Ending Bullying, Discrimination against Persons with Cleft, and Need for ‘Smile Therapy’

In this report, Sunday Ehigiator writes about the need for all stakeholders to come together against bullying and discrimination of persons born with cleft, just as he stressed the need for Smile Train, an international children’s charity that sponsors 100 per cent free cleft repair surgery and comprehensive cleft care for children globally, to include therapeutic sessions, tagged ‘Smile Therapy’ in its comprehensive cleft care, I order to help persons with cleft deal better with bullying and discrimination

Bullying is a repetitive and deliberate negative behaviour towards an individual who is incapable of defending him/herself. It is a fairly common condition in school children, with a global prevalence of five per cent to 58 per cent. Bullying can occur relationally, verbally or physically.

Being bullied has many lifelong negative effects on an individual’s emotional state. Those who are bullied may experience negative physical, mental, social and spiritual effects.

It has been observed that the rates of absenteeism and dropping out of school increase as bullied students are often afraid of school. Speaking with THISDAY, a parent (name undisclosed), revealed that she has had to change school for her son born with cleft for the third time in two years, due to several aggravated incidents of bullying.

Victims often feel anxious, insecure and lonely, and often have a negative self-evaluation and low self-esteem. It has been observed that those who are bullied have a high risk of experiencing severe mental health problems. It has also been found that suicidal thoughts and self-harming behaviours increase in victims who are constantly bullied.

Understanding CLP

Speaking with THISDAY, a Medical Expert and the First Oral, Maxillofacial Surgeon in Nigeria, Prof. Olugbemiga Ogunlewe, explained that Cleft Lip Palate (CLP) is a birth defect characterised by a split either in the lip or a hole in the palate.

She said: “When a baby is born, the baby just comes out with the discontinuity of the upper lip or a big hole in the roof of the mouth.

“Cleft anomaly is not a life-threatening anomaly. It is not something that will kill the baby. It is not evil. It is treatable, and the child can also live a normal life.”

She noted that the causes of CLP are not yet fully understood, and research is still ongoing. However, she said “it is believed that it is caused by the interplay between what we acquired from outside and then the genetics, what is internal.

“And because we don’t understand the causes we talk about risk factors that are those things that predispose an individual to having cleft. Most often it has to do with what the pregnant mother eats or was exposed to during pregnancy.

“If she is exposed to some radiation, takes some drugs that have not been fully studied or takes some concussion that she doesn’t know what it contains, or if she is sick during pregnancy etc. These are predisposing factors.

“That is why we advise that a pregnant mother should be cautious of what she takes in and the environment she goes to during pregnancy,” she said.

Bullying of Persons with Cleft

Dentofacial anomalies can lead to an increase in bullying among children and adolescents. The exposure of individuals to teasing because of their teeth and facial features has been a subject of interest in the orthodontic literature.

It has been determined that there is a significant relationship between bullying, malocclusion and self-esteem in adolescents.

Cleft lip and/or palate (CLP) are congenital malformations that can affect the head, lips and intraoral structures. Although it varies depending on genetic and environmental factors, the incidence of CLP is very common with 1 in 700.

Children with CLP have some functional and aesthetic problems such as difficulty in closing the mouth, feeding difficulties at birth, hearing problems, speech difficulties and dental problems. As a result of such difficulties, individuals with CLP are at increased risk of being bullied.

Victims of Bullying

Below are the experiences of Shadrach and Kaosarat as shared with THISDAY; Shadrach and Kaosarat were born with Cleft Lip and Palate (CLP) and suffered from bullying and discrimination from a very tender age, and still get discriminated against at adulthood.

‘Onimu asin’ (mouse nose), and ‘Aranmu’ (someone who speaks through the nose) were some of the adjectives used to describe 37 years old Shadrach Aruoture, throughout the later part of his primary school, and all through his secondary school.

“I also remember when one of my teachers asked the whole class to sing a body-shaming Yoruba song for me. The Yoruba song was ‘Asin bumi ni mu je’ (meaning, mice have bitten off my nose), due to the way I talk. I cried my eyes out. I couldn’t beat my teacher, but if I had my way, I would have beaten him up.

“This was a very terrible experience. Not knowing who to turn or report to. As small as I was then, I knew I was in trouble. I was bullied to the extent that my academic performance became very poor.

“I could also remember vividly that there was this particular guy when I was in secondary school who always threatened and liked to beat me up at any point he set his eyes on me. He was asked why he always does that. He said he doesn’t like me because of the way I talk.

“Bullying is one major evil we experience as a cleft patient. It’s so bad to the point that I became calculative when associating with people. I chose where to be and who to be with, most especially at school. This resulted in always wanting to be alone, and at a time had a huge effect on my self-confidence.

“Even now as an adult, I owe Smile Train all the thanks for helping me correct my cleft lip and palate problem, which has boosted my confidence in no small measure, however, the bullying and discrimination aren’t automatically ending anytime soon.

“Let’s talk about getting married. This is another big problem for cleft patients. Thank God for the woman (Mrs Mabel) God gave me at last. Before her, I have had scenarios where ladies would say stuff like, ‘I am not a man they can be with because they can’t withstand the shame of being called Iyawo Asin (Mice Wife), or look down on them because of how I speak.

“There is another scenario where my proposed in-laws said I was not presentable or fit to be called his in-law. Isn’t this emotionally traumatic? It is really sad because people tend to make it look as though being a cleft patient is self-inflicted.

“It isn’t, I didn’t choose to become a cleft patient, I was born like this, and I shouldn’t be discriminated against for being different.” Shadrach sobs.

Shadrach said with the overwhelming bullying and discrimination, at some point in his life, he saw his condition as a curse and the thought of ending it all became a constant in his mind, but for ‘Smile Train’ who came to the rescue by sponsoring him to undergo corrective surgery for his palate in 2017.

For 25-year-old Kaosarat Bankole, who is now a Dental Technician at the Lagos Island General Hospital, she never encountered a bully till she was in senior secondary school.

According to her, “Cleft gave me a different meaning to life till I met Smile Train. I couldn’t talk or express myself around people apart from people close to me like my sister, and a few family members. It made me a loner, stigmatised, emotionally drained, and mentally unstable, and it made me feel worthless at times.

“During my stay in junior secondary school, I had no cause to worry about bullying and mimicking because I was mostly on my own and I only talked to people who were closer to me. At some point, my teacher started getting to know me through my academic performance.

“However, the story changed upon getting admission into the senior secondary school. The bullies from my so-called seniors were unbearable. It started affecting me academically but then I just tried to struggle and do what I could do.

“There was this particular day I can never forget. A senior of mine sent one of my colleagues to call me, and being a junior student, I was scared and started wondering about what I did to have warranted being called.

“So I went to see him. Upon getting there, they intentionally asked me to pronounce a word, and I did, and then they started laughing at me so hard that they were rolling on the floor.

“I felt so angry, and I just walked away and went into my classroom to cry but then I could hear one of my classmates shouting at them and insulting them back. Since then, I fell back to my shell, became very quiet and just pulled back myself and it affected me academically because I couldn’t talk about it to anyone nor stop thinking about it.

“It wasn’t really easy, and it went on to affect me in my higher institution. In higher institutions, I don’t talk in class; I don’t publicly answer any questions despite knowing the answers to them. Because of what happened to me in my senior secondary school, I just had to neither put myself in a situation where no one would mimic or bully me.

“But after my surgery which was sponsored by Smile Train, I became more confident in myself to the point that I don’t care if you mimic me, but I can never be bullied anymore.”

Encounter with Smile Train

Speaking on how he came in contact with Smile Train, Shadrach said: “I went for ministration with my crew at one musical concert around Ojuelegba. While I was singing, a lady heard me and came requesting to see me after the event. We met and she told me she could be of help with my speech getting better. That she would recommend me to a doctor and that the surgery was free.

“The lady connected me with one Nurse Adesewa who in turn introduced me to the maxillofacial department and I was briefed about Smile Train, to be the sponsor of the surgery. To God be the glory, the surgery which would normally have cost me millions of naira was done for me free of charge.

“I was also enrolled in speech classes to help me improve my speech, free of charge by the organisation.

“Today, there is a lot of difference between where I was before, and where I am now in terms of my speech. It has drastically improved. Also, I am no longer hostile to people; I have learnt to love myself better and this has improved my self-esteem a lot, and being around kids also helped me in a lot of ways to be in control of my emotions regardless of what is said against me.”

Asked if he ever went through a therapy session to address his bullying and discrimination experiences, he said, “No, but I would have loved to, even now as we speak, there is rarely anyone you can talk to about being bullied or discriminated against as a person with cleft.

“I think Smile Train can also be a pioneer of that because they already have the facilities and are better experienced in any issue regarding persons living with cleft. I think therapy sessions should be inculcated among the ‘Comprehensive Cleft Care’ which they provide.”

On her encounter with Smile Train, she said she was first informed about the organisation through a close family associate simply identified as Mrs. Balogun, who had also heard from her uncles who once worked at the Lagos State University Teaching Hospital (LUTH).

She said, “I am happy to also be identified with an organisation from which I have immensely benefited. From my surgery and now speech therapy, I have not paid a single naira to receive this treatment.

“Since my Surgery in 2019, there have been a lot of changes within me and the way people see me. My speech is better; my confidence has immensely improved, including my self-worth. Smile Train is a lifesaver and destiny changer for children with cleft.

“The speech therapy sessions have helped me in a very positive way. But I also wish they could have therapy sessions to help us recover from the bullying and discrimination we encounter in our day-to-day interactions with the rest of the world. This would go a long way to build our confidence, and retain our self-dignity.”

Importance of Therapy for Persons with Cleft

Speaking with THISDAY on the impact of bullying and discrimination on persons with cleft and the importance of persons with cleft undergoing therapy, Registered Dental-Oral Health Nurse (RDOHN) and Cleft Speech Therapist, Babatunde Abosede Adejoke, said, “Bullying can affect everyone; those who are bullied, those who bully and of course those who witness bullying.

“Children who have cleft lip and palate tend to experience negative outcomes, which include impacts on physical, social, emotional, academic and mental health issues.

“From mockery to teasing, name callings, rude words, mimicking, self-stigma (shame about speaking up), bodily imperfections, negative appraisals of cleft-related differences and being perceived as ill and imperfect.

“They also suffer from limited social interactions, sadness, loneliness, and social exclusion, changes in sleep patterns, missed classes or dropping out of school, or decreased interest in academics, depression, anxiety disorder or interest in activities they used to enjoy.

“Smile Train has been doing a lot in terms of free surgery, and comprehensive cleft care for cleft patients, which also includes speech therapy aimed at helping them regain their speech and make correct pronunciation.

“However, in the area of bullying and other traumas they go through, there is still a lot to be done in that space, and this can easily be accommodated under the Smile Train comprehensive cleft care, especially after surgery.

“Similarly, persons with cleft also need to learn how to keep their emotions in check and not overreact to the situation when feeling discriminated against. They should learn to respond to false statements about cleft lip and palate. Many people have wrong and damaging ideas on the subject. Accurate facts and information may help change both ideas and actions.

“They should learn to share their experience; your story can be conveyed and can be of help to others that also have a cleft, especially as regards getting help from Smile Train, and you don’t have to be embarrassed about it.

“Children with a cleft should be encouraged to report incidents of bullying to their parents, teachers and other authority figures. Schools should encourage children to focus on their strengths and give genuine compliments to each other.

“Also, the society should help people with cleft disorder reintegrate by embracing them and treating them with love, care, respect and support.”

Need for ‘Smile Therapy’

As the largest cleft charity in the world, Smile Train has done a lot in the area of cleft treatments and comprehensive cleft care of persons with cleft in Nigeria. The testimony abounds of how persons, including children born with cleft, have gotten a new lease of life through their encounter with Smile Train.

With the organisation’s partnership with several teaching hospitals in Nigeria, which have immensely benefited the hospitals in terms of infrastructure and contribution to humanity, which should be the primary drive of humanity, Smile Train sure holds a good place in the history of every life they have touched and others associated with them.

However, considering the negative effect bullying and discrimination can have on persons with cleft irrespective of undergoing corrective surgery or not, the trauma, feeling of low self-worth and even suicidal thoughts that persons with cleft may experience from bullying and discrimination, it is therefore suggested that Smile Train can set up a form of therapy session, directed at peculiarly addressing the traumatic experiences suffered by persons with cleft, and also their close relatives, especially parents.

Of the truth, in Africa, particularly, Nigeria, not only persons with cleft get discriminated against. Their parents, relatives, siblings and any close associates equally have to bear the burden of discrimination and shame, which may equally cause them traumatic experiences.

This therefore would highlight the importance of ‘Smile Therapy’ whose main focus would be to always ensure to be a confidant and listening ear to every person born with cleft, thereby putting a smile on their faces.

Second, to corrective surgery and other care provided by Smile Train, persons born with cleft and their close relatives just want listening ears that understand their pains, especially when going through discrimination or when being bullied.

The ‘Smile Therapy’ platform can be that platform where they find expression to face any challenge thrown at them by society.

‘Smile Therapy’ can easily be included among the Smile Train Comprehensive care, and could just be a ‘WhatsApp’ accessible platform where persons with cleft can have access to discuss and speak with a trained professional, whenever they are bullied or discriminated against.

Furthermore, it is also important to carry out bullying prevention programs to break this negative cycle that causes emotional stress and negative feelings that may continue throughout the lives of any bullied victims, including those with a cleft.

Quote

Bullying is one major evil we experience as a cleft patient. It’s so bad to the point that I became calculative when associating with people. I chose where to be and who to be with, most especially at school. This resulted in always wanting to be alone, and at a time had a huge effect on my self-confidence