Deafblindness and Mental Health

People who are Deafblind face a unique set of challenges when it comes to their mental health and well-being.

What is Deafblindness?

Deafblind is a term to describe people who have both visual and hearing loss. The Australian Deafblind Council defines it as:

A unique and isolating sensory disability resulting from a combination of both hearing and vision loss or impairment, which significantly affects communication, socialisation, mobility and daily living.

The term “Deafblind”, one word with a capital D, is representative of those individuals, organisations and services who celebrate and promote Deafblind culture and sign language. Although, it should be noted that many people who have a combined vision and hearing loss may not use sign language or identify as being “Deafblind”. However, in saying this, combined vision and hearing loss is a unique and highly specialised area and the majority of people who experience this impairment of their senses will engage organisations and obtain services with people who identify strongly as being part of the “Deafblind culture and community”. The Deafblind community represents a unique, yet diverse cultural group within society. Deafblind people have their own language (usually a combination of sign language, tactile sign, spoken language, and braille), as well as their own social norms with respect to interpersonal proximity and touch. They present with their own unique orientation and mobility needs using a combination of guide dogs, long canes, digital way-finding technology and personal assistants. Some use hearing aids or cochlear implants, others do not. However, their common experience of a combination of impairments to both hearing and vision influences their experience of, and worldview concerning, the society in which they live.

In Australia nearly 100,000 people are reported to be deafblind; studies have suggested that 0.2% to 0.3% of the population may be deafblind.

There are two types of deafblindness: congenital and acquired. Congenital deafblindness refers to people who are born with visual and hearing loss, as a result of hereditary and genetic conditions, an infection contracted by the mother during pregnancy, or disease, injury or infection that affects the child early in their development. Acquired deafblindness refers to people who are either born deaf or hard of hearing, and then later develop vision impairment, or born with visual impairment and then later develop hearing loss. People who develop both hearing and vision loss later in life- due to the ageing process, for example- also fall into this category.

Deafblindness and Mental Health and Wellbeing

People who are deafblind face a unique set of challenges when it comes to their mental health and well-being. The emotional impact of deafblindness can vary greatly from person to person, however, it is generally true that many Deafblind people have challenges accessing information, communicating and socialising, which can have an impact on their emotional and mental well-being.

Deafblind Culture in Australia

From my observations of dealing with the Deafblind community here in Australia, I have observed a definite Deafblind culture; however, there have been few studies conducted into the meaning and impact of Deafblind culture on mental health. The culture may impact both in positive and negative ways upon the emotional well-being of Deafblind people. Furthermore, not all Deafblind people identify with the Deafblind culture and community.

There are few conversations had amongst the Deafblind community about mental health and wellbeing. Phrases such as, “crazy people”, “mental people” and “they are mad” are common. In other words, there is very much a culture amongst the Deafblind community- perhaps even more so that the mainstream population- of stigma, shame and silence in regards to emotional and mental health. Members of the community are embarrassed about accessing mental health support and are fearful of others finding out.

There is a lack of education about mental health in this area. Deafblind services are geared more towards disability than mental health, and there are few targeted programs and services. Additionally, mainstream mental health services are not equipped to deal with the unique set of challenges and issues surrounding mental illness amongst the Deafblind.

Lack of Research and Data

The majority of the literature pertaining to deafblindness relates to technology, education and vocational outcomes, and communication. There is very little research available on deafblindness and mental health, and no best practice clinical guidelines or training programs. There are no studies that explore the Deafblind culture and community, or its impact on mental wellbeing. There is also a lack of Deafblind authors and perspectives in the literature that is available. Furthermore, most interventions, services and programs are not empirically evaluated; in other words, we have no way of knowing if they are effective or not.