Sa’diyya Nesar discusses her testing health condition. She describes how her Islamic faith, the names of Allah and the stories of the Prophets gave her the strength she needed during her ordeal.
Sa’diyya was born with a muscular disability that was initially invisible but became visible as she aged. Highlighting the challenges of invisible and visible disabilities. This may include the need to constantly prove yourself and avoid being in need for help. The constant fear of others may have issues in engaging with those who are different. She emphasises the importance of facing reality, accepting life’s challenges, and having a support system. We also touch upon the broader societal issues of escapism, denial, and the lack of open communication about health and disability, advocating for more inclusive and accessible communities.
“Strength from Within” focuses on her disability experience and how stories of the Prophets can provide strength, while her other book reflects on other coping mechanisms like the 99 names of Allah. Sa’diyya begins to share her personal experience starting from her childhood and how it evolved over time.
An Ultimate Health Condition
Sa’diyya describes being born with a muscular disability called ‘Congenital Myopathy’ which involves muscles weakness from birth. It is initially invisible but became visible as she grew elder. She explains the challenges of having an invisible disability, such as constantly proving the need for help and the difficulty in others understanding her situation.
Sa’diyya contrasts this with the challenges of having a visible disability, where people might be afraid to talk to her or feel she is difficult to be around. “I couldn’t really prove that I had a disability because I was able to walk. I could climb the stairs, but it would be hard to climb them. People would just observe me for a while and noticed that I’m doing physical tasks very slowly. So disability was invisible until my teens, I needed to use a walking aid when going out. So it ended up becoming a visible disability.
You have to constantly prove that you need help, or there’s not anything wrong with you. Some people might not believe you, and they might feel like you’re making excuses and want to spend time with them. When you have a visible disability, some people might be afraid to talk to you. She shares her experiences of being hospitalised frequently as a child and how she coped by escaping into books.
The Concept of Denial and Escapism
Escapism is a recurring theme. Sadiyya describes her desire to escape from the hospital as a child and later from the misconceptions people had about her. She emphasizes the importance of facing life’s reality and giving oneself the chance to grow and overcome challenges. Sadiyaa shares a personal story about her spinal surgery and how she coped by playing games and avoiding spending time with her brothers.
She tells BMM, “Since I was born with a disability, it was my norm, but being at the hospital and feeling like I couldn’t get out, I wanted to escape from hospital. then after coming out, I wanted to escape from the misconceptions people had. I tried to avoid certain environments. Sometimes you need to avoid in order to grow, so it’s about giving yourself the environment to grow. It’s also giving yourself the chance to face life’s realities. In chapter five, I wrote about how I had the news of having to go through spinal surgery, which was a 20% survival rate, and I didn’t know how to process this. I didn’t want to spend time with my brothers as much because I didn’t want them to feel attached in case I didn’t make it. I didn’t know how to cope and I found myself finding comfort in playing video games at 15 years old”.
Sa’diyya discusses her frustration with happy-ever-after stories in books, which she found dissatisfying and unrealistic. She turned to stories of the Prophets, which she found more relatable and realistic, providing her with confidence and a sense of connection. “When I connected with the Stories of the Prophets, because it was so realistic. It was filled with stories explaining their adversities and how they talk, how they think, how they overcame, that I found a sign to find confidence, rather than the unrealistic stories of the happy, ever ending stories. The feeling of being misunderstood and judged by those around her, who often assumed she was making excuses when she couldn’t do something. She decided to write to clear misconceptions about disability and help others understand her experience.
The Emotional Stages of Escapism
The concept of denial and how it relates to escapism. Sadiyya explains that denial makes it easier to avoid facing difficult emotions and situations, but eventually accepting and processing them leads to healing. She emphasises the importance of having a support system, such as family or friends, to help cope with challenges. She describes her experience as mostly ‘confusing’, she tells us that “ I felt confused and misunderstood most of the time, like when I was trying to explain that I can’t do something, and someone would assume that I didn’t want to spend time with them, and they would walk away. I never meant to hurt them.
I don’t know what, where, how that conclusion came about, but I felt like I was constantly trying to explain, and the more I would explain, the more I would have to explain, and that would result in more confusion and more misunderstandings It becomes so much easier when you allow yourself to go through the different stages of healing, it becomes progress. When you eventually embrace how you feel rather than blocking it out, you allow the natural process, you will go through the natural stages of healing, Challenges are a part of life’s reality and we should be prepared for these, because you’re not the only one going through these. Look at the stories of the Prophets because they went through a lot more severe calamities than us. What really helps is to accept life’s reality and also embrace your nature as a human being, It’s normal to feel scared.
Accessibility and Community Support
The impact of denial on accessibility within especially minority communities. discusses the general fear of aging and the reluctance to make venues and facilities more accessible.
She highlights the importance of integrating healthcare awareness and programs into community facilities, rather than relying solely on hospitals. People often avoid discussing difficult topics like death and disability, which can lead to a lack of support and understanding. ”. She shares examples from the Qur’an of Prophets who had support systems in place and how this can help individuals facing similar challenges. Even the general fear of ageing, people avoid talking about how everyone once ate, or how they might find it harder to climb the stairs, or need more support. They are being told that they should just retire and stay at home, instead of trying to solve the situation within the community, seeing how to make venues more accessible, or how to integrate healthcare awareness or programs or facilities within the community, not just within the hospital buildings..
Open Communication With Loved Ones
The need for open communication within families about difficult topics, such as grief and disability. Sa’diyya openly shares her own experience of not being able to talk about her hospital life with her parents, which affected their relationship. The importance of bringing these topics into family systems and making them part of everyday conversations. Males often find it harder to open up about emotional issues, which can lead to further misunderstandings and lack of support. People also generally find even talking about death as that’s a very difficult topic too. So it becomes easier to avoid that topic altogether. Because of that then, there’s discomfort to talk about disability because requires you to face difficulty and adversity and people don’t have the time for that.
Children and Resilience
The importance of introducing these topics to children helps them to grow and learn about life in realistic way, whilst the entertainment industry for focuses on escapism rather than showing characters who grow and learn from their testing experiences. She also shares her own practice of avoiding negative news and fear-based media focuses on what is important, to maintain a positive state of mind.
General Reactions to Health Issues
Whether people tend to go into escapism or denial first which are common initial reactions, especially after significant life changes like surgery. She talks about her own experience of initially not wanting to talk about her surgery and the challenges of facing health issues in the community. The impact of COVID-19 on people’s willingness to talk about their health “ I initially didn’t want to talk about it. I didn’t want to things that, even though I accepted that this is something that I have to go through, it was just easier to not talk about.
Many people, especially during after covid, they’ve developed, long covid symptoms or autoimmune conditions, it’s just hard to face and discuss what you how your body was before and after, because this is not, It’s not we’re not given an environment within our communities or that space to accept and talk about. People are afraid to talk about what they’re going through because they might lose their jobs, we are conditioned to not talk about it, not face it, but categorise it as something invisible”.
Credit: Tahira Khan/Pixabay
The adventurous spirit behind the pages of British Muslim magazine. As the Editor-in-Chief, Natasha leads with a passion for exploration and a pen dipped in wanderlust. With a keen eye for halal travel experiences and an insatiable curiosity for new experiences, she brings readers along on captivating journeys to far-flung destinations. Through her vibrant storytelling, Natasha invites readers on enriching adventures, where every experience is a window into the muslim world.
