My story

I hardly ever write about my own experiences around being Deaf mainly because having read so many fantastic blogs on the topic I find that I have little to add to the subject which hasn’t already been written about before. But today’s different for me as I want to share an experience I had this week and I hope that by writing this blog it will help me reflect upon how I actually feel about it. You see, I simply don’t know how to feel. One moment I am angry, then I feel pity towards the other person involved, then I feel a sense of disappointment swiftly followed by thinking that I simply shouldn’t allow myself to feel anything about it at all. But this is easier said than done.

What could happen which could cause so much turmoil I hear you ask? Really, it wasn’t anything major, just a chance conversation with a woman outside a shop in London. I was rushing around trying to buy my Secret Santa, stressed because I had forgotten it and needed it before I arrived at work when I practically bumped into a lady. She muttered something which I simply didn’t catch so I explained that I hadn’t heard what she had said and that I am Deaf. Straight away she put her arms out to embrace me, rubbing my arms softly and clearly said. “Oh, you must have been bad in a past life, don’t worry if you are good in this life, God will heal you!”

Wow … I would like to say that I said something to register my discomfort or disagreement with her but I didn’t. I simply stood in shock before walking away. I thought about this conversation and my reaction the whole way to work and am still pondering it now. You see, the comment was not made from a bad place; the lady was clearly trying to be kind. And yet I find it one of the most offensive things that has ever been said to me.

Whilst reflecting on my response to this in bed that evening, a memory popped into my head. I must have been about 9 and was reading my children’s bible. I read about the story about Jesus putting mud on a blind man’s eyes and telling him to go to Siloam and wash and the man was healed and was able to see. I vividly remember thinking ‘why can’t I be healed?’ You need to bear in mind that I was at a time in my life where I was unable to see any of the positives of being deaf and had not formed a positive self-image yet. I used to think that if I had a genie and 3 wishes, my first would be to be able to hear. As I grew up, I realised that my deafness has shaped my experiences and has been integral in making me who I am. It is central to my identity and something which I would never want to change or deny as by doing that, I believe that I would be changing my essence.

During Religious Education classes during my teens I struggled with the idea of healing. I couldn’t understand why Jesus would want to heal people and believed that this was implying that people with disabilities were not perfect as they are. Now I am older I can see that there can be a difference between healing and curing and that this is not an area which is black or white. I can also understand why some people themselves may want to be healed or want their loved ones to be healed.

The idea that I must have been bad in a past life implies that my deafness is a punishment for a sin which personally, I find abhorrent. I googled this before writing my blog and from what I can see the bible appears to be inconsistent on this (although I am the first to acknowledge that I don’t have any deep understanding of the bible as I am not religious). I believe myself that like all religious books there is an element of being open to interpretation and on the whole this is a powerful and positive thing. I have focused on Christianity during this blog simply because this is what I grew up with.

I suppose the conclusion I can come to is that religion is a deeply personal belief and that everyone is entitled to their own beliefs. Who am I to tell the lady her belief’s towards what she sees as my disability is wrong? On the other hand who is she to make assumptions about me? Writing this blog has helped to alleviate my anger. I believe her response towards me was made from simple ignorance. She was unaware of how insensitive she was being. Wouldn’t the world be a better place if we all had a bit more awareness? Which in itself is the reason that I am so passionate about the work we do at Enhance the UK?

Hi everyone. I have been having a long hard think about what my next blog should be about and today I would like to share with you my views about Crohn’s disease being a hidden disability. I’d also like to mention how grateful I am for the great support on my last blog, the comments I received were really heart warming and made me feel like I had achieved something.

Growing up with Crohn’s disease I always get the same comments from people (if ever I chose to tell them about my condition). The point is for people to know that I have a disability I have to tell them. I don’t always tell people and am sure there are lots of people I meet that don’t know I have it. Sometimes I have to point it out for people to understand why I can’t physically do something or why I have to be careful, for example I have to watch what I eat. I can’t just have a McDonalds or a curry without thinking about the consequences to my health. When I do explain my condition I get comments which include,’ Nathan you look like a normal healthy child’ or ‘Nathan you seem so active and willing’ and my personal favourite ‘Nathan you look so well.’

Many of these comments are made because my ‘physical’ image doesn’t reflect what is actually happening inside me and the symptoms I have. Although well-meaning, at times these comments make me feel belittled. This is because they can come across as disbelieving which shows their lack of understanding. What should a person with Crohn’s disease actually look like?

During my school life I constantly have to remind my teachers about my condition; because even I can agree that it can be easy to forget things you don’t see. I hate bringing it up but need to at times. I need to be allowed to leave the class to go to the toilet and this wasn’t always happening leaving me in severe discomfort. A few a weeks ago I managed to get my hands on a toilet pass (just to point out that I am now in my 4th year at the school). The problem is I get to the toilet, need to go…. can’t go and end up spending a long time in there. When I return to the class at times I encounter a disapproving look from the teacher which leaves me nervous and embarrassed. There are loads of other times that I have issues with awareness at school but I will come back to that another time.

The point is that if I had a disability that people could see I wouldn’t have to keep reminding people. I should say that I don’t always tell people about Crohn’s disease. I only share it with people who I think are kind and considerate for obvious reasons – no one wants their condition used against them and obviously I only share personal information with people that I trust – well I guess I can trust you guys! I also don‘t want to be defined by my disability rather than who I am.

My advice to those people who have been told by someone they are talking to that they have Crohn’s disease from personal experience is to be empathetic and not sympathetic. Put yourself in that person’s shoes and respond how you would like to be treated.

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Let me just put this out there, if it was acceptable to leave the house in my pyjamas I would totally be doing that. The pyjama life is what I’m all about. However, as it’s distasteful for a 28 year old woman to wheel around Asda in a Spider-Man onesie, clothes are the next best thing.

I’ve said it before and I’ll say it again, I’m a winter baby so I’m glad the warmer months are over, not that the UK benefitted from a scorching month or even week but still, Autumn is just around the corner and I can happily go back to my chunky knits, bobble hats and biker boots.

I’m not really one to follow suit, I like black clothes, black bags, black shoes, black makes my inner Goth very happy. So, I was extremely pleased when I saw that Gothic Romance would be a fashion trend this A/W. Lace, high-necklines, black (did I mention black is my favourite colour?) vampy, sexiness and berry lipstick – if I could get on my hands and knees I would totally be bowing to the glory of this trend. The downside is long lace dresses or skirts – surely you’re going to freeze to death? I can’t regulate my temperature as it is and I’m always cold wheeling about in my chair so I doubt thin lace is going to be the warmest. I’ve also seen pictures of ruffled cuffs and it looked stunning on the model but put her in a self-propelling wheelchair and ask her not to tangled up in the spokes – she’d have to be a miracle worker. I can’t even wear those cute bobbly gloves without a disaster. And don’t get me started on wheeling in the rain.

There’s also going to be a throwback to the 80s, with shoulder pads, ruffles and lycra – I somehow think I’ll be steering clear of this one. I wouldn’t mind a structured shoulder on a blazer but I don’t think I’ll be going anywhere near lycra. I do suppose lycra would be perfect for a wheelchair user, there is literally no way your clothing could get caught on anything as you’ve had to practically spray-paint your outfit on.

You might also see capes on the high street this Fall, but they certainly won’t be on my back, I’m short and will look like I’m wearing a tent, a tent on wheels, not a good look. The difficult thing about dressing for your wheelchair is working out how clothing will look in a seated position. A cape would look great on a non-wheelchair user, it’d sit at the hip and they’d look like they walked off a Parisian catwalk; on a wheelchair user, it’d need to be tucked into the sides of the chair as not to get twisted up in the wheels and then as you’re wheeling yourself, the sides would unfurl and it’d be a whole lot of messing. If you take away one word of advice from this post – don’t wear a cape if you’re a wheelchair user. I’m envisioning it and it’s not pretty.

Lucky for me knitted dresses, cardigans and jumpers will always be a staple in the colder months. I’m a fan of a hooded Parka coat, a long one that can be tucked under my bum and cause no catastrophic entangling moments whilst keeping me warm, a chunky scarf that isn’t ridiculously long and shoved inside my coat, with straight/skinny jeans (you can never go wrong, I’ll sometimes wear tights underneath for extra warmth), and ankle boots. I think I’ll probably invest in a cute blanket this year as it gets really cold sitting in a wheelchair, and you can never have too many hats or gloves. I recommend leather gloves with a thermal lining, that way if you are caught out in the rain, your woolly gloves won’t soak up the rain and freeze your hands, the rain will slide right off the leather. I’ve recently invested in a fedora because I’m a fan of a statement hat, the only downside is wind, I can’t push myself and hold onto my hat unless I enjoy going round in circles, which I don’t. Chunky bobble hats, knitted beanies and the like will always be in fashion and keep your head warm. I tend to wear them pulled down over my ears and the hood of my coat over the top.

As a wheelchair user, there’s certain items of clothing that are simply a no-go area, no matter how pretty they are or how amazing you’d look, there’s absolutely no way you could pull off fringed clothing – well, you could pull it off, but you’d be pulling it off when it got caught in your wheels and ripped from your body. That wouldn’t look good, now would it?

You can always keep up with the latest fashion trend as long as you consider how the clothing will sit/fit once you’re in your chair. You don’t want to pay a fortune for that gorgeous cape but wear it in your wheelchair and rip a hole in it.

And remember, you’re not moving about as much so it’s always colder when in a wheelchair, stay wrapped up!

What will you be wearing this Autumn/Winter?

My name is Liane and I would like to share my story and experiences with you. I was diagnosed with my hearing loss in the Summer of 2014. I first noticed I was having issues with my hearing at work. I was working as a trainee sign language interpreter at the time and discovered I was misinterpreting in some situations, luckily for my clients and myself I did not misinterpret anything of a critical nature!

If I’m honest I was in denial for a while about my hearing loss, but due to my job it was imperative for me to get my hearing checked. It came as no great surprise when I was told I had a mild hearing loss and needed hearing aids. I felt it was a little ironic considering what my day job was, but it also meant I had to make a crucial decision, continue with my training to become a fully qualified interpreter or change career paths. I had to weigh up the cost of my training and if the work I would be able to cope with warranted completing my training. I decided to put training on hold.

I currently work as a Communication Support Worker at a college. As I work within a small class, and sit at the front near the tutor, I manage most of the time. However, if students start talking across each other, again, I am in a situation where I am unable to hear effectively and have to ask the tutor to ask the students to speak one at a time. I also work as a Community Support Worker to Deaf adults within the community, as well as run a part-time business, but I still have not made a decision long term on my career path. This will depend on if my hearing deteriorates or remains the same.

I was given my hearing aids at the end of November 2014. When the audiologist switched them on, she asked if I noticed the difference (we were in a sound proof room with just four people). I said no, but then she switched them off and WOW yes, I noticed the difference!

It was very uncomfortable at first, not only having the tube inside my ear but also having the aid over my ear. For the first couple of weeks my ears were very sore and I was glad to take them out at the end of the day. I was told that it would take me approximately eight weeks to really get used to them. I suffered with bad headaches for the first few weeks as the amplified sounds became too much at times. I would often take my aids out as soon as I got home, after all, having four kids amplified was too much after a day at work! The most irritating sound that took me a while to get used to was my hearing my hair! Sounds bizarre I know, but my hair brushing against my coat was so loud and really took some getting used to!

It has taken time to get used to having hearing aids, not only for me but also for my children. My eldest daughter said to me, please don’t wear your hearing aids when you take me to school, I don’t want people knowing you’re deaf. I found her comment a little upsetting but more so surprising, as through my work and social life I have met and made friends with many deaf people. In fact, one of my best friends is deaf and my children have been around deaf people for many years. Her comment was a bit of a shock.

My children, even though they are deaf aware, have struggled to cope with my hearing loss as I often ask them to repeat things and they get frustrated with me, or vice versa. One common difficulty is in the evening if we are watching TV, the kids quite often talk to one another and I will miss things that have been said in the programme. I have now taken to watching TV with subtitles. We are all slowly getting used to it and are adapting, after all we have to.

 Even with hearing aids, I still struggle in lots of ways. If the environment is noisy I  cannot hear properly and sometimes it all becomes a bit too much and gives me a  headache. I also really find it difficult to listen to voicemail messages, especially  names, as these are not as clear as when speaking to someone face to face or directly  on the phone when you can ask them to repeat something if you haven’t heard it  properly. Although I can still hear on the phone, it has to be in a quiet environment  and hands free in my car is an issue. In fact a funny thing happened just a couple of  weeks ago when using this. I was on my way to my brothers, he rung me and asked  me to get him some Sudacream, however when I arrived at his and handed it to him,  he looked confused and said “What do I want that for?” I said “You asked for it!” he s  said “No I asked for Superglue!!” We all then had a good laugh about it!

One final thing that I am struggling to deal with is how I am seen as a person. I work within the Deaf community and Deaf BSL users are proud to be Deaf as they are part of a community and have their own culture. So when I meet new Deaf people, I sometimes get asked, are you Deaf or hearing? Well, I’m not Deaf in the sense they are, but I’m no longer fully hearing, so I guess to put a “label” on me I am hard of hearing. Also the other thing is filling in forms, quite often they have a question that says, “Are you or do you see yourself as disabled?” Personally, no I don’t but I do struggle in certain situations, so my question would be, “Do you see me as disabled?”

Taking sides in an argument between ‘professional’ Celeb and glamour model Katie Price and semi-professional troublemaker and glamour nothing Katie Hopkins is a bit like saying whether you prefer eating you own earwax or someone else’s. No-one should be that interested in your answer and which ever camp you place yourself in does nothing to flatter how people see you.

Normally I wouldn’t be in the slightest bit interested in such a spat but when it erupted in the Celebrity Big Brother house recently the subject matter this debate between these two intellectual behemoths compelled me to chip in. I don’t watch said programme (I used to but tapped out around the time of the infamous George Galloway cat episode) so all my information on what happened is received second hand via various web sites and newspaper articles but from what I gather the issue is this. Hopkins laid into Price for not paying the £1,000-a-day travel costs for the transport and care to take her severely disabled son Harvey to and from his special school. Price defended herself saying that it was the Local Authority’s responsibility to pick up the costs.

Now, I’m far from being ‘The Pricey’s’ number one fan and there are a lot of issues about how she lives her life and makes her money that I would happily criticise her for, including the fact that she is the ‘author’ of a range of books that were written by a ghost-writer. So I’m as shocked as anyone to find myself being whole heartedly on her side. Katie Price has done nothing illegal by claiming this help. We are fortunate enough to live in a country where every child, regardless of social standing, gender, or disability has a right to access a suitable education provided by the government, it is one of the things we should be proud of. Katie is totally within her rights to expect the tax-payer to foot the bill to cater for her child having access to an appropriate school.

Hopkin’s argument is that unlike a lot of families with disabled children Price has more than adequate income to fund her son’s transport needs out of her multi-million pound empire. While it is hard to argue with this, I do wonder who would truly benefit if Price agreed to take on the bill out of her own pocket. Would the yearly saving really go towards more deserving families or, as I suspect, would it be just another handy saving made by whatever council who formally paid it to add towards the growing nationwide endeavour by the coalition government to cut spending on disability provision?

The problem Katie Hopkins seems to have (among many others) is an inability to tell the difference between necessity and luxury. Yes, the fortune Price has built on the back of her image has no doubt given her choices and opportunities that the rest of us can only dream of and the chance to give her kids all the privileges any parent would want for their children. But her son’s attendance at a school that deals with his complex needs isn’t an unnecessary indulgence; it is a vital method of dealing with his impairment in the most suitable environment. It would be ridiculous to suggest he could attend a main-stream school. This is an issue that needles me every time I hear parents complain about catchment areas and getting their little darlings into the school with the best OFSTED report. If your child is able-bodied you have no idea what it means to have a limited choice in your son or daughter’s education. When you have a disabled child, you are more or less told school X is the nearest/cheapest one to deal with your child’s disability so that’s where they’re going. When I was 13, my special school told my parents to look for somewhere else because I was a lot more academic than the other children they catered for and I wouldn’t reach my full ability if I stayed there. None of my local secondary schools would take me and I ended up having to take a 3 hour daily round trip to a special school that allowed me to sit my GCSEs. Maybe if suitable education for disabled children wasn’t such a rarity and special schools weren’t being shut down left, right and centre then local authorities wouldn’t have such massive travel costs for children such as Harvey.

But what really annoys me is not what Hopkins said but what her comments imply. Someone once told me that the major challenge faced by disabled people in modern Britain was that we as a community see disability as a problem to be dealt with by the sufferer themselves and their family, and not society at large. Your average person is happy enough to feel sympathy for someone with a disability, more than willing to drop what they can afford into a charity bucket now and again, as long as helping disabled people isn’t costing them in money or convenience more than they’re willing to afford. What Katie Hopkins is really saying is, ‘I’m not happy that the taxes I pay are being used towards aiding a disabled child when their parent is capable of doing it themselves. He’s your son, his disability is your problem.’

But Katie Price, for all the mud that is slung at her, never decided to have a disabled child. No parent ever enters into parenthood consciously making that choice. It is one of the very unfortunate things that happens and when it does, no matter if you’re a billionaire or a beggar, you do what you can to best meet the trials it brings. But it shouldn’t be wholly your responsibility. Every child grows up to become a member of society and it is the responsibility of any civilised community to take care of their most vulnerable members.

It is so easy to pour scorn on Katie Price, the media does it all the time and some of it she does bring on herself. But when you add not paying for her child’s transport costs to the list of accusations you’ve got to ask what messages it sends out about other families of disabled children and how we view our responsibility towards them. The only thing that gives me hope in this situation is that Hopkins is well known for making inflammatory comments such as this about just about any subject and most people possess the intelligence to know that she does it to inflate her own twisted ego. Hopefully, like the majority of bullies, if we ignore her she will eventually get bored and go away.

First of all, health, happiness and best wishes for 2015 to everyone reading my blog. I hope you all had as good festive season as I did, eating, drinking and being merry. I’ve been thinking a lot about diet and weight issues over my Christmas break, partly because like so many people I have overindulged and intend to slim down now January’s here, but mainly because of a news story brought to my attention on the Twitter account of Chailey Heritage Enterprise Centre, the social firm I work for.

According to BBC News, a man in Denmark has successfully sued for wrongful dismissal under the EU’s disability discrimination legislation because he was sacked from his job as a child minder for being too obese. The judge said that although obesity wasn’t itself a disability ‘if a person has a long ­term impairment because of their obesity, they would be protected by disability legislation.’

This got me thinking about a very basis question that I hadn’t thought to ask myself because I assumed the answer was obvious. What do we class as a disability? To me, the definition of disability is wide, but whatever kind of impairment you have all disabled people have one thing in common. Whether through birth, accident or sheer genetic fluke something has happened that has stopped your body and/or brain working to its full capacity. For reasons beyond your control, your physical, mental or emotional state falls below what is seen as ‘normal.’ Like race, sexuality, gender or ethnicity it isn’t a choice you make and you shouldn’t be punished for it in any way. But in the case of obesity, that state has been achieved for the majority of people by direct and continued action, e.g eating too much and exercising too little.

Let me put it another way. Obesity can be caused by having a disability, disability can cause people to be obese but, as the judge in this case said, obesity is not a disability. There are certain instances where individuals cannot control their weight gain. Disabilities such as Down’s Syndrome can make sufferers more prone to storing excess fat while others such as Prader Willi Syndrome find it very hard to control their appetites. Even having physical disability such as mine (Cerebral Palsy) can make it very difficult to exercise and stay fit and healthy. But whatever condition you do or do not have there is nearly always something you or those helping you can do to help maintain a healthy weight. There has always got to be some level of responsibility for your own diet. It’s a simple mathematical equation, eating less plus exercising more equals weight loss.

Look, I don’t want to give the wrong idea about me. I’m not Katie Hopkins (thank God) I’m really not anti-­fat or anti-­obese. I think it’s awful that the government tell people what they should eat and I’m not going to lecture anyone because they’re not a size 10. Large women (and men) can be as beautiful, sexy, clever, successful and motivated as anyone else. If you’re happy to say ‘I like food and hate the gym,’ I say good for you. If you want to lose weight by diet or surgery, I’m behind that too. It’s your body, your life, do with it what you want. All I ask is that people are responsible for their life­ choices and don’t blame them on something that is beyond their control.

I speak from experience. I have battled with my weight for my entire life. As a child, I was painfully underweight and was constantly being rushed into A&E for mysterious bouts of sickness during which I couldn’t even keep down water. Due to this my parents were encouraged to ‘build me up’ by feeding me anything I wanted. This meant by the time I was 18 I had long got over my childhood ill­ health but was still eating like a horse.

My relationship with food now is simple. I love it. I can’t express in words my passion for eating. Anything that’s fat or sugar laden and bad for me. I never leave my plate empty. That is the reason I have spent the past 15 years or so bouncing between a size 10 and a size 18. At my largest all that I could wear were grey jogging bottoms that my Mum told me made me look like a baby elephant from behind. My point is that I know what it’s like to be overweight. It’s true that having a disability that limits my movements makes it harder for me to exercise but I do try to stay as active as I can via cycling and weight training. I also try (and mostly fail) to eat a healthy diet. It would be wrong of me to sit back and blame Cerebral Palsy for me being fat. I eat too much, nothing more to it.

The human being I think is, by nature, a lazy creature. We like the easy route. It is very easy to think up excuses as to why we pile on the pounds. It isn’t our fault. It’s in our genes, we can’t afford to buy fresh, healthy food, we’re too busy, we’re too tired, we overeat to fulfil some psychological hole. I used some of these excuses a hundred times myself. But at the end of the day they are all smoke screens we use to deny the truth. Weight is something we have power over if we want to. If you’re overweight and don’t do anything about it, that’s your choice, I won’t have a go at you. Just have the honesty to admit it.

My problem is that once we link disability with obesity it will just add a very convenient argument to the list of excuses for why people can’t lose weight. It won’t matter that we will be told that obesity is a cause or a symptom and not an impairment in itself, the link will have already been made. If you’re suffering from joint pain, limited mobility, diabetes or depression who can blame you for reaching for another doughnut to make yourself feel a bit better about the problems in your life? Rulings like this aren’t making life easier for people who truly want to lose weight. At the end of the day, the one thing that stops people getting slim and being healthy isn’t too much food, it’s not taking responsibility for yourself. Weight shouldn’t be a disability issue, it should be an issue for everyone to address for themselves, not something that is monitored by the government or EU.