THE SEEN AND UNSEEN BARRIERS EXPERIENCED BY PERSONS OF SHORT STATURE
The medical terminology for “short stature” is dwarfism, and research has found that persons with dwarfism [or as referred to more appropriately “persons of short stature”] frequently face extensive mental pressures and social stigmatisation. “Persons of short stature face a wide range of physical and attitudinal barriers, including very high levels of stigma and discrimination”, confirms Chairperson of Equal Citizens of Short Stature – Southern Africa [ECOSS-SA], Melanie Lubbe. “This has a very detrimental effect on our mental health”.
Equal Citizens of Short Stature – Southern Africa is an organisation which, for the first time in South Africa’s history, represents the views, rights and interests of persons of short stature as a group that is frequently discriminated against within society. The organisation works to provide a collective voice for persons of short stature to advocate for the removal of barriers that prevent them from claiming their rightful place within society as equal and capable citizens.
Melanie says:
We do not only face physical barriers, but attitudinal ones as well. Yes, persons of short stature cannot reach pay points, ATM’s or boom-gates. We cannot access public transport easily or see over the handlebars of shopping trollies and it is hugely frustrating, but can you imagine how it feels to be made fun of and stared at all the time? We are called derogatory names like “midgit”, “piekie” or the Tokoloshe”.
When it comes to barriers to employment, Melanie asks “Can you imagine applying for a job and the manager asking you if you considered applying at the circus?” Worst case scenario, according to Melanie, is when babies are born with dwarfism and killed in certain cultures.
For all these reasons, the organisation is dedicating each October to advocating for the rights and freedoms of persons of short stature, with the 25th of October being International Dwarfism Awareness Day.
HOW IS THE MENTAL HEALTH OF PERSONS OF SHORT STATURE AFFECTED?
Between October and November 2022, the SA Federation for Mental Health [SAFMH] took some time to learn about and reflect on the unique challenges faced by persons of short stature, while asking the pivotal question “how does this impact on the mental health of these individuals?”.
To help us understand all this a bit better from the perspective of persons with lived experience, we worked with Melanie and ECOSS-SA and completed a brief survey with 26 members of their organisation. Here’s what we learned:
- When asked whether their mental health had ever been affected due to being a person of short stature, seven respondents said a definite “yes”, ten said “maybe a little”, and nine said “not at all”
- Respondents who confirmed that their mental health had been affected in some ways were asked to elaborate on their experiences and explain what the effects had been on their mental health. One respondent stated that their self-esteem had been affected, while another shared that, despite having never been officially diagnosed with a mental health condition, they had experienced suicidal thoughts. Another stated that they had lost their sense of positivity because of feeling that they were not good enough for society, while a few individuals specifically mentioned experiencing feelings of anxiety and/or depression. One respondent paid specific reference to how their anxieties had affected them negatively during adolescence but noted that they had fortunately overcome this. Another respondent reported having experienced struggles with self-acceptance as a young adult and later in life, after the loss of a child, severe depression. Another said that they were ashamed of themselves because of people looking at them and calling them names that they were uncomfortable with. One respondent reported having clinical depression and anxiety, accompanied by feelings of physical insecurity, along with the fear of not being able or allowed to reach their goals in life. Another reflected on when they had given birth to their children [who were also persons of short stature] and stated that they had been affected mentally at the time because of feeling stressed about what people would say. One respondent said that they felt unaccepted, abnormal, and that they did not feel like they were a proper member of society. They felt inadequate, which made them self-diagnose themselves with depression. At the same time, they were also anxious when walking in crowds as people would stare and children would point and laugh at them. Another shared that in addition to being laughed at, they had also been bullied because of being a person of short stature, while one respondent stated that despite not having a medically diagnosed mental health condition, they experienced anxiety in public every day of their lives while needing to do their daily tasks. The person experienced humiliation, which took a mental toll on them: “I am not having it easy; I get rejected all the time when it comes to relationships, that on its own is a mental breakdown”. Lastly, one respondent noted that in addition to being diagnosed with depression they also struggled with insomnia occasionally. They had also survived a suicide attempt.
When reflecting on whether being a person of short stature had ever affected her own mental health, Melanie shares the following:
Yes it has affected me, and I would say on different levels, at various ages. My first realisation that I was “different” was during my teenage years when other girls began to tower over me and developed where I remained childlike in appearance. I became very self-conscious and shy to the point of avoiding boys as much as possible. Dating and being rejected is damaging to one’s mental health for sure. I made significant progress in my early 20’s though as I became more mature. But life happens, and one of the most emotionally devastating experiences was when I lost my baby at birth. It is devastating to any woman, but I now felt more unworthy, not good enough and more useless than ever before. We were however blessed by adopting two beautiful children later and for the first time in my life I felt completely happy, content and equal. Having a disability does not safeguard you from hurt, and I too had to deal with divorce and the knowledge that my husband left me for another woman. I nearly didn’t survive this, but something deep inside my being dragged me onward and upward until today in my 50’s I can truly say that I am in the best space emotionally than what I have ever been. I discovered ME again; I realised that I am an amazing person, and I am most certainly EQUAL to everyone else”.
- When asked about what they thought the main causes of their mental health problems had been, one respondent stated that their mental health problems stemmed from being stared at, while also needing to ask for help every time they needed to, for example, reach something on a high shelf. A few respondents stated that rejection and being unaccepted by society was the root cause of their mental health problems, while others cited a lack of independence, the negative ways in which communities looked at and treated them [and in some cases their children] and being laughed at by society and seen as “something strange” as the main reasons. One respondent noted that they didn’t feel “normal” like everyone else, while another stated that they didn’t get enough support from their immediate family and friends. Direct and more subtle forms of discrimination affected one respondent, along with a strong feeling of inferiority, which was directly linked to their height and their appearance, despite being of normal intelligence. Some respondents internalised their struggles and grappled with questions such as “why me?”, while others noted that a lack of self-confidence and placing themselves under unnecessary pressure had contributed to their mental health problems. One respondent attributed their mental health problems to being bullied at a young age, while another cited physical health reasons, such as severe and persistent pain, accompanied by several orthopaedic surgeries, as contributing factors. Lastly, one respondent stated that very high levels of stress, resulting from various challenges in life, had affected their mental health. This included being a single mother, while also needing to take care of her elderly mother and a daughter with a psychosocial disability, who also had a young child of her own. The person stated “Being a person with a disability does not exempt you from normal life situations, it adds to the demands”.
- When asked whether they had ever been victims of abuse due to being a person of short stature, eight persons replied “yes” and 18 “no”. However, when asked what types of abuse they had experienced, it seemed that more people had in fact experienced abuse than what was indicated initially. 16 respondents listed verbal abuse [including name calling and hate speech], while three noted physical abuse [including bullying at school, within the community or experiences of gender-based violence]. Seven respondents listed “other” types of bullying, including emotional abuse within their marriage.
Melanie says that verbal and emotional abuse are commonly experienced by persons of short stature, and she herself also experienced it throughout her life. She says:
When it is dished out by family or within a marriage, it is even more devastating of course”.
Furthermore, Melanie tells us that persons of short stature are sometimes also the targets of sexual fetishes, being regarded as a ‘tick box” when it comes to certain people’s lists of sexual achievements or conquests. “This is extremely distressing” says Melanie. “The idea that people can objectify a person like me in such a way is just horrendous”.
- Lastly, respondents were asked how they thought society could contribute towards ensuring better mental health for persons of short stature. Responses included that society should learn to act normally around persons of short stature and see them as normal human beings, along with treating them the same as other people and not treating persons with disabilities as “semi-humans”. People should also avoid staring as if persons of short stature were beings that do not or should not exist, and should instead accept them for who they are by treating them equally like everyone else. Society should also develop higher levels of respect towards and knowledge about persons of short stature, including familiarising themselves with the different types of dwarfism. This learning should also involve people teaching their children about how to approach and treat persons of short stature, along with sharing information about this particular disability with other people so that knowledge about persons of short stature may be increased and disseminated more widely.
- Another issue raised was that society should be educated about the fact that persons of short stature have a physical disability and not an intellectual one. More effort should also be made to make persons of short stature feel more comfortable by being more considerate towards practical challenges pertaining to their height and restrictions they may experience in this regard. Acceptance was also an important point raised by respondents – this included persons of short stature being accepted in mainstream life without being treated differently or treated as “special cases” that cannot be integrated into society, along with the recognition that persons of short stature are also human beings who deserve to be treated with respect and a sense of equality. Persons of short stature were also encouraged not to hide their own children, who might also be persons of short stature. Awareness should also be raised about the barriers persons of short stature face, the things they struggle with and how society can assist these individuals to overcome these challenges. Communities should also make more concerted efforts to invite persons of short stature to schools, churches and community meetings to listen to their life stories and learn about their lived experiences. Support for such awareness initiatives – and other awareness programmes about persons of short stature – should specifically also be prioritised by government, along with the provision of better healthcare to these individuals. Efforts should ultimately be made to increase accessibility for persons of short stature in all aspects of community life.
In terms of societal changes Melanie says:
Creating a caring and compassionate society, will benefit everyone, not only persons with disabilities, but the elderly as well”. She continues by saying: “Earning a decent living is another human right that is often infringed on when it comes to persons or short stature. Employers only see the small stature and immediately measures the persons capability against it. We need to provide for our families just like every other citizen. Also, adding to unemployment there is a practice to use persons of short stature as ‘party favours’. There are agencies in South Africa that hire persons of short stature, have them wear silly costumes and let them ‘meet and greet’ and entertain people at functions. It is difficult to believe that it is still happening today, but sadly it is. Unfortunately, it is somewhat accepted in the community of short statured persons because at least they get some income from it”.
Melanie also tells us about a so-called “Dwarf Festival”, which is arranged by a group of people every few years in South Africa:
This is a totally unacceptable and offensive practice. During this event, the public are encouraged to take photos with persons of short stature, and at one of these events persons of short stature were loaded onto tractors and floats and paraded through the town. The worst is that they get away with this money-making scheme under the banner of ‘awareness raising!’. This is exactly what we are trying to eradicate from society”.
Ultimately, persons of short stature should be treated with respect and with a sense of equality, and where needed provided with the necessary support measures to enable them to contribute equally to all other members of society.
We aren’t mythical creatures; we are mothers, fathers, and can do any job. Yes, we may a need step stool or a few adjustments but ultimately, we need an equal opportunity, we want to be respected, nothing more, nothing less.” – Melanie.
SHORT IN STATURE DOES NOT MEAN SHORT IN SELF-BELIEF
Despite the multitude of physical and attitudinal barriers faced by persons of short stature, along with the challenges to their mental health because of issues such as stigma, discrimination and marginalisation, these individuals are in fact a highly resilient and self-confident group. When asked to reflect on how they saw themselves, 18 of the 26 respondents stated that they were strong people who were equal to all other people, while five noted that they do well when supported by their friends and families. Only three respondents stated that they were unable to cope with the challenges of life.
Melanie says:
People can be very mean, I too get the stares, remarks and outright discrimination, but I have learned to take it in my stride and to use it as teaching and awareness raising opportunities. It has not been easy and there were many setbacks, but if I can help other short statured people to realise that, I would have accomplished much”.
Despite the fact that the majority of the people whose views are represented in this piece [including Melanie’s] show high levels of self-confidence and a strong determination to be treated equally, there is still much work to be done at all levels of society to ensure that the human rights and dignity of persons of short stature can be fully protected and realised in all settings, ranging from the community, to the family environment, to the workplace and/or educational institutions, and to also ensure that the mental health of these individuals may be safeguarded more effectively. “Good mental health for persons of short stature is of extreme importance” concludes Melanie. “It is the foundation of well-being and to ensure a resilient, self-confident and adaptable person”.
SAFMH would like to thank Melanie and the members of ECOSS-SA sincerely for the opportunity to have collaborated on this piece, and we wish them all the best with their very important work. SAFMH will continue to work with Melanie and ECOSS-SA to help raise awareness of the mental health needs of persons of short stature, along with supporting other events and initiatives ECOSS-SA run in the future.
We trust that readers will find this piece as informative and inspiring as it has been for us here at SAFMH, making us acknowledge yet again that there is always more work to be done to support specific groups with their unique mental health and human rights challenges.
By Melanie Lubbe – Equal Citizens of Short Stature – Southern Africa & Leon de Beer – SA Federation for Mental Health
For enquiries:
Melanie Lubbe – info.ecoss.sa@gmail.com
Leon de Beer – leon@safmh.org