Hey everyone,
I have been following The Broken of Britain on Twitter for a while now and they have started a campaign against Disability Living Allowance cuts made by the government called "One month before heartbreak". I decided to write a blog post in honour of my one year anniversary of having a chronic illness this month and to help the campaign about what disability means to me.
I have had many experience with disabled people in my life for example I went to school and college with disabled girls and through the church youth group would perform and help out at a disabled group in the YMCA, my step-dad even voluntary drove a disabled mini bus which transported disabled people around. Five years ago disability went from something distant to a very real reality, my nephew was born at twenty-nine weeks and now has cerebral palsy. It was difficult as a family to come to terms with this and even harder for my sister but as a family we bound together to support each other. My sister and us as a family got a lot of help with understanding the needs of my nephew and support from a great group called JOG under the organisation called Portage.
Portage do so much wonderful work not just for the child and their parents but for the family of those affected. They help by giving practical support as well as bringing parents together of disabled children so they have a support network and can socialize with other parents who understand. They also are there to help family members with any questions they have and help them understand the needs of the child as well as helping deal with the emotional distress family can feel. They are a wonderful organization and should have a lot of recognition for the work they do. Including the work of Portage my sister also has the help of Young Careers for her other three children to help them deal with having a sibling who's disabled, as well as helping them deal with the fact that most of their parents time is spent helping their disabled brother and making them still feel special and wanted rather then fading into the background and resenting their brother, they also do some amazing work.
Its not all rosy for my sister, she has been told by our local council (Merton) that she can not have a extension on the back of her house which would have a wet room in it for her son or a stair lift to help him to the toilet or his bedroom. She has also been told that she can not have any adaptations like a lowered sink so he can brush his teeth by himself or even a ramp into her home, the reason for this refusal is that the foundations of her house are sinking and needs under pinning which costs to much money. She has been told that her only option is to move, the problem being is that there is no available housing to suit my nephews needs in Merton so for my sister and my nephew they have to do the best they can till something becomes available, this is causing a lot of strain as my nephew is five now and weighs a lot so by my sister having to pick him up and carrying him up the stairs is causing her back problems, it is also robbing my nephew of independence and a chance of a normal childhood. I also want to bring to your attention that the pavements in Merton are so poor that my nephew has tripped over his walking frame so many times that he has had to have plastic surgery on his chin and has been told that his chin can not take another fall and has made him terrified of using his walking frame which means his chances of walking independently slim.
Despite the fact of having a disabled nephew and interacting with these groups it wasn't a daily issue for me, "disability" was only an issue when I spoke to my sister or see my nephew. I never really knew anything about DLA other then the fact my sister got a payment every month and a car to help transport. I would see my sister dealing with these issues that comes with having a disabled child but it never affected my life other then seeing the fight and distress my sister went through to get the littlest thing for her son. To be honest I thanked my lucky stars that my son decided to stay in the womb rather then being born at thirty weeks when I went into early labour and was born healthy.
In March of 2009 I found out I was eight weeks pregnant which was a huge shock as me and my husband hadn't planned to have a baby, I was working at the time as a Dental nurse and planning on starting a course. In all honestly my employer knew legally he would have to pay me maternity pay but didn't want to so made working impossible for me, so due to the stress I gave up work in April of 2009. The other reason I gave up work is that at three months pregnant I developed burning stinging like pain in my groin which made it nearly impossible to walk, I mentioned this to my midwife who said it was a hormone problem which was causing my pelvic to move which would go as soon as I had my baby, she referred me to pregnancy physiotherapy which I didn't find useful. The physiotherapy was full of women who was quite late in their pregnancy and had problems due to the weight of the baby, I was the earliest pregnancy there.
During my pregnancy the burning stinging pain continued as well as me feeling very tired as well as not being able to sleep and a general feeling of unwell, which both me and my midwife couldn't put down to normal pregnancy symptoms. My labour was relatively easy as a labour goes apart from the fact I had a fever and was throwing up during it, I would just like to point out that I was throwing up before I used the pain relief gas'n'air which can make you sick.
After giving birth to my baby I continued to feel the burning pain in my groin and a feeling of being unwell and tired. I have had Sciatica for six years which in the end prompted me to go to my doctor a year ago this month as I was in extreme amount of pain.
This time last year my life changed dramatically, I have lost most of my mobility and spend most of my time housebound and bed bound. I have had to go through test and four months wait to have a five or ten minute appointment with a neurologist. "Disability" has become a huge part of my daily life which I never thought I would ever have to face. Disability used to mean to me something that happened from birth or a terrible accident now disability means to me hardship.
I had to wait six months to be awarded DLA before that my husband was on JSA and would have to leave me to sign on and was put on courses which meant he was away all day, I needed him at home but as far as the Job centre is concerned if your not looking for a job then you are not for filling your contract and would stop your money, if I was that bad I would be on DLA.
I have a constant battle with people feeling I do not need DLA as I don't have a disability you can see or from birth but if I wasn't entitled then I wouldn't have been awarded it or been told by a health professional I was! I have been refused access on to a bus before! I also live on the second floor flat that hasn't got a lift, the stairs are to much for me to cope with. I'm supposed to be being moved yet that was in June 2010!
I have had my life turned upside down this last year and had to deal with looking at life in a different way. I feel everyday is a learning experience on how the world views disabled people and the daily struggles they go through.
Without DLA my husband wouldn't be able to be at home with me and look after me and my son, I wouldn't be able to afford a wheelchair and the repairs as like I said before Merton pavements are terrible and have broke both front wheels of my wheelchair and to repair them is £50! Without DLA I wouldn't be able to afford to repair it. Without DLA we wouldn't be able to afford the cab fare to and from the hospital or my doctors. DLA is my lifeline in a very hustle world and the government is cutting that lifeline short and fraying the edges.
Disability is a label I never thought I would wear, I live in a constant battle everyday with chronic pain, a lack of mobility and chronic fatigue and still have to attempt to live a "normal" life, without DLA to survive I would have to juggle having a job with my health problems, two kids and run a household.
So if you are reading and see the cuts on DLA don't affect you, stop and think if you or a member of your family got sick or had a heart attack or stoke then you or them will rely on DLA. Think about it, it is your fight too.
Thank you for reading xxx
I have been following The Broken of Britain on Twitter for a while now and they have started a campaign against Disability Living Allowance cuts made by the government called "One month before heartbreak". I decided to write a blog post in honour of my one year anniversary of having a chronic illness this month and to help the campaign about what disability means to me.
I have had many experience with disabled people in my life for example I went to school and college with disabled girls and through the church youth group would perform and help out at a disabled group in the YMCA, my step-dad even voluntary drove a disabled mini bus which transported disabled people around. Five years ago disability went from something distant to a very real reality, my nephew was born at twenty-nine weeks and now has cerebral palsy. It was difficult as a family to come to terms with this and even harder for my sister but as a family we bound together to support each other. My sister and us as a family got a lot of help with understanding the needs of my nephew and support from a great group called JOG under the organisation called Portage.
Portage do so much wonderful work not just for the child and their parents but for the family of those affected. They help by giving practical support as well as bringing parents together of disabled children so they have a support network and can socialize with other parents who understand. They also are there to help family members with any questions they have and help them understand the needs of the child as well as helping deal with the emotional distress family can feel. They are a wonderful organization and should have a lot of recognition for the work they do. Including the work of Portage my sister also has the help of Young Careers for her other three children to help them deal with having a sibling who's disabled, as well as helping them deal with the fact that most of their parents time is spent helping their disabled brother and making them still feel special and wanted rather then fading into the background and resenting their brother, they also do some amazing work.
Its not all rosy for my sister, she has been told by our local council (Merton) that she can not have a extension on the back of her house which would have a wet room in it for her son or a stair lift to help him to the toilet or his bedroom. She has also been told that she can not have any adaptations like a lowered sink so he can brush his teeth by himself or even a ramp into her home, the reason for this refusal is that the foundations of her house are sinking and needs under pinning which costs to much money. She has been told that her only option is to move, the problem being is that there is no available housing to suit my nephews needs in Merton so for my sister and my nephew they have to do the best they can till something becomes available, this is causing a lot of strain as my nephew is five now and weighs a lot so by my sister having to pick him up and carrying him up the stairs is causing her back problems, it is also robbing my nephew of independence and a chance of a normal childhood. I also want to bring to your attention that the pavements in Merton are so poor that my nephew has tripped over his walking frame so many times that he has had to have plastic surgery on his chin and has been told that his chin can not take another fall and has made him terrified of using his walking frame which means his chances of walking independently slim.
Despite the fact of having a disabled nephew and interacting with these groups it wasn't a daily issue for me, "disability" was only an issue when I spoke to my sister or see my nephew. I never really knew anything about DLA other then the fact my sister got a payment every month and a car to help transport. I would see my sister dealing with these issues that comes with having a disabled child but it never affected my life other then seeing the fight and distress my sister went through to get the littlest thing for her son. To be honest I thanked my lucky stars that my son decided to stay in the womb rather then being born at thirty weeks when I went into early labour and was born healthy.
In March of 2009 I found out I was eight weeks pregnant which was a huge shock as me and my husband hadn't planned to have a baby, I was working at the time as a Dental nurse and planning on starting a course. In all honestly my employer knew legally he would have to pay me maternity pay but didn't want to so made working impossible for me, so due to the stress I gave up work in April of 2009. The other reason I gave up work is that at three months pregnant I developed burning stinging like pain in my groin which made it nearly impossible to walk, I mentioned this to my midwife who said it was a hormone problem which was causing my pelvic to move which would go as soon as I had my baby, she referred me to pregnancy physiotherapy which I didn't find useful. The physiotherapy was full of women who was quite late in their pregnancy and had problems due to the weight of the baby, I was the earliest pregnancy there.
During my pregnancy the burning stinging pain continued as well as me feeling very tired as well as not being able to sleep and a general feeling of unwell, which both me and my midwife couldn't put down to normal pregnancy symptoms. My labour was relatively easy as a labour goes apart from the fact I had a fever and was throwing up during it, I would just like to point out that I was throwing up before I used the pain relief gas'n'air which can make you sick.
After giving birth to my baby I continued to feel the burning pain in my groin and a feeling of being unwell and tired. I have had Sciatica for six years which in the end prompted me to go to my doctor a year ago this month as I was in extreme amount of pain.
This time last year my life changed dramatically, I have lost most of my mobility and spend most of my time housebound and bed bound. I have had to go through test and four months wait to have a five or ten minute appointment with a neurologist. "Disability" has become a huge part of my daily life which I never thought I would ever have to face. Disability used to mean to me something that happened from birth or a terrible accident now disability means to me hardship.
I had to wait six months to be awarded DLA before that my husband was on JSA and would have to leave me to sign on and was put on courses which meant he was away all day, I needed him at home but as far as the Job centre is concerned if your not looking for a job then you are not for filling your contract and would stop your money, if I was that bad I would be on DLA.
I have a constant battle with people feeling I do not need DLA as I don't have a disability you can see or from birth but if I wasn't entitled then I wouldn't have been awarded it or been told by a health professional I was! I have been refused access on to a bus before! I also live on the second floor flat that hasn't got a lift, the stairs are to much for me to cope with. I'm supposed to be being moved yet that was in June 2010!
I have had my life turned upside down this last year and had to deal with looking at life in a different way. I feel everyday is a learning experience on how the world views disabled people and the daily struggles they go through.
Without DLA my husband wouldn't be able to be at home with me and look after me and my son, I wouldn't be able to afford a wheelchair and the repairs as like I said before Merton pavements are terrible and have broke both front wheels of my wheelchair and to repair them is £50! Without DLA I wouldn't be able to afford to repair it. Without DLA we wouldn't be able to afford the cab fare to and from the hospital or my doctors. DLA is my lifeline in a very hustle world and the government is cutting that lifeline short and fraying the edges.
Disability is a label I never thought I would wear, I live in a constant battle everyday with chronic pain, a lack of mobility and chronic fatigue and still have to attempt to live a "normal" life, without DLA to survive I would have to juggle having a job with my health problems, two kids and run a household.
So if you are reading and see the cuts on DLA don't affect you, stop and think if you or a member of your family got sick or had a heart attack or stoke then you or them will rely on DLA. Think about it, it is your fight too.
Thank you for reading xxx
Originally published here
Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011
Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011
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