Being born with a rare ‘visible difference/disability’ can be an extremely interesting experience.
I was born with a limb malformation defect condition on my right-hand called Syndactyly (pronounced ‘sin-DAK-til-ee’) (Fusion of Fingers). Syndactyly normally occurs in animals and is an extremely unusual condition in humans
All four of my fingers were fused together and I have since had the index finger separated (after many skin graft and plastic surgery operations). Skin is taken from both the groin area and also the upper arm area to use for the skin graft and plastic surgery. I then had to wear a skin tight (and very itchy) custom-made silicone glove day and night for six months in order to compress and healing the scarring. I have more flexibility and grip with the index finger being released. The other three fingers share the same bone, so if more separations were to take place — one finger would be use-able (like my index finger) and the other two fingers would be floppy/limp/use-less.
My personal experience of having Syndactyly has been generally really positive and my family (from a very early age) taught, encouraged and helped me to be comfortable in my own skin and to have positive body confidence. I guess nobody is one hundred percent perfect. I have never ever tried to hide my fingers and/or hand, as this would only cause unneccessary attention. Some people never even notice and I am always more happy to explain this unique condition and answer any questions. Like with a lot of situations in life, it is often a case of accessing the situation and going with the flow. Natural and organic progression is great, as I do not want to force anyone in to learning about my condition.
If someone starts staring or glaring, then I will very politely just ask them, “Have we met before?”. I (like all other human beings) learn coping strategies and mechanisms. The majority of reactions I get when asked about my fingers are respectful, positive and encouraging. For as many years as I can remember, I have worn plain silver jewellery on both hands (watch, rings and bracelets) — now is this perhaps a subconscious way of both distracting and deflecting people from noticing my fingers? Discuss.
My educational experience was slightly intense. This was because I was offered extra time for all my School, College and University examinations (as I cannot write very fast with being right-handed). I declined the kind offer each and every time, as I did not want to be different from my peers (and be the only person left alone in the examination room). Obtaining a BSc (Hons) degree in Business Information Technology (via Manchester Metropolitan University Business School) was a complete ‘dream come true’ for me (as I never ever thought I would pass any examinations with constantly running out of time and being so stressed with having to write non-stop for hours at a time (for each individual exam)) and I now run my own highly successful six and a half year old Event Management & Planning Business – Epitome Celebrations Limited (based in Chelsea, London).
Living with Syndactyly does not hurt me and I am not in any pain. From time to time, the skin graft gets a little itchy and so a bit of cream always works wonders. I do however have some difficulties anatomically with some hand movements, such as: gripping (as my right hand is slightly smaller than my left), clenching a fist (not that I need to punch anyone!), holding heavy or large objects, catching a ball (use your left hand then Stephen!) and learning BSL (British Sign Language). One of my personal goals (for as many years as I can remember) is to learn to play the piano. One day, I will book some piano lessons. I can drive. I can talk. I can write. I can sing. I can walk and I can type.
I am not prepared to to be a victim and will never ever feel sorry for myself (Syndactyly-wise….. as I love/adore being a little unique) and therefore, to immerse myself in a ‘why me’ cycle of both frustration and anger. For me, it is all about: being happy, enjoying life and having the mantra of
“INHALE POSITIVITY & EXHALE ANXIETY.”
Living with a ‘visible difference’ has afforded me with so many absolutely amazing opportunities and many valuable experiences (please see below), for which I will always be immensely grateful for. I have met many inspirational people (through my on-going Syndactyly work) who have had to overcome adversity (with having to adapt to having acquiring a ‘visible difference’ through various distressing and extremely unfortunate situations (e.g. house fires/car crashes/acid attacks etc). All these individuals are ‘true heroes’ (in my personal opinion).
I spend lots of my time making a small difference through:
- Advocating for changing perceptions and attitudes
- Looking at diversity in fashion
- Promoting full inclusion of people with disabilities
- Raising both the profile and awareness of ‘looking different’
- Embracing difference
- Challenging the status quo
- Disrupting the norm
- Highlighting positive body confidence
This has all lead to various activities:
Stephen’s previous work has included presentations to students at: The University of Oxford (courtesy of G. Fletcher), The University of Cambridge (courtesy of M. Williams), The Queen Mary University of London (courtesy of M. Maconochie) and also The University of Manchester (courtesy of E. Poliakoff).
He is the Vice-Chair of a Health Research (PPI: Patient and Public Involvement) group called PRIMER (Primary Care Research in Manchester Engagement Resource) at The University of Manchester (www.population-health.
His other collaborations have included:
Working with The Centre for Appearance Research (CAR) (at The University of the West of England, Bristol) for their ‘Perspectives’ Exhibition at Appearance Matters 5 Conference (www1.uwe.ac.uk/hls/research/
Presentations at several Changing Faces Charity training day courses (www.changingfaces.org.uk).
Attending both the ‘inaugural’ Body Confidence Awards (2012) (House of Commons via The All Party Parliamentary Group on Body Image) and also The Second Body Confidence Awards (2014) as a guest of Caroline Nokes MP (www.berealcampaign.co.uk/home
Stephen has written Syndactyly articles for: DNA Magazine (www.dnamagazine.com.au) (May/June 2015 edition – Number 182) and RAFT (Restoration of Appearance and Function Trust) Book: 25 Years Of Medical Discoveries (www.raft.ac.uk).
He has had Syndactyly abstract submissions accepted for both ‘The 10th World Symposium on Congenital Malformations of the Hand & Upper Limb 2015’ (www.worldcongenitalhand2015.
Stephen is currently writing a book – ‘Syndactyly: Fusion of Fingers’. This extremely exciting book launch will be taking place in the evening of Thursday 20th October 2016 at The Saatchi Gallery in Chelsea, London.