Through My Eyes
The following article is a unique insight into a what is is like to be affected by MOPD.
Through My Eyes
Try and remember what it was like to be 7 years old…. Now for a twist, imagine you are even smaller than the height you are when kneeling on your knees. Objects of interest are usually out of your grasp. Objects of necessity (door handles, light switches, wash basins) are out of reach. You make eye contact with the knees of adults, their faces are not easily viewed and you are forever looking up at them towering over you. Sometimes people don’t notice you. You get bustled out of the way stepped on or even sat on. As a parent of a child with dwarfism indicates “you are alone in a world of giants”.
Paradoxically, you go from not being noticed to being instantly recognised everywhere you go, whether it is in the school yard, walking down the street or entering the shops. People feel the need to touch you, ruffle your hair or call out to you like you are their long lost friend. This is baffling as you have never met them before and even if you have you don’t remember them. As Kiruna Stamell (short stature person) puts it “I've had this discussion. It's like, it's like being famous but without the perks.”1
There is an element of mystique around how you do things. People assume you are younger than you actually are. You remember at pre-school being told to be the baby and getting pushed around in a toy pram. Kids still continue to talk to you like a baby with some “cootchy cootchy coos” and “Oh isn’t he cute”. Strangers are alarmed when mum waits for you outside while you go to the public toilets on your own. Adults pick you up and plonk you in places you don’t want to be because it is easier for them. People at times wrap you up in cotton wool, scared you might get hurt by others, emotionally or physically. Dwarf rapper Bushwick Bill has his own take on it: "People tried to protect me; I didn't give a * * * * about that....I wanted to be part of the great big world we live in.”2
You continue to grow on the inside but the outside doesn’t keep up. The older you get the more obvious the discrepancy is to others but things really haven’t changed - you are just you. As Margherita Coppolino (short stature person) indicates “The age of eight was really the time that I significantly remember children in the orphanage saying to me: ‘You'll never grow up, Marg,’ and I kept denying it.” 3
Even though you are 7 you continue to wear nappies. You don’t always feel hungry and you are made to drink smelly milk. Everything you do requires strength and effort. You have the attention span of an ant and you are always on the go. Regardless of how you might want to be, this is how you are. You enjoy being with people and love to socialise, you are the life of the party. As Katerine Sidin (short stature person) states “In Australian society, I feel I have to be twice as out going - twice the person - to be accepted along with everyone else and be taken seriously.”4
Consider all these things and then on top of it throw in an intellectual disability that puts you at the level of a 3-5 year old….. Imagine how you would respond to the world and how you would respond to the people in this world……
By Beth Matters, July 2008
References
1“Show and Tell: Kiruna Stamell & Emma J Cooper” www.abc.net.au/tv/enoughrope/transcripts
2 “No bigger than a Minute” – film by Steven Delano
3 “How it feels…to be a person of short stature” www.theage.com.au
4 “It’s a small world” www.disability.qld.gov.au/news-events
About the Author
The above article was written by Beth Matters, a mother of two small children, a psychologist and a behaviour specialist employed by New South Wales, Department of Ageing Disability and Homecare (DADHC) in Australia. DADHC provide support and services to more than one million older people, people with a disability, their families and carers.
It came about whilst working I working with the Lagana family and their youngest son Leo, who has Majewski Osteodysplastic Primordial Dwarfism Type II (MOPD II). She had been assisting Leo's transition back to primary school and a period of instability. Beth wrote “Through My Eyes” particularly for the teachers at Leo’s school so that they might gain a perspective of what life might be like if they too were small. Often people focus on surface or reactive behaviours and become largely “unconscious” to what lies beneath the behaviour. We have so much to learn by looking at the wholeness of our children in each moment with non-judgemental awareness.
WWGF Comments
"Through My Eyes" is a heartfelt piece that takes you on journey of discovery and an insight of primordial dwarfism and dwarfism as a whole.
Ask any parent what they think of it, it explores and touches upon the emotions and thoughts of what their child may be feeling and thinking on a day to day basis, or during some part of their lives!
There are children as young as five already asking their parents why am I small mummy?, why do people stare daddy? Parents try to answer in the best way possible but at this age how to explain?
One of aims is to get children affected by MOPDII and the other sub-types of Primordial Dwarfism together as often as funds allow us. Not for one day, two days or three. We try to give them a week together where they can explore their surroundings, have fun with similar children and families; and over time become educated in the condition that effects them.
The benefits of these meetings allows the children with time to become empowered to overcome everyday hurdles, to stand shoulder to shoulder with their peers and reach their full potential.
The meetings are also relevant for the parents, brothers, sisters, grandparents and other members of their families. It allows them to confront and talk about their fears, not over the phone, or via text and emails but in person. There are many tears shed during the meetings but there are mores hugs and words of support!
It may takes us many years to achieve our aims for the individuals and families affected by the sub-types of Primordial Dwarfism but during these meetings individuals and families become empowered to deal with the day to day concerns, fears, hurdles, barriers and negativity for a short space of time.
These issues will never go away, but with the right support they will become bearable and somewhat acceptable; and allow individuals and families to enjoy life as normal as possible.