Disability

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.

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.

‘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!

The new season of the popular U.S TV show ‘American Horror Story’ hits our British shores on 21st October, over on FX, in time to get us excited for Halloween. For those unfamiliar with the concept, ‘Freakshow’ is the 4th season of the AHS franchise which started in 2011, reusing the same cast over again but always with a different setting and storyline. Previous seasons themes include ‘Asylum,’ ‘Coven’ and a haunted house all designed to be creepy, sexual, funny and very different to anything else out there right now.

However, this upcoming cycles content has ruffled some feathers within the disabled community, and it’s not hard to see why. ‘AHS: Freakshow’ is set in 1950’s Florida centering on a group of people with obvious physical disabilities banded together in one of America’s last ‘freak’ shows. Some actors playing these roles are genuinely disabled, such as the worlds smallest woman Jyoti Amge, and others not, where recurring actress Sarah Paulson plays conjoined twins.

The use of the archaic word ‘Freak’ serves as a useful reminder to us of the terms that have come and gone, much like racially prejudiced terms, that are no longer acceptable in the modern PC age. This is a credit to our society, to recognise as a whole that these terms along with ‘crippled’ and ‘handicapped,’ are no longer acceptable; yet it is also unnerving to see published so brazenly again. As Howard Sherman puts it in his ‘Guardian’ article on this topic, ‘[freak] is a slur – and though it might be accurately portrayed on screen or on stage, it’s not yours to reclaim for someone else, even characters in a show.’

Especially when paired with the series promo poster, a ghostly looking misshapen foot next to the title ‘Freakshow’ (see above), gives the impression that we are to fear and gawp at. This is, after all, supposed to be the portrayal of a ‘horror story.’ Yet, what precisely is so ‘horrific’ about the disabled form?

After watching the first episode, it is apparent that the ‘freaks’ are supposed to provoke a feeling of unease in the viewer, yet they are also built up as multi dimensional characters. But this privilege is mostly enjoyed by the non-disabled actors playing disabled roles. Jyoti Amge, a 20 year old woman with achondroplasia, is permitted just a few lines in a bit part that is doubtful to last the whole season. Additionally, she is routinely picked up and carried around by cast members, fueling the infantilization of those with small stature. It does, frankly, reek of objectification.

Regardless, this popular television show has decided to put disability, and how those with disabilities used to be treated so callously not all that long ago, at its forefront. ‘Freakshow’s’ were something that happened in society, and to ignore that fact in popular culture would be the same as claiming it never existed.