Milan, April 30, 2022 – What do you want to do? Do you want to continue working? ”This is the question that Eleonora Nucera on 18 September 2012 she heard from the owner of the gift shop for which she had been placed under contract as a shop assistant. Yes, Eleonora would have liked so much to continue working. And yet that job was the last. From September 2012 to date she hasn’t found anyone willing to hire her. That question about her was asked at a watershed moment in her life: a few months before her, on July 4 of the same year, she had been diagnosed with multiple sclerosis.
“This is the reason why in 2012 that contract for that shop, once it expired, was never renewed – rexplains Eleonora, who is now 39 years old -. And this is the reason why I have not found any more employment: I asked questions about questions, sent curriculum vitae to resume, participated in interviews on interviews but when you say “multiple sclerosis” every door closes. “A situation, this, that Eleonora shares, unfortunately, with many other people who have encountered this neurodegenerative disease on their way.
A situation that weighs particularly heavily on Eleonora if we consider that she started working early and that for her having a job does not mean just having one. salary at the end of the month: “I started at 14, even 8 or 9 hours a day, I paid for my driving license and the first car by myself, I depended only on myself: this is what I lack, independence. Since September I depend on my husband in 2012. But it’s not just this – explains Eleonora -: for a sick person the value of work is also psychological. Work is life, it is movement, it is escaping from the thought of the disease, feeling healthy and “normal” at least in that lapse of time that you spend working together with others. Work is a fact of social openness, for me “.
There is a law which protects the right and the possibility of working for people with disabilities, is 68 of 1999: “It is excellent but should be completed with more precise prescriptions for those living with degenerative diseases” explains Eleonora, without hiding from herself the limits that sclerosis multiple imposes in the workplace. “The big problem for us, the substantial problem, is tiredness. I take a break every day from noon to 2.30: in those two hours I absolutely need to rest in order to then leave again and, for example, go to pick up my daughter from school at 15.30 “. For this reason, according to Eleonora, “it would be necessary for the legislation to identify the work tasks that are particularly suitable for those with multiple sclerosis”.
Eleonora volunteers and his task for the association consists in entering data, in keeping and taking care of the agenda, in making and coordinating appointments. “This is a completely suitable job for those who have a degenerative disease – assures Eleonora -. And when I spend my time in this activity I am happy, I feel happy, I don’t think about my illness, I talk about everything with the other volunteers. This is the psychological value of work to which I referred earlier “. And to preserve it, to ensure that this value can be concretely experienced and realized” it is right – again according to Eleonora – to pay a little more attention to companies as well. From the point of view of the law, it would take some facilitation and some more guarantees for entrepreneurs or business owners who make themselves available to hire people with disabilities, guaranteeing them what is and what remains, in any case, a right. The right to work. “That job that this 39-year-old woman has no longer been able to find since she was diagnosed with multiple sclerosis. An immaterial barrier. And yet one of the most hateful.