Why - Ekaterina Limónova - E-Book

Why E-Book

Ekaterina Limónova

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Beschreibung

Ekaterina Limonova, who pursued higher education and achieved professional success without even suspecting that her hearing ability was well below average, embarks on "Why," a journey through her life experiences, from her difficult childhood in the Soviet Union in the 1980s to her current life in Great Britain, where she was finally diagnosed with hearing loss, as well as one of her children. With her training and experience as a specialized speech therapist and therapeutic educator for hearing deficits, and what she has learned from her experiences, the author offers a unique and practical perspective on how to understand and help children with hearing deficits and other special educational needs. "Why" is an exciting and moving work that allows us to see the world from a different perspective, better understand the feelings of people with hearing deficits, and realize that no obstacle is insurmountable when there is motivation to achieve one's goals.

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Veröffentlichungsjahr: 2023

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Why

A book for everyone who is familiar with this topic: parents, guardians, teachers, professionals working with children with hearing loss or bilingual children.

— Ekaterina Limónova

© Author: Ekaterina Limónova

© Prologue: Tatiana Limónova

© Original title: Why

Edit © Medialuna Editorial www.medialunacom.es

Promotion, Public Relations and Digital Marketing: Medialuna

© Layout and cover design: Medialuna Editorial

© Front and back cover photography: Alexander Kudrjavtsev

© Flap photography: Sergey Prozvitskiy (2022)

eISBN: 978-84-127008-1-7

All rights reserved

Medialuna Editorial

Av. Asturias 44, 28050, Madrid

Tfno: 91 567 01 72

www.medialunacom.es

[email protected]

INDEX

FOREWORD

PROLOGUEBY TATIANA LIMONOVA

PART 1. THE STORY OF ONE GIRL

Why is that?

Childhood

Kindergarten

TV and reading

Doorbell

Music

Painting

Phone calls

Grandfather

Grandmother

Dad

Playtime at the yard and at home

Girls and boys

The countryside

School

Summer camps

University

Work

Moving and foreign languages

Marriages

Diagnosis

Hearing aids

Children

Mom

PART 2. STORIES ABOUT PARENTS

Adults and children

The “pathogenic mother” phenomenon

Expectations and reality

Smothering love

On love again: “Loving a child”

Family and psychosomatic upset of children

The family of a sick child. The crisis of finding out for the first time

Informing parents about a child’s diagnosis

Dear parents

Parents’ perception of a child’s diagnosis

The family’s adaptation to the child’s diagnosis

PART 3. ADVICE FOR PARENTS

How to become a competent parent

Alarm bells

Rules for communicating with a hearing-impaired child

The development of speech. Do you need a speech therapist?

Bilingual children

TV and electronic devices at an early age

On the importance of developing the child’s inquisitiveness

Punishments

How to prepare your child if they ever get lost

The birth of a brother or sister. How to help a child cope with jealousy?

Pathological habits. How to respond to them?

On bullying

What should parents do?

Difficulties of adolescence

Emotional parental burnout

PART 4. WHAT IF YOU ARE NO LONGER A CHILD?

Instead of an afterword

ACKNOWLEDGEMENTS

BIOGRAPHY

FOREWORD

The idea of this book …

Allow me to put that aside for now. Let us start with statistics.

Nowadays, more than five percent of people in the world live their lives with a degree of hearing loss. A lot of you will think that you don’t know any people like this, or that this is an exceedingly small figure which does not apply to you or your community in any way. However, according to the World Health Organization, by the year 2050, one in four people will have hearing loss to some extent. To put this into perspective: if you take forty people in your community (relatives, friends, employees, colleagues, students, etc.), this mean that ten people within that group will fall into this category. Now multiply these figures by two, three, or more. Your community may have more people with hearing loss than you think.

I hope you have the desire to read this book, instead of putting it back on the shelf or leaving it at the store. I wish for this book to help you look at the world from a distinct perspective and improve your understanding of the feelings of people with hearing loss.

People who live in urban areas not only have an busy way of life but are also surrounded by a constant elevated level of noise vibration. You will notice that if you are in a quiet place for a while, and later go out into the street, you will require a few minutes to adapt to the noise and the constant loud sounds. All of this is a colossal effort for the human brain that requires a large consumption of energy. What if, among all this noise, you still needed to grasp the sounds of words when talking to someone. How much of your energy would be spent on this ordinary process? You or those around you don’t need to move from a city to the countryside, but I want you to take yourself and the people you see in your daily life into consideration.

It is time for me to introduce myself. My name is Ekaterina, and I am 41 years old at the time of writing this book. I was born in the Soviet Union in 1980, although as I write now, I have not lived in Russia for more than 11 years. Before moving to the UK, I lived in Spain and Andorra. In 2015 I moved to England with my now ex-husband and children. In 2016, at the age of 36, I was diagnosed with moderate congenital sensorineural hearing loss, as was one of my sons, which I elaborate on later in the book. What you should know for now is that for 36 years of my life I lived with hearing loss, but without hearing aids, as I did not speculate on the subject. I graduated from an ordinary Russian school with good grades, received two higher educations in the specialties of an economist and a specialist in defectology[1] and Teacher of Deaf, and I am a certified sign language interpreter.

I also speak two foreign languages: Spanish and English. I am the mother of five children and have also gone through two divorces in my life. I have built a career as an accountant and economist in a large Russian pharmaceutical company. And, if you are reading this book, you will see that my current endeavor is to be a writer.

The idea of this book came to me while I was studying to work with children with disabilities. I realized that many books I have already read are based on theoretical research, and only a small part of them focus on practical scenarios. At best, they are based on the experience of working with children and adults that have hearing impairments (and even then, this is a small percentage).

There is no literature out in the world that would convey all the feelings of a hearing-impaired child: their doubts, fears, the development process, and their perception of the world. Nothing that allows you to, as they say, step into the shoes of the person who hears the world in a unique way.

There are statistical norms for children with special needs, but I am sure that they are not universal and cannot be applied to everyone. It is impossible to put barriers up for the child during their development by following these norms. Each person has their own perception of the world. There are no perfect or “normal” people. In my environment, there have been a couple of people who were diagnosed with deafness, or a high degree of myopia (like blindness), that still broke through the barriers that prevented their personal growth and development by following their desires, having strength of character and through the help of their loved ones.

I want to convey the idea that every person with such “defects” can develop, create, and bring something new and bright into this world.

Yes, it is possible that people with hearing loss may not be able to fly to space, but there are other wonderful professions and specializations out there. Everyone can build the life of their dreams. I really want people who are close to such a person to understand that this diagnosis is not a defect! This is not a problem that needs to be solved or worse, cause suffering. This is just a feature with which you can live a fulfilling and wonderful life.

The main external factor, which every human being needs, is the love and support of loved ones. People with disabilities, including hearing loss, are often looked down upon by society, which makes them feel isolated and helpless. Believe in them, and they will succeed and flourish.

I may not be able to answer all the possible questions in my book, but I really hope that at least some matters will be made clearer. I do not have many years of experience as a defectologist, but I have over 40 years of life experience as a person with hearing loss and this is 24 hours a day, 365 days a year. You will not find recommendations for hearing aids or cochlear implants in this book, but you will find my feelings, thoughts, and advice, which everyone is free to use at their own discretion. I ask for the reader to try and empathize with me. I urge you to make an internal transformation or to find the desire to change something around you. As I reveal myself to you, sometimes it may seem that everything is written in a highly emotional tone, but this is my life and I allow myself to feel what I feel. It may be unemotional for some, but as I have said, these are my feelings, and I experience them just as they are typed on these pages. I also want this book to be easy to read regardless of age, social status, or any other social stereotypes. Read, observe, and hopefully you will learn something about yourself or notice something important in your child’s behavior.

•The book consists of four parts:

•In the first part, I will tell my life story.

•In the second part, there will be stories about parents with special children, the stages of diagnosis, acceptance and stereotypes of behavior.

•In the third part, you will find answers to questions that have arisen earlier.

•In the fourth part, we will talk about adults with hearing loss.

Well, let us start then.

[1] defectologyn. in Russian psychology, the field concerned with the education of children with sensory, physical, cognitive, or neurological impairment. It is roughly equivalent to special education and school psychology in the United States. It is based on the view that the primary problem of a disability is not the organic impairment itself but its social implications. [originally defined by Lev Vygotsky]. APA Dictionary of Psychology.

PROLOGUE

–– Tatiana Limónova

The universal cooing and laughing of a baby’s attempt at language added up to “Mama” as the first meaningful word that came out of my mouth. In all honesty, I do not think I could ever thank my mom enough for everything that she has done for me, regarding my academic as well as overall development, which is why my chapter in her book is dedicated to no other than her. It is strange that a sentiment as strong as this one can be summed up in five simple words:

“Thank you very much, Mom.”

And perhaps an even stronger sentiment:

“I love you.”

But that discussion is for a later time.

I am, and have always been, a very inquisitive person. According to my mom, I started talking at a very early age. As a child I spoke coherently, in full sentences. This is hardly surprising: from my knowledge of linguistics, I am aware that children have an innate ability for expressing themselves in a grammatically correct way as soon as they contact their unconscious ability to express and process language. However, I did not speak perfectly. I would often replace the /xj/ sound, as it is referred to in the phonetic alphabet with the /f/ sound. Meaning words such as “хомяк” (homjak) – hamster in Russian – became “фомяк” (fomjak). The reason for this was never clear as I did not have any issues with other pronunciation: my mom often suggests that I was doing it for fun and it was not a pronunciation problem. I suppose children do not put much meaning to something as complex as language. Nonetheless, it eventually disappeared as I got older and “фомяк” became a distant memory of the past. It is therefore of utmost importance to highlight the grading attributed to the overall tracking of a child’s development: average, below average and above average. This grading system is not enough to depict every child’s individuality, let alone focus on the cause rather than the effect. Children are a lot more complex than we deem them to be. The yearning to fit into the “norm” is oftentimes dangerous and stressful for a child. It is very common in Russia to be checked by a speech therapist before entering kindergarten. Despite my earlier “errors” that would have required me to attend sessions with a professional, my report stated that “my speech development surpassed the norm” … I wonder what they would have said if I had been observed at the stage of my earlier speech “inaccuracy”.

I should also mention that I come from a Russian speaking family; both of my parents are native Russian speakers who put an emphasis on the importance of speaking Russian even as we moved across the world, something I am extremely grateful for as it allows me to connect with my roots and communicate with the rest of my family, who live in Russia to this day. When I was 15, my mom was diagnosed with hearing loss, which could be another factor in my early pronunciation errors (note here the importance of cause rather than effect). Of course, I do not blame my mom in the slightest for my insignificant speech errors as a child; it had nothing to do with that. What should be important for professionals to note is that hearing a clear pronunciation of a language’s sounds is key to the overall speech development of a child. Children learn from the speakers that surround them, who they initially imitate. As a child spends more time in kindergarten and school than they do at home during those early years, it is crucial for teachers to have clear communication with children and develop their hearing to encompass all the phonetic units of one language. This has been proven by various studies, but that is not what I aim to focus on in this chapter. A baby’s ear as well as mind is open to all the sounds that exist in the IPA (International Phonetic Alphabet) and it is only when a child starts concentrating on one language, that they may lose the ability to imitate another language’s sounds. For instance, a native English adult may find it extremely challenging to reproduce a rolled r sound /r/, as their speech organs have not been trained to do so.

From there, my passion for literature is another attribute I must thank my mom for. We would spend a lot of time reading a variety of classical Russian literature, as well as poetry. At first, I would only memorize the last word of each stanza. Not long after that, I was reciting entire poems in front of my whole family. In fact, it became a very popular form of entertainment at the dinner table to commemorate special occasions. Nowadays I engage in casual poetry writing in three of the languages that I know and enjoy writing in – no hard feelings French and Catalan! The part that interests me here is a child’s ability to memorize and use that information. In fact, a two-year-old child learns around 200-300 words per day. However, I do not want to go into the technicalities of this process in this chapter, as that certainly requires a whole book. What’s interesting about this fact is that the human brain (which often gets compared to a complex computer system in science, perhaps because we do not have the language to explain its function without relating it to something we ourselves have created) has a capacity of 2.5 petabytes. There is around a million gigabytes per petabyte. To me, that is an incomprehensible amount of space that I cannot relate to anything. How much of that space is occupied by the language or languages we know?

On the topic of memory, I suppose developing this skill from an early age allowed me to engage with complex language as well as different languages. When I was just two years old, I went to my first English group lessons. They were not anything serious, but they were also not pointless. I remember going to a lady’s apartment and playing with other children as she asked us what different items would be called in English. Ironically, that was the first time I thought I was awful at rhyming, because when I was asked to rhyme something with my name, Tatiana, I could not produce anything that sounded good or rhymed. I felt extremely frustrated when my teacher suggested banana, which made me feel rather embarrassed about the situation. At the time, all my brain could think of were words in Russian; I guess I had not made that link with English yet. Let’s see if I can generate some rhymes for Tatiana now: bandana, savannah, Ghana, Indiana … Okay that’s not too bad, the link is there now! What is important to highlight here is that I now had two words to describe objects that I was familiar with. Funnily enough I memorized the items I disliked more or was more passionate about at a much quicker rate than anything else … Porridge was one of them, but I will leave it to you to decide which category that falls into.

Another activity that played a key role in the development of my memory, as well as hearing, was music. I started playing the piano when I was six years old. Well, not really playing, as I remember that during my first few lessons I did not even get to touch a single key. I walked into the square classroom where I sat in front of the piano, with my bellybutton drawing a vertical line down the middle of the black instrument. The teacher shut the piano and gave me two ping pong balls. To my disappointment, we spent the next lessons learning how to hold your hands without playing a single melody. I would hold the ping pong balls in the palm of my hand without squeezing them too hard or too little, as they would fall out, and pretended to play the shut piano until the teacher thought I was ready. I am certain I cried once I came out of that lesson. But I did not give up thanks to the encouragement from my mom and went back in a few days. After a few months of playing, I would say that I got rather good and even got to play in the music school’s recital the following year, being the youngest member to be allowed to do so. I stopped playing the piano during my teens, but I have recently picked it up again and I am extremely happy to have done so.

Fast forward to my first few years at school. I was extremely lucky to have a mom that believed in me and challenged me academically, meaning that I skipped first grade and went straight into second. The hardest skill for me to grasp at school was that of summarizing. Being able to sum up a complex story and focus on the main ideas rather than minor details was something that took me over a few months to understand, as I assume is the case for most children. I would recall very well that the character has curly hair and wore a blue dress, but I did not understand that most of that information was irrelevant when giving a summary. In Russia, being able to summarize and retell a story played a significant role from second grade. I will never forget the time when my whole class was set a book to read over the holidays (Chipolino) and most of the class had only read the first chapter and did not venture any further. I was amongst those students as I did not find that book particularly engaging. The teacher asked each of us to recount the summary of our favorite chapter … Not surprisingly, most students’ favorite chapter was the first one and so was mine. My surname, starting with L, was in the middle of the register, which was arranged in alphabetical order. So, by the time the teacher got to me, I had to be creative when explaining why the first chapter was my favorite. I recall saying something along the lines of: “The first chapter was extremely engaging and compelled me to read the rest of the book.” Safe to say, I got away with it. I later found the book in my toy box when I was cleaning out some old childhood possessions.

Following a few years of attending a school in Russia, my family’s life took a radical turn in 2010. I was only nine when we moved to a different country: Spain, more specifically, Catalonia. Having no previous knowledge of the language was a daily struggle. Although, thanks to the development of my memory from a young age, I found myself memorizing vocabulary very quickly and building more links between objects and their different names. Perhaps the most interesting story to highlight from my education journey in Girona was the way I would take the weekly tests that were set to my class. I did not have the linguistic level to grasp the concepts we were being tested on, such as religion, philosophy, or math, which were all taught in Catalan. However, that did not stop me from always attaining some of the highest marks in the class. I remember memorizing entire texts that our teacher prompted us we would be tested on and associating the words in the questions with the words from the texts that I had memorized. It was certainly tough, but I always wanted to do well. Perhaps because I did not feel included as an immigrant, which always made me feel like I had to work twice as hard; because I was not born there, I had to prove that I belonged. I suppose this is also great proof of the complete failure of tests and exams at showcasing someone’s knowledge, because if anyone asked me right now about any of the topics that I studied during that time, I would not remember a thing! This also caused me to develop a very negative relationship with revision, and from that point onwards I avoided revising as much as possible.

After a few months of living in Catalonia my family and I moved to Andorra, which is a very interesting country because there are three languages with which students engage during their primary and secondary education: Catalan, the official language, but also Spanish and French. This is where I first started learning French and truly noticed that I was fluent in Catalan, as I was finally able to understand what my peers were saying to me, as well as gossiping with my newly found friends during breaktime. The epitome of using a language, am I right? The education system of this public school differed greatly from my previous experience. Here some topics within a subject, such as Science or Geography for instance, were taught in Catalan and some were taught in French. I remember learning about cloud formation in Catalan and the reproductive system in French. This was certainly an interesting approach, but those were the years that I felt most confident speaking in either of the two languages. Spanish, on the other hand, was neglected until students joined secondary school, so I did not experience it at this time. Looking back at my time at this school, I can say that this was probably the best academic period of my life.

French could have been a tricky language for me from the start. Every student in my class had already been learning the language for years and some even spoke it at home. But somehow, I managed to absorb everything like a sponge. In my last year at primary school, I participated in a French poetry recital and won second place in the whole of Andorra. This is quite a prestigious position for someone like me, since most of the winners came from the French education system in Andorra, where everything is taught in French. My win would have been three to four years after I started learning French.

My parents thought it would be best for me to join a more “international” school to complete my secondary education, which meant another radical systematic change. I write “international” in quotation marks because a lot of education centers perceive themselves as better than others when they have this title this in their name. But I do not believe in a hierarchy within the education system, because most of the time, it is simply not the case. In this school, also located in Andorra, the main language was Spanish, but many of the subjects such as Geography or Science were now taught in English. To be totally honest, I was completely lost in terms of grasping ideas at that point and I had a very difficult time at this school. A big part of my unhappiness at this time was due to the constant transitions, which did not allow me to remain friends with people I had met previously in my education. Of course, I was still a very hard-working student that got good grades, but I did not have the motivation to do many other things a person my age would be interested in. This was also when I hit puberty, so the addition of raging hormones to the cocktail that was already brewing in my head certainly did not help me at all. I would find it very difficult to memorize simple concepts such as dates or important events and I certainly did not understand the role of mitochondria in animal cells! The links that had been forming inside my head did not allow me to fully interact with such abstract and unreachable concepts, but I did not give up and made it through the next few years at this school as one of the top students.

These scenarios make me sound like an extremely isolated and lonely human being, but that really isn’t the case. Nearly every summer, my parents spoilt me with the opportunity to go to international, English-language learning summer camps with many students from across the world. I had an absolute blast during those weeks. As well as having English lessons, we would go out to different activities such as go-karting, paint-ball, the cinema or playing “capture the flag”. I have never in my life bonded with people so intensely. I met people who truly understood me and were in the same boat as me, despite our background differences. We yearned to learn about each other’s cultures and meet people from all over the world. It was great to see everyone come together and try to communicate in the way us humans truly should: through gestures, intonation, and a true desire to listen to each other and connect. In fact, I stay in touch with some of the friends I made there to this day, and it is extremely encouraging to know that there are places in the world where I can travel to, to meet up with a childhood friend who can show me around.

At age 15, the opportunity to study in England rose before me. At this point I was intensely bullied at school, so I jumped at the opportunity. Now that the language barrier between myself and my classmates was no longer an issue, it became clear that I still did not belong with them. Most of my classmates were not interested in studying and were extremely disruptive, which did not mix well with my learning difficulties, as well as my eagerness to learn. Bearing all of this in mind, who would say no to going to study somewhere else at the age of 15, especially the UK, regarded as having one of the most prestigious education systems in the world? I was presented with five private boarding school as possible options, as my family wasn’t considering moving to the UK at the time. It all happened very quickly: within a few weeks I took the entry exams, which I must admit were extremely challenging as my level of English was far from perfect, despite the fact I was studying at an “international” school. Luckily, I passed them all and was invited to be shown around all the schools with my family.

I arrived in the UK for the first time and stayed in London with my family. There was a lot going on in the bustling city, which perfectly reflected what was going on inside my head. So many new noises, smells and faces! Everything was extremely different to what I was used to. The next few days felt like something out of a movie, as my parents and I took off to visit a different school every day in the black carriage that was, in fact, a van. I instantly fell in love with the schools I was visiting. The libraries, the facilities, the school meals! Everything was truly amazing. I hate to bring up such a cliché, but a lot of them were very reminiscent of the school in a popular wizarding book series. But time was ticking, and I had to make a choice fast, so without the influence of my parents I decided on the school that I thought would fit me best. I was thrilled. Next year, I was going to study in England!

The following academic year came around fast, and it seemed as if I had to move into my new boarding house in the blink of an eye. I was very anxious and nervous, and the first few months were very challenging as I barely understood what people were saying, having not been exposed to British slang before. It is safe to say that I barely made any friends that year and felt very homesick. My family ended up moving to the UK that same year and even though they lived ten minutes away from the school, the establishment was extremely adamant about not letting me go home as they wanted my parents to keep paying to boarding tuition fee. However, I was very aware that this was a huge opportunity for me, and I did not want to disappoint my family in the slightest. I was amongst the first students to take their GCSEs, but to me, these exams were much more than simple qualifications.

I had barely any knowledge of science as separate institutions (Biology, Physics and Chemistry). Moreover, subjects like Geography, Design and Technology, English Language and English Literature were all new to me, as was the previously conceived knowledge that other students already had. I worked extremely hard that year, trying to get up to speed with the rest of my peers. I put my memory skills into action once again, despite dreading them. I suppose it was harder for me and other bilingual students compared to my native peers because they were familiar with all the terms being used in these subjects, international students were not. There was no help on behalf of the school to offer extra support to those students that were not necessarily failing, but were struggling to understand certain topics. Despite all the hurdles, I ended up being awarded an academic prize in the spring term of that year (something that was only awarded to five students my age, and as there was a total of 500 students to choose from, it was a rather big deal). In hindsight I probably put too much pressure on myself. The only subjects I found easy that year were Spanish and French, which thankfully I had been preparing for since I was ten. I had some level of advantage with those subjects, which later enabled me to take my Spanish GCSE and A-level earlier than normal, which I passed with flying colors, receiving an A* at A-level, which was a great accomplishment for me. Although GCSEs are not that important in the grand scheme of things, I worked extremely hard and did not get anything below a B in all my subjects.

I probably could have done the same with French, but the way languages are taught in the UK education system is not great, so I lost a lot of my linguistic ability as teachers forced me to translate. I couldn’t connect in my brain that “chat” was “cat” in English … I knew that “chat” was a domesticated feline animal when I was speaking in French, why do I need to know what “chat” is in English? I have been speaking French since I was around 11 or 12 and have always been aware that translating is a completely different skill to speaking a language, especially on a multilingual level. So, for professionals to try and meddle with the system I had been building within my brain for years felt extremely discouraging. I can speak French and even though I cannot translate “parfois” to English, I can use it in a sentence perfectly, which means I use a lot less anglicisms and instead employ a more appropriate use of language than someone who translates from English to French. But the UK education system as a whole is far from being able to understand and adapt to the individualities of each student, so I do not blame my teachers for the way I was taught.

My years studying in the UK were extremely challenging. I was at that age where all I wanted to do was fit in and did anything to feel accepted. I admittedly went “off the rails”, which looking back on that time now, I can only imagine how difficult it must have been for my family and I do not think I can ever make it up to them. Nonetheless, I refocused within my last years at school during my A-levels, where I was taking French, Art, and Biology. This was interesting combination, as before I realized how science would be taught at my school, I wanted to go into medicine. My decision quickly changed as soon as I was presented with A-level Chemistry, which I quickly dropped as I realized that it was too complex for me – this was a language I would never understand. Even though I wanted to switch from Biology to beginners-level Italian at A-level, my school did not allow me to do so three months into the course, despite my terrible grasp of Biology at that point and also because my teachers didn’t believe I could catch up with the work they had done in Italian so far. Once again, I felt highly discouraged. Nonetheless, I finished my A-levels, receiving an A in French, a D2 in my Pre-U art course, and a D in Biology, which is still a pass, so I do not beat myself up about it. Funnily enough, now I now have an avid interest in biology and chemistry, especially mycology, so turns out I always understood the language, it just was not presented in a way that I found engaging, just like my story about Chipolino earlier on.

So, where am I now in the book of my life? It is safe to say that languages are still the main chapter of my life and probably always will be. I went on to study Modern Languages (Spanish and Catalan) at the University of Birmingham, where I am currently partaking in my year abroad in Spain, which is part of their language learning programme. I have finalized my fourth-year studies in Catalan with honors at the university two years early, which allows me to