Kartunet - Accepting a disability, especially within the family, is not an instant process. Often, families are enveloped by excessive worry (overthinking), fear of social stigma, and even choose to hide the identity of family members with disabilities. Breaking this perception, Commissioner of the National Disability Commission (KND), Kikin Tarigan, openly shares his inspiring story about his journey as a person with a disability who once "forgot" his identity, until he was finally called to become an advocate for disability rights.
Coming to Terms with Palatal Malformation Since Childhood
Mr. Kikin was born with a condition called palatal malformation, a congenital anomaly where the inner roof of the mouth has a cleft or split. This condition made it difficult for him to simply drink breast milk and eat like typical babies, and made his speech articulation very difficult for others to understand until he was about 6 to 7 years old.
In response to these challenges, his family struggled to find information until they finally took medical action, undergoing plastic surgery in Jakarta in the mid-1980s. After the operation, because his muscles and articulatory organs were not yet accustomed to speaking normally, he had to undergo regular speech therapy at Santi Rama Special School (SLB) in the Sentiong area, Jakarta. Thanks to optimal early rehabilitation and family support, he successfully overcame his communication barriers and grew into an individual who successfully completed his education up to a master's degree (S2).
A Universal "Wake-Up Call" and the Rise of Advocacy Awareness
As time went on, Mr. Kikin grew up, blended into wider society, and gradually "forgot" the fact and his identity that he was a person with a disability. His awareness as a disability activist seemed to be in a deep slumber until the universe finally gave him a sweet "wake-up call" that touched the depths of his heart.
Of his three children, the first two were born without disabilities, but his third child was born inheriting the exact same genetic lineage as him: palatal malformation. It was the birth of his third child that fully re-awakened his awareness that disability is a human diversity that should be embraced and whose rights must be fought for. His child then followed in his father's footsteps, receiving adequate medical surgery and speech therapy until their condition was optimal.
Facing Stigma and Family Overthinking
Having a genetic disability lineage certainly doesn't escape the scrutiny of the surrounding community. Mr. Kikin openly shared the stigma or questions from his environment that often bothered him, such as skeptical remarks like, "Do you think your grandchild will be like you again or not?" Although these questions sounded disturbing, he chose to face them with an open mind and normalize the fact that the general public often has great curiosity due to a lack of education.
Anxiety (overthinking) not only comes from external sources but sometimes still shadows the immediate family. He recounted a humorous yet grounded moment when his third child was about to have a tooth extracted. His wife was momentarily plagued by doubt and asked, "If the tooth is pulled, will it affect that area (the roof of the mouth)?" This proves that parental anxiety is very human, but such anxiety should not prevent parents from providing the best health interventions and support for their children.
A Powerful Message: Show Yourselves So the State Can Be Present
Drawing from his rich life experience, Mr. Kikin delivers a very firm advocacy message to parents of children with disabilities. Often, due to misguided affection, parents engage in "positive affirmation" by considering their child "fine" and thus ignoring the real functional barriers experienced by the child. Denying or hiding a child's disability identity will actually harm the child's future, as they will not receive the identification, social support, and advocacy they should receive from an early age.
Every human being is indeed created perfectly by God, but the barriers arising from disability are a reality that cannot be denied. The key is very clear: for the state to be present and able to provide various rights and affirmative policies, people with disabilities and their families must have the awareness and courage to present themselves and register their disability status with the state.
Conclusion
Mr. Kikin Tarigan's journey proves that self-acceptance is the most essential first step towards empowerment. Transforming shame and overthinking into concrete action, acceptance, and advocacy is the best way to ensure that current and future generations of people with disabilities will live in a much more inclusive and supportive societal ecosystem.
References:
- "Why Is Disability Data in Indonesia Always Different? KND Commissioner Speaks Out! | Pertuni Media" (YouTube).