Life with cerebral palsy: a little reflection

I never thought I would write anything like this piece. The internet is a harsh place, not somewhere you’d choose to write about the hardest aspects of your life. But after reading this piece by a fellow blogger, and after an illuminating first year at university, I decided that maybe the truth shouldn’t be so scary. I have come to accept a lot this year, and I want to share that with you. Here’s (just a little bit of) my story.

I have cerebral palsy. I have long accepted the harsh truth of this fact: I have brain damage, I will never walk. I need help to get dressed, eat, shower, go to the loo and anything else physical. Fine. I’ve never known any different and, honestly, I don’t care. It always amazes people when I tell them this; but it’s only half the truth. There are also social aspects of disability, and because these are harder to talk about, I often just don’t.

As a child, I was blissfully unaware of much of what was coming my way, but since struggling to make friends at secondary school I’ve been keenly aware of society’s attitudes towards disability. At 14, no one wants to be different. No one wants to be friends with someone they see as different. That’s just the way it goes. I went to a mainstream school and was the only person with a visible disability. I was very different and it was pretty lonely.

Loneliness and boredom characterised my teenage years. Even with the friends I did have (who were some honestly amazing people) it was hard to socialise outside school because of the pervasive lack of access and my reliance on a carer or, most of the time, my parents. No one wants to take their dad to meet their friends at Starbucks, and anyway, he understandably had better things to do.

I worked hard and I did well. I found joy in writing. But it was hard, and the more I fell behind socially – as house parties and romantic relationships became the norm for many of my peers – the harder it got. There were times that were very bleak and when I thought it would never get better. My self-confidence disappeared and I lived in constant fear of the future, thoroughly convinced my cerebral palsy would stop me from achieving my strived-for goals.

Looking at the last couple of paragraphs I see a one-dimensional account of my experience of cerebral palsy, which, it is important to remember, has never dominated my life. I have always been more interested in other things. And there have always been positives to my disability, not least the wonderful people who accepted and loved me, even on the days when I couldn’t appreciate it. Some of them, I simply wouldn’t know if I had been able to accurately place one foot in front of the other, and such an ability wouldn’t be worth their absence from my life. They all know, I hope, who they are, and I love them beyond all the words in the world.

They are still here now (give or take) but rather than softening the blows of life, they are sweetening the successes. For, despite what I thought, things did get better. I have just completed my first year at university and, for the first time in a long time, I am happy. A year in, the transformation of my life still takes my breath away. The freedom afforded to me by full time care is indescribably glorious, as is that which comes from leaving behind what held me back for so long. People of 18 and 19 are amazingly open-minded, and I have met incredible friends who do not care that I cannot do very average things for myself. I have written about the joys of university already, but I am writing this as a thank you to these new people.

They will probably never understand how, but by accepting me they have allowed me to accept myself. For so many years I pretended to the world that my disability didn’t matter. This, I thought, would allow people to see past it and just make it go away. In reality, it became the elephant in the room. Now I will freely discuss cerebral palsy – I am writing this, ridiculously – and the elephant has shrunk to the occasional awkward moment when someone simply forgets that I am disabled.

I think I know that things will never be easy, and the future is still scary. The job market for every graduate is difficult – add in an electric wheelchair, speech impediment and whatnot and things get trickier still. I feel left behind when it comes to relationships, and the stats for disability and relationships aren’t good. It is hard, sometimes, to smile and nod at my friends’ escapades in this particular area. But then I remember that if they’re talking to me about it, they don’t see me as being beyond such things myself and I breathe a little easier. And if there’s one thing I’ve learnt in the past 19 years, it’s that a surprising number of people see me for who I really am and not for my cerebral palsy. All I need is for one of those people to be the right guy, and it’ll be ok – right? And with all the success my writing has had this past year, I am quietly hopeful for a job, too.

So no, being disabled isn’t as ‘fine’ as I make it out to be. But it isn’t half as bad as I once convinced myself it was. There is a middle ground which I am beginning, perhaps belatedly, to settle in to. And maybe in finally writing this, I have accepted cerebral palsy as part of who I am. This is my story and my truth, and I wouldn’t change it. Not now, not ever.

Who are we?

With the advent of time (or, of having time to do stuff, or nothing, or sleep), I have been able to think. Actually, properly think. As a self-professed nerd and overthinker, this has been rather enjoyable. Most of said thinking has been of the random, non-illuminating sort (probably a good thing), but last night, unable to sleep due to this surprising heat wave we seem to be having, the ramblings of my mind hit upon a rather interesting topic: which of your defining attributes are actually your personality and which just happen to be there?

Let me explain. I started this romp through my synapses by being very happy about the successful passage of the gay marriage bill in the House of Lords, which means that same-sex weddings will probably start taking place from the beginning of next year. What a boon for us socially-progressive types, and what a way for the Lords to prove themselves to actually inhabit the twenty-first century! Anyway, I started wondering why I care quite so much. Ignoring my position as an equality-espousing liberal who therefore naturally supports such measures, the bill does not affect me at all.

Apart from the fact that, in an abstract way, it does. Gay marriage is part of a wider fight, and at two in the morning I suddenly realised what the end-goal actually is: to stop it mattering if you are not straight, or not a man, or not white, or not able-bodied, or not any of the things which, in our society, it is apparently necessary to be in order to just be able to get on with it. The status quo, clearly, is not ok.

As someone who is not able-bodied (nor, indeed, am I a man, but we shall ignore this complication for the purposes of keeping this post from becoming an incomprehensible rant), I have become a ‘disabled person’. Am I though? I mean, strictly speaking I am – having cerebral palsy is pretty conclusive evidence. But I take issue with the phrasing; my existence as a person has somehow become secondary to the fact that I have CP. CP does not define me, my love of my friends and family, my politics obsession and my sense of humour say infinitely more about who I am than my jerky legs. The only reason I spend such an inordinate amount of time thinking about disability is because society makes it impossible not to. My equality campaign, despite having a myriad of small but important goals, is really about making disability irrelevant to living one’s life. 

The same is true of same-sex marriage; being gay seems to me to be secondary to wanting to make a formal commitment to someone you love. The legalisation of same-sex marriage recognises this, turning ‘gay people’ into ‘people who are also gay’. In the battle to be allowed to choose how we are defined, that is a huge victory.

The judge was wrong

I write this with great sadness. On Wednesday Tony Nicklinson, a man with locked-in syndrome, died having refused food for six days – after the High Court denied him the right to die. In March, I wrote a post detailing why I thought he should have been granted this basic right. I still stand by these arguments.

So when the verdict came in that Tony Nicklinson would not be able to die with the help of a doctor, I was angry. But now I can’t help but wonder if the judges regret their decision. Did they fully understand the consequences of their legalistic approach – to push a man to end his own life earlier than he may have done otherwise? And did they really have any idea what this man’s life was like?
Answer: probably not.

Surely we live in a society where compassion allows some types of cases to be held without setting a precedent? This may have annulled one of the judges’ main worries – that other severely disabled people would become more vulnerable if they allowed Mr Nicklinson to die. It seems that pragmatism was once again ignored, which is more than just a shame.

Nothing can be done now to change the outcome in Mr Nicklinson’s case. It is too late. But my family, and others who knew him, can take comfort from the public reaction to what happened. A vast majority saw the obvious and supported Tony’s campaign. Our hope now is that public pressure will force Parliament to do something.

Change is very clearly needed. Medical advances mean that more people are going to survive serious brain injuries. Obviously, this is good news – no one is arguing for medical progress to be halted. But the reaction of the doctor who saved Tony’s life is telling: he almost wishes he hadn’t. What good is saving a life if it is going to be full of such severe emotional pain? But we can’t have doctors asking themselves if they should save someone – that would clearly just be wrong. Doctors need to know that the law will allow patients to decide for themselves. To leave the law how it is would underestimate so many things that it would just be ludicrous.

Whether the politicians have the will to tackle such an emotive and controversial issue is yet to be seen. Pressure may still have to be applied. As a society, we should let Tony’s family rest and grieve, and so take up the fight in their name.

Coldplay – a review

This is my review, now live on Blue Badge Style, of Coldplay’s concert at the Emirates Stadium on Saturday 2nd June. The opportunity to write for BBS was fantastic and a tribute to social media’s networking capabilities. It’s a fantastic site carrying out a very important function, and I hope I will be able to write for it again in the future. Being published by someone else is a huge honour, and I am very grateful for it.

A Coldplay concert was always going to be good, so the only question was how good. Unspeakably good, as it turned out. So now I am going to have to attempt to put the experience into words.

I’ve been a Coldplay fan since I heard Speed of Sound on my mum’s stereo when I was about seven. Even when I barely understood the words, I loved singing along to those fantastic melodies. My love for the band grew with me, with their second and third albums being among the first things on my iPod aged eleven. Now I’m seventeen and nothing’s changed – going to see them live was a dream come true.

We arrived way too early and had to wait it out while Robyn and Rita Ora attempted to warm up the crowd. Even if some in the audience were fans – most weren’t – there w as a distinct feeling that we wanted Coldplay and no one else. At quarter to nine we were finally given what we wanted. Four ant-sized people appeared on stage. The crowd was so awestruck that it went quite silent – this was it. And suddenly it didn’t matter that we were so far away.

The first chords of Hurts Like Heaven broke our trance and everyone (apart from me) was up and dancing. The famed wrist bands lit up, dazzling everyone with a multicoloured glow. You could almost hear the collective ‘ooh’ over the music. I forgot my inability to dance and flung my arms around – as Chris Martin soon told us, we were there to ‘forget everything about ourselves’. This would be a lot easier if his lyrics weren’t so emotional. Everyone in that crowd had a connection to those songs that went beyond knowing all the words so, needless to say, the atmosphere was incredible.

I could say something about every song, but I would be here for pages and pages, so I’ll give you the highlights. The first stunner was Yellow, one of the most beautiful songs ever written – in my opinion anyway. Martin almost spoiled it for us ladies by dedicating it to his wife Gwyneth Paltrow when really we wanted him to sing it to us, but we forgave him because – well – how could you not? The audience knew all the words, making it even more spine-tingling.

The old songs were definitely the best – classics from X&Y and Parachutes stirred the crowd into a mild state of euphoria. The Scientist was absolutely fantastic live, as was In My Place. Mylo Xyloto is a good album, but it doesn’t match the lyricism of the previous ones. That said, Charlie Brown got us all dancing again, increasingly wildly in my case.

The crowd swelled with excitement at the first chords of Viva la Vida, snatches of which echoed around the stadium long after the band had retired for the night. It was when everyone was on their feet for this one that I realised how good the wheelchair seating was – I could see clearly over everyone’s heads. In fact, the access arrangements were all perfect. The disabled loos were locked, but unlike other venues, the staff knew how to open them without asking fifteen different people. My only complaint is that a wheelchair space can only be booked with one companion. On this occasion that was ok, as I was going with my mum, but in future if I went with a friend I would not be able to use the loo – which is slightly problematic really.

But the music was more important. Paradise was wonderful. When they finished, they disappeared off stage. Was that it? Surely not. We waited. Suddenly, there was Chris Martin alone on a small stage at the back of the pitch. He was now human sized, which was somehow a bit odd. My musical hero looked very real – and by this time very wet; it was pouring.

The other band members joined him one by one and sung Everything’s Not Lost, which suited the intimate small stage perfectly. They were soon back on the main stage, however, for the one I’d been waiting all night for. Fix You is possibly my favourite song ever, despite – or maybe because of – the fact it normally makes me cry. I couldn’t wait to hear it live. My god, it was good. It is a credit to the show that I was so happy no tears actually formed. But I would hazard a guess that very few of the 58,000 people in the stadium had dry eyes, I certainly didn’t. It is an amazingly powerful show, which I took glee in belting out knowing no one could possibly hear me. The concert was an utterly mind-blowing experience, with no exaggeration.

They played us out with Every Teardrop is a Waterfall, which contrasted greatly with Fix You and meant no one left sobbing. The whole night was magical, the band every bit as good live as on radio, and the Emirates is a great place to go on wheels.

A WOW letter

This is the letter I sent to TfL today. I hope it will give you a flavour of what we are doing. Feel free to follow suit!

Following our previous correspondence, I would like to inform you of my recent experiences on your buses. I would first like to say that the treatment I have received from drivers has improved, and several have helped me by asking buggy owners to vacate the wheelchair space. This is really appreciated. Your drivers also seem to be more aware of the distance of the bus from the curve and how this affects the angle of the ramp. Often they reposition the bus, making it easier to board. Again, this is a fantastic improvement. I was also very encouraged by your last letter detailing TfL’s plans to improve the experience of wheelchair users on London’s buses. I was particularly pleased by the proposal to introduce flip-up seats, as I can see that this will make travel much easier.

Nevertheless, I would like to raise a few queries. On many recent journeys, several ramps in a row have failed in the same way. When the driver puts down the ramp, it retracts as soon as it makes contact with the pavement. I understand that machine failure is no one’s fault, but this has happened on eight separate buses. On one occasion, the whole bus lost power – suggesting there is a serious electrical fault on many of your buses. WOW would appreciate an investigation into this, as the fault is obviously making travel trickier for wheelchair users.

I would also like to draw your attention to the fact that the signs asking buggy owners to vacate the wheelchair space are placed at about knee-height, and are therefore not noticeable. This just doesn’t make sense and means that buggy owners are unaware of the fact that they are preventing a wheelchair user from boarding. This again just makes travel more of a hassle than it should be. I do not think it would cost a lot to relocate these signs and doing so could actually save both time and effort for your drivers.

Finally, I would like to query your fare policy. Wheelchair users, as you know, tend to rely heavily on the bus service and so our free travel is a great help. However, I and many other wheelchair users are obliged to travel with an assistant. As in most jobs, I cover my assistant’s expenses which she incurs at work and therefore pay her bus fare. This obviously negates my free travel. I understand that TfL is subject to strict budgeting, but WOW would really like to see some progress on this – perhaps in the form of discounted fares for carers – so that those who require help are not discriminated against. Please let us know your views on this.

Thank you for reading this letter. I look forward to your response.

WOW update

Hello all. I thought you might be interested in some news from the WOW campaign.
 
I had a letter from TfL (addressed to me at WOW – we’re official now!). Following a recent GLA Transport Committee report, they have set up some very promising initiatives. Here’s what they write:
  • Redeveloping bus drivers’ disibility awareness training to be more practical than theory based and involve people with reduced mobility in the training.
  • Improving guidance for dri…vers via the London Buses handbook
  • Introducing a requirement for bus drivers to display identification
  • Introducing more publicity on buses (I think they mean notices)
  • In the future, to introduce a new fleet of buses which have flip-up chairs, to reduce demand for the wheelchair bay.

I am most pleased by these developments – mission part accomplished! Now, we need to ensure that these initiatives are implemented. And we are not quite finished…

I have noticed that the signage asking buggy owners to make space has recently moved to well below eye-level. I am also slightly confused as to why I go free, but my carer has to pay a fare. This seems to negate free travel for anyone who needs a companion. Hopefully we can change that too.

Not a question of morality

The question of the legality of assisted suicide has re-emerged on the political landscape recently with the case of Tony Nicklinson, who used to play rugby with my dad and uncle. Mr Nicklinson has ‘locked-in syndrome’ – he is completely paralysed but his cognitive powers are unimpaired – which he developed following a stroke. He is campaigning for it to be legal for a doctor to help him die without fear of prosecution, seeing as he can not commit suicide himself. This is an extremely emotive subject but it can and should be approached with a healthy mixture of pragmatism and compassion.

With all things, it is best to start at the beginning and work towards the complication. Perhaps one of the most absurd laws in the UK is that suicide is illegal. It is easy to see that this is just stupid, as it is definitely impossible to prosecute someone who is no longer alive. Therefore, despite the law, most of the population has the basic right to end their own lives.

A simple argument follows that severely disabled people should have the same right, especially as their quality of life may be extremely poor (I’ll put in here that the second premise is not derived from the first). People seem to balk here, but I would say this is a logical argument. Politicians, under a convention of Parliament, are allowed to vote independently on such ‘moral’ issues – but ask yourself what qualifies them to do? How many of our predominantly affluent, white, male politicians have a remote ability to empathise with someone who is paralysed? I’ll tell you – none. And if this is the case, shouldn’t the paralysed or terminally ill be allowed to make their own decision? It just makes sense.

The stumbling block, of course, comes from the fear that people in these situations are vulnerable and murder could be concealed as assisted suicide. True. This is why the process should be undertaken by a professional. Not only would that reduce the risk of crime, it would remove the horrendous responsibility from a loved-one. Many people argue that the disabled person may feel that they are a burden on their families and therefore choose to die even if they feel they have a reasonable quality of life. This is also a fair point, but it can be solved with pragmatism. People should have to undergo a counselling program before making a final decision.

Although Mr Nicklinson argues that a doctor should be able to help him, this presents issues. It is a doctor’s job to preserve life – asking them to do the opposite might be very difficult. Therefore, there should be an independent and professional organisation – perhaps modelled on the Swiss Dignitas.

Many of my readers will disagree with my arguments. That is fine. But can you really convince yourself that an able-bodied person deserves more choice than a disabled person? Unless you would like to swap positions with a paralysed man, pause. Think.

WOW gets rolling

This is the letter I wrote back to TfL, who in response to my first letter informed me that everything WOW is campaigning for is in fact already meant to happen. I will keep you updated on any developments.

Thank you for your letter of the 31st January regarding my experience as a wheelchair user on London’s buses. I am pleased that you have in place the procedures which you describe, however I must unfortunately inform you that these are very rarely implemented.
You write that bus drivers are expected to use the PA system to ask passengers occupying the wheelchair space on the bus to make room. This is exactly what WOW thinks is the most appropriate course of action. However, while I appreciate that drivers can not force passengers to move, I think you should be aware that I have never heard this announcement. In my experience, when the wheelchair space is occupied, the driver uses this as an excuse to leave me at the bus stop. This, I am afraid, simply shows that your training scheme is not working. You also write that wheelchair users should be allowed to board first to avoid inconvenience for them and other passengers. However, drivers normally only lower the ramp when everyone else has boarded the bus. Again, your excellent procedures are not being implemented.
To rectify this, WOW would be very pleased to offer our advice on changes that could be made to your training scheme. I feel that these changes could be minor yet very effective, especially if drivers were made more aware of how their actions affect wheelchair users.  As I am sure you are aware, many wheelchair users are unable to drive and the Tube services in London are mostly inaccessible. This means that for many buses are the only way to travel. I would like this to be made clear to drivers and would personally be willing to come and speak of my experiences.
If you feel this is not an option, WOW would be happy to liaise with you to develop a suitable alternative. However, it is clear that something must be done to allow wheelchair users to travel around London in a hassle-free and fair manner. I am sure you agree.
Thank you again for your letter, and I look forward to working with you in the future.

New beginnings

As some of my readers may be aware, I have recently started a campaign against disability-based discrimination. We are called World on Wheels (WOW) and are starting by campaigning for a better London bus service. If you would like to join us, please follow the link to the right of your screen, which will take you to our Facebook page. Alternatively, feel free to comment on any of my posts and I will get back to you.
To give you a flavour of what WOW does, here is the letter I sent today to TfL’s customer services.

Dear Sir/Madam,

I am writing to you as the founder of World on Wheels (WOW). We are a campaign promoting equality and fairness for wheelchair users in all aspects of life.

The experience of wheelchair users on London’s transport network is of great concern to us; and as a wheelchair user myself I am often shocked by the lack of ease in getting around the city. As I am sure you are aware, a pitiful 63 of London’s 270 Tube stations are step-free from entrance to platform. This figure is abysmally low and does not even take into account other factors such as the distance between the platform and the train, which often creates a barrier for wheelchair users.

As a Londoner, I am fully aware that the Tube network is aging and in need of modernisation, regardless of wheelchair access problems. I am also aware that making the remaining Tube stations accessible and adjusting the distance between train and platform is almost technically impossible and would involve sums of money that City Hall simply does not have. Therefore, WOW is not campaigning for a fully accessible Tube network. However, it must surely then be reasonable to expect the bus service to make up for the lack of other options?

Sadly, it is far from fulfilling this role. As I have reached the latter half of my teenage years, I have attempted to use the bus service as a means of increasing my independence and saving money. However, I am constantly disappointed and angered by the way I am treated by your staff. It appears to me that many of your drivers simply do not want to make the effort to lower the ramp and let me on board. I ask you – is it acceptable that I have been left in the rain because of this? WOW is campaigning for new guidelines for drivers that require that a reasonable effort be made to get a wheelchair user on board.

I also often find that drivers are in such a hurry that they do not pull into bus stops properly, so that if they do lower the ramp it is at an awkward angle for me to get up. WOW believes that a little training and understanding would rectify this problem. Other wheelchair users have complained to me that ramps often fail. I can not imagine that maintaining the ramps is that costly, and I suspect a lack of attention rather than funding.

On your website, you clearly state that “If someone in a wheelchair wishes to board, and the wheelchair space is occupied by standing passengers or buggies, standing passengers will be asked to make room.” However, it is left to the wheelchair user to negotiate with other passengers from outside the bus. This is an almost impossible task (please appreciate that many wheelchair users also have problems with communication). WOW is campaigning for more help from drivers to alert other passengers and to ask for space to be made, perhaps in the form of an announcement. This would save wheelchair users much unnecessary anxiety and remove a barrier to the independence of many.

Many thanks for taking the time to read this letter. We look forward to your response.

The ramp on the bus goes up and down?

Topical Creativity is very pleased to introduce its first ever guest writer, Alex Taylor. Alex and I share a few things in life, including wobbly feet and a love of journalism, so it only seemed right that I ask him to contribute here. So without further ado, I give you Alex Taylor:
I am lucky to live in the UK, especially West London. Even given the severity of the current economic crisis, things could be worse – just ask a Greek or Italian. Similarly, as a wheelchair user who has travelled abroad extensively, I have witnessed how comparatively well-equipped our transport network is at dealing with disabled passengers. My friends from elsewhere around Europe are quick to praise the ramp facilities for buses, trains and taxis: ‘we just don’t have this’, they swoon.  The problem is: all too frequently, I don’t either. Just like a child window-shopping in the months before Christmas, TFL and other providers present great facilities but ultimately advertise a final product which flatters to deceive.
I have lost count of how many times I have waited for a bus, only to watch the ramp pitifully grind to a halt without making it to the curb. Moreover, because I use my electric wheelchair when I am out alone, lifting the chair on board is not an option – I simply have to wait for the next bus and hope I win the ramp roulette.  If I am really lucky, I get on the bus fine but watch in horror as the ramp malfunctions when retracting, leaving me stranded on a stationary bus alongside some very angry fellow passengers…all looking for a scapegoat! I dread to think how many buses nationwide have been put out of service in this manner.
Given this the motivations for bus drivers to avoid wheelchair users by failing to stop late at night or during rush hour suddenly become much clearer. Indeed, during my most recent experience, the driver had to resort to frantically kicking the ramp in desperation. Unsurprisingly, it did not work.
In some ways, the situation is typically British. Instead of pursuing a long-term strategy that combines high standards with optimum efficiency, the focus is on getting ‘the job done’. The end result thus becomes superficial, lacking the attention to detail that makes such a huge difference. For instance, I highly doubt that stringent compliance-testing occurs; on some buses, the gradient at which the ramp stops is simply too steep for me to get up safety. Admittedly, the new generation of buses have addressed this fault but it will take many years for the old design to be phased out. If only basic testing had been carried out using a wheelchair, the problem would have been flagged up immediately.
Over the years I have lodged complaints but these are not taken seriously, with an air of complacency in the responses. Ultimately, my aforementioned German friend summed it up when he said: ‘we may not have all these ramps but if we did, we’d make sure they worked’.
Visit Alex’s own great blog at http://www.youknowthescore.net/ and follow him on Twitter @ykts_net