Lifestyle

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.

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.