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.

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

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