Coming to terms with and taking ownership of the ‘D’ word

Coming to terms with and taking ownership of the ‘D’ word

- Graham Copeland

Looking at dictionary definitions of the word ‘dwarf’, they seem to be well behind the times. They are insulting to people of short stature and reflect a background in folklore rather than paralympic medal winners. This burden from the past leads many people to be unable to use the word comfortably to describe their condition or that of a friend or family member. However, the recent high profile athletes and award winning actors who do use the word and the change in attitude of young adults with achondroplasia such as our son, demonstrate that it is now a positive statement of ‘who you are’ to describe yourself as a dwarf. Positive use of the word is changing the accepted definition. The people who need it are now taking ownership of the word.

Our experience started 22 years ago with the birth of our son. After a difficult birth and an indication from the medics that his legs were not in proportion, I entered a few days of denial. A full body x-ray finally confirmed the diagnosis of skeletal dysplasia due to achondroplasia. It was explained that he would not grow to average height and the word ‘dwarf’ was used by medical staff. We then banished the word from our thinking about him. Our concern over the coming couple of years was whether or not he would be able to walk, such was the degree of hypotonia (floppiness due to poor muscle tone).

By good chance our health visitor, who knew our family well after the birth of our two daughters, told us about the Restricted Growth Association (RGA). I phoned Dr William Shakespeare, who was a surgeon who had the same condition, and he was a wonderful reassurance for us, indicating that a positive future was very likely. This was helped further by our attending an RGA convention when he was one year old.

Also by chance, we met another family about this time who had a child with achondroplasia. She was older than our son was and was walking well even though she too had hypotonia when younger. Without these two contacts, we would have continued to struggle on alone.

He developed physically in the way that most children with achondroplasia do and we brought him up to be as confident as possible, such that he was very happy at mainstream primary school (where some adaptations were made for seating and access). During this time we carried on without much contact with other people with restricted growth and never used the‘d’ word. Indeed I didn’t like to hear the word spoken even when dwarf conifers, for example, were mentioned in gardening programmes! 

This started to change for all of us when we went to our next RGA convention and soon afterwards to our first dwarf sports events organised by, as it was then, the Dwarf Athletics Association UK (now the Dwarf Sports Association UK). We waited to get involved with these groups until he started to ask questions about why he was smaller than other kids were. This was what felt right for us, other families attended from a much younger age. These events were a huge boost too his confidence and to our understanding of how people with a range of restricted growth conditions get on with their lives. We also started to use the word dwarf in a positive way. Our son also started to think of himself as a dwarf and to develop a positive self-image using that label.

This process continued through his teenage years. Now at Glasgow University he readily uses the word to describe himself and what he is. He has taken ownership of the word and is dispelling its outdated meanings. I think he is brave to do so. He is developing a strong confidence about his degree course and future career but at the same time doesn’t like walking around Glasgow in school holidays. In contrast, when visiting London for work experience or New York to see his uncle and aunt he is quite comfortable walking around the city. Such are the levels of ignorance and rudeness still out there in some places. Let us hope that positive role models for dwarfs such as Peter Dinklage and Ellie Simmonds, the good work of support groups such as Short Stature Scotland and the courage of the young adults to know who they are, will make it cool to call yourself a dwarf.