by Abha Khetarpal
The COVID-19 pandemic has disconcerted everyone on this planet. Varied scales of interventions, strategies and manoeuvres are being initiated and tried in alignment with the evolving situation. But worldwide, a community that is facing the brunt of this public health crisis is the disability community. People with disabilities, more than one billion people all over the world, are feeling all the more marginalized and isolated. Their plight is even worse in low income and underdeveloped countries where healthcare access is a real challenge for them.
Persons with disabilities are in many cases more susceptible to coronavirus infection, but systemic discrimination against people with disabilities remains interspersed, from testing to treatment.
Having a disability doesn’t necessarily put someone at a greater risk of getting the infection, but in certain disabilities or chronic conditions, the contagion may prove perilous. Those who are undergoing post-polio syndrome may show drastic changes in lung function and are more prone to pneumonia. In musculardystrophy, progressive weakness of respiratory muscles can result in varying degrees of breathing difficulty. Respiratory issues after spinal cord injury (SCI) is more severe in high cervical injuries, with low lung volumes and respiratory muscle weakness. People with psychosis are linked with cardiovascular and respiratory diseases. Those who have immune system disorders like Multiple Sclerosis, Ankylosing Spondylitis, HIV/AIDS, Lupus, and Sickle Cell Anaemia are at a greater risk of critical illness if they get infected with COVID-19, because the virus attacks the immune system. Epilepsy, being a neurological condition, is also included in a list of conditions that may increase the risk of serious COVID-19 infection. Health alerts, advisories, and hygiene measures are not accessible to all.
As a person with disability with weak lungs due to post polio syndrome, I have my own fears. With increase in number of cases and threat of community spread, demand for medical supplies and ventilators is increasing, and in case of rationing of supplies or treatment, I could be on the losing side of a doctor’s life-or-death decision.
In countries like India, lack of testing, inaccessible testing centres, inaccessible pharmacies, and exorbitant cost of treatment pose a greater threat for people with disabilities. Quarantine facilities present many of the same concerns, in addition to high exposure to other people, presenting reinfection risks. Moreover, persons with disabilities in India are not covered by healthcare insurance, leaving them with no option but reduced or limited access to healthcare services.
Exposure to healthcare barriers has accentuated their vulnerability to infection and complications, putting people with disabilities in a catch-22 situation. Apart from the distress caused by the contagion, secondary health conditions of disabled people are being totally neglected. The greater the degree of inaccessibility, the more that additional health conditions are exacerbated.
“I am more prone to produce ear wax and normally have to visit a healthcare facility to get it removed. This time I could not visit my hospital due to the lockdown. My personal attendant tried to remove it at home with cotton buds but because of spasticity of my muscles, the wax was pushed deeper inside and created a blockage. Now I have developed hearing loss and the pain is increasing every day. At present, the hospitals are restricting visitors amid the pandemic. She is neither able to visit the hospital nor do I have any access to doorstep medical services”, says Meenu Mani Arora. She is a resident of National Capital Territory of India, and is a woman with cerebral palsy. She uses a power wheelchair and needs assistance in everyday tasks. Inability to get medical help even for a minor procedure has lead to her hearing loss and severe ear infection.
Necessary physical therapies and occupational therapies are not available during lockdowns, as these are not included in essential services. As for my personal experience, in the absence of physical therapy I feel greater muscle stiffness and lack of blood circulation in my limbs.
Persons with blood disorders and Thalassemia patients have faced an acute shortage of blood in the blood banks across the country as blood donation drives have been called off due to lockdowns and red zone areas.
From these examples, we can imagine the level of suffering and challenges faced by hundreds of thousands of persons with disabilities due to non-availability of adequate medical facilities.
Controlling contagious disease requires immediate access to care, and a minimum of red tape and affordability barriers. Article 25 of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) clearly mandates the State parties to recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without any discrimination.
The key learning from COVID-19 is the significance of a strong public health service. We need a more sustainable and accountable health system that serves us all.
Links to documents referenced:
Report: 1 billion people with disabilities globally
Human rights expert, Catalina Devandas
About the author
Abha Khetarpal is a Counselor, writer, motivational speaker, teacher, and activist with polio from New Delhi, India. You can find more of her writing at Point of View, Sexuality and Disability , Feminism India, Medium, and Youth Ki Awaaz.
Social Media profiles:
Abha Khetarpal’s Twitter: @Khetarpalabha
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