Behind the Mask

Seeing the Person Behind the Disability

At first glance, people may see my wheelchair, or the physical differences caused by my disability. They may not see the person sitting behind them. They may not see my
determination, my sense of humour, my love of adventure, my friendships, my family, or all the things I have achieved throughout my life. That is the message I want people to understand: look beyond the disability and see the person. I was born on 16 March 1966 in St Edmunds Hospital in Northampton and grew up in Corsham.
When I was five years old, my life changed dramatically. I suffered a left-sided stroke caused by high blood pressure and also was diagnosed with Neurofibromatosis Type 1, which caused benign tumours to appear across the whole of my body.

For many years, I was in and out of Great Ormond Street Hospital in London, receiving treatment and support. After my stroke, I had to learn many things again. I had to learn how to use my left hand, even though I was naturally right-handed. I had to learn how to walk again and initially needed a calliper to help me. I also had speech therapy to help me talk, as well as regular physiotherapy at the Royal United Hospital in Bath. During this time, I was home-schooled and had a lot of catching up to do.
Eventually, I returned to mainstream education. I attended Corsham Regis School and later Stonar School for Girls. My disability was visible, and unfortunately, that made me a target for bullying. I was bullied because of the distortion of my arm and because I walked with a limp. At St Lawrence School, where I attended as a day girl, I also had to deal with the physical difficulties of getting around. I had to leave every lesson five minutes early so that I could manage the stairs and reach my next class on time.
Those experiences were difficult, but they did not define me.

From 17 to 18, I attended Lord Mayor Trellors College in Alton, a boarding school for disabled students, where I studied a City and Guilds course in craft and design. After college, I began to venture into the wider world. I was fortunate to have people around me who supported and encouraged me, including my mum, grandparents, medical professionals, friends, teachers and my church community. My mum has always been my rock. She has been there for me every step of the way, and Ihave always admired her strength and determination. Her influence undoubtedly helped shape the person I became. My stepdad Keith was also a huge support and brought me up from the age of thirteen, treating me as one of his own.
Reading and poetry also became important parts of my life. Writing poetry and getting lost in books gave me somewhere else to go when life was difficult. I also worked with Job Force to look for employment. Although I did not get a job through the process, it helped to build my confidence.

At the age of 30, I decided that I wanted more independence. I had been living at home with Mum and felt ready to have somewhere of my own. I moved into a lovely one-bedroom flat in Bennett Street in Bath, close to the town centre. I could walk myself into town for the shops and cafés, and Mum visited every other day. For me, this was freedom.
I joined poetry and reading groups at the library and completed a computer course, achieving 40 words per minute on a keyboard using one hand. I also had Sox, my cat, for company. Life was good.

 

Then, at the age of 45, I had an accident at home that changed my life again. I bent my right leg underneath me and was left unable to care for myself. From that point onwards, I became a full-time wheelchair user.
I moved to St John's Sheltered Housing, where I have lived ever since. At first, I did not feel as though I fitted in. I was the youngest by far, and it was distressing to
suddenly need help with personal care. But I decided to stay, make the best of things and get
on with life. I decorated my flat and made it my own, gradually making changes to make life
easier.
Over time, St John's became my home.
There are many good things about life here. I do tai chi every week, play board games with
other residents, attend a religious group and enjoy entertainment ranging from singing groups to
visiting cello, guitar and violin players. There are coffee mornings and raffles, and I seem to
have a reputation for winning some very good prizes!
Most importantly, I have made friends. Yvonne, Amanda, Jenny and Mike are all part of my life
here. We support one another, laugh together and help each other through the difficult days. We
may have our little habits and differences, but that is part of being human. Friendship does not
require perfection.
My cats have also brought enormous happiness into my life. Sox came with me to St John's and
was wonderful company until he died two years later. A year after that, I got Smudge. He is still
with me today and makes a huge difference to my life. He has some interesting habits, including
constantly licking my nose, and he is adored by the carers and residents.
Although life has not always been easy, I have never been someone who wanted to sit back
and let disability stop me from experiencing life.
I have travelled to Corfu, Malta, Wales and Canada. I have memories of family holidays filled
with fun and laughter. In Canada, I experienced temperatures of minus 37 degrees and even
found myself stuck on the ice fields when our coach broke down. There were thirty of us sharing
two packed lunches while we waited for the driver to fix it!

I have also had some incredible adventures.
I have always loved sailing, an interest that began with my grandparents and their boat, Jenny
Joala. Between 1985 and 2014, I took part in eight tall-ship sailing trips with the Jubilee Sailing
Trust. These voyages were specially adapted to allow disabled people to take part. I sailed on
Lord Nelson and Tenacious, experiencing huge waves and even going up the rigging in a
manual wheelchair to the first platform. We were even on BBC Songs of Praise!
On one occasion, my wheelchair brakes failed while I was 80 feet in the air, leaving me swaying
around. Fortunately, we wore harnesses and protective gear. It was frightening, but it was also
an experience I will never forget.
Sailing is only one of my adventures. I have tried microlighting, horse riding, abseiling and hot-
air ballooning. I once went hot-air ballooning over Bath, and the landing was incredibly bumpy. I
was about 50 years old and still had no fear!
I have also met members of the Royal Family, including Princess Anne. These are experiences
I treasure, but they are just some of the many things that make up my life.
I have faced plenty of embarrassing and funny moments too. I have fallen off horses, landed in
mud and lost a welly. I have been stuck in my wheelchair in gravel and once got stuck in a door
at St John's, resulting in a broken ankle and another hospital stay. On holiday in Corfu, my bed
collapsed beneath me, leaving me sleeping in an arch! Another time, our hire car broke down on
a steep hill in the middle of nowhere.
Looking back, I can laugh at many of these experiences. Humour has helped me through some
very difficult times.
If I had to describe myself, I would use words such as proud, gutsy, positive, determined,
strong, loving, caring, grateful and tenacious. I also have a few simple mantras that I try to live
by: never give up, you can do it, glass half full, positive mental attitude, no such words as “I
can't”.
Instead, I say, “I can. I will.”
But there is one thing that concerns me more than anything else. It is not my disability itself. It is
the possibility that people will never get to know the real person behind it.
I see it when I meet new people. Sometimes I can see fear or nervousness in their faces.
Perhaps they do not know what to say. Perhaps they make assumptions about what I can or
cannot do simply because I am in a wheelchair.
My greatest ambition is to change that.
If I could do one thing before I die, I would want to re-educate the world about disability. I want
people to look beyond the wheelchair, the physical differences and the labels and see the
individual.
People with disabilities are not simply their disabilities.

We have feelings. We hurt. We laugh. We have weaknesses, but we also have strengths that
other people may never see. We have dreams, ambitions, interests, relationships, talents and a
sense of humour. We want to be included, respected and treated as individuals.
Most of all, please do not assume that we are less capable or less intelligent. And please do not
feel sorry for us simply because you see us in a wheelchair.
I have had to be strong because life has required me to be strong. I have faced challenges that I
never expected, but I have also experienced adventures, love, friendship, laughter and
independence.
There is still more that I want to achieve. My dream is to give motivational talks and share my
story with others.
I want people to understand that the wheelchair is only one part of me.
There is a whole person behind it.
And that person is Helen.