Pleased to meet you…. part 2.
part 1 is here: https://medium.com/@kevindonnellon/pleased-to-meet-you-let-me-tell-you-a-bit-about-myself-4748978a2819
In my first ever posting on here I quoted a section from this book by Dr. Martin Johnson [former Director of The Thalidomide Trust, UK] et al:
In his book Martin Johnson wrote: “One doctor recalled seeing the midwife, out of sight of the mother, push a four-limb damaged baby, who was in a small box and not breathing, underneath the delivery bed.
The doctor inadvertently kicked the box with his foot, and the baby started crying and survives to this day. The shame of being party to this stayed with that doctor until his dying days.
The baby in the box was Kevin Donnellon, who went on to achieve an education to postgraduate level, become a university lecturer, a campaigner against cruise missiles and a father.”
I should have added that I was totally unaware of this story until just before the book was published [early 2018] when Dr Johnson asked my permission to include it. I was shocked — my mother had never mentioned this dramatic episode. But that was hardly surprising as she was totally ‘out of it’ during my difficult birth as she was hemorrhaging and was therefore never aware of this. The doctor referred to by Johnson eventually became a professor and somewhat of an expert in Thalidomide. When he died Martin Johnson was given access to his diaries and archives to help him research his book. Martin doesn’t name him in that chapter in his book, so I won’t here.
I had as a working title [one of many] for my autobiography “Out of the box” but I thought it a bit naff, plus it was an event that I had only just heard about so it never impacted my life in any way. I did briefly think of what might have been had the doctor not inadvertently kicked the box. I might have been just another static in the many, many instances of thalidomiders dying at birth or just after. The true figure is unknown and deliberate infanticide of disabled babies wasn’t uncommon even in our wonderful NHS in those days [I’ll discuss this more thoroughly in another posting soon].
I gave myself a wry smile when Martin said that I became a “a campaigner against cruise missiles” — in truth I did go on two demos against them and I was arrested both times for symbolically cutting the fence of a US airbase, during the early 1980s when Thatcher allowed Ronald Reagan to site his cruise missiles in the UK at the height of the cold war. I used a small hacksaw blade [my friends teased me, saying it looked like a nail file] — one of these demos and my arrest can be viewed in the ‘Videos’ section of my blog site www.kevindonnellon.com ‘World In Action’ part 3 ‘Born survivors’ at 00:15:15 if you can’t be bothered watching the whole programme.
But enough of my politics — this will be covered in a whole chapter of my autobiog. when it's eventually published. IF I ever finish it. Incidentally if you want to help me speed this up and help me towards hiring an editor [one is sorely needed!] then any contribution to my PayPal link will be greatly appreciated.
Without further ado here’s another part of my unpublished autobiography ‘Looking Up’ [constructive criticism and comments are always welcome] …..
Chapter II. Normalisation…?
I truly had a blissfully happy childhood. Despite Mother’s pessimism for my future and her intense guilt for taking that drug [I never ever blamed her — it wasn’t her fault] I was truly loved.
In fact, compared to my siblings, I was spoilt rotten! I was the focus of attention — by my parents, by the media and by various medical and social work professionals. The spotlight was constantly on me. My younger sister Liz of course wasn’t neglected but she spent a great deal of time in my Aunt Mary’s [Mother’s oldest surviving sister] house, whilst Mother took me to hospital appointments or went to legal meetings in Barristers chambers in London. My sister Joan, who is 6 years my senior, would be pulled out of school to accompany Mother and me if I had appointments in the local hospital for the artificial legs fitting etcetera. Joan’s school never dared to protest or argue with Mother. Joan is still bitter that she lost a great deal of schooling, but thankfully she never blamed me and has been the most supportive of all my siblings.
Whilst many Thalidomide children had been abandoned in institutions [euphemistically known as ‘care homes’] I grew up with a large, boisterous and relatively happy family. I was blissfully unaware of the struggles that my parents were left to get on with, virtually unaided by any outside agencies.
But the one big downer to my innocent carefree years was having to wear bloody artificial legs, from the ages of eighteen months to about thirteen years. [1]
Today, there are fantastic prosthetics available ~ they are lightweight and built of materials such as carbon fibre. You’ve seen the amazing feats that can be achieved in them during the Paralympic games for example. Even the ones provided by our NHS are very skilfully designed and technically proficient. Bionics are now even being developed, whereby limbs can be controlled via thought and electrical impulses in our brains. But the legs I had to wear, from the age of about eighteen months, were very basic to say the least. The design of them hadn’t really changed much since World War One. They were made with basic materials including leather, metal, wood, straps and shoelaces. The legs were extremely heavy, achingly uncomfortable and very dangerous to wear.
The picture above is of me and my younger sister Liz and we are about to go to my cousin Eileen’s wedding. I’m holding onto the door knocker because I’m terrified of falling over. Without arms to help me with my balance or to break my fall, I would just fall forwards or backwards, crashing straight to the ground like a tree trunk.
The first time I was knocked unconscious was when I was pushed over by other kids at the ‘special school’ when I was aged five. I was flat out cold and ended up with needing stitches in the back of my head. Throughout my childhood I broke my nose, twice. I smashed most of my teeth and I had to buy costly titanium implants for my lower jaw when I was in my 30s. Teeth are very important ~ especially when you have no arms to tear open packets, open drinks cans or turn bottle tops etcetera.
I can’t emphasise enough how much I hated wearing those legs ~ they were so uncomfortable and extremely impractical, it would take me so long to get from one end of the room to the other it seemed more of a punishment to wear the sodding things. They failed in function, they failed in design and failed in aesthetics. I looked ridiculous in them.
As I got older those things became even more dangerous ~ I became taller and of course I had further to fall. It used to be an immense relief getting out of them. I couldn’t get in and out of them myself as my hips were squeezed and strapped into leather buckets with tight shoelaces.
The leather ‘buckets’ that supported my hips were tailor-made and contoured to my body shape. To do this the whole of my torso from the waist down was encased in plaster of Paris. I sat in a large sling that was attached to a metal frame, which left me hanging in the air and the ‘technicians’ got to work on dipping plaster and cotton bandages in buckets of water and then placing them all over me from the waist down. This procedure wasn’t painful but often ticklish and it took ages. Even now, some forty years later, I still remember the smell of the wet plaster on the bandages. Then I would have to sit there suspended, immovable, helpless and bored for what seemed like hours, until the plaster finally set into a hard cast. Then the hardened cast would be carefully cut into two with a saw and it was ripped away from me. It was fine when I was a toddler and young boy, but hitting puberty it became agony. They didn’t shave any area first so a lot of hair would come away with the plaster. I empathise when ladies scream from waxing — but I reckon my pain was worse!
The plaster mould would then be turned into leather casings that were meant to be a precise fit. This was rarely the case as the legs would often pinch an area that I couldn’t reach due to having no arms ~ my arse!
Here is a scene in the TV documentary ‘World In Action — A Day in the Life of Kevin Donnellon’ (1972) where I’m in my junior school, aged about ten. I’m walking across the room in my artificial legs, the school nurse is holding my hand. I’m moving forward very slowly. The legs are ridiculously wide apart as if I’m straddling a horse. There are loud thumping noises as the wooden feet hit the floor, which gives an indication how heavy and tiring the things were. The school nurse asks “Are you comfortable?” — she must have noticed the strain on my face as I’m heaving with my whole body the leaden weight of metal and wood below me. “Yes, thank you” I reply politely but labouredly. “Are you sure?” she persists, but I just manage a strained smile in reply, as I’m already exhausted.
Another consequence of the legs was the lasting and continual pain in my back. I thankfully gave them up by the time I was thirteen. By then I was attending a large comprehensive school with hundreds of kids rushing around, me having to carry books in a shoulder bag and even getting told off by some of the teachers for being inevitably late for classes; in this environment, the fake legs were even more impractical and dangerous.
Though I’ve not worn them for over forty years, I still suffer pain in my hips, my back and my neck [the lower vertebrae are now fused together, as I found out two years ago when an anaesthetist tried to inject an epidural, it was agony. He kept prodding for ages wondering why the needle couldn’t fit in the gaps of my spine — during the subsequent operation an x-ray revealed the spinal fusion]. Even just typing on my computer for a few minutes causes me discomfort. I remember seeing an orthopaedic consultant at the local hospital, I had been suffering all the symptoms of sciatica. He put up an x-ray of my lower torso and perused the jumble of bones were my hips should be. “Goodness me! What have we here?” he exclaimed. “Well, you’re the expert!” I replied and smiled sardonically.
Although nowhere near as dangerous or as uncomfortable, the artificial arms were more useless than the legs were for me.
Again, the design was antiquated and the basic materials used were heavy. The arms were operated by gas and you had to carry a big cylinder on your back ~ when you raised a shoulder you could hear the gas hissing out and the ‘claws’ on the arm would then open or close. The picture above of the back of the arms shows the tube that would attach to the cylinder.
Just imagine walking in those crappy legs plus carrying a great big gas canister on your back and those bulky useless arms pressing heavily down your shoulders. Everything made from heavy materials, with leather straps. tightly fastened around both your chest and your waist!
Fortunately, my mother realised that the artificial arms were completely useless (I could do more things with my real hands, even though they were short and missing a few digits) and I gave them up when I was about six.
The photo above features the very last pair of legs I wore and you can see how unsteady they look and how very low-tech they are. I’ve kept them as a macabre souvenir to remind me of the torture.
One of the bright ideas that the doctors came up with, supposedly to help me fit into my artificial legs more comfortably, was to chop off my feet! Thank goodness my mother refused them permission ~ they chopped off a Thalidomider friend’s feet and he now suffers from even more severe back pain than I do.
The doctors in those days were very keen to chop bits off us. Like cake makers cutting away uneven or excess sponge, they tried to mould us into ordinary body shapes with sharp scalpels. They even wanted to chop off the half finger I have on my right hand. I can’t actually move this finger but I do have a sense of touch in it. I’m glad they didn’t remove this apparently useless appendage as when I used to smoke, it came in very handy for holding the cigarette in the cranny.
Denied the opportunity to amputate my feet, the medics tried another tack. When I was around seven years old I was hauled out of class to go to the medical room. Two smiling women in white uniforms were kneeling on the floor. The physiotherapists had long galvanised metal springs with straps at either end. The school nurse lifted me out of my wheelchair and laid me on my back on the floor and whipped off my trousers. Then one of the smiling ladies strapped the spring around my right ankle and tied the other end around a thick central heating pipe. It was never explained to me at the time why they were doing this, but the reasoning was that they thought my bones were still supple enough to be manipulated and bent to the desired contortion they wanted. Addressing the floor at a 45º angle, my ‘perfectly formed feet’ were deemed a problem from the start — in terms of the artificial legs the doctors were all so keen to fit me into. Thus these rigorous remedial treatments were routinely applied, with many hours of my early years spent on the carpeted floor of that medical room. After the straps were tied round my ankle very tightly I was encouraged to roll over — often they gave an encouraging shove. Initially my bones obstinately refused to comply and the pain indicated as much. Pulled taut, this coil, would force my torso to the floor, and — a cupping hand relieving the pressure on my spine, as I was rolled — I would be rolled back out, again. Then my foot would be untied and my other foot tethered in the same way and the same process started again.
They were hoping to manipulate bones that were not yet fully formed, so that those recalcitrant feet would more closely approximate the right-angles necessary to sit them in their ill-fitting prosthetics.
This was partially successful. My right foot now lies flat to the floor but my left foot, although initially did bend flat, sprang back up — but not quite as high as before. I don’t walk on my feet and they are very sensitive to touch.
Needless to say, although my feet slid into the leather harnesses easier, I still found those damned legs impractical and dangerous. My artificial limbs failed in the two basic tenets of design; functionality and aesthetics. They were practically useless for walking and they were not even remotely ‘normal’ looking. The ethos of the medical profession in those days was ‘normalisation’.
Instead of society accepting difference, in those days we were expected to conform to their idea of ‘normality’ by various means including medical intervention, or we’d be shut away.
Here is a link with a short film featuring yours truly, living with my future wife Angela and our daughter Daisy then aged two, in my old flat — from a feature by The Sunday Times newspaper:
I’m sure the medics were well intentioned and believed they were caring, but the thinking behind it was that if we looked more ‘normal’ we would be accepted by society. We could ‘fit in’. This is the now discredited ‘Medical Model of Disability’ whereby the emphasis was on either curing or disguising any impairment. Any difference from the ‘norm’ was seen as highly problematic and many ‘severely’ disabled people were hidden away from society by being incarcerated in vast institutions or confined to their family homes.
Although I was not ‘politically aware’ in terms of being a disabled person when I gave up those awful legs at the age of fourteen, I vowed I would never bother with prosthetics ever again, no matter how advanced they might become. [2] I was very happy with my body shape and it was nobody else’s business as to how I looked or moved around. Hopping around on the floor in my home I felt free and above-all safe ~ and this was perfectly ‘normal’, to me.[3]
[1] I won’t dignify the antiquated things I wore with the term ‘prosthetics’.
[2] I foolishly tried them again at 19 — but it was an utter failure, but that is another story for another time.
[3] The vast majority of Thalidomiders equally hated those early prosthetics and most (but not all) have now given them up.
— — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — — —
All my posts are now free to read on Medium whether you’re a member or not. If you would like to buy me a coffee it will be so appreciated and you can do so through my Ko-fi Account thank you! :)
Visit my website kevindonnellon.com
