Arts Council Withdrawal of Funding Proves Those With Disabilities Are Still Third Class Citizens

Whilst societal attitudes towards disabilities are improving, there is still a long way to go, and this has been proven in spades this week.Touch Trust is a charity which has been running since 1996, and has been a safe and treasured haven for those with disabilities for the past 19 years. This week, the Arts Council came to the decision that they were moving away from supporting individuals with special needs, and withdrew the funding for the one place that these people can go to and be treated like equals.

About Touch Trust

Touch Trust provides life changing therapy to individuals with conditions such as Autistic Spectrum Disorder as well as those who are unable to see, hear or speak. Using therapy which revolves around touch, the session workers are able to encourage the guests to use their senses which has an amazing response. Using music vibrations allows the deaf to experience music and the encouragement to interact with different materials awakens all sorts of wonderful feelings in the individuals that they would not have been exposed to at home.

Touch Trust provides both one to one therapy as well as group sessions to all who seek to take a trip there once a week and have fun. This has led to friendships being built, calming of violent behaviour and has worked wonders for improving social skills.

Why is Touch Trust so Important?

In recent years, there has been a gradual increase in the levels of acceptance when it comes to those with disabilities. However, there are still very few opportunities for those with disorders such as severe ASD to engage in activities outside of their homes in an environment which has been specifically designed for them. Even then, these spaces are usually focused at improving the quality of life for children diagnosed with such disorders as opposed to adults. Touch Trust has devoted every inch of its space to ensuring that the environment is friendly and enriching in order to ensure that the guests are being constantly stimulated and kept comfortable at all times.

Many of the individuals who attend rely on Touch Trust as part of their weekly routine – it is a safe zone for them, where they can get away from carers who are with them 24/7 – and without it there could be huge consequences for the mental health of all those who frequent the centre. If Touch Trust is forced to close they will be losing the one place that they can go to free themselves from the constraints of their conditions, and will also be losing those that they consider friends.

How Important is Touch Trust for the Families?

Looking after individuals with severe disabilities can be incredibly time consuming and draining on the body. Every waking moment for many of these carers is devoted to ensuring that the individual in their care is looked after and cared for to the fullest extent of their capacity. This often means that jobs have to be sacrificed, and a lot of time is taken away from others in their families, be it children, spouses etc. Touch Trust provides families with the opportunity to take a break to focus on themselves – to buy the food they need for the week, to take their other children to lunch or the Cinema (where they can focus solely on them and give them the much needed attention that they also require), or even to get a haircut. All basic tasks that families without these constraints take for granted.

How Can I Donate?

You can donate to keep Touch Trust open here. Every donation is important and will help to ensure that the staff are able to continue doing the life changing work that they do. Even a minimal amount will go such a long way and could mean the difference between saving this charity or losing it.

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An Open Letter to Katie Hopkins; the Know-it-all who Knows Nothing

Dear Katie,

I became aware of your tweets regarding your opinions on Depression and Alzheimer’s earlier this week when I was made aware of your tweets via a Facebook and Twitter feed which had virtually exploded with outrage at your insensitive, bigoted and frankly quite disgusting comments regarding two of the largest issues of mental health which are affecting people in this country on a daily basis. Usually, I would be quietly outraged about a number of your comments, as your controversial nonsense is expected – you’re the ‘go to girl’ for a heartless and insensitive comment which demeans the very existence of many people not just in the UK, but across the world. However, as an individual who has been suffering with depression for years and recently lost a family member after a decade long battle with Alzheimers, I felt that it was time to speak up. Firstly, I’ll address the comments on depression, and then those on Alzheimers.

Depression is not a ‘holy grail of illnesses’ or ‘the passport to self-obsession’ as you have so crudely alluded on your Twitter feed. It’s isolating, lonely and, contra your super weird opinion that people ‘want depression’, sufferers would give anything for the end. Be that the end of the illness or, in some sadly extreme cases, the end of their lives. I used to be a bubbly, happy individual who had the whole world at her feet and couldn’t wait to experience the life that I had ahead of me. I wanted to experience it all and I vowed to make the most of every single day of my life that I had to live. But then I was hit by a black ball hurtling at me at such speed that I couldn’t dodge it. It hit me. I couldn’t breathe, felt like I was drowning in blackness and I was fighting to push the blackness away – to get it out of me. When I eventually thought I had broken free I was an entirely different person, the real me locked inside my head behind bars screaming to be let free.

Depression is not easy; it’s bloody hard work and every single day is a struggle to get through. Every single morning getting up is a battle with the covers. Not as a result of laziness because you want ‘ten more minutes’, but as a result of the fact that there is a hard wired belief that there is nothing worth getting up for, and you can’t face going through another day of forcing on a smile to convince others that you’re okay – that you’re normal. You’re afraid that the mask will slip, that people will see you for the self-loathing, unbelievably distraught individual that spends hours every single day fighting back the urge to give into the black hole of sadness in her stomach and cry her heart out until the tears won’t come any more. You don’t cry about anything in particular, but for some reason that black hole is constantly there, threatening to expose you for what you truly are; depressed.

Your eating habits are thrown out of sync. You binge regularly, because food all of a sudden is capable of giving you that emotional nourishment that you feel you are lacking from everyone else. We know that in reality it doesn’t work, but that need to feel connected to something is sometimes the only thing which is preventing dark desires from taking over, such as the desire to cut your wrists, swallow that entire bottle of paracetamol that is in the cupboard, or curl up into a ball on the bathroom floor and let the tears flow and flow until you either black out or someone needs to get ready. You then find yourself too unhappy to eat. You don’t feel worthy of the nourishment that the vitamins will give to your body. You’re too weak to move from the spot you’re lying or sitting in to go to the kitchen in search of something to feed yourself, and even if you were capable it would be a pointless exercise as it would be bland and tasteless, followed by a feeling of nausea as the bite you’ve just taken hits your stomach and almost forces your gag reflex into action.

You lose all interest in your appearance. You know you’ve gained weight because of the emotional eating, and that just makes you hate yourself even more. You buy and wear clothes that hide the damage you have done to yourself as a result of overeating so that nobody will look at your appearance in any way which can be perceived as positive – you don’t deserve it, and if you were wearing something more form fitting there is the fear of rejection through hideous comments which prevents you from doing so. You want to be invisible, because when you’re invisible you don’t have to work hard to hide the anguish which is eating you away inside. You stop wearing makeup on a regular basis, despite the fact that you might never have left the house without it. If you do wear it, it’s just enough to cover the signs of maltreatment – the spots which have appeared as a result of the unhealthy oily food, the blemishes which give away the tears which have been shed and the dry, sallow skin which gives away the fact that you’ve barely slept. Your hair is shoved back into a mere ponytail. You don’t even bother to brush it when it’s been washed. You eventually stop caring about the weight gain, and give in to the pity cycle which you have resigned yourself to the notion of being the puppeteer of your life.

You push those that you love away because you can’t bear to admit to them that you’re feeling so hopeless and unimportant. Your moods fluctuate as the veneer begins to crack behind closed doors, and you spend as little time around family as you possibly can. After all, they can see you for who you truly are because they have loved you for your entire life. There is no hiding from them. You flare up with anger when you’ve been challenged, all of those feelings which you have bottled up inside spilling out into what has now become an emotional battlefield. You try to reign it back, but you can’t. You end relationships because you don’t feel you can give your partner what they deserve, despite the fact that they’ve held you in their arms and let you cry just because you needed to.

That was my reality for depression, and I wouldn’t wish that on anybody, and anybody who would want to feel like all is lost and be labelled as such is clearly insane. They’re certainly not those who wish to be seen as fashionable or ‘In’. It’s taken me a long time to try and pull myself out, and I’m only just beginning to see life as being one which is worth enjoying and taking advantage of. But I’m lucky – I’m not one of those who are clinically depressed and as such are unlikely ever to find a way to bring themselves out of the endless cycle of despair which is controlling every single decision that they are making in their lives. Not everyone has the same munchausens-esque approach to their lives as you do. As someone who is quite happy to be on the receiving end of bad press and hateful comments, you quite clearly have some serious mental health issues of your own
regarding attention seeking and the need to comment on EVERYTHING.

Just because there has been a 500% increase in people being diagnosed with the illness (as you say) doesn’t mean that it’s being treated as a fashionable condition which doctors are keen to label people with. It’s because campaigns raising awareness of the illness are leading to people who had previously been suffering in silence seeking help. They don’t feel ashamed or afraid any more as society no longer shuns people who have mental health problems in the way that it maybe did twenty or thirty years ago. There is no need to feel ashamed of admitting that you need help, and there is certainly none in being yourself be that a happy, fulfilled individual or one who feels like they have absolutely nothing in the world. After all, there’s an increase in the number of people being diagnosed with early onset cancer, but there is no way that you would even consider of them seeking attention for wanting a ‘fashionable’ illness because that’s something you can’t argue with. It’s there in black and white because it’s a disease that you can see whereas depression isn’t. But just because you can’t see it doesn’t make it less real, life threatening or important. And demeaning people who are struggling with this diagnosis in the way that you have is appalling and for those who are at breaking point, could prompt a dangerous behaviour. Be it harm to themselves or harm to someone else.

As for the Alzheimers comments, there is very little to say on that subject except the fact that the utter drivel which you spouted on that topic was more toxic than any known substance on this planet. How you can so off handedly state that the sufferers should be euthanised, to paraphrase your comments, is utterly inhumane and so hurtful to those who have to watch their parents, grandparents and spouses deteriorate on a daily basis. Because they aren’t entirely gone. You lose them slowly, but these patients never lose their reason for living. My grandmother was diagnosed ten years ago, and passed away last month after an incredibly gruelling journey of regression to childhood. But despite the fact that she forgot where she was, that her husband had died and that she had no recollection of any events which had taken place over the past ten years and much of the period before that, she always knew that she had family who loved her. She talked about us, albeit fleetingly. Every time we would visit her at the care home she was living in, she would have no idea who we were for much of the time, but then a glimmer of recognition would flit across her eye, and for the brief moments that she did recognise her grandchildren and daughter, she was ecstatically happy. Those moments were worth all the hardship for her, and for us. To say that an Alzheimers patient is unaware that they are living is a gross misunderstanding of the illness and its progression.

The decision not to look after her at our home was also one which was taken out of our hands. As a family which is forced to move almost annually as a result of factors outside of our control, it would not be fair to have carted her around with us. It would have been unfair to take her out of an environment which she knew and recognised, and had been so happy in for most of her life. The quality of care that she received at the home she was a resident in was also beyond the standard of anything which she could have received if we had looked after her. She had constant companionship, nurses and doctors who saw to her every health need, she received different types of therapy aimed at slowing the disease and she had people to talk to about things which had occurred in her past which we would have no understanding of. It was the right choice for her, and every decision which we made for her care, was made solely with her in mind. That does not make us bad people and it certainly doesn’t mean that we should have given up on her.

So to finish, it would be my advice to you to either inform yourself fully of everything which you are quite happy to comment. A majority of the issues you comment on, you are so ill informed on that you are in danger of spreading poisonous and dangerous ideas which have the potential to destroy what is left of the humane society that we live in today. They can lead to people harming themselves or others, while you sit safely behind your keyboard or your phone mindlessly talking crap. Just because you have an opinion on something does not make it a truth which people have to ‘get over’ or ‘deal with’. It makes you a sad, pathetic individual who feels the need to belittle others. A sad, pathetic individual who is, actually, wrong when discussing a large number of the ‘truths’ she claims to speak. How someone like you managed to become a ‘voice of the people’ in a newspaper is beyond my comprehension as you are clearly very out of touch. So out of touch, in fact, that many people are wishing that you would in fact be euthanised sooner rather than later so that it puts an end to your idiocy. Everyone has the right to life, regardless of which world they find themselves living in. Be it a regressed world, a depressed world, or a joyful one. One thing is for sure though – you are in no position to judge anyone for the way their life is lived. But before you attempt to apply that yourself, you opened yourself up to judgement the moment you decided to write such heartless and hateful words.

Sincerely,

Someone who knows what they’re talking about

Video

What Happens When you Substitute Records for Tree Rings

traubeck.com

traubeck.com

If a tree falls in the woods, and there’s nobody around to hear it, does it still make a sound?

This is one of those riddles which kids have been telling each other for years in an attempt to both confuse people and appear smarter than their friends by seemingly having all the answers. As for me, I have absolutely no idea, but I do know what happens when you substitute records for tree rings on a record player. And yes, they do make a sound.

Bartholomaus Traubeck is the individual who first came up with the idea of attempting to translate tree ring data into music by way of using a special record player which uses light sensors to read not only the rings, but also the colour of the wood and the texture. This data is then translated using a special algorithm which, in my opinion, has resulted in breathtakingly haunting music being created. I don’t just appreciate it as a musician either – I appreciate it as a person.

For a taster of the album, entitled Years which Traubeck has put together, you can listen below.

Alternatively, if you’re like me and that 2 minutes and 14 seconds was far too short, you can listen to the entire album below:

 

The Ice Bucket Challenge – Why I’m Not Doing It

The Ice Bucket Challenge is the latest fundraising craze which has taken the world by storm, following in the footsteps of the ‘No Makeup Selfie’ campaign which aimed to raise funds to find a cure for breast cancer. It involves standing still, while someone else tips a bucket of iced water over your head. People are nominated, the video is uploaded to Facebook and the whole cycle starts again.

The Ice Bucket Challenge is designed to raise money for a motor neurone disease called ALS or, Amyotrophic Lateral Sclerosis. The disease sees sufferers plagued by muscle spasticity, rapid and progressive weakness due to muscle atrophy (death), and finally an inability to speak, swallow or breathe without medical intervention. The life expectancy of an individual diagnosed with ALS is a shockingly short 2-5 years, depending on the severity and progressive pattern of the disease.

I was first made aware of the disease after being shown this video on the Huffington Post which shows Anthony Carbajal, an ALS sufferer, comically perform the Ice Bucket Challenge before then shocking everyone with the raw, bare facts and emotions surrounding his diagnosis five months previously. I was in absolute tears when I watched this for the first time, physically distraught that this young man had been handed a death sentence which cruelly forced him to watch his own mother die in the same manner which would be his own fate. He literally stares death in the face every day.

Whilst Anthony’s video has managed to evoke an overwhelming emotional response from me, I have decided that unlike him, I will not be participating in the challenge. Instead, I have pledged what I can afford to the charity. Unfortunately, it’s only £15. If I had more to give, you can rest assured I would. I’ve also shared Anthony’s challenge on my news feed because I feel his story says more than dumping water over my head ever could. This donation and sharing, however, has not sat well with many of my Facebook friends. I’ve been accused of donating money because I “don’t care enough to do something to my own body”, been essentially told that I am less than human for not doing the video, and generally made to feel like a horrible person.

My decision not to participate doesn’t stem from a fear of dumping ice cold water over my head, nor is it a demonstrative factor showing that I ‘don’t care,’ therefore branding me a monster. I’ve chosen not to do this because of personal factors in my own life at the moment, and my own more than likely controversial opinions. I don’t want to broadcast them online, because I believe everyone is entitled to their own privacy. However, I feel like I have been pushed far enough to have to. Whether you find these reasons legitimate enough or not, they are my reasons and I stand by them.

The first reason is that I find nothing particularly brave or fascinating about dumping a bucket of cold water over the top of your head. I personally think of it as more of a cry for attention. A sort of “look at me, I’m doing something for charity and I look like such an idiot ha ha” thing, if you will. Charity shouldn’t be forced. It should come from somewhere inside you which makes you want to donate money because you care, and not because you don’t want to wuss out in front of your mates. That’s all these videos are to me, and I’m sorry if I offend anyone who has done it and feels differently. They’re videos which exploit the vain side of humanity and appeal to the human need to show off to the whole entire world. They aren’t about the condition, or awareness – although people will pretend they are – they’re about the individual, and the donations are just a byproduct of the need for attention. This is further highlighted by the fact that absolutely none of the videos I’ve seen my friends do have touched upon what ALS actually is, or even told people how and where to donate. Concern appears to lie with self promotion as opposed to increased awareness.

The second is that people have ‘put a price’ on their challenge through the purchase of ice, water and all the other little accoutrements which have been used to create their ice bucket minute of fame. Personally, I think it’s wrong; especially when you consider that the money they’ve wasted gearing up for this could instead have been donated directly to the ALS charity. The extra £1.50 from every bag of ice from the UK challengers could have gone a long way to almost increasing the total raised by the individuals in the country by up to 60%. That’s huge, and totally worthwhile.

The third is that I believe it trivialises an absolutely horrific and debilitating illness by making a mockery out of it. It desensitises those who are watching it and completely detaches individuals from the gravity and importance of their donations. They don’t see the impact of the illness on the sufferers, and they don’t see the good that their donations are doing. Instead, they see people running around in circles, screaming their heads off because they got a little bit cold. How does this possibly benefit the ALS community and their families, and how does it raise awareness?

The fourth reason is that despite the huge number of celebrities involved, and the number of people who claim to have donated, the total amount raised for charity stands at a mere $31 million. You’d think that people would have learned to dig a little deeper, especially those with more money at their disposal. If you want to be seen to care about something, you shouldn’t do it with a bucket. You should stick your hand in your pocket and prove it by helping someone who desperately needs it. I’m not flash with cash, but I still feel moved enough to reach into my pocket and give the charity my last £15. The amount of self-promotion from these people we are supposed to admire is also shocking when you consider the amount if money they make off the back of it. Take Hayden Panettiere for instance. She used the challenge as a platform to announce her pregnancy. It’s morally reprehensible.

The fifth reason is that I’ve come under so much fire for not taking part in the challenge, by people who aren’t even friends, that I am now more determined than ever not to do it. They don’t seem to understand that I should be allowed to donate anonymously, as my money is just as good as everyone else’s. Just because I haven’t tipped a bucket of ice over my head doesn’t exclude me from having the same rights to donate money as the individuals that did. I’m of the firm belief that a majority of the anger on their part stems from the misguided perception that I ‘owe’ them because they did it first and ‘chose me.’ Whist they fail to see is that I refuse to promote myself and other individuals through social media off the back of individuals who are seriously, seriously ill.

So there you have it; five of the reasons why I won’t be doing the ice bucket challenge. And before people start accusing me of being heartless because I can’t imagine what it’s like for the families or those diagnosed, I probably have a better understanding of how they feel and how the donations can help than a majority of the people who have taken part. My sister Alex wad diagnosed with Atypical Secondary Addison’s Disease in 2010 when she was 17 years old. The disease originates in the pituitary gland and is usually caused by tumours. It’s life threatening. In Alex’s case she lives in fear of having a seizure she may not recover from, no ability to respond when she’s scared, she has a less than effective immune system, and has to inject herself in the stomach every day because her growth hormone is also failing. Her weight fluctuates, and she has the psychological struggles of someone who pretty much lives every single day with a death sentence hanging over their head. It’s why I’m even more adamant that it’s donations, calls to action and awareness which will help these people.

If anyone wants to donate to help those living with ALS, please follow the link here

Alternatively, if any of you feel like donating to the Pituitary Foundation, you can find their page here.