parent opinion

'I'm a mum with a disability. People ask me how I could bring kids into the world.'

The following story is by Neangok Chair, in an interview with Eliza Hull. This story is just one of several from the book "We've Got This: Stories by Disabled Parents", edited by Eliza Hull.

At just two months old, I acquired polio in Khar­toum, in Sudan. I had a vaccination and the person who gave it to me was a student; unfortunately, they accidentally put the needle into the muscle.

The effects of this didn’t show up straight away, but after a couple of days I had a fever and there was excruciating pain in my leg every time my mother tried to move it, so she rushed me straight back to hospital. The medical staff told her I had acquired polio, potentially as a result of the vaccine, and advised that I should use a walking frame to assist me as I learn to walk.

During those early years I struggled to move around, and my gait was uneven. When I was just two years old, medical professionals decided I should have major surgery; unfortunately, they made a mistake, cutting a vein and causing the muscles in my legs to deteriorate.

As a young child I had to use my hands to push my legs and feet to walk. In South Sudan, disability is not really something people feel proud about, but they accept it. My mother is a beautiful, humble person. I am one of eight children, but I am her special girl; she never rejected me or felt ashamed of my disability. Instead, she told me that nothing was wrong with me; she always made me feel included and accepted.

As I grew into a teenager, my disability began to affect my hips, knees and feet. Now my whole right leg is very weak.

In 2001, when I was just fifteen, the Second Sudanese Civil War escalated. I became displaced, but luckily I ended up finding one of my sister’s friends, who told me we would need to leave immediately for Egypt. That trip was hot and hard, with lots of trains and travelling by van. My body ached, but I had no other choice; I didn’t want to be homeless. I needed to stay safe and protect my life. 

When we arrived in Egypt, the United Nations accepted me as a refugee. But some weeks later, my sister’s friend abandoned me. She had met a boyfriend who was able to take her with him to America; she left without telling me.

At this point I had nowhere to go, nowhere to live, so the lady I was sharing a house with took me to the church for help. Luckily this woman had children and needed someone to take care of them. She was such a kind lady and trusted me with her kids. I felt privileged to have that opportunity. Her belief in me as a caregiver enabled me to see that being a parent was a possibility for me as a person with a disability.

Neangok Chair with her daughters. (Image: Supplied)

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I was in Egypt for two years before my sister finally found me. She had been looking for me for years; she was asking around, trying to track me down but hadn’t had any luck. I’ll never forget the day we saw each other again; that was a very happy day; we hugged each other as tears streamed down my face. I was overwhelmed with relief and joy.

We lived in Egypt together for five years, and then in 2006 we applied for refugee status in Australia and were accepted.

My sister had young children, so I was given another chance to look after kids. I was desperate for children of my own; I had always wanted kids, ever since I was a little girl. I always said I wanted to be a mother so that I could give them the love that my mother gave to me. I prayed and prayed that one day I would have children of my own.

At the age of 30, ten years after I arrived in Australia, I fell pregnant with my first daughter. The pregnancy was extremely debilitating, mainly because I had severe morning sickness. I would spend one week in hospital, one week at home. My partner didn’t take care of me, he didn’t support me, I did everything myself. I had to take full responsibility. I am a strong woman, though – I’ve been through a lot and have had to be independent and fend for myself – so I just focused on the safe arrival of my child.

When I was getting close to full term, I struggled physically. I used a crutch to move around and I tried to rest as much as I could. The obstetrician told me that my hips were too small to birth the baby; I think he was scared for me to have a natural birth with my disability, so in the end I had a caesarean. I felt extremely sad, like my body had let me down. I really wanted to have the chance to have a natural birth, but it just wasn’t possible.

In 2016, my beautiful daughter Breeana was born; she was everything I had hoped for and more. The early months were hard, though. I remember trying to carry her with a baby carrier while using my crutches; my body ached with every step. It was exhausting, but I stayed positive because having her so close to me made everything feel worthwhile.

A year later I was pregnant again. I was very lucky to have my sister nearby to help me during the pregnancy, as it was challenging juggling a toddler and being pregnant.

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After the birth of my second child, Billi, my husband and I broke up. Being a single mother has been extremely difficult, especially with a disability, but I have always been a very resilient person and focusing on my girls has kept me going when things have been really tough. At one stage my ex tried to take the children away from me, stating that I wasn’t able to look after them due to my disability; he used it against me. Luckily, DHHS (Department of Health and Human Services) gave me full custody of the children after months of fighting for them.

One stunning family. (Pic: Supplied)

When Billi was just a baby, I would put her in the baby car­rier to walk into town. I would use a crutch under one arm to support myself and then push the pram with Breeana in it with the other arm. It was a juggle! But I always kept a smile on my face because I felt incredibly lucky to have two beautiful girls who I love with all my heart. I felt blessed, so while the pain was heavy, they have made me feel light.

During those early years when the kids were young I faced a lot of discrimination. People were always staring at me, laughing, pointing, and looking me up and down. Sometimes when things got hard physically I asked for help, and sometimes people were rude and said no.

When I was juggling a pram and a baby carrier and my crutches, getting onto public transport was almost impossible, especially when the vehicle wasn’t accessible and the driver wouldn’t help me up. I don’t drive, so it was our only means to get around the city. Often I would ask, ‘I just need a hand to get up.’ But he would scream, ‘No, wait for the next tram.’ Sometimes I wondered: Is it because I am black? Is that why you will not help me and my children onto the tram? I try not to get too depressed; you just have to let it wash over you. If you sink into the discrimination you face for being a black person with a disability, you will be overcome by sadness.

To me, my disability is not something I ought to hide. People are always so curious and stop me on the street to ask what happened to my legs. People often assume I have had an accident because I use crutches. Often people feel sorry for me.

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They say, ‘I’m so sorry that this has happened to you.’ Others ask me questions, especially when I’m walking with my children. ‘Oh, you’ve got two beautiful kids, but what happened to you?’ ‘Do you need help?’ ‘Are you okay?’ ‘How do you look after your kids?’

Sometimes the voices get louder and louder, and more repetitive; it can really affect me. I don’t mind when people are curious and kind, but when people get pushy or make a joke it hurts deeply. 

The most painful question I’ve been asked is: ‘How could you bring kids into the world when you find it hard looking after yourself?’ I wish I had answered by saying they have no idea what I can and can’t do, but I was so shocked that instead I was silent.

I am proud. People may question my ability, but I’m an incredible mother. I give my whole being to my children. I love them, take care of them, do everything for them. Yes, I move through the world differently and more slowly, but my house is full of love.

Sometimes it’s really hard, and I am absolutely exhausted. But when I see my kids smiling and running around calling me Mum, it’s so beautiful. It’s worth it no matter what.

Now as they continue to grow, they’re often asking me questions, especially my younger one, she’s very cheeky. She’s always like, ‘Mummy, can I ask you something?’ I say, ‘Of course.’ She says, ‘Mummy, what happened to your leg?’ And I answer, ‘I had polio when I was a baby.’ I explain it to her, but she doesn’t really understand.

When she grows up, I will explain more of it. While they don’t really understand, they know about my leg and they know that sometimes Mum is tired and in pain. I often turn to God when I’m in pain, because God gives me strength when times are challenging. I thank God that he blessed me with these beautiful children; they’re my angels and for that I am forever thankful.

I hope to be able to teach my children not to judge a person with a disability and to accept people for who they are. I want them to know that we are all the same. It doesn’t matter if we are disabled or if we have a different skin colour. We are all human.

People with a disability are often told that we can’t do things. To any other person with a disability thinking about having a child, I say: just do it. There is nothing that can stop you from having a beautiful family. I have one. Don’t lose hope. Everything is okay: if I can do it, so can you.

Neangok Chair is from South Sudan. She loves to listen to music, clean and cook. She dreams of one day being a doctor to support people with disability. Her main love is her two beautiful children.

This is an extract from We’ve Got This: Stories by Disabled Parents, edited by Eliza Hull, published by Black Inc. and is available where all good books are sold.

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