Deafblind Awareness Week: Are You In the Know?

This week is Deafblind Awareness Week. Every year at the end of June, coinciding with Helen Keller's birthay, 27th June, Deafblind Awareness Week aims to raise awareness of those living with an absence of both sight and hearing. Helen Keller's work made a huge difference to our understanding of life with an absence of both sight and hearing and in raising awareness of the disability. Without her efforts the world today would be very different for those who are deafblind. 

What is Deafblindness? 

According to Deafblind UK deafblindness is the loss of both one's sight and hearing to the point where the person's communication, mobility, and ability to access information are impacted. This includes instances of ‘progressive’ sight and hearing loss. It can also be referred to as ‘dual sensory loss', or ‘dual sensory impairment’. 

Deafblindness exists across a wide-ranging spectrum. Although some people are born deafblind, others may lose one or both of their senses later in life, and to varying degrees. Some people who are deafblind have no useful sight or hearing at all, some may find that the impairment to once sense is greater than to the other, and some may function with comparative ease with the use of hearing aids and other assistive technology. We have aimed to provide advice to people across the entire spectrum of deafblindness with this article. Deafblindness is far more common than most people expect. It is estimated that around 400,000 people in the UK are simultaneously affected by both sight and hearing loss. That is enough to fill Wembley Stadium almost 5 times! It affects everyone differently, and those who are diagnosed as deafblind can sit anywhere on the spectrum. 

What Causes Deafblindness? 

Deafblindness can be caused by any number of things, including health conditions, illnesses and ageing. Some examples are as follows: 

• Age related hearing and sight loss such as macular degeneration, cateracts, glaucoma, etc
• Brain damage, eg. meningitis, encephalitis, stroke, severe head injury
• Problems associated with premature birth
• Infection picked up during pregnancy, such as rubella, toxoplasmosis etc
• Genetic conditions such as CHARGE syndrome or Down Syndrome
• Cerebral Palsy

How does one identify Deafblindness? 

It is important to look out for the early signs of sight or hearing loss as this gives you or your loved one the best chance of getting help. 

Early signs of sight loss may include: 

• Difficulty reading books or papers
• Difficulty recognising people, especially in unexpected situations
• Often thinking you need new glasses
• Being uncomfortable in bright or low light
• Difficulty moving around in unfamiliar places, or places that have changed

Early signs of hearing loss may include: 

• Asking people to repeat themselves or speak up frequently
• Difficulty hearing the TV or radio and having to always turn it up
• Not hearing the doorbell or the phone go off
• Complaining that people are mumbling or not speaking clearly
• Difficulty understanding unfamiliar people
• Avoiding using the telephone

Communication 

There are many ways to communicate with someone who is deafblind. The most important thing to remember is to check with the person what their preferred means of communication is, and whether there is anything that you can do to make this easier for them. They know their disability best and know what they need from you. 

Think about the space that you are in when talking face to face. Is there background noise that will make hearing more difficult? Ensuring that there is no background noise like a TV or a radio on, and that there is no visual distraction or clutter will enable them to more easily concentrate on what you are saying. 

Check with the person what lighting is best for them, as many people with visual impairments are sensitive to lighting, and conversely if it is too dark it can be difficult for a person to lip read if they have enough residual sight to do so. 

Try to use Clear Speech when communicating with someone who is on the deafblind spectrum if they have enough residual sight and hearing that this is appropriate. Clear Speech is about using both sight and sound when communicating with someone and requires a great deal of concentration. For more information on Clear Speech check out the link on the Deafblind UK Website. 

Ensure you get a person’s attention before you join a conversation. They may not realise when you are attempting to join a conversation, so getting someone’s attention by knocking on the table, making a noise or, if they are comfortable with it, tapping their shoulder alerts them to the fact that you wish to talk. Introducing yourself to them before you speak then ensures that they know who it is that is speaking.  

Tactile Sign Language 

One of the methods of communication used by those who are deafblind most commonly is tactile sign language. This is a method of sign language in which the deafblind person places their hand over the signer's to ‘read’ what is being signed. This way they are able to communicate through touch and movement. It is sometimes also called ‘hand over hand’, ‘hands on sign’ or ‘tracking.’ Signs are based on BSL and it includes the deafblind manual alphabet, which is based on the BSL alphabet. The method is used particularly often for children who use BSL as their first language before losing their vision. Often the deafblind manual alphabet will be used rather than tactile signing. In these instances each letter of each word is spelt into the hand of the person who is deaf blind, to ‘read’ what is being said. 

Education and Help 

Every deafblind person is entitled to help from a specifically trained one to one support worker, as per the NHS guidelines. Depending on the individual's situation. This could be a communicator guide; this is a person who works with people who have become deafblind later in life to offer support to the person so that they can live independently and act as an interpreter for them. If the person is a child, it could be an intervenor, who is someone who works with children and or adults who were born deafblind to help them experience and join in the world around them as much as possible. 

Each person is entitled to an individual care plan also. Generic services for deaf or blind people are often not suitable for those who are deafblind, so one's individual care plan is designed to ensure the following: 

• Preserve and make best of any remaining sight or hearing that the person has
• Teach them other communications methods
• Help to maintain as much independence as possible, for example, by recommending you get trained to use a long cane, or guide dog, or providing a communicator guide.
• If you are a parent of a deafblind child they will ensure that their educational needs are met

Identification and early intervention are key in maintaining a child's independence, and preventing delay in their education. Councils in England and Wales must follow guidance on how to provide services for adults who are deafblind. 

What sorts of assistive technology can people who are deafblind use? 

There are many kinds of assistive technology and aids that those who are deafblind can use to help them with in person communication, and with access to resources and information elsewhere. 

• Braille is commonly used by those who have visual impairments or who are blind. Braille displays can be used to make technology like laptops and tablets more accessible, and can be connected to ordinary devices. Braille keyboards and notetakers can also be used in a similar way and can be used by people who have no sight or hearing as reading braille does not rely on any residual sight or hearing.
• Screen reading software can be used if the user does not read braille, or has some useful sight but needs help navigating their computer.  Such software can even be combined with voice control software and used to control a computer entirely boy voice, so that it can be easier for the user to utilise all aspects of it without worrying about whether they are clicking on the right thing.
• Wearable listening devices also help the user to amplify sound, whether that is coming from the TV or a computer, or an individual person that they are speaking to. The microphone can be worn by someone speaking, such as a teacher or a friend, and the sound feeds back directly into the person’s hearing aids allowing them to pick out their voice more clearly over any background noise.
• Simple items such as magnifiers whether those are handheld or ones that use video to magnify the object and cast the image onto a monitor can help people to read things more clearly, such as medication labels, news papers or instructions. 

To find out more about deafblindness, visit the Deafblind UK website. 

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