As AEGEEans we all know how much fun Summer Universities are. It’s that time of the year  when we all get the opportunity to explore new regions and cultures —and of course love the program and the parties that the respective antennas organise. However, SUs are also a great place to learn something new about the important issues of our time. Many of them offer thematic workshops and this year’s  SU of AEGEE-Iaşi collaborated with the Social Equity Working Group to teach the participants all about social equity, refugees, discrimination and much more. Meet the SEWG-trainer Florina Neagu and find out how and why she and her team planned the workshops and how they went in the end!

Hey Florina, and thank you for answering some questions for us! First of all, can you introduce yourself and your team that created the sessions to our readers? Why did you decide to join the Summer University of AEGEE-Iaşi to hold workshops on social equity?

I’m Florina, member of AEGEE-Göteborg & AEGEE-Iaşi, and until August this year, I was the coordinator of the Social Equity Working Group. The sessions were part of the work I’ve done in the working group during the last term, together with my team, Anna Lena (AEGEE-Heidelberg), Carmen (AEGEE-Erfurt), Milica and Nevena (AEGEE-Niš), Alba (AEGEE-Alicante), Ana Isabel (AEGEE-Valladolid), and of course, Teddy,  our CD-appointed member. Since the drafting of our Activity Plan, we planned to collaborate with Locals and other EBs for at least two Summer Universities and when the opportunity came, we were more than happy to help and share our materials. Being a member of AEGEE-Iaşi and involved in this SU in the previous years, I was already following their work. And due to the situation in Ukraine and the involvement of Romania in helping refugees, they approached us to talk about discrimination based on place of origin. We focused on this topic before, under Action 4 of the Action Agenda (AA), therefore we wanted to share our sessions with others.

How did you perceive the reaction of the participants to the sometimes difficult topics you were covering? Were you surprised by some of them?

I joined the working group after its creation, in 2020, and what I have learned during this time is that we are always dealing with sensitive subjects as part of our work. Moreover, we cannot always have a session with participants with the same views. It is also very common to encounter some racist or discriminatory behaviour. This is why we do what we do: try to raise awareness, educate others and ask them to reflect on their own ideas. However, I was personally surprised by this SU, because most of the participants did not know that much about the thematic focus of the event, and still, they got involved in every discussion and shared their own views. Also, I had many discussions with the participants after the session and I realised that even after it was over, they were questioning some of the things presented and reflecting on their own positions. 

We had this session, for example, on what is privilege and how to recognise it, that we also delivered at the last Agora — though in this SU, we chose to change it a bit, use fictional roles and ask participants to put themselves in other people’s shoes. We tried role play because of the particularity of SUs, where people usually go to have fun and travel. However, after the session was over, I was surprised that many participants wanted to do it from their own perspectives. And this is always hard because it gets very personal when we realise how privileged we are in comparison with others. But they were so invested in this activity that they were willing to question their own position. I was there to share with them our knowledge, but in the end, I learned a lot of things from each one of them and hopefully, the working group can take it further. 

How did your team prepare the workshops? Was there anything you considered as particularly important? 

Our plan for this term was to have some sessions under each action of the Action Agenda, and,  in this way, raise awareness about all the topics we covered this year. For big activities like a SU, we always have to keep in mind that there are multiple sessions throughout the whole event, so we try to link them. Also, not everyone is usually familiar with these topics, that’s why we start with some introductory sessions and then dive into the main topic.  

For this SU, we actually combined some sessions created under Action 1, for example, about privilege, intersectionality or personal identity, as an introduction, and then we started talking about discrimination based on place of origin. We didn’t just want to present migration as a general phenomenon. We tried to bring to the discussion topics such as countering stereotypes about people with a migratory background, challenging negative narratives in the media or exploring humanitarian work on the ground. We had, for example, a collaboration with the Romanian Red Cross – Brașov Branch, where one of their volunteers shared with everyone about his experience helping Ukrainian refugees at the border. The most important thing for us in this event is what the participants can take further, practical tips about how they can tackle discrimination and negative narratives in their daily life. 

During the workshops did everything go according to the plan? How did you respond to problems?

When it comes to the issues mentioned before about the overall atmosphere in the group, we try to be prepared for everything. Luckily, even when having contradictory ideas, the participants managed to keep a high level of respect for each other and had constructive debates. We always had people participating in the discussions, but maybe not everyone was interested in these topics at the beginning. So sometimes we had to adapt and let them get involved in interactive debates, rather than sharing our knowledge on the topic. We even adapted the energisers and icebreakers to link them more with the main theme of the workshop. We had to “deviate from the original script” sometimes and let them share more, so they could understand better from their own examples and discussion. We also had some problems, mainly due to organisational reasons, such as a change of venue, schedule or missing logistics. But as mentioned, I was ready for it, so I think in the end we had an amazing learning experience.

One of the sessions you presented was dealing with the issue of refugees. In these times this is a topic more pressing than ever before as people have to leave their homes because of climate change, wars, economic downturns and other factors. Is there some fact about the topic of refugees or migration that you think everyone should be aware of?

When we approach the topic of discrimination based on place of origin in our sessions, we always try to highlight that there are different types of migration, with multiple causes, and that even defining the concept of “migrant” is complicated. There is a risk nowadays of blurring the line that separates different groups of migrants, because not everyone is a refugee, and knowing the difference between them, asylum-seekers, internally displaced people and other migrants, is very important. Different groups leave their home for different reasons, and they receive protection based on their circumstances. People don’t look for refuge in other countries only because of war, but also due to other factors, as you mentioned, which are sometimes missed in the conversation about migration. We also encourage people to look beyond these labels, as they are temporary and do not reflect the whole identity of those leaving their homes. Unfortunately, nowadays, the debate on migration rarely takes into account the facts or the individual life stories of those involved. Women are rarely quoted, while information that we receive through political discourse, on social media or tv, is dominated by misinformation, sensationalism and prejudices. Everyone should always pay attention to these issues and make sure to contribute to debunking the myths and stereotypes spread through different channels. 

What can we as members of AEGEE do to help people that have to leave their homes?

There is a short video from Amnesty International that we included in our sessions and that illustrates perfectly how anyone can help, no matter the resources or the country where you are coming from. We, as an organisation and individuals, most of us coming from a privileged background, have so much to offer, through different means: 

• Start by getting informed, be aware of the factors that force people to leave their homes and debunk all those stereotypes used to instigate hatred and discrimination. 
• Raise awareness and speak up, whether you do it on Social Media, in an activity organised by your Local, in a discussion of our working group or in a debate with decision-makers in your own city. 
• Support different campaigns to help people on the move and when possible, host refugees and asylum seekers in your home or look for volunteering opportunities in your city. 

Keep following the Social Equity Working Group, because the next Action Agenda has an entire action dedicated to this topic and they are planning many activities where you can get involved, individually or together with your Local!

This time we have the pleasure to get to know more about the #Breakingthebias campaign and their goals and their ideas. The event is hosted by the Social Equity Working group and we have the lovely coordinator of the group, Florina-Marieta Neagu, answer some questions:

Can you tell us a bit more about #BreakingtheBias campaign? What exactly have you planned and who is involved?

This year’s campaign focuses on raising awareness against bias in schools and workplaces, on promoting women’s achievements and advocating for equity in opportunity and accessibility in education for women. As part of the campaign, we have planned some events that take place online and offline during March 2021, including sessions, a book club night, Europe Café, a pub quiz or Instagram Live interviews. These events are also accompanied by a Social Media campaign and collaborations with other external stakeholders, European Bodies and Locals of AEGEE. The campaign is organised under Action 3 of this year’s Action Agenda and is also part of the International Women’s Day global initiative. #Breakthebias is the global slogan used by many organisations this year and the Social Equity Working Group decided to join the movement that promotes action against various biases women carry. 

Here is a sneak peak of our future activities:

• Instagram Lives: with HerTime Romania, next Saturday, March 19, at 18:00 CET/Upcoming weeks: with EoT9 Team & Safe Person Committee
• Book Club Event: March 24, at 19:30 CET
• Human Library Promoting Equity – no matter where from: Sunday, March 27, at 13:00 CET
• Daily Informative Content on our channels (Social Media Campaign)

How did you come up with the idea? 

As our work addresses topics such as the promotion of equity and human rights, but also tackling discrimination based on multiple grounds, we decided to dedicate a whole month to one of the International days with long history and achievements since then – International Women’s Day. This is also a follow-up to the campaign on the same topic from the last term. But this year we decided to focus on breaking the bias in schools and at the workplace, in line with the global campaign with the same name and because the third action of the Action Agenda focuses on AEGEEans advocating for equity in opportunity and accessibility in education. We thought there is still a lot of work to be done in achieving our definitions of success in this thematic area and fulfilling our objectives for this year, and this campaign became one of the means to do it. 

What are your goals with this project?

Every campaign is special itself and deserves attention, so this one aims at pointing out achievements so far, to remind society of the unlimited potential women have as well as to speak up about existing problems women are experiencing on a daily basis. Through events, we reach out to activists, professionals and young women around Europe who are eager to share their views on the topic of equity and their experience as women in different professional fields or simply advocate for equal opportunities. We are also trying to reach more AEGEEans and collaborate with Locals in organising their own campaign and events. 

Some of the main goals are raising awareness about existing bias in schools and workplaces which limit women’s access to opportunities and education, providing youth with relevant information and resources necessary to act against discrimination in these environments and promoting women’s achievement and experiences through external collaborations. 

What are you expecting from these collaborations and what is the value you want to bring to the network?

We love collaborating with external stakeholders, due to the valuable experience they can bring to the conversation. From having an Instagram Live with someone from Plan International or HerTime Romania, to listening to the stories of activists during a human library, we get the chance to share different perspectives on a common topic.  And then we have Instagram Lives with projects such as Europe on Track or with the Safe Person Committee which gives us the opportunity to learn also about the work done by AEGEE in breaking the bias and achieving gender equity. We are also open to collaborating with other bodies and Locals, to spread the word about the topic but also to encourage them to get involved more in fulfilling the Action Agenda. 

Gender Equality is one of the most important issues of our time. What do you think are important measures that need to be taken in order to create a better environment in which men and women are treated equally?

Although gender equality is an important issue nowadays, in order to have an environment in which men and women are treated equally, we first need to make sure that women have enough opportunities to reach this position. For this reason, our thematic area deals with gender equity and its achievement in a society requires a lot of individual and collective action.  

Speaking from the point of view of our work, raising awareness by campaigns like this one is one step ahead to breaking stereotypes and reaching our goals under this year’s Action Agenda. Along with education about gender equality and equity, which should be incorporated in every day’s actions, we are also aiming at creating a safe space for everyone, no matter their gender. There is also openness for new experiences and knowledge about equity if we speak about individuals who can make a difference in their life as well as the lives of those close to them. However, we also call upon decision-makers, governments and organisations to advocate for equal opportunities and create policies that might ease the positive change in society. By advocating for equity in the opportunity, we are building a more powerful society and a safer place to live in. Also, gender inequality is an issue that exists 365 days a year and International

Women’s Day is only a reminder of existing barriers women still experience. The fight for equity is timeless but filled with hope and it depends on each one of us to join the movement and #breakthebias.

If you are interested in collaborating with them you can fill out this form: 

https://forms.gle/GghUpEmzoaE9fJK76 and if you want to find out more or keep up with their work you can follow them on social media!

On the occasion of Tourettes Awareness Day on 7th June and as a part of “Disability Awareness Campaign ”, Social Equity Working Group of AEGEE Europe decided to raise the awareness of challenges that young people with Tourette Syndrome tackle on a daily basis through interview with one of the members of European organization that focuses on Tourette syndrome, European Society for the Study of Tourette Syndrome (ESSTS). We are presenting you with an interview with expert interview partner Dr. Nanette Mol Debes, board member & Vice-Chair of ESSTS. 

Nanette Mol Debes is working as a neuro-pediatrician (combined research and clinical position) at the paediatric department, Herlev University Hospital in Denmark and clinical associate professor at the University of Copenhagen. She graduated from Katholieke Universiteit Nijmegen (Holland) in 2002. In 2009, she finished her PhD study “Tourette syndrome and co-morbidity – Diagnostic process and impact of psychosocial consequences, severity of tics, pharmacological treatment, and intelligence” (University of Copenhagen). In 2014, she finished her medical specialization in paediatrics, and in 2017 the sub specialisation in neuropediatrics. She is currently leading several scientific research projects on Tourette syndrome, paediatric headache, sleeping disorders in children and adolescents, post-streptococcal neuropsychiatric disorders, cerebral palsy, and epilepsy in children and adolescents.

If you need to define Tourette syndrome, how would you simply describe it? 

A condition with at least two motor and one vocal tic, persisting for more than one year and starting in early childhood, most typically between age 5-7 years.

What is important, in your opinion, for people to know about young people with Tourette syndrome?

Tics are not dangerous, and, in most patients, tics decline with age. Only a minority of the patients do have coprolalia (e.g. swear words), although that is what usually is depicted in the media. There is a lot of focus on tics and Tourette syndrome on social media, although many of these influencers do not have tics at all as seen in Tourette syndrome.

Do you think that people should be more aware of this condition, which is also considered a neurological disability? If so, how and in which (professional, personal, social) areas?

Tourette syndrome is often underrecognized and underdiagnosed and the delay between onset of symptoms and diagnosis can be long. On the other hand, there is a substantial number of people who are not bothered by their tics at all and they do not need to seek medical attention.

Do you think young people tell their condition to other people in their community? Do they talk openly about that topic?

Most young people will probably be advised to talk about their condition in their community to prevent social misunderstandings. During the last year, there has been an enormous increase in people on social media, who claim to have tics or Tourette syndrome, but actually do have functional tic-like symptoms. For these influencers, Tourette syndrome has become a big part of their life and identity, and some young people with Tourette syndrome feel attracted to these influencers and feel to be a part of an interesting online community. It is very important to distinguish these functional tic- and Tourette-like behaviors from tics as seen in Tourette syndrome, since both the cause and the treatment are different.

Do you feel that young people feel supported and understood in their community in regards to their condition?

It is important that young people learn about their diagnosis, so both themselves and their surroundings will have a greater knowledge about their condition and how to cope with it in daily life. Most persons with tics feel understood in their community.

How does this disorder affect their lives and daily activities – what challenges do young people face?

Most patients with tics can live a very normal life despite their tics. Tics normally decline with age and many young people learn to suppress their tics in certain circumstances, so they are not bothered by their tics in daily activities.

Have the pandemic (and lockdown) affected and still affect their lives? If so, in what way?

In several countries in Europe, USA and Canada, a significant increase in young (mostly female) people with functional tic-like symptoms has been seen during the pandemic and lockdown. This might be due to psychosocial stress caused by lockdown and pandemic, and due to the increased focus on (functional) tics on social media.

It is very important for these young persons to be diagnosed correctly in order for them to get the right support and treatment. Regarding Tourette syndrome, tics often increase during stress. Hence, the pandemic may have increased tics in those people with Tourette syndrome who felt stressed. However, some children enjoyed home schooling and their tics may have decreased.

Do you believe that young people with Tourette syndrome are integrated into the school / work environment? Do you think they face any kind of discrimination based on their condition (in public places, at school / university, in the workplace)? If yes, please share how.

Most people with Tourette syndrome do not face any troubles integrating into the work/school environment.

Do you think that the government of your country, or the country in which you currently live, has a good response and strategy for the inclusion and integration of people with neurological disability? Why yes/no?

The government ensures people with neurological disabilities get the support they need.

What are your hopes, fears, or expectations for the future?

It is important to be aware of the condition Tourette syndrome that often is underdiagnosed and underrecognized. On the other hand, a wrong image of Tourette syndrome is often created on social media. It is important to diagnose Tourette syndrome correctly in order to help young people with tics in the right way.

On the occasion of Epilepsy Awareness Week from 18th till 24th of May and as a part of “Disability Awareness Campaign ”, SEWG (social equity working group) of AEGEE Europe has decided to contribute to making the marginalised voice of our society heard. We are presenting you the interview with Lorraine Lally, a young person with epilepsy, who is also a Co-chair of Youth Team in International Bureau for Epilepsy. 

If you need to define Epilepsy, how would you simply describe it?  

Epilepsy is the most common neurological condition. It is like an electrical storm in the brain and your brain is overloaded and restarts as a result of having a chain reaction which affects all the nerves in the body. Epilepsy can cause a disruption in the normal activity of the brain and it can involve behaviour that is uncontrolled and not remembered.

What is important, in your opinion, for people to know about young people with Epilepsy?

Be kind and respectful of their life with the condition. Don’t restrict them when having a seizure. Maintain and care for their head and try and prevent injury to the head. A young person with epilepsy may find it hard to talk about the condition. It is important to ask them about their own seizures and if there is anything that you can do to support them.  Seizures are very individual and the needs of each young person is different.  Some young people feel shame with epilepsy and they may have parents who discourage them from informing others of their epilepsy.  Having seizures is frightening for young people so reassure them that everything will be fine.

Do you think that people should be more aware of this disorder, which is also considered a neurological disability? If so, how and in which (professional, personal, social) areas?

Definitely should be considered a disability. Epilepsy should be considered a disability in all areas of society including public transport, employment, education and access to services.

As a person with epilepsy it took time to accept that I had a lifelong condition that was unpredictable and until this day it is still uncontrolled. There should be a human rights based approach in dealing with people with epilepsy and all disabilities. 

As a woman with epilepsy there are issues that I in fact as well feel are often underrepresented. Some of the young people like myself the seizure were worse once I started menstruating and self confidence is an issue. People should be more aware of the condition in all areas of society such as education, employment and social inclusion. The stigma surrounding epilepsy can limit the opportunities that are available to young people and it is a cruel reality on top of a neurological condition that we have no control over.

At times I speak with others who are visually impaired ,deaf,wheelchair bound and they feel for me with the epilepsy being uncontrolled and ask me how I manage the stress of living with the uncertainty.

Do you think young people tell their condition to people in their community? Do they talk openly about that topic?

No they do not speak openly they do not want to be limited or placed in a particular category in the community.  My mother told me as a child not to discuss the condition and not to mention it.  My mother wanted people to see my abilities and my personality, not my epilepsy.

As a young person you do not discuss the topic. I have been in contact with many young people who tell me they want good friends and they want a normal social life and both seem out of reach with epilepsy. I was bullied as a child and then I made good friends who were kind to me and showed me that I had nothing to be ashamed of with epilepsy. A part of me felt as if the epilepsy was a punishment for something I did not do. I had a problem with my brain and it was going to be there forever. The anger that you feel is common and the resentment for all the medical professionals who never really understand the social disadvantage.

Do you feel that young people feel supported and understood in their community given their condition?

The stigma around epilepsy is real. The fear is that no one will be your friend, invite you to the party,  no one will  love you, hold you, want you, and if they do like you how will they react to the epilepsy and they look at you and say it’s fine but they look terrified which I understand. If you add hospital visits to that it can be too much to explain and then you are forever labelled as the girl with epilepsy. 

There is a part of you as a young person that wants to pretend you don’t have a neurological condition and you want to stay on the dance floor for as long as you can with your friends. The impact of peer pressure is social and the move away from the family structure is all relevant to people not transitioning.  I know people with epilepsy who have been robbed while having a seizure and another person who had a seizure and then found that the young men in the room put the video online. The condition is not accepted and there is often a reaction that you cannot predict. The truth is that people only care about those with epilepsy if they are known to them.

How does this disorder affect their lives and daily activities – what challenges do young people face?

 Being in a relationship with another person, a loving and sexual relationship is an issue. Personally I have given a boyfriend a black eye. I get seizures in my sleep. Luckily as an Irish person we took humour from it with him bragging he was so good he caused a seizure. This is a challenge as a healthy sexual relationship is a basic need and often an area of worry and the concern for young people.

I have spoken with young men with epilepsy who sometimes have seizures after sex and ask if there is somewhere they can talk to someone. The fact is that my nocturnal seizures are beyond my control. At present we don’t sleep together in the same bed in my house but it was an area that had an impact.

Another friend of mine from another Eastern European State never told her husband about her epilepsy as her mother told her not to. She was 8 years seizure free and now they are trying to have a baby so she is on Sodium Valproate. She was asking me how to proceed and she is now changing medication and having seizures and trying to conceive.  She is 25 years old.  Personally I am self employed due to my epilepsy as my condition is not under control.  As a young person there are clear barriers to employment and to obtaining a job where there may be a medical assessment required.  There is a practice of putting some people under pressure and employers are sometimes cruel in their treatment of persons with epilepsy. The mental health issues from the side effects of medication and the social isolation are serious for young people. Many of the AEDs cause depression and anxiety so the young person is trying to move on and progress in society with all the other pressures and then finds they are overeating or depressed as well as having epilepsy. Neurologists have seen the research on the large numbers of young people struggling with depression and they often don’t explain the impact of the treatment fully to the young person.

Have the pandemic (and lockdown) affected and still affect their lives? If so, in what way?

 A massive increase in social isolation is very clear. We are currently doing online support group meetings and the attendance has increased 4 fold over Covid -19 /Pandemic.  The social stigma and shame that people feel is limiting their opportunities in having some social interaction.  There is a desperate loneliness for those living alone with epilepsy or even for a young person who is being cared for by family members.

The mental health issues that are a normal part of epilepsy and the side effects of the medication is made worse by the social limitations of lockdown.  I know many who have gone to the doctor for anti-anxiety meds and antidepressants. The social isolation and the stress of lockdown has made a lifelong condition worse. The lockdown has also meant that the consultations with the neurologist were on the phone or online and they were not able to conduct a neurological assessment then the medication reviews are limited by a lack of blood work as well.

Do you believe that young people with epilepsy are integrated into the school / work environment? Do you think they face any kind of discrimination based on their condition (in public places, at school / university, in the workplace)? If yes, please share how.

No If you leave home and go to University like I did, I ended up with a neurologist in Dublin after I collapsed in the library and a staff member took care of me. Then I ended up by chance with the 2nd best neurologist in Ireland. With the introduction of the GDPR regulations most States have to ask the person as an adult if they want to use the adult service. If they are stable and the medication is working they don’t use services.  

I believe that if I was not a self employed person that I would not be able to gain employment as a result of the epilepsy. I have assisted hundred of people with epilepsy with workplace discrimination and for others they cannot obtain an interview. The nature of epilepsy is that employers are nervous of injuries from seizures and the risks to others in the workplace. The excuse of medical examinations and the insurance issues are always raised in defence of not hiring someone.  Education was not easy. I did not inform those in the institutions that I had seizures, instead I collapsed in lecture halls and dealt with it afterwards. They always treated you differently after it and you were uncertain what to tell them.

Do you think that the government of your country, or the country in which you currently live, has a good response and strategy for the inclusion and integration of people with neurological disability? Why yes/no?

No, there is no real integration. The State takes a medical model approach to dealing with epilepsy. There are insurance issues with persons with epilepsy.

There is an issue with the training given to staff in schools to support a child who needs medication during school time. We are working on policies and the renewed policies on access for women with disabilities has given me hope that the situation will improve. The neurological situation in Ireland is appalling. We currently have 725 consultant vacancies so we have a shortage of consultants and neurologists.

The public system is disadvantaged and you can get access to. treatment and diagnostic equipment and tests if you have the money to pay privately for the access to services.  The current social policies are inadequate in providing services for persons with epilepsy.

What are your hopes, fears, or expectations for the future?

Hopes:

•        Supported integration in primary school and progressive educational opportunities for those from 5years to 23 years.

•        Employment opportunities supported by State employers and encouragement for the private companies to hire persons with epilepsy.

•        Equal access to medical services for all persons from birth to death and that those with the most need would be seen first within the health system.

Fears:

•        The cost would prevent proper access and  provision of educational and medical services.

•        That more adults would be socially isolated and denied the opportunity to enter the workplace.

•        That those with epilepsy would be discriminated against in obtaining education and training and therefore be a victim of a neurological condition that they cannot change. 

Expectations:

•        To respect human rights and to realise that human dignity should be respected at all times.

•        That others would learn and support those with epilepsy if they saw the stigma and the loneliness that we live with when having seizures.

•        That I will live a long life and see the world evolve and change to include and care for all persons equally with compassion and understanding.

Dr. Vasiliki Garopoulou M.Sc.’s., Ph.D., P.D. is an Adapted Physical Exercise & Sport Science Educator and Neurorehabilitation & Medical Exercise Specialist. She holds 2 Post-Doc degrees, 2 Postgraduate Diplomas from A.U.Th Neurosciences Medical School, 2 postgraduate – vocational training certificates abroad. She also has a PhD in the Laboratory of Developmental Medicine & Special Needs Education in collaboration with the 2nd Neurology Dept. of AHEPA – A.U.Th Medical School. Currently she is working on her 3rd Post-Doc research at the A.U.Th Medical School and serves as Scientific collaborator at the 1st Neurology Dept. of AHEPA and Greek Association of Alzheimer’s Disease and Related Disorders (Alzheimer Hellas). In this interview, she speaks about her experience withMultiple Sclerosis (MS). 

If you need to define Multiple Sclerosis (MS) as a disability, how would you simply describe it? (What is your definition for MS?)

MS can be described as a multidimensional disability affecting many aspects of our daily lives not only physical but also mental, psychological, emotional and social not that easily manageable but can surely be easier than other neurological conditions, with or without some kind of disability. Multiple sclerosis (MS) can be a very isolating disease. Losing the ability to walk has the potential to make those of us living with MS feel even more isolated. I know from personal experience that it’s incredibly difficult to accept when you need to start using a mobility aid like a cane, walker, or wheelchair.

When were you diagnosed, how did you feel (or your family) and how your life has changed from that moment forward?

Actually, I had a feeling that my diagnosis would be MS judging by the symptoms and the fact that I had already started studying and working with MS patients as a physical trainer at that point, although the realization of being a person with MS initially shocked me and then my family. My parents were devastated but overcame the initial shock and strong as they are, calmly stood by me and still are of course. The way my life changed from that point forward was unpredictable, as MS is unpredictable and affected me physically more than anything.

What is important, in your opinion, for people to know about you – young people with MS?

 When I was diagnosed I was an Olympic level athlete and on my journey for my academic career. My diagnosis was a really tough one and the prediction at that point in time, with limited (compared to today) scientific knowledge and medical treatment options ,was grim. Despite that I never gave up on my dreams and the goals I had set and kept pushing forward. The years to come where not easier but harder and my physical condition worsened, but I still kept moving forward. When you are young and determined as I was, you strive as long as you don’t give up!

Do you think that there should be more awareness for your disability, which is also considered a neurological disability? If so, how and in which areas (professional, personal, social)?

 People should be aware of all kinds of disability and reasons behind the disability, not especially for neurological derived ones and of course in every area of life. In a working environment being aware of one’s neurological disability can only bring ease to the individual because the management can better assign the proper tasks the individual can handle depending on the disability. Same goes on the individuals’ personal and social life. Awareness of one’s problem by the people around you can only be considered a benefit.

Do people around you know about your disability? As a young person do you talk openly about that (Do you prefer to tell them)? How did your disability influence your social life?

Well my disability is to an extent that I need to use an electric mobility scooter all day so its clearly visible to those around me that I have a disability but even if my physical condition was best I would still talk openly about my condition should a need arise, MS is a condition that people should be aware of and have knowledge about.

Do you feel supported and understood in your community in regard to your condition?

Truth be told I do not feel understood and supported from my community, starting from the families in the block or flats I live in, to the wider neighborhood up to the city and country I live in. In the building I currently live for example taking aside the discrimination I’m experiencing for my physical disability, there are practical issues that are not addressed. I am forced to enter the building from the garage door and then another internal door that is small and always double locked because the people in the building won’t allow me to make a ramp or even have a portable to ease my access to my house. One argument after another, I’m getting bullied all the time and ultimately I am forced to juggle my way into the building and that is but a small example of the real situation that escalates to the wider community.

How does MS affect your life and everyday activities – what are the challenges that you face?

One of the main symptoms of MS is the increased fatigue a patient has, so everyday activities become 5-7 times more tiring, limiting greatly what can actually be done throughout a single day. Another factor to be taken into consideration is the temperature sensitivity a patient has, getting hot increases greatly other symptoms whereas getting cold increases spasticity and involuntary muscle movement resulting in pain, fatigue, dizziness, short sight etc even if that means 2-3 degrees. As you can imagine those are just a few yet really important things to consider daily.

Has the pandemic (Covid-19 and quarantine) affected, and is still affecting your life? If yes, in what way?

To put it in a simple answer, yes, this whole situation has affected my life greatly. The fact that gyms, fitness centers, swimming pools are closed and going out of the house by itself has become tedious has made me narrow my physical exercise options to minimum. Also the high contagiousness of the virus limited greatly the number of people I interacted with making physical therapy really impossible and both exercise and physical therapy are crucial to my well-being.

Do you believe that you and young people in general are integrated enough into the school/ work environment? Do you face any type of discrimination based on your condition at public places, school/university, workplace, sports? If yes, please share in what way.

Unfortunately in the country I live in the discrimination is existant and people with any type of “different” features are stigmatized badly, becoming more and more traumatizing to young people, starting form the early years of school. Poor education in schools, prejudice and fear is reflected upon youngsters with any form of disability forcing them to feel cast outs of society. In workplaces both people with disabilities tend to hide their special condition in order to keep their jobs, making their everyday routines even harder, or altogether avoid finding a job due to fear of rejection and poor self esteem ,not to mention managements and supervisors got to as far as firing or mistreating people with disabilities. There is some kind of better understanding in sports with many clubs having disability-adjusted sports departments but don’t have as many athletes as they could due to all the reasons stated above,not to mention parents and legal guardians manipulating and exploiting all the benefits and success a person with disability might have.

Do you believe that the government of your country has a good response and strategy for the inclusion and integration of people with neurological disabilities?

Unfortunately only in the last 10 years has there been the public interest by the government and social care about people with neurological disabilities. Mostly in terms of financial benefits and a narrow range of social services. The healthcare system though is better organized and with doctors having the knowledge and the tools to work with patients, the situation looks better.

What are your hopes, fears, or expectations for the future?

My personal case regarding MS has been rough and with all odds against a “good” prediction but being  a logical and realistic person makes me both fear and hope simultaneously, I fear the very real possibility that my condition will get worse and I hope that this won’t happen as well because I do whatever is within by power to protect myself. I don’t stand idle and wait for things to happen that’s why I keep my spirit and my expectations up and try my best.

Do you have a personal philosophy that has helped you to move forward in tough times?

The most important is to never give up on your life and your life goals and keep on pressing forward. A diagnosis like MS shouldn’t clip your wings but you must adapt to the new situation and the new normality. Also, you need to take care of yourself and pay more attention to details, not only to maintain high levels of energy but ultimately a good quality of life. Living in Greece and using an electric mobility scooter, one of my greatest challenge is to move freely around my neighborhood and being able to perform everyday tasks like going shopping, not only because of the non-existent road and pavement accessibility but for the stores as well. Lastly, I didn’t let fear get the best of me. Without my wheelchair scooter, I never would have had the independence to live in my own home, earn my degrees, travel a lot, and marry Odysseus, the man of my dreams. We fell in love, got married in 2016, and have been living happily ever after. Odysseus has never known me to walk and wasn’t scared off by my wheelchair scooter. Here’s something we’ve talked about that’s important to remember: Likewise, he sees ME, not my scooter. Scooter is just what I need to move around better and live together a quality life despite my disease.

On the occasion of World Autism Awareness Day, the Social Equity Working Group of AEGEE Europe interviewed a kinesiologist (K) at Center for Autism, Zagreb, Croatia and a speech therapist (ST) at Special hospital for the protection of children with neurodevelopmental and motor disabilities, Croatia to learn more about the disability. 

If you need to define Autism as a disorder, how would you simply describe it?

K: Autism is a developmental disorder, which means a disorder that occurs at a certain period in the child’s development, often slowing down normal development.

ST: Autism would be characterized as a permanent disorder of primarily social communication and interaction.

What is important, in your opinion, for people to know about young people with Autism/Autism Spectrum Disorder (ASD)?

K: It is important for people to understand that people with autism understand the world around them differently and react that way. they are irrelevant to them and vice versa. They are not crazy or stupid they just have a different value system and priority.

ST: It is important to know that these are young people who have all the needs, requirements and desires as well as their peers, they just cannot express them in an adequate and usual way.

Do you think that people should be more aware of this disorder, which is also considered a neurological disability? If so, how and in which (professional, personal, social) areas?

K: Yes, it is absolutely necessary to include them with additional support in various areas, from education, local community, clubs to assisted employment. I would introduce compulsory volunteering for students.

ST: Certainly, the public should be made more aware of young people with autism in order to know how to properly approach them and to understand their needs.

Do you think young people tell their condition to people in their community? Do they talk openly about that topic?

K: Many do not know and cannot self-advocate. Their social life is mostly reduced to associations and socializing within the disorder. There is definitely a need for better education for all individuals in society with whom they come into contact: teachers in regular schools, doctors, coaches…

 ST: Absolutely that autism as a permanent disorder affects their position in society and they do not tell anyone about it, partly because they do not know how to express themselves, and partly because they do not expect to be understood. 

Do you feel that young people feel supported and understood in their community given their condition?

K: No, misunderstood and often segregated because of their “strange” behaviour. Unfortunately, deprived of basic rights such as treatment, education…

ST: I think they are poorly supported and understood in their community, but certainly better than 10, 20 years ago. 

How does this disorder affect their lives and daily activities – what challenges do young people face?

 K: They are mainly focused on families, associations (NGO working with them) and the school they attend.They are excluded from all general social activities.

 ST: Strongly affects their lives because they find it difficult to function in daily activities, not to mention permanent work.

Has the pandemic (and lockdown) affected and still affect their lives? If so, in what way?

K: Of course, as people with autism desperately need a daily routine to function well, many people are in regress due to the lack of activity they normally carry out which in a lockdown this was not possible.

ST: This covid situation has made their condition worse – they are more isolated than ever and their ability to go to therapies that help them function better in everyday situations has been reduced.

 Do you believe that they are integrated into the school / work environment? Do you think they face any kind of discrimination based on their condition (in public places, at school / university, in the workplace)? If yes, please share how.

 K: Yes, many are discriminated against due to lack of knowledge by the general population, because a lack of understanding of the disorder causes discomfort in people. Schools cannot cope with the difficulties of students, employers with special requirements of employees, coaches do not know how to include athletes… It turns out that it is easier for everyone to exclude this population.

ST: Recently, they have become more integrated into the school system, but still face discrimination in public places due to insufficient information of the population.

Do you think that the government of your country, or the country in which you currently live, has a good response and strategy for the inclusion and integration of people with neurological disability? Why yes/no?

K: Yes, the laws are well written but in practice they are often impossible to enforce.

ST: Our government does not have a good enough strategy. Let’s hope it works on it. 

What are your hopes, fears, or expectations for the future? 

K: I still hope that the future will be better for our “special” fellow citizens.

 ST: My fears are hopefully unjustified!