Shana Pezaro is a campaigner for the needs of people with multiple sclerosis (MS). She was diagnosed with MS six years ago and since she has been involved in advocacy and awareness-raising activities, constantly engaging with decision-makers.
“I live with multiple sclerosis, and so do 600,000 fellow Europeans. Almost three-thirds of us are diagnosed in our 20s and 30s. MS hits us at a time when we have just started off into our lives and careers, and it hits hard.
Currently, two in five people with MS aged under 35 are unable to work or study. Many – I would say most – of us can and want to contribute to society, but we get excluded from working life.
I am not an unusual case. I was diagnosed with MS six years ago, aged 28. By that point I was already extremely ill and I was signed off of work permanently.
In fact, I have been in and out of hospitals for almost 30 years. Although going to school became impossible when I was 17, I managed to learn from home, take my A-exams and then move on to become a graduate of Theatre and Film at the University of Bristol, aged 22.
Afterwards I started working in television production. I was excellent at my job during the periods I was feeling well, but at other times I had to rely on my colleagues to help me with even the most simplest of tasks, like putting clothes on and getting out of the house.
I was frequently falling over and experiencing severe kidney infections and acute face pain. Fatigue and lack of concentration recurrently kicked in as well. After two years, I really couldn’t cope with that job anymore.
I desperately wanted to continue working, but I needed to be flexible and work in a way that suited my health problems. So I started my own business and set up a children’s stage school and theatrical agency.
After five years, I had 300 students and 13 members of staff, but I was very, very ill. I had two operations on my legs and ankles and had to stop teaching piano because I couldn’t rely on my hands all the time. I also suffered from recurrent blurred vision and slurred speech. Eventually, I had to sell my business.
I am however able to say that I managed to stay in employment for quite a while, considering my condition. But I realise now that it would have been very difficult for me to accommodate an employee with MS. Not for the contributions the person could have made, but simply because I couldn’t have afforded to pay regular sick leave and cope with the costs of finding a substitute.
I am pleading for the fight against MS because this is the disorder I know best. However, there are many other neurodegenerative diseases – we are over 9 million in Europe!
As the panel discussion “Neurodegenerative diseases at the workplace” is meant to show, European decision-makers and employers can do better, even in times of crisis. How much talent do we risk wasting if we continue with business as usual? And how much money does that cost?”
So what can be done? Some of the adaptations can be very simple. For instance, MS generally comes with fatigue. Why don’t more employers offer flexible hours, improved accessibility and a special area for “power naps”?
Other goals, for instance changing mind sets and covering for sick leave, need more investment. But this will eventually pay off.
As recently as last week it became apparent that European leaders such as Angela Merkel, François Hollande and Mariano Rajoy are planning to make €6 billion available in 2014 and 2015 for employment programmes meant to help young people out of work – their numbers soared to 14 million in the European Union.
We need to call upon the EU to dedicate a portion of those funds to raise employer awareness and help adapt the workplace. We also need to make the case for further investments.
People with disorders of the central nervous system want to be recognised for the contribution they can make to companies and to the wider culture of the EU.
EMSP’s Under Pressure project illustrates through powerful photos and videos how the condition of people is intrinsically linked with the support they are being offered from governments and employers.
We’re not asking for charity, we’re asking for our talent to be put to good use. One very good example comes to mind: Martina from Italy.”
