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An illustrative story

Experiences of a Child with Spina Bifida in an Inclusive School
11:00 PM Dec 04, 2025 IST | Dr Showkat Rashid Wani
Experiences of a Child with Spina Bifida in an Inclusive School
an illustrative story
File Representational photo

Every year, 3rd December is observed as the International Day of Persons with Disabilities, a day dedicated to promoting the rights, dignity, and inclusion of persons with disabilities across the world. It serves as a reminder that disability is not a limitation but a dimension of human diversity. This day urges governments, educators, communities, and society at large to reflect on how accessible, empathetic, and inclusive our institutions truly are.The National Education Policy (NEP) 2020 expands the definition and scope of inclusive education by emphasizing barrier-free access, flexible learning, and individualized support for children with special needs. Complementing this framework, the Rights of Persons with Disabilities (RPWD) Act 2016 mandates an inclusive system where students with and without disabilities learn together, supported by adapted pedagogies and reasonable accommodations.

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However, inclusion in practice often diverges from inclusion in policy. Schools—especially in under-resourced regions—struggle with inadequate infrastructure, insufficient training for teachers, and limited awareness among peers and the larger community. The lived experiences of children with disabilities thus become critical evidence for understanding the success or failure of inclusive systems.

This article presents a detailed case study of a Class 7 student with Spina Bifida, to examine how inclusive education unfolds in a real classroom. This story illustrates the complexities of physical, emotional, social, and academic participation in a mainstream school while highlighting systemic gaps and potential pathways for transformation.

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Background of the Child

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The student, aged twelve, is enrolled in a private inclusive school in Srinagar. Diagnosed with Spina Bifida, she uses a wheelchair and requires catheter assistance twice daily. Her mother accompanies her to school every afternoon during the lunch break to support her needs—a role she performs with unwavering dedication.

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Rabia (name may not be real) is academically average, enjoys reading, and expresses a strong desire to participate in school activities. Yet, her participation is hindered by mobility barriers, peer attitudes, and infrastructural limitations. Her case epitomizes the intersection of disability, gender, and geographical constraints.

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Method of Data Collection

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The findings presented here are drawn from:

  • an in-depth interview with the student
  • conversations with her class teacher and resource teacher
  • an interview with her mother
  • classroom observations
  • reflections from field visits as part of a longitudinal qualitative research project

Data were analyzed thematically to uncover patterns related to academic adaptation, peer relationships, teacher attitudes, parental involvement, and emotional wellbeing.

Case Narrative

  1. Daily School Experience

The student begins her narrative by stating:

“I look very different from everyone. I cannot walk and roam around in school. I usually read books during games period because I cannot do much.”

This simple expression captures the layered nature of her experience—physical limitation, emotional distance, and the silent adaptation she undergoes each day. The wheelchair restricts her movement across the campus, especially since the school lacks ramps, accessible toilets, and barrier-free entry in several blocks.

The games period becomes symbolic: a time meant for joy, but for her, it becomes a reminder of exclusion. Yet she finds solace in reading, constructing a private world where limitations dissolve momentarily.

  1. Academic Participation and Classroom Accommodations

The student sits in the front row to ensure easy access and teacher monitoring. Her class teacher acknowledges:

“She is disciplined and sincere, but I often struggle to give her enough attention because the class is large. I wish we had more training to handle such needs.”

Despite goodwill, the teacher lacks formal training in special pedagogy, a gap highlighted in NEP 2020, which emphasizes the need for specialized modules and extended internships in inclusive schools.

She reports that:

“Sometimes the teacher goes fast, and I cannot copy everything. My friend helps me finish the notes.”

Peer support partially compensates for the absence of individualized lesson pacing. The resource teacher works with her thrice a week, helping her with written assignments, comprehension difficulties, and exam preparation. She describes this relationship warmly:

“My resource teacher listens to me. She tells me that I can do well in studies if I keep trying.”

This rapport strengthens her academic confidence and reinforces the importance of dedicated resource support in inclusive classrooms.

  1. Peer Interactions: Acceptance and Insensitivity

Peers play a pivotal role in shaping the social climate of an inclusive classroom. Her experience reflects both acceptance and hurtful encounters.

She recounts:

“Some girls help me move my wheelchair, but a few ignore me. Once someone called me ‘the girl with wheels’ and laughed.”

Such remarks reflect the subtle yet damaging stigma that children with disabilities face. Although many classmates are kind, isolated incidents leave lasting emotional effects. The student admits: “I feel bad when they talk like that. I wish they understood me better.”

Peer insensitivity arises not from malice but from lack of awareness—a gap that peer-sensitization programs could effectively address.

Yet, she has a circle of supportive friends who help her navigate the classroom, pass notebooks, accompany her during lunch, and provide emotional comfort. Their acceptance contributes profoundly to her wellbeing.

  1. Emotional Experience and Self-Perception

Rabia’s emotional world is sensitive and introspective. When describing herself, she says: “I am not like other children. I feel left out when they run or play. But I know it is not my fault.” This balanced yet poignant statement reveals both vulnerability and resilience.

Feelings of isolation, especially during outdoor activities and school events, are recurrent. She expresses sadness about missing events held on the playground or upper floors. However, she compensates through academic engagement and creative interests.

Her mother observes: “Rabia never complains. She has accepted her condition, but I worry that she hides her pain.”

This highlights an important dimension: internalized emotional labor, where children mask their struggles to avoid burdening caregivers.

  1. Role of the Mother

Rabia’s mother is central to her schooling experience. She says: “My mother comes to school every day during lunch break. She never complains. She says I am never going to be a burden.” This unconditional support is both practically essential and emotionally grounding.

For Rabia’s mother, inclusion demands daily sacrifices—time, mobility, and psychological strength. She organizes life around her needs and expresses the anxiety that accompanies each school day: “Every morning I pray that she manages without problems. Her courage gives me courage.”

Such parental resilience is rarely acknowledged in policy frameworks, yet it remains indispensable for inclusion, especially in high-need cases like Spina Bifida.

  1. Teacher Attitudes and Institutional Gaps

The class teacher shows empathy but admits to limitations in training. The resource teacher is enthusiastic but overburdened, handling multiple students with varying disabilities. Both highlight the absence of:

  • structured training in inclusive pedagogy
  • adequate teaching aids
  • assistant staff for high-need children
  • infrastructural support such as accessible toilets and ramps

These gaps are systemic rather than individual shortcomings. The school reflects a common situation in Kashmir: willingness but inadequate capacity.

Analysis of the Case

This student’s experience illustrates several key dimensions of inclusive education:

  1. Inclusion Requires More Than Physical Placement

Although she attends a regular school, structural barriers (stairs, inaccessible washrooms, uneven grounds) restrict her participation. True inclusion demands architectural accessibility and universal design—not merely enrollment.

  1. Teacher Preparedness Matters Immensely

The teacher’s empathy is not enough without special training. NEP 2020 emphasizes sensitivity training, early identification, and continuous professional development—needs strongly highlighted by the student’s experience.

  1. Peer Sensitization is a Critical Determinant

Positive peer interactions enhance emotional wellbeing, while teasing undermines self-confidence. Structured programs on empathy, disability awareness, and collaborative learning can transform classroom dynamics.

  1. Parental Involvement Sustains Inclusion

Rabia’s mother plays the role of caregiver, assistant, advocate, and emotional anchor. Inclusion often relies heavily on such invisible labour, which schools must acknowledge and support through flexible schedules and caregiver involvement.

  1. Resource Teachers are the Bridge Between Policy and Practice

The student’s progress is significantly attributed to her resource teacher, whose motivation compensates for systemic gaps. Schools need adequate numbers of trained special educators.

Implications for Practice

Based on this case, the following measures can strengthen inclusive education:

  • mandatory training modules on special needs for all teachers
  • peer-sensitization workshops
  • accessible infrastructure in all school blocks
  • emotional counseling for children with disabilities
  • resource rooms equipped with assistive devices
  • involvement of parents as partners in the IEP (Individualized Education Plan)
  • flexible assessment methods and extra time in exams

These measures align with NEP 2020’s call for holistic and equitable education.

Conclusion

This story is a powerful testimony of courage, love, and aspiration. It showcases both the beauty and the fragility of inclusive education in Kashmir. While the policies envision an empowering educational landscape, the on-ground reality requires sustained effort, structural reform, and attitudinal change.

Rabia’s journey reveals that inclusion thrives where there is empathy, collaboration, and commitment. Her case urges educators, policymakers, and communities to recognize that inclusive education is not a favour but a right—and its fulfilment demands collective responsibility.

(Note: Names in the article may not be real)

 

Dr Showkat Rashid Wani, Senior Coordinator, Centre for Distance and Online Education, University of Kashmir.

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