Deafblind Awareness Week

I am proud to know that some of my Deafblind friends in the North East and the rest of UK have been moving mountains. Some of my friends have enjoyed great success in their lives. For example, I recently met Jo Milne who has released her biography where she expresses her joy at the time she had her cochlear implant activated.

There are some notable people who are Deafblind and who are known all over the world, these include:

  • Helen Keller, an American activist and author who is famous for being the first Deafblind person to receive a Bachelor of Arts degree;

  • Theresa Poh Lin Chan, who is a Singaporean teacher and writer, and who also starred in a film titled Be With Me directed by Eric Khoo. The film premiered at Cannes Film Festival in 2005.

  • Another person of note is Father Cyril Axelrod, a Deafblind priest, who was one of the first Deaf person who trained to become a Catholic priest. Father Axelrod currently lives in Camden, London where he helps the Deaf and people with Ushers in the area.

Deafblindness is a condition where a person experiences a combination of hearing loss and sight loss. This greatly affects a person’s ability to communicate and gain access to information. Every day activities are also affected and simply crossing the street can be difficult.

There is an accepted definition of Deafblindness, a person can be regarded as Deafblind if their combined sight and hearing loss causes difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss.

There are four main types of Deafblindness. These are:

  • congenital Deafblindness,

  • acquired Deafblindness,

  • born D/deaf and then becoming blind,

  • and born blind and then becoming D/deaf.

It is also significant to remember that no two Deafblind people will be exactly alike, and there are approximately 356,000 Deafblind people in the UK.

Communicating with Deafblind people requires training in the Deafblind manual alphabet and also block and tactile methods of communication. However, here are some simple tips for people to learn how to communicate with a Deafblind person:

  • Touching the top of their shoulder is a common way to attract their attention to you, but always ensure you have their full attention before initiating communication.

  • Always check that you are in a good position to communicate, such as standing in a brightest area of the room.

  • Adapt the conditions to suit the individual, and always avoid crowded places, noisy places and places with a lot of background noise.

  • It is important to be patient and be prepared to repeat yourself, or change the sentence altogether,

  • and of course, speak clearly, slowly and do not shout at all.

Deafblind people are legally protected by the law under the Care Act 2014 and the Equality Act 2010.

The Care Act 2014 came into effect on April 2015, and under section 78 of the Care Act 2014, local authorities are required to act under the guidance of Care and support for deafblind children and adults policy. Local authorities have to make contact with and keep a record of all Deafblind people, to ensure that assessments of need for care and support are carried out. They also need to provide appropriate services for Deafblind people, train one-to-one support workers for Deafblind people, and provide accessible services for Deafblind people.

Joanne Fortune, a Deafblind woman who was diagnosed with Ushers at the age of 12, has served on our Board of Trustees for the last year and was a former Deaf youth leader in Sunderland - where I used to attend the youth club!

Joanne set up UPN, Ushers People North, in the North East. The objective of UPN was to create a group of Deafblind people who could share experiences, offer advice and understanding to others, and to ensure that Deafblind people are not left out. The group met every three months and had Christmas meals together. However, because obtaining regular funding has been such a struggle in Joanne’s battle to keep UPN running, Joanne had to concede defeat and UPN was folded.

Joanne is an active and determined woman and continues to attend Deafblind groups located in York every two months. Now with the new Care Act 2014 coming into effect, I predict a silver lining in the cloud and I hope that the local authority will listen to Joanne (and other Deafblind people of the North East) and provide appropriate services - such as bringing back UPN back to the North East in the near future, so Joanne does not have to travel to York anymore.

People cherish the five senses that they possess in everyday life, treasuring sight and sound especially, so I take my hat off to these Deafblind people who only can see or hear in their dreams, and Ronald Reagan, the 40th President of the United of States for declaring Deafblind Awareness Week in 1985, in recognition of Helen Keller. You can show your support and celebrate Deafblind Awareness Week by becoming a volunteer with any of the registered Deafblind charities such as SENSE, and Deafblind UK, or undergo training to become a Deafblind Communicator Guide.

There are several technological devices that aid Deafblindness such as alerting systems, listening aids, magnifiers, mobility aids and tactile markers. These technological and household aids provide support for Deafblind people to be more independent in their home, and to make the environment more secure and comfortable.

Here’s an interesting fact for you - how often do you see an individual with a cane and automatically assume they’re blind? Well if you see a person with a white cane, then you’re correct, but however if you come across a person with a red and white striped cane, then that person is deafblind.

Why not come along to our Deafblind Awareness Week at 1pm on Thursday 25th June at our office at Deaflink in Newcastle, where two Deafblind people will teach you more about Deafblindness!

Do book your place at the session by contacting Katie at This email address is being protected from spambots. You need JavaScript enabled to view it.

Deaf Awareness Week 2015

It is the time of the week again for another episode of Game of Thrones… Sorry, I meant the week where several organisations get involved to celebrate the culture, heritage and language that are unique to deaf people. Just like how a Walther PPK, the shaken, not stirred Martinis and Aston Martins are exclusive to James Bond.


Deaf Awareness Week is used to promote rights of Deaf people, especially in education, access to information and services and accepting the use of sign languages. Organisations educate about degree of hearing loss, the misconceptions of being deaf, the deaf culture and the challenges that deaf people face on a daily basis.


I have always likened Deaf people to Bruce Wayne and his secret identity - Batman. No one knows Bruce is the Batman, except for his loyal butler, Alfred. Like the secret identity of Bruce Wayne, not many people know about Deaf people’s life. Apart from battling the villains (cue, lack of access) on a daily basis, Deaf people actually have their rich culture, heritage, history and language. They have their own Olympics games for the Deaf, named Deaflympics, and here’s a fact, Deaflympics existed 36 years before the Paralympics was formed! I am enormously looking forward to our next summer Deaflympics at Samsun, Turkey in 2017.


Some of Deaf people have their own special bionic gadgets and some of them have the ability to move their fingers and hands fast. Believe it or not, there is a Guinness record of fingerspelling A to Z in 4.7 seconds, set in 2008 by Thomas McWhinney. That’s blisteringly fast! Some of them can lip-read well, in fact, a few have worked with police as forensic lip-readers. Some talented Deaf people can weave a story or a song in the air with their hands beautifully. Everyone is unique. Unfortunately, the beauty of their sign language is under appreciated.


People in the UK are trying to get BSL acknowledged through a BSL Act. The countries of Zimbabwe, New Zealand and Finland had their Sign Language Act approved by their governments. The main purpose of these Act is to promote the realisation of the linguistic rights of signers. Authorities are required to promote the opportunities of signers to use their own language and receive information in their own language. British Sign Language was recognised by the Government in 2003, but no real progress has been made since then.


The Government introduced the Equality Act in 2010, which legally protects the disabled from being discriminated in the workplace and in wider society. Yet, a majority of Deaf and hard of hearing people are unable to enjoy leisure such as going to the cinema at a time of their choosing. Instead, Deaf and hard of hearing people must check frequently for a subtitled screening that are screened at a specific time, which is usually during the working hours! That amounts to a total of nearly 450,000 people with hearing loss in the North East who are unable to enjoy cinemas fully. In an alternative reality, maybe cinemas would devote a single subtitled screening room so Deaf and hard and hearing people would be able to enjoy the cinemas with freedom. Regrettably, this is one of several problems and barriers that Deaf people face on a daily basis, and do not get me started on the issues concerning employment, education and health for the Deaf people.


However, I must raise an issue in employment and that is Access to Work. After recent extensive revamping to the scheme, they introduced a salary cap for each individuals to receive support. Originally, the purpose of the scheme is to give access to the disabled to establish a suitable working environment, enabling the disabled to do their work properly. For Deaf people, it meant receiving support in the form of a British Sign Language/English Interpreter, enabling them to do their work efficiently. Recently, new instructions states that the employer needs to make reasonable adjustment, collaborating with Access to Work to provide support for the disabled.


Now that the employers must provide additional expenses to provide support, which I believe will witness an all-time high unemployment for the disabled. The Government keeps failing their plans for an inclusive society. What good is the Equality Act 2010 if the Act does not promote an inclusive society for the disabled? Regardless of the Act, the Deaf community is forced to look overseas for protection in the form of the United Nations Convention on the Rights of Persons with Disabilities, which actually mentions sign language seven times because the Equality Act 2010 does not mention sign language at all. It would be a catastrophic tragedy to see British Sign Language end up on the UNESCO’s list of endangered languages.


Yet, in the multi-universe alternative, it would be superb to see the new Government after the elections on Thursday to provide much needed stability for us Deaf people by providing our rights as human beings. It also would be fantastic to see other organisations such as cinemas pledge to support us by providing access for us. A school that actually teaches sign language along with French, German and Spanish, as you are more likely to bump a sign language user than a foreigner in the North East. Another example, there’s a BSL Bill in Scotland that is being discussed as I write this article, and recently, Royal Conservatoire of Scotland introduced BA Performance in British Sign Language and English. Despite all of the problems that our sign language users face, in the North East of England, there is always a silver lining, and that silver lining is Deaflink.


Deaflink provides support for the Deaf, Deafblind, Hard of Hearing and families across the North East. Deaflink provides services and signpost to other services if necessary. Primarily, Deaflink focuses on improving access to employment, education, health, leisure and social for all of our users, to raise awareness of the needs of these excluded groups to statutory and voluntary organisations, and to act as a consultative group offering training support and advocacy.


Since I joined Deaflink just over a month ago, Deaflink have provided access for the Deaf, Deafblind and Hard of Hearing by hosting Question Time at The Council Chamber in Civic Centre, inviting local MPs and having the MPs answer questions from our users regarding the upcoming general election. Our patron, Lord John Shipley took a research undertaken by Deaflink about accessibility in banks to the House of Lords to raise the issue, and banks underwent a change in their policy to improve accessibility in banking for the Deaf, Deafblind and Hard of Hearing people. To me, that is some real progress, and if you would like to find out more about what we do at Deaflink, learn more information about deaf, learn sign language or just pop in to say hi, then please do contact us.


Personally, working for Deaflink is rewarding because I get the opportunity to improve the services to the community that is close to my heart. I would like to share a belief that a very wise man, Mahatma Gandhi, proclaimed, ‘Be the change you want to see in the world.’, and that alone fits with not only my but Deaflink’s philosophy too. It is just exactly like James Bond, working for Her Majesty, to protect the United Kingdom, but unfortunately without the Aston Martins, and the gadgets from Q. I’m not too sure about the shaken, not stirred Martinis, but I’ll settle for a Pisco Sour instead.

Blog - The Effects Of Age Related Hearing Loss On Quality Of Life - Dec 2014

According to the hearing charity ‘Action on Hearing Loss’ (1) over 10 million adults in the UK report some degree of hearing loss. Two in three of which were thought to suffer from age-related hearing loss, (also referred to as presbycusis) a gradual deterioration in hearing ability due to the natural aging process, which can start from as early as a person’s 40s.


What Causes Age Related Hearing Loss


Hearing loss can occur at any age, and can be caused by a vast number of different reasons. In the case of age-related hearing loss (presbycusis) it is caused due to deterioration/damage to the sensory cells that are responsible for capturing the information contained within incoming sound and deliver this information via the hearing nerve to the brain. As the body ages, the specialised sensory cells can simply deteriorate or die and hearing loss occurs. The body is unable to regrow new sensory cells, though stem cell research may provide the answer to regenerating these cells one day.


Health Effects Of Hearing Loss


Problems often begin due to the difficulty in conducting conversation with others, essential to all social interactions. This may mean include having to ask people to keep repeating their words, mis-hearing certain words and therefore answering questions incorrectly, having to concentrate extra hard during a conversation, having to make guesses as to what has been said. All of which can lead to exhaustion after interaction with others and ultimately may make someone with hearing loss decide to avoid participating in the conversation all together. ‘It’s just easier this way.’ Removing oneself from conversation can quickly lead to


  • Social exclusion and reduced interaction with others

  • Feelings of anxiety and worry

  • Depression and adjustment disorder

  • Feelings of shame, humiliation, and inadequacy

  • Loss of confidence

  • Reduced quality of life


Furthermore, we now know, thanks to research by Johns Hopkins and Harvard, that unmanaged hearing loss can have far reaching effects on an individual’s mental health. It is the relationship between reduced auditory stimuli and patterns of reclusiveness that is causing concern, including progression of dementia.


Managing Hearing Loss


It is good practice to have ones hearing tested at every 2-3 years. Some professionals may also recommend that individuals over the age of 65 undergo a hearing test on an annual basis. Regular testing will ensure that any hearing loss or change of hearing loss is picked up relatively soon and suitable management offered. Age-related hearing loss is an irreversible condition. While management options will not cure the underlying hearing loss, they do provide a way to limit the negative effect on ones quality of life. The most common solution offered is hearing aids. Hearing aids are microcomputers that are enclosed in a variety of shapes and styles to fit in or around the wearer’s ear(s). They are available from private companies and on the HNS.


Hearing loss should not be left unmanaged and there is no reason to just ‘live with it’. If you suspect that your hearing is impaired talk to your doctor about getting your hearing checked and about your options.


Joan McKechnie BSc Hons Audiology & Speech Pathology at HearingDirect. For more information on hearing loss you can read Joan’s Blog (found here).


(1) Action On Hearing Loss



December 2014

A book by a Deaf Author recommended by one of our Deaf members.

One of our Deaf members recommended an interesting book called 'Innocents of Oppression: Deaf or Not, You are Not Alone...' wrote by Nick Sturley, a Deaf author.

Oppression'Innocents of Oppression is a powerful and controversial coming of age story. Based upon real events, it delivers a candid insight into life at a boarding school for the Deaf. Viewed from both Deaf and hearing perspectives, it weaves in contemporary Deaf issues and history, making this ground breaking work of fiction an unforgettable read. The story begins in 1977 when Chris, a popular but troubled 13 year old, meets Aaron, an intelligent new boy at a traditional English oral boarding school for Deaf boys. They form a close and intense friendship; one that forces them down a path they would have never dared to predict - a path where they seek to understand themselves, their learning, the strength of their loyalties and their sexuality. All of this within the school s melting pot of adolescent fervour, estranged family life, bullying and abuse. But it is the new teacher from Germany, and the blind hatred of sign language he orchestrates, that leads to a shattering climax which changes the school...... Forever.'

Thinking of buying it? Or give to someone as a gift? You can buy the book online on or via Amazon UK

Blog - October 2012

2012 Deaf Legacy

So, the Olympic and Paralympic games are now well and truly over and what a great spectacle they were. I have to admit to not being that interested in the build-up but once the opening ceremony started, I found that I was absolutely hooked. As well as simply being a fantastic spectacle (and I was gobsmacked that the Queen agreed to 'helicopter in'), I was also really pleased to see that one of the very first 'celebrities' to appear, happened to be Evelyn Glennie, and she was then quickly followed by a signing choir along with a good number of BSL interpreters in evidence. Granted there were justifiable concerns raised that the interpreters kept being cut from various camera angles, all in all, I hadn't anticipated the high visibility of deaf issues and the ceremony certainly seemed to deliver what its director had hoped for in terms of being 'inclusive'.

I learned a lot about deaf sport during the weeks that followed. For example, I hadn't realised that there is no sporting category set aside for deaf competitors (unless they have some other form of pre-categorised disability). Instead, Deaf athletes compete at the Summer and Winter Deaflympics which originally started in 1924, long before the Paralympics came into existence, but there are longer term plans to help deaf athletes become more visible in the next Olympics and Paralympics in Rio.

However, perhaps the major gripe I picked up on, was the fact that deaf sports is so poorly funded. Twitter was awash with comparisons being drawn between the millions of pounds being spent on preparing the 2012 athletes with the paucity of the £42,000 that had been provided by the Government last year for deaf sport. There's a good summary of the issues by Charlie Swinbourne in the Guardian  that's worth reading, and if you do want to find out more about the Deaflympics in time for the next games in Sofia in July 2013, check out the Deaflympics website and see how our GB Team progress on here.

Blog - August 2012

It's a bit of an honour to be asked to become Deaflink's first blogger. I only hope I can live up to their expectations by being witty, interesting, challenging and, importantly as a blogger, not running out of things to blog about!

However, for those occasions when I do run out of things to say (my own life can sometimes be a bit mundane), as a Twitter fanatic, I know that I can always find something on there to give me inspiration. For example, in the past week, there's been news about the Apple corporation planning to develop hearing aids that will link to their products, concerns about the funding for deaf paralympians, and issues raised by NDCS about the safeguarding of deaf children. And in the news, today I've learned that Tony Jacklin has been confirmed as the Patron of English Deaf Golf Association, a Newcastle schoolgirl has been nominated for a Signature award and a Deaf woman from Newcastle (some of you may know Tessa Padden) has been teaching sign language in Iran. It’s a small world; especially on Twitter.

Seriously though, as someone who is trying to hold down a full-time job, whilst coping with increasing hearing loss, I do hope that sharing my view of the world and my experiences will be helpful to others, and also that it's informative. If its not, you need to let me know as I'm also hoping that in the future, we can make this blog an interactive space. I do think that this shouldn't be just a one-way street and that it would be useful to find out what the important things are for you so that Deaflink is aware and can represent your views.

Until next time....

Useful links

 Newcastle City Council Social Care Direct - Adult social care services for deaf, hard of hearing, blind, partially sighted, deafblind people. Click here for more information.

If anyone Deaf or Hard-of-Hearing living in Newcastle is struggling they can arrange a needs assessment by contacting Social Care Direct on 0191 2788377 or by emailing This email address is being protected from spambots. You need JavaScript enabled to view it. .

Once the assessment is complete, equipment can be offered free of charge and is not means tested.  Once equipment has been provided subsequent equipment would need to be self-funded. There is a website to support the identification of equipment and clients should visit

Another Council Services can be found on this link

See our Safeguarding Adults BSL/Subtitled videos for different types of abuse and how to report - Click here

Read our Blogs here

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Deaflink North East is a Company Limited by Guarantee, registered in England and Wales; Company No. 7982375; charity number 1147237.