Speak Up! Be Heard! Spina Bifida Youth Matter!

On July 21, 2024, a momentous occasion unfolded as the inaugural Spina Bifida Philippines Youth Assembly convened. This groundbreaking event was a testament to the resilience and determination of a remarkable group of young individuals. Coming from different regions across Luzon, they were all united by a common bond – Spina Bifida.

The assembly marked a historic milestone for the Spina Bifida community in the Philippines. For the first time, young people affected by Spina Bifida had a platform to connect, share their experiences, and explore the unique challenges they face as they navigate life with Spina Bifida. The atmosphere was filled with a mix of excitement, anticipation, and a sense of shared purpose.

In a solemn and prayerful atmosphere, the special assembly commenced with a Eucharistic celebration. The presiding celebrant, Fr. Tereso Campillo, Jr. OP, delivered an inspiring homily that resonated deeply with the attendees. His words focused on the transformative power of prayer, emphasizing the significance of entrusting our worries and burdens to the loving hands of God. He encouraged them to turn to prayer as a means of finding solace, strength, and hope. By placing their trust in God and offering their worries through heartfelt prayers, they could experience a profound sense of relief and peace.

The SB Youth Assembly was divided into 4 parts:

PART1: CHARACTERISTIC OF AN SB YOUTH

The day began with an engaging exploration of the unique characteristics that define a SB Youth. It was a journey into their world, where the interplay between their thoughts, feelings, and experiences came to life. The session aimed to shed light on the profound influence that society exerts on their self-perception.

As the discussion unfolded, participants delved into the various factors that shape a SB Youth's identity. They examined how cultural norms, societal expectations, and media portrayal contribute to the formation of their self-image. It became evident that society often imposes unrealistic standards, creating a breeding ground for self-doubt and insecurity among SB Youths.

The participants of SB Youth Assembly emphasize that they represent more than just physical limitations. They aspire to embrace their unique identity and have a voice. Despite being in wheelchairs, SB Youth members remain active and capable of achieving great things. They may encounter uncertainties, but they face them with courage and bravery. While their physical appearance might suggest weakness, they possess unwavering confidence in themselves. Additionally, although they may not always have the opportunity to express their opinions, they are visionaries with a clear sense of direction. Lastly, despite their introverted nature, they demonstrate genuine care and compassion for others.

The session culminated with a powerful reminder: "If you project a positive self-image, people will be more likely to see you as a positive, capable person." This phrase resonated with participants, emphasizing the significance of cultivating a positive mindset and actively countering negative self-talk.

PART 2: CHALLENGES/ISSUES FACED BY SB YOUTH

In the second session, participants went through facilitated discussions and participants gained insights into the internal struggles faced by SB Youths. These discussions were carefully structured to create a safe and open environment where participants felt comfortable sharing their thoughts and experiences. Facilitators, skilled in guiding group discussions, skillfully navigated the conversations, ensuring that all voices were heard and respected. Through these discussions, participants gained valuable insights into the complex emotional and psychological challenges faced by SB Youths.

Here are some of the Challenges SB Youth are facing in the Philippines

1. Delay in Schooling:

○      Lack of accessible schools with ramps and pwd-friendly facilities.

○      Bullying and discrimination faced at school, creating an unwelcoming environment.

○      Frequent hospitalizations for medical procedures, disrupting their education.

2. Financial Burden of Medical Expenses:

○      Struggles with managing family budgets due to high medical expenses.

○      Insufficient financial resources to cover treatment costs and other necessities.

○      Emotional distress caused by the financial strain on families.

3. Mental Health Challenges:

○      Increased risk of mental health issues such as depression, anxiety, and low self-esteem.

○      Difficulty coping with the emotional and psychological impact of their condition.

○      Limited access to mental health services and support.

4. Socialization and Sense of Belongingness:

○      Desire for friendships, romantic relationships, and a sense of community.

○      Challenges in building and maintaining social connections due to physical limitations,

stigma, and lack of inclusive opportunities.

○      Feelings of loneliness, isolation, and a lack of belonging.

5. Accessibility Issues:

○      Insufficient transportation options that accommodate wheelchairs and mobility aids.

○      Inaccessible public spaces, buildings, and amenities, limiting their ability to participate in

activities.

○      Lack of accessible healthcare facilities, making it difficult to receive treatment and follow-up

care

By dwelving into these topics, participants developed a greater empathy for SB Youths and recognized the importance of providing supportive and understanding environments that can help them navigate their internal struggles more effectively.

PART 3: TALKS FOR SB YOUTH AND THEIR PARENTS

For the third session, we were honored to have Guest Speakers share their knowledge and expertise.

Teacher Pia Clarisse A. Dela Cruz, an Occupational Therapist, began by asking about the audience's familiarity with occupational therapy. Despite being relatively unknown in our country, it is crucial for children with special needs like spina bifida. She briefly explained how occupational therapy aids these children.

Her insightful discussion centered around "Following Child's Lead: Promoting Independence and Self-Confidence for Youth with Spina Bifida". She shared practical knowledge and tools to empower parents in raising confident, independent, and successful individuals. Teacher Pia emphasized the significance of self-acceptance, resilience, and the transformative power of community.

She reminded parents that by attentively following their child's lead and providing appropriate support, they can unlock their children's full potential and facilitate fulfilling lives. As a heartwarming conclusion, she presented a song from Bini titled "Na Na Nandito Lang", the song conveyed a powerful message to the SB youth, assuring them that their parents and countless others stand by them, offering unwavering support, love, and encouragement. She urged them to embrace their dreams fearlessly, knowing that they are not alone on this journey.

Atty. Jessica Siquijor-Magbanua, a highly acclaimed advocate for individuals with disabilities, took the stage as the second speaker. Her captivating address focused on the vital importance of cultivating self-advocacy skills, bolstering self-confidence, and fostering unwavering resilience. Drawing on her personal experiences living with spina bifida, she shared the intricate challenges she confronted in both education and employment. Despite these formidable obstacles, she emerged triumphantly, shattering barriers and achieving her aspirations. Her remarkable journey served as a beacon of hope, not only for the SB youth in attendance but also for their parents.

Atty. Jessica's narrative painted a vivid picture of the countless hurdles she encountered throughout her educational journey. From the lack of accessible facilities to the prevailing stigmas surrounding disability, she fearlessly navigated a system that was often ill-equipped to accommodate her unique needs. Yet, rather than succumb to these disheartening circumstances, she harnessed her unwavering determination to advocate for herself and demand equal opportunities. Through her persistent efforts, she paved the way for countless other individuals with disabilities, leaving an enduring legacy of inclusivity and empowerment.

In the realm of employment, Atty. Jessica's journey was no less arduous. However, she refused to be defined by these setbacks. Instead, she turned her adversity into a catalyst for action, becoming a tireless advocate for accessible and inclusive workplaces. Through her dedicated efforts, she challenged employers to embrace diversity and recognize the immense value that individuals with disabilities bring to the workforce.

Atty. Jessica's captivating story served as a resounding testament to the limitless possibilities that lie ahead for people with disabilities. Her unwavering spirit, coupled with her unwavering dedication to self-advocacy, inspired the SB youth and their parents alike. Her message resonated deeply, leaving an indelible mark on the hearts and minds of all who were fortunate enough to witness her address.

PART 4: I AM A SB YOUTH AND I MATTER!

The final portion of the Assembly served as a comprehensive summation, encompassing all the experiences and insights gained throughout parts 1 to 3. It included the definition of the characteristics of a SB Youth, their challenges and issues, as well as enlightening and inspiring talks from guest speakers. Importantly, SB youth and their parents were called upon to make a solemn pledge—to work diligently towards establishing a more inclusive society, one where individuals with disabilities are afforded equal opportunities and have equitable access to resources.

SUMMARY:

The 1st Spina Bifida Philippines Youth Assembly was a resounding success. It provided a much-needed platform for young individuals with Spina Bifida to connect, learn, and empower themselves. The assembly became an avenue for the SB youth to share their personal stories. They spoke candidly about the struggles they had faced, the triumphs they had celebrated, and the dreams they held for the future. Their words painted a vivid picture of the resilience, determination, and hope that characterizes the Spina Bifida community.

The assembly concluded with a call to action, that they have to Speak up so other people can hear them and let them see their importance in the society. The SB Youth Assembly urged participants to become advocates for themselves and others with Spina Bifida.

They were encouraged to use their voices to advocate for their rights and raise awareness about Spina Bifida. The goal was to break down barriers, challenge stereotypes, and create a more inclusive society for all. The youth participants left with a renewed sense of hope and a commitment to work together towards a brighter future for themselves and their peers. The inaugural Spina Bifida Philippines Youth Assembly laid the foundation for ongoing dialogue, collaboration, and advocacy within the community. It was a testament to the power of inclusivity, empowerment, and the unwavering spirit of the Spina Bifida youth.