生きる実感の濃密さ、旅先の風の愛撫で共有　　　　　　　　　　　　　　　　　気ままなリライト８６

医療的ケア児も旅行当たり前に - 日本経済新聞

In Japan where the majority of able-bodied individuals are prioritizing their worth based on productivity and capabilities, advocacy groups supporting children with severe congenital disorders are striving to challenge societal misconceptions and biases that tend to undermine the value of individuals who don't fit traditional productivity models. Those advocacy groups are asserting that a crucial shift in societal thinking is needed, focusing less on an individual's productivity and more on the inherent dignity that every human possesses. They believe this transition is vital to foster more inclusive, empathetic, and equitable communities where every child is respected and treasured for who they are as an individual.

The advancement in neonatal medicine, a double-edged sword of technology, has inadvertently led to an upsurge in the diagnosis of severe congenital disorders in children. The number of such cases has doubled in the past decade, now reaching close to 20,000 nationwide. While this medical progress is resulting in a rise in the termination of pregnancies where severe congenital anomalies are detected through prenatal screening, it is also bolstering survival rates for infants grappling with previously fatal, intractable conditions. That is leaving those children in an around-the-clock struggle for keeping alive, requiring unceasing assistance such as regular sputum suction and ventilator support to aid their breathing.

Parents who are ready to take on the challenges of raising their children with a sever congenital disorder have to confront prejudice and discrimination embedded into legal, political and social systems in favor of those without disabilities. Children with disabilities are likely to marginalized, excluded or treated differently by their peers or communities. The opportunities available to them are restricted or inaccessible, compared with those offered to their able-bodied peers. That disparity is often obstructing parents from enhancing the quality of life for their disabled children. Requests by parents for equal access to services crucial for their children's emotional wellbeing are viewed as too demanding or unrealistic, considering the substantial financial and psychological load they could impose on predominantly able-bodied communities.

Boosted by legislative changes favoring parents and caregivers of children with severe congenital disorders, an advocacy group in Kanazawa City, Ishikawa Prefecture has been mounting a campaign to foster inclusivity in the local tourism sector. The organization, known as TryAngle, is championing the rights of children with severe congenital disorders. Three years ago, they published a travel guidebook tailored for families with children facing those conditions. Now, they're embarking on a monitoring tour, gathering firsthand insights from those families to evaluate how effectively each hotel promotes inclusivity, diversity, and empathy. TryAngle is creating checklists to measure the transparency in each hotel's approach to welcoming families with disabled children. TryAngle’s chief manager says, “For parents serving as caregivers with a relentless task of ensuring their children’s breathing remains unimpeded, even while lodging in a hotel, the opportunity to share the out-of-the-ordinary experience away from home with their children feels as challenging and rewarding as a quest for the Holy Grail.”

"Many people often over-emphasize economic productivity as the sole yardstick for measuring life's worth, thereby failing to appreciate the unique perspectives and insights that children with disabilities bring to their communities," Yuka Tanihata, a 38-year-old mother has reflected. Her eight-year-old daughter, Maho, is challenged by Nonketotic Hyperglycinemia (NKH), a rare metabolic disorder, and West Syndrome, a severe type of epileptic encephalopathy. While accompanying Maho on an overnight monitoring trip to the Yamanaka Hot Spring in Kaga City in late March, Yuka questioned the prevalent perception of the value of life, asking, "What distinguishes the value of life between a soul housed in a body with limited control, and one in a body that moves without constraints? Every individual, even the healthiest among us, unknowingly engages in activities every day that could potentially hasten their mortality. Each breath, whether taken in gentle strides or sudden leaps, inexorably pulls us towards life's inevitable conclusion, an end that arrives unpredictably, sooner or later ." The divide, she told herself, between healthy children and those with severe congenital disorders is not in the value of their lives, but in their acute awareness of the delicate balance between life and death. Children with severe congenital disorders live a life punctuated by daily brushes with life-threatening moments, each experience building their life story. As such, the simple act of a gentle breeze caressing their faces takes on profound significance, making those life-affirming moments arguably more rewarding and meaningful than those experienced by their healthier counterparts. She says, “A subtle change in my daughter’s expression brings immense radiance to my life, displacing any guilt I once harbored about my daughter's birth with an eloquent testament to her joyful resilience in our shared journey.”