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BREAKING TABOOS

This publication, featuring testimonies of people with disabilities, is the first of its kind to bring attention to intimate relationships and parenting in the context of Albanian society.

As such, the publication aims to bring into focus the unspoken topic of sexuality, intimate relationships and parenting of people with disabilities. The topic is still considered taboo in Albanian society due to ingrained perceptions that people with disabilities are weak, infantilized and considered asexual by the rest of the population.

"I dreamt a lot of having a child and I never believed that one day it would really happen"

ELIDA ÇELA

Elida Çela is from Elbasan and, for almost 4 years, she has been working as a social worker in three different schools in the rural areas of Elbasan. She travels many kilometers every day to get to her workplace. For Elida, work is a pleasure, despite the countless challenges she faces. To have this job, she had to make continuous efforts for many years, but now she feels happy and motivated to work in her profession.

  • Read Elida's full story

    Elida was born in 1986 in a village in Pogradec. Since she was a baby, her parents realized that something was bothering her. She would not reach out to pick up objects or toys when her parents gave them to her to play with. After successive visits, ophthalmologists determined that Elida could not see, meaning she had been born blind. Elida completed her bachelor's degree in social work" at the "Aleksandër Xhuvani" University of Elbasan, and her master's degree in the field of social services administration.

    Upon completing her university studies, Elida began looking for a job. She became active at the Association of Blind People in Elbasan, where she also led a project that focused on the rights and socialization of women and girls with visual disabilities. After 6 years, in January 2021 she was finally offered a job as a social worker in three schools, in order to provide services to a designated number of students.

    She met her husband 20 years ago, when he worked as support staff at a camp organized specifically for people with disabilities. At that time, Elida had never even thought that a relationship could grow with him, because as she says: “I never thought that person would one day become my husband.”.

    Years passed and Elida met again with the person who would become her future husband. “We had not seen each other for a long time and, by chance, we became friends on social media. In 2021 we started communicating together. He invited me for coffee and it seemed a little surprising to me, since we had not met for years and I had no information about him. We met and he told me that his life had taken a different course, different from what I knew about him. I was waiting for him to tell me the purpose of the coffee invitation, but that day he did not tell me anything. Then, for several months, we did not meet again, despite his frequent invitations.

    It seemed difficult to accept, in fact, knowing the prevailing mentality towards people with disabilities, especially when it came to creating a family. At that time, I continued to attend a religious institution and a few times, he came there and we greeted each other briefly. When I talked to my close friends and asked them for their opinion, one of them said to me: “Why not? You should give yourself a chance.” I took her suggestion and agreed to go out with him. From that time on, our dates began very frequent, until the moment came when he confessed his love for me. He seemed confident, determined and clear in everything he said. My insecurities were numerous: is he as confident as he looks to have a visually impaired woman by his side? What about his family's reaction? Prejudices... Of course, my family would also have their doubts about this relationship.”

    Love challenged all the doubts that Elida had. The respective families, though not easy to accept, respected and welcomed the couple’s decision. Elida recalls the first introduction to her husband's family: “The first introduction to my husband's family was a little awkward. Knowing Albanian culture, I thought that it could not be so easy for a family to accept someone with disabilities, especially if you were a woman. I cannot say that my husband's family did not have prejudices towards my disability, but I am honest to say that I felt valued and they were careful in every word and action towards me.”

    After the crowning of their love with marriage, Elida experienced the most beautiful and important moment of her life. In December 2022 their son, Adior was born. She sees this moment as the realization of her greatest dream: “It is the most beautiful status I have: the status of a mother! I had dreamt a lot of having a child and the more the years passed by, the more this dream seemed to fade away. I feel blessed and fulfilled in every aspect of life now.”. She says that she was very afraid during her pregnancy, if she would be able to raise her son properly, but thanks to the help of her husband and her mother, she has done the best so far. Elida does not forget to express her greatest gratitude to her mother: “I am extremely grateful and thankful to my mother.”

    Her family’s support is essential, especially due to the lack of accessibility in transportation and infrastructure for people with visual impairments to move independently in the city and in the community.

    Elida’s happiness is occasionally sprinkled with doses of prejudice that fall on her head, as others whisper in her ear: “Being a parent with visual impairments also means facing challenges and prejudices. What no longer surprises me is the skepticism of people on the street when they ask my mother: ‘Your daughter’s son? Oh, really! I saw her one day holding him in her arms and I was afraid she would drop him’...It is unfortunate that today's society has a significant lack of information about people with disabilities and parenting.”

    As she enjoys Adior's sweet scent and caresses his beautiful hair, she does not forget to share one more piece of advice for all people with disabilities: “Insist more and do not stop working to fulfil your wishes and dreams. We have equal rights not only to be educated and employed, but also to have a partner, have children and create a family as we wish.”

"Lack of accessibility to information on sexual and reproductive health and rights has violated our privacy"

KLISMAN IBRAHIMI

Klisman Ibrahimi is from the city of Tirana and has been working for many years at the Albanian National Association for People that do not hear, in the position of trainer and researcher of Albanian sign language. He has a long experience working with this organization, but also in the community. He is known as the trainer of the first group of instructors and interpreters of Albanian sign language and is currently part of the program of research and enrichment of the Albanian sign language vocabulary. Klisman was born with hearing problems, but this has not prevented him from working and enjoying the beautiful opportunities that life gives him.

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    In fact, for years, he has managed to create a healthy love relationship with Lidia and together they have two children, a boy and a girl. He met Lidia in the premises of the Association where Klisman works. Initially, they were just friends sharing the same challenges and difficulties that they faced in everyday life. Then, gradually this friendship turned into love and today they live happily together. Klisman says that he was very impressed by Lidia's sincerity and expressive eyes and realized that his life had no meaning without her smile and warmth. Since both have hearing disabilities, they understand and support each other at every step. Their families have also supported this relationship, because as Klisman says, "both our families have experience with the presence of people who cannot hear and both families have agreed with our relationship and we have not encountered any objections, because they understand that we love each other and this makes them happy." The families not only did not prejudice or oppose their relationship, but offered unsparing support at every step of their relationship. Their love has overcome many challenges, because the Albanian reality does not offer the necessary opportunities for the full inclusion of people with hearing disabilities. There are not enough sign language interpreters and the costs of their services are not covered by the state in important situations of daily life when they need to receive essential services. The same applies to other forms of information accessibility, such as printed materials in plain language or subtitles in videos. This means that family members often act as intermediaries between them and the institutions to obtain the necessary information, but resulting in a lack of professionalism and violation of privacy.

    Thus, Klismani claims all his difficult experience in relation to the lack of accessibility to information even for deeply private aspects of life, such as sexual relations, reproduction and family planning. According to him, “It was very difficult to obtain information about sexual and reproductive health. When Lidia was pregnant, we went to the doctor always accompanied by Lidia's mother. She helped us with interpretation throughout all the check-ups that Lidia had during her pregnancy. The same situation applies for other services related to sexual and reproductive health, family planning, etc.”

    Klisman has strongly felt the weight of the lack of privacy, especially during medical visits, where according to him, “the feeling that you are with your family there is a problem, because you don't feel good when your family hears your personal things. If there was a sign language interpreter available, there would be privacy for us too. Accessibility to information and accessible formats are not present in our country, which means that we, people with hearing disabilities, do not have essential information about our health and our bodies.”

    In addition to the challenges of everyday life, their lives also have many beautiful moments. The time they spend with their children is incomparable to anything else. Klisman says that children are his greatest happiness. Speaking about his experience of becoming a parent for the first time, he says: “When I became a parent for the first time, I was very happy and was so emotional like never before. Along with the joy I felt, I was also very afraid. I was very worried, as me not hearing would mean that I would not be able to help my child when he cried, I would not be able to take care of him properly. But my and Lidia’s parents have helped us a lot. And although both of my children are deaf, this is not a problem for us and I am happy, because we can speak in sign language with our children.”

    Klisman also addresses a message to all people with disabilities, especially those with hearing disability: “I am very happy to have my family and I hope that many others will have my luck. It is the right of all people who do not hear to create their own family.”

When love triumphs over life's challenges!

KLINTON NDRECA

Klinton Ndreca was born in Puka, on January 29, 1986, into a large family. He has four brothers and two sisters. In 1999, with the aim of securing a better life, his family immigrated to Greece. In Greece, Clinton began to do some of the most difficult jobs, until after many ups and downs, he managed to become a construction entrepreneur, where he worked hard to realize his dreams and have a peaceful life, with the necessary comforts to live.

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    At the age of 25, guided by the love for his roots, he decided to return to Albania and build his life in Kurbin, where he currently lives.

    In July 2013, two years after returning to live in his homeland, fate coincidentally brought him face to face with the person who would become the most precious person to him, his future wife, Ida. Clinton himself recalls that meeting: “The moment I saw Ida, my idea of ​​starting a family was reinforced even more. She was a tall, elegant, beautiful girl, with green eyes, with a sweet and simple smile. There I said to myself, Ida will be my life partner. For both of us, it was love at first sight. Then we got in touch and after several meetings, we got together and lived together for about a year. We built dreams for our lives and decided to get married.” On August 10, 2014, they had their wedding ceremony and were very happy and enthusiastic about the beautiful life that awaited the two lovers. But life has its surprises, often sad and unimaginable to the human mind. While Clinton was enjoying the sweet fruits of many years of hard work as a construction entrepreneur and, at the same time, living the happiest days of his life as a newlywed, a car accident shattered everything. It was the afternoon of September 18, 2014, the day the world collapsed before his eyes and his life took a completely different direction, a direction he could not have imagined. Clinton himself describes those moments, which were the most difficult of his life: “We were living very happy days together, until that black day, when just a month after the wedding, I unfortunately suffered serious injuries, after a car accident.

    We spent a year in hospitals, both at home and abroad. When I was in the hospital in Greece, all my dreams were shattered, as the doctors told me that I would remain a quadriplegic for the rest of my life, a wheelchair user. I didn’t know what it meant to live in a wheelchair, I felt different from others, I felt isolated and closed to myself. I thought everyone was looking at me. I felt like they were looking at me with contempt and I didn’t want to leave the house at all. A lot of suffering for my soul. But where there is love, there is hope.”

    Ida stood by him every second and in every hospital and place he went for treatment. Not for a moment was she afraid of what awaited them, instead she encouraged and loved Clinton, turning her pain into strength to move forward. Ida’s family didn’t have any prejudices about their daughter’s decision, but they felt very sad about what happened to Clinton and tried to be close to him in every way. The young people's love triumphed over this difficult phase, because, as Clinton points out: "Thanks to Ida's determination to continue life together, I began to come to terms with my new condition. Even though we both knew that I would always be a disabled person and a wheelchair user, we decided to have a child.”

    Their love and strong will were not enough. Due to the injury from the accident, Clinton could not have children. This was another severe test for him. Although he had a regular sex life, his dream was not coming true and he felt spiritually dead. But God is great, says Clinton, because “after four years, with the help of God and the support of the medical staff at a private hospital in Tirana, through the IVF procedure, we had a child. Our son, Joen, was born. We named him that because it had a special meaning. Joen means “gift from God.” It was an extraordinary experience. We both felt like we were reborn. We forgot everything bad that had happened to us.”

    The couple would like to have more children in the future. But the process in the private sector is very expensive and they cannot afford it. Clinton and Ida hope to have at least one more child together through the IVF procedure, but this time in public health institutions.

    Joen is very similar in character to his father and is now his closest friend, who talks to him about everything. When Joen was little, Clinton was happy, but one thought occupied his entire being as he looked into his son's eyes: "I have suffered a lot about the fact how my son will react when he grows up and understands that his father uses a wheelchair and that he cannot walk or move on his own. I have tried and continue to try to explain to him what happened to me. With love and dedication, I believe that I have succeeded in some way, so that my son does not feel bad because of my condition, but is proud to have fighting parents, who, despite the challenges and paths that life has taken them, never gave up."

    Joen fills Ida and Clinton's lives with light and meaning. However, for Clinton, it is difficult to be a parent with disabilities and in his daily life, he feels the heavy weight of the disabilities that Albanian society and environment offer. According to him, "being a parent with disabilities is both a beautiful feeling and a difficult one, as you face many challenges. I have always been troubled by the part of how I will be able to manage to raise a happy and healthy child".

    Today, 10 years after the accident, he and Ida, only thanks to their perseverance, have realized many dreams. They have managed to open their family business and feel equal in society. They are an example of how love and joint effort overcome even the most furious waves of life.

Albanian doctors had no idea how a woman with disabilities could give birth to a child

KRISTIANA LEE

Kristiana Lee is a 29-year-old young woman who works as a lawyer in a subordinate institution of the Municipality of Tirana. Since 2022, she has been married to Teo from South Korea and the fruit of their love is a 21-month-old son.

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    She has been living with a disability for 22 years. Although she was born a healthy child, her life took a sudden turn when she started the first grade of school. Doctors in Albania diagnosed her with acute leukemia. Kristiana was taken for treatment in Pisa, Italy, by a dear friend of her father.

    After several months of chemotherapy sessions, Kristiana survived from the serious illness and joy returned to the family. But, according to doctors, the chemotherapy had had side effects and Kristiana would be in a wheelchair. She never stopped trying to move forward. After completing the primary school level at “Emin Duraku”, she continued her studies at the “Asim Vokshi” foreign language high school, because she had a great passion for learning about foreign cultures, never knowing that this passion would also be shared with her future husband. Today, she speaks six foreign languages: English, Korean, Italian, Spanish, Turkish and German.

    During the years 2014-2019, she completed her law studies and in 2021 she started working as a legal affairs specialist in a social service institution.

    Her love story begins during the pandemic, the beginning of 2020. Kristiana, driven by her passion for learning foreign languages ​​and cultures, decided to register in an online course platform, where lecture exchanges were held for learning different languages. She enrolled in a Korean language course because she liked the culture, especially after listening to the songs and TV series. She agreed to give online English lessons, while the person across the computer would give her Korean lessons. Her teacher was Teo, and every day they would go beyond the one-hour lesson they had planned, because their conversations were endless. The two would talk to each other about everything, even personal matters. He showed interest to know more about disabilities, to consider how to behave, because the information he had was superficial.

    After the easing of the measures against Covid, in February 2021, he traveled to Albania for the first time. He stayed with Christiana for three weeks and the direct meeting strengthened their love bond even more. This period was very beautiful for the young couple, but also very difficult, especially for Christiana. Among other things, she says: “Prejudices, unfortunately, have been numerous from the beginning. Prejudices were such as: why should a “healthy” person be in a relationship with someone with disabilities? Why did a girl with disabilities agree to be in a relationship with a “healthy” boy knowing that it would make his life difficult? etc. It was really very difficult to get through, because almost everyone was against the relationship, but the love and persistence of both of us to continue this relationship triumphed, despite the opinions of others.”

    Christiana’s family and relatives were more against it, compared to Teo’s parents, who welcomed their son’s decision to marry an Albanian girl with disabilities, because according to them, what happened to Christiana in childhood could happen to anyone and if their son was happy, this was reason enough to overcome all other difficulties.

    In May 2022, the second anniversary of their relationship, they crowned their love with marriage.

    The decision to have a child and especially the moment she became pregnant was accompanied by a lot of anxiety and dilemma for Kristiana, because, according to her: “The moment when you realize that you are going to become a parent is both beautiful and scary, it is an unknown challenge, especially when you are disabled. You think about how many limitations and how much freedom you will have in parenting.”

    The entire pregnancy process, from the information about conception to the moment of birth, was an unknown world not only for Kristiana, but also for Albanian doctors.

    She says that she has not received any kind of service related to sexual and reproductive health. Nor has she received any specific information related to her condition from the gynecologist. For any information, she has surfed the internet for hours, where she has found data, especially in English, on the care she should take during pregnancy and for herself during this period. She recalls this period as follows: "I remember at my first gynecological visit, I wanted to know my fertility status and the doctor responded somewhat fearfully, but was nevertheless supportive. When I had to go to the maternity ward to decide on a cesarean section, the doctors were full of prejudices, perhaps because they did not receive the right information from the previous doctor or perhaps because of a lack of protocols for cases like mine. It seemed as if they did not expect a paraplegic woman to be able to get pregnant or carry the pregnancy to term. I could see that they were not sure how to handle the birth of a child by a woman with disabilities and needed more time to study the situation.”

    Kristiana gave birth under full anesthesia and the boy came to life healthy, bringing endless happiness to the couple. The name they chose to give him was very meaningful, Hanёl, which means from the Korean language to Albanian: Heaven, peace, paradise.

    Despite the challenges and difficulties they face in their daily lives, again with the help of Teo, they are managing to raise their son with great care. This new dimension of life for her has not only brightened her days, but has also made her more aware of her values ​​as a woman, which is why she sends a message to everyone: "Disability should not stop love. Something I have noticed a lot is that people with disabilities focus only on their disability and leave everything else in their lives behind, including taking care of their sexual and reproductive health. The message that I would like to send with all my heart to people with disabilities is that we should not think of ourselves as worthless for having someone's love, on the contrary, go for it.”

"Love life is one of the most beautiful aspects of our existence"

STEFAN PALOKA

Fifty-seven-year-old Stefan Paloka is from Lezha and has been working at “Caritas Albania” for ten years and a half, where he has held various positions, such as: legal advisor, peer-to-peer counseling trainer, inter-Balkan project coordinator for Caritas Albania and, most recently, works as an advocacy officer.

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    Stefan was born blind and, at the best of times, he had no more than 4% vision in his left eye only.

    In 1994, he enrolled in the Faculty of Law, which he graduated from in 1998 with very good results. Stefan also holds a master’s degree in contemporary Albanian linguistics and is active on social networks, where he gives his opinions about current isues, trends and events, for which he enjoys a respectable reputation.

    His love story begins in the summer of 1995, when Stefan had finished his first year of studies at the Faculty of Law. In the village of M., which is located three kilometers south of the city of Lezha, he had a very dear friend, named F. Gj., who was blind due to an accident with a bomb. Since F. was a merchant and had opened a shop in the village, Stefan would go to his village from time to time to help him and spend time with him. It was in this shop that he would meet the woman of his life, Valbona.

    Various customers would come to the shop. One of them was Valbona, a nineteen-year-old girl, beautiful, with thick, curly, chestnut hair, smiling, energetic and very affectionate with F.'s children. "She really didn't stay long enough to engage in conversation, but since I was liking her more and more, I would use those few seconds to exchange jokes with her. Valbona would answer me with monosyllabic, but very sharp expressions. I began to live with the sweet stings of these jokes.

    But, to be honest, this girl was starting to seem more and more like she was mine, even though I didn’t dare say a word to her. The girl was considered one of the best in the village, if not the best. So, I felt like one of the dwarfs in front of Snow White. Only the prince was missing, but she certainly wouldn’t have any difficulty finding him and, in my mind, he could be anyone in the world, except me.

    Despite all these troubles, the inevitable happened. A day came when my love for her became bigger than me, so big that I couldn’t keep it all to myself, so strong that she began to command me. It was August 11, 1995, the day that changed my life forever and without which I would never have become the man I am today.

    After a few meetings, Valbona promised me eternal love, even though I had not made any promises that I could not keep, but on the contrary, I had warned her about the possibility that in the future I would lose even the little sight I had. Life was taking me to such heights that I was not sure I deserved them.”

    Valbona, had a distant cousin and neighbor F., hence she knew well the difficulties of people with visual impairments and these difficulties did not prevent her from fighting for her love. They did not stop her from overcoming all obstacles and prejudices. Stefan remembers that period clearly, as he recounts: “The beginning was particularly difficult. In respect of our customs, when the time came to ask the family for the girl's hand, I went there with a first cousin of my father's. My father was the only person in the house who strongly opposed it. "Stefan may be the worst choice for everyone, but for me he is the only possible choice", Valbona said. In April 1996, eight months after we met, my father invited us to hear his answer. P., that man who seemed like a tiger, had a heart like a gentle lamb. He had reflected and had made up his mind to give justice to our love. I know that now he is shaking his head and smiling at me from heaven..."

    Stefan married Valbona and the fruit of their love are two sons, the eldest son Davidi, who was born on August 7, 2001, and Emanuel, who was born on January 27, 2004. Stefan feels blessed as a parent and regarding the challenges of parenting, he says “I have often heard blind people say how much they would like to see their children’s faces. It’s not that I don’t want to, but the lack of sight is not a source of suffering in my case. I think I have many other ways to recognize and identify my children and to be madly happy about the wealth that God has showered on me by making me their parent.”

    As for information about sexual and reproductive health, he says that there was no culture of providing such information in the city where he lived. “At that time, there was no awareness of disabled people about their rights. Everything that the Albanian state legislation and policies, such as disability financial support, exemption from direct taxes, reduced transport or electricity bills, and the like, were interpreted as an act of generosity by the state and not as an expression of the rights of disabled people. Meanwhile, everything was directed towards welfare and no one talked about social inclusion. I was employed from 1998 to 2007, but I did not dare to ask for workplace adaptations or accessibility elements, for fear that this could lead to my dismissal as a nuisance. Now that information is not lacking and there is a kind of awareness about the rights of people with disabilities. Stefan also gives a message for everyone: “I say to people with disabilities that life is given us to live and that you cannot say that we have lived it, if we have not known life in all its complexity. Love life is one of the most beautiful aspects of existence, if not the most beautiful. So do not think that the love dimension should be removed from the menu of the life of disabled people. In short, free yourselves from any taboos dictated by your disability. You should demand from life everything that every person wants, including love life. I would remind society in general that disability is an identity trait no more important than any other human trait and that a person should be loved with everything, including his disability. If this is the case, any obstacle that is placed in front of people with disabilities which hinders their full realization, including sexual fulfillment, is unacceptable.”

    Finally, he thinks that this life would be more beautiful if around him there was “a world without barriers, especially without social and institutional barriers, which for long periods of time has led to living a life below my true potential.”

"I couldn't become a mother with a partner, but I decided to trust science"

ERVEHE TUSHE

Veko, like her friends and listeners call her, is a journalist at Radio Tirana and has completed her studies in Albanian language and literature at the Faculty of History and Philology in Tirana. When she was 3 years old, she was accidentally burned, which left her with serious consequences, besides the burns on the face she lost part of eye vision. The greatest damage was psychological, because it took her years to understand and accept her condition. Veko poetically describes her life, confessing:

“Sitting in a corner of my life, I silently asked myself what is wrong with me that children do not approach me, but they cry when they see me!"

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    How much I want to caress them and talk to them sweetly, tell them fairy tales about birds and flowers, and then, softly, softly with an angel's lullaby, put them to sleep under the sheets. Dream in the sun! They did not befriend me and did not like my stories! The answer did not come instantly, but day after day. I learned bitterly that I did not have a skin that was soft to touch or pure as marble to look at! It was true! Looking at my scarred face, I felt wrinkles, a kind of scratched alabaster, a deviated nose and a large forehead that continued to the middle of my head! I started to cry!

    Aunt Monda, the person who raised me and continues to be by my side, enabled me to travel twice to Birmingham, England and give a somewhat regular shape to my face. This was made possible thanks to the doctor from England, Janet Godall and Dr. Paul Levic. With regenerating creams, I understood from the less screaming reactions that my appearance seemed more regular.”

    I got up quickly from that story, which started out horribly, and I fought to be a human, a person who would be born again, to be a woman, a lover, a literature student, a radio journalist and a mother. I decided to forget what I looked like to become what I wanted.”

    Her greatest desire was to have a child, to become a mother, to have a child from her heart and carry it in her chest. Even though she did not have a partner, she decided to become a mother through assisted reproduction methods.

    “I had heard about artificial insemination, but I did not believe it and I did not think that a woman could become a mother through needles and drugs. The doctors explained to me in detail how this method worked and what awaited me. After three months of trying and going back and forth to the hospital, I realized that I was expecting a child.”, - explains Veko.

    After a normal pregnancy, in June 2022, she gave birth to a beautiful girl, whom she named Jean Marie. She describes the emotions and the entire journey of realizing her dream: “I handed over my body to science to be a mother, because a partner did not give me the opportunity to be his wife. I did the most human duty...live. I cried and laughed happily, I swore while caressing my belly that I would be everything for the creature growing inside me, making me the happiest woman in 38 years. Exactly at the age of 38, on June 21st, 2022, my precious daughter Jean Marie cried in my arms. That June evening when my daughter was born, the room was full of flowers and balloons, with gifts and wings, with clothes and smiles, with surprises and sighs of joy.”

    Her life as a new mother was accompanied by many sweet moments, but also with many difficulties and challenges. However, Veko says that she quickly adapted to her new life and has managed to take care of her daughter, who is now 2 years old, surrounded by people who love her and help her in her daily life: “My sisters gave me great help, teaching me how to hold her in my arms, how to be careful with keeping the baby's head on the pillow, how to wash and change her, how to dress her, etc. I am lucky because I always have people around to help with the things that I cannot do to take care of my daughter. After the age of 1, Jean seems to help me, because she expresses what she feels by touching me with her hands and speaking to me with half-words, we understand each other very well as mother and daughter. I get lost in my life and my daughter, when she calls me "mom!", "mom!"

    Expressing the greatest gratitude to Alma Hidri, who has accompanied her for 20 years, leading her by the hand both at school and at work, as well as maternity hospital or other places where she goes, Veko shows that, in addition to the beautiful moments, parenting has also fatigue, stress and challenges, which are not few. She does not deny the prejudice she faces in society as a mother with disabilities: “I want around people who do not whisper like bees about my disability or who do not judge me for having a child without a father, or who do not ask me why I, as a person with disabilities, decided to become a mother, and other personal questions of this kind. I decided to remain silent and answer only to my daughter.”

    Veko, through her life daring to make all her dreams come true, provides a model, which shows that if there is will, a person can achieve anything. Her message for women with disabilities who want to become mothers is: “Before you are ready to take care of a baby, take care of yourself, gain independence in everything you need and let your family support you. Talk openly with your parents, because they are the greatest support for you and the child you want to have. Show the world your values ​​and intellectual and human sides. A child is not a piece of clothing, or a new phone that is bought to challenge someone. Think about having a child when your body and mind is ready.” Veko, with her story, clearly emphasizes that society can make it easier for women with disabilities to be parents, by offering better accessibility to the physical environment, information and communication, transportation, and by offering support services such as personal assistance, which enable parents with disabilities to raise their children with dignity, without relying on the time and goodwill of others to perform daily activities.

"When my son calls me 'dad', I forget all the difficulties"

ILIR KASA

Ilir Kasa is a 48 year old from the city of Tirana, who has been working for many years as a lawyer at the Agency for the Provision of Integrated Public Services (ADISA), an institution with a mission to provide new and integrated model of public services, placing the citizen at the center.

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    It took him many years of effort to get a decent job, because he had a very difficult life compared to others. When he was 20 months old, he was paralyzed as a result of a polio epidemic that spread in Albania in 1978.

    Ilir's father, with the help of some of his friends, managed to invent a wheelchair for his son. With this chair, Ilir went everywhere, in the mornings he went to school and in the afternoons he played with his friends. Amidst many difficulties due to the lack of infrastructure, Ilir managed to complete his primary education at the “7 Marsi” school. Then, part-time, he completed his mandatory years of education and continued further to high school “Kostandin Kristoforidhi”. After several years of rest, he decided to enroll at University and complete his higher studies in Law, where he later obtained his lawyer’s license. Today, he feels fulfilled on a professional level, but also at personal level.

    His love story began in 2017, when he met his wife Ylvie. He recalls that period: “I have had a very active life in family and society. Society and family have helped me to never feel left out. Having an active life, I have had various intimate relationships with women with and without disabilities over the years. This means that I have had an active sex life, which is still a taboo in Albanian society for people with disabilities. I met my wife 7 years ago. At first, we exchanged Facebook addresses through a mutual friend. After talking online, we also exchanged phone numbers and arranged to meet. The meeting was friendly and in the context of getting to know each other. We continued to talk on the phone for a few days later, because she lived in Tropoja and we couldn’t meet in person every day. A few days later, our conversations stopped. I thought that was it and I was very upset that we weren’t talking. I missed her voice and didn’t understand why I couldn’t connect with her. After a month had passed and I had completely lost hope for a relationship with Ylvie, she called me again. Her one-month silence was related to a family tragedy that had happened to her. We met again and I expressed my feelings and the fact that I had missed her a lot during the time we did not communicate.”

    Ilir, although he loved Ylvie very much, wanted to be realistic and honest with her, so in the dtae that brought them together forever, he thought of telling her all the difficulties and challenges that awaited Ylvie if she was to live with him. So, he wanted to show her at all costs what her life could be like next to a person with disabilities. He remembers details of how he made it happen: “We had our first kiss in Valbona. I went there with a friend and the bride’s friend. As soon as we got there, we had lunch and booked two rooms. I took my room on the second floor, so that Ylvia could see the difficulties we face. My bride is visually impaired. However, until she met me, she didn’t know much about the challenges of having a physical disability like mine. We went to the beach for a week and there we decided to get married together.”

    The marriage between the young people was not welcomed by Ylvie’s family, because they had prejudices and a significant lack of knowledge about people with disabilities. Iliri still remembers the great uproar that took place before they got married:

    “At the time I met my bride and decided to spend our lives together, I was employed. The economic aspect is very important in a marriage. When I told my family, they agreed with my decision, but the moment the bride told her family, it became a scandal. The bride’s mother did not want her to marry me, nor did her sisters. Only one of the sisters and the bride’s brother, who lives in England, approved of our love. There was a “war” with the rest of the family, to the point that her relatives told the bride’s mother: it’s better to take the girl’s life than let her marry a man with disabilities. They thought that since I am in this condition, I cannot have sexual relations or have children. After many, many efforts on the part of the bride, they all agreed.”

    After the wedding, they planned to have children. Less than a year after the wedding ceremony, their son Siari was born, who is now 5 years old. Ilir sees parenthood as full of challenges, but also unforgettable and emotional moments: “The moment our son was born, our life became both wonderful and difficult. The difficulties are of the most diverse kind. Sleepless nights, the viruses that are present in every season, but with a lot of patience and love we managed. Only when he calls you “dad” or “mom”, every difficulty and fatigue goes away.”

    Ilir admits that being a parent with disabilities is challenging due to barriers in infrastructure and lack of accessibility. It is difficult for him to follow his son everywhere, such as accompanying him to the dentist or simply entering a toy store with him. He explains that you feel like you are not fully participating in his upbringing. Regarding access to sexual and reproductive health services, he says that in Tirana, accessibility is more or less good in health centers, because there are usually ramps and elevators, although the rooms are very narrow and it is difficult to maneuver with a wheelchair. For him, a big problem is still the prejudice of health care providers regarding disability, sexuality and parenting. The message he gives to all people with disabilities is related to his advice to enjoy life in all directions and not to limit yourself in any aspect.

"Every day of our lives brings a new challenge, but, thanks to love, we manage"

PRANVERA QYRA

Pranvera Qyra is 47 years old. She was born and raised in Elbasan. For some time now, she has been employed as a telephone operator at Raiffeisen Bank, where she presents the bank's products and services, helping customers with the necessary information. In order to achieve participation in the labor market, she had to overcome many challenges and difficulties, because from the age of 13 to the age of 23, she remained confined to her home, due to a sudden illness that appeared at the most beautiful age of her life.

  • Read Pranvera's full story

    Pranvera was a resourceful girl, who excelled in her studies and everywhere, until one morning when she was 13 years old, she felt that something was happening to her body. She remembers that moment in her life like this: “After many tests, I was diagnosed with a serious illness. There was a tumor mass in my spine. I was lucky, because it was non-malignant and would not recur after the operation, according to what the doctors said. I had already been lying down and was waiting with joy for the operation, because I thought that everything would return to normal. After the operation, only the pain subsided, but not my physical condition, my legs would no longer function as they used to. With the help of physiotherapy, the improvement was very slow, almost imperceptible. Over time, I managed to walk with great difficulty, with the help of crutches. My physical condition did not prevent me from getting an education, having a job and my family.”

    For almost 10 years, Pranvera was cut off from school and from any kind of activity of life outside the home, and this was a very dark period, which she recalls with tears in her eyes: “It was a very difficult 10 years for me and my family, we gave up. I could not imagine that I would have a life of my own, until I started to leave the house, to get to know people like me. In 2000, I learned to drive and managed to have my own car. This was the happiest moment of my life, because I was now able to go out. I resumed my life where I had left off, I finished the eighth grade, then high school part-time. After a 3-4 year break, I enrolled in the Faculty of Social Sciences, branch “General Psychology”. In 2019-2021, I will pursue my professional master’s studies in Urban Social Planning and Human Resources.”

    In addition to the year 2000 that gave her the freedom to move, after she learned to use her own car, another unforgettable year in Pranvera’s life is 2005, when she met her husband Elton. Since he was little, Elton had been labeled “the balcony boy”, because he stayed locked up at home all the time and watched the whole world outside from the balcony. He suffered paralysis of his lower limbs when he was 18 months old, as a result of polio. He has used a wheelchair all his life. Pranvera tells us the circumstances in which she met Elton:

    “It was 2005, when a group of young people came to the Elbasan spa area, consisting of boys and girls with disabilities. I knew the organizer of the project and she knew that I lived in that area, so she invited me to join the group for the last 3-4 days. Among them was Elton, a cheerful boy and in harmony with everyone. He was a cheerful guy and it seemed like he just wanted to celebrate and enjoy the whole time without worrying about the opinions and prejudices of others, which were very common in the area where we lived. Elton made my stay enjoyable for those 3-4 days. It seemed to me as if I had known him for a long time. Then, in July, through a foundation, we went to a summer camp with Elton and other people with disabilities. During this time, we had the opportunity to get to know each other better. In Elton I saw a very precious human, I appreciated the sincerity, closeness and love he gave to others. This made me see him differently and give Elton confirmation of his liking for me.”

    Thus, the two began a strong bond of friendship and mutual liking, where they shared together, not only the difficulties they encountered in everyday life, but also the feelings of great love they had for each other. After four years, they thought of strengthening their bond even more through cohabitation. Although Pranvera was a disabled person herself, her family did not initially welcome this relationship. She says that all her family members were skeptical about this relationship, and her mother had even told her: “at least he should use crutches like you”. After many discussions and efforts, Pranvera received the family’s approval to cohabit with Elton in Tirana, because he was employed in the capital city.

    She admits that she herself was not entirely sure about this big step, not because she had doubts about her love, but because she was afraid of the difficulties caused by the inability to move. “Beyond everything or prejudice, in May 2009 we decided to start this journey, without knowing where it would lead us. The love we had for each other was enough for us. Over time, the first difficulties of life as a couple faded away, because we accepted that every day of our lives would be a challenge and we would get through it.”

    Understandably, it was not easy to find information about the sexual and reproductive health of people with disabilities, because this topic was not talked about by anyone in society.

    Today they have been living together for 15 years and have successfully managed to have an independent life in all senses. They have overcome all the doubts and skepticism of their family that they could live away from them and without their support. They are even proud of the achievements of Pranvera and Elton, because today, after many sacrifices and with many years of savings, they have managed to buy an apartment of their own.

    They have harmony, love and everything else, but they also have a regret, they did not manage to become parents. Pranvera says that “during the first years of cohabitation, we were afraid that our child would be bullied at every stage of his growth, due to the fact that he was born to two parents with disabilities. But after almost 10 years of cohabitation, and with the encouragement of our family, who told us that we should have a child, because life takes on a different meaning, we decided to try through the IVF procedure. Within a year, we did two processes, but the result was negative. We were disappointed, we were very upset, because we started dreaming about parenthood, but even this was a test for us. We normalized emotionally and accepted the fact that we cannot have children. According to the imagination, it would have been nice if it had happened, but we are not missing anything, as long as we never had it. We love and adore our life at this point where we are.”

    And while she lives peacefully and happily for the achievements they have achieved together with Elton, Pranvera also gives a message, not only for people with disabilities, but for all people in general: “To dare and know how to manage their lives with the little good things they carry within them. To dare to try something different, even if they know that 99% will fail, they will still provide a plus experience in their lives. There are no achievements without challenges, life is beautiful with its ups and downs, life is beautiful with all its colors.”

"She chose me against everyone and everything"

GËZIM LLESHI

Gëzim Lleshi is 43 years old and has been living in the city of Laç since 1997. He was born in Puka and spent his early childhood in this city. When he was in the third grade, his family moved to the city of Burrel, where they lived until 1997, before finally settling in Laç. He has progressive muscular dystrophy, a disease that appears in the first 5 years of life. The first years of childhood up to the age of 14 are the easiest, as the disease is in its early stages and is easily manageable. Then, with adolescence comes the greatest advancement of the disease, making movement and living more difficult.

  • Read GĂ«zim's full story

    Thus, for GĂ«zim, the difficulty of movement became the reason for him to drop out of high school and not only. It was a difficult period in his life, as he faced the challenge of having a physical disability, which in his case meant being a wheelchair user, and facing the barriers that society places on him, such as the lack of accessibility and transportation, which made him excluded from education and later from the labor market.

    At the age of 16, he found solace in his faith in God and participating in religious life, which was for him a motivation and gave him a community where he felt welcomed and accepted. The loss of his father was another big punch for him. But this great pain turned into strength for him to move forward. GĂ«zim recalls it this way: “In 1997, when I was 16 years old, I lost my father and at this time I came to know God. I was the type of person who watched a lot of television, and since when a relative passed away, and especially my father, the television wouldn’t be turned on for a year by custom, I started to study religious books with great attention. Then, I started to go regularly to a religious institution and get more involved in my faith. I made friends with many believers and began to feel like part of the family. In a short time, I became the leader of the youth group thanks to the dedication and seriousness I had in my faith. It was like my gift to teach others and encourage believers to stay strong in their faith.”

    It was precisely the religious institution the place where GĂ«zim found not only his community and his place in the world, but also the greatest happiness of his life, because that’s where he would meet Rina, his future wife. He tells us how their love began: "I was 22 years old when I met Rina, but we had a purely social relationship and without any interest or sign of being anything more than "friends". It was 2012, when I was 30 years old, when everything started. We talked a lot on the phone, the conversation became very interesting and lasted without realizing how the minutes flew by. During our group meetings, I saw myself without realizing it, head over heels in love. I wanted to look at this girl endlessly. Among all those who came to listen to me in religious lectures, I only saw that girl's eyes. She was very sweet and very tender in heart. These were the two qualities that made it clear to me that I was in love with Rina. I expressed this and we took our time to get to know each other as people who want to connect their lives together and her answer was "Yes". Rina had a teacher and friend named GĂ«zim, but she had no information or experience with any relatives who had disabilities. She didn’t know much about disabilities, but she would ask GĂ«zim about everything and try to read online. It was difficult to talk to people in person, be they healthcare providers, about sexuality and disability, and it was unthinkable that she would be able to find this information at her local health center.

    Even though she was a young girl and had every opportunity to have a stable relationship with someone without disabilities, she decided to marry GĂ«zim and follow her heart.

    For Rina, this was the biggest and most difficult decision of her life. Her decision hurt many of her family members, who were against this love. Almost everyone opposed her, because as GĂ«zim says: “They never wanted their eldest daughter, their first child, to make such a choice. The consequences and challenges for Rina continued for a long time, because for a long time her family did not accept this fact and maintained an exclusionary and denying attitude towards her. With a lot of patience, love for each other and faith in God, we overcame that challenge too.”

    In 2013, they got married. This event made all of GĂ«zim’s relatives very happy. But he did not feel good, as he saw that none of Rina’s family and relatives came to the wedding. Of course, this situation also caused Rina a lot of sadness, who suffered the separation from them for a long time.

    A year after the wedding, they had a son and two years after the son, their daughter was born. Now they are four and this means a lot to GĂ«zim, who says: “God loves us so much that he is generous with us. My children and my wife are my strength. The challenge of being in a wheelchair is sometimes very small, as I see my beautiful family and my children growing up, giving me pure and precious love.”

    Their family was shaped and brought to life by challenges, because according to GĂ«zim, a person grows and understands the taste of life better when there are shortcomings and difficulties: “Being a parent is a blessing from God. Our children are the essence of the whole thing. They are so good and give us strength, heart and a lot of love. Normally, a disability makes life somewhat more difficult. For me, it is challenging that I cannot fully be a part of their activities, especially outside the home, due to the lack of accessibility. Accessibility in the city would make our movement easier and would help the four of us to be together everywhere as a family.”

    Therefore, he concludes his story with a message for more accessibility for people with disabilities in our cities and communities and, of course, calls for less prejudice towards intimate relationships and parenting for people with disabilities.

"We found each other and together we built a family"

ZENEPE PIRJA

Zenepe was born in Skrapar and lives in the village of Marikaj, near Tirana. She currently runs a foundation for children aged 3-6, where supported by donations, she has managed to help all the children in the community, and applied her experience to educate this age group.

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    She had a beautiful childhood and enjoyed everything around her. After finishing the 8th grade in a village in Skrapar, she went to the high school in the city. After completing her studies, she was employed as a kindergarten teacher. At the same time, Zenepe enrolled at the University of Elbasan, where she began her part-time studies in the field of pedagogy (Lower Cycle).

    In addition to work and studies, she had also found the man of her life, to whom she was engaged and they would soon get married. But, while excited to put on the white dress and celebrate the wedding, she had a terrible accident. Zenepe remembers this moment, which changed her life forever: “On August 24, 1996, I set off with my brother on a motorbike to go to a store to try on and choose the white dress, which was my most beautiful dream at the time. While we had another 5 minutes drive to reach the designated place, the motorbike went off the road and we ended up in an abyss.”

    After months of hospital treatment, it was clear that she had remained paraplegic from the accident and would have to use a wheelchair. In addition to adapting to this traumatic change in her life, she had to face another disappointment at that critical moment. Her fiancé, who would become her husband 15 days after the accident, called off the marriage precisely because of her disability.

    Zenepe returned home and closed herself within four walls: “For 10 years I lived in my solitude, even though my parents, brothers and sisters offered many opportunities to spend time outside those walls. But I refused, because I was ashamed to go out in a wheelchair. Ten years later, an invitation came from an association, inviting me to a camp in Pogradec. This trip completely changed my perspective. I met many people with disabilities there. I saw how they lived their lives. They were happy and full of optimism. Some of them were even in love. From that moment on, my life began to take a different course.” Leaving home and engaging in social life with people of her own kind made Zenepe reflect and become more active in realizing those dreams that had been interrupted in the past. She learned to rely more on God and over time became a devoted believer.

    Her life changed fundamentally when she started going to the camp for people with disabilities in Marikaj, because she managed to get a job as an educator in a kindergarten nearby. Her involvement with children enriched her life and made her laugh and play with their beautiful world.

    In 2009 she met her future husband, Gëzim, a kind man with a soft heart. He was also a person with disabilities. More precisely, Gëzim was a paraplegic and wheelchair user due to a road accident, the same as herself. At the time of the accident, Gëzim was also close to getting married but after that, his fiancée had given up on marriage, precisely because of his disability. Similar stories and people who meet to create a family.

    At the beginning, both Zenepe's and GĂ«zim's family had doubts about their relationship, because they thought the functioning of their marriage as unattainable and impossible, as they both used wheelchairs. However, as Zenepe says: "the love we had for each other triumphed. We understand each other very well about the challenges that arise in life and how to face them. Faith gives us peace, love and strength to face them with ease. By being able to give society and the community the values ​​and positivity that characterizes us, we have done beautiful and valuable things."

    Despite the challenges, their relationship continued. Zenepe and GĂ«zim built a life together in Marikaj. They both worked hard at the only kindergarten in the area and, thanks to this, they managed to build a beautiful house from scratch that is fully wheelchair accessible for both of them.

    But, of course, as the years passed by and they had some comfort with their home and work, they felt that something was missing. They both really wanted to have a child and although it was not easy and there was not much information about how they could make this dream a reality, they decided to ‘move every stone’. In fact, many years after being together and through the IVF procedure, Zenepe became pregnant for the first time and this was incredibly happy news for the couple. It was not an easy pregnancy and she had to stay in the hospital for many months before giving birth to her daughter, but all the efforts were worth it, when she saw her beautiful creature for the first time.

    One of the most beautiful things the couple has is their daughter, El’anna, which means: “that God answered me”. It was Zenepe and GĂ«zim’s prayers that were fulfilled and today they enjoy as a beautiful and happy family together. For Zenepe, she is “the most beautiful thing that has happened to me in my life; it is unconditional love, it is a breath that gives you strength, it is the continuity of life, it is the motivation to move forward... She faces every challenge and does not feel tired, but only calm and joy. She is the person who gave us the most beautiful name: Mom and Dad.”

    Zenepe had the strength to find her place in society, so her message to all people with disabilities is: “Never give up on life’s challenges!”