Disability

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.

Many of us with at least moderate awareness of the disability world are familiar with the concept of ‘devotees’ – a person with a specific sexual fetish related to disability or only interested in having relationships with a disabled person. This is usually relatively harmless when those involved feel safe, respected and are aware of one anothers intentions, much like in any other relationship.

But what happens when an able-bodied persons admiration for the disabled form transcends desire and becomes part of their perceived identity? This is where ‘pretenders’ and ‘wannabes’ come in. Both typically view themselves as being ‘trans-abled,’ where similarly to transgendered people they feel as though they have been born into the wrong body. They then often identify with one specific disability and then proceed to act it out either privately or publicly.

One such ‘pretender,’ only making himself known as Chris, was profiled in the recent American TV series ‘Seven Deadly Sins.’ Chris hides his pretender status from those around him but feels conflicted within himself when he is not in his wheelchair. Of his identity crisis he poignantly revealed that, “what I want my life to be like is what is the detriment of a lot of people’s lives, the worst thing that’s ever happened to them, and I think it would be the best thing that ever happened to me.”

Wannabes take things one step further and go to extraordinary lengths to deliberately become disabled, by perhaps amputating a limb or rendering themselves paraplegic, often with a very precise idea of the disability they identity with. A chilling post from DisabledPlanet.net’s ‘Wannabe and Pretender’s Forum’ reads: ‘I have seen a lot of amputee wannabe’s [on the forum] so far but, no paraplegic wannabe’s. I’m a 35 year old para pretender looking for chat. [sic] I’m serious about trying to get the job done. If anyone has any suggestions or ideas […] send a message.’

One blog entitled ‘Wheelchairconfession,’ tellingly unveils the link between devoteeism and pretending. For these people disability is not only their identity, it also excites them sexually. One blogger revealed that: ‘I told my girlfriend about my wheelchair. […] I started by telling her I had a fetish/fantasy about [having sex] while on my wheelchair. I proceeded to tell her that I’d like to try doing everyday things from a wheelchair.’ Another blogger laments the fact that he still keeps his pretender status secret from his partner but chronicles his excitement when she asks him to dress up in a pirate outfit, complete with a fake hook hand, in the bedroom. Infact, many ‘pretenders’ and ‘wannabes’ report having the sexual desire for disabled people first from a young age, which in turn progresses into the desire to BECOME a disabled person.

It is easy to see why people get riled up by ‘pretenders’ and ‘wannabes.’ Many truly disabled people find it hard to see why somebody would choose to have something that makes their life harder, or changed their life completely. They may feel like ‘pretenders’ do not understand the full seriousness of having a real disability and just enjoy the sympathy or attention stemming from it, or even that they are infringing on a culture that is rightly and wholly theirs.

However, the feeling of being ‘trans-abled’ is medically acknowledged as being a legitimate physiological condition known as Body Integrity Identity Disorder (BIID). Could this in itself then be acknowledged as a disability? Would there be limits on how these people choose to live their lives if they wanted access to the same amenities specifically reserved for genuinely disabled people? In a world where all minority groups are still fighting for their right to be heard and accepting people of all kinds is becoming increasingly regular dialogue in our society, should we just live and let live? There is, frankly, a Pandora’s box worth of questions and issues.

On one final note, an anonymous ‘pretender’ interviewed by ‘New Mobility.com’ had this to say: ‘Pretenders don’t hurt anyone, as long as they’re not trying to scam government benefits or taking services away from people who actually need them. We have a ‘fetish,’ an ‘interest,’ or even a ‘disorder’ — call it what you will, we’re just living our lives in the only way we really can.’

Recently, the Deaf community was rocked by the news of the savage murder of Christopher Pennman by Awat Akram. Both men were Deaf and the motive for the crime was supposedly jealousy over a woman they both had had a relationship with.

Akram stabbed Pennman multiple times while he slept, defenceless, in his bed. To add to the horror and hardship, Akram then went on to deny his role in the murder and mislead the police in their investigation. He has now been sentenced to life in prison – a minimum of 28 years.

Akram’s crime was clearly deplorable and he deserves to be punished while the public are protected from him. Yet, disabled inmates in our country are typically consigned to paying a much higher price for their crimes than their able-bodied counterparts.

The HM Inspectorate of Prisons (2009) found that disabilities are largely under-reported in UK prisons, with deafness being no exception. Many Deaf and hard of hearing people use British Sign Language (BSL) to communicate, yet a HM Inspectorate of Prisons survey found that just 16 out of 82 disability liaison officers said they had BSL trained staff to help Deaf prisoners with daily activities. Therefore, these inmates will likely find themselves in a position where few (if any) BSL interpreters are available to them during their time in prison, which may be for the rest of their lives.

The detailed 2013 study ‘Not hearing us – An exploration of the experiences of deaf prisoners in English and Welsh prisons,’ suggests that being denied the basic right to communicate, quite rightly, causes feelings of extreme isolation and loneliness. If deaf prisoners are not able to communicate, they are not able to fully assimilate into prison life which in turn reduces their likelihood of reform.

Despite prisons being covered by the Equality Act 2010 many Deaf inmates were still experiencing problems with access to education – a major tool in their rehabilitation. One hearing impaired inmate even claimed that he could not access 90% of prison classes without a support worker.

Enhance the UK believes that by implementing disability awareness training and sign language courses into prisons for prison staff, these issues can be more efficiently and economically dealt with than they currently are.

97% of all offenders say they want to stop offending and the biggest factor (68%) helping them do this is having a job and prospects. When you do not invest in a minority group in prison, much like in regular society, you are already robbing them of any hope of turning their lives around. When offenders have something constructive to focus on and a chance to better themselves, our community as a whole benefits.

About five years ago I took my 32-year-old friend, Andy, who has cerebral palsy on a trip to Amsterdam to visit a sex worker. Although he is funny, open minded and a football coach with a university degree, he was yet to have a sexual experience.

After the trip, he told me that he didn’t think it had gone well because he didn’t orgasm immediately and it surprised me that he would think that way.

It then made me realise that, along with many other physically disabled people, Andy is knowledgeable and sociable in many areas but when it came to sex he didn’t know the basics. This was not only because he had never experienced it, but also that no one had ever educated him. When I returned from Amsterdam I began researching what sex education was available for disabled people like Andy, but found very little. That really scared me.

I founded Enhance the UK in 2009 with the aim of changing society’s perception of disability as well as empowering and supporting physically disabled and sensory impaired people to live full, active lives. In 2012, we ran a campaign called Undressing Disability and produced calendars featuring all disabled models donning nothing but their underwear, poised in front of iconic London backdrops. We wanted to celebrate the disabled form while raising awareness of our inclusive Sex and Relationships Education (SRE) program in collaboration with leading youth sexual health and education providers, Brook, which is the backbone to our entire evolving campaign.

Currently, there is no UK government policy recognising that physically disabled young people require specialised SRE. In a 2013 survey we conducted, 69% of people thought their disability should have been taken into consideration in SRE and 100% observed that it was never even addressed. Physical disabilities are often placed under the same disability ‘umbrella’ as people with learning disabilities when in reality the two deserve and require different attention.

Physically disabled people who rely on full time carers to wash, dress and feed them run the risk of becoming desexualised despite them having regular, healthy, adult urges. Being looked after in this way makes those around them forever view them in a childlike way.

Through my own disability of degenerative hearing loss, I am acutely aware of the issues the deaf community face in terms of SRE. A recent survey by the charity Deafax found that 67 per cent of deaf people received inaccessible sex education and 45 per cent of those people said it was because they could not understand teachers. One deaf girl told Deafax that she didn’t know anything about sex, contraception or relationships when she left school. She said: “There was never anyone to ask who could explain properly to me in sign language. I didn’t know how many sexual partners were ‘normal’.”

As part of Undressing Disability we’ve launched‘The Love Lounge,’ a safe space on our website where users can ask our panel any questions related to sex, relationships and disability. No topic is off limits and we would encourage queries, not only from our disabled users, but their partners and parents too. We want to encourage discussion on these seemingly ‘taboo’ topics and create a caring sense of community.

We are pleased to introduce media personality and prominent disabled activist, Mik Scarlet and presenter and writer Emily Yates as our ‘Love Lounge’ experts. Mik and Emily are also two of our very talented disability awareness trainers so are used to addressing all kinds of issues.

The truth is that disabled people have sex and disabled people like sex. But they don’t have access to the same advice and support as their peers. We need to stop the stigma and address the ‘awkward’ questions nobody else will so that disabled people can enjoy safe, healthy and fulfilling sex lives, just like everyone else.