Navigating Deafblindness: Understanding, Support, and Empowerment for Individuals with Combined Hearing and Vision Loss

Deaf blindness is the condition of little or no hearing and sight.^{(1, 2)} It is the condition in which different degrees of vision loss and auditory (hearing) loss occur within each individual.⁽³⁾ Helen Keller was an example of a deafblind person.⁽⁴⁾ Deafblindness is also known as dual sensory loss or multi-sensory loss and such a condition can occur either from birth or later in life. It affects an individual’s ability to communicate, access information, and get around well with others.

Usually, a deafblind individual won’t be completely deaf and blind but both senses will be reduced enough that could significantly impact their everyday life activities.

The two types of deafblindness are congenital and acquired deafblindness.^{(5, 6)}

Congenital deafblindness is when someone is born with sight and hearing impairment, or it becomes apparent within the first two years of their lives. Infections during pregnancy, premature birth, birth trauma, and rare genetic conditions might lead to congenital deafblindness.

Acquired deafblindness refers to the condition when you develop hearing and sight loss later in life. Anyone can become deafblind at any point in time through accident, illness, or aging.

Sometimes one can be born with either a hearing or a vision impairment only, but as they age their other senses also begin to worsen.

Some common signs of hearing loss in the case of deafblindness include:

• Not hearing someone when they speak to you from behind.
• You need to turn up the volume on the radio or television.
• Delay in responding to people with whom you are conversing.

Some common signs of vision loss in the case of deafblindness include:

• Unable to see clearly in low or dim light.
• Not recognizing others, particularly in unexpected situations.
• Unable to identify or find items easily.
• Having to hold the newspaper or books closer to the face.

• Rubella, toxoplasmosis, cytomegalovirus (CMV), or other infections in the baby in the mother’s womb.
• Problems associated with premature birth.
• Down syndrome, CHARGE syndrome, or other genetic conditions.
• Another cause for congenital deafblindness is cerebral palsy, which is a problem with the brain and nervous system that primarily affects movement and coordination.
• Congenital deafblindness also occurs due to Foetal alcohol syndrome or other health issues caused by the mother drinking alcohol during her pregnancy.

• Age-related hearing loss.
• Age-related eye problems, including cataracts, glaucoma, and age-related macular degeneration.
• Damage to the brain, for instance in case of a stroke, severe head injury, meningitis, and encephalitis.
• Usher syndrome is a genetic condition that affects vision, hearing, and balance.

Deafblindness can be detected anytime in life or soon after a baby is born. Let us know about the diagnosis procedures for deafblindness.

Deafblindness can be diagnosed in a baby during newborn screening, which is a series of checks to examine if the baby has any serious health issues from birth, including sight or hearing problems.

If deafblindness is not diagnosed at birth during newborn screening, and you start noticing symptoms of deafblindness in your child, take them for routine hearing and sight tests as they grow older. Speak to your child’s doctor if you have any concerns about their hearing or vision.

Deafblindness is more commonly seen in older individuals. Thus it is essential to have routine eye tests every two years. A hearing test at any time can help you diagnose problems with hearing loss. Sight tests will also identify your problems with vision. So, make sure you go for regular hearing and sight tests.

As soon as deafblindness has been identified, one should undergo a specialist assessment. This assessment should be carried out by a specifically trained professional who can identify the requirements of a deafblind person. The following criteria should be taken into consideration during the specialist assessment.

• One-to-one human contact
• Communication
• Social interactions
• Emotional wellbeing
• Support with mobility
• Rehabilitation

A deafblind individual should have access to services suitable to their level of hearing and sight.

Certain conditions that affect hearing and vision can be treated via medications or surgery.

For example,

• Cataracts are treated by surgically implanting an artificial lens in the eye.
• Glaucoma can be treated by using eye drops or laser surgery.
• Diabetic retinopathy is treated in its early stages through laser surgery.
• Some conditions like middle-ear infection or build-up of earwax should be treated to clear temporary hearing loss.

Care and support services for deafblind persons are available and these services are suitable to the level of hearing and sight loss one has, and as per an individual’s need.

The following could be an individual care plan for deafblindness.

• Help you do your work by yourself through guided training and support.
• Teach you various other methods of communication.
• Preserve and make the best of your remaining hearing or sight.
• In the case of children who are deafblind, parents should take special care to fulfill their educational needs.

Some of the most essential communication systems used by deafblind people to survive in their day-to-day lives are described below.

This is a tactile form of communication. Words are spelled onto the hands of the deafblind person, using set position and movement, such as touching the tip of their thumb using the communicator’s index finger to spell the letter “A”.

The block alphabet is yet another simple tactile form of communication. Here, a word is spelled out in capital letters that are drawn on the palm of the deafblind person.

This is a communication method that uses an adapted version of the British Sign Language (BSL). The deafblind person places their hands on top of the signer’s hand and feels what is being signed to them.

Visual frame signing is another communication method. The signs are adapted to be signed in a smaller space to match the size and position of a deafblind individual’s remaining eyesight.

Braille and Moon are other communication systems that are beneficial for deafblind persons.

In specific cases of deafblindness, a person’s vision might be improved by using low-vision aids, such as magnifying lenses, glasses, and task lights.

Specially designed items like keyboards and telephones might be beneficial to someone visually impaired. Moreover, several libraries stock a selection of large-print books and also “talking books”, that are quite useful for deafblind persons.

Hearing aids and implants can often improve a person’s hearing. These hearing aids use a microphone to pick up sound and an amplifier that makes it louder.

Hearing and sight loss in cases of congenital deafblindness can be detected soon after childbirth, during the newborn screening. However, you should visit your GP if you start noticing any deterioration in your hearing or eyesight at any point later in your life. Apart from this, make sure to visit your doctor if you are experiencing repeated ear infections because they could increase the risk of hearing loss.

If you are suffering from glaucoma or cataracts try to get them treated as soon as possible before they cause significant damage to your eyesight.

Deafblindness is a condition when the affected individual has little or no hearing and sight. It can either be congenital or acquired deafblindness. Anyone suffering from the condition should see their doctor for appropriate diagnosis and treatment. The primary means to get rid of deafblindness is by treating the underlying causes. However, in other cases, having the best support, care, and management helps immensely. Hearing aids, implants for hearing loss; and visual aids like Braille, Moon, and various other aids can be helpful for persons who are deafblind. It is always advisable to consult with your doctor in case you start experiencing a loss of hearing or sight.

References: