I came bouncing into the world in January 1978 at a very impressive 8lb 6oz. This was spectacularly remarkable as I was born with a condition called Osteogenesis Imperfecta Type 3. Mum and Dad had no idea that I would be any different, so when doctors told them to just leave me at the hospital as I wouldn’t survive my first week on earth, they were shocked. Fortunately, they didn’t accept that, and I also had other ideas! Forty-four years later, I am still here to tell the story.
Osteogenesis Imperfecta basically means ‘brittle bones’. As I have grown up, I have broken over 300 bones, but being truthful I stopped counting years ago. I am 3 feet tall and use a powered wheelchair to get around. As a baby, the medical profession at my local hospital didn’t know enough about the condition and broke more bones than they were healing. I can only imagine the relief my parents felt when by chance they stumbled across an article in the News of the World about another little girl, who couldn’t be cuddled for fear of breaking, and it gave the contact details of a charity in Dundee called the Brittle Bone Society. Dad got in touch with them and that phone call saved my life!
Moving forward to 2022, I have relocated from the little town in North Yorkshire where I grew up to the bright lights of Newcastle upon Tyne. I have lots of very grown-up things to coordinate just like we all do: A mortgage, two jobs, my own business, friends, family, and a gorgeous little Chihuahua called Annie McFluff. There have been challenges along the way though. We must all be focussed and resilient to live the life we dream of, but for me as a disabled person, there are additional hurdles to overcome.
My family, friends and the Brittle Bone Society have always been amazing at boosting my confidence. When the education authorities came to our family home and said they had secured a place for me at an excellent ‘special school’, Dad first said his favourite phrase; “She isn’t in a special world, so placing her somewhere special won’t help her learn how to live”. The battle for mainstream education began. I was the first wheelchair-using pupil at Bedale Primary and High School, which I loved! Dad passed that phrase on to me, and I still remember the first time I used it. A meeting with a career teacher at school, where she told me that getting a job would be hard, but there are special schemes for people like me, and maybe they could get me a placement in an office. Considering I went into the room, saying I wanted to be a midwife, this wasn’t the advice I was looking for.
The Brittle Bone Society gave me and my family a supportive community to be a part of. It raised our expectations of what is possible and equipped us with the expertise and confidence to navigate life. After school, I decided that being a 3-foot-tall midwife, possibly wasn’t one of my best ideas, so I pursued a degree in Organisational Behaviour and moved to Newcastle in 2001, where my job prospects were much better. Of course, job prospects were not the only advantage as I certainly soaked up the nightlife, which I still do, although I am maybe not quite as wild as I was in my 20s and 30s.
It’s the little challenges that I find the most frustrating, like having a cracking night out and then not being able to get an accessible taxi home in the early hours. Or searching for your first home, but struggling with viewings, because the properties are not accessible. These are daily challenges, but I know that by raising awareness we will eventually overcome them for future generations.
I am forever grateful to the disabled people before me, who fought for the right to live independently and campaigned for Direct Payments, which enables me to employ a team of Personal Assistants to give me a hand with the things in life I find difficult or impossible. I never planned to be an employer, but now that I have been doing it for well over 20 years, it is just a part of life, and I wouldn’t change it for the world.
Just like most of my friends, the pandemic and being furloughed gave me lots of thinking time. I have always had a passion for personal development and have journaled, and practised mindfulness and meditation for years. But for me, the pandemic was a wake-up call that I wasn’t living my working life with purpose. I needed to change, and I knew what that needed to be.
There are very few people who can float through life without a single wobble, and disabled people are no exception to this. Despite the huge number of self-help books and websites, I have never found an inclusive and accessible personal development system, which includes the expertise to coach people to overcome the specific challenges, feelings and emotions disabled people face. That is why I founded my own business ‘Dare2byou’ to do exactly this. I love the freedom of having my own business, the creativity and knowing that my work is aligned with my values of independence, connection, and respect.
I can’t wait to see what the next 44 years of my story will bring.