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.