While Tamil Nadu chief minister MK Stalin welcomed Centre’s decision to exempt Goods & Services Tax (GST) on medicines for rare diseases such as spinal muscular dystrophy, some of the demands put forth by people with spinal injuries have gone unnoticed so far.
There are only a few organisations in India that work for the betterment of spinal injury persons. One such institution is Spinal Injured Persons Association (SIPA), which was founded in 2015. It has 2,300 members and a presence in all 38 districts of Tamil Nadu.
“One of the major problems people with spinal injuries face is bed sores or pressure sores, which happen because they are bed-ridden. If the sores are not treated properly, the patient may die. While the COVID was raging, many of us could not get adequate medical attention. A total of 35 people with spinal injuries lost their lives due to bed sores from January 2021 till date. Still there are about 240 people in need of treatment for bed sores,” said T Vandiathdevan, secretary of SIPA.
About 90 percent of spinal injuries happen accidentally, either by road accidents or by falling down from heights. Others may be caused due to congenital diseases. “A debilitating spinal injury may result in job loss for the person affected and prevent that person’s close family aid from earning because he or she has to take care of the patient. So the government should think of providing at least Rs 5,000 as monthly assistance to each one of us,” Vandiathdevan said.
Among other things, the government has identified people with spinal injuries as ‘people with locomotor disability’. “But they should be identified as ‘people with multiple disability’,” said Vandiathdevan. “It is widely believed that we have only orthopaedic disability, which means we cannot use our hands and legs. But that is a part of the problem. Other than that we have issues like neurogenic pain, heterotrophic ossification (growth of extra bones) and urinary tract infection among other problems,” he added.
The Federal learnt that people with spinal injuries are not identified as ‘people with multiple disabilities’ because the term ‘multiple disability’ means a person who has disabilities like ‘locomotor disability’, hearing and visual impairment, etc. “People with spinal injuries experience multiple complications. So it cannot be considered as ‘multiple disability’,” said an activist working for the differently-abled.
A neglected section
To be able to move around, persons with spinal injuries take support of battery-operated wheelchairs. However, most wheelchairs, given by the Tamil Nadu government, developed snags even before the expiry of the three-year warranty period. “We had asked the government to distribute battery-operated wheelchairs. The government accepted our demand and entrusted the responsibility of manufacturing it to a private firm. Each wheelchair cost Rs 75,000. The company gave three years warranty and said it has six service centres in Tamil Nadu. But no such centre exists. Fake addresses were given to us. So the wheelchairs are useless for us now,” complained Vandiathdevan.
Besides, the state also doesn’t have sufficient number of rehabilitation centres for people with spinal injuries. “Across the country there are just a few private rehabilitation centres. In Tamil Nadu, there is a government rehabilitation centre in Chennai, but it doesn’t care properly for the patients. The state also has three or four private rehabilitation centres such as the one run by Christian Medical College in Vellore. They are doing a good job. For a spinal injured person, rehabilitation is essential,” Vandiathdevan added.
Apart from rehabilitation centres, such people need separate care taking homes. One such private home is operational in Coimbatore sans any assistance from the state government.
“Male patients at least have their families to look after them. Most women patients become a burden for their families and are neglected. In some cases the families go to the extent of attempting to kill them,” he said.
S Namburajan, general secretary of the Tamil Nadu Association for the Rights of All Types of Differently Abled and Caregivers, said a separate probe is needed to look into the corruption in wheelchair distribution and maintenance.
“The spinal injured persons need attention not only from the department of differently-abled, but also from the health department. It is very sad to know that wheelchairs given to them have become useless for them,” he said.