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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.”
Nov 24
The author Holly Williams

Personal Assistants and the Professional Line By Holly Williams

By Disability, Lifestyle No Comments

I got a text message from a friend a couple of weeks ago that she asked me to pass on to as many people as I could so I thought I’d use this blog to do just that. It goes:-

‘When is it socially acceptable to ignore an employer and talk to their personal assistant about them in front of them? I as a disabled person employing a P.A don’t think this should ever be socially acceptable but an incident today shows it still socially acceptable to some people. Please treat everyone with respect.’

Powerful words, very well put I’m sure you’d agree. It got me thinking about myself, other disabled people and what is possibly one of the most intimate and potentially difficult relationships we will have with another person. Hiring a P.A is a big deal and, I think, totally unlike most other employee/employer relationships. Their job is, after all, partly a social one, helping you to access many outside activities most people take for granted such as going out to the shops, to shows and clubs, the sort of things you would do with your friends if you weren’t disabled, as well as dealing with maybe very personal care needs.

I get what my friend is saying, of course. It is annoying and bizarre when you’re out with someone you’ve hired and people talk to them like they’re ‘in charge’ of you. It is a pretty belittling situation. But sadly people who don’t have much to do with disability make all kind of assumptions and it’s really our choice how we react to them. Sometimes I think it’s up to those of us with the ability to do so to openly challenge people’s perceptions. But it can be draining and exhausting to get into a long debate about human rights with every person who asks ‘does she take sugar in her tea?’ You can, as my friend said she did when I asked her about the incident that made her send me this text, just call the person rude or ignorant. But not everyone comes into contact with disabled people on a regular basis and many don’t have a wide knowledge of what is politically correct. This is especially the case with certain older people. For instance, my great uncle would never deliberately say anything to hurt or offend me but he refers to people with Down’s Syndrome as ‘Mongol’. He isn’t being cruel, he’s from a different age and doesn’t know any better. Very often I find myself taking the third option and just letting things go when comments are made.

But the topic of strangers’ attitudes is something for me to write about in a future blog. What Iwant to talk about right now is P.As. Like I say it’s a really tricky relationship. I hear a lot of talk about the importance of keeping a personal distance between P.As and people they work for but is that always possible? Shouldn’t there be a level of friendship and honest respect between two people working together in that particular way? I think so. I remember being eighteen and deciding with my parents that it would be a good idea for me to employ someone to take me out now and again. We didn’t really know where to start so we asked someone from an agency for advice. He arrived at our house and at once launched in to a spiel about employment law and insurance that was totally over our heads. When I tried to explain I simply wanted someone nice to go places with, he told me rather tartly ‘you can’t buy friends’. I was upset to say the least. I wasn’t trying to ‘buy’ anyone, I just wanted to find a nice person to help me who I liked.

I did find a very good P.A a couple of years later who also worked with a friend of mine. They do say personal recommendations are the best way to find the right person for a job. We had several very happy years going out places together, chatting and I could not say one bad word about her, while she was my P.A. That was the problem. She was so good at her job, I really thought of her as a friend. Then she decided to move on. Now I understand she totally had the right to take her career in whatever direction she wanted and I would have generally wished her well if she hadn’t decided to let me know about it without warning, in the interval of a Queen tribute concert. Totally out of the blue. I’ve never been dumped by a boyfriend but I can imagine that’s how it feels. I spent the rest of the night sobbing loudly through Radio Gaga, wondering if I wasn’t a big enough challenge for her. I just wish she could have waited till the end of the show or even arranged to meet me over coffee and told me then, but you live and learn. I didn’t hear from her again after that, no text or email or even a Christmas card. In hindsight, I think I understand her mindset. The job was over so she wanted to avoid any tricky emotional strings by just cutting all contact, the Mary Poppins approach. But it doesn’t make in any more painless.

She did the same to my friend who she worked with. My friend is profoundly physically impaired, has very bad sight and finds it very hard to communicate but the expression of rage and hurt when the P.A’s name is mentioned is so clear that you can’t misjudge what she is thinking. But of course, there are two sides to every story and disabled people can mistreat, hurt and disrespect P.As just a much as they can us. I think it’s very easy to use them as 24 hour lackies there to do our bidding with no life of their own. There are some lovely people out there who choose to make a living helping us and it’s wrong to take advantage by expecting them to become living doormats who exist only to serve (I shall ignore my mother rolling her eyes when she reads this. Yes I do expect a lot off her but I’m not sure many P.As would get away with referring to their employers as ‘ratbags’ either!). P.A’s also get ill, a fact I’m sure certain disabled people seem to struggle with. I remember one time my P.A had a long belt of ill health and my mum had to take me to several social events. The looks of disgust my P.A got by some of my mates when she returned were unbelievable. You would have thought she had locked me in a cupboard for two weeks!

At the moment I have a lovely P.A called Amy who loves Brighton Football Club and has the biggest heart of anyone I know. Past experience has made me weary but after several years working and having fun together I can honestly say I trust and respect her completely and hope she feels the same about me. She has been there through good times and bad and I know, even if she isn’t always my Personal Assistant she will always be my friend. She has gone out of her way to help me when the job didn’t require her to and I have tried to do the same for her. We both have flaws but we try to accept them in each other. Because, as my friend so rightly says, everyone deserves to be treated with respect.

Nov 19

“My parents have always been over protective of me…”

By Disability, Emily Yates, Lifestyle, The Love Lounge No Comments

“My parents have always been over protective of me because of my disability which leaves me with limited movement in my joints and reliant on a wheelchair. But now I’m 17 I’ve gotten a lot better at navigating everyday tasks and I’m a lot less dependant on my parents. Last year I even started school for the first time after being home schooled and I even met a guy who wants to go on a date with me. But unfortunately I really don’t think my parents will let me as they’re too protective. How can I sway them? I can’t exactly sneak out undetected!” Hayley – Nottingham

 

Hi Hayley.  This a real tough one.  It’s understandable that your parents are a little too protective due to your disability, but they should also recognise your new found independence and your desire to go on dates like any other 17 year old! The fact that you’ve now started school is a huge step, and I hope that’s going really well for you.  In terms of the date, I think you need to find a compromise that both you and your parents are comfortable with.  I don’t think sneaking out or being dishonest is the best way forward, but you should absolutely talk to them about how you feel.  Say that you really appreciate the fact that they care so much about your wellbeing, but that it’s also important that you challenge yourself ever now and then, and do things that, up until now, you might not have had the ability or confidence to do.  Find a common ground with your parents, perhaps say that you would be happy for them to drop you off on the date and pick you up at a certain time, then at least they know that you are safe, which I’m sure will be their main concern! I’m sure the guy that wants to take you out is lovely and understanding, so perhaps also explain to him the fact that your parents are a little worried.  He might be happy to reassure them with a phone call, or go over to your house to meet them beforehand.  Really hoping that all goes well for you, you deserve it!

Emily x

Nov 19

“I’ve just started seeing an amazing girl in the year above…”

By Disability, Emily Yates, Lifestyle, The Love Lounge No Comments

“I’ve just started seeing an amazing girl in the year above from school. She knows I’m partially blind and it’s never been a big deal. But one of the only places we can hang out is at the cinema which doesn’t have many accessible movies with audio description. I don’t want her to get bored with me! What other fun cheap dates could I take her on?” 

Matthew – Liverpool

Hi! Some of my most memorable dates have been the cheapest! It’s great that you want to mix it up a bit, and I’m sure she will love the date, whatever it is that you decide to do.  I always thing it’s wonderfully interesting when you show somebody else ‘your world’, and introduce them to things that they’ve never experienced before.  I play wheelchair basketball, and have taken my boyfriend to a game with me.  He’s able-bodied, and we’ve just started taking wheelchair ballroom dance classes! He loves it, as it’s something that only I have been able to show him.  Do you take part in any similar classes or clubs that you could introduce your girlfriend to? They’re often free which is a huge plus! Failing that, going for a homemade picnic is always a winner! Or how about going back to basics and having a board game day at your house?! Totally free and SO MUCH FUN.

Emily x

Nov 11
The author Holly Williams

Holly Williams on Able-bodied and Disabled Friendships

By Disability, Lifestyle No Comments

There is an old Chinese proverb that says friends are the family you choose for yourself. Actually it could be just a fridge magnet I saw once but either way I’m not 100% sure I agree with the sentiment. In my experience, friends are just the people you know who you find most tolerable and you don’t bug enough for them to avoid. Does anyone really choose who they become friends with and if you do what do you look for in a friend? In a way, it’s harder to form a friendship than start a romance. Think about it, everyone has a ‘type’ of partner that floats their boat. Whether it be tall, dark and handsome, someone with a good sense of humour or a person who shares your interest in the history of British asylums and whimsical taxidermy (this isn’t my personal lonely hearts ad, so if I have described you to a tee, don’t email the site, although if you are remarkably gorgeous I will accept photos!) But friendship is different. No-one sets out saying what kind of person they would like to be mates with, do they? It kind of just happens.

The thing is I think you tend to make friends among people you spend a lot of time with. If you’re a disabled person, living in a residential home, going to clubs, groups and institutions designed for disabled people then most of your friends will end up being disabled. But is it healthy for us to only associate with other disabled people? Is it prejudice even, against people who aren’t disabled? I really can’t say but it does seem to me a little limiting to only hang out with one particular kind of person, you end up with a pretty blinkered view on the world.

I myself have a fairly diverse circle of friends some of who are able-bodied, some who have physical disabilities and some who have learning impairments. It sounds pretty bigoted to say that I relate to them in different ways but if I’m totally honest I know there are some very fundamental differences in our relationships. With my disabled friends, I always know there is an unspoken history, a way of viewing and experiencing the world that people who don’t have an impairment can’t fully understand. This can be a double-edged sword, however. It is nice to know I always have people who can sympathise with my situation but I sometimes find that there are certain members of my social circle who seem to feel that we only relate to each other because we are disabled. Of course, I try to be a good friend, listen to them when they talk to me about problems with carers, various medical conditions and political issues and of course I can relate to them. But there are situations when I find myself wishing we could talk about TV, the weather, the plight of the polar bear, ANYTHING else just to remind ourselves that there is more to life than being disabled. I suppose everyone, disabled or not knows the situation, you’re out with friends and they skilfully get the conversation on to THAT topic, the pet subject whether it be football, holidays or their children when they begin to wax lyrical. It’s a very strange form of ‘friendly’ competition where we try and work out who is the richest/poorest/luckiest/unluckiest person in your group. Well I have certain friends who seem to like to do it with disability. We sit round over coffee seeing whose body works the least. Perhaps it’s meant to make us all feel better but there are times when it’s just depressing.

There is another, more practical issue regarding being in a group of disabled friends. You see, when a bunch of able-bodied mates go to the cinema or down the pub, no-one bats an eyelid. You just ring around, ask who’s free that evening, arrange a time to meet down the Red Lion, arrive, have a drink and a chat, you don’t bother anyone, they don’t bother you, nice night out, end of story. When a group of disabled friends go out, it’s an EVENT, a military manoeuvre that has to be planned, timed and organised with the same detail as the assassination of Osama Bin Laden only with slightly less advanced warning. Carers and transport have to be booked, locations have to be scouted out in advance for suitability. I work with a girl who seems to spend every lunchtime on Facebook, fishing among her friends to see if anyone’s free to come to the care home she lives to take her up the chip shop. And when you do arrive at the restaurant, is it me or does anyone else feel a bit, well, conspicuous? Most places are totally fine with one wheelchair user arriving but when it’s three or four invading on mass, it seems to be a big deal.

Chairs and tables part like the sea of Galilee and you find yourself moving through uttering never-ending ‘sorrys’ as you all try and get round the table. I’m not going to blame places for this, sometimes it is difficult to fit a lot of chairs in. What I am going to blame people for is the assumption that is sometimes made that if a group of disabled people arrive at a pub, restaurant or theatre that it is some organised outing from a home, a ‘treat’ from our wranglers who have let us out into ‘normal’ society for the day. What fun! As hard as it is to believe, it is possible for a group of people, some of who may just happen to have a disability to go out for the evening without it being some sort of home outing. There is nothing more awkward for someone in that group than having a waiter turn to a able-bodied friend/carer/parent and talk to them like they’re ‘in charge’. I remember being on holiday with a group of other disabled people and arriving at a gift shop where the owner looked at my mother and asked her who was ‘responsible’ for us! My mother very clearly informed her that we all were responsible for ourselves and we left without purchasing a single tea towel!

But what about when I’m the only disabled person in the group? Are things easier? I certainly feel less conspicuous that’s for sure but then there’s a whole other set of issues. I’m so used to hanging out with my parents that when my able-bodied mates take me out for a meal, I feel sort of naked. It’s like I’m a kid playing grown-up. They treat me as an equal but secretly I don’t feel like one, not because I doubt their sincerity but because their lives seem so different to mine I end up analysing whether there is something wrong that I am a 33-year-old woman who still lives with her parents. I’m happy like that, but deep down I know it’s not normal. Then there’s the fact that I often literally can’t join in the conversation. In a group, everyone’s nattering away and with my speech defect I can’t get my point across. Then when someone notices I have got something to say, they usually try and help by telling everyone to be quiet because ‘Holly wants to say something.’ Then I’m left with half a dozen people looking expectantly at me while the comment I was going to make related to a topic everyone else have moved on from.

But my major problem regarding friendship is that I suffer from what my mum called ‘Cooper’s Syndrome.’ This is a startling similarity in social interactions to the character Sheldon Cooper from hit US sit-com The Big Bang Theory. I just find it very difficult to engage in chit-chat and prefer my own company to that of others. It simply takes a great deal of concentration for me to follow a conversation, remember the social niceties required of me, form relevant responses when all my brain really wants to be doing is thinking quietly about the next chapter of my book or that interesting fact I saw on QI last week. People say that I’m outgoing but really that’s just a persona I created to get by in life. Ultimately, I live with my best friend 24 hours a day and most of the time we’re very happy on our own. Her name is Holly.

Nov 03
The author Holly Williams

Holly Williams on Disability, Body Image and Fashion

By Disability, Lifestyle No Comments

‘What on earth has Rene Zellweger done to her face?’ That seems to be the question every other person (me included) has been asking this week. The ‘Chicago’ star’s drastic physical transformation has been the latest event to trigger a thousand discussions on the subject of the idealised body beautiful and the pressure on women to live up to impossible airbrushed standards of celebrity. But amid the arguments about what such images are doing to the minds of impressionable girls and insecure women up and down the country, I can’t help but think where disabled women like me fit into the picture.

I find it sad and more than a bit disturbing that in today’s world the currency of success and value seems to be outward appearance. I like to think that I am above such shallowness. I have always tried to tell myself that because of my disability no amount of primping and polishing will let me compete with the socially defined model of attractiveness so the pressure’s off. I’m a sheep in the Grand National; totally unsuitable for the field so I might as well just enjoy nibbling at the grass. I don’t see myself in the media so how can I be affected by it? But that’s not the case. The truth is I like to look good, spend hours trawling the shops for the latest fashions, go to highly impractical lengths to dye and style my hair. But why? Who is it I’m trying to impress? Am I, like so many women, compelled to conform to something I can never achieve?

I guess part of the blame falls on my mother (she will say I blame her for everything so why not this?) It is a running joke in our family that my grandparents must have seriously psychologically damaged her by being unable to afford to buy her a Barbie doll so she’s just using me instead!

When I was a child she would spend money that she could ill afford on nice clothes for me because she was determined that I ‘wouldn’t look disabled.’ Now before I receive hundred of slurs against her, let me explain something. My mum isn’t and has never been ashamed of me having a disability nor has she tried to hide it. What she meant by not wanting me to look disabled was that she had seen a lot of disabled people who had been dressed with pure practicality in mind and didn’t see why just because I had a disability I couldn’t look cute, pretty or modern just like my able­ bodied peers.

I think her sentiments underline a problem faced by a lot of disabled women, especially ones who live in care homes. Having a physical disability means that you have to keep comfort and ease of access in mind at all times in regards to clothing. The problem is clothes that are comfortable and practical are very often unflattering. Tracksuit bottoms are great when it comes to dressing yourself and going to the loo unaided but they aren’t the most stylish garments. Personally, I love jeans and was thrilled a few years ago when the elasticated, stretch jeans came into fashion. Finally there was a pair of decently cut jeans that didn’t come with a lot of fiddly buttons and zips and had a bootleg cut that that fitted nicely over my shoes. I bought literally dozens of pairs and wear them all the time. But fashions come and go and over the pass year or so I have noticed that this style is on its way out, meaning that the one stylish style of trouser I could manage myself is becoming impossible to find on the high street.

Another garment I really struggle with is shoes. I have a paradoxical relationship with footwear. I own more pairs that Sarah Jessica Parker and Imelda Marcos combined and yet I hate shoe shopping. Seriously, I LOATH it. So why do I own so many shoes? Because it’s virtually impossible for me to buy a pair of attractive, comfortable, flat dress shoes that stay on my feet so when I find a pair that somewhat fits the bill I buy them. Correction, my mother buys them when she sees them, I have got to the stage where I get so disheartened by mooning over gorgeous stilettos that I could never wear that I refuse point blank to stay in a shoe shop for more than half a hour.

Which sort of brings me back to the question of the acceptable face of beauty in the media. The fact is I try to dress in a fashionable manner that suits me but the image I project to the world isn’t the real me. Not how I want to be seen. It is a compromise between what I like, what suits me and what is practical. The really ironic thing is when I dress in the style that truly expresses my personality it doesn’t conform to the mainstream because I don’t want it to. I am, by nature, the outsider. Not because I’m disabled but because I love standing out and hate conformity. Over the years I have described my style as gothic, rocker, cowgirl, high glam, wannabee drag queen, retro, nerdy, out of style, on trend and every combination in between. I guess what I’m saying is you can’t take much notice of what’s going on on the catwalk or in Hollywood because at the end of the day everyone has their own taste and body type. I will never look like Rene Zellweger but then again neither does Rene Zellweger!

Oct 20
The author Holly Williams

Writing, Fantasy, Disability and Me by Holly Williams

By Disability, Hollie Williams, Lifestyle One Comment

When I met Jenny, one of the owners of this site, through the firm where I work and she asked me if I wanted to contribute to this blog, it put me in a bit of a quandary. Of course I was keen and flattered to be asked but where to start? What angle should I come at the topic of disability from? As a writer that has always been a sticky point for me, finding the first sticking point to launch myself into something. So after much pondering I decided what better place to start than writing itself, why I do it and what I do it about. And like all good stories mine starts a long time ago.

Once upon a time, there was a little girl named Holly who, because of some complications at her birth, was born with Cerebral Palsy. She was a very bright, if somewhat stubborn and disobedient, child who wanted to do everything she saw other children do. Her parents loved her very much and having been told by doctors that she would be ‘little more than a vegetable’ decided to stimulate her eager young mind in every way they could think of as they were sure that their daughter would prove the so-called ‘experts’ wrong, (they were quite stubborn and disobedient themselves!) So with the help of Holly’s devoted grandparents they set about filling her life with as much information, fun and education as they could. They took her on countless day trips everywhere from stately homes to the seaside, enrolled her in mainstream Brownies and played endless educational games with her. But although Holly’s childhood was as stimulating and as fun as any child could wish it, she was still very aware how different she was to other children and desperately frustrated. Monstrous tantrums would erupt when her damaged body wouldn’t do what she wanted it to or drawings would be ruined by her clumsy hands. What she desired most in the world was to do something that wasn’t affected by her disability. And so, in desperation her parents turned to books. They read to her, as much and as often as they could. In the car, in the bath, waiting for doctors’ appointments, as they attempted (mostly unsuccessfully) to feed her breakfast and when they tried (VERY unsuccessfully) to get her to sleep at night. They read everything and anything that was suitable from Roald Dahl and Enid Blyton to the Brothers Grimm and Childrens’ Encyclopaedias. And she adored it.

Thus begun a romance and love affair that has lasted my entire life. Words and stories became my favourite toys and dearest friends. They didn’t break when I played with them or run away or point like other children. Soon I grew bored with just hearing the stories my parents and grandparents told me and started making up my own. I have wanted to be a writer for as long as I can remember (apart from one day when I was about six when I put my Dad’s slippers on my hands and decided I was going to be a dog!) By the age of 12 I had written my first book ‘Animal High’ about a school for disabled and non-disabled animals which was published for charity, the proceeds going to the special school I attended. I took a short break in my teenage years to sit my GCSEs and A levels before leaving education at 18 to start my first novel. I decided to write about disability, (they do say write what you know). I sat down at my computer, opened up Word and…Nothing! Well not nothing, a few pages of various stories about special schools and residential homes but nothing that made want me to keep writing.

Now can I tell you a secret? Promise you won’t judge? I find writing about disability boring. Not all the time of course, I wouldn’t be on this site if I did but a full length novel? It hit me why I had such bad writer’s block. I didn’t want to be a writer who wrote stories about disability, after all, I didn’t read books about disability. I wanted to be a writer who wrote gripping, thrilling fantasy adventures that just happened to have characters with disabilities right at the centre. Now you may not think that there’s much connection between disability and fantasy literature, after all there aren’t any disabled students at Hogwarts (I have a MAJOR issue with that by the way. Every creed and race shown learning magic but not one wheelchair, what gives?) But if you’re a massive fantasy and mythology nerd like me, you’d be surprised what crops up.

Hephaestus, the Greek god of the forge was depicted as having wasted legs and throughout history there has been a long tradition of people with disabilities such as blindness and physical deformities being seen as possessing or being victims of magical powers. The saying ‘I have a hunch’ originally comes from the belief that those with spinal deformities had psychic gifts. The term ‘changling’, a baby who was stolen by the fairy folk and replaced for one of their own, is believed to come from people trying to find explanations for numerous impairments from epilepsy to autism. Of course, such folk tales were usually far from flattening and such legends were quite often used to persecute and portray disabled people as ‘evil’ or ‘unnatural’, but the very fact they exist fascinates me.

My first fantasy novel ‘The Jersey Guardian’ was published in 2005 and over the following years I completed the trilogy with ‘A Warlock In Jersey’ and ‘The Ghosts Of Helier.’ The stories focus around a fourteen-year-old from South London named Jessica Kent who discovers that her family are fated to be the guardians of Jersey and protect the isle from witchcraft and evil. If you read my books (please read my books, there’s a link to buy them at the bottom of the page), you might be surprised to find that there are no characters who have clearly recognisable disabilities but that doesn’t mean the themes and problems that have affected me through my life in regards to my disability aren’t featured at the core of the stories. While it’s true that the main threat faced by my heroes comes from the supernatural, they also have to tackle what it means when you or someone you love has a physical impairment and learning difficulty. It’s one thing to seek out and destroy ancient magic but how do you face the challenges of knowing you’re not as ‘normal’ as the rest of society and face the harsh judgements of others, even those within your own family?

In traditional fantasy literature where the hero has to summon inter strength to rise to vanquish every obstacle, it’s hard to raise the topic of disability when most impairments have to be endured rather than cured. I don’t claim to have totally succeeded in creating disabled heroes and role-models that were lacking when I was a child. I’m not arrogant enough about my talent to make that statement. Let’s face it, who, disabled or not, wouldn’t want a magic wand or potion that would make them happy, healthy and rich. That’s why fantasy exists in the first place, to create in the mind what does not exist in the real world. All I’ve tried to do is create a cast of characters who are interesting, brave, funny, loving, selfish, cunning, foolish, bigoted, forgiving, and enjoyable enough for the reader to stay with for 300 or so pages. It just so happens that in my stories one or two of them might not be considered as ‘able-bodied’. Holly Williams is an author, poet, artist, performer, graphic designer and disability campaigner.

Her books are available through this link.

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