This is a fictional story that draws from my experiences serving at Sristi Village, a nonprofit devoted to people with intellectual disabilities (IDs) in rural South India, and research about intellectual and psychiatric disabilities. All named characters are not representations of any real person.
Ever since holding 1.5 kg (~3 lb) Rasiga—a miracle baby—in her hands, Kasturi knew her love for her daughter would know no bounds.
The doctors told Kasturi and her husband, Murugappan, that their child was unlikely to survive when she was born three months prematurely [1]. They warned that even if she did, she would be prone to vision and hearing complications [1]. She might develop breathing or feeding problems [1]. She would be at risk for developmental delays like cerebral palsy and autism [2]. Kasturi’s anguish deepened, and even the ever-stoic Murugappan began to worry.
Neither of them had studied beyond eighth grade. Kasturi needed to take care of her two younger siblings at home, and Murugappan took on a job as a construction contractor. They were married five years ago, when she was 18 and he was 21. After experiencing three miscarriages in as many years, the couple finally received good news in January. The successful pregnancy was a balm to their fraying marriage, and the last few months were the happiest Kasturi had felt in years. Her parents and in-laws were relieved, Murugappan doted on her, and she was excited to be a mother. Now Kasturi felt like all the good fortune was being ripped from her as she walked to the Mailam Murugan temple, nestled in the heart of the southern Indian village the couple had called home for their entire lives.
—
The priest had known Murugappan since he was born, married him to Kasturi, and helped him through the miscarriages. Murugappan was named after Lord Muruga, known for his bravery. Though raised to be a warrior, Murugappan was a peacemaker. He loved music. He could immediately spot an untuned mridangam (drum) or a dancer who was not in sync with the talam (rhythm) of the music by milliseconds, much to the annoyance of the priests who had half his talent despite studying devotional song for years.
Kasturi, too, was fond of music. Her parents would often joke that she should have been born to a different family, of a different caste, when she spent hours listening to songs from M. S. Subbulakshmi and storied Carnatic musicians instead of attending to her siblings. Kasturi’s mom would frequently joke: “Do you think that some miracle is going to make you a bigshot rasika?” The term, “rasika” draws from Sanskirt and is used to describe connoisseurs of fine arts like classical music, dance, art, or poetry.
Early in their marriage, Kasturi and Murugappan would take daily walks to the market, watch Carnatic concerts on his phone, and stargaze late into the night. Murugappan even gifted her a Rs.12,000 mint leaf green tape recorder—costing about a month of his salary—upon finding out she was pregnant. Both of their parents considered it a frivolous purchase but Kasturi loved it. She spent the first few days clutching it close to her chest, as if her gestating identity as a mother depended on it.
Now, the couple was joined by their parents, who brought flowers and fruit as offerings, at the temple. They prayed for Rasiga’s recovery. Murugappan returned home that evening, required to return to work the next morning. Though he insisted that Kasturi also get rest, she returned to the hospital, and continued waiting for news. The next afternoon, the doctors returned with the miraculous news that the baby was healthy. They asked for her name, and without hesitation, Kasturi said: Rasiga, the Tamil for “fan,” the colloquial, loose interpretation of the Sanskrit Rasika.
Kasturi bought Rasiga home, and within days a parade of aunties and uncles from across the village dropped in to share loads of unsolicited advice. Rasiga was beautiful and giggly and filled with a joy that nourished the new parents. Murugappan started working longer hours to make ends meet, and Kasturi passed her days caring for and singing to Rasiga.
But after four months, Rasiga’s round brown eyes could still not follow the small toys that hung on a mobile over her crib or the silver spoon Kasturi used to feed her pureed vegetables and medicines. Kasturi worried. Murugappan told her to avoid needless doctor’s visits and bills. At six months, Rasiga didn’t roll over and at one year, she still couldn’t pull herself up to stand. Kasturi’s parents said these were simply growing pains, and doctors visits would only risk a lifetime of unnecessary medications.
Kasturi knew that her baby should walk between 9 and 18 months and talk between 12 and 18 [3]. Should she feel anxious when Rasiga could do neither as 15 months crept up to 16? When 17 edged towards 18? She wondered if Rasiga’s temper tantrums merited a doctor’s visit. But wouldn’t anyone act this way if they couldn’t talk…if they were never understood? Should she just discipline Rasiga more strictly? Could everything resolve on its own? Should she trust the street peddler who told her about homeopathic therapies?
Still restless, Kasturi took Rasiga out to play often, hoping the animals everywhere in their village streets—sometimes a nuisance—could actually be accomplices, therapeutic forces in Rasiga’s life. A nascent, but growing body of evidence-based research suggests that time spent with animals can help decrease anxiety and improve both mental and physical functioning [4]; in fact, animal companionship provides especially potent benefits for people with disabilities [5].
Kasturi started using the temple as an excuse to attend seminars held by a local nonprofit, Sristi Village. Sristi served communities from across the Villupuram district, including another family she knew in Mailam. She did so without her husband’s or in-law’s knowledge. She was worried that they would blame her. She blamed herself. At one of Sristi’s events, she received bright pamphlets on raising a child with intellectual disability, and she grew close to one of the social workers, Ms. Rachel. Though born in the village to Tamil-Christian parents, Ms. Rachel studied special education at a school in Chennai. Ms. Rachel explained that Rasiga’s delays merited concern.
Importantly, she told Kasturi that intellectual disabilities are not mental illnesses. The prevalence of mental illness is disproportionate among people with intellectual disabilities and severe mental illnesses can qualify as a disability, but the two conditions are distinct [6, 7, 8]. Kasturi slowly started to understand the complex, overlapping terminology.
Kasturi began to excitedly tell Murugappan the things she learned: Rasiga wasn’t mentally ill; she could still have a full life: work, travel, marriage, kids; and, importantly, she should enroll in a special school to be able to do all this. Murugappan said his salary wouldn’t be enough to pay regular school fees, let alone fees for a special school. He said he knew it wasn’t her fault, but perhaps she shouldn’t have eaten so much unhealthy food during her pregnancy. She showed him the pamphlets explaining that the risk factors for intellectual disabilities aren’t restricted to pregnancy. He was silent. She was angry.
She recalled when they used to spend late nights philosophizing about the ways music can heal various ailments or debating the merits of different Carnatic singers as the stars looked down. Now they were cranky—with one another, with Rasiga, with everything by 10 pm. What did she owe Murugappan, and his pain at not having a “normal” marriage or child? What did she owe to herself?
As frustrating as her life at home was, Ms. Rachel told Kasturi she knew of a weekly free clinic where the doctor was experienced in caring for children with disabilities. They could observe Rasiga’s behavior to see if she met internationally recognized criteria for common intellectual disabilities before issuing a disability certificate if applicable [7, 8]. Ms. Rachel warned her that many IDs do not have medical or genetic tests, and that the doctor would rely on the family to answer questions about Rasiga’s development [7].
Though scared, Kasturi felt less nervous. Her daughter’s diagnosis and disability certificate could be used to enroll Rasiga in the free Sristi Special School. Here, she could receive regular physiotherapy and speech therapy alongside traditional classroom training. Sristi would take care of her transport, meals during school times, and the cost of any uniforms/school materials. Most importantly, Sristi would welcome Rasiga into their family, allowing the entire family to meet others like them.
Please stay tuned for part two: we will see Kasturi become a special educator at Sristi Special School, Murugappan comes to accept his daughter’s diagnosis, and ultimately Rasiga grows into her namesake!
Citations:
[1] CDC. Preterm Birth | Maternal and Infant Health | Reproductive Health | Centers for Disease Control and Prevention. 24 Oct. 2023, https://www.cdc.gov/reproductivehealth/maternalinfanthealth/pretermbirth.htm.
[2] Heuvelman H, Abel K, Wicks S, Gardner R, Johnstone E, Lee B, Magnusson C, Dalman C, Rai D. Gestational age at birth and risk of intellectual disability without a common genetic cause. Eur J Epidemiol. 2018 Jul;33(7):667-678. doi: 10.1007/s10654-017-0340-1. Epub 2017 Dec 6. PMID: 29214412; PMCID: PMC6061122.
[3] CDC. “What Is a Developmental Milestone?” Centers for Disease Control and Prevention, 29 Dec. 2022, https://www.cdc.gov/ncbddd/actearly/milestones/index.html.
[4] Martins CF, Soares JP, Cortinhas A, Silva L, Cardoso L, Pires MA, Mota MP. Pet’s influence on humans’ daily physical activity and mental health: a meta-analysis. Front Public Health. 2023 May 30;11:1196199. doi: 10.3389/fpubh.2023.1196199. PMID: 37325330; PMCID: PMC10262044.
[5] Fine AH. The role of therapy and service animals in the lives of persons with disabilities. Rev Sci Tech. 2018 Apr;37(1):141-149. doi: 10.20506/rst.37.1.2747. PMID: 30209422.
[6] Sartorius N. Disability and mental illness are different entities and should be assessed separately. World Psychiatry. 2009 Jun;8(2):86. doi: 10.1002/j.2051-5545.2009.tb00220.x. PMID: 19516925; PMCID: PMC2691158.
[7] ICD-11 for Mortality and Morbidity Statistics. https://icd.who.int/browse/2024-01/mms/en#605267007. Accessed 1 Mar. 2024.
[8] Unique Disability ID| National Portal of India. https://www.india.gov.in/spotlight/unique-disability-id#:~:text=CMO%20Office%2FMedical%20Authority%20assigns,generates%20UDID%20and%20Disability%20Certificate. Accessed 1 Mar. 2024.
