Deafblindness:

Deafblindness is a specific type of combined disability that affects between 0.2% and 2% of the population. The World Federation of the Deafblind (WFDB) defines it as: “(…) a distinct disability resulting from a dual sensory impairment of such severity that the senses cannot compensate for each other. When interacting with environmental barriers, it affects social life, communication, access to information, orientation, and mobility. Enabling integration and participation requires accessibility measures and access to specific support services, such as an interpreter-guide, among others.”

Deafblindness is a separate disability and a combined visual and hearing impairment. It limits a person’s activity and restricts full participation in social life to such an extent that society is obliged to facilitate the use of specific services, environmental changes, or technology.

As it can arise/develop at different stages of a person’s life, the literature distinguishes between two main types. These have been defined in relation to the degree of communication development and language acquisition:

• Pre-lingual deafblindness refers to hearing and vision impairment present from birth or acquired early in life, before learning spoken language. It is usually the result of infection during pregnancy, premature birth, complications during childbirth, or genetic disorders (e.g., Down syndrome, Usher syndrome, CHARGE syndrome).
• Post-lingual deafblindness refers to hearing and vision impairment acquired after the development of language (spoken or sign language). It is most often the result of illness or accident, and is often strongly correlated with age. Conditions such as cataracts, glaucoma, and macular degeneration cause vision loss, while presbyopia, for example, causes hearing loss. Therefore, older people predominate in this group.

Deafblind people are:

• partially deaf and partially blind
• partially deaf and completely blind
• completely deaf and partially blind
• completely deaf and completely blind

This heterogeneity of the environment necessitates an individual approach to the needs and limitations of each individual. It is crucial to understand that deafblind people have unique coping strategies and face different barriers. For example, a person with advanced cataracts sees and navigates space differently than a person with peripheral vision, even though both can be described as visually impaired.

Older Persons with Deafblindness

Similarly, depending on the age at which vision or hearing impairment was acquired, the specific limitations and needs of this group vary dramatically. In the deafblind community, the term Older Persons with Deafblindness is used to refer to people aged 65+. However, it is worth noting that this definition is used in Eurocentric countries. For example, in the deafblind community in Kenya, a person over the age of 40 may be considered “elderly.”

Among Older Persons with Deafblindness, four distinct groups can also be distinguished, depending on the development of the disability over time.

• Deafblind people who began to lose their sight and hearing regardless of age.
• Hard of hearing people who began to lose their sight with age.
• Visually impaired people who began to lose their hearing with age.
• Deafblind people who began to lose their sight and hearing with age.

The group of older people who have acquired a disability with age is even more vulnerable to isolation. This is mainly due to the significantly greater difficulty in learning alternative methods of communication, as well as a general radical change in the quality of life.

Children, adolescents, and young adults with deafblindness

Although there are more deafblind people among the elderly, among children and young people this disability creates unique problems related to education and later opportunities in the labor market. Each deafblind person experiences and communicates with the world in their own unique way. The degree of hearing and vision impairment has a significant impact on the strategies used in the upbringing, education, and development of a young deafblind person.

With mild sensory impairment, a child can attend a regular school, using hearing aids or optical aids, learn spoken language, and participate in classes on an equal footing with able-bodied children. In cases of more advanced sensory impairment, it may be necessary to send the child to a school or specialist center where teachers are appropriately trained and the space and teaching aids are adapted to the needs of the students. This experience is extremely important for the social and psychophysical development of a young person. The fact that such facilities are usually located far from the person’s family home has a huge impact on their mental and social development.

Similarly, young adults with deafblindness must overcome a number of barriers in order to obtain higher education and start a career. This often requires increased efforts to obtain (in theory guaranteed) support, e.g., in the form of installing induction loops in lecture halls, access to programs that facilitate computer work, financial and material support, etc.

This is also a time marked by the pursuit of independence, creating one’s own life, and physical and social maturation. This is difficult for anyone, but for OGN, a number of barriers are compounded by additional prejudice, marginalization, and discrimination related to disability.

Deafblind people in Poland

Awareness and knowledge in this area in Poland is very limited, primarily for one very simple reason. According to Polish law, our system does not recognize deafblind people — they must choose whether they are more deaf or more blind. In their disability certificate, they can have both visual and hearing impairments listed, but as two separate codes, which results in a number of unique problems that manifest themselves in various ways. First of all, there is a lack of any specific data on how many people with this type of disability live in Poland, but there are also problems in areas that are very important for improving the quality of life, such as obtaining specialized rehabilitation equipment.

Most scientific publications attempting to describe the situation refer to reports by the World Federation of the Deafblind, and in the Polish context, cite materials from the Society for the Deafblind. In 2016, the association published a report in which, with the aim of educating and promoting activism on behalf of deafblind people, they tried to describe the reality in our country as accurately as possible; “According to our estimates, there are approximately 5,000-7,000 people in Poland with severe visual and hearing impairments, of whom approximately 2,500 are under the care of the Society for the Deafblind.”

However, the exact numbers are unknown.