“As she went out with her friends for dinner, it suddenly dawned on everyone. There was no ramp leading up to their restaurant. Only steps. Her wheelchair could not walk up steps. She either had to be physically carried up the steps, or they could look for another place with a ramp - which probably didn’t exist.”
This is my recollection of a passage written by Ashla, a beautiful young woman – articulate, educated and gainfully employed. There was just one problem: she could not move her legs, and spent a lot of her life on a wheelchair.
She did not want to burden her friends or the hotel waiters into carrying her inside the restaurant.
If only there was a ramp!
Why did we, a civil society, leave her out?
Ashla did not want anyone in society to feel sorry for her. She did not need sympathy. In fact, she would rather stay away from sources of sympathy.
As there was a physical limitation, all that she needed the world around her to do was to acknowledge that she existed. That she had needs, desires, ambitions like anyone else. A little bit of empathy would have made her world a lot more cheerful.
A large number of people with disabilities live around us. This article is written for non-disabled people to better understand the world of a person with disability. As infrastructure and law are beyond the scope of this article, it will focus on what each one of us can do to make the world a better place for them.
What is empathy?
Many people confuse sympathy and empathy: similar-sounding terms.
Sympathy is when we feel sorry for someone. In this situation, it is sometimes displayed through thoughtless pessimistic ramblings such as: “Ohhh!!! This is so sad!! How could such a thing happen to someone like you? God must be so cruel! Look at you - he gave you such a beautiful face, but is making you crawl like a lizard!”
Empathy is our ability to see the world from the other person’s shoes. In the given case, it refers to our acknowledging that there is a limitation, but without unnecessary emotional overtures.
The empathetic person understands and respects the person’s physical limitation, and graciously offers to help in any way he can, without being overbearing. He does not make the person feel small and weak. He treats the person as an equal - with respect, and with dignity.
He might just say: “Hello, is there anything I could do for you?” or “Would you like me to hold that door open while you get inside?” “Let me help you cross the street, it looks busy today. You may take my arm if you wish.”
If the person were to refuse help, as often happens, the empathetic person would gracefully fade away, no questions asked - and nothing owed.
Empathy has been called the “building block of morality” and is the basis of good communication, listening and leadership. It is an essential life skill for any human being.
What’s the right word?
It is important to avoid negative and condescending terms while discussing disability.
What is the right word for disability?
Terminology changes with time; and is a matter of much debate. ‘Person with disability’ is the contemporary term for the disabled. Some prefer to say differently abled. The term handicapped has been discarded.
There is emphasis on addressing the person first rather than the disability. For example, when we casually say “a blind person” we focus on his impairment first. However, when we say “a person who is blind” we give greater importance to the person.
However, more than updated English terms, what the disabled want more in a developing country like India is empathy from society, and infrastructure development that will not only improve their mobility, but also provide a realistic chance of making a decent living.
What is it like to become physically disabled?
Acquired permanent physical disability is something that is so common, it could happen to anyone at any time. From the minute a person becomes disabled, the world changes completely as in: life before the event, and life after the event.
Depending on the nature and severity of the impairment, the person goes through grief, anger, depression and finally acceptance. Assuming prompt delivery of healthcare, the person reaches an optimal stage of physical recovery at some point. For example, vision or limb strength.
Mental recovery, however, is variable. Some people recover fast, others take more time. Much depends on the personality and basic philosophy of the person before illness struck. A substantial role is played by society, family and friends. Many become wiser through hardship, and even discover true happiness in spite of physical illness.
There are instances of people finding strength and solace in prayer. Then there are those who develop meaningful relationships which help them emerge stronger than they could have otherwise. Others muster up a calm determination that makes them learn new skills and knowledge that eventually help them rebuild their careers. There are examples of people with quadriplegia becoming artists and architects.
The journey after the event is not easy. They find that many of the friends who they always hung out with before the event were never seen or heard from afterwards. They also discover new friends in their second life - people whom they never met or thought much of earlier. Peer groups exist, which are a great resource and support.
There is considerable variability in the way disability is perceived in different cultures. In India, many people believe that it is an act of fate, which helps the family accept the event - and brings closure. It has been a consistent observation in India that the care of the disabled family member is thrust on to the women in the family. The paper written by Pinto and Sahur provides a fascinating insight into the cultural aspects of disability at grassroots level in India. (see further reading section)
What the non-disabled people could do to help
For the most part, people are nice to those with disabilities. In everyday life, many people go out of their way to help strangers, whether they have disability or not. It is this innate goodness of the heart - which goes largely unnoticed - that sustains human existence on the planet.
There are occasions when onlookers fail to provide the required assistance to such a person. The reasons for this are many. In a public place, people could be absent-minded or in a hurry to get someplace. Such people may fail to notice the presence of a person who has special needs. There are many who have never interacted with a differently abled person – whether at home, school or at work – and may not know how to approach them. Such people might shy away from the situation.
Then there are some who have a negative attitude to those with physical or intellectual disability. Unfortunately, a few people engage in actively insulting behavior, sometimes unilaterally declaring that people with disabilities should stay hidden in their own homes.
The following are some habits that will help us make this world a better place for those with disabilities. These are especially useful for those who have not had regular contact with such people.
1] Treat as equal: If we have a colleague or classmate who is differently abled, it pays to treat her as our equal in every aspect. People with disabilities generally do not want any sympathy - they would rather have respect. Once we get to know them, we could politely enquire about any assistance that they might require with their routines.
2] Be patient with them: Due to their physical limitations, they may take a little longer at certain tasks. Everyone gets only 24 hours in a day, and waiting a few extra minutes for a colleague to finish up will not really matter if we plan our day well.
3] Don’t talk down at them: Just because a person is on a wheelchair and is unable to stand upright, it should not be assumed that the person is also deaf and in addition, has problems with understanding. Often people talk down at them as they would talk to a three-year-old.
People of extremely short stature such as achondroplasia also suffer from such misconceptions and prejudice. It is good manners to sit down at eye-level while having a conversation with a person on a wheel chair. This eliminates the need for the person to crane her neck trying to look up at the speaker.
A common mistake that people make is to ignore the person with disability and talk only to the bystander. It is best to talk with the person directly. In this context, it is helpful to know that people with cerebral palsy can have an IQ that is higher than ours.
4] Never assume that they need our help: People with physical disability try to be as independent as they can. In our enthusiasm to help, instead of jumping in with what we think is a helping hand, it is better to ask first if they need help. If they say yes, then we must enquire about what exactly they would like us to do.
5] There is no need to shout: When talking to a hearing-impaired person, it is perfectly okay to speak in a normal voice and tone, but we must make sure they can clearly see our face. This is because a lot of their understanding comes from lip-reading. When talking to the speech-impaired, we must show the patience to let them complete their sentence. It can be rude to complete their sentences in our own words – although our intent might be good.
6. Offer your arm; don’t grab theirs: While trying to help the visually impaired, a common mistake by well-meaning people is to grab that person’s arm without asking. It is appropriate to offer our arm and let them use our arm as support.
7. Become the leader – at least for that moment: Be gracious while in public areas such as the lift (elevator) or with public transport, where a person with disability is also waiting in queue. Taking the lead and ordering the crowd to step back as the person gets in the bus or inside the elevator are simple tasks that each person can do. Why us? Because if we don’t take the lead, it is unlikely that anyone else will - and the person will be left waiting.
8. Avoid staring at people with special needs. Although staring at another person is considered rude in the developed world, unfortunately, it is still not so in India. A common grievance of differently abled people is that when they go to a public place, they get stared at, “As though I was coming from the moon” or “As though I belonged to the circus” (in their own words)
9. Give up a seat. Although as school kids we were taught to give up our seats when an older person or a woman got on the bus, this courtesy is slowly being forgotten. Instead, many people stare at their mobile screens or pretend to be asleep, remaining conveniently unaware of their surroundings.
10. Get children to mix. A differently abled child in the regular classroom, under the right guidance, is an opportunity for other children to become familiar with the child’s needs and develop empathy. It is also an opportunity for the child to mingle with and understand the other side of disability. Mutual respect is thus learned. Children are good-hearted and accepting of others’ shortcomings - more so than adults. Keeping them segregated will kill such opportunity.
11. Teach empathy in schools - and at home. Children can be given innovative and fun assignments specifically designed to develop the quality of empathy.
For example, they can be asked to write an essay about the life of a bee or a caterpillar in the first-person perspective. When they imagine themselves to be a bee, they will be able to describe the world through a bee’s eyes. They can describe how large a leaf, a flower or a drop of rain seems from the bee’s perspective, and the enormous effort required to bring a tiny drop of honey to the beehive.
They can later be asked to write or discuss in fine detail about the average workday of a traffic police officer, a hotel waiter, a teacher, a person who is blind, or a person with paraplegia - each of which will help them understand the world from another person’s standpoint. These can be family fun activities to do at home too.
At the end of the exercise, they will begin to realise that the world, as we know it, is after all an illusion – a product of our own mind, and that it is a different world for almost every living being out there.
The children will also understand that our own world can be transformed by factors within and beyond our control, and an unexpected disability is one such thing. This forms the foundation of empathy.
12. Spend time. Give them a call, just like that. We live in an increasingly materialistic world where friendships are shrinking into touchscreen icons - and phone calls or social visits are rarely done without distinct material benefits associated. However, it is still possible to be that one friend who would just show up for a cup of coffee together or for casual conversation.
While this is a good social habit overall as long as it is done without interrupting, it is more rewarding when it is done for a person with special needs. A conversation can sometimes heal better than medications. Just being there helps.
13. Be innovative and adaptive. A friend who has mobility problem would generally appreciate the opportunity to get out of the house, travel and visit beautiful places. Taking them on a trip with our regular friends is a great way to show that they belong, and that we care.
Likewise, a hearing or visually impaired person would have certain desires that could only be fulfilled with our help. It helps to be mindful of this and remain accommodative.
14. Recognize and treat early. Early detection, proper diagnosis and expert intervention helps children with disabilities do better in the long run.
15. Prevent accidents - use the road safely. Many disabilities are the result of careless and reckless use of the road – whether on foot or in a motor vehicle. Head injuries, limb fractures and spine injuries are important causes of permanent disability - among those who survive.
Although infrastructural and law enforcement shortcomings are a factor, the majority of road accidents are the direct result of human error - sometimes downright stupidity. This vast topic – what each of us can do as individuals to prevent road accidents - was covered in detail my earlier article.
16. Wear protective equipment: Paraplegia (paralysis of the legs) and quadriplegia (paralysis of all four limbs) commonly occur after falling from a tall building or tree, due to injury to the spinal cord. Those working from heights should therefore wear a protective belt or harness, and safety protocols must be enforced by supervisors.
17. While assisting a road accident victim, don’t make it worse. Many people with traumatic paraplegia and quadriplegia would not have become paralyzed had they been transported to hospital in a systematic manner. Often, clueless roadside rescuers drag and lift the victim by all four limbs, ‘bundle him up’ like a bag of potatoes, and frantically shove him into the cramped backseat of a waiting autorickshaw. Any partial injury to the spinal cord would thus become complete, which means that the person would never walk again.
If on the other hand the transport had been done with proper immobilization using a rigid stretcher and splints, even a slight delay in reaching the hospital would have been an acceptable trade-off. Investing in basic first aid training, CPR and trauma care are things that every responsible civilian can do as part of self-improvement.
18. Avoid stereotyping. Stereotyping refers to incorrectly labelling people based on one’s limited observations in the past. Society is quick to judge a person by external appearance. For example, just because a particular one-handed man happened to be a notorious criminal, it doesn’t make every one-handed man a potential criminal. The same applies to begging or selling lottery tickets. The fact that a few people with disabilities resort to certain means of livelihood should not affect the stature of others with similar impairment.
19. Give them a job. Many socially committed employers show the good heart to employ people with disability in their workforce. Minor workplace adjustments will be required, but people with disability frequently surprise their employers by squeezing extraordinary amounts of skill and reserve out of their intact faculties. Smaller businesses can reserve one position for a differently abled person. Laws and reservation quotas apart, it is our duty in society to give a hand wherever needed.
20. Build ramps. If we get the chance to construct or renovate a building, it is helpful to make it accessible to all, including those on a wheelchair. A ramp near the main entrance is as basic as a toilet in a building. Unfortunately, very few public buildings in India are wheelchair-accessible at this time. Disabled-friendly toilets and public transport are few and far in between. Owning a few wheelchairs makes no difference to a person with disability if there are no ramps, wider doorways, elevators or wheel-chair-friendly sidewalks.
1. Encourage assistive technologies. This is the year 2017, and the technology available today is far superior to thirty years ago. Investing in assistive technologies can bring out the best from visual and hearing impaired people, and is as important as providing educational opportunities on reservation basis. An example of assistive technology is that a person who is blind can now access the internet by a regular smartphone. She can even enjoy all the conversations in a WhatsApp group, simply by turning on the accessibility options.
In summary, there is a lot we can do to make this world a better place for those with disability. Put simply, it is by making them feel that they belong in this world – both through our words and actions. We fear what we do not know, and may be reluctant to help due to our ignorance. Therefore, learning the above-listed habits and etiquette will enable us to become more productive towards people with disabilities. Encouraging children to mingle with those with special needs is a great way of making better human beings out of them. Empathy training – the skill to put oneself in another person’s shoes - is a must for all human beings. More than comforting words, positive actions emerge from empathy – and it is these actions that make a difference in the end.
Disability & the Politics of Education: An International Reader edited by Susan Lynn Gabel, Scot Danforth
People with disabilities have the right to full and effective participation and inclusion in society, accessibility and equality of opportunity. Government of India passed the Rights of Persons with Disabilities Act, 2016.
(The author is a senior consultant gastroenterologist and deputy medical director, Sunrise group of hospitals)