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Thursday, July 12 2012 08: 51

Secret resources in disease

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Reflection from the prof. Mario Melazzini

«People with disabilities can be happy». We asked Mario Melazzini, former hospital head, suffering from amyotrophic lateral sclerosis (ALS) and now national president of Aisla, the association for research on ALS, for a reflection on living today in disability, starting also from the personal experience of he. «In our society, living with a serious illness or disability - as Melazzini begins - creates anguish and we do everything we can to ward off the thought of it, or if it actually happens, to ward off the situation.

This is a bit like what happened to me at the beginning, despite being attentive to values, to weak and fragile people. I have always considered this fact of living with an illness condition, which entailed a serious disability, not combinable with a life that could continue and was worthy. Paradoxically I also clashed with what my ideas could have been." «In fact, I understood that this is just a prejudice - adds Melazzini - a preconception that we build because we don't want to admit that illness or disability are part of our life path. We must be put in a position to be able to continue our life journey. Therefore, we must reprogram ourselves, but at the same time the institutions must guarantee us the path in the best possible way."     
The doctor-patient relationship must also be based not only on the therapeutic alliance, according to Melazzini, but must be built «on a process of sharing, of mutual help, a compassion in sharing the pain together, leading to a greater awareness of the pain. A paradox that needs to be erased is that non-disabled people assume that a life in such conditions cannot be worthy of happiness. Instead, people with disabilities are happy and make their situation an added value. it is precisely not knowing or not wanting to know that gives rise to conclusions that can lead to dramatic and hasty decisions on the part of those who are carriers of serious illnesses: conditions of fragility because they know a priori that the system will not guarantee them an answer or that society will isolate them.     
A country with 2.600.000 cases of disability - concludes Melazzini - does not consider itself competitive because the person is seen as a cost and not as a resource. The person with disabilities, on the contrary, is a resource also in light of law 18 of 2009, which ratifies the UN convention which states that anyone must be free to participate in an integral, synergistic and equal manner in society".

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