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DEAFBLINDNESS ACQUIRED EARLY IN LIFE

Contrary to what the term ‘deafblindness’ makes us think, most people are not completely deaf and blind. Most of them can still hear or see something.

Becoming both deaf and blind in the course of life is also called ‘deafblindness acquired early in life’. Usher Syndrome is the most common type of deafblindness acquired early in life. 

CRITERIA FOR REQUESTS FOR CARE AND HELP

The Social and Cultural Planning Bureau uses the following criteria for deafblindness:

  • “Deafblind is a loss of hearing of 35 decibel or more, a loss of eyesight in clear vision of 0.30 or less and/or a field of vision of 30 degrees or less.” 
  • “Deafblindness is a combination of being deaf/hard of hearing and blindness/poor eyesight. Deafblindness hinders people in communication, obtaining information and mobility. Without adjustments, aids and/or support from others, deafblind people cannot participate in daily and social life just like that.” 

These criteria can help you when applying for aids and provisions and for obtaining allowances from the Social Support Act (WMO in Dutch). 

LABELLING IN HEALTH CARE

There is a lot of miscommunication in health care and provision of services by the use of terms such as ‘deafblind’, ‘care of deafblind people’ and ‘deafblind clients or patients’. These terms all have different perceptions and impose perspectives on others. 

A person can have a feeling of being a patient while there are no medical reasons for using this term and a physician can call someone a patient who does not feel like a patient.
A health care professional can call someone deafblind or attribute impairment in hearing or eyesight to a person, whereas this person does not feel deafblind or impaired. By labelling a person with ‘deafblind’, ‘impaired’ or ‘patient’, this person is reduced to this label and the stratification of the individual is neglected. 

The feeling of being seriously impaired or deafblind does occur, but it is often of a temporary nature. Mostly this feeling concurs with a highly confrontational situation or period. Your eyesight and/or hearing deteriorated again, you notice that you do not get everything or that you cannot (or no longer) do something that you used to be able to. You have to let go (again) certain activities you like or you need more help or adjustments. 

Most people suffering from Usher Syndrome indicate that they ARE not handicapped/impaired/deafblind, but that they HAVE an impairment. They HAVE a type of deafblindness, but they ARE NOT the disease or the impairment. The use of the label ‘deafblind’ or the application of ‘deafblind-specific ways’ in revalidation, care and service creates resistance. 

The diagnosis for Usher Syndrome is really far-reaching and has a heavy impact on the picture of the future, self-confidence and self-image. Fortunately, most people suffering from Usher are highly resilient and they also often have a very strong drive for autonomy and keeping in charge. 

A LIFE-LONG PROCESS

Children suffering from Usher Syndrome are born very hard of hearing or deaf, but they do not yet have any visual impairment. Some adults suffering from Usher Syndrome already have retinitis pigmentosa in an advanced stage and still they do not feel deafblind. With these people the process of loss keeps continuing.
Therefore most people suffering from Usher Syndrome indicate that the term ‘deafblind’ is not entirely correct. Usher Syndrome is characterised by the continuing process of loss, letting things go and finding new possibilities. It is not a status quo.
Stichting Ushersyndroom does not want to put emphasis on the definition of deafblindness or deafblind. Usher Syndrome is a life-long process of slowly becoming both deaf and blind.
Usher Syndrome is: 

A life-long process of loss of the two most important senses that negatively strengthen each other. 

This process is also called ‘living loss’. 

LIVING LOSS