Living with Disability: My NDIS Story.

My daughter, Muji, is 20 years old and has cerebral palsy. Those two words include a world of challenges, but also a world of love, resilience, and unwavering hope, all grounded in the belief that "Indeed, with hardship [will be] ease" (Quran 94:6). Muji is non-verbal, can't move independently, relies on a feeding tube, and experiences seizures, which can cause temporary lost of consciousness and uncontrollable movements. Her needs are complex, and managing them has been a journey of constant learning, adaptation, and advocacy. Before the National Disability Insurance Scheme (NDIS), we navigated a complex landscape of support through the Disability Services Commission and other government departments. It was a system that composed many different sections, often difficult to navigate and with varying levels of support.

I remember the initial overwhelm of the NDIS process, 2019, six years ago. The forms, the language, the reports, the quotes, the huge scale of the system felt alarming. It was like trying to navigate a maze blindfolded, even after our experiences with the previous systems. But I knew, deep down, that this could be a game-changer for Muji and our family. So, I took a deep breath, invoked the name of Allah, and started the process.

It wasn't easy. There were setbacks, frustrations, and moments where I felt like giving up. Explaining Muji's needs, articulating the impact her disabilities have on her life, and fighting for the supports she deserved was exhausting. It felt like constantly having to justify her existence, her value, her right to receive help, a right that is inherent in every soul, as Allah (SWT) has honoured all children of Adam (Quran 17:70). But I persisted, driven by a mother's intense love and determination, and by the belief that "And be patient, for indeed, Allah is with the patient" (Quran 8:46). The memories of struggling with the Disability Services Commission and other departments only strengthened my determination.

The NDIS process forced me to become an expert on Muji's condition, her needs, and the available supports. I had to learn a whole new language – plan management, capacity building, assistive technology – on top of the knowledge I'd already gained navigating the previous systems. I became an advocate, a negotiator, and a record keeper. It was a steep learning curve, but it was worth it, knowing that "Allah does not burden a soul beyond that it can bear" (Quran 2:286), and that He would guide me through this.

Eventually, Muji's plan was approved, Alhamdulillah. It wasn't perfect, and there are still areas where improvements are needed, but it was a start. It opened doors to supports we previously could only dream of, even after our experience with the Disability Services Commission. Suddenly, things like respite care, therapy, and specialized equipment became a possibility, by the Grace of Allah.

The NDIS has allowed us to build a team of dedicated professionals who work with Muji and our family. We have a support coordinator who helps us navigate the complexities of the NDIS, a plan manager who pay invoices, therapists who work on Muji's nutrition, communication and physical skills, and carers who provide much-needed respite for me. They have become an extension of our family, providing not just practical support, but also emotional support and understanding. I am so grateful for these individuals.

The biggest impact of the NDIS has been on Muji's quality of life. It has given her access to opportunities she wouldn't have had otherwise. She's able to participate in activities, connect with others, and experience the world in new ways. It has also given her a voice, through assistive technology, allowing her to express herself and make choices. 

The NDIS journey is ongoing. There are still challenges, and the system isn't perfect. But for us, it has been a lifeline, a blessing from Allah, especially compared to the difficulties we faced with the Disability Services Commission and other departments. It has given Muji the support she needs to live her best life, and it has given me the peace of mind knowing that she is cared for and valued.

This is just our story. Every family's experience with the NDIS is unique. But I hope that by sharing our story, I can offer hope and encouragement to other families navigating the world of disability. You are not alone. Your child is worthy of support. Keep fighting, keep advocating, and never give up on the belief that your child deserves the best possible life. And remember, even in the midst of challenges, there is always hope, and Allah is always with us. As we say,  "Alhamdulillah, Allah made it through."

The Silent Path

Muji woke up, it was the typical start to her day. She felt trapped—her mind alert, her senses wide awake, but her body… unresponsive. Her limbs was replaced by stillness. Her body no longer obeyed her. She couldn’t move, couldn’t speak. The world outside her was as it always had been, vibrant and full of life, but she was caught in a cage she could neither see nor touch.

She had always been different—her body had never worked quite the way she wanted it to. Growing up, she was told how strong and resilient she was, that her quiet nature was something to be admired. But those words never felt like enough. They never filled the void of isolation she felt when everyone around her seemed to move in ways she couldn’t.

Now, in this strange, paralysis, she was utterly still. The sounds of the world around her—the chatter of her sisters, the clattering of dishes from the kitchen, her father reciting a familiar surahs—faded in and out, becoming distant as she fought to focus. There was no one who could hear her. No one who could feel her desperate longing for connection.

She thought back to the times when she was more alert and able to communicate, when she used the faintest gestures or simple eye movements to tell her family she was there. She wasn’t lost then. She could still be part of the world.

But now, everything was different.

Her mind raced, and for a brief moment, she wished for the ability to scream, to reach out, to move with the grace she once knew. But she couldn’t.

Then, the memories surfaced. She remembered the time when someone had seen her. Really seen her. It had been at a school event, one where she sat quietly in her wheelchair at the back, watching the others interact. It was a girl from her class, someone she didn’t know well, who approached and asked if she wanted to join. Not because of pity, but because she simply saw a person sitting alone, longing for inclusion. That girl had smiled and asked if Muji wanted to help choose the colour for the painting. No big gestures. No expectations. Just an invitation to exist. It was small, but it had meant the world.

The girl didn’t see Muji’s limitations. She only saw her potential. She only saw her.

A surge of energy coursed through Muji, and though her body remained immobile, her spirit stirred. If that girl could see her, then perhaps the world could, too. She needed to find her way to that kind of inclusivity again, the kind that didn’t rely on words or movement, but on presence and understanding. There were spaces where she belonged. She had seen them before.

Muji concentrated, focusing on her breathing. She couldn’t speak, but she could still think. She could still be. She would find a way to make her voice heard again, even if it was only through her actions, through the connections she forged.

The path to being truly seen and included wasn’t something she could walk alone. It wasn’t something she could walk at all—not with her body’s current silence. But maybe, just maybe, she could guide others to walk it with her.

A tear slid down her cheek—not from sorrow, but from a quiet resolve. Her journey to inclusion wasn’t over. It was just beginning.

Overcoming Disability Stigma in Muslim Culture

People with disabilities often face unfair treatment in different cultures, including within Muslim communities. Despite the teachings of Islam promoting kindness and fairness, misconceptions and stereotypes about disabilities still exist. It is important to challenge these unfair beliefs and include people with disabilities in Muslim society.

Common Misconceptions:

Some people have wrong ideas about disabilities in Muslim culture. They may think that disabilities are a punishment from Allah, consider people with disabilities as burdens, or believe they cannot do things on their own. These misunderstandings lead to exclusion, marginalization, and limited opportunities for people with disabilities.

Islamic teachings value and respect every person, regardless of their abilities. The Quran (16:46) says, "Allah does not burden a person with more than they can bear." This means that everyone faces different challenges, and we should support and help those who face difficulties, including people with disabilities. The Prophet Muhammad (peace be upon him) also said, "If you help a believer in need, Allah will help you on the Day of Judgment" (Sahih Muslim).

Islamic Teachings and Inclusion:

Islam teaches Muslims to be kind, fair, and inclusive. The Prophet Muhammad (peace be upon him) emphasized the rights of people with disabilities and encouraged their participation in the community. Islamic principles value the worth and dignity of every person, no matter their physical or mental abilities. By educating Muslim communities about these teachings, we can challenge unfair beliefs and promote inclusion.

For example, the Prophet Muhammad (peace be upon him) said, "Believers are like one body in their love, compassion, and care for each other. When one part of the body suffers, the whole body feels it" (Sahih Bukhari). This means that Muslims should support and care for one another, including people with disabilities, just like the different parts of a body work together.

Changing Our Perspective:

To overcome disability stigma, we need everyone in Muslim communities to work together. This means raising awareness, having open discussions, and changing unfair beliefs. Mosques, community organizations, and schools can create welcoming spaces that value diversity and offer support to people with disabilities and their families.

Islamic teachings also emphasize the importance of inclusivity and understanding. The Quran (49:13) says, "People, We have created you from different nations and tribes so that you may know one another. The most honorable among you in the sight of Allah is the most righteous." This means that Muslims should treat everyone with respect and kindness, regardless of their differences, including disabilities.

Education and Empowerment:

Education is essential in breaking down stigma. By learning about disabilities, their causes, and the challenges individuals face, we can correct misunderstandings and develop understanding. Providing resources, workshops, and training programs can empower people with disabilities to live fulfilling lives and contribute to society, overcoming the barriers created by stigma.

Muslim communities can organize educational programs that promote empathy and inclusivity. They can also establish support networks that provide guidance and help to individuals with disabilities and their families, in line with the Islamic principle of assisting those in need.

In Muslim culture, it is our responsibility to challenge disability stigma and create an inclusive environment that follows the teachings of Islam. We should recognize the value and worth of every person, regardless of their abilities. By promoting education, advocacy, and support, we can overcome disability stigma and create a more inclusive and fair Muslim culture. Let us remember the teachings of the Quran and the words of the Prophet Muhammad (peace be upon him) as we work towards building a compassionate and inclusive future where every member of our community feels valued and supported.

The 5 Best Animated Short Films To Raise Awareness About Disability

Disability is a part of life for many people, affecting them physically, mentally, or emotionally. It is crucial to understand and empathize with the challenges faced by individuals with disability to create a caring and inclusive society. Animated short stories have become a powerful way to raise awareness and inspire us about disability.

Animated short stories use animation to tell visually captivating and emotionally powerful tales about the experiences of people with disability. These stories go beyond language barriers and can be understood by people of all ages and backgrounds.

Here are five animated short films about children with disability that can be found on YouTube and the awareness that we can discover from each of them:

1. "Ian":

   Ian tells the story of a young boy named Ian, who has cerebral palsy. The film follows Ian's journey to be included and play with other children, despite his physical challenges. This short film emphasizes the importance of inclusion and acceptance. It highlights that children with disability should be allowed to participate and engage with their peers, fostering a more inclusive society.

2. "Alike":

   Alike portrays the story of a father and son living in a world that values conformity. The film focuses on the perspective of the son, who has special needs, and showcases his unique creativity and outlook on life. The short film encourages us to celebrate and embrace the individuality of children with disability. It reminds us that their unique perspectives and talents should be acknowledged and valued.

3. "The Present":

   The Present, this animated film, tells the story of a boy who receives a puppy as a gift from his mother. The boy is initially disappointed because the puppy has a disability, but he learns to love and accept the puppy as he is.  This animated short film raises awareness about disability, adversity, and compassion. It promotes disability inclusion and challenges the idea that people with disability are less valuable or lovable.

4. "Loop":

   "Loop" is a Pixar SparkShorts film that follows the story of Renee, a non-verbal autistic girl, and Marcus, a talkative boy, as they go on a canoeing trip together. The film explores their challenges and breakthroughs during the journey. "Loop" promotes empathy and understanding towards children with autism and non-verbal communication. It teaches us the importance of patience, communication, and embracing different ways of connecting and understanding others.

5. "Cuerdas":

   Cuerdas is a Spanish animated short film about Maria, a young girl who befriends Nico, a boy with a physical disability. The story portrays their heartwarming friendship and Maria's efforts to include Nico in their activities. This short film emphasizes the power of compassion and friendship when interacting with children with disability. It shows we can break down barriers and create meaningful connections through empathy and inclusion.

Animated short films are powerful ways to raise awareness about disability because they engage our minds and touch our hearts. They show us the difficulties faced by people with disability, offering insights into their daily struggles and unique perspectives. By watching these stories, we can better understand their lives and break down stereotypes.

These animated stories also promote important messages of resilience, inclusion, and the value of diversity. They display the strengths and achievements of children with disability, challenging the biases and assumptions of society. These stories inspire us to change our attitudes and work towards a more inclusive world.

Platforms like YouTube have made it easier for animated short stories about disability to reach a broad audience. These stories can raise awareness, start conversations, and shape how a society behaves about disability.

In conclusion, animated short stories are a powerful tool for raising awareness about disability. They educate and inspire us, helping us to understand and empathize with the experiences of individuals with a disability. Through the magic of animation and storytelling, these stories have the potential to change our minds and hearts, encouraging us to create a world that values and includes everyone, regardless of their disability.

Until the next post, may God bless you.

Love,

Lightnur.

Eid al Fitr Mubarak - 1 Shawal 1444

1 Shawwal 1444

To you and your loved ones, a happy Eid. 

Spread love, smile, eat, and most importantly, give Allah praise for granting us another Eid.

“Remember your Lord morning and evening, deep in your heart with humility and with fear; and also in a low voice; do not be of those who are heedless.” – The Holy Quran 7:205

I hope you have a wonderful Eid! Until next post, may God bless you.

Love,

Lightnur.

Breaking Barriers: Wheelchair Quotes That Challenge Stereotypes

Disability stereotype is making negative assumptions about people with disability for instance assuming a wheelchair user cannot understand or communicate without a support person.

There are several challenging stereotypes associated with wheelchair users that are bias, prejudice, and discrimination. It is important to challenge these stereotypes because they can be damaging and limiting as it leads to discrimination, exclusion, and inequality. Some of these stereotypes include:

Helpless:

One of the most common stereotypes about wheelchair users is that they are helpless and unable to do things on their own.

Dependent:

Another common stereotype is that wheelchair users are dependent on others for help and cannot live independently.

 

Sick or Diseased:

Wheelchair users are sometimes viewed as being sick or diseased, rather than simply having a physical disability.

Pitiful:

Some people assume that wheelchair users lead sad or pitiful lives, and therefore should be pitied.

Inspiration:

On the other hand, wheelchair users are sometimes viewed as inspirational simply for existing, which can be just as limiting and dehumanizing.

Unintelligent:

There is also a stereotype that wheelchair users are less intelligent or capable than able-bodied people.

Less Worthy:

Wheelchair users are seen as less worthy of respect. This is not true. They are no different from anyone else, regardless of their ability they should be treated with dignity and respect.

It's important to break the barriers of these stereotypes. They are untrue and harmful. Wheelchair users can lead a fulfilling life and have a lot to offer to humankind with their unique personalities, talents, and abilities, just like everyone else.

Until the next post, may God bless you.

Love,

Lightnur.