It's not just a word.

This is a part ranting, part polite post to ask people to consider not using ableist language such as 'spazz' 'spack' etc. I've noticed on twitter (and elsewhere) a lot of people using this word, and then when challenged, they claim they didn't realise it was a nasty, horribly offensive word. 

In case you're unaware, 'spazz' and 'spack' are abbreviations of the word 'spastic'. Spastic is a descriptive word used to describe a type of cerebral palsy. I myself have spastic cerebral palsy. It means my muscles are affected by spasticity. Spasticity refers to an unusual tightness and stiffness to muscles, it usually occurs because of brain damage. Spasticity means that muscles become difficult or even impossible to use. It can cause pain because muscles that are tight and stiff can ache and become uncomfortable. It also inhibits function because if muscles are tight and stiff they permanently shorten, this can mean that joints are held in a flexed (bent position) therefore limiting their usage. That is what spasticity and spastic means. 

I can't remember the first time I heard the words 'spack' or 'spazz' or when I even realised they were derogatory terms used to describe people like me. I know I was a child though, because I remember hearing them in school and feeling like I'd been kicked in the stomach. I think I may have realised when kids in school used to do impressions of 'spacks' and I realised they were holding their hands in the same way my hand was. Luckily, I was very rarely called a spack or a spazz to my face. That wasn't to say I wasn't teased because of my cerebral palsy, I was. I was called peg leg Jim throughout my primary school years because I wore a splint on my leg and had a limp. 

I've had people say to me when I've challenged the usage of these slurs that it's just a word and that I don't have the right not to be offended. All I can say to that is that, it's easy for people who are not emotionally affected by such words to say that. As a disabled person, I'm acutely aware of the ableism in society and the barriers I face. To me, the fact that these words are thrown around freely is another barrier. These words have negative connotations and are used in a negative context. People apparently use these words to describe acting like a fool, or being socially awkward, or for being clumsy and dropping things. I don't think my spastic cerebral palsy means I act in this way, or if I did, I don't think my CP is to blame. It's not too bold to suggest that people using such slurs to describe these things could lead to people having negative assumptions about my condition which could impact upon life experiences for people with spastic cerebral palsy. 

Please don't think I'm policing language or whatever, I'm not, I just wanted to say my piece. I've spent a lot of my time talking to others with cerebral palsy and a lot say that they hate this word and that it upsets them. I've spent a long time keeping my fury about these words locked up. I used to feel ashamed and embarrassed when people use these words around me, it made me feel like my cerebral palsy was something to be ashamed of because I knew these were negative words and therefore that must mean that having cerebral palsy was shameful, something to be embarrassed about. Language is powerful, it's emotive, it impacts on people. It has consequences, such words aren't 'just words'. I get that people might use these words and not realise what they mean, I do. That's partly why I've written this to help people understand the origins of the word and to help them understand why some people will be hurt by their usage. 

An urgent call for action on Atos.

Hello, 

I just thought I'd share the letter I've sent to my MP pleading for answers and action on Atos. Unless you've been living under a rock you'll probably be aware that Atos have been failing disabled people very badly. I've been rather angry since more news emerged this week showing that 40% of Atos assessments are unacceptably poor and I knew I needed to voice my concerns. I know it's probably a futile exercises writing to my MP, but I can't just vent on Twitter. So here's the letter I've just sent off:



I am writing to you to express my concern about Atos. As you are aware, Atos currently have contracts to assess disabled and sick people for Employment Support Allowance (ESA). It has become increasingly clear that Atos (and the work capability assessment) are failing vulnerable people woefully. 

In the midst of the royal baby excitement, important news broke that the DWP has instructed Atos to raise their standards. It emerged that 40% of Atos assessments were 'unacceptably poor. That is no small number, it clearly indicates that the system is broken and in need of urgent remedy. One of the consequences of the failure of Atos is that appeals to overturn atos decisions are costing the taxpayer more and more money - the number of appeals have more than trebled in four years.

 Of course, it's not just the financial cost of poor Atos decisions and subsequent appeals that needs noting. The human cost of Atos incompetency is much greater. If you are one of the unlucky 4 in 10 that experiences a poor atos assessment, you will likely have your entitlement to ESA stopped and told to go get a job and put in a JSA claim. What happens if you're too disabled or ill to seek and hold down a job? It regularly takes months and months of waiting until you get a tribunal date to get your atos decision overturned. In the meantime, the stress and strain of the uncertainty can cause a deterioration in both physical and mental health in people that are already having to cope with illness and disability. It's not just the disabled person this impacts upon, but also carers and families who will have to offer more emotional and practical and financial support to help them through the Atos crisis. The situation is getting increasingly desperate and  more and more horror stories are emerging. We've had whistleblowers speaking out against the callous way they've been told to treat disabled people. We've heard of many people committing suicide in the wake of wrong atos decisions and poor treatment. There's frequent reports of Atos 'doctors' subjecting disabled people to humiliating treatment, such as one doctor telling an incontinent lady to wear a nappy to work. It is a system which is completely devoid of compassion and humanity. It's reported that Atos receive £3billion for their contracts. I believe it's in the interests of the taxpayer for the government to take urgent action against Atos before any more lives are lost or ruined.  

In the wake of the news of unacceptably poor Atos assessments, Mark Hoban announced that new firms would be brought in to conduct assessments from Summer 2014. I would like to know why the government think its fair and acceptable to subject disabled people to poor assessments in the meantime? I would also like to know who in government is being held accountable for the failings of Atos? It is simply not acceptable to place all the blame on Atos. Someone in government has allowed this Atos incompetency to continue, despite repeated warnings and evidence that the Atos situation is not working. I do believe the Conservatives and Lib Dems have missed an open goal here to right the wrong of Labour. It was Labour who created this Atos and WCA, however, your reluctance to take action urgently means a sizable portion of blame lies at your door. 

Thank you for reading I look forward to hearing from you. 

My experiences with CBT.

Today I want to talk about my experiences with Cognitive Behavioural Therapy (CBT), which I was prescribed in order to help with my anxiety and depression. In case you're unaware, I had a nervous breakdown in April 2012, this was a result of ignoring my symptoms of depression and anxiety until I basically snapped. I currently take medication for these illnesses (a mixture of antidepressants and anti-psychotics). My very supportive GP suggested that CBT might be useful for me, particularly with the anxiety. It took me nearly a year to feel mentally strong enough to be able to cope with the demands of CBT. In case you don't know, CBT is a talking therapy that aims to challenge maladaptive thoughts and behaviours which contribute to mental illness. 

My CBT took the form of weekly two hour group therapy sessions, over a course of six weeks. The course was lead by 3 psychologists and there were about twelve participants in the group. It was structured really well, each week focussed on a completely new area such as an overview of mental illnesses,maladaptive thinking, unhelpful behaviours, coping mechanisms, healthy lifestyle and preventing relapse. The structure of the course was good, as it focussed on a completely new area each week it meant that you didn't become overwhelmed by having information overload. Initially, the group format really scared me, I'm a bit socially anxious, so I was incredibly nervous about going there about my mental health. It took a lot of courage, in the end I was grateful for the group format because everyone was so supportive and it made me realise that absolutely anyone can be affected by mental illness. There was a real mix of people: a retired lady, a fellow young disabled lady, an ex-soldier, it really was quite diverse. We were set homework each week which forced us to reflect on the course and to look at mental illness in a problem-focused rather than an emotion-focused way. 

CBT was eye-opening for me. I've had anxiety ever since I can remember and so I thought I knew all there was to know about it. However, CBT really made me understand why my anxiety was so debilitating and hard to deal with. I got an insight into why thoughts and behaviours are the lifeblood of anxiety. We were shown 'thinking traps' (http://youth.anxietybc.com/thinking-traps) and I realised this was the only way I thought! I also realised that avoidance behaviours (which I engage in A LOT) were a sure fire way to exacerbate anxiety. 

A problem I picked up on with CBT, is that it almost seems to good to be true. It breaks down anxious and depressive thoughts and behaviours into such a simple and obvious way that you read it and think that's all anxiety/depression is so it should easily be a cure for these horrendous illnesses. In reality, anxiety/depression is so much more than just a set of thoughts and behaviours and that's why I don't see CBT as some miracle thing. 

Having said that, CBT has definitely helped me in numerous ways. Initially, I thought it was a waste of time as I still felt low and like a worry doll. However, I've noticed real differences in the way I'm thinking and behaving, albeit these are quite subtle, but hey, I'll take any improvement!
 Some examples of improvements include setting myself realistic goals. People with anxiety/depression often set themselves huge unattainable goals,  because they expect incredibly high standards of themselves. One thing I used to do was tell myself I needed to find a full time job right now and if I didn't I was a failure otherwise. Now, I've realised that full time work is never going to be an option for me, my cerebral palsy just makes that impossible. CBT has really helped me manage my expectations, I've come to terms with the fact that F/T is not possible and there's no shame in that. It's helped me realise that maybe volunteer work is a good option to start with, so that I can see what I'm capable of, and to build up my self esteem which is at rock bottom. 



CBT has also helped my positivity, and to lose a bit of the negative focus. Here's an example: in the past two years I've had four surgeries and six lots of botox to help with my cerebral palsy. My last surgery on 29th May has been a brilliant success. I had my tendons released in my hand and muscle removed from my thumb - the result is a beautifully open hand and I'm so so happy. Meanwhile, my leg is just getting worse and worse, and the consultant has told me further muscle lengthening surgery would be a big, big risk. Now, pre CBT I would just have focussed on the negative and get really angry at myself. I used to blame myself for the fact my disability was getting worse, instead I've realised that I have no control over my CP, so there's no point worrying about it. I'm complying to my treatment recommendations so I'm doing all I can, and that's a positive thing. 

I think CBT has helped me accept having anxiety and depression and the fact that recovery is a continual process and that there isn't an end point. I've always had anxiety, I'm convinced it's a part of my personality and therefore I'll always have it. Initially, this may strike you as defeatist and pessimistic, however for me, it's a positive thing. I've wasted endless hours wishing I could be 'normal' wishing that I would just snap out of anxiety and depression. I've resented the fact that I have them. That isn't healthy and probably feeds them. However, I've realised, that by not fighting them, by not trying to 'get better' it means they've lessened their grip on me. I have more control. I ignored the symptoms of depression for a good two years and as a result it made me incredibly ill. I've realised by accepting the fact depression & anxiety are always in the background it's probably a good thing. It means I can be aware of possible triggers and just to take good care of myself basically. I suppose this is all part of the steep learning curve that is mental illness. 

So for me, I'd say that CBT has certainly helped, it hasn't got rid of my mental illnesses but it's definitely given me a different perspective. I've gained a good insight into anxiety and depression, such that I'm able to recognise unhealthy thoughts and behaviours and it's equipped me with strategies to deal with them. I only completed my course six weeks ago, so it's still early days, I won't know if it's had a long term impact yet. I think the real test will be how my mental health will be in the winter, as I'm certain I get a touch of SAD. 

Thanks for reading and feel free to tweet me (@thisisamy_) if you have any questions!

Chicken Noodle Soup Recipe

Today I'm going to share my chicken noodle miso soup recipe. It's a super easy one, that healthy and tasty as well. 

Ingredients (Serves 4, or two hungry people!)

900ml miso soup mix. (I bought mine from Tesco, I use two sachets)
2 skinless and boneless chicken breasts
100g rice noodles (or egg if you prefer)
1 thumb-size piece of fresh ginger, peeled and grated. 
1 plump garlic clove, peeled and crushed. 
4 spring onions, peeled and thinly sliced. 
2 tbsp dark soy sauce. 
1/2 can sweetcorn (drained)
4 mushrooms, peeled and thinly sliced. 

Method
1. Make up the miso soup mix and add to a large sauce pan. Add the chicken breasts (whole), garlic and ginger. Bring to the boil and simmer gently until the chicken is cooked through. You'll know it's cooked through when the plumpest part of the breast has no pink remaining & juices run clear.This should take around 20-25 minutes.
2. Take the chicken out and put on a chopping board. Add the sweetcorn, mushrooms, spring onions and noodles to the soup. Simmer for around 5 minutes
3. Meanwhile, using a fork, shred the chicken breasts. Return to the soup.
4. Add the dark soy sauce and serve. 

And there you have it, lovely chicken noodle soup, told you it was easy! This is a really good recipe to adapt to your personal taste, you can use prawns, pork, spinach, you can add chillies if you want spice. 

Let me know if you make this!

Cerebral Palsy Awareness Month: My Experiences with Education (Part 2.)

Hi All! 

Firstly thanks to everyone who read my first instalment in this duo I have decided to write as part of my contribution for cerebral palsy awareness month, I had a great response, it's really appreciated. 

So today I'm going to share my experiences with you about my time in further education and higher education. After completing my GCSES, I enrolled at college to do A levels in Psychology, Sociology and English language and literature. I knew from a young age that I wanted to go to university, initially I wanted to  obtain a degree in law, but I decided to pursue a degree within the realms of the social sciences as I find human behaviour endlessly fascinating, and I want a career where I can help people. 

For me, I was really lucky with my further education college. It was literally at the end of my road, so I only had a short walk each day. This enabled me to pop back home frequently during the day to swap over books and folders so I wasn't carrying stuff around unnecessarily. I was also incredibly lucky in that I had a very good friendship group and one of my friends, Calum would carry my folders around for me, I didn't even have to ask, he just took them off me. I'll never forget such a lovely, simple gesture. In terms of disability support, my college provided me with a ground floor locker to store things. They also allowed me to have 25% extra time for exams, with regular rest breaks. This really helped me do very well in exams as I it allowed me to take my time, so that my writing could be legible. I was also offered the opportunity to do my exams on a laptop, but I declined as I thought my typing would go haywire with exam nerves, however it might help others. The rest breaks were great too. I have kyphosis and scoliosis because of my cerebral palsy and I find it really affects my posture, sitting down for long periods triggers really bad pain, so getting up to walk about was a great thing. That's all I've got to say about further education, to be honest, the level of support was much the same as secondary school. It was tough doing subjects which were very wordy and quite labour intensive; however, I was focussed on going to university as well as being incredibly interested in the subjects so I didn't mind the challenge. 

Now, onto university. I have so much to say about this. Deciding to go to university was a huge decision, equally terrifying and exciting. I decided I wanted to move away for university. For me, it was a great opportunity to grow up, get some independence, as well as obtaining a great qualification. Now, my parents and I realised that to achieve this ambition would require a lot of planning, researching and thinking to meet the challenges my cerebral palsy presented. There was limits in my ability to do everyday domestic tasks, and in terms of self care. I was really keen on going to Liverpool, as it wasn't too far from home, and seemed a lovely city. I loved the look of Liverpool Hope University, so I went to meet the disability officer there and she was honestly so positive and supportive, that it put mine and my my parent's minds at rest that I'd be happy if I went there. The campus itself was lovely and small, so it'd be easy to get around. The residential halls were on campus, so I wouldn't have a lot of walking, or have to travel on public transport to get to lectures. So it was very disabled friendly. 

I was initially very overwhelmed after my first meeting with the disability officer. I hadn't realised quite how many obstacles and challenges my cerebral presented on a daily basis. I mean, I was 17 years old at the time, and in the difficult transitional period of going from a child with a disability to an adult with a disability. I was used to my Mum doing everything that was difficult, without a second thought. If I went to university, I'd be standing on my own two feet for the first time ever. We were informed that we could apply for help from social services to provide financial support, so I could buy my own care. This took a lot of fighting, and writing to my MP to agree for them to fund my move to university. Very stressful! In hindsight, I couldn't have done without it though. Going to university really made me realise how much cerebral palsy impacted on my life, and in some senses it was a bitter pill to swallow. Luckily the fact that sharp shock was needed to achieve an ambition helped. 

In terms of assistance to cope with the challenges the actual studying of the degree presented. I was advised to apply for Disabled Students Allowance (DSA). This was a grant to allow me to meet the extra financial costs my cerebral palsy imposed on me whilst studying. I used it to buy note taking support, (could not have coped without it!), I used it to fund ink/paper so that I could use my time better and not waste precious energy copying things from the computer. It also paid for me to have a height adjustable desk and a bespoke chair to cope with the poor posture associated with my CP. If I'm honest, this did not help alleviate any back pain. It also funded Dragon Naturally Speaking software and a computer. As I'm one-handed, I am very prone to repetitive strain injury in my good hand, so anything to minimise the amount of typing I had to do was welcomed. The DSA was very flexible in allowing me to purchase things if an unforeseen issue crept up related to my CP. 

The university itself were very supportive of my disability. They gave me a ground floor flat, to save me having to go up and down stairs. Every Tuesday one of the lovely domestic staff would come in and hoover my bedroom, whilst I was at uni. All this extra help really helped me do well at university, by minimising the effects of my disability. I also continued to have extra exam time and rest breaks. However, it was tough. I wasn't your typical student, I'd go to bed early every night, and spent every spare minute doing uni work. I did my degree full time, so the workload was heavy. My CP makes me so tired that I simply had no spare energy after lectures and studying to go out and party. Luckily, I'm am introvert anyway, so to me I didn't feel I was missing out. 

So anyway, In July 2010 I graduated with a degree in Psychology and Criminology, and was sure that I wanted to do a Masters degree. I decided to do it in Health Psychology, as I was keen to work with disabled people afterwards. It became apparent to me that it would be a good idea to do my MSc part time, because the course itself looked demanding, and I wanted to do it to the best of my ability, and I couldn't do that if I was tired all the time. This meant it would be a two year course instead of one, but getting a good grade was my priority.  I would say that the support I received for my post graduate degree was much the same, as obviously my needs were the same. In the end, my decision to go part-time was vindicated, as I had just been re-referred back to an orthopaedic consultant for increasing pain and deformity with my CP. As a result, I needed lots of botox, serial casting, and eventually three operations in the space of 18 months. This was tough to fit in around studying, but the uni were supportive, and gave me extensions as and when I needed them. On top of this, I ended up getting diagnosed with depression in April 2012, just as I was finishing my degree. I had to pause my studying, and focus on recovering from depression. That was the unbelievably tough, I was scared to go back to university, for fearing that I couldn't cope with the pressure. Luckily, I did, uni were very patient with me, telling me to focus on myself. My dissertation took months longer than I anticipated to finish, but I did it. I'm now awaiting my grade, and hope to graduate this summer. 

This turned into a bit of a rambling post didn't it? Anyway, I guess I just wanted to share my experiences with how cerebral palsy and university fit together. I think it was probably scarier for my parents, the thought of me moving 50 miles away from home, and not knowing how I'd cope on my own. I think it's one of those cases where you have to feel the fear and do it anyway! 

My best advice for anyone with cerebral palsy planning to go to university is to RESEARCH, RESEARCH, RESEARCH! You have to think of you care needs as well as the any additional education needs. Really quiz the university on their disability support. And trust your instincts, if you don't feel they'll take your disability seriously, then don't go there. Forward planning is key, it's not something you can rush into. Applying for disabled students allowance, support from social services, can take a long time, plus any appeals! So try and apply way ahead of time. Try and speak to others with the same condition as you, see how they coped with the challenges of university. Chances are they have words of wisdom to share. (The HemiHelp Facebook page will always have young people on hand). I found it helpful to research possible careers related to my degree beforehand. I didn't want to fork out thousands of pounds for a degree to find out that the possible careers would be off limits to me! Finally, be honest with your university about your disability. If you feel you need extra help, like an extension, ask  for it. You don't want to suffer in silence, at the expense of your degree mark. It's best to ask for extensions early on, in case they think you've just left the work at last minute! 

Happy Cerebral Palsy Awareness Month! As ever, any questions, just ask. You can also catch me on twitter (@thisisamy_)

X

Me and Adam, Graduation day!

Cerebral Palsy Awareness Month: My Experiences with Education (Part 1)

March marks Cerebral Palsy awareness month. I think this is a great initiative. Cerebral palsy is one of the most common disabilties affecting children and it's effects on affected individuals varies greatly. As it's such a prevalent condition, yet is not so well understood amongst the public, I think it's great to try and raise awareness about this condition.

 As a person with cerebral palsy I feel that it is my duty to make a contribution to this campaign. I decided that one area I would like to talk about was education. I know from participating in the Hemihelp and Scope forums that education is one area that causes angst and worry for parents with kids with CP. Education is so important for any child and it's not straightforward for parents of kids with CP to decide what is best for their child. Should they go mainstream? Should they attend special school? Should they be statemented? What extra needs will they have during their school career? The list of questions really is endless. My experience with education as a child with a disability was really mixed. It was a tale of two halves. In this first post I want to talk about primary and secondary school and then I will do another post detailing my experiences with further education and higher education. 

Primary School.

My parents felt that mainstream school was the most appropriate for me to attend. So I ended up going to my local primary school, where there was roughly 25-30 kids to a class. At this point, I was not in reciept of a statement. For those that don't know, A statement of special education needs is a statement documenting that a child has extra needs due to a disability, or health condition, that affect their ability to learn. This means that the school recieve extra money for that child to provide the appropriate support. This money could be used to provide extra staff to help the child, or to provide exrta materials. Not surprisingly, these are difficult to obtain, and often require attendance at a tribunal to recieve the statement. If won, the statement is usually reviewed annually, to ensure the child's needs are met. I'm not entirely sure why I did not receive a statement. I think maybe as I was so young, the full extent of my disability was not yet known. In hindsight, I think it was wrong that I wasn't statemented, as the lack of support during primary school made life more difficult that it probably should have been. 

I'll be honest, I hated primary school. I was treated as a 'normal' child, in that I didn't have any additional needs. I'll give you one such example. My cerebral palsy means that I have difficulty holding the paper still when writing, and I find it difficult to keep my writing tidy. I remember being told off by my teacher for having messy writing. I also had difficulty drawing lines as using a ruler and drawing a line is not easy to do one handed. I always felt under pressure to do this as well as my classmates. You're probably thinking why didn't I just ask for help. Well, when you're a child aged between 6-10. It's not always that easy. I felt that as the class was so big, I'd be a nuisance asking for help. When I was in primary school, I didn't even realise I had a disability. Yeah I wore splints, and couldn't do skipping, handstands etc, but I didn't realise I was different. Or if I did, I didn't realise that not being able to write neatly was related to my cerebral palsy. For me, at that age, the extent of my disability was 'I can't use my left hand, and I wear purple splints'. I never told my parents about how unsupported I felt, not until I was an adult. I think it could have left with me low self esteem. But, I excelled at other areas such as reading and spelling, so I guess that helped keep my confidence at a good level. 

The other thing that made me hate primary school was Maths. I am really really bad at maths. Now, this is related to hemiplegia. I only realised this as an adult, but boy, was maths hard. Only certain aspects though. Algebra and shapework I cannot do. You could explain it to me a million times and I won't be able to do it. My parents were so concerned about my maths ability that they paid for me to have extra maths tuition through Kumon maths. It was a limited sucess because no amount of tuition could make up ammends for my very specific maths difficulties. Luckily, I was excellent at mental arithmetic and other areas of maths, so I was able to compensate. None of the teachers ever picked up that I struggled so badly in a few areas, but I think because my SATS were results were average, I guess it never caught their attention. 

 I can't really remember much else of primary school, other than that it was a miserable time. Luckily, secondary school was a complete contrast. 

Secondary School

My local comprehensive was a large school, circa 2000 students. It's the largest school in Shropshire so my parents had strong reservations about sending me there. My Mum's concerns were justified when we went for a visit and she noted that it was all stairs (not good with my weak leg, poor balance) and limited disabled access. What really convinced her that I would not be attending was the fact that as soon as they heard my CP diagnosis, they automatically assumed I would be going in the SEN unit away from my classmates. Basically, they assumed that because I had CP, I was intellectully disabled when I was not. 

Anyway, we went to look around a much smaller school (total 500 pupils) and it was perfect. They were so supportive of my disability, encouraging my Mum to apply for a SEN statement so they could offer me tailor made support. Unfortunately, as we lived 8 miles away, we weren't in the catchment area, so my parents had a hard fight to get me enrolled. Luckily we won, and in hindsight, getting statemented and getting accepted at that school was one of the best things to ever happen to me. 

Secondary school was a happy time for me. I was becoming more aware of my disability, and my limitations, but my school were amazing at meeting my needs. Some of the specific things my statement allowed me to have access to was : one to one support in practical subjects such as science, technology and maths. This was brilliant because while having that extra person there might have marked me out as different, it enabled me to participate more fully and be equal to my peers. I was also given one handed friendly maths equipment (magnetic ruler and protractor) so I could do these bits of maths without extra assistance. I had a ground floor locker and a box in my form room so I didn't have to carry all my books around. I was allowed to leave lessons 5 minutes early to avoid busy corridors and rushing about. When I was in year 9, I had to have 8 weeks off school for surgery, but work was sent home, and I didn't fall behind. 

Naturally my parents worried about how I would cope as I approached my GCSEs but I was well supported. It was decided I would be allowed 25% extra time for exams, which was fabulous. To help me cope with the fatigue I get from CP, I was allowed to do one less GCSE and I used the free lesson time to do coursework and home work. This was great because as people with CP use so much more energy, I often got home from school and slept most of the evenings and weekend so it was difficult to do all my extra school work.

During PE, I was allowed complete control over whether I wanted to participate in activities. Some team games such as netball and hockey I sat out as I felt unsafe with my poor balance and worried about getting knocked over. However I happily participated in badminton and fitness. 

The only problem that remained throughout my school days was maths. My parents and I didn't realise that my specific maths learning difficulties were connected to hemiplegia, so no support was sought. When I was a child, all medical interventions were based on the physical aspects of cerebral palsy. So the invisible aspects were neglected due to ignorance. Luckily I achieved a C in maths and since learning that maths issues are related to hemiplegia, I've put my frustrations to bed. 

Trying to decide what support is appropriate for a child with cerebral palsy is difficult. Not eveyone is affected the same, so a 'one size fits all approach' won't work. Some parents worried that statementing a kid might lead to them feeling different, or being labelled. However, my experience with statementing was incredibly positive. It didn't mark me out as different, but it allowed me to reach my potential. I truly believe that without it, I wouldn't have got my great GCSEs or ended up as university. It allowed me to be equal to my peers and minimised the challenges cerebral palsy presented. I think parents just have to make sure that they are aware of all aspects of cerebral palsy and to be flexible in what they are prepared to do. It's often just a case of dealing with challenges as  they happen.

Thanks for reading, and happy Cerebral Palsy Awareness month!

Response to the Daily Mail Cartoon debacle.

Hi, 

Just a quick post today. So, on 25th February, the Daily Mail published this cartoon, accompanying the article discussing how many disabled people are rushing to claim Disability Living Allowance before it is phased out to make way for it's replacement, PIP. 

Understandably this cartoon caused fury and outrage amongst social networking sites. In fact, I was so infuriated by what I saw as disabilist propaganda, that I felt moved to complain to the cartoonist, as well as report this to the Press Complaints Comission. I know we have come to expect such atrocities as this from the Daily Mail, but I have had just about enough. Disabled people are suffering disproportionately with austerity, and we are constantly being demonised and stigmatised by the likes of this vile paper that I lost my patience and bit back. 

Anyway, I sent an email explaining that not only was this cartoon offensive, it was also wholly inaccurate. Now, my condition is permanent, it's incurable and impacts greatly on my life. I have been through the process of applying numerous times, (in fact since I was a child) and every few years the DWP make me jump through hoops, to prove that my cerebral palsy hasn't spontaeously got better, and that my care needs, and mobility needs are still the same. Whilst I think it's a bit ridicuclous I am continually reassessed given my condition, I can in someways understand it. It still doesn't excuse the fact it creates much stress and uncertainity. Also, DLA. doesn't make it better. It doesn't get rid of the pain, the tiredness or the inability to do certain things that comes with a diagnosis of cerebral palsy. I should note that, although I have long since accepted my disability, and I am proud and happy to be who I am, I HATE relying on state support. I hate admitting that I need help every single day. I don't think I'll ever get used to that. Anyway I am majorly digressing, I decided to blog the response from the email, since tweeters were asking what the response was, and it's a little difficult on twitter to reduce it to 140 characters.

So here was the response:

 

Dear Ms Jones

Many thanks for contacting our cartoonist, Jonathan Pugh.  Both he and the Mail sincerely regret if you found his cartoon, regarding the Disability Living Allowance, offensive.

His sole intention was to mock those who claim that the DLA system is such an easy touch and the minority who aim to abuse the system to the detriment of genuine claimants.  It is the role of the cartoonists to satirize and provoke. By suggesting something so preposterous the cartoonist hoped to make it abundantly clear that the idea of someone claiming for a blister was a joke. Neither he nor we were implying that genuine claimants should not be fully supported.

Nevertheless, we appreciate you taking the time and trouble to respond to us and we have taken your concerns on board.

Now, whilst I appreciate the response, I am not impressed. I totally missed this interpretation of the cartoon. Given the Daily Mail's reputation for being grossly inaccuarate and misleading on disability welfare issues, I do not for a minute agree with this response. I also don't think that the majority readers will see the purpose of this cartoon. If their commments are anything to go by, they already ignorantly think claiming DLA is an easy process, with the disability benefit handed out for the most trivial of ailments. 

I still think I was right to complain and to be upset by it. I guess it's all a matter of interpretation.