Changing disability to this-ability
In 2010, my son who has Down’s Syndrome (DS), spent his first birthday in an Indian hospital due to severe pneumonia. During late evening of the same day, some sisters from the Missionaries of Charity brought an abandoned newborn boy for treatment.
The hapless infant, also with DS, was placed two beds away from ours. He did not live to see the next morning. A nurse, even while attending to my son with care, saw nothing wrong with saying that the baby was “mentally retarded”.
Fast forward to early 2020. A well-established lawyer abandoned her newborn daughter, with DS, in a state-of-the-art hospital in Nepal. All counselling failed to convince a supposedly educated mind. The infant remained abandoned till a charity took her in its care.
Looking after persons with disabilities involves sensitivity, hard work, some sacrifice of time and freedom, money, right education and the will to fight stigma. It is easier to abandon them instead of working to make the children self-sufficient and including them in all activities.
December 3 is International Day of Persons with Disabilities, and the theme is ‘A Day for All’. Facebook and Instagram will be flooded with posts cheering the cause. And why not? It is one that calls for attention.
However, when we post, do we really consider those with disabilities as an integral part of “us all”? Very few of us think of making life easier for those with special needs or disabilities, unless we know someone personally.
How many of us change or adjust our daily actions in order to change ‘disability’ into ‘this ability’? Alas, only a handful of us, especially in developing countries.
It is not by chance that persons with disabilities are more visible in developed countries than in developing economies. There are actually more people with disabilities in poorer parts of the world, their numbers are grossly under-reported.
Disability encompasses not just those who are born with disabilities, it also includes the elderly and the injured. Yes, it can be you and me when we get injured or old. It is our old parents too.
There are three main reasons why people with disabilities remain out of sight in developing countries:
- Stigma: Most physically and mentally challenged people suffer from loneliness and depression due to the stigma attached to their state. There is rampant discrimination in the way general public treats these people. Illiterate or little literate poverty-stricken parents find it difficult to understand and tend to the special needs. Often persons with disabilities are looked down on or made fun of and social acceptance becomes difficult, sometimes even for the families. Families then find it easier to hide or lock them up. There are instances of violence against them, especially against girls and women. Discrimination also surfaces in schools and workplaces where people with disabilities, of all genders, are either not understood or exploited and abused. Stigma does not stop them from getting raped. It stops them from getting social acceptance. Earning a respectable livelihood is difficult.
- Poverty and Education: Providing proper care, counselling and medical treatment, hiring trained caregivers, and even basic education is unaffordable for many parents. Although there is a legal provision for education that supports inclusive schooling, its implementation is far from satisfactory. Apart from a few schools in the cities, there are few inclusive educational institutions with trained therapists. Schools with suitable facilities are far away from villages, have limited seats, and are usually expensive. Frequently, the afflictions are identified quite late in the children’s lives. They go to regular schools where the staff and peers misunderstand them, and subject them to discrimination and ignominy. The parents then stop the children from attending school or playing with others.
- Public Infrastructure: The government’s apathy towards such persons is clearly evident in public places and transport systems that are not disabled friendly.
- There are laws safeguarding rights of persons with disabilities, but most do not sue for their rights. Many are not even aware of their rights, and legal cases are costly and long-drawn affairs.
- Roads, footpaths and parking lots are laid out without any consideration for those with disabilities. In fact, many roads are not even motorable. Footpaths are too high or broken even for enabled people, and too congested for easy movement of those who are blind or wheelchair-bound. Ramps are almost non-existent. A self-maneuvered wheelchair will never be able to negotiate the few steep ramps that have been hastily constructed in some areas. Some shopping malls, hotels and restaurants are becoming more mindful, but there are hardly any accessible parking lots.
- Though the public transport system of buses, trains and trams have designated seats for persons with disabilities, these are often occupied by a callous public. For most persons with disabilities, boarding and alighting from these independently, is extremely difficult.
- Public toilets are strictly for the use of non-disabled adults. Few architects ever think of how children or people with disabilities will use them.
Where we have not been able to provide basic amenities and security to persons with disabilities, how can we celebrate ‘a day for all’? They will keep being abandoned until we resolve to correct our mindset.
Educate people, in general, to be more aware of and be sensitive to the difficulties of people with para-abilities. The fear of hurting sentiments by saying something wrong stops us from talking about disabilities. We need to inculcate the courage to discuss the ailments, affordable cures and therapies.
It is not wrong to have a mental or physical difficulty. It is wrong to ignore, neglect and abuse the vulnerability stemming from such a difficulty. If the policymakers ensure implementation and the public practices what is taught, then there is still a hope of changing disabilities into ‘these abilities’.