Is there a difference in the way a total blind person adapts to his environment and the way a low vision/progressive vision loss patient relates to his surroundings?
The answer is yes. Traditionally, our rehab and support systems have treated all visually challenged persons as the same. As a result, the services provided to them have remained the same. Be it orientation and mobility or assistive technology, our rehab professionals both on the health and social sectors failed to understand the unique needs of low vision and progressively vision loss patients so far.
Of course, lack of manpower and resources in the disability sector meant there is very little possibility of providing personalized services to nearly one million R.P. and millions of other retinal diseases patients. However, it is unfortunate that our public health care system, with its seemingly limitless financial resources, pays little or no attention for rehabilitation of patients such as those suffering incurable conditions like R.P. There is no clarity on who should shoulder the cost/manpower needs of rehabilitation in the case of incurable vision conditions. Health sector, besides looking for cure in terms of research/infrastructure, should also address rehabilitation of patients with incurable conditions since it is imperative for a society dependent on human resources for economic growth to keep its assets productive. I am not trying to generally speak about rehab here, but am considering only the rehab needs of retinal disease patients. Surely, this would apply to other disease/disability categorizations as well.
It is harder to say if there is room for change in idea on rehabilitation after the new government takes over post the general elections. But it is vital to find representation in the planning and deliberation process and influence the government to consider rehab as part of the health sector plans. This would also provide doctors and other medical workers to join the wider process of helping patients bounce back from unexpected impacts of progressive blindness.
Participation of medical and health workers would make community based rehabilitation more effective, especially ensuring those with progressive blindness in rural areas and their families overcome psychological impacts and look at the future with hope. Any wider system of rehab for progressive vision loss patients must therefore include everyone concerned from patients, families, health/social workers, doctors and even planners. It is harder to say if our health and social sectors would rise up to the challenge of sudden and progressive vision loss, especially given the widespread prevalence of diabetes that affects nearly 10 million diabetic patients with Diabetic Retinopathy.
Put together, retinal diseases alone are likely to impact nearly 20 million people in India, half of whom would be Diabetic Retinopathy patients.
Our health sector should stop letting people think blindness as hopelessness, but by supporting effective rehabilitation methods, it should reinstate hope in the hearts of people, if not restoring the light of vision in their eyes.