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Kuli Kohli- Writer With CP

September 1, 2020

Born in an Indian village with cerebral palsy, Kuli Kohli was lucky to survive. Neighbours told her parents they should throw her in the river, instead they brought her to the UK. As she grew up here, writing became her means of escape – and transformed her life in ways she never expected.

Waiting to be called on stage in her home town of Wolverhampton, Kuli Kohli felt sick with anxiety. She was petrified her words wouldn’t come out and worried she would fall flat on her face. Her heart soared and her nerves clattered. Self-doubt raced through her mind. “Why am I putting myself through all of this?” she asked herself.

The host welcomed Kuli to the empty chair that was waiting for her. It was dark, a spotlight illuminated the stage, and a small wave of applause rippled around the room.

Emerging from the side of the stage, Kuli nervously approached the mic. She took a breath and a few seconds of silence passed before she shared one of her poems with an audience for the very first time.

Mine

I have a dream; please don’t influence it,

It belongs to me.

I have a delicate heart; please don’t break it,

It belongs to me.

I have peace of mind; please don’t disturb it,

It belongs to me.

I have to follow a path; please don’t obstruct it,

It belongs to me.

I have an amazing life; please let me live it,

It belongs to me.

I have a choice; please don’t choose for me,

It belongs to me.

I have freedom; please don’t capture me,

It belongs to me.

I have incredible feelings; please don’t hurt me,

They belong to me.

I have a lot of love; please don’t hate me,

Love is mine to share.

I’m on my material journey; don’t follow me

It won’t be fair.

So… I have a dream; it’s my dream to be free.

Kuli had more reason than most to experience stage fright. She was born with cerebral palsy, a neurological condition that affects her speech, her movement, posture, coordination and balance.

Getting up on stage and pouring out her poetry was her victory against those who told her that her life wasn’t worth living because of her disability – that she would never amount to anything or achieve her goals. She was embracing and owning a part of her identity, something she had been made to feel ashamed of all her life.

In 1970, when Kuli was born in a remote village in Uttar Pradesh, northern India, it soon became apparent that she was unlike the other children.

Kuli’s mother was about 15 years old when she gave birth to her. She was the first-born and many within the community were disappointed that she was not a boy – first-born daughters were often looked upon negatively. But her gender wasn’t the only thing the villagers noticed.

“People thought I was a strange girl, because I was different. Pretty much as soon as I was born, people would tell my mother to get rid of me because nobody would marry a girl like this,” she says.

“No-one knew what the matter with me was. Disabilities were not understood in my village at the time, and nobody knew what cerebral palsy was. People in the village would tell my family that I was a punishment from a previous life,” she says.

“I was too young to remember but my auntie who lived with us told me that my body was like a rag doll.”

A few villagers argued that she should be thrown into the river and left to drown.

“But I was literally saved by my father. He physically had to intervene to stop my body from being taken from our home and discarded like an object,” says Kuli. “He saved my life and stood up for me.”

It wasn’t long before her family decided her future didn’t lie in this village.

The 1970s saw an influx of South Asian migrants to the UK and Kuli’s family joined them. She was two-and-a-half when they arrived in Wolverhampton in 1973, her father finding work as a bus driver.

But Kuli faced prejudice in the UK too. The idea that her condition was a punishment was still held by many of those around her.

“Even here, some parts of the Asian community regard disability with abhorrence. This results in people with disabilities being ignored, used and abused,” she says.

“They struggle to carry out activities able-bodied people do without hesitation – for example, going out, driving and using public transport, going to university, having relationships, finding a life partner and getting married, owning a home, cooking and carrying out daily chores, having children, having hobbies and interests, getting a job.”

The UK-based charity, Asian People’s Disability Alliance, says some of those who believe disability is a punishment for a sin in another life also fear they will be punished for associating with a disabled person. So disabled people may find themselves genuinely ostracised.

Kuli went to a school for children with disabilities and outside its walls she felt singled out.

“Other kids would call me ‘handicapped’ – a word I despise. I’d be stared at and pointed at. Going to the Gurdwara (Sikh temple) was an ordeal. I hated it because people just used to stare at me, making me feel unimportant, alienated and invalid.

She recalls children asking her: “Why do you walk like that and talk like that?”

As she got older, it became harder for Kuli to communicate.

But what she could not express through her speech, she began to express in writing. It was at Penn Hall Special School that Kuli first found poetry.

“The teachers used to read us poetry and I enjoyed listening to it,” she says.

“Then I started to write poetry as a form of relief and a kind of therapy. I enjoyed making words rhyme and writing about my emotions and feelings.”

At 13, she enrolled into a mainstream secondary school. Things started to improve as she mingled with her new classmates. And she continued writing.

“I wrote for pleasure as well as relief,” she says. “I may not have been able-bodied, but I was of able mind. I felt, thought and saw like everybody else. It made me feel powerful.”

School was a safe haven for Kuli, but she feels she underachieved. She failed most of her GCSEs and left school at 16. She was disappointed that she wouldn’t be able to go to university, though her parents had always doubted she would be able to manage alone there anyway.

Now that she had completed school, Kuli’s family attempted to arrange a marriage for her.

“I remember when families would come over to our house to check if I would be suitable for their son,” she says.

“I’d dress up in traditional clothes and sit in our small living room. When the families who came over saw my condition, they would say to my family, ‘You expect our son to marry this?’ And then leave.”

All her life she’d heard people say that no man would want her, and now those hurtful words echoed through her mind.

No-one knew that she poured her feelings on to paper.

She wrote about what life had been like for her, with the idea that maybe one day someone would read it. She wanted people to know what it was like for an Asian woman with cerebral palsy – not seeking sympathy, but empathy.

And then she met the man who would eventually become her husband.

This time, the young man and his family were keen on the marriage. But Kuli wasn’t.

“I didn’t like him at first, I wasn’t very into him,” she says.

“But after time went by and I got to know him, I fell in love with him and he loved me too.”

His acceptance astonished her.

“He is able-bodied and he didn’t have any issues with my disability,” Kuli says. “It wasn’t important to him.”

Determined to find work, Kuli enrolled into a youth training scheme, which led her to a placement at Wolverhampton City Council – a job she has kept for the last 30 years.

A few years ago, now in her 40s, Kuli was a happily married woman, a mother to three children, and working full-time.

She had proved everyone wrong. But life was far from perfect.

Kuli struggled to live up to the expectations placed on an Asian woman.

“I am expected to provide as a mother, a wife, a daughter-in-law and a full-time worker who should give to her family and job her best on a daily basis,” she says. “It is an ordeal as I am not like able-bodied mothers and I cannot do many things that are expected of me like making chapatis, cooking full meals, shopping and carrying out daily chores.

“I cannot plait or tie up my children’s hair. There are many tasks I wish I could accomplish; this lack of independence causes frustration and anger.”

She had always continued writing though, and one day at the city council she met Simon Fletcher, the literature development officer at Wolverhampton libraries.

Kuli revealed to him that she wrote and decided to show him a few bits of poetry and a novel. She thought that as Simon was a writer himself, he would be able to give her valuable advice. After all, he was manager of a small press called Offa’s Press.

Simon was floored by what he read – the emotion, the honesty and pain.

He became Kuli’s mentor, encouraging her to write a collection of work that Offa’s Press could publish. He felt more people needed to hear her story because there would be many other women like her, who were voiceless. He believed she could help them with her poetry and stories.

Kuli agrees that many Punjabi women of her age and generation find it very hard to express how they feel and it has become her goal to empower these women, through writing.

“I know some second-generation Punjabi women living in the UK, like myself, who have desires and dreams, and some women’s dreams have been suppressed through the sacrifice of being dutiful wives, mothers, grandmothers, daughters and daughters-in-law,” she says.

“Writing and Punjabi women is not a very good match. Punjabi women who express a desire in writing and art are thought of as ‘time-wasters’.

“Punjabis often think that we should be doing something more productive with our precious time, like looking after the family and learning to sew and cook, and things like that. I’m a lucky fish, who has escaped the fishing net.”

Kuli set up a Punjabi Women’s Writers Group in Wolverhampton. Meeting once a month in the city’s Central Library, it gives a handful of Punjabi women a safe place to express themselves freely.

Kuli is very protective of who can attend these sessions. She maintains that the women need to feel free of any judgement from family members, something they have dealt with their whole lives.

She tells me that the women write about how they feel and what they see in their community. For example, alcoholic husbands or fathers and domestic abuse – but also the beautiful and funny side of life.

Kuli was gaining a lot of confidence and she felt the time had come to clear one more hurdle.

Getting up on stage to perform her poetry was an idea that would make her stomach churn. But she felt like she had to overcome this, to finally embrace who she is and display herself with confidence.

So in 2017, she gave the first ever live performance of her work, beginning with the words, “I have a dream.”

“I read out loud with a microphone a 15-minute set of poetry in front of an appreciative audience of about 40 people,” says Kuli.

“I spoke as clearly as I could but slipped up a few times. I knew I could have done better. But the audience was very patient and supportive and they welcomed my work with great enthusiasm.

“I understand that for many people it must be alarming to watch a person like me on stage struggling to perform and articulate my words. I know I am not physically normal but my heart, soul and mind are. I know that I will never be a ‘perfect’ performer but with practice and guidance, I know I will grow to be better.”

As Kuli’s confidence grew, so did the group of Punjabi women she guides. The Punjabi Writers Group performed their poetry as a collective in 2019 at The Festival of Imagination in Ironbridge.

At 49, Kuli has come a long way.

“My conclusion is that disability is the problem of the whole of society,” she says. “Our community doesn’t encourage disabled people enough – their personal issues and problems are not taken seriously and are kept hidden. We all have disabilities to an extent. Ignorance of disability is in our roots and this will take many generations to grow out.”

Kuli has summed up her life in her poem, Survivor.

Entered the world like an uninvited guest;

I hid away, embarrassed- I was a disgrace.

Flawed, I survived this sentence. A tough test.

A child who was compared with all the rest,

I was different- an alien from outer space;

entered the world like an uninvited guest.

Benefits, wages kept me together, dressed,

I was a cash point- abused without a case;

flawed, I survived this sentence- a tough test.

On display to men for marriage; suppressed,

I was a British visa for Asian men to chase;

entered the world like an uninvited guest.

A lucky escape, rescued by a husband; blessed

with a family that I could love and embrace.

Flawed, I survived this sentence, a tough test.

My dreams came true and all were impressed,

a valued writer, poet, working mum, a place.

Entered the world like an uninvited guest,

flawed, I survive this sentence – a tough test.

One Comment leave one →
  1. September 1, 2020 12:57 pm

    Reblogged this on Samosas And Chips.

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