Rolling towards progress

Rolling towards progress

Physical challenges are not nearly as difficult as the fight to show other people that you can succeed, says Jody McIntyre.

I have always felt independent. I need to follow my path in life. Sometimes we make mistakes and sometimes we fall over… especially if we have quadriplegic cerebral palsy. It is even difficult to find the right language to talk about disability. Is a disability something you ‘have’, ‘suffer from’ or ‘were born with’? Are you ‘different’, ‘special’ or exactly the same as everyone else? But if you are a disabled person you don’t have time to think about how to talk about it. You need all your effort to brush your teeth alone for the first time, or climb to the top of Machu Picchu in Peru.

Is it time for a new wheelchair access icon? The Accessible Icon Project suggests a more dynamic version of the International Symbol of Access,(in use since 1969). The BBC says that the new icon started as a piece of ‘guerrilla art’ in Gordon College near Boston, US. Artist Sara Hendron, one person in the project, says the new symbol is ‘a metaphor for self-direction and self determination’. (accessibleicon.org Steve A Johnson under a CC Licence)

We can’t escape who we are. As a child, I wasn’t a ‘disabled person’. I was a goalkeeper playing football in the park with my cousins; I was a Manchester United fan. I thought it was possible for me to be the team’s next first-choice goalkeeper. I played on my knees on the grass and I dived from side to side to stop the ball. I never thought the professional goals might be a bit too high.

My cousin Hamish and I were passionate about football. We wrote out all the results of an imaginary football year and then acted out the games. I always came home with grassy knees and another pair of worn-out trousers. We were born exactly three months apart and were in the same incubator of the same south London hospital; he was born three months early and I stopped breathing when I was born. I died in my mother’s arms and I was brought back to life by something greater than all of us.

‘Can’t’ doesn’t exist

‘Do you want to bring your wheelchair in?’ asks Abdul-Maalik, who works at the An-Noor mosque in Acton, west London. ‘We have lots of people with disabilities who come here, including my son. What is it… cerebral palsy? Yeah he has the same thing…’

I met eight-year-old Qasim a few days later. He was full of energy and confidence crawling towards me on his knees across the carpet. He told me his story until his dad finally had to pull him away.

‘Me and my friend were RUNNING down the street and then he got me like this and I said no way and then I started RUNNING again…’ I listen patiently and I can’t stop smiling at the imagination of a boy who cannot yet stand without help. Of course, we cannot physically run, or jump, but in our minds we are doing all of these things. Qasim knows he has a disability, as he quickly explains in his introduction: ‘Yeah, I’ve got cerebral palsy and sometimes I use an electric wheelchair with a stick that you can push … do you know what an electric wheelchair is?’

‘Yeah I do. I’ve got one myself,’ I reply. ‘It’s in the back of my car outside.’

The thought of driving a car makes Qasim excited and he looks up at his dad, and makes car noises and pretends to drive.

When you are young, you dream about all the things you can do with your life; but when you have a disability people want to tell you what you can’t do. My parents were the first to receive the ‘bad news’ that I would probably never walk, and I probably wouldn’t talk very well. Fortunately, it wasn’t 100 per cent true. I’m sure my mum would be happy if I talked a bit less. But my parents had the first of many challenges and a warning: you can’t always accept everything.

In 1994, disabled children didn’t go to regular schools. My parents disagreed, and fought so that I could go to a regular school. That year, Sir Nicholas Scott, Minister for Disabled People (in John Major’s Conservative government), stopped the early Civil Rights (Disabled Personal) Bill. People fought against this, so the government introduced its own Disability Discrimination Act (DDA) one year later.

Discrimination

I went to school with my mother and my younger brother. I went on my special, steel green tricycle. It was too big to go through the garden gate at the back of our house, so every day my mum had to put it together outside. She put me on to the seat and put my feet into the pedals. She never thought of using a wheelchair. She encouraged me to be independent.

Going to school independently: Jody's mother put this heavy steel tricycle together every morning outside the house so he could get himself to school. She says she never thought of using a wheelchair.

Another day, I was holding my dad’s hand as we got on the bus. It was difficult for me to walk. Each step was slow, looking at my feet just like my dad always told me. ‘Why don’t you take your time,’ the driver said quietly. He thought that no-one would hear. But my dad did hear him and minutes later he was trying to fight him through the plastic window by the driver seat. I think that having a disabled child must bring a mixture of joy at the challenges they overcome, anger at the discrimination of other people, and fear that one day they will have to face the prejudices alone.

The Disability Discrimination Act of 1995 was the first government law to make discrimination against disabled people illegal. As a teenager, I learnt the name of this Act to use to protect myself against the people who came up to me in train stations or on the street saying: ‘Where are your parents? Why are you alone?’ But the DDA was limited at first, and used the word ‘reasonableness’ to how people should treat disabled people equally. The Act defined disability based on the medical model, saying that disability is a problem. I have personal experience of how this did not work: I applied for a university disability grant, but I did not get it because my doctor refused to give a written statement as ‘evidence’. Different people have different ways of doing things but I have never gone to the doctor about my disability. It isn’t an illness and I don’t feel unwell.

The year was important for disabled people living in Britain. And in southern Africa, the disability rights movement developed a lot when two women disability leaders were elected to parliament, for the first time in the history of the area. In February, Maria Rantho was part of Nelson Mandela’s ANC’s national list of candidates. At the time, six million disabled people made up 12 per cent of South Africa’s population.

‘Little has been much said or done to protect the rights of people with disabilities,’ said Maria Rantho, ‘and we needed to be represented by our own people.’ In April, Ronah Moyo entered Robert Mugabe’s government in Zimbabwe, as head of the women’s wing of the Zimbabwe Federation of Disabled People. The Global South led the disabled people’s fight during that year. The First International Symposium on Issues of Women with Disabilities was in Beijing in August, and the first international conference on disability rights was in Havana, Cuba in December.

‘Helping’ hands

When I was at secondary school I began to go to the bus stop alone. Bus number 484 was not easy. For the first few years I walked from my house (the school ‘health and safety’ people told me not to) carrying a heavy laptop in my bag and dressed in the uniform. Sometimes I fell over, but I was used to that. I had a lot of bruises and bumps on my knees and legs. I always jumped up with no problem. But once my bag was very heavy and I took a bit longer than usual to stand up. It was outside the pizza shop next to my mum’s house, the busy road I walked down every morning. In one second, many people fell on me to take my arms and ‘help’ me get up. And then I heard a shout from a worried person, who arrived late.

‘Oh no! What’s happened to his leg!’

‘Don’t worry,’ said another person, ‘it was like that already.’

The story still makes me smile.

Transport

I took the bus to school from across the road from my house. Later, I used an electric wheelchair instead of walking. But often I didn’t ‘take the bus.’ Often three buses drove past without stopping for me. Or I went the whole two-and-a-half-mile journey on my wheelchair instead. I came to expect it, but it made me angry. When the bus drivers stopped for someone in a wheelchair, it was chaos. The automatic wheelchair ramp was put out. It got caught on the edge of the pavement, got stuck and the bus couldn’t move. Or the drivers said the bus was ‘full’; sometimes this wasn’t true, and sometimes it meant that a woman with a pram was in the area for wheelchair users. They liked to talk about the rules, but they didn’t like to follow them. I could talk a lot about my experiences on trains and tubes. But I will just include this conversation I heard between a station worker and police officer as they physically stopped me getting on a train to Brighton (I was going to visit my cousins). I was a young teenager and couldn’t express my feelings as well as now.

‘We think he has run away from home,’ said the station worker.

‘Yeah, OK,’ the policeman replied, ‘we are just checking that now.’

Progress

Maybe I got my passion for travelling from my mum, who went to war-torn Beirut at the age of 18. Or from my dad, who grew up in Nigeria. Different countries progress at different rates but, with disability, never quickly enough. The year I was born, 1990, China passed a law for disabled people. They promised support to ‘reduce barriers and make sure they have rights’, and guaranteed the right to education and to work. There was more progress and changes at the beginning of the new millennium. In Canada, the Accessibility for Ontarians with Disabilities Act was passed. This was to make all public places completely accessible to people with physical and mental disabilities. Last year the Supreme Court of India declared that a deaf and mute person can be a witness. In 2013, Turkey officially took away all the negative words and phrases about people with disabilities, including ‘faulty’, from over 95 of its laws.

More than laws

I was 15 when the DDA Amendment Act was passed in Britain. This gave anti-discrimination protection to private clubs, small employers and land transport, even if my own experiences showed there was a problem with this. Laws are not enough unless attitudes also change. History shows that education is essential for this. The Amendment broadened the definition of disability and introduced a public duty to actively promote equality. It also called for disabled people to be more ‘involved’. But sometimes, we simply have to involve ourselves.

When I finished secondary school, most of my friends were choosing between university and working to save money. The only thing I wanted was to travel and see the world. In 2007, the UN Convention on the Rights of People with Disabilities was opened for signatures. I had been demanding my rights since I started to speak, but now I needed more independence. Some of my friends and family, even those who had seen me learning to balance and learning to walk, thought that going to South America for three months, alone, was impossible.

But I really wanted to go. More than they didn’t want me to go.

Disabled people have two different fights: the personal fight of overcoming problems or challenges, but also the fight to make other people think that they are able and have the right to do so.

Going up to Machu Picchu

‘You weren’t in a wheelchair in the photograph,’ said Franklin, my Peruvian host in Cuzco, when we met for the first time. It was the kind of reaction I liked best. I didn’t like people talking quietly about me and looking at me like when I was a child. When I travelled, I met people who were really surprised to see a person with my ‘condition’ so far away from home and alone. They asked me if I was Argentinean, Chilean, even Paraguayan. But no-one guessed where I was really from, probably because of my disability. A week after I arrived in South America, I went to Machu Picchu. I left my wheelchair at the bottom of steep steps going up to the entrance, I slowly began to climb up to the ancient Mayan ruins. I hadn’t eaten or drunk anything that day and the hot sun made my t-shirt sweaty. Every step took a lot of effort, but I quickly got into a rhythm and only thought of getting to the top. I felt so free when I got there. The fresh, clean air filled my lungs. I felt the cool breeze and looked at the beauty of the mountains. It was one more small victory in the inner struggle we all live with, if we are ‘disabled’ or not.

As this article has been simplified, the words, text structure and quotes may have been changed. For the original, please see: http://newint.org/features/2013/11/01/disability-keynote/