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December 2014

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.

“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, Undressing Disability | 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.”

“I have Muscular Dystrophy and my girlfriend has Cerebral Palsy…”

By | Emily Yates, My story, The Love Lounge, Undressing Disability | No Comments

“I have muscular dystrophy and my girlfriend has cerebral palsy. We’ve been together 7 months and we need advice as to moving forward and getting more intimate. We both have severe disability and limited movement.” – Richard

Hi Richard,

Great to hear from you and many thanks for contacting the Love Lounge.  Finding intimacy that works can undoubtedly be more difficult when you and your partner both have a disability, but certainly not impossible! I have Cerebral Palsy myself and I am currently with an able-bodied partner, but I have had very fulfilling sexual relationships with other disabled partners too.

The biggest and best bit of advice I can give to you regarding taking steps forward in terms of intimacy is… talk to each other.  Finding out what works and what doesnt with sex is always going to be a method of trial and error.  When you are trying different positions, for example, make sure that you are both always communicating with each other to confirm you’re both happy, comfortable and enjoying what’s going on.

A wonderfully intimate relationship does not have to include penetrative sex either.  I’ve had some amazing sex without having intercourse.  Get comfortable laying with each other and telling each other what feels good and what you’d like to try.  Certain sex toys might make things really enjoyable whilst also allowing you both to be comfortable and not too physically active too soon.  Funnily enough, I’ve just been told about a voice-controlled vibrator that might help those with limited movement.  See what you think!http://www.honour.co.uk/silicone-voice-activated-vibrator-amy.php#long-description

Additionally, to help make certain positions more comfortable, check out Liberator ramps and wedges (a little on the pricey side, so they might just give you a bit of inspiration of similar products you could use at home) http://www.liberator.com/wedge-ramp-combo.html

Really hope this helps.  Please let me know how you get on and if you need anymore specific advice, just shout! 🙂

Emily x

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