Sometime in July this year, Kavita Devi (name changed) and her 20-year-old son, Kunal Kumar (name changed), were walking to catch an auto-rickshaw to their home, located a kilometre away from Jehanabad railway station at around 4 pm.Jehanabad is an adjoining district of Patna, the capital of Bihar. They were returning after submitting his disability assessment report at the Sub-Divisional Hospital in Paliganj, around 34 km from Jehanabad. The two were heading towards the auto stand. Kunal was following his mother who was 50 metres ahead. He had barely walked a few steps when he lost his balance and fell. Seeing this, police personnel from a nearby outpost rushed to him and informed their superiors. Within minutes, a dozen police officers gathered around him. They thought the police had come to help them but they were mistaken. The police detained him, alleging that he had fallen because he was drunk. In 2016, Bihar implemented the Prohibition and Excise Act, which bans production, consumption, selling, buying and trading of liquor. The violation of this act attracts various sections of the Act. Police then took him to the Jehanabad town police station in a police van. Kavita pleaded with the officers, explaining that he was unwell, but they refused to listen. "The police told me that Kunal is drunk and that I was lying,” she recalls, sitting at her rented room in Gautam Buddha Nagar in Jehanabad.Kavita, 48, followed the police vehicle in an auto-rickshaw and reached the station as well. There, the police administered a breath analyser test, but the result was negative. After keeping him at the station for about 10 minutes, the police finally released Kunal. The two then took an auto-rickshaw and returned home by evening. They were shocked by the behaviour of the police. “It was humiliating. We both didn’t eat anything for two days in shock,” she says.According to an assessment report, Kunal suffers from intellectual disability. He has mobility issues so he can barely walk 15-20 steps without support, and if he doesn't, he stumbles and falls. He belongs to the kumhar caste which falls under EBC (Extremely Backward Class). His assessment report states that his chronic age is 20 years, but his social age is only nine. He has 50 percent intellectual disability, says the report prepared by Indira Gandhi Institute of Medical Science (IGIMS), Patna. IGIMS is an autonomous institution of Bihar, which was established by the state government in 1983 on the pattern of the All India Institute of Medical Sciences (AIIMS), New Delhi.Jehanabad town police station's SHO Umesh Prasad, when contacted, said that he does not remember any such incident.Hooch, Smuggling, Domestic Violence: Data and Politics Around Bihar's Liquor BanDisability and Intellectual Impairment Intellectual disability is a neurodevelopmental condition which starts manifesting during childhood or the developmental period. It involves difficulties in a person’s motor skills, communication and speech, social interaction, play and cognitive skills. It is a relatively new term for this neurodevelopmental condition. It was not in use until a decade ago. The International Classification of Diseases—ICD-6—published by the World Health Organisation (WHO) in 1948, termed the symptoms as mental deficiency.The ICD is a global standard diagnostic tool. It is upgraded at an interval of 10 to 30 years. When ICD-8 was published, "mental retardation" replaced "mental deficiency". Over time, experts opined that the term "mental retardation" was pejorative, so it was replaced with 'Intellectual Developmental Disorder’ in ICD-11 which came into effect in 2022. However, in India, the term 'intellectual disability' was recognised a decade ago when the Indian government replaced The Persons with Disabilities Act 1995 and brought The Rights of Persons With Disabilities Act in 2016. The Rights of Persons With Disabilities Act, 2016, defines 'intellectual disability' as a condition characterised by significant limitation both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behaviour, which covers a range of every day, social and practical skills.In India, the last census of disabilities was conducted in 2011 when the general census was done, but at that time the government used the term mental retardation for intellectual disabilities. According to the 2011 census, about 2.68 crores persons were enumerated as disabled and six percent of them were mentally retarded.Bihar is home to 23.31 lakh disabled persons which is 2.24 percent of total population of 10.42 crore. About just 0.1 percent of them are intellectually disabled. Lack of Awareness Worsens Quality of LifeIntellectual disability is a non-curable impairment, but intervention in early childhood can help to some extent, according to the WHO. Researchers agree to this. “Identifying difficulties early in childhood and using evidence-based approaches to address those difficulties has the potential to deliver significant social and economic benefits," D Susheela Narang, principal at Kenway College of Education in Punjab, writes in her research paper published in the International Journal of Research and Analytical Reviews. She further wrote, “This is particularly true where problems are likely to escalate over time; limit the life chances of the individual, and result in significant costs to society. The rationale for evidence-based early intervention (both early in life and early in the onset of problems) is now widely accepted as part of public policy in the UK and beyond across health, education and social care.” But, ironically, most parents in Bihar either don’t understand the problem at an early stage due to a lack of awareness or consider the early symptoms as normal.Even a year after his birth in 2005, Kunal was unable to sit or stand on his own, but his mother Kavita considered this normal. "I thought some children take longer to sit or walk, so perhaps Kunal would start walking after a few years," she says. She waited for six years, yet he still could not walk; he would take a few steps and then fall.She says, "I first told my husband that the child needed to see a doctor. He told me to ask my in-laws. When I did, they flatly refused, saying that many children started walking late and he didn't need any treatment." "Garjian ki kamjori se ilaaj nahi hua (The treatment didn't happen due to the guardians' negligence)," she added.Distressed by her in-laws' indifference, Kavita left their home and moved into a rented room in Jehanabad with her child in 2017. Within a few weeks, the first thing she did was take Kunal to a doctor. This means that until 12 years after birth, Kunal lived without any special care. Sunil Jha, co-founder of the Seven Colors Welfare Society"Due to the lack of awareness, people often fail to recognise the problem initially. If symptoms of intellectual disability appear, guardians mistake them for mere behavioral traits. If the issues escalate, they turn to traditional healers or occultists. Then they visit quacks, and only when the situation spirals out of control do they finally consult a qualified doctor. This leads to a significant delay in the patient receiving proper medication."The Seven Colours Welfare Society is a non-profit, non-governmental organisation that conducts monthly mental health camps in Paliganj, where mentally and intellectually impaired patients receive free consultation. Over the past year and a half, the organisation has provided treatment to 369 people, seven percent (25 cases) of whom had intellectual disabilities. Jha explains, “These figures reflect a situation where our camps receive patients only from Paliganj and the adjoining districts of Arwal and Jehanabad. In most cases, we have observed that guardians identify the condition quite late; and even when they do, they have often already faced disappointment after consulting traditional healers and quacks.”Not only does the lack of awareness lead to late recognition of intellectual disabilities, at times, it even forces patients to live in inhumane conditions.Disability Day: 'Don't Give Us Your Sympathy, Give Us Our Rights'A Life in ChainsTwenty six-year-old Amit Kumar (name changed) is tied with an iron link chain around his leg, as if he were an animal, at his home in Paliganj. Wearing just an untidy half pant, he looks fragile. He does not resist the chain. Saliva keeps dripping from his mouth. He looks at every new person coming to his home with curiosity, but does not talk clearly. He remains tied like this all day and untied at night when he sleeps, and then re-tied in the morning. The chain on one leg causes injuries, so the other leg is re-tied.Amit Kumar’s leg tied by an iron chain.His mother, Kunti Devi (name changed), says that he suddenly disappeared from home seven years ago, which is why he is kept tied. “Kisi ko maar-peet dega, kuch nuksan kar dega to woh log humse ladai karenge isliye bandhkar rakhte hain (If he beats someone or damage something, people will fight with us, that is why we keep him tied),” she says. Amit was born at home. Local dai (midwives) had assisted in delivery. He had not cried during birth, but the family didn't see any abnormality in it. One day, when he was seven, Amit developed diarrhea. His condition worsened, so he was taken to a local private hospital.There, he began to jump around on the bed, but somehow, he was given some medicine and saline, which helped him recover. After returning home, he would occasionally scream, tear his clothes, and sometimes throw up food. But the family never believed he was sick. “We thought he was acting like this because he was a child,” says 45-year-old Kunti. She belongs to the baniya caste which is included in Other Backward Classes (OBC).After he disappeared in 2019, and was found only 12 days later in Karpi, 17 kilometres from his home, he has been kept chained ever since. After the escape, Kunti realised Amit was "abnormal" and needed treatment.According to the WHO, intellectual disability can be caused due to many reasons like down syndrome, brain malformation, maternal disease, and environmental influences (such as excessive alcohol use by the pregnant mother) or infection during pregnancy. Apart from this, if oxygen does not reach the baby properly during birth and delivery, it can also cause intellectual disabilities. After birth, infections like meningitis, whooping cough, or measles, severe head injury, and other factors can lead to impairment, notes WHO.These causes can often be identified at an early stage as grassroots-level workers like Auxiliary Nurse Midwife and ASHA workers within the community deliver maternal, child, and community health services. Dr Manisha Krishna, however, says, “There is a huge gap in awareness even among ANM and ASHA workers.” She is the secretary of Utkarsh Seva Sansthan, which runs a centre for intellectually disabled. She emphasises on extensive training of grassroots health workers to identify intellectually disabled children.Dr. Manisha Krishna"These grassroots workers should be trained and given developmental charts. These charts should also be given to parents. They should note down developmental indices of children and if indices indicate intellectual or developmental issues then the children should be referred to primary health centres or Buniyad centres."Buniyad centres are run by the state government which provide physiotherapy, medical advice, as well as help in obtaining disability certificates. Psychiatrists opined that medicines do have not much role in intellectual disabilities unless individuals have mental health issues as well. “In 25-30 percent of intellectually disabled persons, there are co-occurring mental disabilities. So they need medicine for mental issues,” Dr Sachidanand, a Patna-based psychiatrist, says.“It is a life-long complexion. Improvement is possible in less than five percent cases.” Thus, he says, “Instead of medicines, they need special care and skill development so that they can somehow lead a life.”Doctors to ExorcistsIn most of the cases, families with intellectually disabled persons run from one doctor to another, to quacks and exorcists, losing thousands of rupees and time.Since 2019, Kunti has taken Amit to at least half a dozen government and private hospitals, but there has been no improvement.In 2022, she consulted an exorcist, who charged her Rs 5,000 and asked her to make Amit sleep under a peepal tree for nine days. She did so, but even then, there was no improvement. She wasted nearly Rs 1 lakh on doctors and exorcists. After this, she gave up on treatment. “I am poor, where will I get so much money for treatment,” she asked.Similarly, Kavita first took Kunal to the government sub-divisional hospital in Paliganj. But the doctor refused to give any medicine. “The doctor said nothing had happened to him and didn't prescribe any medicine, just advised him to exercise,” Kavita Devi recalls.She then went to Patna AIIMS, who advised her to visit the Paliganj hospital again, but the doctor reprimanded her asking why she kept returning when Kunal had no issue. The doctors there asked her to go to IGIMS. A week later, when she went to IGIMS Hospital, the doctors insisted she get her son treated at Paliganj Subdivisional Hospital. IGIMS officials confirmed the same. But, she says, “I did not go to the Subdivisional Hospital because the doctor had scolded me.” Umashankar Prasad, deputy superintendent of aliganj sub-divisional hospital justified the referal of intellectually disabled patients. "Intellectual disabilities are related to neurology but our hospital has no neurologist so we have to advise patients to visit IGIMS or Patna Medical College and Hospital (PMCH). You will not find neurologist at even district government hospitals."Dr Rajesh Kumar, professor at department of psychology at IGIMS, dismissed allegations that the institute denied treatment. He said, “We don’t deny treatment of intellectually disabled patients, but the fact is that there is no definitive treatment of such patients because their brains are not properly developed.” He added,“I think they must have come for UDID, which we don’t issue. We only assess the percent of disabilities and issue assessment certificate for UDID but patients have to get the UDID form sub divisional hospitals.”Patients at mental health camp in Paliganj.An Open Letter to India: Embracing Real Freedom for Persons with DisabilitiesInstitutional SupportThe intellectually disabled are entitled to get benefits of all the schemes available for the impaired, like pension, loan for establishing their own business, and reservations in government jobs, among others. But to avail these, they must have a Unique Disabilities ID (UDID).For UDID, disabled persons need to get an assessment report prepared by expert doctors, who will confirm 40 percent or more than 40 percent disabilities. But for intellectually disabled persons, getting the UDID is an arduous task in Bihar. Amit Kumar's assessment report says that he has 75 percent disability. The benchmark disability is 40 percent.The Union Ministry of Social Justice and Empowerment in its gazette notification issued in 2024 has laid down guidelines for assessment of the extent of disabilities for the issuance of UDID. The guideline says that there should be an assessment board in every district and a medical superintendent, or the chief medical officer or civil surgeon or any other equivalent authority as notified by the state government shall be the head of the board.The board shall comprise of pediatrician or pediatric neurologist (where available) or developmental pediatrician (where available) or physician (if age is below 18 years), psychiatrist or child and adolescent psychiatrist (where available) and clinical or rehabilitation psychologist.The guideline further says that in view of shortage of specialist doctors, private medical practitioners can be included as board members. But, district level assessment boards are almost dysfunctional, leading to a huge pendency.According to the data available with the UDID website, run by the Union Ministry of Social Justice and Empowerment, Bihar has 1,28,047 applications pending for UDID, which is the second highest after Uttar Pradesh, which has 1,57,623 applications pending. The website does not have disabilities wise data. In February this year, the Bihar State Legal Services Authority (BSLSA), in its inspection report on the shortcomings of mental health facilities in Bihar, had found that the UDID issuing mechanism was not in place. In its recommendation, the BSLSA suggested that the state must establish a fast-track medical board to issue UDID cards for patients suffering from chronic treatment-resistant mental illness or intellectual disabilities, so that they get government benefits. The Patna High Court had initiated suo moto public interest litigation on the basis of the report. The Lived Reality Bhawesh Jha, a mental health activist and member of the State Mental Health Authority, says, “Getting UDID is a tough task in Bihar. I could not obtain a UDID for my brother who is suffering from obsessive-compulsive disorder.” He added, “There is no mechanism in place in the districts for obtaining a UDID for intellectual and mental disabilities. Only one government hospital, that too in Patna, issues an assessment report." “Whenever authority meetings happen, even top officials complain that they get huge appeals for UDID, which means that UDID is not being processed at designated health centres,” Jha says. Both Kavita and Kunti had to run from pillar to post for months to obtain UDID for their sons, but they failed. Kunal has now finally got his UDID albeit with the help of grassroot workers, whereas Amit has got an assessment report after making multiple travels to a couple of government hospitals in Patna.Patients taking medicines at mental health camp.But for the last month, a team of doctors at Subdivisional Hospital in Paliganj has not come together which is why his application remains pending. The lack of a UDID and the subsequent benefits of the government scheme is leading to an economic burden on the families.Kavita’s husband Meghdoot Pandit (name changed) works as a labourer in Delhi but does not send enough money, as she had to come to Jehanabad against his wishes. She said, “He sends money for the children's education, but not for running the household.” Although she has a matric education, she cooks in a private home and tutors some children to help cover family expenses. She says, “This is how we are somehow surviving.”On the other hand, Kunti and her husband Dinanath Sah (name changed) are farmers taking half bighas of land on lease. A disability pension of Rs 1,100 per month would certainly provide some help to the family. She is concerned about Amit’s future. “Abhi to hum jinda hain to dekhbhal kar rahe hain, lekin hum mar jayenge to iska kya hoga usko lekar chinta mein rahte hain (Right now we are alive so we are taking care of him, but we worry about what will happen to him once we are gone),” she says.(Umesh Kumar Ray is an independent journalist covering news and politics from Patna, Bihar. This story was supported by the International Foundation for Disability Inclusion’s Journalism Fellowship on Disability Inclusion.)