[Blog] Parents — The Silent Architects of Inclusive Societies

Title: [Blog] Parents — The Silent Architects of Inclusive Societies

Acceptance: The First Act of Inclusion
The acceptance of a child with a disability by their parents is the foundational act of an inclusive society. Far from pity or charity, it recognizes dignity, potential, and the right to a full life. No allowance or institutional framework can replace the human and emotional impact of parents. This is where true inclusion begins.
The Parental Journey: The First Line of Social Progress
Since the birth of my twins over 32 years ago, I have learned that parents:
• Are essential actors,
• Compensate for system gaps,
• Ensure continuity in education, therapy, and emotional support.
The COVID-19 pandemic confirmed this reality: without parents, no system holds.
Disability: A Unique Reality
Every child is unique, and each family experiences a different journey.
Inclusion cannot be standardized. It must be personalized, flexible, and person-centered.
Education and Leisure: Fundamental Rights
Access to education, leisure, sports, and culture is a right.
Infrastructures must adapt to children—not the other way around.
Universal accessibility is not a luxury; it is essential for social progress and participation.
Valuing Parents and Persons with Disabilities
• It’s time to break away from:
• Pity,
• The charitable model,
• Empty discourse.
Families should no longer have to beg for fundamental rights like pensions. Inclusion must not remain a slogan on banners.
Competence, Responsibility, and Governance — End Ministerial Corporatism
For institutions to function, there must be:
• Competent leaders,
• Profiles with real knowledge of disability,
• Sincere and practical commitment.
People without experience or knowledge of the field have no place on disability-related platforms.
Ministerial corporatism: a major barrier to inclusion.
In many countries, public action regarding disability is fragmented.
Each ministry works in isolation, protecting its territory rather than the interests of the disabled person.
This corporatism leads to:
• Slow decision-making,
• Unnecessary overlaps,
• Contradictions between services,
• Diffusion of responsibilities,
• Lack of tangible results for families.
No inclusive society can progress while ministries operate independently.

Disability requires unified and coordinated governance, with inter-ministerial groups and regional service points accessible to families.

Parental Platforms and Self-Representation
Parents are indispensable partners.
Their knowledge and experiences should guide policies and programs.
No sustainable inclusion is possible without their voices and those of persons with disabilities.
Rights Frameworks and Collective Governance
International conventions (CRPD, CRC, African Protocol, SDGs) mandate a comprehensive and coordinated approach.
Disability does not fall under just one ministry.
It concerns:
• Health,
• Education,
• Social protection,
• Transport,
• Culture,
• Employment,
• Housing,
• Sports.
To make progress, institutions need to collaborate and listen to those who live with disabilities daily.
Early Detection and Parental Empowerment
Early detection is only useful if accompanied by guidance, training, and ongoing parental support.
This is how children can truly benefit from the inclusive society we aspire to.
Daily Inclusion
December 3rd is International Day of Persons with Disabilities.
But the 2025 theme reminds us that inclusion must be lived every day and not just showcased annually.
A dedicated day for parents would honor their contribution and strengthen their role as agents of social change.
The Way Forward: Acceptance, Expertise, Action
• Acceptance paves the way,
• Parental experience guides action,
• Collective action produces results.
We ask for neither charity nor compassion: we demand dignity, competence, commitment, and tangible results.
"Nothing about us without us" starts at home and should extend into competent and coordinated institutions.

By Ali Jookhun OSK