Mary Ann, 15

January 6, 2019

 

The youth of today don’t get much credit, do they? People are quick to write them all off as being self-obsessed snowflakes who can name more influencers on Youtube than politicians. Well, every now and again you come across someone who breaks the mould, and it restores your faith in tomorrow. They make you realise that the future might just be in safe hands after all. 
 
Mary Ann is an only child and lives in a flat in West London with her Irish dad, her Filipino mum, and their cat, Tammy. Whilst I am there, her mum makes me a huge bowl of vegetable noodles and presents them to me on a tray in the living room. Her parents are pleased to have me there and I am treated like a queen with offerings of tea and Oreos and cake coming thick and fast. Their flat is modest and cosy, and everywhere you look in their hallway, bathroom and living room, photos, drawings and achievements of Mary Ann adorn the walls. Photos of her as a baby, and in her Holy Communion dress, handmade Father’s Day and Mother’s Day cards that she drew as a younger child have been kept, as well as school reading certificates and attendance certificates and star pupil certificates. She is a cherished and celebrated young lady.
 
In lots of ways, Mary Ann is a typical teenage girl. She is 15, soon to be 16, and loves hanging out with her friends, baking cakes, horse-riding, going swimming and instagramming her cat. She spends her weekends doing all of these things, as well as frantically cramming for her GCSEs which she'll complete this year. She would like to study politics at A-level and is passionate about English and history, devouring books like other kids might devour on-line hair tutorials. This is a girl after my own heart. 
 
What distinguishes her from her peers and many teenagers her age, is that Mary Ann is a wheelchair user. She has a rare condition called Lateral Meningocele Syndrome, which affects her joints, bones, nervous system and her growth. As a younger child, she had been able to walk with leg splints and crutches, but for the past several years, Mary Ann has had a blockage on her spinal cord preventing any movement in her lower limbs. She also wears a hearing aid, and has recently been fitted with a new device that sits on her head like a headband. Since birth, she has had seven operations to treat the various symptoms of her condition and is due to have further surgery later this year. 
 
“I think I had three operations when I was young that I don’t remember and four that I do remember. Two were on my feet, one was on my back, one on my jaw, two on my knees, and one on my ears. I am planning to have another on my spine later this year.”
 
When she was nine, the doctors suspected that Mary Ann had a condition called Hajdu Cheney Syndrome and she frightened herself by reading about potential medical procedures on Google, coming across all these unknown words and discovering what the future might have in store for her. She didn’t want to be considered ‘disabled’ and shunned the term, flinching whenever a doctor or somebody else referred to her as this.
 
“We often associate disability with failure, being a lesser person, and not being able to function properly. At nine, I didn’t want to believe I was disabled because I thought if you were disabled that meant that you wouldn’t be able to live life properly. Deep down I knew I was disabled, but I didn’t want to be and I was ashamed.”

I can’t imagine being forced to come to terms with something like that at such a young age, and being thrown into a very adult and very frightening world of surgery and medical procedures without any choice. When I was nine, I spent my time rearranging my Take That posters and taping songs off the radio. I had no idea how privileged this was.

In time, Mary Ann learnt to not only acknowledge but embrace her condition and accept that although she may indeed be ‘disabled’, her dreams, her talents and her potential are still boundless. 
 
“Growing up, I’ve realised that having a disability is nothing to be afraid of. Disabled people can be happy and now, at 15, I can say that I am happy, proud and living with a disability. You have to appreciate everything you can do, and not complain about why you have this condition because if you do, you won’t be able to live your life.”

Mary Ann is now a passionate advocate for wheelchair users, especially in London, and she hopes to be part of a movement that can bring about change in the future. She has currently been waiting 10 months for a suitable wheelchair, and her family are on a waiting list to find more suitable accommodation that meets her needs - an apartment that is either on the ground floor or in a building with a lift. There are many areas in life where Mary Ann feels that wheelchair users are let down or excluded from society because of limits to certain services and a general lack of awareness. She is keen to raise the profile of these issues in order to change them for the better. 

“Nearly every day I get on a bus and on almost all of these journeys, there is a problem because either there’s a pram or luggage in the wheelchair area, or the ramp doesn't work. Or, when shops in town have steps at the entrance which means I can’t enter. Or, when tube stations or shops don’t have a lift. Not being able to do the things everyone else does makes me feel as if I’m not a part of society.”

Despite these challenges, Mary Ann hasn’t let her disability stop her achieving everything she wants from life, and if anything, it’s spurred her on to take advantage of more opportunities than other people her age. It’s as if she sees every opportunity as a way to challenge and better herself, and passing up on any of these experiences would be a waste. Maybe you have to be told what you can’t do, in order to really show what you can. 

She is currently in the middle of completing her Duke of Edinburgh award, awaiting a date to complete her expedition. She goes horse riding every week, and in November last year won the Jack Petchey Award for her commitment and improvement in this field. She spends four mornings a week helping younger students at her school, whose first language is not English, to read, and she’s also one of the great movers and shakers on her school council.
 
“I love being able to make decisions that change the school in a positive way,” she writes in her sixth-form personal statement, which her dad proudly presents to me to read while I am there. “I believe it is so important that each person’s voice is heard because each of our opinions deserve to be valued.”

At the age of 12, after recovering from major surgery at Great Ormond Street Hospital, Mary Ann won a personal achievement award at school for showing great perseverance and determination 'through thick and thin'. Much to the doctor’s disapproval, she returned to school sooner than advised, with both legs in casts up to her thighs, because she was keen to not fall behind on her studies and miss out on the important social elements of being at school. 

“I was in hospital for nine days and had to stay at home for another three weeks and in that period I had missed the beginning of Year 8/9, school photos, GCSE options picking, and although this might not seem like much, I just wanted to be like everyone else.”

I would love for every disaffected kid who can’t be bothered with school to spend just 15 minutes with this girl. I think they’d benefit from listening to what she’s got to say. She is a teacher’s and an employer’s dream, and although Mary Ann feels that the future is uncertain for her as a wheelchair user, because of the stigmas she might face in the workplace, all I can see is living, breathing proof of what a credit she would be to any establishment. Her sixth-form application and future CV will no doubt shine astoundingly brighter than all the rest. 

She is optimistic and open minded about the future, and in five years time she would either like to be at university, or in a job that she loves. She doesn’t know what that might be yet, but she does know that she wants to help people. 

“I hope that wherever I am and whatever I am doing, I'll be happy. I would also like to continue crushing the stigma surrounding disability!”

As Shakespeare famously said, “And though she be but little, she is fierce” and this is what runs through my mind as I compose this piece after our recent chats and email exchanges, the most inspiring story I’ve had the privilege of telling to date. 

Shine bright, Mary Ann. The future is all yours.

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