The Importance of Family
The familiar, ever-smiling face of Mamaji (my maternal uncle) appeared on the screen. With his broad shoulders he filled his striped rugby top. His jet black hair and enviably good complexion meant he could have passed for a man 20 years his junior. Mamaji wore a badge reading: “I’m in charge” — it was Fathers’ Day and he promptly qualified with a laugh, “Just for today!”. Mamaji has three daughters so knows what I’m going through raising my two.
I can’t recall Mamaji ever getting angry or raising his voice; he has a calm and measured way of speaking. He’d always be up for a good chat, a sing-song and I have fond memories of days out around Leeds or going swimming with him and my cousins during the school holidays.
For all his positivity and good humour, it was only in my late teens when a comment to a complete stranger suddenly changed my view of him. On the way to our house, Mamaji’s car tyre burst. I drove over to help him. When I arrived he was still sitting in the driver seat while my aunt, grandmother and young cousins were standing on the narrow country road. Roadside assistance had already arrived. As the mechanic was about to start jacking up the side of the vehicle Mamaji leant over and said with a smile “Sorry for not getting out of the car, I’m disabled”.
Born in Dar-Es-Salaam Mamaji was an early bloomer, starting to cruise along furniture by ten months. Naturally my grandmother was thrilled as many children of the same age were still crawling. This excitement would not last. Mamaji fell ill and was taken to a doctor who initially diagnosed a cold. The next day he could not stand. At the age of ten months Mamaji contracted polio and lost the use of both of his legs forever.
In 1965 the political instability in Tanganyika led to Mamaji emigrating with his mother and five siblings to India. His father remained in Africa to continue to run the family business and would send money across.
Admission to school was a challenge. There were prejudices and staff didn’t want to have to look after him. “My dad’s cousin was quite influential. He was a teacher and gave his personal guarantee that I would not let the school down.” School was a struggle. Mamaji would rely on the Rickshaw driver or his siblings to help him up the stairs to his classroom. The toilets were on the ground floor and his classmates would help him down the stairs. Mamaji spent lunch and playtimes alone in a classroom. There were no suitable extra-curricular activities for him and he was not permitted on school trips. There was one school event that he recalls — a singing competition. The stage was about a foot high and Mamaji fell over trying to mount it. No one was there to help. “By this time, walking on my crutches, then having this fall and then feeling embarrassed about falling down, my heart was pumping like anything. When I started singing the words did not come out. When they did come out they were trembling, I made…” Mamaji paused here and rephrased. “I felt that I made a fool of myself that day on the stage. When I related this story to my school friends, they said that ‘we’re so sorry that this happened, we don’t know why we didn’t get up to help you’.” This attitude is slow to change in India.
Mamaji has obviously witnessed this first hand in his youth, but even his friends who have come to realise the error of treating disabled people like this relate incidents from modern day India. To this day many Indians view disability as something to be ashamed of. “I heard from one of my friends that they see this disabled boy. His family places his wheelchair outside in the veranda, and he is sat there all day long. Doing nothing just staring at the street, and there’s no activity for him, no education, nothing. So that is the kind of thing that they do in India, which is quite shocking in a way, but it’s difficult to change the mindset of 1.4 billion people.”
It was only as Mamaji was finishing school that his father joined the family in India. Despite his struggles through school Mamaji wanted to continue with education. “Dad said that he will set up a business in Chandigarh for me, but I insisted on going to university.” Aspiring to be an accountant Mamaji enrolled in a Bachelors of Commerce course in Panjab University, three miles away from their home. His father had a car but Mamaji insisted on commuting himself so his father bought a hand pedalled three wheel cycle.
“In the heat of 40–45 degrees it was a challenge to do three miles of cycling. The classes were not in one room, so I had to move around and I used to lose about 10 minutes at the start of each class.” Despite this hardship at the end of the first year Mamaji ranked amongst the highest scoring students in the year! This led to a remarkable change in the attitude of the university. Mamaji was asked to meet the college principal at the start of the second year. “He called me to say that ‘I want to encourage you to study further so I’ve instructed all the lecturers to have the lectures in one room on the ground floor so you won’t have to move around’. He waived my tuition fee and paid for my books as well. So he was quite supportive in that respect.” Mamaji managed to show the university that he was worth investing in. And their attitude — at least towards him — had changed. “Equal opportunities” is an oft heard phrase in modern times, but five decades ago the differently abled would need to succeed against the odds before being given any help.
Unfortunately circumstances led to the family leaving India just as this support was put in place. Mamaji completed his degree via distance learning, taking his second year exam in the Indian High Commission office in Dar-Es-Salaam. By the time he took his final exam the family had moved to a council flat in Wanstead, London.
When the family arrived in the UK the financial situation was difficult. Whilst he was finishing his studies his parents and sister found work. He desperately wanted a job, “I wanted to help my family with whatever I could earn.”
Alas Mamaji struggled to find work. Back then his B.Com was not recognised on par with a Bachelor’s degree in the UK. To train as a chartered accountant he would need a company to see his potential and be willing to sponsor his training. However in the 1970s discrimination by employers was common. “Even in government departments. As an example, they sent me an interview letter and when I rang to ask what is access like? They said ‘Oh, we didn’t realise you had a disability, sorry, we don’t have access for you.’ So my interview was cancelled.”
Mamaji finally found a job in the finance department of the British Library. Even though he had employment, discrimination existed within the workplace. “Through my working career, I did face a lot of discrimination. Sometimes insensitive comments being made in front of me and it did hurt. A lot of time my promotions were blocked.”
In the 1990s the British Library moved a number of jobs out to Yorkshire. The rural setting, with lower levels of pollution and crime, attracted the family. Despite taking a post as a manager in the accounts office in Leeds Mamaji was still being bullied. Eventually over a decade later Mamaji moved to the DWP and is currently the Head of Finance for his department. “The last 20 years of working life has been alright, but before it was quite a struggle — when I could have progressed quite a lot I didn’t.” The Equality Act, which makes discrimination on the basis of a disability illegal in the UK, only came in as recently as 2010.
A lot of his tenacity and ability to handle the work situation in those early years is attributed to the love and support he received at home. His father had initially been worried that Mamaji would not be able to achieve anything as a disabled boy. After doing some research into how disabled people in western countries coped, Mamaji’s father’s attitude changed and he encouraged his son, “He would give me examples of a lawyer in a wheelchair, who was married.”
Shortly after their arrival in the UK, his father’s plan, in traditional Indian style, was to get the daughters married, then return to Chandigarh with his wife and son. With Mamaji’s degree his father thought he could get a good job in a bank in India. Despite this traditional outlook his father still encouraged Mamaji to be progressive, “My dad was very keen to see me married off. He used to encourage me to go to the pub at lunchtime so I would meet some girls and get married that way. I refused to do that. I felt uneasy about it.”
Given his aversion to going out to meet girls I asked how he met my aunt. He did indeed have an arranged marriage. Through the typical grape-vine (niece of a friend, of a cousin, of an in-law) a girl in India was found and contacted with a dashing photo, some key biographical information and the message that the boy “can’t walk”. When the girl was asked about how she felt about the proposal she said, “I think I’m okay with it, because if this happened after the marriage I wouldn’t have left my husband then, so I’m okay with the proposal.” Mamaji’s wife started working shortly after marriage and within a year they had their first of three wonderful daughters. As their first child grew older, Mamaji’s mother started suffering from the manual work she had to do as a machinist so Mamaji suggested that she retire and enjoy time with her grandchildren. As long as she was able, Mamaji’s mother provided care and support to him and his family.
With the best will and motivation in the world, years of being seen as “lesser than” did leave its mark. “Guests would come home and I would go into the other room and hide myself, even as a married person. I thought that I’m not on par with other people.” The progressive attitude of his wife, the joy of his children and the support of his mother must have changed this as I don’t recall seeing this behaviour in Mamaji over the last thirty years.
I asked if he felt he encountered any untoward challenges raising children. His response was typical of the positive and upbeat attitude that define him. “There were challenges, but there were equally very good times as well. Especially with our first child, on returning from work I’d spend most of my time with her and she was quite comfortable with me. When she would cry because of colic, I used to take her around the block in my manual wheelchair.”. He recalls when they moved from Ilford to a house in a suburb of Leeds his second daughter was furious. “She was very upset with me and would say ‘Papa it’s your fault, I don’t like it here’.” To appease her he got on his crutches and they set off on an adventure to see the kind of rural wildlife that they could not see in Ilford. Before seeing any rabbits, robins or squirrels they came across a dog in a dog coat. “She was so excited she wanted to tell her mum straight away.” That was it, his four year old had been won over. Not in a single story did he complain that his disability stopped him from having fun with his children.
In the last few years Mamaji has had two grandchildren. Like most grandparents he bemoans the fact that he can no longer play with them as he used to play with his kids. But he doesn’t blame his disability or his age. In typical Mamaji style he is laughing as he says: “It could be the increased circumference in my waistline.”
A lifetime of observing his attitude of not blaming his disability for his problems meant I was taken aback to hear Mamaji bluntly state “I’m disabled” to the mechanic on the country road nearly twenty years ago. I’d always seen him in leg braces on crutches or in a wheelchair, but from my point of view he seemed to treat the dependency on these aids to walk as someone who is shortsighted might treat their dependence on glasses to see.
Mamaji summed it up quite nicely. “The environment makes you disabled, you are not disabled. So the environment being the stairs has caused an issue for me, then to address the problem I have a stair lift.” I had never thought about it like this; even my house is adapted for me as an able bodied person. If our house was built with a climbing rope to allow access between separate floors then I would struggle to reach the bedroom under my own power each night. To overcome this we specifically looked for a house with stairs.
I had set out to dive into my Mamaji’s story, wondering if behind this jolly, positive person there was a background of bitterness and negativity. In a reflective comment that could have been made by almost any able-bodied person in their sixties he said “There have been frustrations, there have been disappointments, there have been failures. I’ve been fortunate to be born in the family I was born in. Then later on in married life I kept on getting support from my wife and the girls as well. I would have been in a much worse situation if it wasn’t for that support.” Mamaji clearly doesn’t dwell on his disability or the other challenges and upheavals he has experienced in life; he appreciates the love and support of his family and although he satisfies the dictionary definition of “disabled” he doesn’t let his physical impairment stop him from achieving his goals in life.
