Skip to main content
search
Feb 18
Claire Holland Head of Training

Behind the Scenes at Enhance: Claire Holland, Head of Training

By Business, Disability, My story, News One Comment

 

When Jennie (the CEO for Enhance the UK) asked me if I would like to write a blog, I was a tad hesitant to say the least. What I currently know about the blogosphere (Google is my friend) can be written on a postage stamp. What can I write about, I thought and then it dawned on me. I could blog about my experiences working with Enhance the UK.

I am in a lucky position to work on a freelance basis as the Head of Training for Enhance the UK, a charity I am passionate about. Not many people are able to say that they look forward to going to work and that no two days are the same. Furthermore, without wishing to sound gushy, I genuinely believe that as a collective everyone who is involved with Enhance makes a difference. That’s not to say that it’s all sweetness and light; some days can be frustrating and you feel like you are taking one step forward and two steps back.

So what do I do for Enhance? Good question … a bit of all sorts really. I am one of the Disability and Communication Awareness trainers. I mostly provide the communication element as I am profoundly deaf and wear a cochlear implant. I love delivering the training as it’s always good fun. PowerPoint is a swear word at Enhance and is banished. The training is always really interactive and tailored to meet the needs of the delegates so no two days are ever the same. This keeps me on my toes. It is really rewarding to see the change throughout the day to the group of people who enter the training room at the beginning. They often start looking anxious and unsure of exactly what to say as they trudge through the minefield of what disability related language to use so that they don’t offend. By the end of the day they always look more relaxed and that fearful look on their faces has disappeared. That to me is a job well done. I wholeheartedly believe that removing the fear factor around disability is essential.

I also attend schools and deliver disability workshops to children in primary and secondary schools. Although it’s hard work dealing with children aged 4 and upwards all day this is one of my favourite elements of working with Enhance. Children are naturally inquisitive about disability and their curiosity is crushed at a young age by adults who tell them not to ask questions or stare. I have lost count of the number of times that a child has poked my implant asking what it is or asked why I am waving my hands around funnily in the air. The response of the parent is always along the lines of turning red with embarrassment, looking like they want the ground to swallow them up and shushing their child whilst apologising to me. I think this is a crying shame. Children should be able to learn about disability in an open and safe environment and this is what we achieve with Enhance. Talking about disability, playing games related to disability and answering questions allows children to learn positive messages about disability which we hope they will take with them into adulthood.

It’s not all fun training days though. I do a lot of putting pen to paper. I can often be found writing letters to companies, writing policies and strategies and filling in grant application forms to name a few. Anyway that’s a little about me and the work that I do. Look out for my next update as to what’s been happening behind the scenes at Enhance the UK.

Feb 14
Jennie Williams

Disability and dating faux pas

By Disability, Lifestyle, The Love Lounge No Comments

My name is Jennie Williams, I am the Director and Founder of user led disability charity Enhance the UK, and ​​I have degenerative hearing loss​. My hearing loss is believed to be linked to a heart condition I have called long QT, which is otherwise​ known as sudden death syndrome.

For communicating, I wear two hearing aids which I rely on a lot. I am also an extremely good lip reader and sign up to​ British ​Sign​ Language (BSL)​ Level Three​. But, really, ​how many people do you know that sign? Within the hearing world, BSL is not much use to me at all.

​People tend to get very confused about what hard of hearing actually means. They tend to associate it with old people, so I often get people saying to me, “oh, yeah, my nan wears a hearing aid, we shout at her. I think she has selected hearing…chuckle chuckle.” I would be a very rich woman if I had a pound for every time I heard that, and yep, I mean ‘heard that’ because I can still hear things.

Sometimes, I can be in a room full of wheelchair users at a conference, for example, and I am the most able bodied person there. I am moving tables and chairs, assisting people to the loo if needed and then speakers will start up on the stage and, all of a sudden, I am the most disabled person in the room.
I normally can’t hear speakers clearly and often in these circumstances, the hearing loop (if they have one) doesn’t work or I can’t understand the BSL interpreter (again if they have one) as they are too fast and BSL is not my first language. So I sit, try really hard to lip read, take a painkiller as I know the dreaded ‘hearing headache’ will come on and try my best to keep up. It is hard work trying to lip read and, believe me, I don’t know any hard of hearing people who have ‘selected hearing.’ It depends on someone’s tone, how tired you are, your tinnitus (ringing in your ears) and how you feel that day.
​
So​ how do I approach telling people about my​ disability?
​When I am at work, I am very assertive most of the time. I have to be. I am a campaigner and a disability awareness trainer – that’s what I do. I tell people from the off that I am hard of hearing and for them to please look at me when they are speaking to me or to keep their hands away from their mouths. I even tell them when I need an eye break. ​When I am in a social situation, however, things can be very difficult and different for for me.
I tend to just struggle on a lot of the time, laugh when everyone else is laughing, strain to keep up and, even worse still, I apologise. Why is that? I guess I don’t want to embarrass people and make them feel like they are not including me. I often feel like I am being annoying when I keep asking what is being said and, frankly, it becomes boring for me as well. So the answer to the question is not an easy one, it depends on which Jennie you are in the room with.

​A lot of the time when you say to someone, ‘sorry,’ (I always start with a sorry, how very British of me, “Sorry but I am deafened could you turn and face me please,”) that person will more often than not appear to be somewhat embarrassed, say sorry as well and then shuffle around slightly and try to work it all out in their heads. A classic example of Scope’s ‘End the Awkward’ campaign. You see, I don’t seem as though I am hard of hearing, I have a hearing voice as I was born hearing, I am a good lip reader and you can’t see my aids as my hair is in a bob.

Now it is not all bad being hard of hearing. I fear I have painted a very negative picture so far. Would I change my hearing loss and and my disability? The answer is no, not because that is the PC thing to say and I am ‘owning my disability,’ I am saying it because that is how I feel. I believe I have an empathy, understanding and frankly unstoppable passion to support people who have communication impairments.
This is why I started up the charity Enhance the UK and do the work I do. I know so many cool​, talented​, fun people who are ​disabled, and of course some who are not. I truly believe that I would not have Enhance the UK in my life, and all that goes along with it, if I did not have my hearing loss.

So let’s talk about my favourite subject before it gets too deep. Dating!​
​There can be some real​ perks of dating someone​ with ​a​ hearing impairment, we can get you into the theatre for free or cheap, same with the train, and a lot of us can lip read conversations that you were never meant to know about from quite a way off and get all the gossip. Winning!

​Dating someone with hearing loss can be hard and somewhat awkward at times, for all the social reasons I talked about before. Not to mention when you are getting down to things and having a good old snog, the last thing you want is your bloody hearing aids whistling every time the hot man (in my mind he is always hot) puts his fingers through your hair. And then your aids end up flying out of your ears, then the floor and the dog runs in and eats one of them. That is a true story, killed the moment I can tell you.

​Let me tell you about one of my​ favourite, and also most awkward, dates.
​I was single, living in London and looking for a boyfriend, so I did what all single Londoners do – I joined a dating site. I started chatting to this guy who looked cute and we had a bit of banter via email. ​We soon arranged to meet up as I was not one for chatting online for too long. We met on the South Bank and as I walked out the tube, I was greeted by the cute detective that I had been speaking to. He even looked like his photos, result!

We went onto one of the boats on the river and had a drink. We chatted about work as you do. I may or may not have been twisting my hair and trying to make my lips look all pouty and thinking to myself, ‘I really fancy this guy.’ So, I went to take out my lip gloss and out fell both of my hearing aid batteries at the same time. They are really small and so this guy, who I named Gov as he was a detective and I thought it was funny, said to me, “what on earth do they power?” I then explained my hearing loss and he replied by saying, “why do deaf people do this?” Cut to him waving his hands in the air and scrunching his face up with the tongue in his bottom lip making weird groaning sounds. Oh dear.
I was thinking about throwing my drink in his face but that would have been childish, and a waste of a drink, so I explained about British Sign Language and the culture behind it. I don’t think he got it at all but he was embarrassed and didn’t know what to say, so he offered to take me for a ride on his massive motor bike (not a euphemism) around London and then buy me dinner. I am very shallow.

Next favourite subject…sex.
​Sex is great, we all love having sex but it can be a little awkward sometimes if you are hard of hearing and someone is trying to whisper sweet nothings in your ear. You can mishear totally which results in jumping up, turning on the lights and saying, “you want to do what to me?!” Again, true story and I won’t tell you what I thought he was saying to me.

Having sex with someone who is also deaf or hard of hearing can be hilarious. When I was younger I was having a fling with someone who was deaf and we always had to have sex by the door just in case his old’s came in, or we would put towels down​ against the door to try and block it from being opened, but always having one eye open just in case. Real romance.
​
So, back to the slightly more serious stuff. I started the campaign Undressing Disability three years ago.
I believe that ​having a disability can be a very isolating experience. As well as physical barriers, there is still a huge amount of prejudice towards disability amongst the general public
Undressing Disability is about challenging the misconceptions that create this unbalance and ensuring that better access to sexual health, sexual awareness and sex education is granted to disabled people. We provide a safe place in The Love Lounge for people to write in and discuss their problems and, in short, know they are not alone.

If people want to be sexually active they should be. I think there is this massive misconception that sex workers and disability go hand in hand. In some cases they might, but this should be a choice not the only option that people, men mainly, have. Most people I know and talk to want a loving relationship and want to feel loved and to love. Everyone has the right to have human touch, even if it is not sex as we know it. Any sense of intimacy between two people who care about one another is so important. Even if it’s a one night stand, but it is your choice, that’s also important. Lets face it, most of us have not only slept with people we ‘love.’ We all want to be found attractive and sexual relationships are the most natural thing in the world.

Sadly, Scope’s new research shows that that only 5% of people who aren’t disabled have ever asked out, or been on a date with, a disabled person. Am i surprised by this? No, of course I am not. Am I motivated to keep pushing the campaign until these statistics change? You bet I am.​

Feb 12
The author Holly Williams

Holly Williams on The Celebrity Big Brother Disability Benefits Row

By Disability, Lifestyle, My story One Comment

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.

Feb 09
The Love Lounge

Thank You, Lovehoney

By Disability, Lifestyle, The Love Lounge One Comment

Enhance the UK would like to say a massive THANK YOU to Lovehoney, the sexual happiness people, for their very generous donation of £10,000 to The Love Lounge.

The Love Lounge is a safe online environment where disabled users and their families can confidentially ask any questions concerning sex, relationships and disability to our panel of disabled ‘non-expert experts.’ They are Emily Yates, an accessible travel writer for ‘Rough Guide’ and Mik Scarlet, a prominent disability activist and TV personality.

We initially approached Lovehoney for sponsorship, as they seemed to be just the kind of organisation we wanted to align ourselves with, especially for this specific project. They are a sophisticated lingerie and sex toy online retailer and community who champion a varied, enjoyable and safe sex life.

Lovehoney are a conscientious company, recognising and valuing issues close to Enhance the UK’s heart. They are committed to regularly donating to national and local charities, as well as running the world’s only sex toy recycling scheme!

Now by providing us with this donation, which far exceeded our wishes, Lovehoney are emphasising the importance of intimate relationships for all. We will now be able to continue maintenance on our website and spread the work of The Love Lounge to potential new users around the country and beyond.

Thank You again, Lovehoney. Your money will go on to support physically disabled and sensory impaired people and their families seek help for the sensitive and important issues affecting them concerning sex, relationships and disability.

Jan 20

“My daughter is 18 and has been blind from birth…”

By Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments

Tim: “My daughter is 18 and has been blind from birth. She goes to college in our local area and is generally quite independent all round. My wife tells me that now, she has started seeing a boy in her year at college. Part of me is happy but a big part is being protective father, especially because of her blindness. Should I just let her be a normal teenager?”

Mik: “Hi Tim, Arh the joys of fatherhood. Especially if you have daughters! It’s all worry worry worry! But lets face it Tim, you’d be worried whether of not your daughter was visually impaired. It’s your job, you’re a dad!

I hope you know the answer to your question at heart. It’s let her fly. She is an adult now, and is carving her place in the world. Part of that will be dating, no matter how much it hurts you inside. It’s time to face up to the fact that your little girl is growing up, and be proud of how well she is doing.

This is a red letter day really and proof of how well you have raised her. She is obviously a confident, independent adult who is having no issues with getting out there and building a life for herself. Don’t worry about her impairment, or what might happens with those pesky boys. Just support her, and wait to see if she needs a shoulder to cry on… if those aforementioned pesky boys do what teenage boys do and act like fools.

Don’t envy you though. I dread to think what I’d be like if I was a Dad!”

 

Jan 20

“Should I brave using my arm prosthetic on the first date?”

By Lifestyle, Mik Scarlet, The Love Lounge No Comments

Michelle: “Hey guys, I have recently started internet dating since after Christmas and had a lot of interest on my profile, which is flattering! However, I only have one arm after losing it in a motorbiking accident in my teens. I usually only wear a shoulder prosthetic and skip my arm prosthetic as it can be a real pain – but should I brave it when going on the first few dates to avoid any awkwardness? What are your thoughts? Thanks x”

Mik: “Hi Michelle,
I am a big fan of being up front, so I would go as you best feel comfortable. If you don’t feel yourself when wearing your prosthetic then that might get in the way of the date. To me if anyone isn’t keen on you because of your impairment then you’ve been saved from wasting time on a looser.

I had a mate at school who lost her arm at an early age and she never wore a prosthetic. She also never had any issues with guys. Her confidence was really attractive to us guys. Most of the men I know would much prefer someone who was happy with who they were than someone trying to be something they are not.

So I think my advice would be ‘Be proud and leave the prosthetic at home.’
Good luck and have a great time!”

Jan 16
The author Holly Williams

How much should your disability be a part of your identity? Holly Williams

By Disability, Lifestyle No Comments

I have a confession to make. After several months of writing this blog I think the time has come to come clean. You see I have a problem, an issue if you like, that makes me a total hypocrite and I feel when I own up to it a lot of disabled people reading this will be up in arms and they will be totally right to do so. I’m not proud and I know I shouldn’t feel like I do according to conventional reason but there is a view that I hold that I can’t shift and quite frankly I don’t want to.

You see, I don’t ‘own’ my disability. I don’t class myself as a Disabled Person. I have a disability and I hate it. I’m embarrassed and ashamed by my condition and find it very, very hard to speak about the way it limits my life. Hip, PC people will say ‘it isn’t your fault that you view yourself so negatively. Society makes disabled people feel like this.’ But this really isn’t the case. I am not ashamed of myself, e.g. Holly the person. I just look at other disabled people and struggle to understand how they can accept and embrace their disabilities to a level in which it becomes a large aspect, if not the largest of their identity.

Let me explain what got me thinking about this. The social firm I work for is revamping its website and my boss asked all the staff to write a bio of themselves to be included. The outline he gave us was something along the lines of ‘write a bit about who you are, what you do here and why you work here.’ So I spent about a page talking about how I’m quite a driven person who didn’t want to sit round doing nothing just because I had a disability, how I really enjoyed doing graphic design and how important it was that firms like the one I work for gave disabled people an opportunity to have a job. Not once did I mention I had Cerebral Palsy. Conversely, a colleague of mine spent the first paragraph of his bio describing what his disability was and why it meant he couldn’t hold down a full time job. Now I have no right to tell my colleague what to write or how to feel about himself and like my boss says, it’s good we express ourselves in different ways on the site. I just, personally, found it very odd that someone would announce to the world over the internet their personal difficulties. To me, my impairment wasn’t particularly relevant. I have a disability ergo I have to work somewhere where I receive help. Why and what kind of help is, quite frankly, no­-one’s God damn business if they don’t need to assist me!

The problem is I’m a very private person. I know I sound about eighty but I do believe there are certain things you don’t share in common conversation. When Jennie first asked me to do this blog she suggested that I start by doing a piece about my romantic history and any problems I faced dating. I politely declined. I have had issues regarding my personal life relating to my disability that has led me to certain views but I believe that sex and intimate relationships aren’t something you go round discussing with all and sundry and to an extent I feel like this about my impairment as well.

I feel like I’m in a minority among disabled people. I mentioned in a previous blog that I have friends with disabilities who are quite happy to speak at length about the various afflictions caused by their impairments and sometimes I ask myself why they do this. Is it because they’re looking for support from fellow sufferers? Their difficulties are vastly different to mine and even if they weren’t whose to say we would have similar methods of coping? My theory, and it is only a theory, is that their lives have been so entrenched by professional opinion and medical diagnosis that they’ve taken what they’ve heard over and over again and used it to form their personal identity. ‘This is who I am because I suffer from X disability which means I have trouble doing Y.’

I don’t want to dictate to anyone where and how they get their self­worth, if being a ‘Disabled Person’ is who you ‘are’ and you’re happy with that then I can’t change that. But I do wonder if it’s entirely healthy to base your personality on your limitations rather than your talents and interests.

I notice some parents of disabled children do this too and that I find really disturbing. I understand that being a parent of a disabled person is very challenging and tiring at times and you must be grateful of an outlet to vent your worries and woes but I am baffled by the willingness of some people to unload their children’s problems and diagnosis to a virtual stranger while the child is in earshot. How can you expect them to have any self­ respect or a broad character if that’s the introduction their parents give them? I always have to fight the urge to start asking really probing questions about their sex lives or medical history to see how they like that level of exposure.

I raised this issue with my Dad. He was convinced people did it because it’s a shared bond, a way of breaking the ice when two disabled people meet. He said, ‘Look, if I’m out on my motorbike and I go in a cafe and see a bloke sitting there with a motorbike helmet on the table, I’m going to start a conversation with him about bikes because it’s something we have in common. It’s the same as that.’ I disagree. Motorbikes are my Dad’s hobby, he enjoys them, chooses to be interested in them. Being disabled is not my hobby, it’s a pain so why would I want to pick over that sore point? Amy, my P.A, was driving me back from a friend’s house once when she said, ‘I didn’t realise how little you talked about your disability until I met your friends.’ My response was, ‘what’s there to say? You know enough to help me. Talking just reminds me of what I can’t do. There are more interesting topics to talk about.’

I do understand why some people feel the need to tell people about their impairment, especially when their disability isn’t obvious at first glance. They feel the need to explain what is wrong with them to avoid misunderstandings. But I can’t help feeling that every time this happens and it’s not needed that the person is somehow apologising for something that isn’t their fault, exposing a piece of themselves that is broken somehow. My main disability cannot be hidden but I have other impairments that you can’t see, some of them more disabling than C.P. I won’t say what they are because why should I invite more stigma into my life? People judge me enough as it is.

Despite all this, I know at the end of the day I’m wrong. We do need to talk about all aspects of disability if we are going to educate and make society more accepting. I admire people who see no shame in telling others what it’s like to them and I do try to be as open as I can. It’s just that I want to share the best of me with the world, not just be focused on my disability.

Jan 05
The author Holly Williams

Holly Williams on Obesity and Disability

By Disability, Lifestyle, My story No Comments

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.

Dec 16
The author Holly Williams

Holly Williams on Care Homes and Independence

By Disability, Lifestyle No Comments

I’ve been in trouble for opening my mouth again. If you know anything about me you will realise that there’s nothing new there. It happened last week at work when one of my colleagues told me to stop asking her whether she regrets moving out of her mum’s house and into the care home where some of the rest of our work mates live.

Apparently I ask her this every week (true, I guess) and the answer is always the same. Yes, she’s happy because she is no longer reliant on her mother for care and is with friends her own age. She is, in her personal opinion, independent and that’s fine for her.

I’m happy she got what she wanted. It’s just that when me and my colleagues get chatting over lunch I hear stories about this care home that make me question what their definition of independence is as it seems very different to mine.

I will try not to be a hypocrite here. If I am going to judge other people’s living choices I must be totally prepared for others to criticise mine. I am a 33 year old woman who still lives at home with her parents. They cook, keep house and care for me (correction my mother cooks, keeps house and cares for me, she is adamant Dad does close to sod all!) For a lot of people, disabled or not, this will seem a bizarre, lazy and childish situation. To an extent, they are totally right. I like being ‘done for’, not taking responsibility for the day­ to ­day domestic chores. It frees up my time to write or just chill ­out. You are totally free to call me idle and pampered and I won’t disagree.

My mum makes my bed and I lie in it. But living with my parents also allows me to have the freedom to do what I want when I want to, to me that is the definition of independence. They allow me to make my own choices, even if they don’t agree with them, and help me to carry them out. This is something I wonder whether my friends in care homes truly have.

Now, I will state that what I write in this article is simply the view I have formed from listening to other people talk about where they live. I am sure there are some very good care homes out there just as I’m sure that my friends’ stories and opinions are coloured by their life experiences and personalities. But when I hear them talk about staff stopping them doing stuff because they have a ‘duty of care’ I inwardly cringe. How can you say you’re an independent adult when there is someone employed to decide what is ‘safe’ and ‘appropriate’? Surely the flip side of independence is responsibility so how can you be independent when someone else is responsible for you?

‘But Holly,’ I hear you cry, ‘some people with learning difficulties can’t be responsible for themselves.’ Very true. But in a home where the residents have a mix of mental abilities is it really fair that the restrictions placed on certain people to keep them safe are placed on everyone? Is that really equality or has it more to do with control? I mean, if one person is on a special diet because of their disability is it ‘fair’ that everyone should be on it to? I’m physically disabled and have trouble walking but I still exercise my legs so I can walk the best I can even if I will always need help, it’s healthier for me to do that than to be stuck in a wheelchair all the time. Surely the same attitude should be applied to those who struggle mentally? Carers should be helping them make a decision not taking the decisions away from them or skilfully guiding them towards the choice that they think is appropriate? This does happen and, in my opinion, borders on abuse.

This brings me to another point and a darker one at that. It is, in fact, a personal phobia of mine that can be summed up in one word; institutionalisation. You see, when you live in a care home, having everything done for you, being told when to get up, when and what to eat, where to go, what activities to do, it is very easy to go along with the flow, conform and not question. After all, carers are employed to help you, why wouldn’t you trust them to know what’s best? But it is their job and it’s not always that well paid, who can blame them for wanting to make it as easy as possible? What could be easier than a group of disabled people who don’t question your policies, who go along with what has been decided because that is just the way things are done? But the worst part of institutionalisation is it can happen to anyone. It doesn’t just occur to people who struggle to understand and question why carers implement policies or lack confidence to speak out.

You can take a highly intelligent, outspoken person, place them in a care home and within six months have them sitting round, playing bingo and watching ‘Loose Women’ day ­in, day­ out.

Why? Because when you rely on carers for everything there’s always the fear that if you say anything they don’t like they will take it out on you. And even if they don’t, why bother to change anything when the status quo is adequate. You can only shout and fight for so long before you get tired of the agro and have to sit back and resign yourself to Phil and Holly and cooking biscuits on a Wednesday because that’s the way it is, was, and always will be so sayth the prophet/care manager, amen.

Another friend from the same home had to wait 5 hours for someone to take her to the loo. I don’t put this down to lazy carers, they are shockingly underpaid and understaffed. But when someone has to wait nearly half a day for a pee and is just expected to accept it, questions surely have to be asked and answered.

Don’t think I’m speaking from a place of ignorance. I lived away from home for nearly two years from 16 to 18 while I took my A­ Levels. I was overweight, dirty, unkempt, stressed and lonely (though not all of these can be blamed on carers, I struggle to make friends and can out eat a sumo wrestler!) My parents hated it, my grandparents hated it twice as much, I hated it. I stayed because I’m uncommonly stubborn and won’t give up on something when I’ve started and I knew that it was only a temporary situation that I chose to further my education and life experience. I came home every weekend and left as soon as I’d sat my final exam. The experience turned me against residential care for life so perhaps you can excuse my prejudice.

But going back to my friend and what made me query (yet again) whether she was still happy with her decision. It was because she was saying that she and the other residents tend to wait until after 9 o’clock to chat about certain topics because there were less staff around to tell them that what they were saying wasn’t appropriate. Cue old ­fashioned needle being scratched across a record sound effect. Excuse me? They do what? The staff at this home ‘tell you off’ (her words not mine) if you talk about something they deem as ‘inappropriate?’ You are disabled adults in your twenties and thirties not naughty ickle kiddie­winks using rude words behind teacher’s back. You should be able to say what you want, when you want; it’s a free country. Sure the carer also has the right to voice an objection if the topic offends them or makes them personally uncomfortable, but not because they believe that innocent, vulnerable little disabled people should be talking like that and it’s their job to keep them in check.

I have a very bad habit of dropping the F­bomb more often than an articulate, gentlewoman novelist should and when I do my parents will very often berate me for it and tell me I have a wider enough vocabulary not to use coarse language. But they are my parents and say it because they don’t like hearing their daughter swearing, it is nothing to do with my disability. I often get into a debate with my Dad as to why he can watch Steven Segal or any other action star curse a blue streak but I get a red ear for saying the same. That’s my point, I CAN debate, argue, disagree and tell my parents they’re wrong without having to fear they will withdraw care from me as ‘punishment’ or say I can’t do something because it’s not ‘safe’ or they have a ‘duty of care’. They respect my right to view and access the world on my terms and face the consequences and help me to do so. That, to me, is independence.

I’m not naïve. I know my parents are getting older and one day I will have to look towards letting other people help me live my life. But when I do, I want their job to be helping me do what I want to and make my own decisions, not keep me safe according to someone else’s agenda.

Dec 16

“I have cerebral palsy and can count my sexual experiences on the fingers of one hand.”

By Disability, Emily Yates, Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments

“You invite people to share their stories of sexuality.
I have cerebral palsy and can count my sexual experiences on the fingers of one hand. A psychiatrist once tried telling me this was because I was sexually deviant. I did not argue, but I felt he was mistaken and that he had no basis for advising me because he was not disabled and had not had any experience remotely related to disability.I would genuinely like to know how much you relate to this experience and its point of view. Thank you very much indeed.​” – James

Emily – “Hi James, many thanks for writing in.
From one with CP to another, I can absolutely relate to your story.Seeing as ‘deviant’ really means ‘differing from the norm,’ we’re probably all sexual deviants in our own ways, and this should in no way be seen as a negative thing.  The problem is, the psychiatrist that you spoke to definitely displayed it negatively!

As I don’t know the psychiatrist, I can’t tell you whether he was capable of advising you or not, but what is coming through loud and clear is that fact that he seemed to give you little option to define for yourself what you sexually ‘were’ or ‘were not’.  And that’s a problem that plagues society as a whole.
For example, society (in general) sees fewer sexual experiences as something to be ashamed of, society (in general) sees disability as an asexual concept, and these are the things that we are desperately trying to change.

In short, I sincerely hope that experiences like yours become fewer and more far between.  Do write back in if you’d like any advice on any other aspect of disability, sex or relationships. Wishing you a lovely festive season, Emily x”

Mik – “Argh James, the old “you’re deviant due to your disability” line eh? It is true that many non-disabled people seem to find the things that disabled people sometime need to, or want to, do disconcerting. They like to say it is because they consider what ever fantasy or sexual predilection we admit to as being kinky, but I really think it is because they are uneasy with us wanting to not have sex but enjoy it. Those in the medical and social professionals can be the worst, as they really think they understand disabled people as they have learned about us during their training. It takes a really skilled and rounded “expert” to be able to explore their own feelings around disability and sexuality, and to come out the other end being able to admit that we have all the same wants, dreams, desires and even fetishes as any non-disabled person might do. I would say never let anyone tell you are deviant, unless you are into some really weird shit.

 I have had the exact same experience just on a much more public scale. In the mid 90’s I was a well known TV presenter. I also sang in a rock band and we played on the fetish scene a lot. The Daily Mail ran a story “outing” me for being into kinky sex, yet only a year earlier the News Of The World ran a story with the headline of Wheelie Sexy, claiming they had found this new disabled sex symbol singer and presenter. What it seems is that if you appear sexual as a disabled person that’s fine, but if you actually have sex and know what you might want out of sex then that’s just sick. It taught me that the wider public really do find the subject of disability and sex frightening and confusing, but then they are a repressed bunch mostly.
As well as being freaked out if disabled people express an interest in experimenting with sex, many people find the fact that we might need to try different stuff due to our specific physical needs equally troubling. I have written several articles on how many of the techniques used by disabled people to enable them to have sex would be of benefit to the wider non-disabled community but they are only ever featured in speciality magazines. The mainstream press find the whole idea of us teaching them something to bizarre to accept.
Without knowing what exactly it was that caused you to be called a deviant, all I can say is if you really are into fetishism or any other left field sexual activity, why try visiting a local fetish club. It’s one of the few places where people accept you as a sexual entity, and you might find someone that thinks what you are into is perfect match for them.
I should also like to say that only being able to count your sexual partners on one hand is not a bad thing. I don’t know how old you are but until I was nearly 30 I could have done the same with fingers to spare. Even today I could only use both hands and I was a famous TV presenter. It’s not the quantity that matters, but the quality. I’d much rather have a few great nights to remember than a succession of crap shags.”
Top