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To Suffer or Not To Suffer – That Is The Question by Holly Williams

By Disability, Lifestyle, My story No Comments

As a writer, I know that language is a funny thing, especially when it comes to what people find offensive. You can write what you believe to be a totally inoffensive article but because you pick just one wrong word, a word that in your opinion accurately describes a situation, and people will be up in arms. Recently I wrote a piece about a young man who had finally got a job at Asda after 950 rejections. It was based on a story in the Daily Mirror where he was described as a Cerebral Palsy ‘sufferer’ and this is also the term I used in my article. I sent it to a friend who advised me to change the phrase because it was thought of as patronising by certain disabled people. I altered it because I didn’t want to offend but for me personally I don’t have a problem with being called a Cerebral Palsy sufferer because that’s what I feel I am. I have Cerebral Palsy and throughout my life it has caused me a lot of mental and physical suffering.

I understand that there are a lot of people with disabilities who don’t feel like they suffer because of their impairment. They feel words like this make them appear the victim when they’re not and therefore promotes pity. While I can see where their coming from, I struggle to get myself in the mindset where the limitations of my physical condition don’t make me feel at a disadvantage and this causes me personal anguish. I want to do things for myself and I can’t because my impairment stops me and I find that very hard to live with. I have muscle cramps and postural problems that makes me suffer from physical pain. I suffer from Cerebral Palsy therefore I am a Cerebral Palsy sufferer. That doesn’t make me a victim or someone to be pitied but I am not afraid to state that there are things about my life that I do not like and can’t accept. I call myself a sufferer not because I think my life is of lesser value but because I am aware of my reality.

I sometimes feel a lot of disabled people are afraid to admit there is something wrong with them because by doing so they feel like society will devalue them. We don’t want other people to have an issue or feel sad about our disabilities so we feel like we can’t feel bad about them ourselves. We have to ‘set an example’ to prove we’re ‘just like everyone else’. But for me, and I suspect a lot of other people, we don’t feel like everyone else. The social model of disability is great in some ways, it states that society should give everyone the same opportunities and adaptations should be made to include people with impairments. But even if by some magic force it came totally into being and we viewed disabled people the same as everyone else, would it really change the way some disabled people feel about themselves? Even if the right assistance was provided, problem free, at the end of the day, some people need that assistance while others wouldn’t. I can do anything with help but I want to be able not to need help. No amount of social change will change that feeling within me. It’s my desire, my longing, society didn’t put it there.  

Yes, the word ‘sufferer’ is problematic for many people but by fighting to omit it completely are we in danger of alienating those disabled people who do feel like they’re suffering because of C.P or whatever other disability? By saying ‘I am disabled, but it doesn’t cause me suffering,’ are we putting judgement and pressure on those who aren’t as strong when it comes to dealing with the challenges they face? Just because a proportion of the disabled populous believe that being a ‘sufferer’ makes them a victim in others eyes, does that give them the right to discredit the feelings and experiences of those who feel differently and want their personal difficulties to be recognised this way? Is it really fair to say ‘I don’t feel I suffer from my disability so you can’t either. You’re letting the side down.’ Isn’t that just making a character judgement on another people’s experience of the world?
Words alter their affect and meaning all the time. What was once okay is in later times sometimes considered offensive. Controversial words can also sometimes be reclaimed by groups that they were once used to insult. Very few white people today would feel okay with using the ‘N’ word and yet certain black comics and rap stars use it frequently. Do they have to answer to an older generation for whom it held a different, more oppressive meaning or does their skin colour veto the offence it might cause others? They say it’s wrong to label other people but do others have the right to tell us what we label ourselves.

Those who claim that language such as ‘sufferer’ promotes pity need to remember that sympathy for someone you view as less fortunate isn’t in itself a bad thing. It is a basic component of civilised human society. Yes the reaction may be misguided at times but the intent is pure. For every self- assured disabled person who doesn’t want to be allowed to the front of the queue because they find it insulting there will be another, like me, who will see it as an act of kindness. Does objecting to small gestures and misused words really further the cause of equality or does it make us seem petty and militant?

Maybe the papers and I were wrong to describe the person in the story as a ‘Cerebral Palsy sufferer’ but it isn’t because the phrase is wrong. It’s because we can’t be sure of the challenge and experiences of this individuals life and how he views his impairment. He might not consider himself a sufferer but then again he might. And if it is the latter, as it is for me, does anyone truly have have the right to tell him otherwise because it differs from the way others see themselves?

The Unwatchables by Holly Williams

By Disability, Lifestyle, My story No Comments

There is a particular branch of media known as ‘car-crash entertainment’. Films and TV programmes that for one reason or another cause their audience a masochistic mental torture and yet still have the ability to keep them watching. In fact, one of my favourite podcast is totally dedicated to analyzing and celebrating movies that are eye-wateringly terrible. But also in this category, I would place the Channel 4 series The Undatables which returned to our screens this Monday. It’s series 5 for the show that follows individuals with a variety of conditions as they search for love and romance and while I have watched it from day 1, I can’t honestly say that I enjoy it, mainly because I find the subject matter and the way it’s handled difficult to take.

Now, don’t get me wrong, I believe that everyone, disabled or not has the right to look for love if they feel that having a partner will make their life complete. I also think that if they choose to do that process on national TV that is also entirely up to them. And in theory, any programme that is showing that disabled people have the same feelings and desires as anyone else has got to be a positive and enlightening thing. But watching The Undateables leaves me, personally, feeling that the whole attitude of the programme-makers towards the subject is one of cutesy-whimsy and wry amusement. Yes, they do show that people with problems can find love like everyone else, but it’s always with a look of light-hearted superiority and voyeuristic curiosity that reminds me strangely of the old PG Tips chimp adverts or those antiqueillustrations of black people in western dress. A tone that seems to smile at the audience and say ‘Look, they’re talking about what they look for in a partner, they’re getting dressed and made up for a date. They look so much like you and me, isn’t it adorable?’ The whole programme is dubbed with that God-awful comic ‘plink-a-plonk’ music that sounds ripped straight from a CBeebies show, underscoring and prompting that the audience should find the daters interactions and social awkwardness amusing. But anyone who has been on a blind date (and even those like me who haven’t) knows that a first date is an awkward nerve-wracking environment so why do we need it pointed out? What are we meant to do? ‘Look, the conversation is drying up and he doesn’t know what to do because he has learning difficulties! LAUGH, DAMN YOU, LAUGH AT THE FUNNY CHILD-MAN. It’s okay because we’ve just shown you he’s normal because he likes football and fancies Holly Willowby, so it’s not demeaning.’

Yes, first date nerves are something pretty universal that might be seen as a leveller between the disabled people on the show and the audience at home and like I say everyone deserves a chance at love no matter what challenges they have. But I can’t help but have an issue with the types of disability shown on the show and question the motivation behind why the programme-makers choose who they do. They do, after all, want to make as entertaining and ‘upbeat’ show as possible. But you have to question, with this motive in mind, is having your first meeting with your prospective boy/girlfriend filmed for broadcast really the best way for them to find a relationship that lasts after the cameras stop rolling. Looking over the lonely hearts who have appeared on the show in the past, it seems like a good majority of them have learning difficulties or autistic spectrum problems. Many of these people struggle with understanding and dealing with the delicate norms of social interaction at the best of times, let alone doing so under the watchful gaze of a camera and film crew. Yet their struggles make good TV so who cares if being watched has an effect on how they deal with  forming a relationship that will last longer than the episode? Those with Tourette’s Syndrome are another favourite group for this programme and it’s easy to see  why. Here we have people whose impairment doesn’t really affect their physical ability to go out on a date but whose ticks make more amusing viewing. I’m not saying that Tourette’s isn’t an exhausting and debilitating condition to live with. It must be a constant frustration to never know what is going to come out of your mouth without warning. But people with Tourette’s can go out and spend time with a prospective partner without the need of an assistant or chaperone which makes things a lot easier, especially for this programme. Their condition can be reduced to an amused quirk, their funniest ticks selected and edited for affect.   Yes conditions on The Undateables are varied, but you aren’t likely to see a severely physically impaired person who needs 24 hour care looking for love because it’s a great deal harder to show a romantic date between two people and the additional third wheel of a carer. It’s one of the reasons I choose not to date but even for those in my position who do, the extra addition of cameraman, sound guy and director would turn the event into less of a date more of a group activity. A pretty overwhelming prospect for the other person.

And while we’re on the subject of the able-bodied people on the show, one has to consider their motivation and what the whole experience is like for them. There are cynics (aka my mother) who suggest that  the whole reason they agree to go one these dates is to show what nice people they are to consider being in a relationship with a disabled person or just have  the opportunity of being on TV. But even if that isn’t the case, even if they initially saw that person’s profile and thought they were someone they would like to get to know, there’s always the chance that they might feel differently by the end of the date. It could be they couldn’t accept the other person’s disability, it could be that spark of attraction just wasn’t there. The problem is, knowing that their date was going to be viewed by thousands, would anyone want to be seen as admitting that they wouldn’t want to go out with a disabled person again? That’s what would be going through my mind if I was on this show. Even if the person I met seemed to really like me, I would have a little voice in the back of my head reminding me that our date was going to be broadcast and that the other person might just be trying to make sure that they didn’t look bad on TV.

It’s not that I don’t believe that some of the relationships that come out of the show aren’t genuine. I’m happy for those couples who have found love in this particular way. It’s just that I’m overly aware that being a TV show, the whole way that these relationships begin is contrived and orchestrated. A friend of mine attends a disco for people with learning difficulties and at one event, there was a researcher from Channel 4 going round looking for people to be on the show, asking them if they would like a boy/girlfriend. To me, that seems to reduce love to a commodity, looking to prompt people’s desires and feelings just to get content for the show. I don’t have a problem with companies like Stars In The Sky who exist to help people find partners because that is their soul purpose but when such companies align with Channel 4 they are consenting to another agenda, an agenda of allowing their clients search for love to be viewed as entertainment.

I’m in no doubt that all the people who appear on The Undateables go into the process with open eyes and, if needed, the right support to deal with appearing on television. Perhaps the problem lays with my personal notions of privacy and relationships. We live in a world where people can and do share details of their private lives with a wider public via Facebook and similar sites. This is something I find very odd as I stick to the old-fashioned notion of a romance should develop between two people and has nothing to do with anyone else. This doesn’t seem to be the case with many others and that’s their choice. This week also saw Channel 4 launch a new series of First Dates, The Undateables for the able-bodied if you like, proving that many people are happy to look for love in the spotlight of the media. But perhaps if this is the new face of 21st century love we should combine these shows together instead of isolating the concept of disabled people dating as a novelt

In the beginning there was darkness… by Gary Mazin

By Disability, Lifestyle, My story No Comments

 

Then..

There was light.
My crusty eyes opened slowly, and I quickly closed them again as the room was bathed in a bright white glow that bounced off the mirror and sent my head spinning.
I slowly cracked open one eye to see the sun pouring directly in through the window, giving the room a pure white heavenly glow, the white walls reflecting the sunlight in a pattern that bounced off the ceiling and onto my bed.
I slowly opened both eyes and adjusted my eyesight sideways to look at the digital alarm clock a few feet away. The digits were crystal clear and read 8:48. Still too early. It’s Saturday. Nothing to get up for.
I turned over and saw the book I was reading resting on the dresser in the corner of my room. The Vampire Lestat by Anne Rice. The text was crystal clear, as if it was just inches away, not across the room.

..
I shouldn’t be able to read that text. I looked around the room and realised that I could see the label on my shirt that was crumpled on the floor on top of my trousers, 40 degree white wash only. Clinique M Lotion, Vaseline Deodorant. I shouldn’t be able to see all of this.
I can see.
HOLY MOTHER FECKIN CHRIST ON A BIKE
I can bloody see.
What the actual holy shit.
I can still see. I can actually bastard see.

I scratched around for my glasses, and put them on and everything became blurry. I took them off and the world came to life again.

I jumped up from the bed and ran into the bathroom, I looked at myself in the mirror, my features were sharply staring back at me. My hair was all ruffled and I had a massive black head on my nose. But I didn’t care, I could see it so clearly.

Feverishly I splashed water on my face, convinced I was in some dream. I stared back in the mirror and looked around. AMAZING. I could still see EVERYTHING.

Running downstairs whooping with joy I nearly bumped into my Mum in the kitchen.
“Mum, you’ll never guess what”, I screamed.
“Morning, you got in late last night. Drunk again I presume due to the noise you made just getting up the stairs.”
“Yeah, sorry. Anyway. Mum I don’t know what’s happened, but I can see this morning.”
“What?”
“Yes, I know. I can see. Everything is crystal clear. Do you think my eyes are OK?”
“Errr, I don’t think that’s possible Gary. Are you sure you can see?”
“Yes, I’m positive Mum, have a look.”

My Mum approached me and looked at my eyes, her own eyes searching for some answer. Her face showing complex emotions of worry, sadness and a glimmer of hope.

“They’re really red and bloodshot, Gary. How much did you drink last night?”
“A lot, but that’s beside the point. They’re a bit itchy though”

I strode purposefully to the downstairs toilet and stared at myself in the mirror. My eyes were red-rimmed and bloodshot, I looked like the vampire Lestat in human form. My face was white and puffy. I leaned in closer.

OH. SHIT. BOLLOCKS.

“Gary, language” Mum called from the kitchen.

I reached into my eye with my finger and felt a very dry crustyness. My finger hit something plastic and then there was a loud schlurpick sound as my contact lens was ripped from my iris. It felt like my eye socket had fallen out along with my contact and I had to quickly check the mirror to see that my eye was still where it should be. In my head.

I pulled the other contact lens out with another loud sucking sound that felt like my intestines were being sucked out through my eyeball. A sudden wave of nauseousness hit me and I turned to the toilet and retched the contents of my alcohol and kebab filled belly.

A few minutes later I stood up washed my face and looked in the mirror.

The world was blurry again. My eyes were still broken.

“Are you OK Gary?” Mum called out from the kitchen with a hint of concern in her voice, clearly having heard me return the contents of last nights exploits into our cistern.

“Yeah, I’m fine Mum. I slept with my contacts in. My eyes feel horrible and dry. My eyes are still buggered I’m never drinking again. Port and Brandy is lethal.”

For those delightful few minutes, I thought I was normal. I believed that by some miracle I had awoken to discover that my eyes were fixed. Not just my short-sightedness but my tunnel vision too. I convinced myself that I was normal.

I was 21, still a long way from coming to terms with what Ushers Syndrome was or how RP (Retinitis Pigmentosa) was truly irreversible. I had convinced myself many times that I’d be OK. And on this morning, I thought that my eyes had been fixed.

After that I never slept with my contact lenses in again and despite the hangover and copious amounts of bile that ejected themselves forcefully from my growling stomach, I always remembered fondly those few precious minutes when I felt normal. My eyes were fixed, I was like everyone else.

You might be thinking that was just a silly embellished story about how a young drunk Gary slept with his contact lenses in, big deal. But you have to understand that I was a very different person then.

It was about that time that I started drinking and smoking quite heavily. I  remember having conversations with some of my friends, all of whom hated smoking and drank a lot less than me.
“Smoking isn’t good for you. You’re killing yourself”
“You’re just going to send yourself to an early grave drinking and smoking all the time”

My extremely mature response was “Well, I’ll be deaf and blind soon so what’s the point of worrying if smoking kills me?”.

That was my standard response to most things at that time, “Well I’ll probably be blind by the time I’m 30 anyway, so who cares”.

Fortunately I had a very good bunch of friends and family, and me going off the rails didn’t include any Class A drugs or rehab. I suspect that most people didn’t think I was going off the rails and rebelling at all, and just thought I was being a typical 20 something man who hadn’t fully grown up yet.

I was 15 when I was first diagnosed with RP. I remember the visit to Moorfields very clearly. This was in the mid 80s and you have to understand that not only was RP and Ushers a very newly discovered disease, there were many aspects that weren’t fully understood. Technology was also not fully utilised within the medical profession and they were using some concepts that had been used for decades.

My visit to Moorfields reminded me of One Flew Over the Cuckoos Nest. I was Jack Nicholson and was prodded, poked, pushed, pulled, tweaked, prodded again and more and more people in white coats were coming in looking at my eyes, mumbling and then walking away.

I still have memories of lying back in some dentist chair, with electrodes on my face, and some wires actually sitting on my eyeballs. A light was periodically flashing brightly on the wall and every time I blinked my eyes and body received a small electric shock. Apparently this ‘test’ was to discover how my eyes reacted to bright bursts of light. Not very well as it turned out. Who knew?

One of the doctors sat me and my family down in an ironic twist a very dark room, and point blank explained that I had RP, a hereditary disease that causes permanent sight loss. The particular nuances of what followed were lost on me. The reason for this is I distinctly remember the doctor saying:
“Really, you shouldn’t worry too much about it Gary. It shouldn’t affect your life for now. Unless of course you want to be an Airline pilot when you grow up. What do you want to be?”
“An Airline pilot” I murmured.
“Oh. Well perhaps you should think of other ways you could work in that type of field. Hmmmm?”

His bedside manner wasn’t the best. And so as a 15 year old boy I knew my eyes were broken. Over subsequent visits over the coming years I found out that RP was just the tip of the iceberg of my disease and it was actually called Ushers Syndrome, which affects hearing and sight loss.

Since then, I’ve visited Moorfields every 6 months or so. There have been times when there have been a few years between visits. “What’s the point. They can’t fix my eyes, so there’s little point in getting electrodes put on my eyeballs again.” I often convinced myself.

But over time I’ve accepted my fate, and realised that it’s important for me to check-in to Moorfields. It’s a learning hospital, and all my tests that are conducted are logged and looked at by very clever people. Every year we hear about a lot of money and time being spent on finding a cure and possible treatment. Which might be getting closer and closer. It’s been posted in the news that a woman in the UK has just had a retina chip, or bionic eye as the news likes to sexy up the quite technical complexity of the operation. It’s clear that there are some clear signs of positive progress for helping people that have this horrible disease.

So probably not for me, but for future generations it will be good if they could wake up one day and have their miracle realised for real, every single day for the rest of their lives.

 

Had I Known Then What I know Now by Simone Mazin

By Disability, Lifestyle 2 Comments

I am a happily married Essex girl with two gorgeous children. I am 44 years old. I spend most of my time trying (and often failing) to juggle work, family life and housework. I drive too fast, am always on a diet and am known amongst my friends as being a bit of a scatter brain.

And I am my husband’s carer.

Oh sorry. Did I forget to mention? My husband is blind (or Severely Sight Impaired to use the proper term) and the proud owner of a Black Labrador Guidedog called Gibson.

To give you a bit of background information, my husband was diagnosed with Usher Syndrome – a rare genetic disorder – when he was 14 years old. The main symptoms of Ushers are hearing loss and Retinitis Pigmentosa (RP) – a disease of the eye that leads to loss of vision and blindness.

I think my husband would agree, the journey from that initial diagnosis and where we are today has been far from easy.  Being a teenager and being told you have a degenerative disease that means you will eventually lose your sight and hearing can be devastating. People tend to deal with this kind of news in different ways. In my husband’s case, he mostly chose denial. For years he was able to fool an unsuspecting public that he was able-sighted and most definitely NOT DISABLED. Working and socialising in London, he managed to live a fairly ordinary life; only occasionally walking into bollards, knocking over passers-by and getting run over*.

But RP is a mean, fucking bitch and as predicted, his sight started to deteriorate and walking through Liverpool Street unaided during his daily commute was no longer feasible. My husband registered as being SSI, I become his carer and five years ago, Gibson came into our lives.

Being your partner’s carer is an interesting role and something that’s taken me a number of years to perfect. I’ve had to learn stuff. And fast. There’s a whole host of facts about my husband’s condition on the internet but it’s often ‘worst case scenario’ kind of stuff. And as much as I personally would welcome some easy to read information, I’m not sure if there’s a gap in the market for a Retinitis Pigmentosa For Dummies reference book

Back in the good old days, I would often get my role as carer wrong. Grabbing my husband and yanking him back when I could see he was about to walk into something or someone was most definitely wrong. But not reacting quickly enough and allowing him to be ‘attacked’ by some low hanging branches was also not exactly helpful. And those that know my husband would agree – he can be a stubborn bastard. Particularly in the early days when he was desperately trying to convince the world he was A Normal.

I have to be honest, when I was single and compiling my wishlist of attributes I wanted for my future husband, having a disability wasn’t exactly high up. Admittedly, whilst living with somebody who has a disability can have some benefits (our blue badge has helped us get some wicked parking spots), it can also be a massive pain in the arse.

Don’t get me wrong. I love my husband – almost to the moon and back! However, it is exhausting having to carry out a mental risk assessment every time you leave the house, tedious to explain to acquaintances that the reason my husband ‘blanked’ them was because he didn’t see them, not because he is rude and genuinely upsetting when my husband walks into something and hurts himself.

The nature of my husband’s condition means there is a high probability he will lose his sight completely in a few years. This is the point where I happily bury my head in the sand. As deep as it will go. If I allow myself to think about this fact for too long and the consequences for my husband and my children, I wouldn’t be able to cope.

So we live our lives, taking each day as it comes and try to enjoy each and every moment. To quote a quote I once found on Pinterest: “Every moment we spend worrying about tomorrow is a moment we lose from enjoying today.” Pretentious? Yes. True? Absolutely.

So what would I have done if I had known then what I know now?

I honestly wouldn’t have changed a thing.

 

 

* Getting run over was a very rare occurrence thankfully. But it did happen. On more than one occasion.

Claire Holland Head of Training

God Will Heal me? by Claire Holland

By Disability, Lifestyle, My story One Comment

I hardly ever write about my own experiences around being Deaf mainly because having read so many fantastic blogs on the topic I find that I have little to add to the subject which hasn’t already been written about before. But today’s different for me as I want to share an experience I had this week and I hope that by writing this blog it will help me reflect upon how I actually feel about it. You see, I simply don’t know how to feel. One moment I am angry, then I feel pity towards the other person involved, then I feel a sense of disappointment swiftly followed by thinking that I simply shouldn’t allow myself to feel anything about it at all. But this is easier said than done.

 

What could happen which could cause so much turmoil I hear you ask? Really, it wasn’t anything major, just a chance conversation with a woman outside a shop in London. I was rushing around trying to buy my Secret Santa, stressed because I had forgotten it and needed it before I arrived at work when I practically bumped into a lady. She muttered something which I simply didn’t catch so I explained that I hadn’t heard what she had said and that I am Deaf. Straight away she put her arms out to embrace me, rubbing my arms softly and clearly said. “Oh, you must have been bad in a past life, don’t worry if you are good in this life, God will heal you!”

 

Wow … I would like to say that I said something to register my discomfort or disagreement with her but I didn’t. I simply stood in shock before walking away. I thought about this conversation and my reaction the whole way to work and am still pondering it now. You see, the comment was not made from a bad place; the lady was clearly trying to be kind. And yet I find it one of the most offensive things that has ever been said to me.

 

Whilst reflecting on my response to this in bed that evening, a memory popped into my head. I must have been about 9 and was reading my children’s bible. I read about the story about Jesus putting mud on a blind man’s eyes and telling him to go to Siloam and wash and the man was healed and was able to see. I vividly remember thinking ‘why can’t I be healed?’ You need to bear in mind that I was at a time in my life where I was unable to see any of the positives of being deaf and had not formed a positive self-image yet. I used to think that if I had a genie and 3 wishes, my first would be to be able to hear. As I grew up, I realised that my deafness has shaped my experiences and has been integral in making me who I am. It is central to my identity and something which I would never want to change or deny as by doing that, I believe that I would be changing my essence.

 

During Religious Education classes during my teens I struggled with the idea of healing. I couldn’t understand why Jesus would want to heal people and believed that this was implying that people with disabilities were not perfect as they are. Now I am older I can see that there can be a difference between healing and curing and that this is not an area which is black or white. I can also understand why some people themselves may want to be healed or want their loved ones to be healed.

 

The idea that I must have been bad in a past life implies that my deafness is a punishment for a sin which personally, I find abhorrent. I googled this before writing my blog and from what I can see the bible appears to be inconsistent on this (although I am the first to acknowledge that I don’t have any deep understanding of the bible as I am not religious). I believe myself that like all religious books there is an element of being open to interpretation and on the whole this is a powerful and positive thing. I have focused on Christianity during this blog simply because this is what I grew up with.

 

I suppose the conclusion I can come to is that religion is a deeply personal belief and that everyone is entitled to their own beliefs. Who am I to tell the lady her belief’s towards what she sees as my disability is wrong? On the other hand who is she to make assumptions about me? Writing this blog has helped to alleviate my anger. I believe her response towards me was made from simple ignorance. She was unaware of how insensitive she was being. Wouldn’t the world be a better place if we all had a bit more awareness? Which in itself is the reason that I am so passionate about the work we do at Enhance the UK?

 

 

“I am severely visually impaired but I am so able that many people don’t realise how bad my sight really is.”

By Disability, Lifestyle No Comments

“I am severely visually impaired but I am so able that many people don’t realise how bad my sight really is. I’m single and readily dating but I am also quite shy until I really know a person. Because of my sight I highly prioritise touch when becoming intimate with someone. How do I bring this up with someone new without looking like a creep?” – Abby, York

I would always take the honest approach Abby. I think you might find people have no worries about you preferring touch. It actually sounds rather sexy. I would just tell them you are visually impaired, and that means touch is what turns you on and see where it goes. Don’t let your worries about how people might react prevent you from finding out how they WILL react. Also if someone does react negatively then you’ve been saved from wasting time on someone obviously not right for you, so you win either way.

 

Download the Undressing Disability ebook

#UndressingDisabilityBook

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This week we’ve been celebrating the online release of our book Undressing Disability.

We’ve compiled the stories from 19 of our users chronicling the highs, lows and hilarities of living and loving with a disability. Thank you so much to our contributors who worked so hard on their unflinchingly honest and heart felt stories. We’ve tried to get a diverse representation of genders, sexuality, disability and experiences and we hope that you’ll find that we’ve done just that.

We’ve also put some of our Love Lounge problems in for good measure so you always have Mik and Emily’s ‘non-expert sexpert’ advice to hand.

Don’t forget you can always write in to the Love Lounge here.

All proceeds from the book go directly back into the charity and go on to help people like Sophie who don’t stop craving love just because they’re disabled. With our help Sophie was able to regain the confidence she had before she developed her disability by having somebody listen and give advice on a topic that a lot of people just don’t know how to handle. Sophie is now happily engaged.

Get Undressing Disability now on your Kindle or e-reading device now for £4.99 or order a limited edition hard copy plus ebook for just £9.99

 

February 9th 1995 lobby of parlimant image - police grabbing someone in a wheelchair.

The Disability Discrimination Act – 20 Years On A Long Way to Go?

By Business, Disability No Comments

It probably hasn’t escaped your attention that 2015 marks twenty years since the Disability Discrimination Act (DDA) 1995 came into place. Old footage unearthed by the BBC shows inspiring and vigilant scenes of disabled people at the 1995 lobby of Parliament standing their ground and fighting for what they believe in. Not unlike what we have seen from the suffragettes or the black civil rights movement.

The DDA has since been replaced by The Equality Act 2010, but this marked the first time full civil rights for disabled people were formally acknowledged by law. Thirty years after the Race Relations Act 1965 and twenty since the Sex Discrimination Act 1975. Yet another reminder that the needs of disabled people are firmly at the bottom of the list in terms of civil rights and how change comes just that extra bit slowly.

Core concepts in the DDA include “less favourable treatment” related to a person’s disability and failure to make a “reasonable adjustment” (in the workplace or with a service provider) to accommodate a person’s disability, and the two go hand in hand. These “reasonable adjustments” would naturally include things like installing ramps in shops or ensuring hearing loop systems are in place at universities.

These are basic rights, documented in a discrimination act twenty years ago no less, to enable disabled people to contribute and participate in society. It is maddening to walk into big businesses and institutions, in this century, who have not given accessibility a second thought. Or in some instances, even a first thought.

Where “reasonable adjustments” haven’t been made, be that due to funding issues or otherwise, accessibility for a disabled person has not been catered for and that then falls under “less favourable treatment” of a disabled person. It is a never ending cycle of discrimination where somebody is left unable to do their job, access education or even buy themselves some clothes.

Here at Enhance the UK we don’t like to scare people with the repercussions of the law or beat you over the head with policies. We do however want to raise awareness of the fact that prejudice of this magnitude would not be tolerated against any other minority group.

We are fortunate enough to live in a society where multiculturalism is celebrated and

we are now in our fourth wave of feminism. Our society balks at police brutality against racial minorities and sexist ‘lad mags’ are now off our shelves after ruthless campaigns.

 

Let’s show that same passion for disabled people and their rights.

 

Shall we play a game

Shall We Play A Game? by Gary Mazin

By Disability, Lifestyle No Comments

Growing up in the 80s I spent much of my errant youth glued to a television screen, playing one of the latest video games with my friends. Being totally immersed in the latest game, whether it was Sensible Soccer, Streetfighter II Turbo or Chuckie Egg, I was a proper video game junkie.

Then there were the Game & Watch games, where Mario and Donkey Kong became instant take anywhere classics. I embraced the games revolution like most teenage boys at the time.

But then slowly I began to realise that my hand to eye co-ordination wasn’t great and I found it difficult to focus on fast moving games. Most of these early games were very basic compared to what we are used to seeing now and I managed to adapt and try and keep up.

I started to understand that the games I enjoyed playing were the slower paced ones, where you had time to think. I used this excuse because I always said I enjoy more of a cerebral experience, but really I was just plain rubbish at all the action games. The reason, I have come understand was to do with my disability. As someone who has dual sensory loss, games have always been a constant challenge for me, particularly games that require lightning quick reflexes and being able to think quickly and act even quicker.

The first time I noticed that I had serious limitations was when I first played an arcade game that used a light gun to shoot things on the screen. Can’t remember the name – we’ve all played them at some point. I put my token in and picked up the gun, and then wham – noise and things flying all over the screen. 30 seconds later the dreaded ‘Game Over’ sign drifted into view. I had killed one thing that I saw and missed pretty much everything else. All I can say that in a Zombie Apocalypse my only hope is that the zombies come straight at me really slowly one by one!

Shoot, Kill, Die. Game Over.

Shoot, Kill, Die. Game Over.

So arcade machines were generally off limits, I spent fruitless hours staring at these loud shouty glaring things that just made me want to curl up into a ball and hide. That’s when I discovered that actually much as I like games, I hated arcades, could someone please turn the lights up and turn the noise down. See, I was a grumpy old man even in my teens.

I never really thought that there might be other people around that had the same problem as me, I just thought to myself “well if you can’t play those type of games, what can you play?”. So quite simply I ended up playing the games that gave you time to think and didn’t rely on quick reactions. So my whole gaming philosophy changed, I looked on enviously at some of my friends playing all these full on action games and much as I wanted to have a go, whenever I got the chance I ended up dead very quickly and usually embarrassed with my godawful lack of skills.

I understand that there are people that also just don’t like action games and enjoy the slower paced games, but I also feel a bit cheated that I never really had the opportunity to enjoy them, there was never really an alternative for me.

Fast forward to current day and I sit and wonder whether things have changed. Are games more accessible for people that have disabilities? I imagine it’s quite a difficult problem for many games developers, as there are so many different types of disability. It’s not like they can all just do one thing that will make their games accessible, some people have sensory problems like myself, others cognitive, and there really is not a catch all way for games to be instantly accessible for everyone.

Even now I avoid games that require fast reflexes, as I’ve matured as a gamer (not in the real life sense) it’s easier for me to brush off any advances of playing the latest Call of Duty or Assassins Creed as me being too old for any of that guff. But I sometimes yearn to play those games as someone who is able bodied, without the restrictions of my eyesight, reflexes and hearing getting in the way.

I recently tried to play a very popular RPG called Skyrim on my PC, it does give you the ability to take your time and you don’t necessarily have to have super fast reactions. But what do you do need to have is spatial awareness and the ability to see what’s happening on the screen. I would love to tell you I had a thrilling experience, but after playing it for over an hour I was still on the very first level, and constantly walking down dead ends and getting stuck in corners and just basically not being able to see where I was going. Talk about art imitating life. Do I really want to spend my gaming time walking around like a blind man plodding around aimlessly hoping to kill things that I stumble upon? It doesn’t sound like much fun, and it really wasn’t.

A typical dungeon in Skyrim, where's the bloody light switch!

A typical dungeon in Skyrim, where’s the bloody light switch!

Where does that leave us now, in terms of accessibility and games? In my experience there still seems to be a lack of involvement by the games industry, and I decided that it would be a good idea to find out. I’m by no means an expert on the subject, but luckily for me I have been speaking to Ian Hamilton who is an expert on accessibility in gaming, and spends much of his working life as a consultant for the games industry. For a different perspective I also spoke to James Kaye, the Director of Big Ideas Machine a PR & Marketing agency who work extensively within the games industry. So I thought I’d ask them both some questions about the subject to discover their views and also see if they agree on the main issues.

Q. One of the main problems that I see is that there isn’t a single disability, or a simple fix that would make all games accessible. Do you think that the intrinsic nature that the whole area of accessibility is difficult to address that makes it harder for games developers to know what areas to address?

Ian: It’s not really too difficult, it becomes far more difficult if you start thinking about individual medical conditions. But they aren’t really relevant. For example Parkinsons and long sightedness. Two completely unrelated conditions, but if you can fix the barrier of small fiddly interfaces, you’ve improved access for both of those conditions, and many more.

Where it really gets interesting though is the nature of games, rather than the nature of accessibility. For other industries, such as web or construction, there’s a set bar, a level of what’s regarded as an acceptable level of accessibility. In games, you can’t have that. It’s because for a game to be a game, there must be some kind of challenge and goal, some kind of a barrier, or it wouldn’t be a game, it would just be a toy or an interactive narrative. And what that necessary barrier is varies greatly from game to game, mechanic to mechanic.

James: I think it is simple a case of what is also economical and the lowest common denominator. What I mean by that is that if you find out a huge swathe of your potential audience has some kind of vision impairment (to whatever degree – from colour blindness and beyond) then there may be a case to invest time and money into making the game more accessible. I think the simple reality is that for many small developers, they are either unaware of disability issues or simply have not got extra budget to make the necessary changes.

Q:How do you think games publishers can publicise that their games are more accessible? Iit seems to be that there’s a serious lack of information that’s easily available for gamers with a disability.

James: In the case of mobile then I would be approaching Apple and Google and actually starting an initiative with them to add clear markings on the App Store or even have a dedicated category. On a simple level, game devs can make it clear in their app store descriptions, screenshots and video that the game is suitable for certain types of disability. I would also think about partnering with key influential media to ensure they support the games or make their disabled audience aware that they even exist.

Ian: It’s a huge issue in games. It’s not like for example DVDs, where you can just pick up a DVD and see at a glance whether it has subtitles. Despite the meteoric rise in awareness and implementation, it’s still really rare for developers to actually tell anyone about work that they have done. With serious consequences. For example, when the popular mobile titles Dots and Flow Free launched they were met with a barrage of complaints on social media from people who were colourblind and could not play the games. Both titles actually had perfectly good colourblind modes, but consumers just didn’t know to go looking through the settings menu to find them. As James mentioned, if this was clear on the app stores, then this situation would have been avoided.

Q: Growing up with a visual impairment I naturally deviated away from the action games as I just couldn’t play them, do you think that this is a problem that still inherent in the games industry today?

Ian: Yes, it is. There are some games that offer a high contrast mode, such as Street Fighter 4, Epic Eric and Shoot1Up, and others (predominantly MMOs, such as EVE Online) that allow interfaces to be scaled up, but they’re a very rare exception. Size and contrast are really common complaints in gaming.

James: Not at all on mobile. If anything, mobile is a much slower experience because faster games have not traditionally been that prevalent although they are appearing. I think that these days, there is such a massive choice of high quality games on Steam and the app stores then there is something for everyone. The reality is that there is such a massive spectrum of possible disabilities  that some games, such as ‘twitch’ based FPS action games will remain locked off you someone such as yourself simply by the very nature of what they are, no matter what the developer does. Luckily, you have channeled your passion into other types of game!

Q: With the advent of mobile gaming and more and more people playing games on smaller screens, do you think that this is actually causing more of a problem for the games industry, as it’s harder to make games accessible on smaller devices?

James: Once again, it really depends on what the accessibility requirements are because different types of disability will have different needs. That said, the advent of Chromecase and Apple TV means that mobile games can now be projected onto large home TV’s with  larger dedicated console style controllers that work with them. In this regard, I think is is a huge positive for many disabled gamers to have the ability to play in larger screens with better input devices. That said if you are hearing impaired then no sized screen will make up for a lack of subtitles.

Ian: Not really, as small screens force designers to think in a reductionist way, and think about people experiencing the game in a different circumstance to the circumstances in which the game was designed (i.e. on a small screen Vs a 28 inch mac monitor).  There’s also the realm of situational impairment, so for example people playing in direct sunlight, without headphones, one-handed while holding onto a subway handrail and so on, more and more reasons why the kind of considerations you would make for people with physical impairments are just good design for the wider game playing audience too.

As always mobile devices are a bit of a double edged sword.. the direct interaction is great for some people, in particular those who have difficulty understanding the metaphor of a controller, but a big blockers for others, who aren’t physically capable of performing things like swipes and pinches. The touchscreen makes the device ideally suited to blind users, as the way that screen readers work on touch screens is ideally suited to navigating interface games.. but the way that most game engines render out their visuals blocks the screen readers from working.

The key thing is providing options. A great example of that is Into the Dead, a 3D endless runner where you’re running through a field of zombies, ducking between them as they try to grab you. For most of development the controls were tilt-based, but not long before launch they added in a few other control options (buttons on either side of the screen, a virtual stick on the left, and a virtual stick on the right), specifically to open up access to players who were physically unable to hold the device up and tilt it.

They expected the vast majority of people to use the tilt controls, as they thought it was the most fun option. However the usage data they tracked actually showed 25% use across each of the four options. So through catering for what they percieved as a small minority, they had actually made the game a more enjoyable experience for the 75% of their players who preferred not to use tilt.

Q: Is it always going to come down to cost and the fact that a lot of games publishers and developers just don’t want to spend the money on research and finding solutions for gamers with disabilities?

Ian: Kind of. There’s a misconception that accessibility has to be difficult and expensive, but it’s not really the case, there are game jam games produced in less than two days that have huge swathes of accessibility considrations. It’s really just a case of where in development you think about it. Some features are always going to take extra time and money, but if you think about it early enough, there’s actually a great deal that can be done for very little effort, or even completely for free – just by making a simple design decision to do option A instead of option B.

It’s also not really much of a research issue, the knowledge is already out there, via resources such as gameaccessibilityguidelines.com. It’s just a case of raising awareness that accessibility is even a think, busting those myths about time and money, and actually just doing it.

James: Unfortunately yes – until an organisation actually invests in research of mobile gamers and the potential audience then it will boil down to plain economics ,especially for the small independent developers. Even if the research came out, it may be that the developers will pick and choose what kind of disability they want to support as some will have more of an impact on the experience than others.

Q: If there was one thing that you think the whole games industry could benefit from to improve accessibility for everyone, what would it be?

James: I think it is likely awareness for the game developers and someone to commission an actual study on disabled gamers. This way, the study could be PR’d and the whole community could gain a better understand as to their audience and what disability there are out there. It’s really only through awareness and education that anything will change and at present, there are few people talking about disabled games at conferences as it is not seen as as issue or not being sufficiently raised as such.

Ian: Inclusion of accessibility criteria in funding programmes. That’s something that has been done in Australia with astounding success – in the three years that the Film Victoria funding body has included accessibility in their application process, 100% of developers applying for the funding have considered some degree of accessibility. That’s just unheard of in the wider industry.

Note: The Film Victoria funding body state on their website that, “We encourage applicants to produce games that are accessible to people with a disability, including audiences.”

It’s a really simple approach, the funding application form just says if you’re thinking about accessibility, tell us how, and if not, tell us why not. No-one has yet chosen the second option. It gets developers thinking about accessibility at a point at which they’re receptive, they want to learn what will give them a good chance of being funded.

Q: Do you think disabled gamers feel ostracised from playing the games they want to play due to the lack of adaptability with games?

Ian: Absolutely. That’s one of the great benefits that access to gaming can bring – social inclusion, being able to do the same thing as everyone else. They also mean access to culture and recreation, between all of these things it’s pretty clear to see how important games can be to quality of life, and therefore how serious lack of access to them can be.

James: I agree with Ian on this one. If you cannot play a game you really like then you’re going to feel ostracised. It may not be a nice thing to say but ultimately it will boil down to a largely economic decision for many developers.

Q: In your opinion do you think that the games industry really cares about making their games accessible, or do you think they just feel the need to do tick box accessibility?

James: It’s hard for me to say as I’ve not spoken to enough people.  I think the first step is engaging with trade bodies like TIGA and UKIE to bring it more into the agenda and gain more visibility through seminars, research, media and other sources.

Note: I have contacted the trade body TIGA for comment and will update the blog when I hear back from them on their own comments.

Ian: Tick-box accessibility doesn’t really exist to any extent in gaming, as there isn’t really a box to tick, i.e. there aren’t really any requirements for developers to consider it. The exception is subtitling, which a number of publishers require, and that’s where you do it often just thrown in at the last minute without much consideration. Subtitles in games are generally terrible, both in structure and presentation, which is a shame considering there are set well researched easy to follow standards from other industries (I’ve written a blog post explaining this in more detail here: Subtitles Good Practice).

Compared to people in other industries, I’ve found people in game development to be far more likely to be in it for the right reasons, genuinely passionate about their vision and creation being as enjoyable as possible to as many people as possible. So once people actually know that accessibility is a thing, it’s a natural fit. It’s just a case of A. knowing that it is even a thing B. knowing how to fit it into your workflow in a way that makes it financially viable and C. (for large companies) not being blocked by misconceptions amongst management.

Q: With the advent of wearable technology, do you envisage the accessibility of games becoming even more problematic?

Ian: As with mobile, it’s a double edged sword. For some people it will be a boon, for others, exclusionary. As always the answer is in options, allowing people to choose the way to consume the content that best suits their individual preferences and needs.

James: Again I agree with Ian. It totally depends how you look at things. The introduction of wearable technology may be incredibly liberating for many disabled gamers – it completely depends on what the nature of the game is as well as their disability.  I think VR can be a huge plus if used in the right way.

So there we have it, some slight differences of opinion, but on the whole they both agree on the main salient points. In conclusion, it does appear that although there are some processes in place, until it actually becomes compulsory for games developers and the games industry as a whole to embrace inclusion, it will continue to be on the periphery of their focus. Which is ironic as I have no periphery vision either.

It seems there is no simple solution to accessibility in the gaming industry. There have been great strides since I was young, but I also think there is so much more that could still be done. I initially thought that it was a cost issue as to why the games industry don’t embrace accessibility and inclusion, but I think simply there needs to be an actual study or proper organised standard that the games industry must adhere to, before any great strides can be made. But it does appear that there could be some more straight forward processes that could be implemented that would make a whole range of games more accessible.

On a positive note, during my research I have discovered that there are more companies cropping up that are looking to make a difference and look to bring the subject of accessibility to the forefront. Includification is a great resource created by gamers and developers in partnership with The AbleGamers Charity, that look to encourage the games industry to improve accessibility. THere’s also a website which has produced accessibility guidelines for games publishers, but I wonder how much they are used.

But when a company like Activision Blizzard have made over $10 billion from the Call of Duty franchise alone; with the imminent release of the latest installment Black Ops 3 that is bound to rise significantly. You have to ask yourself – Is the games industry really doing enough to make their games accessible for all? And I think we all know the answer to that.

BBC See Hear

Systematic Sexual Abuse Against Deaf Children – The Importance of Appropriate SRE

By Business, Disability No Comments

BBC Newsnight and BBC SeeHear recently produced a piece about the shocking abuse in Woodford School for the Deaf in East London, which spanned over three decades, and was finally closed in 1991.

The school was run by husband and wife Beatrice and Eric Ingall. She taught the young children, while he was responsible for other general jobs such as driving the bus or ensuring the grounds were in order.

He was also accused of horrifically assaulting the children.

Former pupils heartbreakingly reveal in the film how the abuse “took place every day, at any time” and how Mrs. Ingall was aware and indifferent to the abuse. They also recount how he would enjoy seeing them suffering and even say “thank you” after his ghastly encounters.

The children were aged just 3-11 years of age so most would have been unable to recognise what was happening to them.

Ex-pupil David reveals how he “didn’t know anything. I thought [the abuse] was supposed to be fun and acceptable. I just went along with it, I didn’t realise.”

He says that it wasn’t until later in his life when he was training to become a social worker and was learning about sexual abuse, did he realise what it was that had happened to him.

While we are in no way insinuating that the onus is on the child to be educated about sexual abuse for it to not happen (of course the responsibility always lies with the adult), but David’s story is a reminder of why we desperately need safeguarding measures in place.

However, sadly, in these cases the ability to recognise the abuse would have not been enough for the children to seek help. At Woodford School they were unable to  use BSL and had limited written English vocabulary. This enabled this particular abuse to slip through the net for so long.

There was no true justice for the children at Woodford. Ingall was put on probation and fined £50 in the Seventies but the abuse continued. In 2004 the full case finally came to trial but fell through. The judge stated that too much time had passed and the fact that Ingall was now 80 and senile rendered him unfit to stand trial.

This unfair and disrespectful verdict did not take into account the years of confusion felt by the former pupils and the fact that they didn’t communicate to anyone what had happened to them until they were much older. This proves how dangerous it can be to deny a child the right to their Deaf identity and access to a proper inclusive education.

The NSPCC states that “with hearing children it takes them seven or eight years to disclose [abuse], so you can imagine with a Deaf child it’s much longer.” They also stated that Deaf children “are three times more vulnerable to being abused than hearing children” and that this abuse is still continuing despite many residential Deaf schools are closing down.

Abusers will always seek out the most vulnerable to inflict pain onto, thinking they can get away with it. If we equip Deaf, disabled and other sensory impaired young people with the tools they need to protect themselves we can stop future incidents like Woodward from ever happening.

Here at Enhance the UK we want to create our own online Sex and Relationships Education (SRE) resources which are fully accessible in BSL, highlighting the specific dangers and risks that are prevalent to Deaf and disabled young people and are dedicated to raising funds to do so.

Please sign our petition here and help us campaign for widespread inclusive Sex and Relationships Education (SRE) in schools across the country.

 

 Sources: BBC See Hear ‘Child Abuse, the BSL Bill and Doctor Who.’

 

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