I am disabled. I now have a new label to waft around. I am 'pregnant'. As any new Mum, I feel like I need a bit of help and advice, so I thought I would turn to amazon and find one of those nice fluffy mummy books about my situation. However, this was not to be.
So, in my curiosity I did a search on amazon. I typed in "disability" and "pregnancy". The first book looked promising, but then when I looked at it, the book was about what midwives might encounter with a disabled mother, and not just the "simple" stuff. By book number three amazon had moved on to disabled children and not disabled mothers. (although book 2 looks interesting its more of a story book than a fact based book).
I don't think such a book exists. It doesn't seem to be the norm to be disabled and pregnant (disabled people have sex?) Certainly my midwife seemed a bit stumped, but all credit to her I am being "properly" assessed for my needs whilst pregnant and when I have baby. I don't know how someone can look into a crystal ball but I am waiting to see on this one.
I have already found this to be a fascinating journey, and I am only a few weeks into it comparatively. My first observation was at my midwife appointment. Although things were geared to what I can do, inevitably there had to be some focus on what I can't do so that it can be ascertained what help I "might" need. Although I am used to this negativity when it comes to forms such as DLA it struck me that unlike other newly expectant mothers, my status was already being called into question, albeit in a 'supportive' disguise.
I then started to look at birth options. And then I stopped. Apparently, there is a normal way to give birth, and then by definition, an abnormal one. I will not let anyone else tell me what is normal and abnormal when it comes to my birth decisions. I will not be made to feel like a freak if for reasons of impairment I can not 'achieve' a normal birth. I am really quite angry about the language surrounding this. It has made me fearful of talking to midwives and other professionals when all the NHS guidelines frame a 'natural' birth as 'normal'. I have been forced to find other, more neutral information so I can make an informed decision about what I need to do to give birth in my situation. This is going to be another interesting thing to see how it pans out.
I then have a side observation. My DLA renewal forms don't ask if I am pregnant, all the other benefit forms I have filled in do. When ringing the DWP the person had clearly never been asked this before but couldn't quite answer the question because, well obviously pregnancy and birth is going to change things, but nothing i can predict.
So, yes, I am, pregnant. And I am disabled. As you can see from above, the way I like to cope with interesting (read difficult) situations is to analyse and academicise them. It gives me some distance, and hopefully provides some more interest to whats happening.
Thursday, 31 October 2013
Sunday, 13 October 2013
on being horizontal...
I have spent the last few days umming and ahhing as to whether to write this blog. It puts me in a vulnerable position and reveals a lot about me and my own life. But, after consideration I felt I should write it in honour of all those who spend their days horizontal..
I first heard about people who lived their lives from a horizontal position during spartacus, out of which the term from bed activism was born. Liz Crow then took this further with her 'bedding out' activism. I have always been a very private disabled person and didn't feel able to join in with sharing me with the world. However, my recent experiences have compelled me into writing a snippet of my life.
I have spent the last three weeks in bed. horizontal and unable to function. Although this is/was a temporary position for me it has given me a great deal of respect and admiration for those who have to do this day in day out with no prospect of recovery like I have.
Having to rely on someone else to get me food, drink, entertainment, well everything and anything has taught me a lot of resilience. I am stubbornly independent and the orders that I keep giving out to people still feel like begging and forcing me to reduce myself to a lesser being somehow. To be completely dependent on someone else is, at times degrading and always difficult. I am just grateful to my husband that he has accepted the role of carer/ servant with such good grace. It makes it easier to bear somehow.
I dont pretend to know what it could be like to do this on a more permanent basis, but I have a much greater respect for those who do now. The term 'from bed activism' was just that, a term. Only now can I somewhat appreciate the sacrifice people are making to get involved and to keep fighting the government and welfare reform whilst being unable to function themselves. Thank you.
These last few weeks have been isolating. I can't even get on to twitter for some reason that this laptop wont divulge (again my husband has swapped to my desktop so i can have his). I have been scared to reveal how bad things are to my friends for fear of sympathy, and on the rare day or 2 that I make it.. outside I want to enjoy it and not spend the time talking about not being well. lack of understanding and fear of being labelled has left me dealing with this on my own, again though I do have my husband.
I spend my days refreshing facebook, messageboards, emails, anything and everything to make me feel like I have some sort of connection to real people, the real world. I have watched every online tv show I can find to watch. I am thoroughly bored and probably a bit depressed.
But I guess thats why I am writing this. To remind myself that this is temporary, and I will get better. I hope that this doesn't come across wrong, that I am somehow 'rubbing others noses in it', but that I should be grateful that it is temporary and that I admire and deeply respect those for whom this is more permanent. I have never truely appreciated your activism and spirit until now. thank you.
I first heard about people who lived their lives from a horizontal position during spartacus, out of which the term from bed activism was born. Liz Crow then took this further with her 'bedding out' activism. I have always been a very private disabled person and didn't feel able to join in with sharing me with the world. However, my recent experiences have compelled me into writing a snippet of my life.
I have spent the last three weeks in bed. horizontal and unable to function. Although this is/was a temporary position for me it has given me a great deal of respect and admiration for those who have to do this day in day out with no prospect of recovery like I have.
Having to rely on someone else to get me food, drink, entertainment, well everything and anything has taught me a lot of resilience. I am stubbornly independent and the orders that I keep giving out to people still feel like begging and forcing me to reduce myself to a lesser being somehow. To be completely dependent on someone else is, at times degrading and always difficult. I am just grateful to my husband that he has accepted the role of carer/ servant with such good grace. It makes it easier to bear somehow.
I dont pretend to know what it could be like to do this on a more permanent basis, but I have a much greater respect for those who do now. The term 'from bed activism' was just that, a term. Only now can I somewhat appreciate the sacrifice people are making to get involved and to keep fighting the government and welfare reform whilst being unable to function themselves. Thank you.
These last few weeks have been isolating. I can't even get on to twitter for some reason that this laptop wont divulge (again my husband has swapped to my desktop so i can have his). I have been scared to reveal how bad things are to my friends for fear of sympathy, and on the rare day or 2 that I make it.. outside I want to enjoy it and not spend the time talking about not being well. lack of understanding and fear of being labelled has left me dealing with this on my own, again though I do have my husband.
I spend my days refreshing facebook, messageboards, emails, anything and everything to make me feel like I have some sort of connection to real people, the real world. I have watched every online tv show I can find to watch. I am thoroughly bored and probably a bit depressed.
But I guess thats why I am writing this. To remind myself that this is temporary, and I will get better. I hope that this doesn't come across wrong, that I am somehow 'rubbing others noses in it', but that I should be grateful that it is temporary and that I admire and deeply respect those for whom this is more permanent. I have never truely appreciated your activism and spirit until now. thank you.
Wednesday, 18 September 2013
My inaccessible graduation.
Firstly I must apolgise for my lack of posts recently. I have had a very busy few months. I undertook my undergraduate research project/ dissertation and managed to somehow get 85% on it. I have also just got married 2 weeks ago. Things have been a bit hectic. However, I have just found something to rant about and so here I find myself back at my blog.
It has taken me ten long years to get to this point. Every conceivable (and inconceivable) barrier has been placed in my way to get to the point where I can actually graduate with an actual proper degree. Yesterday I got confirmation from my university. I am going to graduate in november 2013 with a first class honours degree.
As you can probably imagine I am extremely excited about this prospect. Whilst some people have no interest in their graduation ceremony, I have spent the last 7 years looking at the graduands every year with envy thinking one day that'll be me. This year it should be. Until I had the audacity to request some adjustments to my graduation office.
I asked for level access to the stage (IE by a lift) or if that involved too much walking in comparison to the stairs for my husband to assist me on the stairs. I also asked for an end of aisle seat.
The reply I got has rendered me effectively disabled and barred from my own graduation. I was told that I can request an end of aisle seat whilst booking. That bit was relatively simple. However, what I thought was a relatively simple request about level access to the stage seems beyond my university to comprehend.
I was told that the lift was only suitable for wheelchair users, but they suppose they might be able to let me use it if i really needed to, and that it was impossible for my husband to assist me on the stairs but that a member of staff would be on hand to assist. I was also advised that there would be some standing around and waiting backstage.
The email seemed to assume I have some mobility related access needs which is not true. I don't see the need to relay my reasons for needing level access or a specific person to assist me on stairs during stressful occasions, I expect people to be able to just accept.
It would appear that because I am not in a wheelchair that my needs can not be accommodated, or if they will be, it will be at the reluctance of the university rather than at their pleasure. If I had received an email saying that there will be no problem with me using the lift and that they could simply place a chair on it, it would have made me feel like I was actually welcome at the ceremony.
Now, I feel unwelcome and somewhat of a second class citizen. I will be utterly distraught if I don't get my chance to walk across the stage to get my degree but at the moment I can't see a way forward.
It is just typical that the university that told me so many times that I couldn't graduate is still now refusing me that privilege even when I have every right to be there and attend.
I don't know what to do, whether there is any point in fighting this, but with my degree being in education and disability studies it would seem somewhat futile not to use the skills I have learnt to win this battle.
Disability doesn't exist in a wheelchair and sometimes people have unusual access requirements. I have known all along how bad things are at my university but I didn't expect this.
It has taken me ten long years to get to this point. Every conceivable (and inconceivable) barrier has been placed in my way to get to the point where I can actually graduate with an actual proper degree. Yesterday I got confirmation from my university. I am going to graduate in november 2013 with a first class honours degree.
As you can probably imagine I am extremely excited about this prospect. Whilst some people have no interest in their graduation ceremony, I have spent the last 7 years looking at the graduands every year with envy thinking one day that'll be me. This year it should be. Until I had the audacity to request some adjustments to my graduation office.
I asked for level access to the stage (IE by a lift) or if that involved too much walking in comparison to the stairs for my husband to assist me on the stairs. I also asked for an end of aisle seat.
The reply I got has rendered me effectively disabled and barred from my own graduation. I was told that I can request an end of aisle seat whilst booking. That bit was relatively simple. However, what I thought was a relatively simple request about level access to the stage seems beyond my university to comprehend.
I was told that the lift was only suitable for wheelchair users, but they suppose they might be able to let me use it if i really needed to, and that it was impossible for my husband to assist me on the stairs but that a member of staff would be on hand to assist. I was also advised that there would be some standing around and waiting backstage.
The email seemed to assume I have some mobility related access needs which is not true. I don't see the need to relay my reasons for needing level access or a specific person to assist me on stairs during stressful occasions, I expect people to be able to just accept.
It would appear that because I am not in a wheelchair that my needs can not be accommodated, or if they will be, it will be at the reluctance of the university rather than at their pleasure. If I had received an email saying that there will be no problem with me using the lift and that they could simply place a chair on it, it would have made me feel like I was actually welcome at the ceremony.
Now, I feel unwelcome and somewhat of a second class citizen. I will be utterly distraught if I don't get my chance to walk across the stage to get my degree but at the moment I can't see a way forward.
It is just typical that the university that told me so many times that I couldn't graduate is still now refusing me that privilege even when I have every right to be there and attend.
I don't know what to do, whether there is any point in fighting this, but with my degree being in education and disability studies it would seem somewhat futile not to use the skills I have learnt to win this battle.
Disability doesn't exist in a wheelchair and sometimes people have unusual access requirements. I have known all along how bad things are at my university but I didn't expect this.
Tuesday, 16 July 2013
First they came for...
With the benefit cap story yesterday comes the inevitable scrounger stories and the stories (like this) from the daily mail. http://www.dailymail.co.uk/news/article-2364718/No-benefit-child-youre-dole-Tories-unveil-controversial-welfare-plan.html
These stories completely misunderstand the point of benefits. They are not a lifestyle choice but a back up plan. They are not a cushion but a safety net. They are NOT permanent but a temporary solution.
If you consider all the stuff they have been peddling in the last few days some of their suggestions are downright ridiculous.
Teenage mums not being allowed housing benefit, or access to a flat? There no consideration of individual circumstances where this might be the only and safest option for young mums. Or even that they might be responsible enough to consider parenthood. It reduces the young single Mum to a feckless scrounger who wants to live off the state for her entire life. It is at best responding to a dangerous stereotype.
Under 25s not being allowed housing benefit? I have seen this suggestion before. Unfortunately, this would even affect graduates who find work, but a few years later it dries up and then they would become homeless. It will affect anyone, even those people who have worked from the age of 16 and then lose their jobs. It is not a well targetted idee at all. Again, all young people are obviously on benefits to get a cushy life from the state. I think someones been watching too much shameless.
The last one, and the one in the article is the 'best' though. If you have a large family then they think you shouldn't be entitled to more than 2 childrens worth of child benefit. Again, looking at the comments, it seems that people have been sucked in to the idea that all these changes are only affecting those people who haven't worked and have no intention of doing so. These people who have large families and fit into these small criteria are very few and far between, but often highlighted by the daily mail and other media outlets making them seem commonplace. Unfortunately who this will actually affect more is those people who have been working and through no fault of their own find themselves out of work. They didn't chose to have these children whilst on benefits, they didn't choose to lose their jobs. They can't simply get rid of their children when they find themselves out of work.
remember, first they came for, but I didn't speak because it didnt affect me.. or so I thought.
These stories completely misunderstand the point of benefits. They are not a lifestyle choice but a back up plan. They are not a cushion but a safety net. They are NOT permanent but a temporary solution.
If you consider all the stuff they have been peddling in the last few days some of their suggestions are downright ridiculous.
Teenage mums not being allowed housing benefit, or access to a flat? There no consideration of individual circumstances where this might be the only and safest option for young mums. Or even that they might be responsible enough to consider parenthood. It reduces the young single Mum to a feckless scrounger who wants to live off the state for her entire life. It is at best responding to a dangerous stereotype.
Under 25s not being allowed housing benefit? I have seen this suggestion before. Unfortunately, this would even affect graduates who find work, but a few years later it dries up and then they would become homeless. It will affect anyone, even those people who have worked from the age of 16 and then lose their jobs. It is not a well targetted idee at all. Again, all young people are obviously on benefits to get a cushy life from the state. I think someones been watching too much shameless.
The last one, and the one in the article is the 'best' though. If you have a large family then they think you shouldn't be entitled to more than 2 childrens worth of child benefit. Again, looking at the comments, it seems that people have been sucked in to the idea that all these changes are only affecting those people who haven't worked and have no intention of doing so. These people who have large families and fit into these small criteria are very few and far between, but often highlighted by the daily mail and other media outlets making them seem commonplace. Unfortunately who this will actually affect more is those people who have been working and through no fault of their own find themselves out of work. They didn't chose to have these children whilst on benefits, they didn't choose to lose their jobs. They can't simply get rid of their children when they find themselves out of work.
remember, first they came for, but I didn't speak because it didnt affect me.. or so I thought.
Monday, 8 July 2013
i am persona non grata in benefits eyes.
Last time I checked i was a real human. Not according to the benefits agency. This is pretty laughable if it wasn't true.
As of the 1st June my lovely fiance is living with me. We are currently holed up in a 1 bedroom flat with enough stuff for a two bedroom flat. But i'm sure we will get there with sorting ourselves. One of the main reasons why he is living with me before our wedding in august is because of the way the benefits system works (or doesn't).
I was on ESA, in the support group, but this was due to run out in august. In fact as he was moving in I received another ESA50. However, because I am entitled to the higher rate of care DLA he can claim carers allowance, and in turn income support. This is a couple claim, based very much on me as the cared for person.
I hate the language and suggestions of the way the benefits are set up. I am no longer anything bar the cared for person. Daniel is my carer. He is no longer my fiance, husband, partner. He is in law, my carer. This makes me feel extremely powerless and out of any control of the income we have. However, its a happy compromise becuase we both know this is just the way it has to be to get the money we need to live on and it is just benefit speak.
However, there are more serious consequences that I hadn't bargained for. I am not a person anymore. Despite the benefits being reliant on MY DLA and my status as a disabled person, and of course the fact that I am named on the benefit, I can no longer talk to them about my benefits claim. It is completely dis empowering when I am forced to hand over the phone to my partner because (and I quote) "you don't have equal rights on the claim". As, in the eyes of the law I am no longer in receipt of means tested benefits I received a letter from the student loans company asking where my income is coming from. I presume that this could also cause complications with other secondary benefits of being on means tested benefits.
Which goes nicely round to my reason for the call. I was trying to get a proof of benefit letter for my income support claim. you know, with my name on it? Nope, we have to speak to your partner to get authorization to do that. All I can say is hurry up and get a job...
Just to add I read this article yesterday: http://www.guardian.co.uk/money/2013/jul/06/domestic-abusers-family-finances-new-universal-credit They are concerned about the impact of universal credit? what about the impact of the current system on abusive relationships? the couple claim is not equal now. I can't even speak to them without my partner. I am not named on my own benefit. Stuff the future, what about the now?
As of the 1st June my lovely fiance is living with me. We are currently holed up in a 1 bedroom flat with enough stuff for a two bedroom flat. But i'm sure we will get there with sorting ourselves. One of the main reasons why he is living with me before our wedding in august is because of the way the benefits system works (or doesn't).
I was on ESA, in the support group, but this was due to run out in august. In fact as he was moving in I received another ESA50. However, because I am entitled to the higher rate of care DLA he can claim carers allowance, and in turn income support. This is a couple claim, based very much on me as the cared for person.
I hate the language and suggestions of the way the benefits are set up. I am no longer anything bar the cared for person. Daniel is my carer. He is no longer my fiance, husband, partner. He is in law, my carer. This makes me feel extremely powerless and out of any control of the income we have. However, its a happy compromise becuase we both know this is just the way it has to be to get the money we need to live on and it is just benefit speak.
However, there are more serious consequences that I hadn't bargained for. I am not a person anymore. Despite the benefits being reliant on MY DLA and my status as a disabled person, and of course the fact that I am named on the benefit, I can no longer talk to them about my benefits claim. It is completely dis empowering when I am forced to hand over the phone to my partner because (and I quote) "you don't have equal rights on the claim". As, in the eyes of the law I am no longer in receipt of means tested benefits I received a letter from the student loans company asking where my income is coming from. I presume that this could also cause complications with other secondary benefits of being on means tested benefits.
Which goes nicely round to my reason for the call. I was trying to get a proof of benefit letter for my income support claim. you know, with my name on it? Nope, we have to speak to your partner to get authorization to do that. All I can say is hurry up and get a job...
Just to add I read this article yesterday: http://www.guardian.co.uk/money/2013/jul/06/domestic-abusers-family-finances-new-universal-credit They are concerned about the impact of universal credit? what about the impact of the current system on abusive relationships? the couple claim is not equal now. I can't even speak to them without my partner. I am not named on my own benefit. Stuff the future, what about the now?
Friday, 28 June 2013
being an activist bride...
I find myself in a strange position. I'm getting married in a few weeks time, which whilst strange enough in itself isn't the strangest thing. Its the world I feel chucked into thats bizarre. As a bride there is a really strong stereotype and attitude that you get from society. It is consumerist, fake and very sexist, but o so easy to fall into the trap.
In a sign of rebellion and defiance when I realised I was being sucked in I had my hair cut, in a style that I liked and suited me. From that moment on, the illusion of what a wedding, and indeed a bride should be fell away to enable me to be my own bride and celebrate my love for my soon to be husband MY and our way.
I am not a princess or indeed even a girly type girl. I am very practical, down to earth and creative. However, over the course of the last 6 months I have felt like I have somehow let down the whole notion of womanhood by not wanting the perfect wedding day. Its just not me, or my groom. We are both interested in the marriage more than the wedding. Not only that we don't have the money to splash on a big fancy wedding, or the inclination to wait a while so we can save to get it.
Our wedding is dominated by practicability. My flowers are chocolate foil wrapped balls with tissue paper petals (made by me) because I have hay fever and didn't want to sneeze my way down the aisle. It also doubles up as great presents for the guests at the party. Our venue is our local church and the community room, which although small and perhaps not everyones first choice, its our church and its very cheap. My dress is £175 pounds, but although its quite a pretty (off) white dress I am wearing flat shoes that are fair traded. My dress has been hand made by someone in the UK to my measurements. We are having jacket potatoes and toppings at our reception. Its cheap, easy to prepare and filling fod. Everything is (or at least was, perfect, at least for us) until I came to my bridesmaids.
I have 2 bridesmaids, both girls age 5 and 9. I really didn't want to make them feel uncomfortable and I didn't particularly want to dress them up like dolls. I wanted them to enjoy the day and have fun but still without the 'frills'. In someways I was reminded of times where I had to wear dresses and stuff that I didn't feel comfortable in so wanted to give them something to wear that wasn't to girly girly.
Unfortunately, my original plans fell through and I spent the last few days panicking. But, being a bit of an activist bride my panic wasn't about getting new outfits for the girls, it was more about the choice (or lack of) that there was. Every website I clicked on bridesmaids, or even girls dresses featured walls and walls and rows and rows of what I call pinkification. These girls are being groomed into being girly girls as the normal and standard. Society, consumerism, whatever you want to blame it on its there and its happening. Pinkification leads into being overly sexualised, but it comes before that.
There were no skirt and top combos for bridesmaids, or even clothes that could be used for that purpose. Everything was 'pretty' and everything was available in varying shades of pink. I felt responsible for these girls and I thought that by sticking them in pretty dresses was in someway giving in to the stereotypes of being a girl. I wanted it to be different, I really wanted to show them that they could be pretty and beautiful without being all floaty 'pink' and overly girly, but I failed.
I fell in love with some little girl bridesmaids dresses. They were on sale, but they have butterflies on them and they are purple and a little too girly for my liking. However, the main thing is that the girls really love them (well why wouldn't they, they probably don't know much difference (not that its anyones fault)) and I am sure they will look lovely. O, and they were on sale...
In a sign of rebellion and defiance when I realised I was being sucked in I had my hair cut, in a style that I liked and suited me. From that moment on, the illusion of what a wedding, and indeed a bride should be fell away to enable me to be my own bride and celebrate my love for my soon to be husband MY and our way.
I am not a princess or indeed even a girly type girl. I am very practical, down to earth and creative. However, over the course of the last 6 months I have felt like I have somehow let down the whole notion of womanhood by not wanting the perfect wedding day. Its just not me, or my groom. We are both interested in the marriage more than the wedding. Not only that we don't have the money to splash on a big fancy wedding, or the inclination to wait a while so we can save to get it.
Our wedding is dominated by practicability. My flowers are chocolate foil wrapped balls with tissue paper petals (made by me) because I have hay fever and didn't want to sneeze my way down the aisle. It also doubles up as great presents for the guests at the party. Our venue is our local church and the community room, which although small and perhaps not everyones first choice, its our church and its very cheap. My dress is £175 pounds, but although its quite a pretty (off) white dress I am wearing flat shoes that are fair traded. My dress has been hand made by someone in the UK to my measurements. We are having jacket potatoes and toppings at our reception. Its cheap, easy to prepare and filling fod. Everything is (or at least was, perfect, at least for us) until I came to my bridesmaids.
I have 2 bridesmaids, both girls age 5 and 9. I really didn't want to make them feel uncomfortable and I didn't particularly want to dress them up like dolls. I wanted them to enjoy the day and have fun but still without the 'frills'. In someways I was reminded of times where I had to wear dresses and stuff that I didn't feel comfortable in so wanted to give them something to wear that wasn't to girly girly.
Unfortunately, my original plans fell through and I spent the last few days panicking. But, being a bit of an activist bride my panic wasn't about getting new outfits for the girls, it was more about the choice (or lack of) that there was. Every website I clicked on bridesmaids, or even girls dresses featured walls and walls and rows and rows of what I call pinkification. These girls are being groomed into being girly girls as the normal and standard. Society, consumerism, whatever you want to blame it on its there and its happening. Pinkification leads into being overly sexualised, but it comes before that.
There were no skirt and top combos for bridesmaids, or even clothes that could be used for that purpose. Everything was 'pretty' and everything was available in varying shades of pink. I felt responsible for these girls and I thought that by sticking them in pretty dresses was in someway giving in to the stereotypes of being a girl. I wanted it to be different, I really wanted to show them that they could be pretty and beautiful without being all floaty 'pink' and overly girly, but I failed.
I fell in love with some little girl bridesmaids dresses. They were on sale, but they have butterflies on them and they are purple and a little too girly for my liking. However, the main thing is that the girls really love them (well why wouldn't they, they probably don't know much difference (not that its anyones fault)) and I am sure they will look lovely. O, and they were on sale...
Sunday, 5 May 2013
on the buses...
It might surprise some people to learn that disabled people are capable of having a good time. Yesterday, what with it being my birthday and all I decided to have one of those rare occasions called a "good time" often enjoyed by normies and non spoonies.
As I live in sheffield I can very easily get out to the peak district, and on a regular occasion I will travel to Bakewell for 'a therapeutic excusionary event'. This is different from a good time, because it is for the benefit of my mental health. I take my lovely fiance with me, mainly because he enjoys it as much as me, but also because if he doesn't come I will end up in such random locations as nottingham and london (google it, getting from bakewell to nottinghams an impressive feat, especially considering that when I'm not well Im completely on another planet :)
So, anyway, yesterday. I had a lovely morning eating free pancakes cos its my birthday (yes, theres a shop that does this) and decided to hop on a bus to Bakewell for lunch with my lovely fiance. No problems so far. I have a bus pass that enables me to travel with a 'carer' for free, based on the fact I have an established need for 24/7 supervision and care in the form of my higher rate DLA. Although yesterdays use might have been slightly cheeky, because I was having 'a good time' and was traveling with 'my fiance' (dont worry, hes the same guy, our relationship just exists on many different levels), it was still perfectly justified.
After our lunch in Bakewell I spontaneously decided to go to Matlock. With my head being a walking bus timetable, or more accurately my mobile phone is we were soon boarding a bus to Matlock. O, you can't use that here luv, came the response from the ever so lovely transpeak bus driver. He jovially went on to explain that derbyshire doesnt recognise the need for a carer to travel with a disabled person, whilst charging me two pound seventy for the privilege of daring to have 'a good time'. I said, well thats strange, my need for a carer whilst travelling doesn't just automatically disappear when I move into a new county. O no, he says, its not that simple. Its just Derbyshire, nottinghamshires ok, everywhere else is. Just Derbyshire.
Now, correct me if I'm wrong. I was in Bakewell, I had got to Bakewell, with my carer for free. I can get home from bakewell with my carer for free. Last time I checked, Bakewell was in Derbyshire.
My bus pass is meant to give me equal access to transportation, as a replacement for a car, that I can't drive because of my health. It further equalises me because it takes away the barrier I sometimes face when I cant travel on my own. You can probably tell by now that I love the freedom this gives me. I regularly use it to go to Mansfield, Chesterfield and other local places for 'theraputic excusionary events' with my 'carer'. I don't like being told I can't use it, because it disables me, restricts my freedom.
After a somewhat stressful evening journey home from Matlock (the x17 DOES take both of us home). I got to my phone and onto twitter. By this point I had remembered that I had read on Doncaster councils website that I can actually travel with a carer, off peak across England. I tweeted the link to travel south yorkshire, who I have to say was extremely patronising and kinda missed the point. It got into an arguement over what the site does or doesnt say, compared with the 'official' travel website rather than my need to travel with a carer.
That being said, it was a pretty comical exchange, so you can read it here if you want: )I hope this works, but if not try looking at my twitter profile here: https://twitter.com/allbigideas <blockquote class="twitter-tweet"><p>@<a href="https://twitter.com/travelsyorks">travelsyorks</a> my carer bus pass. The one you get for being on higher rate dla?</p>— allbigideastartsmall (@allbigideas) <a href="https://twitter.com/allbigideas/status/330749487104540672">May 4, 2013</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>
In summary, and thinking about it, it is not about the lack, or presence of certain rules that do or dont permit me to take a companion cross borders. It is about the disabling policy that appears to prevent me. It is about the lack of a unified policy across the whole of england that stops all disabled people, who have an established need for an addtional person to travel with them (Higher rate DLA) to travel beyond their home counties. Surely this is not within the spirit of the so called 'national concession' bus passes, if they are not national for all disabled people? I'm feeling miffed, and quite sad about this lack of freedom that I thought I had with my bus pass.
But dont worry, it didn't spoil my 'good time' yesterday, it just might restrict my 'theraputic excursionary events' in the future, which in turn will have a detrimental impact on my mental health. That, or my carer, who will soon turn into my husband might just buy a car and be done with it.
As I live in sheffield I can very easily get out to the peak district, and on a regular occasion I will travel to Bakewell for 'a therapeutic excusionary event'. This is different from a good time, because it is for the benefit of my mental health. I take my lovely fiance with me, mainly because he enjoys it as much as me, but also because if he doesn't come I will end up in such random locations as nottingham and london (google it, getting from bakewell to nottinghams an impressive feat, especially considering that when I'm not well Im completely on another planet :)
So, anyway, yesterday. I had a lovely morning eating free pancakes cos its my birthday (yes, theres a shop that does this) and decided to hop on a bus to Bakewell for lunch with my lovely fiance. No problems so far. I have a bus pass that enables me to travel with a 'carer' for free, based on the fact I have an established need for 24/7 supervision and care in the form of my higher rate DLA. Although yesterdays use might have been slightly cheeky, because I was having 'a good time' and was traveling with 'my fiance' (dont worry, hes the same guy, our relationship just exists on many different levels), it was still perfectly justified.
After our lunch in Bakewell I spontaneously decided to go to Matlock. With my head being a walking bus timetable, or more accurately my mobile phone is we were soon boarding a bus to Matlock. O, you can't use that here luv, came the response from the ever so lovely transpeak bus driver. He jovially went on to explain that derbyshire doesnt recognise the need for a carer to travel with a disabled person, whilst charging me two pound seventy for the privilege of daring to have 'a good time'. I said, well thats strange, my need for a carer whilst travelling doesn't just automatically disappear when I move into a new county. O no, he says, its not that simple. Its just Derbyshire, nottinghamshires ok, everywhere else is. Just Derbyshire.
Now, correct me if I'm wrong. I was in Bakewell, I had got to Bakewell, with my carer for free. I can get home from bakewell with my carer for free. Last time I checked, Bakewell was in Derbyshire.
My bus pass is meant to give me equal access to transportation, as a replacement for a car, that I can't drive because of my health. It further equalises me because it takes away the barrier I sometimes face when I cant travel on my own. You can probably tell by now that I love the freedom this gives me. I regularly use it to go to Mansfield, Chesterfield and other local places for 'theraputic excusionary events' with my 'carer'. I don't like being told I can't use it, because it disables me, restricts my freedom.
After a somewhat stressful evening journey home from Matlock (the x17 DOES take both of us home). I got to my phone and onto twitter. By this point I had remembered that I had read on Doncaster councils website that I can actually travel with a carer, off peak across England. I tweeted the link to travel south yorkshire, who I have to say was extremely patronising and kinda missed the point. It got into an arguement over what the site does or doesnt say, compared with the 'official' travel website rather than my need to travel with a carer.
That being said, it was a pretty comical exchange, so you can read it here if you want: )I hope this works, but if not try looking at my twitter profile here: https://twitter.com/allbigideas <blockquote class="twitter-tweet"><p>@<a href="https://twitter.com/travelsyorks">travelsyorks</a> my carer bus pass. The one you get for being on higher rate dla?</p>— allbigideastartsmall (@allbigideas) <a href="https://twitter.com/allbigideas/status/330749487104540672">May 4, 2013</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>
In summary, and thinking about it, it is not about the lack, or presence of certain rules that do or dont permit me to take a companion cross borders. It is about the disabling policy that appears to prevent me. It is about the lack of a unified policy across the whole of england that stops all disabled people, who have an established need for an addtional person to travel with them (Higher rate DLA) to travel beyond their home counties. Surely this is not within the spirit of the so called 'national concession' bus passes, if they are not national for all disabled people? I'm feeling miffed, and quite sad about this lack of freedom that I thought I had with my bus pass.
But dont worry, it didn't spoil my 'good time' yesterday, it just might restrict my 'theraputic excursionary events' in the future, which in turn will have a detrimental impact on my mental health. That, or my carer, who will soon turn into my husband might just buy a car and be done with it.
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