I am forty. I am different and am on a wheelchair. However, like my non-disabled peers I want to do the same things as they are doing. However, at each stage I encounter barriers. So, whether going to the theatre on one’s own…or travelling by bus or train, or going to a museum or exhibition…embarking into a Master’s program, or going to Paris alone with friends...just living life…. Getting into the bus, or going to the chemist to buy some personal necesserties the most ordinary events in your life…ones you take for granted….becomes a challenge. Besides being on a wheelchair, I have problems of communication. I have cerebral palsy and a speech impairment…..my speech is slow and disarthric (a term used for people with speech difficulties who have slow way of speaking. When words come out of my mouth, it sounds monotonous and infantile. I cannot help it.
Yes I do get frustrated about not being able to communicate fast like an ordinary person.
I don’t like to dwell on the things which I can’t do as it is too painful and brings tears to my eyes. I used to keep my sadnesses hidden away in cold storage, in life’s remote database. That’s what my mother did for me. She always made everything around us fun and beautiful, as if nothing sad existed. She took the sadnesses and pain and hid it from us instead she made life beautiful.
But I recently figured out that if I keep it all trapped up within me, nobody will know the suffering and the deep-rooted pain that I can experience. I am reminded of the film ‘ Life is Beautiful’…….in that film, Bemini is in Auscharity concentration camp with his sons of 7 or 8 years…he conceals the norms and reality of life from him and keeps telling him that life is fun….life is beautiful and makes up stories which the young boy believes implicitly.
For me, I found out in my late teens that life was not beautiful. Life was hard. Being disabled is not easy to live in a society where one is outnumbered by able-bodied people who can talk and walk perfectly. I could not walk or talk like my non-disabled peers. It was only when I went to St.Xaviers that I figured out that Life was not Beautiful anymore. Life was not rosy anymore. It was excrutiatingly painful. It was in college I went through deep depression about my disability. I noticed the acute difference that I was different when I first interacted and was with hordes of normal people who could walk and talk without batting an eyelid.
I was in tears a great deal when I came home everyday from college. Nobody knew except my mother. I did not like to verbalise my pain and my sorrow so I keep it in the cold storage. My mother’s inability to verbalise what was painful and real had a spill over on us and we never really did analyse our griefs and sorrows. This doesn’t mean I don’t feel that kind of pain. Most people can’t handle pain and suffering. They only want to know about the good times that disabled have because there is dearth of positive images of disabled people leading ordinary lives, like doing higher studies, or getting and keeping a job and leading a normal life, therefore the painful elements of disability get left aside. I feel the painful elements should be addressed.
There are a lot of painful parts in my life which I myself don’t like to think about. When people first see me their first impression is they see me as a helpless being My inner pain of constantly being viewed as disabled, and as a child. I feel disability is still entwined with children. Sometimes I wish people would see me as a person first then look my disability. Society views disabled people as dependent beings, unable to contribute to life. Why? Just because disabled people need extra help. Special schools don’t prepare disabled children for adulthood
My pain also stems from the inability of doing the normal adult things and indulge in some of the adult pleasures. Of course the nuclear society that I live in always challenges me and pressurises to do more. Some of
Of course, one tends to put pain hidden under the carpet, tucked away to be opened on a rainy day. I tend to argue with this theory. I feel I would like to expose my pain. I have needs too as an adult which are not met. As a result I don’t develop to my full potential.
As a child I was not exposed to all the sorrows of being disabled. I am forty and been exposed to the joys and the sorrows of life. My deepest sorrow is that my speech isn’t like the ordinary person. So I cannot have a conversation with a stranger.
I want to write a short book based on my current experiences. My concept for this book is a short one of my life as an adult. It will begin with my returning to London in persuit of a job. I didn’t get a job but I got myself more empowered.
My empowerment began with two things, my movement and my communication as I cannot walk as normal people do so I use an electric wheelchair to cover huge distances and the second is I have poor speech and use a variety of communication tools such as my lightwriter, the email and mobile. Who would have thought that a mobile would have serve as an excellent communication tool.
The book is about when we returned to London in 1993 as my mother was invited by the London school of Economics as an academic visitor in 1993.
My connection with London goes back when I was one, I was diagnosed as it was the era of the medical model. My IQ proved to be 120! I was eligible to go to a special school in Cheyne Walk. Since then I have been in and out of London. London has a comforting and embracing nature towards as a disabled person. I feel the city welcomes one with open arms, It is a very enviriogating city.
We have not moved too far from Cheyne Walk as our tiny flat in Pimlico overlooking the river Thames and Battersea Powerstation which is a horrific building I go for my walks to pay homage to my old almarta. Near the school there’s a statue of Sir Thomas Moore which makes me feel even more ancient!! And makes the place very historic.
Although we brought a flat in 1981 when I was in boarding school in Kent and I used to come during the weekends, we stayed in different places as our flat was rented out and also it was extremely far from where we needed to be.
Ever since I was one we have been in and out of England as India did know very much about my disability.
Since 1993 London became our second home. I accompanied her I and my Carer at that time, Maya was there with her. Yes, I did have a carer who helped me with my basic needs.
Most people feel that I am safe and protected in a nice little ivory tower where disabled people are only meant to socialise and interact with their carers. I didn’t have a carer until I was 23. All my physical help was done by my mother and family. This they did with ease, without ever making me feel they have done anything for me. Although having a full time carer meant that I was independent, but
During our time in London in 1993 I got rid of the myth that I needed someone full time with me. The book will begin with our London stint as I feel it was only there I became an adult.
A year later mother was embanked on a Ph.D. she read a great deal on how empowered disabled people got in the West. There was a new kind of shift away from the traditional charity framework to a rights model. Funnily enough we went to disability conference at the Institute of Education where there were disabled people advocating for their own rights. This impressed me tremendously and I too wanted a voice of my own.
The first move was to bring my electric wheelchair from India and to get a communication aid which I was reluctant to do as I felt as if I was too disabled. What I didn’t realise was that with a communicator I could communicate with a total stranger. Electric wheelchair. I could go around on my electric wheelchair accompanied by friends and family, The feeling was eurphoric to be able to move around in Space
With my electric wheelchair I became mobile on the streets of London. For the first few weeks it was like a shock- a new kind of freedom. Initially I had to be accompanied by my attendant Maya or my mother. Soon I mastered crossing of the roads by myself with Maya following me way behind. The speed of the electric wheelchair was faster then the pace of someone footstep. I found that it was getting very restricting. I felt confident that I could wheel along by myself. So one morning while I was having my morning tea, I casusally said to my mother
‘Can I come and pick u up.’
‘Can I come on my own Without Maya, to pick u up at the Institute of Education.’ SAID I matter of factly Maya. That day Mother was studying at the Institute of Education and we were living in a two bedroom flat in Devonshire Street, ‘What, its too dangerous?’ snapped mum, as she finished her tea and was going to get ready ‘please’ I pleaded with her. I lay about in bed daydreaming about my then boyfriend. With my boyfriends it is always a platonic relationship. I don’t know perhaps they don’t find me sexual attractive or think I am asexual But it was fun being with the opposite sex.
‘Ok ‘ She said ‘You can come and pick me up. I was estastic, but didn’t show it because of fear of not being allowed.
We were living off Tottenham Court Road, A flat in Devonshire street. Maya dropped me outside Budgens
She said goodbye reluctantl. I was eurphoric as I wheeled down Gower streets and onto Dillions, what is now known as Waterstones, then Malet street, through the weeping Willow trees of Woburn square and then to the
Institute of Education’s library, not knowing that this library was going to be my future bastile
I zoomed in and Anne Peters opened. I was so pleased that I had made it.
I went and found mother who was delighted to see me and put a bag full of books on my chair.
Movement on my own without being told where and how to go was eurphoric. For the first time I felt free of humanity. Inside me, I was jumping with joy. I wanted to scream and shirek with extreme happiness.
From then on I went everywhere on my own to Bookshops, supermarket Cinema halls arts galleries.
That’s was first move to my independence and empowerment. I will regale with some of my experiences while going around London Roads on my own.
People and friends want hear my voice and what I want to say instead of me being someone who was voiceless. I got a communicator which initially I was dead against. I thought if I have a communicator I would look more disabled but I realised that with a communicator I was no longer a passive individual. My parents had friends who wanted to know what I was thinking. Having been in London I will begin with my experiences in London as I think I became a person with a personality of my own, with a voice of my own.
For seven years I lived in Woburn Square in students accommodation. First we given the flat in Woburn Square as mother was doing her Phd from the Institute of Education is in the heart of London where one can walk everywhere .Woburn Square was first allotted to Mother as she was a phd student Then I Enrolled in a Masters in Womren’s Studies MORE
Holloway
It took me a while getting used to the buses. For the first few months I always had friends or Mum and Sathi or my two flatmates Gulab and Varsha accompany me. I felt frustrated that I had someone with me as much as I like to be with them. I could never meet anyone spontaneously and this sadden me a lot. Friends and family were very overprotected and were always ready to pick and drop me. But they had their own lives too. After all I had mastered crossing the busy roads of central London. Why I had the freedom of crossing the roads, why couldn’t I go in and out of buses by myself.
So one day I took the plunge and went by bus on my own. ‘no you can’t I think of a way of picking you up.’ Said Susan who worked in Russell square. I had classes in Ladbroke Grove. Actually I learnt from my flatmate Gulab how to hop and off buses. For someone who has never had travel by buses, it was quite an experience/
‘I meet you at the IOE Bar at 5.45 ‘I wrote in my email.
‘Is someone with you,’ she wrote within five minutes. Susan and I communicate like this when she has access to email.
‘Yes’, I lied
Classes at Ladbroke grove had finished by 1. I did not want to hang around. What was stopping me- nothing except people’s attitudes. Actually close friends and family were worried about my safety.
I carefully got on to the ramp on the number 4 bus which took me to Holloway road. I was eurphoric. I changed to 91 which drop to Travistrock square.
I got off near travistock Square after taking three buses, I texted Susan, Lets meet. My friend Susan was surprised and was looking for me everywhere for me until she heard my voice. I was talking to my friend Judy who just happened to be walking past at that very moment. She was amazed to see me. Then we walked to the Institute’s bar and had our usual quota of wine.
In the beginning, my friends and family were shocked but the more I showed them how I carefully got onto the ramp and in the bus
These experiences cuts out disability
Yes I do get frustrated about not being able to communicate fast like an ordinary person.
I don’t like to dwell on the things which I can’t do as it is too painful and brings tears to my eyes. I used to keep my sadnesses hidden away in cold storage, in life’s remote database. That’s what my mother did for me. She always made everything around us fun and beautiful, as if nothing sad existed. She took the sadnesses and pain and hid it from us instead she made life beautiful.
But I recently figured out that if I keep it all trapped up within me, nobody will know the suffering and the deep-rooted pain that I can experience. I am reminded of the film ‘ Life is Beautiful’…….in that film, Bemini is in Auscharity concentration camp with his sons of 7 or 8 years…he conceals the norms and reality of life from him and keeps telling him that life is fun….life is beautiful and makes up stories which the young boy believes implicitly.
For me, I found out in my late teens that life was not beautiful. Life was hard. Being disabled is not easy to live in a society where one is outnumbered by able-bodied people who can talk and walk perfectly. I could not walk or talk like my non-disabled peers. It was only when I went to St.Xaviers that I figured out that Life was not Beautiful anymore. Life was not rosy anymore. It was excrutiatingly painful. It was in college I went through deep depression about my disability. I noticed the acute difference that I was different when I first interacted and was with hordes of normal people who could walk and talk without batting an eyelid.
I was in tears a great deal when I came home everyday from college. Nobody knew except my mother. I did not like to verbalise my pain and my sorrow so I keep it in the cold storage. My mother’s inability to verbalise what was painful and real had a spill over on us and we never really did analyse our griefs and sorrows. This doesn’t mean I don’t feel that kind of pain. Most people can’t handle pain and suffering. They only want to know about the good times that disabled have because there is dearth of positive images of disabled people leading ordinary lives, like doing higher studies, or getting and keeping a job and leading a normal life, therefore the painful elements of disability get left aside. I feel the painful elements should be addressed.
There are a lot of painful parts in my life which I myself don’t like to think about. When people first see me their first impression is they see me as a helpless being My inner pain of constantly being viewed as disabled, and as a child. I feel disability is still entwined with children. Sometimes I wish people would see me as a person first then look my disability. Society views disabled people as dependent beings, unable to contribute to life. Why? Just because disabled people need extra help. Special schools don’t prepare disabled children for adulthood
My pain also stems from the inability of doing the normal adult things and indulge in some of the adult pleasures. Of course the nuclear society that I live in always challenges me and pressurises to do more. Some of
Of course, one tends to put pain hidden under the carpet, tucked away to be opened on a rainy day. I tend to argue with this theory. I feel I would like to expose my pain. I have needs too as an adult which are not met. As a result I don’t develop to my full potential.
As a child I was not exposed to all the sorrows of being disabled. I am forty and been exposed to the joys and the sorrows of life. My deepest sorrow is that my speech isn’t like the ordinary person. So I cannot have a conversation with a stranger.
I want to write a short book based on my current experiences. My concept for this book is a short one of my life as an adult. It will begin with my returning to London in persuit of a job. I didn’t get a job but I got myself more empowered.
My empowerment began with two things, my movement and my communication as I cannot walk as normal people do so I use an electric wheelchair to cover huge distances and the second is I have poor speech and use a variety of communication tools such as my lightwriter, the email and mobile. Who would have thought that a mobile would have serve as an excellent communication tool.
The book is about when we returned to London in 1993 as my mother was invited by the London school of Economics as an academic visitor in 1993.
My connection with London goes back when I was one, I was diagnosed as it was the era of the medical model. My IQ proved to be 120! I was eligible to go to a special school in Cheyne Walk. Since then I have been in and out of London. London has a comforting and embracing nature towards as a disabled person. I feel the city welcomes one with open arms, It is a very enviriogating city.
We have not moved too far from Cheyne Walk as our tiny flat in Pimlico overlooking the river Thames and Battersea Powerstation which is a horrific building I go for my walks to pay homage to my old almarta. Near the school there’s a statue of Sir Thomas Moore which makes me feel even more ancient!! And makes the place very historic.
Although we brought a flat in 1981 when I was in boarding school in Kent and I used to come during the weekends, we stayed in different places as our flat was rented out and also it was extremely far from where we needed to be.
Ever since I was one we have been in and out of England as India did know very much about my disability.
Since 1993 London became our second home. I accompanied her I and my Carer at that time, Maya was there with her. Yes, I did have a carer who helped me with my basic needs.
Most people feel that I am safe and protected in a nice little ivory tower where disabled people are only meant to socialise and interact with their carers. I didn’t have a carer until I was 23. All my physical help was done by my mother and family. This they did with ease, without ever making me feel they have done anything for me. Although having a full time carer meant that I was independent, but
During our time in London in 1993 I got rid of the myth that I needed someone full time with me. The book will begin with our London stint as I feel it was only there I became an adult.
A year later mother was embanked on a Ph.D. she read a great deal on how empowered disabled people got in the West. There was a new kind of shift away from the traditional charity framework to a rights model. Funnily enough we went to disability conference at the Institute of Education where there were disabled people advocating for their own rights. This impressed me tremendously and I too wanted a voice of my own.
The first move was to bring my electric wheelchair from India and to get a communication aid which I was reluctant to do as I felt as if I was too disabled. What I didn’t realise was that with a communicator I could communicate with a total stranger. Electric wheelchair. I could go around on my electric wheelchair accompanied by friends and family, The feeling was eurphoric to be able to move around in Space
With my electric wheelchair I became mobile on the streets of London. For the first few weeks it was like a shock- a new kind of freedom. Initially I had to be accompanied by my attendant Maya or my mother. Soon I mastered crossing of the roads by myself with Maya following me way behind. The speed of the electric wheelchair was faster then the pace of someone footstep. I found that it was getting very restricting. I felt confident that I could wheel along by myself. So one morning while I was having my morning tea, I casusally said to my mother
‘Can I come and pick u up.’
‘Can I come on my own Without Maya, to pick u up at the Institute of Education.’ SAID I matter of factly Maya. That day Mother was studying at the Institute of Education and we were living in a two bedroom flat in Devonshire Street, ‘What, its too dangerous?’ snapped mum, as she finished her tea and was going to get ready ‘please’ I pleaded with her. I lay about in bed daydreaming about my then boyfriend. With my boyfriends it is always a platonic relationship. I don’t know perhaps they don’t find me sexual attractive or think I am asexual But it was fun being with the opposite sex.
‘Ok ‘ She said ‘You can come and pick me up. I was estastic, but didn’t show it because of fear of not being allowed.
We were living off Tottenham Court Road, A flat in Devonshire street. Maya dropped me outside Budgens
She said goodbye reluctantl. I was eurphoric as I wheeled down Gower streets and onto Dillions, what is now known as Waterstones, then Malet street, through the weeping Willow trees of Woburn square and then to the
Institute of Education’s library, not knowing that this library was going to be my future bastile
I zoomed in and Anne Peters opened. I was so pleased that I had made it.
I went and found mother who was delighted to see me and put a bag full of books on my chair.
Movement on my own without being told where and how to go was eurphoric. For the first time I felt free of humanity. Inside me, I was jumping with joy. I wanted to scream and shirek with extreme happiness.
From then on I went everywhere on my own to Bookshops, supermarket Cinema halls arts galleries.
That’s was first move to my independence and empowerment. I will regale with some of my experiences while going around London Roads on my own.
People and friends want hear my voice and what I want to say instead of me being someone who was voiceless. I got a communicator which initially I was dead against. I thought if I have a communicator I would look more disabled but I realised that with a communicator I was no longer a passive individual. My parents had friends who wanted to know what I was thinking. Having been in London I will begin with my experiences in London as I think I became a person with a personality of my own, with a voice of my own.
For seven years I lived in Woburn Square in students accommodation. First we given the flat in Woburn Square as mother was doing her Phd from the Institute of Education is in the heart of London where one can walk everywhere .Woburn Square was first allotted to Mother as she was a phd student Then I Enrolled in a Masters in Womren’s Studies MORE
Holloway
It took me a while getting used to the buses. For the first few months I always had friends or Mum and Sathi or my two flatmates Gulab and Varsha accompany me. I felt frustrated that I had someone with me as much as I like to be with them. I could never meet anyone spontaneously and this sadden me a lot. Friends and family were very overprotected and were always ready to pick and drop me. But they had their own lives too. After all I had mastered crossing the busy roads of central London. Why I had the freedom of crossing the roads, why couldn’t I go in and out of buses by myself.
So one day I took the plunge and went by bus on my own. ‘no you can’t I think of a way of picking you up.’ Said Susan who worked in Russell square. I had classes in Ladbroke Grove. Actually I learnt from my flatmate Gulab how to hop and off buses. For someone who has never had travel by buses, it was quite an experience/
‘I meet you at the IOE Bar at 5.45 ‘I wrote in my email.
‘Is someone with you,’ she wrote within five minutes. Susan and I communicate like this when she has access to email.
‘Yes’, I lied
Classes at Ladbroke grove had finished by 1. I did not want to hang around. What was stopping me- nothing except people’s attitudes. Actually close friends and family were worried about my safety.
I carefully got on to the ramp on the number 4 bus which took me to Holloway road. I was eurphoric. I changed to 91 which drop to Travistrock square.
I got off near travistock Square after taking three buses, I texted Susan, Lets meet. My friend Susan was surprised and was looking for me everywhere for me until she heard my voice. I was talking to my friend Judy who just happened to be walking past at that very moment. She was amazed to see me. Then we walked to the Institute’s bar and had our usual quota of wine.
In the beginning, my friends and family were shocked but the more I showed them how I carefully got onto the ramp and in the bus
These experiences cuts out disability
