Disabled And Helpless
– Dr. Poonam Nayak
January 2019 – A patient had been referred to the surgery department for a consultation. A 55 year old with a long standing history of diabetes mellitus, he had developed an unmanageable infection to the right foot, and was being considered for amputation. The relatives were understandably distraught, although little did they know a successful surgery would only be the beginning of a long, arduous journey involving multiple medical visits and physiotherapy.
The patient is not alone. According to the census, about 21 million people are suffering from disability (seeing, hearing, speech, mental, movement) in India, with the greatest population living in the rural areas . Despite this skew in the disabled population, the facilities present for this group are skewed towards the urban crowd. From physical barriers, to social and even mental barriers, the disabled not only have to navigate through a labyrinth of hurdles in their day to day lives but also at a healthcare facility where they are susceptible to micro-aggressions from the staff, pity but no real assistance and inaccessible facilities. Because the majority population belongs to the rural areas with limited resources, there is a lack of awareness and utilization of the available rehabilitation services in the country which leads to poorer outcomes overall .
The main issues faced by the disabled at a healthcare facility are:
- Lack of access and poor quality of care
- Inappropriate considerations of physical needs
- Social stigma amongst the healthcare workers
- Lack of knowledge of the providers
- Mental health care targeted towards disability and care
Lack of access to quality healthcare is causing nearly 2.4 million deaths. With the disabled belonging to an older, poorer and rural population, the healthcare available is often either government-funded or voluntary aid. Despite advances in medical technology, gadgets and treatments, and despite India being called the pharmacy of the world; the access to quality care, surgical procedures, physiotherapy and medications is limited to the fortunate few. Although most disabilities can be prevented with proper preventative and rehabilitative care, it is estimated only 2% of the population have access to appropriate services . Legislation and infrastructure needs to be built to make better commodities available to the patients, especially in the rural communities.
Physical barriers to accessing healthcare is another reason for reduced utilization of healthcare amongst the disabled. The Government of India launched the “Accessible India Campaign (Sugamya Bharat Abhiyan)” in 2015 to provide universal accessibility for persons with disabilities. While an ambitious project, it has been slow to see success. Most hospitals lack functional elevators, wheelchair ramps and handicap-friendly toilets. The resources were scarce prior to the pandemic, but with the covid-19 battle ongoing, it has become tougher to access health due to physical barriers. The blind and the wheelchair bound are hesitant to leave the house and use public transport. At hospitals, more and more healthcare assistants are wary to extending a hand to help the handicapped for fear of contracting the virus, and the patients are left fumbling along unknown corridors, left to their own devices. The government has been slow to release guidelines for covid-19 in braille and sign language. The mentally disabled are sometimes unaware of the gravity of the circumstances and healthcare workers are hesitant to provide help.
The most concerning factor, however, preventing the disabled from accessing healthcare is the social stigma and the ignorance they face from the healthcare workers. Although it is required by a doctor to provide unbiased care to those who seek it, yet, more and more disabled patients complain that the doctors favor the able. Whether it be due to burnout or ignorance, healthcare workers are wary of approaching the disabled. Medical curriculum needs to be geared towards preparing the students to manage all kinds of patients. Sometimes, it can be as easy as preparing the intern/ student interacting with a disabled patient with their history and disability to prevent unfortunate mishaps such as asking a blind person to read. Other times, a more in depth evaluation of the student’s emotional IQ, as well as presentations and increase in exposure to patients with various disabilities to help the future doctors understand the topic of disability in depth. Finally, most healthcare faculty (doctors, nurses, aids) shy away from helping the disabled because often they have complex physical, mental, socio economic issues that may take longer to sort through. Setting a network amongst the various medical disciplines with boundaries and extent of services provided by each will prevent the burden from falling on a single physician, and hopefully encourage better care.
Mental health and disability often go hand in hand. The patient not only has to face the physical handicap, but also face the mental and emotional challenges. A disability can lead to social stigma to the entire household. The patient has to face pity from the people around them. Because mental health is still considered a taboo, many mentally disabled patients hesitate to seek care. To combat this particular issue, it is important to target the care provided at the roots. Medical students must be sensitized to the topic of mental health early in their curriculum. In order to improve the awareness amongst students and the community alike, the community medicine department can have mental health awareness weeks where the students understand the community’s idea of mental health, their superstitions and their hesitancy, so that they can build further on the knowledge base and provide superior mental and emotional care to the community. Also, with lectures and presentations given by the students, the community can be made aware of the resources available to them. Counseling and support must be routinely provided to patients undergoing amputations, or at a danger of losing sight or hearing so that they are emotionally and mentally ready to face the challenges that lie ahead of them.
Much needs to be done in providing care for the disabled. With the gap between urban and rural healthcare, and the gap between public and private sector provided care increasing – efforts need to be taken by the legislative body and medical fraternity to provide universal care for everybody. After all, we take the hippocratic oath to serve the sick. With extra care and attention to help the disabled, it is time we fulfill it.