| Managing IRDs |
In some people, the degenerative process begins during adulthood. They “unconsciously” erase all their previous visual experiences: it’s a psychological reaction to the condition. Thus, they really need a “carer” because they can no longer do anything. Their mind forgets and cannot retrieve all the skills they possessed before from their store of experiences. On the other hand, in children who are used to this type of vision from an early age, visual function adapts, even if it gradually diminishes. They can create compensatory strategies more quickly, even if, while working on it, we realize that their visual acuity or visual field have worsened. (Interviewee 002)
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| Communication of the diagnosis |
)…Colleagues who are not familiar with this condition are sometimes caught off guard. In the past, there have been communication issues.(…)Over the years, I have seen everything: from diagnoses not being communicated even when clear and evident, to children being told to learn Braille. Sometimes prognoses were communicated incorrectly; patients perceived them as crude, or they were told not to have children, because they would all be suffering from the same condition. (Interviewee 001)
We still have situations where the diagnosis is communicated violently: unfortunately, there is no cure for the disease, blindness could occur, but we do not know when… Verbal violence is where any kind of hope is taken away.(…)The main issue after the diagnosis is the psychological one. Suppose the diagnosis is communicated together with the possibility of recuperation, in which case one can deal with it somehow; but if it is expressed without this possibility, people don’t even undergo check-ups anymore. (Interviewee 004)
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| Attention to partner and parental caregivers |
Some couples,(…)when they discovered the condition experienced a crisis.(…)What I noticed is that the way a caregiver treats his/her partner changes a lot: It’s more imperative (Interviewee 002)
A parent cannot serenely accept the condition of a child. Mothers are confronted with this issue daily, that is, they are considered “good mothers” if they can accept it, and this translates into the thought “I am not a good mother, I will not be a good mother”.(…)These parents often call the child “sick”. Disability is not a disease, but a condition. In pregnancy, parents expect to have a “healthy” child: the hope is to regain this healthy child, even when it is objectively impossible. (Interviewee 003)
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| Lack of knowledge of IRDs |
In terms of daily life, people with this condition experience uncertainty, which is not even daily, but hourly. They may not see the same things at 10:00 and 10:30 am, because of a series of parameters that come into play: size, permanence, brightness, which give the retina a different visual function. So, this uncertainty generates other insecurities, and often triggers profound depressive states. This is not understood by other people. Often, at school, teachers do not understand how the child could see the blackboard at the beginning of the lesson and not at the end. The explanation is evident to those who know these disorders: maybe the sun’s angle had changed, of fatigue may come in to play, together with a series of parameters that determine a visual loss. (Interviewee 002)
I believe that initiatives are needed to allow people gain experience. For children, we could think of initiatives in school, which should be carried out regardless of the presence in the class of a child with this condition. We need to create a “culture”(…), a culture of confrontation with diversity. (Interviewee 003)
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| New investigation tools |
The dimension of being with others is entirely missing: all activities are investigated as if they were carried out by the person alone, but rarely people with this condition are alone, especially after sunset. (Interviewee 003)
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