Personal Blog – maintaining independence through changes to disability and mobility.
Background.
I was born with a genetic condition called Diastrophic Dwarfism or Dysplasia. There are over 200 known types of Dwarfism, my specific type meant that I had shortened limbs and would only grow to the dizzying heights of 3 feet 8 as an adult.
I had further complications of degenerative joints through arthritis and talipes feet which were turned inward. So much of my childhood would require annual corrective surgery, recovery and learning to walk again and continued multiple joint replacements later in life as my joints began to fail. So, my mobility was severely limited, but I could walk a little albeit tiring and painful.
To be able to take part in everyday life, help would be needed to assist me in my mobility for anything other than walking very short distances.
Early Years
To help with my mobility in my childhood years I had to rely on a range of aids for my mobility. These included orthopaedic shoes, crutches, walking sticks and NHS provided prams and wheelchairs. Whilst these aids were essential for my limited mobility there were personal issues with all of them.
I would love to have been able to buy shoes straight from the shop like my friends but mine had to be made to accommodate my wide, different sized feet and were heavily built up to support my feet because I walked on the ball of my feet and toes (which required annual tendon lengthening surgery) The NHS orthotists tried to make them look good but in the early years were so conspicuous that they made me feel additionally marked out as different.
Crutches and walking sticks, although essential at times, highlighted my differences and as a child gave me a drive to try and manage without them, because they were objects that I associated with ill or elderly people. To be fair, they soon became an integral part of life when I was at school, my peers just accepted and accommodated them as part of my life, probably quicker than I did.
As for getting around, I was reliant on NHS pushchairs which were very identifiable. This was accepted by my friends and peers with many wanting their turn to push. The major bug bear with a non-self-propelled mobility aid is that the how and what route to get to your destination is another person’s decision. If they want to go here or there, then you go with them. If I am looking at something, the person pushing just carries on blissfully unaware, unless you stay stop, turn around which can be very frustrating.
Then something amazing happened, my parents bought me a bike, a tricycle! The pedals needed to be adapted for me to be able to reach and then I was off! Every morning, I cycled a mile to our village school, meeting up with friends on the way. The feeling of independence it gave me in my free time to go out at weekends and holidays was life changing. I really felt included! I soon progressed on to 2 wheels with another bike that my Dad adapted, now I felt really independent and included. It’s so good that nowadays there are so many companies designing and building adaptive bikes to cater for a wide range of disabilities!
Becoming an Adult
Life through my O and A level years (I’m showing my age now!) became easier to physically get around. Although brought up in a very working-class coal mining family, I was very lucky and grateful to my parents for sending me to Public school. As the time came to move on to secondary school, we were told that I would not be accepted in a mainstream State School and I would have to attend a “Special School” as they were known as back then, before the Disability Discrimination Act came into being.
So off I went to boarding school along with my wheelchair and bike. A nervous time in anticipation of how I would be accepted. But I needn’t have worried as my peers just saw me as the person I was and although back then the 500-year-old school was not adapted in any way shape or form, my fellow students were always keen to help get me around in my wheelchair and carry my school bag up the stairs to classrooms and help me any way they could.
Finding solutions to participate in every activity not only made me feel included, but it gave me a great sense of being independent. Then I turned 16 and my personal independence and freedom was about to change dramatically... I was old enough to drive!
My parents organised my first car through Motability. A Talbot Samba Montecarlo edition which we took to have pedal extensions made and an extension on the gear stick as it was manual transmission. At this stage I was allowed to go home at weekends, about 35 miles away, where my dad would take me out in my car for drives in the country, so that I could get some practise and driving experience. I could pick where we wanted to go and occasionally, he would let me drive all the way home from school.
I had never experienced freedom like this before and then it was time for my driving test. I had recently had surgery on both legs when my driving test date arrived and only had been able to fit 4 lessons in with a qualified instructor but had many hours driving with my dad. Both of my legs were in plaster casts on the day of my test, and I had to spend the first few minutes reassuring the examiner that everything would be fine, because I don’t use ankle movements to operate the pedals, the plaster casts were no different to wearing my orthopaedic boots. So we set off and within a couple of minutes I had to emergency stop when a dog ran out in front of the car. Danger averted, the examiner was now at ease, and I carried on… Test passed!.
I was given special permission to keep my car at school and I could take myself to and from there each weekend, but even better I could take my school friends out to places. Imagine, me being able to be in control of other people’s mobility for the first time. Now this was what real freedom felt like!
Working Life
After finishing ‘A’ levels I decided to find a career rather than go to University just yet and it dawned on me that the mobility that a car brought me, I could apply for jobs anywhere! I received an offer to work for a bank in York which I provisionally accepted but then received an offer to work for another Bank in London, within a couple of days I had bags and wheelchair packed into my little car and was heading from Yorkshire to begin a new life down south.
Being able to drive enabled me to just slot into life like any other working person, going to and from work and social days/evening out. Yet I would be constantly reminded of my limitations with mobility when arriving at destinations that were inaccessible. I was lucky that my friend group and work colleagues just accepted that my wheelchair was a part of my life and accommodated this by pushing me from venue to venue and pub to pub!
It was at this time that computers were really coming to the fore in the workplace so after a couple of years I decided to go to University to study Computer Science and business Management with French. I accepted an unconditional offer and when I turned up on my first day, the University told me they could not allow me to start because they could not accommodate students with disabilities… Welcome to University! This again was pre–Disability Discrimination Act 1995 and was like a red flag to a bull. I negotiated for them to give me a month’s ‘trial’ seeing as I was there with all my belongings in my car.
I had to work quick to find accommodation as they did not have accessible rooms in the halls of residence on campus. I was so lucky, the first call I made to the local Housing Association led to me moving into a modern, ground floor flat that had just become available and was right next to the Campus entrance. It meant that I could easily use my wheelchair to get on site.
I used my month’s trial to lobby the Student Union to create a post on the council to represent Students with disabilities and other needs, because every other student group seemed to be represented. They created a post, and I stood for election, and I won the role. I spent time helping students with disabilities apply for places, funding and other help. But most importantly I set about making the buildings accessible. We were having a new award-winning building constructed but access for disabilities was not a priority, until I got involved making sure level or ramped access was included and the doors easily opened etc. When the late Queen came to open the building, I was invited to have tea with her, but the University instructed me not to mention the original reception that I had on that first day.
Family Life
After University I embarked on a career in the Civil Service followed by Local Government, where I became a Principal Transport Planner. This was a great opportunity for me to put my lived experiences of mobility challenges directly into everything, from being given autonomy to design and implement award winning accessible on demand Transport services, to helping partners such as bus and rail companies ensure that services, infrastructure and information were accessible.
At this time I had a partner and soon I started to have issues with my knee joints collapsing. The left went first, and I was told by my surgeon that I would have to have my leg amputated. There was no way I was going to let that happen, given the number of surgeries that I had already had in my life just to be able to have the little mobility that I did have. So, I began a 2 year quest to find a surgeon that could offer an alternative, whilst in the meantime relying once again on crutches and a wheelchair.
This was a very dark time as it was impossible to drive the 39 miles to work, actually I couldn’t drive at all as I could not use the pedal extensions in my manual car. The sense of loss of independence and mobility was devastating having overcome so much to gain it .
I eventually found a surgeon in Sheffield who said that he had developed a new technique, and it might be suitable for me. He had designed a total femoral replacement, which was designed to save soldiers’ legs that would normally be beyond repair after injuries caused in war. Shortly after I had 2 surgeries to replace my hip, femur and knee with bespoke made components. And so began the process of learning to walk again. It was time to adapt my life to make things easier, so I decided to change my car from a manual to automatic and switch from pedal extensions to hand controls and have never looked back. Driving became even more pleasurable as there was no longer strain on my legs, on long journeys I could share the driving with my partner as there was no pedal extensions to remove.
The pressure put on my right leg compensating for the loss of use of my left leg for 2 years subsequently caused it to collapse too. So the process of losing gained mobility began again as I had a total femoral replacement on the right leg, followed by right shoulder and left ankle replacements.
During this time, I had been medically retired from my senior role in Local Government, I got married and had a daughter. Who, despite being born 9 weeks premature had not inherited my condition. It was a fabulous time because when I was learning to walk post op, she was learning to crawl, toddle and walk, her learning for the first time, me for the countless time.
Looking after my daughter during the day whilst my wife was at work, I was soon able to drive again and take my daughter out. This was an amazing sense of independence as a disabled father being able to do the things that other Dads do too.
Eventually my daughter started riding a bike. Strong as I am, keeping up in my wheelchair was not possible if we went out for a ride. A new solution to increase my mobility was needed and was found by my then wife who crowdfunded to have a handcycle built. Now my daughter and I could enjoy cycle rides around our country lanes together. A bit tricky but possible to transport, it travelled with us on family holidays around the UK and opened up new possibilities to explore further and longer.
When my daughter reached age 5, not only was she nearly as tall as me but she set me the most amazing challenge. She had seen someone with dwarfism doing Paralympic Powerlifting on TV . She had not really seen or met anyone with her Daddy’s condition before so said:
“Daddy do you think you could do that?”
I took that as a direct challenge as something I could try, because my daughter had only seen me in and out of hospital and had never seen any of my life achievements. So, the following week I joined a gym, got a trainer and started lifting weights, working hard at it, up to 4 times a week. Fast forward 1 year, equipped with just a rucksack and my trusty lightweight self propelled wheelchair, I was in Moscow at AWPC world championships taking my first World Title, competing in an able bodied federation.
The next year when my daughter reached the age of 6 and finally overtook me in height, sadly my wife and I decided to separate. So it was just my daughter and myself to carry on the journey. Over the next few years up to covid we went on holidays with my wheelchair, bike and my handcycle but more exciting was the powerlifting. Raising my daughter, I wanted us to carry on as before. We went on to travel the world as I competed internationally. Often just with backpacks and my wheelchair we would fly, take trains and coaches to destinations such as Finland, Switzerland, South of France and even as far as Florida, although we did take bigger cases to that World Championship and stayed a couple of weeks! In total I went on to gain 5 world titles and broke and set more than 12 federation world records (I’ve lost count!) None of this would be possible without my car, wheelchair and daughter with me to cheer me on.
Current Life
Since covid, as my daughter grew, her bikes got bigger and faster, my handcycle could not keep up anymore! I had trepidation about making the shift to a powered mobility aid, again, there seems to be that stigma that they are associated with the elderly and I’m not one for giving in without trying all options at anything in life! I spotted an importer of tiny scooters that have a 30 mile range, does 16mph and fits in the boot of the car so I took the plunge and my goodness how this opened the world up to new adventures!
Because it goes over really tricky terrain, we’ve had forest lodge holidays, been to woodland based festivals, taking it on a cruise ship and even on holiday to Tunisia. We can go out all day whether it’s just shopping and if my daughter gets tired she has been known to sit behind me and have a lift!
In March 2023 I was asked by Lynn and Kevin who own Driffield Mobility along with newly appointed Managing Director Andrew, if I would be interested in raising awareness of solutions to mobility issues, after they had seen a video that I made for a friend showing how my hand controls work on my car. I’ve been here since, trying to involve this amazing family run company in the wider disabled communities and organisations sharing not just information on products but advice about organisations on a wide range of disability issues.
During this time I had to have a second shoulder replacement which I had to wait 3 years to have due to post-covid waiting lists. (Obviously I’ve been lifting too much weight in the powerlifting career!) To be fair my mobility was not impacted too much as I was back at work after a couple of weeks and got taxis to work using the Access To Work scheme and was driving within 4 weeks. Fingers crossed that I will not require any more surgeries for a long while and whilst my walking distance and ability to stand for even short periods of time is shortening my ability to maintain my independence only seems to increase with the help of the innovations out there!
Click here for more information on dwarfism and support for them and their family and friends
