Opinion For persons with disability, a daily tryst with hostile spaces, lack of empathy

I’ve been living with Neuromyelitis Optica Spectrum of Disorders or NMOSD for the last seven years. Having NMOSD means that the affected area of the brain experiences inflammation and the person experiences loss of function in the impacted area. In the person affected, this could mean anything, from total blindness to intractable hiccups. It is a life-long illness for most, with acute relapses which, if left undiagnosed and untreated, could mean permanent damage. Besides causing disability in the form of temporary neurological impairment, NMOSD is accompanied by an array of other issues, including psychological, cognitive and urological ailments as well as hyperglycemia, cardiovascular disorders and other autoimmune comorbidities.

According to a 2015 study by the National Centre for Biotechnology Information, NMOSD accounts for up to 13.9 per cent of inflammatory demyelinating disorders of the central nervous system (CNS) in the Indian population. Yet, in the last seven years, I have rarely met a non-neurological health professional who has heard of the condition or understands it. Despite its debilitating, disabling nature, it neither finds mention in the Rights of Persons With Disability Act 2016 (which is nonetheless radical in its attempt at expanding and reimagining “disability”), nor is there a consensus within the neurological community on its treatment. The patient is ultimately left at the mercy of their treating physician.

Disability is defined by the Centre for Disease Control as “any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them.” Such a definition places the onus of experiencing disability upon the individual rather than the socio-cultural and physical environment that either creates or accentuates the experiences of disability. In fact, WHO’s understanding places the onus on precisely these factors as it notes that “disability results from the interaction between individuals with a health condition with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.” Acknowledging the role of an inaccessible society in creating and magnifying disability is crucial in meeting the goal of equity for the disabled. In thinking about those with disabilities, for most of us, a wheelchair-bound person is the beginning and end of our imagination. Yet, with chronic illnesses such as mine, the lines between disability and functionality are blurred — compounded by the apathy of the state and reinforced by that of the medical community. Locomotive disability is only one of the many ways that disabilities manifest.

Yet, public spaces do not exclusively remain inaccessible on locomotive grounds. For instance, people with Crohn’s disease or urological conditions may restrict their movements on account of poor accessibility to restrooms or lack of cleanliness and running water. These are easy-to-fix issues. What is lacking is the will.

A more challenging task is making educational institutes and workplaces accessible to neurodivergent people and those experiencing psychological and cognitive disruptions. For these, we require imaginative solutions and a radical shift in attitude.

Also important is a shift in the attitude of the medical community. This has great transformative potential. More often than not, when I visit a doctor, I have found that they would rather keep asking me questions than listen to what I have to say about my condition or respond to my concerns. Whenever I have been able to ask a question or wanted to decide how my condition should be treated, I’ve got two kinds of responses — infantilisation: “You are not capable of understanding these medical things”; or dismissal: “You are reading too much into your own experience”.

I have lived with my condition for over seven years and it is likely that I will live with it for the foreseeable future. Over the years, I have evolved a certain intimate understanding of the illness. While I have been privileged to have access to a few understanding and kind doctors, I’ve also experienced what it is like to be at the mercy of my treating physician. And it is in these moments that I experience true helplessness.

The harsh truth is that we are all a diagnosis or an accident away from a life of temporary or permanent disability. In fact, mounting evidence points to the growing burden of non-communicable diseases on populations worldwide. It is imperative that we commit ourselves to the task of social re-engineering to ensure inclusivity. The state must commit itself to policies that truly capture the dynamic nature of disabilities and the medical community must see patients as not just objects of investigation — but as persons capable of understanding their conditions and making decisions about treatments.

The author is an advertising professional and freelance writer