My hour of hell..

 I read this story with tears. Not just as any new mum would, but with my experience in hospital now right at the front of my mind. I want to share this story because it will at least help me to shout and scream and rant and say that it should never have happened. Its already starting to annoy me how the media are making links between her mental health and this incident.
http://www.bbc.co.uk/news/uk-england-bristol-30334855

As a result of my impairment, and my impairment alone I was subject to a full social services assessment whilst pregnant with my first child. Although I asked how I was meant to prove that I was going to be a good mum when I wasn't a mum yet, no answer was forthcoming. The aim of the assessment was not, as it had been first put to me as a way of supporting me as a mum but for safeguarding my unborn baby.

The pressure we had as new parents was immense. Everything had to be perfect, we had to be prepared for things that most new parents hadn't even considered. Upon doing some research on the process we were following I found that mothers with mental health problems are put under scrutiny which results in them having to be better parents than other parents.

We were "lucky". Social services found that there were no serious issues with us and that we had passed the test of whether we could parent or not. By this point I was nearly 30 weeks pregnant and spent a lot of that time convinced I wouldn't be allowed to keep my child (despite reassurances to the contrary). When we finally got the report in writing to say that there would be no more involvement it was the best feeling in the world.

I went into hospital on the thursday and my baby was born at 17:02. On saturday we were all discharged by the medical doctors and were given the all clear to go home.

This was when the problems started. I spoke to my named midwife (every mum had a named midwife per shift) about going home. She said she would go and find out what the next steps were and came back five minutes later.

She stated that we were not going to be able to go home until she had social services approval that we could, as it stated this on my notes. She went on to explain that because it was saturday it wouldn't be done until monday.

My once rational (given new baby brain) head had now just turned to mush. I explained to her that  I could provide her with the report from social services stating we were cleared from their "support". I could provide her with x,y z of things stating similar. But no, she wasn't able to confirm this. As I broke down she did finally turn around and say she would attempt to discover the truth as she went out of the room.

I am so grateful for my Mum in law at this point. As it wasn't long after visiting my husband was now half way across the country taking his grandparents back home. If my Mum in law hadn't have been there I wouldnt have remained as calm as I did (which wasnt very calm).

All rational thought went out of my head and it felt like social services had lied and that my baby who I had spent the last 24 hours getting to know was going to be taken from me. I cant explain that feeling, I hope that most new parents will never have to. I was trying to work out every possible way out of that hospital with my baby. Despite in my logical head knowing that I was in the right and they had made a mistake, it didnt matter. At that point it was real. I couldn't even pick my baby up for a hug because they didnt feel like mine anymore.

Some time (about half an hour or so) later the midwife came back. All this time where I was seriously distressed I was left alone in a private side room with my child. I cant explain the potential risks with that decision, but Im sure i dont need to. She had cleared it up, it was a clerical error.

This was no relief. There was no relief until I was at home with baby a little while later. The special moment that I should have had to take my baby home from hospital was ruined because I felt like I was running away before they changed their mind.

I wrote and I was given an apology, which helped me to move on. But it is stories on the news that brings it all home to me. The judgement and scrunity, the assumptions and the labels and the hour of hell where I thought I wasn't going to take my baby home.

All because I have a mental health impairment.

Im not saying it was right or wrong, I just wanted to share my story and the pressure, judgement and scrutiny that I was under.

Dear Normal student

When I wrote my undergraduate dissertation I didn't think I would be undertaking more research on the same subject just over a year later. To be honest, I even didn't I was undertaking this research at the time. It is only upon reflection that I find myself the subject of my own research and really feel the need to share it.

My research concerned the concept of the normal student. I looked at undergraduate prospectuses and analysed them through the lens of normalcy. What I found was a set of institutions that had found their "normal" student and had tailored their prospectus to fit. If you didn't exist within that normal student framework you were either not mentioned, or mentioned in a specific way that roughly translated to "your a burden and we don't want you here", or thats how I read it. There are certain characteristics that mean you move closer to being that normal student and of course further away. Call it the universities equivalent of a catchment area, but based on you instead of where you live.

I graduated last year with a first class honours degree. I then slipped into doing things that "normal" 29 year old's do and got married and had a baby. It was around the middle of August that our family realised that the best option for our future would be for me to return to study and become the primary income earner.

I found the application difficult. There was no space for why we as a family needed me to study this course as it was all about me and why I wanted to. However, for the first time in my educational career it wasn't just me I was considering, or even why I wanted to study. I did, and I do have personal reasons for doing this. However, the overriding reason is to provide for my family unit. I didn't include this on the application as I felt that it wouldn't be received well.

I submitted the application and waited for a response. I was called for an interview on the first week of September. This is where it all falls apart. Whilst at the interview I was informed that the course was due to start in 3 days time. I had submitted my application in mid august and received the offer of an interview on the 15th August. There was no indication on there that this would be the start date. Freshers week wasn't for another two weeks.

Whilst I am not adverse to the concept that as a student there are certain sacrifices you have to make in order to study, this left no time for  your average "abnormal" student to arrange things like childcare, or disability support, or other minor details like moving home and other such minor technicalities. As a normal student at this institution, it would appear that you needed to have the ability to drop everything and turn up to start a course in three days time prepared and ready to study.

Upon completion of the interview I was promptly told that I wasn't going to be offered a place. After a week or so I received feedback as to why.

I had apparently arrived at the interview ill prepared. This was due to the fact that I had failed to provide my English and Maths GCSE certificates, Degree certificate and photo Identification. Fair enough you say, but let me explain in more detail the reasons why this isn't "fair enough" and actually a really big barrier to the abnormal student (and something pretty ironic and funny at the same time).

I spent the whole three weeks before my interview preparing for it. When I say preparing for it, I mean ripping apart my house to find my GCSE certificates which seem to have mysteriously vanished off the face of this earth. As I mentioned I have recently got married and had a baby. This involved moving house. For anyone who has moved before I don't need to explain the chaos that surrounds you for it appears months and perhaps even years on end after the event. This is made somewhat harder by the fact that I was pregnant at the time of moving so things are still a little out of place with us having a new born baby. But, this isn't the biggest problem, or the reason why I consider this to be an attack on the abnormal student, although it is a part of it. I did my GCSE's fourteen years ago. When I rang my old school up they couldn't even tell me what exam boards they used for my year or even had any computer records for me. I did my GCSE's in the year 2000, computer records didn't exist. I am a relatively young student. For any mature student this requirement is a bit restrictive, especially when one considers that this is for a post graduate course and that I have a degree (did I mention I got a first?). I find it strange that so much merit is placed on a qualification that I received as a sixteen year old. The irony is that I was under the false impression that universities needed to see these upon enrollment. Yes, that's right, I studied at the same university at undergraduate level, and graduated last year. I did mention that they needed to see my degree certificate... mmhmm..

Without revealing the subject area (which I am reluctant to do as I want to preserve anonymity) it is difficult to highlight this. However, in all areas of post graduate and even undergraduate study it is of vital importance to have a certain level of English and Maths. However, I have forgotten most of, if not all of my GCSE level work. That's not to say I'm not competent in these areas, its just to say that using my GCSE certificates is not an accurate measure of these competencies. My degree required a certain level of English which I am sure is the equivalent to a GCSE. I live independently and manage my finances to a reasonable standard. Again, I am sure this shows a level of functional maths skills that is equivalent to GCSE maths.

This restricts the abnormal student from applying and studying at a university if they either don't have or can't provide their GCSE certificates. In this case the abnormal student could be "mature" or "disabled" or even "international" or from other non traditional educational backgrounds.

I couldn't provide them with photographic identification. Whilst this isn't entirely true, the sentiment is accurate. My passport is still in my maiden name. I haven't used it since getting married and I have been busy changing my name on all the other records that various organisations have on me (including this institution). It costs 90 pounds to change your passport if you are a female who changes their name by marriage. You have to buy a brand new passport. It's not the top of my to do list. I was rudely asked for my driving license instead. However, I can't drive on medical grounds. I provided them with a copy of my marriage certificate and my passport. This wasn't good enough. This is a double blow to the abnormal student. The ones who can't drive for legitimate reason, or that don't have the need for a passport, or who have got married. I hasten to add that my marriage certificate was enough evidence for the institution to change my name on their records to produce my degree certificate in my married name. It is also sufficient evidence for a DBS check, and even a credit card application. 

The other point was my lack of experience within education. Again I will attempt this without revealing the subject area but it could be hard. The requirement for subject specialist knowledge and experience at post graduate level is not unusual or unexpected. However, what this institution have said to me is that my experiences don't fit within their very specific and narrow framework of what is "relevant" or essential to starting their course.

Aside from my vast experience of supporting students within education through placement work and similar activities, I have spent the last 14 years within post compulsory education, and of course before that within compulsory education. As a student who carries the label of being disabled I have had my fair share of both positive and negative experiences of this sector, and it is from those experiences that I became motivated to study. It wasn't from supporting other students but my own authentic experiences of actually being there and studying within education. My debate on the tuition fee rises doesn't come from the classroom through theory or taught knowledge, but my own experience of seeing the impact that this has had on education whilst I have been studying. I started within higher education when there were no fees, and watched as the government put the fees up how the students and institutions reacted to that. The theory helps to explain it, but I apply my experience to theory and it mixes  it together to make it come alive. But all this experience was dismissed outright. I didn't have a good enough level of educational experience.

This dismissal of the abnormal surprised me at first. But then I thought back to my dissertation and research project which highlighted that it wasn't unexpected. It is a shame though, that by failing to account for the abnormal during the admissions process we are simply ignored and even more under represented in the higher education system, which makes me even more determined to carry on fighting and highlighting these inequalities and the discrimination that exists, even if it is under cover and systemic considered standard practice.

Government annouces complusory cancer treatment...

Today the government announced that in order to claim benefits people with cancer will need to have treatment to cure it. Despite the fact that this treatment doesn't actually exist, the government think that people who have cancer need to get back into the work place and stop being a drain on society. It costs the UK alot of money every year to supplement these skivers lifestyles and they can't even be bothered to go and get treated and help themselves.
It is quite simple really. The government dont want to be handing out free cash to those people who simply chose to be ill and dont make any effort whatsoever to get better. Its only a bit of cancer, it doesn't mean your incapable of working.

Shocking news eh? Well, no its not true. However, the government are trying to mandate treatment for those people who have mental health problems. Which as you can tell from the above simply wouldn't be tolerated with any other impairment.

So why mental health? It is easy to blame the person for their mental health problems and therefore make it their responsibility to simply "sort themselves out". However, realistically it is as much or more about the societal pressures that people are facing contributing to mental health problems than the person themselves "deciding" in their own little bubble to become mentally ill. It will take a combined approach to combat mental illness which includes tackling the very stigma underlying this idea. People with mental health problems are not lazy or workshy.

This leads onto another problem. Treatment. Without an effective and timely approach to treating people with mental health problems as individuals who need individual help it just wont work. The standard NHS policy seems to be at the moment a 6 or 12 session of CBT or similar and/ or drugs. These standardised treatments are not a cure all fix for everyone. Sometimes mental health problems are simply more complex than that. Sometimes it takes years of intensive treatment to allow someone to stablise enough to move forward. Sometimes it takes years to even get to a point where someone is well enough to be treated (theres the difficulty there).

The mental health system in the UK is a skeleton service at best. Treatment waiting lists are long which makes the person waiting even harder to treat with the standard 6 or 12 sessions when they finally get to the top of the queue. Whilst these people are waiting they might not be able to hold down a job and may well end up on benefits. It might make sense to get some of these people well in order for them to continue with their life. What is wrong is that for the people who are seeking treatment it is not their fault that it simply isnt available, and the government is attempting to demonise them as oppose to the treatment providers.

I was on benefits for a long time because there simply wasn't any treatment available for me on the NHS. I now fund my therapy through my DLA, and I would love to get this from the NHS but I can't. If the government focused more on fixing the mental health system instead of punishing those who attempt to access it then it might be a good start.

And then onto the final point of my story. People who refuse treatment. There may be many reasons for this. It might be they have already tried the 6 CBT sessions and it didnt work out for them, or the side effects of the drugs they take arent worth the benefits to them. They might not be ready to accept they need help or perhaps even quite happy in their madness. It might be that the person recognises that it is not something wrong in them but in society that needs fixing.

The government wouldnt tell people with cancer to simply get treated and get back to work so why does it think its acceptable for people with mental health problems?

(link to news article here:  http://www.telegraph.co.uk/news/politics/conservative/10964125/Tories-discuss-stripping-benefits-claimants-who-refuse-treatment-for-depression.html

Accessible?

I HATE the word accessible. It is a non word that is used to describe someones presumptions that their venue or building is suitable for everyone regardless of well, what I don't know. It's sometimes used to mean that there is phyiscal access such as a ramp or a lift or a toilet with a hoist.

As I said, I hate it. It is impossible to make somewhere accessible to all regardless. Where a ramp exists it means that wheelchair users and babies in prams can get in, but seeing as these are longer it restricts those who can only walk a short distance but not up stairs.

What I actually need to know, isn't if a venue is, by the venues standards "accessible" but by mine. How would I judge that? I would prefer information on what the venue actually means by accessible detailed. I can then decide for myself if its accessible or if I still need to make requests for additional information or assistance in accessing it.

Far too often i have been to places where something that i hadn't even thought of as an issue becomes an issue of access and a big barrier to participation because I didn't know, or expect there to be a problem. If there is no lift to the middle floor, but access to all the other floors by lift then it needs to be made clear. If there is a long walk between the venue and the toilets, wouldnt it be great to know this in advance? Or even the size of the lift.

It changes the statement that the venue is making from we think we are good enough for you to are we good enough for you. It puts the power back into the control of the people accessing the venue. Knowing the distance between facilities and lifts, even what sort of lighting there is would be really helpful information.

Although I do have some responsibility to make sure that a venue is accessible for me, how can I ask for adjustments and support in access if i dont know what it is i am accessing in the first place? It is a two way street.

Mental Health- the silent killer..

I am angry. I am angry at the world and I want to do something about it but I can't. I want to live in a world where it is just as easy to talk about suicide as it is about cancer, but I don't. Both are pretty.. lethal but only one gets the celebrity endorsements and the great charity fundraising and the publicity. As a poster that I have seen around the internet says you don't tell someone with cancer to pull themselves together or to snap out of it, but with mental illness and its surrounding symptoms it seems perfectly acceptable.

This is a specific rant. Today I found out that a charity I sponsor is at serious risk of closure. For the sake of £65,000. It costs them £200,000 a year to run the charity. This charity reaches out to suicidal people and stops them from dying. Last year they intervened in over 800 peoples lives to help them see a way forward where the person didn't think there was one.

Yet, because of the nature of their work they don't like to draw attention to their cause for fear of promoting suicide. It is a legitimate concern but a very frustrating situation. It angers me that it is ok to talk about cancer or other serious illnesses and its ok to raise money for them, but its not ok to talk about suicide. I am not saying their decision is wrong because I completely agree with it, but I can still get angry.

I don't want to see this charity close, its work is vital. However, what I can do, what can we do when we live in a world where its "brave" to fight through a cancer battle but to even consider suicide is "weak" and "the easy way out".

If you want to I am sure you can probably find out which charity I am talking about. I hope it doesn't go because its been saving people's lives for ten years and I hope it can continue to do so for another ten, but it wont unless something seriously changes in the next few weeks. I fear that society just isn't ready to talk about suicide and mental illness enough to save the charity.

sad news. sad day.

Coming out for LB :)

I never discuss my impairments. one, I don't like too and two it is against the social model of disability which I really agree with that it is society that disables us more than our impairments (how much more depends on how much you agree with the social model.

But then, something happens, and it all changes.

I read this. 

http://www.dailymail.co.uk/news/article-2564731/Mother-tells-battered-bathroom-door-stop-daughter-12-suffered-seizures-drowning-bath-late.html

at the same time as reading about laughing boy and how his death was preventable if someone was watching over him in the bath. He had epilepsy and died in the "care" of the NHS. For more see here: http://mydaftlife.wordpress.com/the-report/

I sit here, feeling it. On a very personal level. and I can't be silent anymore.

I have non epileptic seizures. I have had these since I was around 15 years old. They are stress related and their severity and frequency fluctuate. It is the reason I get my DLA and my bus pass. I need 24 hour supervision and care, as these are unpredictable and can sometimes be nasty. (I don't often get this supervision and care but thats by the by).

I guess you could say I am lucky. I have only come close to injuring myself a few times and didn't quite break my hand at one point. But it still affects me, personally when I read about these things. There has to be an answer, surely?

There are many things I can't do safely because of my impairment. I don't let it disable me though because I find ways to work around it. It just makes me think that there has to be a safer way to have a bath for people like me, for people who its not really that safe.

In my old place I had a shower cubicle fitted. It meant that I could safely get clean (as in if i wasn't well enough to stand up then I couldn't shower). Here, I don't. So, usually I don't bath without supervision. It is safer.

But then, surely in todays world there should be a solution to this? A way to safely bath with privacy, dignity and safety in tact? I don't if we should look to the techy world or somewhere else but I know there has to be a solution to this somewhere.

I know we can't go back in time, but for the future, surely there has to be a better way?

(and if someone could invent me a car I can drive that'd be great)

some thoughts on the LB report

Please look at this twitter profile if you don't know of the hashtag #justiceforLB . https://twitter.com/JusticeforLB

It was in the news (local bbc news) yesterday that LB's death was preventable. http://www.bbc.co.uk/news/uk-england-oxfordshire-26334445 .
I haven't been able to stop thinking about this news since then. It has been going round and round in my head about so many different things related to this that I haven't made any comment and kept in the shadows. But then I think I have found what I want to say, and it was @bendygirls tweet this morning that reminded me and summed up what I wanted to say.

 <blockquote class="twitter-tweet" lang="en"><p>Good to see media coverage starting <a href="https://twitter.com/search?q=%23JusticeForLB&amp;src=hash">#JusticeForLB</a> but as ever, no-one with a learning disability has been asked to comment</p>&mdash; BendyGirl (@BendyGirl) <a href="https://twitter.com/BendyGirl/statuses/438612418944851969">February 26, 2014</a></blockquote>
<script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>

I have to be honest. I haven't read the report. I don't honestly think I could. I doubt many people with a label of learning difficulty/disability could either. It reminded me of the spartacus report, which for those who don't know was put into an easy read format by a charity. I think thats where I started reading it. I can't take in a lot of information, and certainly not a lot of technical speak. From what I have seen of the report on blogs it seems to be that the report into LB's death is far from user friendly.

I am not saying that it should be made into an easy read format (although the principal would be nice). I am commenting that there is a phrase resonating through bendygirls tweet and the report.

"nothing about us without us".

This phrase first started being used by the disability rights movement in the 1970s. Disabled people were fed up of their lives being dominated by the medical professionals and other organisations. It is an empowering statement, one that is still around today. Going back to the report "they" are discussing LB in an abstract sense. It is written by professionals for professionals. It is not written for the average person in the street to understand. Whilst I understand reports like this have a place I feel it is important to reclaim the humanity of LB after this report is published. He wasn't "a patient" or "a label" but a human being.

It frustrates me that reports exist that are inaccessible and unwieldy. I don't know what the answer is, but I know that if anyone is to actually learn anything and do anything about LB's death they need to include everyone affected in an equal and accessible way.

Going back to @bendygirls tweet, they wont ask anyone with a learning disability to comment because I doubt they could find anyone who would be able to read the report or have been allowed to participate on an equal level.

Edit and updated: YaY an easy read version.  http://peoplefirstengland.blogspot.co.uk/2014/02/connor-sparrowhawk-report-easy-read.html?spref=tw

Also look here for other coverage on this:  http://mydaftlife.wordpress.com/the-report/