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?

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...

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>&mdash; 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.

on becoming a voluntary student

Since writing my last blog about what next for me I have been doing a lot of thinking, researching and questioning. I have got frustrated, confused, annoyed and upset over this whole 'future' thing.

But then, a little seed that had been slowly growing in my head suddenly erupted into a fully grown tree of an idea and its been borne out of my fustrations with what next and my future.

I want to study disability studies, or education, or both or similar. I would like to be able to do it distance learning, or in yorkshire at least and part time would probably work best for me. I would even love to be able to do it on a modular basis.

but thats just not possible.

In some places I got to applying before realising that the place I was applying to was using disabling language. As I am writing my dissertation on a similar theme it felt a bit hypocritical to apply, and it concerned me that somewhere I might want to study cant use appropriate language for something so simple. I tried to look at other places, but the requirements ranged from the ridiculous to the downright impossible. Even a modular based course wanted me to be in the education sector as a professional before starting the MA, but surely if I want to do education first before a job I should be able to?

So, disillusioned with the whole system, getting frustrated about my future I started to question and reflect on what I have learnt so far. The most memorable, and enjoyable part of my learning journey so far has been the last few months. I like to call it gatecrashing, but its a little bit different to that. I attended research forums, where researchers discuss what their current thoughts are and what they are doing next. I went to an inaugural lecture by someone whose book I had read. I went to a business seminar about a company I liked. I gatecrashed a few lectures where I wasnt enrolled on the module because I heard that something exciting was happening. I went along to random events that I didn't really know what to expect or what I was really doing there.

and I learnt. Not in the traditional sense, but in a completely new way. I was learning so much about things I didnt know, as one of the speakers I listened to said I was understanding, not just learning. It was refreshing and engaging. It was challenging, often having to catch up to new theories or ideas that i hadnt thought of before. I was in control of what I went to, what I chose to engage with, and for the first time I was actually enjoying it. There was no assoicated pressure with the learning, it was just there and I was able to take it in.

And then, to my surprise I started to use it and apply this new knowledge to my traditional educational life. There was a cross over in some senses. I found myself thinking about futurism in relation to my dissertation last night, and after a particularly inspiring speech I managed to write over 2000 words in the space of a morning.

I wasnt paying for any of this, bar my time and the cost of getting there. It was free and I invited myself along. The benefits were beyond what I could have imagined and have created a random collection of thoughts that I can draw on in the most unexpected of places.

So yes, I am thinking very seriously about taking a year out of formal education. I'm wondering if its possible to seek out these events and opportunities to learn and become a voluntary student. The thought of setting my own agenda and being in charge of what I want to learn excites and scares me. However, given my experiences over the last few months, and my frustrations of feeling like I don't fit with any further study (and my choice of work is pretty non standard too) I am seriously considering this option and really believe it will be a positive and interesting time spent learning beyond what I should be able to in a classroom.

allowing myself to think about my future.

I woke up early this morning to start writing my final piece of work, my dissertation. Yesterday I went to my final lecture. Thats how it feels, final. The end, or perhaps the beginning. This is the furthest I have ever got in higher education and the end is in sight.

It is a  somewhat brave step to allow myself to think about my future. At the age of 28, I have never got beyond the undergraduate student stage of my life. I have, for the last ten years felt 'in transition'. Now, I am about to transition into the next stage of my life, but for the first time in my life I am unsure what that looks like.

For the first time there is no 'normal' path to follow. There are many options yes, but all of those are as normal as the next. Getting a job, going into further study, taking a year off are all perfectly acceptable things for a 'normal' student to do when they graduate.  But me, am I normal?

Over the last few weeks I have slipped (or thats how it feels) into attending various 'academic' type events. I have really loved this experience. I feel like I have the freedom to actively engage and learn what I want to, when I want to, in the way I want to. It is, ironically the first time I have actually enjoyed education and taken an active role in forming it for myself. Inviting myself to random and completely abstract talks, seminars and lectures has really opened my mind to new thinknig and really helped with my current project within my dissertation.

In the past i have felt like education is something that is just there, to be done for some reason, long forgotten in the rebelious nature that I find myself having towards my degree. Now, looking forward I can't see my life without that education being there. Although it might have felt like a crutch its now something I really want to do.

However, post graduate study feels, I dunno, daunting. For the first time in my life I can do anything, but dont have the first clue what I want to do. There is no easy answer, and with time rapidly passing until september I have to make my mind up soon. Anyone with any suggestions or answers to this I would be greatful to hear it.

o, and Im getting married in august. thats a normal thing to do isnt it?

why I wont be #beddingout

I have read and seen Liz Crows wonderful #beddingout on twitter and on roaring girl. It is amazing and I applaud her and anyone else who feels able to join in. The reasons are justfied and I agree that there is a weird interplay between private and public lives for disabled people. It is a big step to invite people in to your private world, and one that I don't think I could do, at least not very well. I too have this private and public life going on and its something that I am currently struggling with. This is the topic of my blog.

I use my impairment where I can as a political tool, as with my disability. They are both there and are intertwined with each other in an inseparable way. However, If I were to come out as disabled, which is, in a lot of ways what bedding out is all about then it has to be into a world that would understand me. And I am scared that we are not there yet.

When only the other day I was attacked for daring to shop in marks and spencers to get ready meals, and the attacker was a disabled person, and demanded to know several times about WHY I needed those meals from that specific place it made me question once again how much of my private life I am willing to share.

When that same person attacked me again for not justifying my need of the single seat on the bus then it just made it worse. I use these examples, where i  have been oppressed on the bus, or where i have specific needs to highlight that different people have different needs and those needs are complex and difficult to understand. I do not expect people to attack me for my access needs and demand explanations for them, especially not disabled people. There should be a level of acceptance, and well, politelness. If I show you one part of how I life I am not opening the floodgates to be asked more detailed and personal questions, I am just showing you.

I have to write for the government why I need those things, but I think thats a discussion between me and them, with a specified purpose, to enable me to live some sort of a life. I guess I am lucky in that I can keep my disabled life hidden, because, in the main my impairment is also hidden.

there are many things that happened yesterday that might be better to reflect on, so I apologise for concentrating this blog on something that happened to me personally and not national news.

I blog, a lot. Sometimes its a blog of links to a certain topic, like spartacus or the day the DLA died etc. and then sometimes its my own thoughts on a particular issue. I posted one of the later types a few weeks ago. I don't know if you remember the theme on the news that particular day, after all one benefit attack seems to roll into another. It was highlighting the apparent need for crisis loans (and hopefully according to some all benefits) to be paid by food voucher. I perhaps, wrongly used a conversation that was had on facebook to highlight the point that the general public can't see the difference, and indeed even some campaigners can't.

Anyways, anonymised conversation and blog was up and nothing more thought about it until yesterday when one of the participants in the discussion found the blog through my twitter and seemingly waived their right to anonymity through various attacks through my twitter.

What I wanted to reflect on, well a few things really. The first is how, even amongst the disabled peoples community there is animosity, jealousy and hatred at how other people chose to live their lives. Having to justify your own access needs to anyone is hard enough, having to explain to another disabled person why you do things in a certain way is pretty inexcusable. Just because I do things differently, doesn't make it wrong, it just is different and right for me. Asking me why I have those needs, or indeed anyone is just plain rude. I expect it from some quarters. A few months ago the dentist refused to believe that i couldnt have my teeth out 'normally' until theyd witnessed the sheer terror and panic for themselves. To hear another disabled person question my own needs is just wrong.

Another thought I had was about my right to blog what I want to. I enjoy being controversial. It provokes reaction, debate, engagement. Yesterdays reaction surprised me, because if you believe something that strongly then surely you shouldn't be hiding that opinion, but be proud of it and not afraid of having it? I will continue to post whatever I want to, I will continue to anonymise anything i use, but I will not stop posting something that might offend someone. Why? because I hope that if it offends you that you take a moment to consider why it does before simply switching off or starting a pointless argument. I stand by the phrase that I might not agree with your opinion, but i will defend to the death your right to say it.