LEGO has been a passion of mine for as long as I can remember. I was so obsessed as a child that I would play under my bed into the early hours of the morning and was always introducing my parents to a new spaceship, futuristic car or other contraption I dreamed up.
The fact I was born with one arm didn’t make a difference. I was always very independent and had an innate instinct to use what I was given and make the best of it.
I have great tactile sensation in the stump of my right hand (it is in fact a ‘hand’ as fingerprints and knuckles are present) so I used it a lot. When I was young, using a prosthesis would have been more of hindrance.
It wasn’t until I was nine years old that I first thought about making my own arm.
I managed to create something basic with wire with which I could open and close a pair of tweezers. This was a hugely satisfying moment and that feeling never left me. It just sparked my interest to experiment further.
I was attempting to build a LEGO ship when I looked at my arm and had a moment of inspiration. ‘Could I build the seemingly impossible?’ I asked myself. Suddenly, the bricks became so much more than a toy.
Building it took a lot of trial and error, as well as very deep knowledge of the potential of LEGO elements. I had to build a lot, over and over again, following the instructions and then adapting a design to my own needs.
It was like going through an apprenticeship. I’d spend long sessions assembling and disassembling repeatedly to understand what was possible, gaining the knowledge I needed as I went.
My prosthesis has evolved over time. Each version worked with the same principles as a regular arm: they have a bend at the ’elbow’ and I control the mechanics to varying degrees with my stump, sometimes activating switches or pulling on levers.
Some of my arms have had the addition of fish wire or a guitar string, or used the battery and engine from LEGO Technic elements, and to date I have always used a single set of LEGO to manufacture each one.
The first arm came from a helicopter, the second a plane and both the third and fourth came from a crane. The attributes were determined by the set and that made each one special.
My current arm is the most similar to a human limb since it has five fingers. The fingers cannot move independently yet – this is the goal in future prostheses.
I have never had to use another prosthesis. I can pick up objects, open doors – I even ride an electric scooter to university with my adapted arm. I like it to stand out and get the limelight so when I’m at a conference or presenting, I make sure to only wear black or white so everyone can get a good look.
Access to good prosthesis has improved all around the world but while the technology is there, we are a way away from everyone being able to use it. Availability is greatly affected by economic and geographical factors.
Taking an old prosthesis and adapting it for a new person requires a good prosthetist or bioengineer (which is what I am studying at the moment). But the more technologically advanced the prosthesis is, the more expensive this becomes and they are not easy to standardise.
This means constant measurements, fittings and tests to get an efficient prosthesis suited to its wearer. If you are not from a wealthy country or have a disability that makes travelling difficult, this isn’t very accessible.
I can understand how difficult this must be for so many people – there were no prosthetics with advanced sensors or motors back when I was growing up.
I’ve been through many difficult experiences and bullying has been very present in my life – I’ve been pushed, spat on, insulted and more – but I’m fortunate that it’s always been counteracted by the support of my family, friends and teachers.
They have helped me overcome any obstacles and I always felt that what nature took from me, it gave back in a home with a lot of love, encouragement to explore my creativity and to push my boundaries.
I certainly don’t think difference is a bad thing and I do not identify with the word ‘disabled’.
There have always been social barriers for differently-abled people – there may always be – but it’s not like I would call the rest of the world ‘disabled’ for not having the same capability as me!
As far as I know I am the first and only person in the world who had made their own prosthesis with a LEGO set but everyone has different things they simply adjust or adapt to.
I hope that my experience will help to break some stigmas around disability but I don’t want short-lived change. I receive messages all the time from people around the world asking me to help them make a prosthesis, which makes me realise how lucky I am to have made this work.
It’s exciting and heart-warming but not being able to help them all makes me sad. I would love to help children in third world countries overcome trauma and show them how a ‘toy’ can become an arm.
We are in an exciting era of regeneration and entering one of more human and technological integration with bionic eyes, brain chips and so much more is on the way. The open source and (relative) low costs of 3D printing has opened a new field of development.
I hope that in the near future, many ailments and physical issues may be curable thanks to advances in science. My story is just the beginning.
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