Inclusion Reflections from a Lived and Shared Journey

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INCLUSION

Reflections from a Lived and Shared Journey

- Siva

D I V E R S I T Y

CONTEXT

In recent years, conversations around inclusion have gained greater visibility across communities, educational institutions, and governments. For individuals with special needs and their families, however, inclusion does not begin with public discourse or formal frameworks. It begins at home—in everyday decisions, in small adjustments, and in the early attempts parents make to understand their child and what lies ahead.

As a person with partial eyesight, and through long-term professional engagement in the accessibility and inclusion space, I have had the opportunity to both observe and be part of the inclusion journeys of several families. Across these journeys, I often saw parents finding themselves navigating unfamiliar needs, accompanied by fear, emotional discomfort, or disappointment—these responses are deeply human and entirely natural. Over time, however, many families experienced a shift. With reflection, increased awareness, exploration, and advocacy, the initial emotional weight began to ease.

As perspectives evolved, parents were able to see their child more clearly—beyond fear or uncertainty—and begin the process of acceptance. What became increasingly evident was that a family’s perception of their child plays a significant role in shaping the child’s sense of dignity, participation, belonging, and overall outlook towards life and relationships. Just as importantly, this shift often created space for bonding, shared joy, and the possibility of a fulfilling life for both the child and the family.

INTENT OF THE ARTICLE

Since every child, every parent, every form of need, and every family response is different, there is no single path to inclusion that fits all. The key is to acknowledge these differences and thoughtfully choose the best possible path, focusing on a child’s needs as well as their capabilities.

Drawing from this understanding, this article offers reflections shaped by lived experience and professional engagement. These reflections are shared in the hope that they may help families pause, reconsider familiar assumptions, and choose approaches that centre dignity, participation, and inclusion.

This article is written in memory of my parents, whose values, trust, and advocacy shaped my early years, and with deep respect for my brother, whose support and encouragement continue to shape my journey. The perspectives shared here are as much a reflection of our family’s journey as they are of my own.

ABOUT THE AUTHOR

Siva Priya Jallipalli, often addressed as Siva, lives with partial eyesight and was brought up in a middle-class household in the town of Nellore, where she was educated through the regular education system and completed her professional education in CA IPCC. She began her career as an Audit Assistant at Deloitte and has since held leadership and consulting roles across the non-profit and digital accessibility space, and is a frequent invitee to panel discussions and speaking engagements at institutions such as ISB, IIMs, and Intuit. She is a fully funded National Overseas Scholarship awardee of the Government of India and is currently pursuing a mid-career master’s degree in London, UK.

1. SPECIAL NEEDS ARE NOT SUFFERING—THEY REFLECT HOW SOCIETY IS DESIGNED

Children are often described as having “special needs” as though the difficulty lies just within them. In reality, many challenges arise because environments, attitudes, and social expectations are designed around a narrow idea of what is normal.

To understand this better, let us consider a simple, everyday analogy.

When a child is given an undersized dress, the discomfort is obvious. We instinctively know that the issue is not the child’s body, but the dress that does not fit. The solution is to change the dress, not the child. Similarly, when a child with different needs struggles to participate, the limitation often lies in how spaces, systems, and mindsets are structured. When this is overlooked, the difference is labelled as a lack in the child rather than a gap in the environment. Seeing special needs through this lens allows families to shift attention away from blame and towards shared responsibility for adaptation. This way of seeing makes it possible to move forward with clarity rather than judgement.

2. NAVIGATING DIAGNOSIS, CERTIFICATION AND ACCESS

Seeking medical understanding is an important part of many families’ journey. Diagnosis can help explore treatment options and clarify what support may be needed. At the same time, diagnosis need not become a child’s defining identity.

In my own journey, specialists were consulted repeatedly to understand my visual challenges. Due to medical limitations at the time, a clear diagnosis was possible only when I was around eleven years old, after newer imaging technologies became available. The diagnosis confirmed that my specific eye condition had no medical cure.

By then, life had already moved on. I was studying in a regular school, like my brother and any other child with no special needs. At the time, the availability of assistive technologies in the market was limited, and braille was not considered appropriate for my learning needs. Instead, the focus remained on practical supports—handheld magnifiers, better lighting, seating adjustments, and small changes that enabled meaningful access.

There was no immediate move to obtain a disability certificate. Certification was pursued much later, only when it became necessary to seek reasonable accommodations such as a scribe and additional time during examinations. From then on, it was used strictly for access arrangements. In our context, a conscious effort was made not to rely on other entitlements such as disability pensions, as the focus remained on enablement and self-reliance through education, opportunity, and functional support. While circumstances differ across families, this distinction can help in making informed choices. Certification can remain a tool for access, without becoming a label that defines the child.

3. REMOVING BARRIERS WITHOUT ALTERING OUTCOMES

One of the most difficult dilemmas families and other stakeholders face is deciding how much support is enough. Too little support excludes a child; too much can quietly shift what is being assessed. Often, this boundary becomes unclear not out of intent, but out of concern.

During my years of education, I recall my family consistently advocating for support that ensured fairness rather than advantage. We did not resist support—we relied on it. But we also tried to protect its purpose: enabling access, not influencing outcomes.

I remember one Sanskrit examination where a Sanskrit tutor was assigned as my scribe. At one point, the tutor attempted to correct my answer. I gently asked them to write exactly what I dictated. Later, I informed the centre that subject expertise was not required—only the ability to read clearly and write legibly. This was not about proving anything. It was about keeping clarity on what support is meant to do.

A few years later, I saw the same principle matter in a different way while I was heading a training centre for persons with visual impairment. Most trainees came from rural backgrounds, with limited exposure to computers and English communication. After three months of training in digital literacy, communication, and life skills, they appeared for a state board technical examination.

All trainees cleared the examination in their first attempt with integrity and confidence, and the centre maintained a 100% pass record during that period. This outcome was possible not just because of examination-time accommodation, but because everyone involved—trainees, scribes, and the institution—held shared clarity about the purpose and limits of support.

The emphasis was placed on inclusive learning through preparation, accessible materials, sustained practice, and familiarity with examination conditions. The assessment itself was not softened; participation in it was made possible.

Whether in a school examination or while working within a professional setting, I observed that support served its purpose best when it removed barriers without altering outcomes. Holding this distinction clearly can be difficult for families in the moment, but it often protects dignity in the long run.

4. RESPONSIBILITY AND CONTRIBUTION ARE PART OF INCLUSION

Children with special needs are often viewed through extremes—either as fragile and dependent, or as individuals expected to possess exceptional abilities. Both views can be limiting.

The ability to take responsibility and contribute develops through opportunity, practice, and trust. From an early age, my parents encouraged me to do what was possible independently, while ensuring that appropriate arrangements were in place when support was genuinely needed. This approach gradually built a sense of responsibility and confidence to contribute to both family and society.

This became especially evident during periods of illness faced by my parents. Someone needed to take on household responsibilities, including cooking. With my mother’s verbal guidance and simple environmental adjustments—such as improved lighting in the cooking area arranged by my brother—I began managing the kitchen because the situation required it. What began as a responsibility became skill through continued practice.

More importantly, it changed how others related to me—not through sympathy or identity, but through trust in my ability and respect. Dignity and ability grow when children are trusted with responsibility, not shielded from it out of concern or fear.

5. INCLUSION IS LIVED IN EVERYDAY LIFE, NOT PRACTICED SELECTIVELY

Inclusion is not limited to classrooms, therapies, or formal settings. It is shaped in everyday life—in family gatherings, celebrations, social visits, and moments of difficulty.

While I was growing up, participation was never restricted due to my eye condition or by social pressures faced by my parents. I went on school excursions out of town, participated in cultural programmes such as dance performances, and spent time with friends like any other child. I remember my parents’ hesitation at times, especially when it involved travel or being away from home, but they still wanted me to participate fully and enjoy these experiences.

During school excursions, the principal ensured that a teacher checked in on my comfort at regular intervals, while making sure I remained with my friends unless additional attention was required. Support existed in the background, without taking away from the experience of being with friends.

Over time, inclusion also took the form of sibling support. My brother took on a supportive role across different stages of my life—helping with school routines, reading out printed material, arranging academic support when required, and continuing to stand by me after our parents passed away. Much of this was never planned or assigned; it emerged naturally through bonding, trust, and shared responsibility. That continuity made it possible for me to keep engaging with life, rather than withdrawing from it.

6. SUPPORT WITHOUT CREATING DEPENDENCE

Children with special needs benefit not from being made independent at all costs, but from being supported without fostering dependence.

Doing things for a child that they are capable of doing themselves—out of sympathy rather than need—can unintentionally limit growth. Simple distinctions matter. A child may be able to organise and take a pencil from their bag independently, while needing help if it falls on the floor in a crowded space.

Recognising this difference allows children to build confidence while knowing that support will be available when it is genuinely required.

CONCLUSION

It is often said that it takes a village to raise a child. But when a child has special needs, an important question remains: does the village raise that child with the same trust, space, and sense of belonging as it would any other?

Perhaps inclusion begins when families, communities, and systems are willing to reflect on this question—not to arrive at perfect answers, but to choose better ways of seeing along the way.