MASKING COMMUNICATION
Many people with disabling hearing loss are su ering from isolation and exclusion, because they cannot interact easily when wearing a face mask; transparent masks provide a solution, writes Ádám Kósa
Icontinue to work in the European Parliament in these extraordinary times and, thanks to technological developments, online work does not pose a challenge for me and my sign-language interpreters, compared to other MEPs who may have found it more di cult to work remotely. My language is based on visual contact, and video platforms allow me to communicate freely. However, one barrier remains: with the outbreak of the Coronavirus and the compulsory masks that we now wear, it has become more di cult for deaf people and people sensitive to non-verbal language, such as those with autism or trisomy, to communicate with their relatives in their daily life. Wearing a mask that protects against Coronavirus makes lip-reading impossible. However, the solution could be to use a transparent mask.
There are 34.4 million adults in the EU with disabling hearing loss. Many of them are su ering from problems of isolation and exclusion because they cannot interact easily when wearing a face mask. In order to communicate through lip reading and facial gestures, they are using non-approved transparent masks, putting their health at risk. Others barely leave their homes because of the anxiety and depression su ered over fears of not being able to communicate. Transparent masks are an e ective solution, since they help people who normally communicate in sign languages to see the facial expressions and gestures that accompany the movement of their hands. I urge the European Commission to take steps to approve transparent masks in the European Union.
I have been a co-chair of the Disability Intergroup since 2009, and am now shadow rapporteur on the report on the implementation of the Council Directive on equal employment. I hope to help establish a general framework for equal treatment in employment and occupation in accordance with the UN’s Convention on the Rights of Persons with Disabilities (UNCRPD). Persons with disabilities are often denied their right to engage in work on an equal basis with others, and this must change. But how can we achieve such an ambitious goal, one might ask? I urge the EU institutions and Member States to build on the expertise of disabled persons’ organisations and to actively involve them in all disability-related decisions, which I have been doing since I was elected as an MEP in 2009.
Expert organisations representing people with disabilities can help define the most suitable digital tools or software for the individual needs of the person with a specific kind of disability. This is of the utmost importance during the COVID-19 crisis. I believe that Member States should ensure that people with disabilities have access to a ordable digital
“In order to communicate through lip reading and facial gestures, they are using non-approved transparent masks, putting their health at risk”
tools and software that are bespoke and cater to their individual needs and career paths. The European Commission has not yet published its new Disability Rights Strategy, as consultations with the cabinet of Equality Commissioner Helena Dalli are still ongoing. However I hope that the new strategy will not only summarise what has happened in the last 10 years but will also provide guidance on what needs to be done in the next 10, in all areas of EU policy, based on the recommendations of the UNCRPD Committee. It is important to strengthen both policy mainstreaming and monitoring. And when I say strengthening, I mean that we need adequate financial resources for both implementating and monitoring the post-2020 strategy.
I believe that the Commission will present a comprehensive, ambitious and long-term plan that clearly identifies priority areas and covers all parts of the UNCRPD Convention. But it is crucial that the document include definitions of key concepts; in particular, the definition of what constitutes a “disability”. Moreover, we need guidelines to ensure equal access to services (for example, health, education, public transport, housing, culture and sport). We should also not forget that the best legislation is only as good as its implementation. Therefore, Member States must also fully implement, and constantly monitor, all existing accessibility regulations, including the European Accessibility Act, the Audiovisual Media Services Directive, and the Web Accessibility Directive.
“Persons with disabilities are o en denied their right to engage in work on an equal basis with others and this must change”
Every year, 3.5 million people in the EU are diagnosed with cancer and 1.3 million die from it. But the EU’s flagship “Beating Cancer Plan” aims to reduce the cancer burden for patients, their families and health systems. The initiative was launched by EU Health and Food Safety Commissioner Stella Kyriakides in early February this year together with two public consultations. A pan-European strategy to combat cancer is seen as being long overdue and Europe’s public health community has welcomed new e orts to tackle the second leading cause of death in Europe.
The cancer plan was the subject of an online debate on 16 November, hosted by Greek MEP Maria Spyraki and Spyros Pappas, a former Commission Director General, and organised by The Parliament Magazine. Opening the virtual discussion, Christos Stylianides, former EU Commissioner for Humanitarian Aid and Crisis Management, said, “About 40 percent of all cancers are preventable so we must focus on harm reduction in the fight against cancer. I’ve worked for 30 years in medicine and know the importance of lifestyle issues and we must also look at the big picture and adopt a holistic approach.”
“More than 150 cancer medicines were developed in the last decade, and only nine of them, about six percent, were approved for children. We need to do more”
Maria Syraki MEP
He noted, “There is no doubt the cancer plan will focus on prevention, early diagnosis, treatment and quality of life and is a milestone in e orts to combat this deadly disease. But there is also no doubt that one important feature has been left out: harm reduction. I support the plan and, despite the current very di cult circumstances, there have been two rounds of public consultations with 2,500 contributions which get close to the heart of the problem. But many of the contributors also said they want a holistic harm reduction approach. While harm reduction measures for things like alcohol and tobacco were mentioned many times during the consultations, insu cient attention is being paid to this and I hope the Commission will focus more on this. In order to be even more e ective, the concept of harm reduction has to be part of what is an excellent and necessary plan.”
Spyraki, a member of Parliament’s new Special Committee on Beating Cancer, called for an increase in research e orts to target paediatric cancers. She said, “It is worth mentioning that more than 150 cancer medicines were developed in the last decade, and only nine of them, about six percent, were approved for children. We need to do more. Several forms of cancers that have unique epidemiological, biological and clinical characteristics occur among children. Knowing how cancers in children, teenagers and young adults start and develop for these causes is important for better prevention and the development of more successful treatment options.” The EPP member added, “Addressing paediatric cancer is a topic that as a parent I feel very strongly about, and this is why I recently launched a platform in Greece to mobilise citizens, academics, doctors and non-profit organisations to act in a coordinated way to raise awareness on this important issue.”
Pappas said, “We have now entered the age of pandemics, and health is on the top of everyone’s list of priorities. This includes the upcoming Conference on the Future of Europe, so now is a good time to stick to our promises and deliver, not least because this will help get us closer to citizens.” He added,
“But this is something that must be addressed holistically and systemically and the Commission is best placed to do this.”
Emma Calvert, food policy o cer at BEUC, the European Consumer Organisation, said that food policy can “feed into” successful cancer prevention policies. She said, “There is, for example, a clear link between cancer and obesity. In Europe, we know that half of adults are overweight or obese and one in three children are overweight. There are key areas where more ambitious action could be taken, for example, in front-of-pack food labelling. This is a hot topic at present but, unfortunately, we currently only have nutritional tables which give information in a tiny font at the back of products which is di cult for consumers to understand. Better labelling would allow consumers to make a more informed choice in supermarkets.”
Professor Hendrik Van Poppel, Adjunct Secretary General of the European Association of Urology (EUA), focused on prostate cancer, saying it was “very important” to raise public awareness of this. “We have to realise that, currently, women are more interested in prostate cancer than men. Men still don’t like to speak about it even though it is the second most common cause of death in men after lung cancer.” There was also an economic issue, he argued, as it costs an estimated €250,000 to treat someone with advanced prostate cancer in the last two years of their life. He said that screening programmes and prostate-specific antigen (PSA) blood testing can reduce mortality by about 50 percent, adding, “It cannot be prevented but when it is caught early it can be cured.”
“We must focus on harm reduction in the fight against cancer. I’ve worked for 30 years in medicine and know the importance of lifestyle issues”
Christos Stylianides, former EU Commissioner for Humanitarian Aid and Crisis Management