It was while doing my early morning ritual of necessary news-trawling that I came across a name that sounds like my favourite colour. The story of 8-year old Safyre Terry is heart-wrenching. She lost her father, three younger siblings, and an arm and foot to a fire at their home. Having sustained 75 percent burns to her body, she has had 50 skin grafting surgeries so far. Her custody now rests with her aunt, Liz Dodler, who made public the child’s wish to receive 100 cards from all over the world for her Christmas tree. By the time I read the piece, she had already received 20,000 letters. I quickly began to scribble a note for her card, and mailed the article to my tier of best friends asking if they would like to send words her way.
The spectrum of reactions from my friends was vivid. In her ever-piquant sensitivity for the world, Ms.P sighed that she could not find the right words and was upset that people will turn it into a sympathy market. She is the sponge that absorbs another’s suffering in measures that most people do not. Ms.J lamented about the futility of such messages and remarked, “Look! American Greetings has already made Safyre into their poster girl for sympathy. The heights of capitalism! What use is a card anyway?”
It is true that for many, their engagement with Safyre will end with sending her a card and a gift. With that, some of the collective cringe at the misfortune of a child so young will be soothed. Perhaps not many will think of extending help people involved in research on prostheses and burns. Nonetheless, the impact of cards and other affirmations of love to Safyre and others like her cannot be stressed enough.
A friend of mine thought of writing a note complimenting Safyre on her grey-blue eyes and lovely blonde-brown hair as a way to take attention away from her burns. Those kinds of compliments are dicey because, in Safyre’s context, they seem to highlight the features of her body that still fall within conventional standards of beauty.
If you think comparing prejudice against skin colour with the stigma burn survivors have to suffer is a hyperbole, remember that the difference is in degrees and not form. The physical pain and discomfort of Safyre’s condition is a fact. The stigma attached to the way she looks because of her burns and the way she maneuvers her body because of her disability are social constructions that can be discarded if enough people willed. Airing one’s sympathy for Safyre’s skin condition has the flip-side of ingraining in her mind that she is not normal and that even though our heart goes out to her, she would never be accepted as a normal child, partner, love interest or colleague.
Acknowledging the physical ramifications of her burns and working to minimize it is not the same as sympathizing with her because ‘she will have a hard time being accepted by the world’. The latter is an apology from us to ourselves for our own unwillingness to discard our own norms of conventional beauty and ability. According to WHO statistics, in India alone, 10 lakh people suffer moderate to severe burns every year. It is more common that noticeable in one’s immediate surroundings. The story of acid attack survivor and rights activist Laxmi opens our eyes to the realities and potential of the life of a burns survivor. I would like to use Safyre’s example to highlight the confluence of disfigurement, disability and prejudice in society. Safyre’s case of disfigurement makes us forget that those with other forms of disabilities also face a similar situation.
It is estimated that around 10 million people worldwide live as amputees. This figure may not be accurate given that in countries where survival rates are low, amputation is paid little attention. Congenital defects, accidents, wars and conflicts, acid attacks, diabetes and gangrene, and landmines are not the only reasons people lose limbs.Witchdoctors called ‘mgangi’ in Tanzania amputate limbs of albino children as it is believed by many that potions made using albino body parts herald good luck. According to Daily Mail, using a network of agents to kidnap albino children, witchdoctors in
But, the scale of amputations is larger than we realise. Witchdoctors called ‘mgangi’ in Tanzania amputate limbs of albino children as it is believed by many that potions made using albino body parts herald good luck. According to the Daily Mail, using a network of agents to kidnap albino children, witchdoctors in Tanzania sell albino skin for £6,000, internal organs for £65,000, and a whole body for £130,000.
Artificial body parts or prostheses will help Safyre with her movement and coordination. Prostheses need to be typically replaced every 6- 12 months for children, and every 3-5 years for adults. If a child becomes limb deficient at the age of 10, they will need approximately 25 limbs throughout the course of their lifetime. However, if a person becomes limb deficient as an adult, they will typically go through about 15-20 limbs during their lifetime (Prosthetics Outreach Foundation, 2005).
Limbs made of wood and resin only last for 18 months in countries with a tropical climate. A person can use a set of different prostheses at any given stage of life, each for a different task and occasion. Continuous research has produced low cost prostheses that are light-weight and look realistic. The dexterity offered by them is increasing. Experts believe that future developments in prosthetics (like powered knees and ankle joints) can lead to Paralympians outperforming their able-bodied counterparts. Much needs to be done to make everyday spaces more accessible by the differently-abled.
Safyre is in the custody of a blood relative. Unfortunately, many survivors of similar accidents end up in orphanages. I once read a report that said that sponsors and donors of aid are more likely to make donations when their charity goes out to a sizeable number of beneficiaries as opposed to a single person. The logic at work here seems to be the desire to make the most number of people better off. While admirable in cases where the donation is intended towards basics of survival, education and research etc., this logic might fail to take into account the fact that a bigger donation on a single person might make them way better off than any of the individual beneficiaries of the second instance. While it does make sense to make the bare minimum accessible to a large number instead of concentrating resources on a single deprived person, we must make sure that this logic should not influence modes of thought where ‘giving’ is used in a wider sense; for example, in cases like Safyre’s, making donations to her process of recovery should not bind us into thinking that economic contribution is the sole way to support, and prevent us from figuring out ways to sustain her psychologically.
I have often heard teenagers who have lived all their lives in orphanages say that they are grateful for the charity that makes their sustenance possible. Staffers of many orphanages are known to discipline orphans by telling them that they should be better behaved than the average child because they owe their sustenance to charity. Each one of us who is involved in making monetary contributions to orphanages must keep in mind that spending time with the children, being family figures to them goes a long way in their integration into society at a later age. Human interaction with the outside world is the only way to bring them up rightly feeling like the rightful guilt-free humans that they should be. Schools of psychology hold that if a person’s fundamental need to be nurtured and accepted during childhood is left unmet, they can have trouble forming healthy relationships in adulthood, may develop codependency and have trouble detaching from unhealthy relationships.
Science and innovation will make life easier for children with disabilities. However, we must bear in mind that psychological rehabilitation is possible only by treating them as one would treat any other child while keeping in mind their special needs. Overarching sympathy, repeated references to how the lack of disabled-friendly spaces at school, work, marketplaces etc., will restrict opportunities for them, etc., should be avoided as such ‘practical’ reasoning will have the effect of caging their minds in a box of limitations. The example of Akshansh Gupta, a person with 95% disabilities who was recently awarded a PhD from JNU, should make every ‘normal’ person realize the potential of the differently-abled.
This is what my friend Ms.E wrote to Sayre, “Dearest Safyre, it must be a huge Christmas tree that you have got there and I’m glad that I could contribute in the decoration with this card. I already feel great by just writing. Do tell your aunt to upload pictures of the tree when you are done decorating it. And I hope and pray that this Christmas brings you the best joys and love. Keep smiling sweetheart. Love and prayers.” She got it right. Safyre is like any other 8-year old. In tone and intent, we must treat her like we would treat any other 8-year old. Those who do not want to go through greeting card companies to contact Safyre can directly reach her at this address: Safyre, P.O. Box 6126, Schenectady, NY 12306
Let us be empathetic while being thoughtful and resourceful.