Renewed demand for spinal cord injury to be a separate disability under RPWD Act
25 June is marked as Spinal Cord Injury Awareness Day by the NGO Nina Foundation which is working towards spreading awareness and empowering people with this condition. Over one million people in India are affected with thousands more added every year. Many organisations have demanded that spinal cord injuries be treated as a distinct category under the Rights of Persons with Disabilities Act.
Over 20,000 people are affected with spinal cord injuries every year in India. The number of affected people is higher than those with Thalassemia, multiple sclerosis and muscular dystrophy.
Yet, while the last three disabilities command separate listing in the Rights of Persons with Disabilities (RPWD) Act 2016, spinal cord injury is clubbed under multiple disabilities or locomotor disability. Unfair, say experts and patients as there are over 1.5 million people affected.
Spinal cord injury has multiple impact
On Spinal Cord Injury Awareness Day, a new petition and public awareness campaign has demanded this be changed. An appeal has been made to Prime Minister Modi by Nina Foundation which works towards spreading awareness and empowering people with this disability.
Given the multiple ways spinal cord injury affects a person, it is unfair to club it under multiple disabilities, says Dr Ketna Mehta, Founder-Trustee, Nina Foundation.
Spinal cord injury affects the nerves, movement, sensation, bladder, bowel, bones, respiration, skin, fertility and sometimes causes psychological effect. Rehabilitation is a precise field with specialised medical team and assistive technology designed to empower and equip the injured. Secondary complications can be financially sapping. I hope these factors will galvanise the government to acknowledge SCI as an independent disability and frame policy guidelines. – Dr Ketna Mehta, Founder-Trustee, Nina Foundation
Other organisations like The Spinal Foundation in Tamil Nadu have raised this demand as well in the past. It has specific resonance in India which reports the highest road accidents in the world. Road accidents, along with falls, is among the major causes of spinal injuries.
Spinal cord injury needs lifelong therapy
Most of those affected are between 19 to 34 years, the most productive category. The disability is permanent and must be managed with lifelong therapy and rehabilitation.
Shishir Bhatnagar, a nautical consultant in New Delhi, believes there is a strong case for categorising it as a separate disability.
“You get a lot more benefits from the government”, points out Shishir, who sustained a spinal cord injury in his late 20s. “Now it comes under locomotor disability which means we don’t get many of the government benefits. During the COVID-19 pandemic for instance the government has exempted people under certain disability categories from coming in to work. But this does not apply to people under locomotor disability category where we are listed So many companies are not granting this benefit to people with spinal cord injuries”.
Spinal cord injury affects more than just the physical. The World Health Organisation (WHO) calls it the ‘most devastating permanent disability’. Patients’ lives can be significantly improved with rehabilitation and support and with many of those affected in the prime of their lives, the government must consider this appeal.
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