaired unit. His Education Health Care Plan is being prepared and, thanks to everyone’s hard work, we have plenty of evidence for the support Leo will need in school.

Leo surprisingly hasn’t fallen behind in any other areas of developments which sadly does happen when there is no support.  To think what would happen if we were without our support workers fills me with fear.

I was shocked and horrified when I found out that we are in a minority.  Most families don’t get this support because of cuts to funding!  I can truly say the support we have received has been fantastic.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

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Deafness doesn’t have to be a disability – Abbi

30 under 30 logo

This story is part of 30 Under 30.

 

Abbi was born with a genetic bone disease called osteogenesis imperfecta, also known as ‘OI’ or brittle bones. Following learning BSL, she has set up a YouTube channel where she covers popular music in BSL.

As part of 30 Under 30, she talks about losing her hearing, how she started her YouTube channel and recalls surgery she had to regain her hearing.

Both my mum and I have OI which, aside from making our bones fragile and prone to fracture, has also led us to develop a plethora of related disorders. We both underwent scoliosis fusion surgery as teenagers, we both have arthritis and limited mobility (although my mum walks, I now use a wheelchair), and we both have otosclerosis, a degenerative hearing impairment.

I began wearing hearing aids around the age of eight. Within six years, my hearing had deteriorated to what’s classed as a ‘severe’ loss. I could no longer hear male voices at all, even with powerful hearing aids, and survived life in the hearing community through lipreading, guesswork and a bunch of magnificently patient friends. I was a huge fan of music and played several instruments, even though I had no hearing in the lower frequencies and could only understand lyrics if I saw them written down.

My mum grew up in a world where disguising her disabilities made life easier, so when it came to teenage rebellion, I embraced my disabilities as much as possible. I spent a lot of time learning about sign language, deaf history and the deaf community, and eventually signed up for BSL evening classes at a local school. I even convinced mum to come along, too!

Abbi, a young disabled woman, smiles as she sits in her wheechair

Songs and signing

To tie in with Adele performing at Glastonbury, Abbi has created a BSL cover of one of her most popular songs.

We had a wonderful BSL teacher, Jill Hipson, and after finishing our Level 1, Jill agreed to continue coaching me and a classmate through to Level 2.

As part of our study, Jill introduced us to sign song, which I instantly recognised as the perfect way to preserve the music I loved so much, even as my hearing continued to deteriorate. The first song I recorded – ‘Lucky’ by Britney Spears, of course – was clunky and awkward, but when I uploaded it to YouTube I received a huge amount of support, both from BSL users and from other learners like me. That was a huge source of encouragement to me, and a great way to broaden my understanding of the language.

I’d finally found a way to reconcile both my deaf and hearing worlds which, as a shy, anxious teenager in an increasingly unreliable body, was a massive boost to my confidence. My YouTube channel really took off just as my physical health declined. In hindsight, having such a positive experience of one disability really helped me in the transition to using a wheelchair full-time.

Since ‘Lucky’, I’ve recorded over 50 videos and gained 8,000 YouTube subscribers. I’m not fluent in BSL and I do make mistakes, especially as my hands don’t always work as well as I’d like, but the YouTube community has been incredibly supportive. Not only have I received lots of really helpful constructive criticism, I’ve also had some truly moving messages from both d/Deaf and hearing people all over the world and established genuine friendships. It’s incredible to think how the internet can facilitate such connections which, twenty years ago, would never have been possible.

An alternative way of experiencing the world

In 2011 and 2012, after much deliberation, I decided to undergo two risky but thankfully successful stapedectomy surgeries, which restored most of my hearing. Learning to hear again after ten years was fantastic, and actually fuelled my desire to keep recording sign songs – the more of the song I could hear, the more I wanted to sign!

I recently began to lose my hearing again. Despite having previously worn hearing aids every day for ten years, now that I’ve experienced the luxury of ‘real’ sound, I’ve found adjusting back to ‘hearing aid sound’ difficult. I wear my aids at work, but as soon as I leave the office, they go straight back into their box.

I consider myself incredibly privileged to have experienced both hearing and deafness; facing hearing loss as an adult, I’m taking my time figuring out what that means to me. Deafness doesn’t have to be a disability; for many, it’s simply an alternative way of experiencing the world. I hope my sign songs demonstrate how enriching and expressive that world can be.

Head to Abbi’s YouTube channel to watch more BSL covers of popular songs.

Abbi is sharing her story as part of 30 Under 30. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

Deaf awareness week – we want subtitles for ‘on demand’ and catch-up’ TV and film!

Johanna Taylor is a Senior Campaigner at Action on Hearing Loss, where she works on campaigns to improve access to TV and digital entertainment, protect NHS hearing aid services and to introduce a national hearing screening programme.

Here she explains why subtitling is so important, as part of Deaf Awareness Week. 

Ed Miller Band instead of Ed Miliband. Ayatollahs instead of toddlers. When we see subtitles in the news, the topic is most likely to be live subtitling ‘howlers’ like these – but they’re not so amusing for people with hearing loss who rely on subtitles to follow dialogue and plot.

“I, and others like me, should have the freedom of choice to watch and enjoy programmes in the same way as everyone else, on any device at any time, with subtitles and audio descriptions provided as standard – and we deserve this choice sooner rather than later.” Tania Le Marinel, hearing aid wearer

Johanna has dark hair, wears glasses and is smiling in front of a Action on Hearing Loss bannerAt Action on Hearing Loss subtitling is the issue that people most get in touch with us about, with inaccuracies and delays being a source of massive frustration. But there’s more going on behind the scenes to improve things than these news stories might suggest.
We have long been campaigning to improve the quality of subtitles, and in 2013 there was a breakthrough when Ofcom announced that it would be launching a two year review of the quality of live subtitling. This has led to closer partnerships between broadcasters, production and subtitling companies and increased sharing and use of scripts to reduce delays and improve accuracy, particularly in programmes like the news.

We’ve also seen a reduction in the number of programmes going out with live subtitles that could have been prepared in advance – the BBC recently revealed to us that while 155 pre-recorded programmes were subtitled live in 2013, 2014 saw this figure almost halved.

Broadcasters playing ‘catch up’ with catch up TV

But what happens when someone with hearing loss wants to get up to speed on the soaps using ‘catch up’ TV or enjoy a streamed film?

The answer? They often can’t. A major factor in this is that unlike traditional TV accessibility of Video on Demand (VOD) services are not covered by legislation, meaning there is no obligation on providers to include subtitles.

While the BBC is leading the way and offering subtitles on iPlayer across thousands of devices and platforms, they are the exception. This is unacceptable to viewers with hearing loss who feel like they are receiving a second class service.

A report by the regulator the Authority for Television on Demand (ATVOD), shows that no subtitles can be found on the ITV player, 4oD or Demand 5 when shown on popular television platforms such as Sky, Virgin and BT Vision (YouView), who have a combined UK customer base of over 14 million people. The same report shows that over 96% of Sky’s ‘on demand’ content has no subtitles.

Subtitle it! Whatever we watch, however we watch it.

But there’s an important opportunity on the horizon for the Government to take action to improve access for the UK’s 7.5 million subtitle users.

Back in July 2013 the Department for Culture Media and Sport promised to consider legislation on access services for video on demand three years from then if it is clear that progress is not being made – and in 2016 it’s crunch time. Access services cover audio description for those with sight loss as well as subtitles for those with hearing loss.

In response to this opportunity we’ll be launching a new campaign which will call on Government and broadcasters to “Subtitle it! Whatever we watch, however we watch it”. With the help of our supporters, after the election we’ll be calling on the new Minister responsible for broadcasting to set progress targets. And if no progress has been made by this December – when ATVOD’s next report is due out – we will be strengthening our call for legislation.

Do you rely on subtitles, or do you know someone who does? Please join the Subtitle it! campaign today. Thank you for your support.

Five things I’ve learnt about accessible events

Disabled Access Day takes place tomorrow. It’s a day about getting out there and trying something new! The Science Museum in London was recently named as one of the most accessible tourist attractions in Britain so we asked one of their Special Event Developers, Claire Hazell, to share their advice on how they do it.

Being a Special Events Developer means that my team and I write, develop and present a large programme of events aimed at families during holidays and weekends. We also run a variety of events aimed at making the Science Museum accessible to everyone. During my time I have learnt a lot about museums and their role in accessibility, here are my top five things:

1) There is a big difference between accessible and inclusive

Presenter signs
Presenter signs “Galaxy”. Everyone who attends the show learns a few science related signs.

Our deaf-led SIGNtific programme is a great example of an accessible and inclusive event. The science shows, storytelling sessions and workshops are all presented in British Sign Language and are suitable for both deaf and hearing visitors. They are on during the day and advertised to everyone that comes into the museum. It’s a great way to increase deaf awareness in hearing children and to include deaf children and adults in museum activities.

Our Early Birds early morning Autism event is different. The museum opens early five times a year for families with children on the autistic spectrum. The museum is quieter and there are tailored events and activities for the families. This event is accessible but does not include everyone. This is because it can’t include everyone; the reason we open it up to families early and make the spaces limited is so that the museum is quieter and has less going on. Families asked us to run the event this way and our research has shown us that this is the right environment for their needs.

2) Accessible means different things to different people

Gallery at the Science Museum
(photo credit)

Every visitor that comes to the museum wants to get something different out of their visit. From finding their favourite object, or enjoying a new gallery to just finding a toilet!

Making the museum accessible can mean different things for everyone. It could just mean giving someone a map so they can find their way around but it could also mean coming to an event which has provision for their needs. We try to make the museum accessible for as many people as possible and we are always willing to take suggestions and listen to what our visitors want from us.

3) Don’t make assumptions

Interactive gallery
Launch pad (photo credit Heather Cowper)

While planning for a recent Early Birds session we did some research and found out that sensitivity to loud noises was common among children on the Autistic spectrum. We decided that we should turn off all loud noises and try and keep the museum as quiet as possible. We had planned to turn on one of our large engines and as such included this in our visual story. Families were able to avoid the engine as it was only turned on late in the session. What we found was that lots of families loved seeing and listening to the engine and talking to our engineers about the engine. We assumed that this wouldn’t be the case because of some research we had carried out.

We soon realised that we should never assume and we use this attitude in all our new developments and make sure we look at developments from every angle and assume nothing!

4) You can’t do it alone

Where do you start when trying to run an event when you don’t know much about what the event would need?

You start with people that would know. When we developed our new audio described event we spoke to local councils, charities, specialist organisations, schools, other museums, and of course families themselves. The information from these groups was invaluable and will help the team provide a new event that opens up the museum and its collection to even more people.

5) Taking the first step is hard but the rewards are worth it

Convo 800x392All our events had to start somewhere. A brainstorm, a query from a visitor or an idea you have just before you go to sleep. But turning that first idea into an event can be daunting and sometimes scary.

All our events have amazing teams that run them and supportive managers to coordinate them. It is always an amazing accomplishment to open the door for an event for the first time. I loved seeing the smiles on the faces of the families when they came into the museum for our first Early Birds session, and I still find it amazing to see children communicating with our deaf presenters in sign language. I’ll end with a quote from one of them:

“SIGNtific is fantastic at encouraging children to learn about science without realising they are learning, a brilliant opportunity for deaf and hearing children and their parents to talk and share their experiences after the events. It is always a thrill to be a role model to all children at the events!”

Find out more about accessibility at the Science Museum.

Get involved with Disabled Access Day.

Deaf Girly’s end of awkward

Guest post from Deaf Girly who lives in London. 

When I saw Scope’s End the Awkward campaign featuring the girl with hearing aids in the bar, I was transported back to my twenties when I was new to London and out every night, and single.

Now, dating in your twenties is awkward enough. But for me, deafness added another layer of awkward to the ‘flirting in bar’ scenario. Take the night of four kisses. There I was dancing away when a man started talking to my ear. He was cute. But I had no idea what he was saying. So I took his face and moved it so I could lipread. And he kissed me. Ten minutes later, it happened again, with a different guy. And again. And again. Until I had four guys in one club who all thought I was into them. Problem is, kissing guys before they know your name is not usually the best way to get a date. So I remained single, albeit with a lot of kissing experience.

After a year of this, I signed up to online dating. I chose not to put my deafness on my profile and instead tell guys when I met them. My first date was in a noisy bar with a mumbling man. The effort of trying to hear him over the background noise was exhausting. At 10pm I was asleep, head on the bar, my gin and tonic untouched. The man slunk out, never to be seen again.

This trend continued. I met guys in dark bars where I just nodded and smiled like a nutter. I went climbing with a man who kept yelling instructions at me when I was halfway up the wall – helpful. And, on one occasion, I told a guy I couldn’t hear and he made his excuses and left.

But it wasn’t all bad. One guy took me to a silent movie. Another told me he could sign before showing me the standard (and slightly rude) sign about bulls that everyone says they know.

And then last summer I met a guy at a friend’s summer party. He walked into the kitchen where I was putting the icing on a lemon drizzle cake. I was so distracted by him that I drizzled the floor and my feet, completely missing the cake.

I didn’t tell him about my deafness as he had an easy-to-hear low voice. But then as night fell in the garden, it became harder to hear so I told him. His reaction was wonderful. He asked a few questions and then paid attention to make sure I could hear him – sitting by a candle to light up his face and looking at me at all times

Nearly a year on, the wonderful man continues to be wonderful. He’s attentive without being patronising, helpful without being suffocating and accepts that my deafness is a part of me in a way I wish I could have done when I first learnt I was deaf.

With him there is no awkward. Proof along with Scope’s campaign that it really is possible – and time – to end the awkward.

Find Deaf Girly on Twitter and at deafinitelygirly.com

Ending the awkward in relationships

Top tips for including your deaf friends or colleagues in conversation

Guest post from Vicki Kirwin. Development Manager for Audiology and Health at the National Deaf Children’s Society.

This week (19 – 25 May) is Deaf Awareness Week and it provides us with an extra opportunity to highlight the importance of good communication. Scope’s End The Awkward campaign is also a brilliant platform to raise awareness of the issues many disabled people face on a daily basis.

Thousands of deaf teenagers have told the National Deaf Children’s Society that improving their friends’ understanding of deafness and finding ways to communicate is really important to them.

There are 45,000 deaf children and young people in the UK and many go to a mainstream school where very often they are the only deaf person in that school. This means some of their classmates don’t know how to communicate with deaf children. More than three in four teenagers who have not met a deaf person told us they have no idea how to start a conversation with a deaf child or young person. These communication barriers can make socialising and school life tough for some deaf young people.

A couple of years ago we worked with deaf young people to produce our Look, Smile, Chat Campaign, to help deaf and hearing teenagers communicate with each other. We produced lots of great resources and you can find these at the link below. The best part is that, just as End The Awkward highlights, a small change to the way you communicate with a deaf person can make a really big difference.

Our top tips for helping to include your deaf friends or colleagues in conversation are:

  • Remember to include deaf people in your conversation
  • Make sure the person you are talking to knows what you are talking about
  • Face the person when you are talking to them and stay still so that a deaf person can lip-read you
  • Talk normally, not slowly
  • If you’re in a group, talk one at a time
  • Be creative with your communication. There are lots of ways to chat, you could write it down or text for instance

We all like to communicate and join in conversations, so this week get involved in Deaf Awareness Week and help break down the communication barriers that many deaf people experience every day. You too can End The Awkward.

Visit Look Smile Chat for further information and resources.

Find out more about Ending the awkward at work.