In Rende (CS), living with ALS and delegated by the mayor to handle disability related issues

We interviewed Nadia Mondera, 54, of Castrolibero in the province of Cosenza, diagnosed with Amyotrophic Lateral Sclerosis. Since December 16, 2016 she’s been entrusted by the mayor of Rende (CS) to handle disability related issues. Nadia communicates with the world from her bed, using only her eyes, with which she composes words on the screen that the computer then produces in voice. That’s how she interacts with the city administration, giving suggestions, proposing solutions, collaborating on the defining of concrete projects. Meanwhile, at the Museo del presente of Rende (CS), on November 16, at 5 pm, a scientific conference on Amyotrophic Lateral Sclerosis is planned, in which neurologists, university professors, researchers, AISLA representatives, and psychologists AISLA-GipSLA will discuss this disease. For this occasion, Nadia Mondera will be making her own personal contribution.

What did you think when you were commissioned for this endeavor?

Well, I immediately thought that in this way I could engage in something useful. I could make a contribution to solving many problems affecting the disabled, especially the serious ones. Because I was experiencing those problems as well.

The more serious problems…

AISLA patients need everything, being always in bed and not moving a muscle. They need continuous care, not only for general cleanliness but also for aspirations, to release the mucus from the trachea. Of course, they need surveillance, a person listening for machine noise, understanding when there’s something wrong. I have now learned to distinguish the sounds of these machines so much to tell the care givers what happened before they even manage to understand it themselves. Let’s say I’ve become an expert!!

But certainly alone, you can not cope with all the problems. The institutions?

It is difficult for local authorities to meet all our needs, assuring us 24 hours a day that they can do what we need. We pay with the help of caregivers, often foreign, that help us to move forward.

An economic burden that only affects the sick person and the families, or not?

Yes, because the meager pensions are totally inadequate, even if you add in the accompanying allowance. There should be more help from the institutions, no doubt. I take this opportunity, therefore, to urge the Calabrian Region to pay off the funds for serious disabilities that the government has allocated for 2014, of which we have not even seen a penny to date! I know that the request was presented incorrectly, providing an opportunity for the less disabled people to receive funds, leaving the resources insufficient. This, however does not mean that those who use the money to pay their expenses are those who really need it. To us, that money is urgent , because as they say, “no money, no honey.”

What do you need most, right now?

A new, more modern, voice communicator. For us this tool is indispensable. It is the medium through which we communicate. The version I’m using is outdated, so it does not allow me to connect to social networks, for example. I hope to have one more sophisticated as soon as possible. In fact, it would be very important to connect the computer to some basic functions such as raising or lowering the volume of the television, turning on or off the light, the radiators. Simple things, which for those in our state are grandiose. I hope one day we get to this.

And your “political” work?

When I can, when I need it, I interfere with the junta, with the councilor for social policies, to give suggestions, to ask something to be done. However, I am contributing to the drafting of a broader disability-oriented project aimed at enhancing the residual capacity of the disabled. I do not expect more because I want it to be done first. Maybe then we can talk more about it.

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