Designed by Disability

I’ve been pondering on the appropriateness of this blog as I always question why I’m sharing what I do, is it going to help anyone, is it interesting or useful? I’ve decided to share the relationship between my disability and desire for creativity and why that’s lead me into interior design; afterwards you’ll know a little more about me and I can share a happy story of no limits. There is no room for a mood hoover over here!

At a time when Laura Ashley comforters, chintz and peachy pastels were on trend, I was born with a very rare vascular condition called Klippel Trenaunay Syndrome (KTS), which is the result of a gene mutation during early development. It’s so rare I don’t often meet medical professionals that know what it is, and I’ve been known to wind up nursing staff post-surgery when they ask if my toes are normally blue. At the time my parents were told I was bruised from birth but had concerns that wasn’t correct, due to the condition being so rare it wasn’t until I was about eight that I was diagnosed by specialists at Great Ormond Street Hospital, by which point I was living a normal childhood (less the bouncy castles, roller blades and running) and I’d started to discover my pain and strength limits. Knowing that running around caused me pain I was a huge fan of a craft box, I’d spend all my birthday money in Toys R Us on Crayola supplies, notebooks, sticker making machines (remember those?) and pencil cases. I could never have enough, especially the rectangular plastic mechanical ones with all sorts of compartments and built-in pencil sharpener. After hospital appointments Mum would take me to John Lewis where we’d look at fabric, I’d sit on a pile of rugs, then we’d go to the haberdashery department before going to choose a treat from the stationary selection. On days when I was in a lot of pain (and some days when I pulled a fast one), I’d spend the day with Mum, either surrounded by my sketchbooks and crayons or fabric scrapbooks, cotton and needles. Mum has an eye for the most fabulous fabrics and during my childhood she made some pretty desirable pinch pleat curtains for some outrageously large windows, and guess who went along for measuring up and fitting? If I couldn’t go on school trips I was sure to swing some time off to go and nosey around beautiful homes of the peak district, including a sports star of the time.

This is where I think my interest in interior design began. I couldn’t excel in physical activities or sports, I did the javelin uselessly every single sports day and I don’t think I ever did a practical PE lesson, but what I could do was combine colours and textures, and work towards a vision. I used to turn shoe boxes into miniature rooms, draw houses with perfectly symmetrical windows (and swags and tails) and create collages using offcuts of James Hare silk. Spending a lot of time resting up also gave me hours to invent and solve layout problems in my childhood bedroom; I want my new (horrifying) tatty teddy to go on that shelf but then where will my beanie baby collection go? The flower fairy jewellery box needs to go on my dressing table but where will I put the fish tank? You get the idea, so I also, somehow, would empty my tiny bedroom and reorganise it. Probably once a month. One time I begged my parents for a new bed because the bed at the time was an obstruction to my wardrobe, I remember returning from a sleepover at my Godmothers house to find a newly decorated bedroom with new bed and hand sewn patchwork quilt. They did a weekend makeover job and I loved it!

Years later when I wasn’t decorating a dream house on paper or Sims I was revising or completing coursework for my favourite A-Level subjects, interestingly health and social care (the subject I now teach), drama, and art. I was aspiring to be an infant teacher and qualified at the time when my ankle had started to protest. At the start of my career I had a failed operation to try and shave the joint and then stayed out of theatre for as long as I could so I was able to enjoy teaching lots of young children to read and have big dreams! In 2019 I was extending and renovating the 1960’s bungalow and enough was enough, the grumble of bone rubbing on bone had become too painful, arthritis and cartilage damage is quite common with the condition, so I had an ankle fusion. Navigating a building site, on crutches, occupied mostly by tradesmen and tools was all part of the fun, they had to take over making the cups of tea for a while. Having my feet up gave me time to research tile choices, engineered oak flooring options, appliances, taps and source furniture (we didn’t stay long enough to get too invested in accessories sadly but that’s the Cornwall Curveball), and I had a lightbulb moment. Just a flicker though. Soon after my best friend flicked the light bulb back on properly; I'd really enjoyed designing my past three homes and we both thought I was doing quite well at it. So, I started to pay attention to this interest that sparks much joy, who said I can’t teach and design interiors?! Then we moved house. Then I had my most recent operation.

Living with KTS has given me lots of skills, traits, and experiences, of course it has taken things away, but I truly believe that I wouldn’t be who I am without it. Cliché? Yes, but very true. I’ve had ten operations in fifteen years, including correction for an accidental tibia and fibula break, the ankle removal (technically a fusion but removal sounds more dramatic), and most recently 2cm chopped out of my femur on the 'good leg'. That’s a long story, and I didn’t have this operation for pain reasons, but hopefully it’s going to make me more stable on my feet and safer for the future. Preparing for and recovering from operations has been a guaranteed route to develop determination and resilience. It’s a compliment from those who know me, but it’s just happened. I’ve known nothing other than to push on and reach the goal, even if there’s going to be a step back again in the future. Perhaps that’s why I was able to survive 13 months without a kitchen when renovating our last house. Admittedly it is tiring and sometimes I want the challenges to be over. At the moment I’m trying to learn to walk again, amongst my doctors there’s talk of having sclerotherapy treatments (a solution is injected into veins to scar them and reroute the blood flow) and I’m awaiting results from seeing a team of specialist in London on some big questions I’ve asked about my future. Thankfully I’m well-rehearsed at this dance, I can see the full process, but I can take it one step at a time, a bit like designing our new house (which for obvious reasons is just simmering for now).

KTS has given me creativity, vision, determination, and resilience but what I am most passionate about is that home should be the most perfect place in the world, for everyone. When I come home and close the door there is no longer a worry about tripping on a root that’s grown up through a pavement, having to walk too far than I can handle to a toilet, slippery tiles in a shop doorway, the distance between parking and my destination, and people, although often kind may just say the wrong thing on the wrong day. Closing the door to all of that and walking into a home that allows comfort, brings calm, and is practical in every way is so important to me. I recognised my washing got done regularly when I lived in a bungalow because I no longer had the fear of carrying washing up and down stairs, sometimes we have to take a step back and identify what we really value and what we need. Recently as we find the pain points in our current bungalow the list of things to include in our redesigned and extended home grows; a shower that has a built-in seat (stylish of course and definitely not plastic), somewhere to sit and prepare food, wide open spaces, minimal transitions between rooms and of course the bedroom needs to be a total sanctuary. Our homes are our biggest expense, it’s a venue we pay to live in, and it simply must work hard for us and be absolutely fabulous!

I'm influenced by my environment, we all are, that is why I’m learning to use SketchUp auto cad software and studying as much as I can about interior design. I’ve made a commitment to myself to ensure our home is well designed and evolves to be our favourite place in the world, but I know that feeling is so good that I need to spread it as far and wide as I can. In the future I hope to share my message, and change the lives of homeowners along the Cornish coast.

I am not defined by, but designed by, my disability.

Charlotte

If anyone reading is affected by Klippel Trenaunay Syndrome, a disability or any other rare condition and you would like someone to talk to my inbox is wide open so do get in touch. #strengthinnumbers