Rolling towards progress
Steve A Johnson under a CC Licence
I have always been independently minded, determined to follow the path written for me in life. Sometimes we make mistakes and sometimes we fall over... especially if we have quadriplegic cerebral palsy. Even the language of disability is a political nightmare. Is a disability something you ‘have’, ‘suffer from’ or ‘were born with’? Are you ‘different’, ‘special’ or exactly the same as everyone else? In fact, being a disabled person puts a swift end to these seemingly unending dilemmas. You don’t have time to pontificate over how to put your level of mobility into a verbal expression when you are putting all of your effort into brushing your teeth on your own for the first time, or climbing to the top of Machu Picchu in Peru.
We can’t escape who we are. As a child, however, I wasn’t a ‘disabled person’. I was a goalkeeper playing football in the park with my cousins; I was a Manchester United fanatic. In my mind, there was no reason to believe that I couldn’t become the team’s next first-choice goalkeeper. Kneeling down on the grass and diving from side to side to stop the ball, it never occurred to me that the professional goals might be a bit too high.
My cousin Hamish and I took our passion for the game to new heights. We would write out all the results of an imaginary season of top-class football and then act out each game between the two of us. I always came home with grassy knees and another pair of worn-out tracksuit bottoms. We were born exactly three months apart and cared for in the same incubator of the same south London hospital; him for a three-month premature birth and me for the fact that 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.
No such thing as ‘can’t’
‘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 have never gone to the doctor in relation to my disability. It isn’t an illness and I don’t feel unwell
I met eight-year-old Qasim a few days later, a bundle of energy and confidence bounding towards me, crawling on his knees across the carpet. The story that he began to tell after an extremely brief introduction continued, without a pause for breath, until his dad finally had to drag 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 unaided. Of course, we cannot physically run, or jump, or even jog, but in our minds we are doing all of these things. Qasim knows he has a disability, as he quickly explains during his introduction: ‘Yeah, I’ve got cerebral palsy and sometimes I use an electric wheelchair with a stick that you can push to go like this... do you know what an electric wheelchair is?’
‘Yeah I do, actually I’ve got one myself,’ I reply. ‘It’s in the boot of my car, which is parked outside.’
The thought of driving a car brings another glint to Qasim’s eyes and he looks up at his dad, face full of mischief. A series of car noises and pretend driving manoeuvres ensue.
When you are young, you dream about all the things you can do with your life; but when you have a disability people are eager to tell you what you can’t do. My parents were the first to receive the ‘bad news’ that I would be unlikely to walk, and probably wouldn’t do too well with talking, either. Fortunately, like all great tabloid headlines, it wasn’t 100 per cent true. In fact, I’m sure my mum wouldn’t mind if I talked a bit less. Nevertheless, my parents had received the first of many challenges and a warning: you can’t always accept the status quo or the current norms.
In 1994, disabled children weren’t supposed to go to mainstream schools. My parents disagreed, and fought my corner so that I could do just that. It was the year that Sir Nicholas Scott, Minister for Disabled People in John Major’s Conservative government, used his influence to defeat the Civil Rights (Disabled Personal) Bill at its report stage, through procedural means. The government introduced its own Disability Discrimination Act (DDA) one year later, but only after the public outrage which followed Scott’s blocking manoeuvres.
My mother, my younger brother and I had our own version of the school run every morning. My specially adapted green tricycle was made of heavy steel and wouldn’t fit through the narrow garden gate at the back of our house, so every day my mum had to assemble it outside, before getting me on to the seat and strapping my feet into the pedals. Nevertheless, as my mum tells me now, the thought of simply putting me into a wheelchair didn’t cross her mind. My independence was thus encouraged from an early age.
On another day, I’m holding my dad’s hand as we get on to the bus, struggling to walk in my own way, taking each step with care and keeping my eyes focused on my feet just like he always told me to do. ‘Why don’t you take your time,’ the driver muttered under his breath, thinking that no-one would hear. But my dad did hear him and minutes later he was trying to wrestle with him through the plastic window by the driver seat. I can only guess 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 those prejudices on their own.
The Disability Discrimination Act of 1995 was the first piece of government legislation to outlaw discrimination against disabled people. As I got into my early teens, I memorized the name of this Act to use to ward off supposedly well-intentioned people who approached me in train stations or on the street, demanding to know where my parents were and why I was on my own. I would often plan to ask if they knew about paragraph 6 section 3, even if it was only the title that I actually remembered. However, when it was first introduced, the DDA was limited in scope and the duty to treat disabled people equally was subject to a caveat, termed as ‘reasonableness’. The Act took a definition of disability based on the medical model. I have personal experience of the inadequacy of the approach: my application for a university disability grant was rejected after 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 in relation to my disability. It isn’t an illness and I don’t feel unwell.
In 2013, Turkey officially removed insulting words in reference to people with disabilities, including ‘faulty’, from its laws
The year was not only significant for disabled people living in Britain. In southern Africa, the disability rights movement took a huge stride forward with the election of two women disability leaders to parliament, for the first time in the history of the region. In February, Maria Rantho was sworn in as part of Nelson Mandela’s ANC’s national list of candidates. At the time, six million disabled people formed 12 per cent of South Africa’s population.
‘All along there has not 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 followed in Robert Mugabe’s government in Zimbabwe, as head of the women’s wing of the Zimbabwe Federation of Disabled People. The Global South continued to set the pace for the disabled people’s struggle as the year progressed. The First International Symposium on Issues of Women with Disabilities was convened in Beijing in August, and the first international conference on disability rights was held in December in Havana, Cuba.
When I was studying at secondary school I began to go to the bus stop on my own, where route number 484 so often plagued my morning journeys. For the first few years I would insist on walking from my house (despite the advice from the ‘health and safety’ brigade at my school) carrying a heavy laptop in my bag and dressed in the compulsory shirt, tie and blazer. Sometimes I fell over, but that was something I had adapted to, with the constant array of bruises and bumps a colourful collage on my knees and shins. I would always bounce straight back to my feet, neither fazed nor daunted. On one occasion, though, my bag was weighing me down and I took a little longer than usual to stand up after losing my balance. It was just outside the pizza shop next to my mum’s house, the main road I walked down every morning and an area busy with commuters. The split-second was more than enough of an invitation for me to be swarmed by passers-by, grabbing my arms and ‘helping’ me up. And then I heard a shout from a person, full of distress, clearly a latecomer to the scene.
‘Oh my gosh, what’s happened to his leg!’
‘Don’t worry,’ said another voice, ‘it was like that already.’
The story still brings a smile to my face.
Taking on transport
I would take the bus to school from just across the road from my house, in later years using an electric wheelchair instead of walking. I use the term ‘take the bus’ in a loose way, as I became completely accustomed to waiting as three consecutive buses drove straight past without stopping for me, or riding the whole two-and-a-half-mile journey on my wheelchair instead. Although it became something I expected, no incident felt less infuriating than another. On the occasions that bus drivers did have the courtesy to stop for someone in a wheelchair, the chaos would continue. The automatic wheelchair ramp would be put out, only to get caught on the kerb, stuck and render the entire vehicle immobile. Or the drivers would tell me that the bus was ‘full’; sometimes this wasn’t true, and sometimes it simply meant that a woman with a pram was standing in the space reserved for wheelchair users. They liked to enforce the rules you see stickered around you on buses, but were less keen on adhering to them themselves.
If I began to speak of my experiences on trains and tubes, I could fill many pages. Maybe an overheard conversation between a station worker and police officer as they physically prevented me from boarding a train to Brighton, where I was going to visit my cousins, will suffice. I was a young teenager at the time and not quite as able to articulate the feelings welling inside me as I would be nowadays.
‘We think he has run away from home,’ said the platform manager.
‘Yeah, I see,’ the policeman replied, ‘we are just checking that now.’
Maybe I got my passion for travelling from my mum, who called her parents from war-torn Beirut at the age of 18. Or from my dad, who spent the first years of his life growing up in Nigeria. Different countries progress at varying rates when it comes to disability although, it seems, never quickly enough. The year I was born, 1990, China passed a law for disabled people promising supportive measures to ‘alleviate external barriers and ensure the realization of their rights’, as well as guaranteeing the right to education and to work. The beginning of the new millennium continued to produce changes and progress. In Canada, the Accessibility for Ontarians with Disabilities Act was passed, with a view to making all public establishments completely accessible to those with physical and mental disabilities. Just last year the Supreme Court of India declared that a deaf and mute person needn’t have their disability prevent them standing as a witness. In 2013, Turkey officially removed insulting words and phrases in reference to 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, extending anti-discrimination protection to private clubs, small employers and land transport, even if my own experiences with the latter suggested that something was still amiss. Legislation will not suffice unless attitudes also change and history would suggest that education is essential for that to happen. 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.
Legislation will not suffice unless attitudes also change
When I finished sixth form, most of my friends were choosing between university and working to save money. The only thing on my mind 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 was going to take my independence to a new level. To some friends and family members, even those who had seen me learning to balance, learning to take steps, and then taking leaps into the world outside, going to South America for three months, on my own, seemed like an impossible task.
I was determined, however; evidently more determined than those who didn’t want me to go.
Disabled people have two struggles to deal with: the personal struggle of overcoming obstacles or challenges, but also the battle to convince other people that they are able and have the right to do so.
Machu Picchu ascent
‘You weren’t in a wheelchair in the photograph,’ said Franklin, my Peruvian host in Cuzco, when we met for the first time. In a way it was the kind of reaction I preferred. Rather than the whispered comments and sideways glance so prevalent during my childhood, travelling brought me into contact with people genuinely surprised to see a person with my ‘condition’ – there we go, another term for the subject – so far away from home on their own. I was asked if I was Argentinean, Chilean, even Paraguayan, but no-one would ever guess where I was really from, and my disability undoubtedly played a role in that. It was only a week into my three-month journey that I went to Machu Picchu. Ditching my wheelchair at the bottom of a steep set of stairs leading up to the entrance, I slowly began my ascent up the ancient Mayan ruins. I hadn’t eaten or drunk a thing that day and the beating sun had my t-shirt damp with sweat. Every step took a large amount of effort, but I quickly got into a rhythm and had the summit in mind. It was a feeling of liberation when I got there, the fresh, clean air filling my lungs. I felt the coolness of the breeze and admired the beauty of the mountains, clinging to a small victory in the inner struggle we all live with, ‘disabled’ or not.
This article is from
the November 2013 issue
of New Internationalist.
- Discover unique global perspectives
- Support cutting-edge independent media
- Magazine delivered to your door or inbox
- Digital archive of over 500 issues
- Fund in-depth, high quality journalism