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“What can I try to do to help my pain in the bedroom and make sure my partner stays happy?”

By Lifestyle, Mik Scarlet, The Love Lounge No Comments
“My chronic pain has never been properly diagnosed and i the last few years I have been unable to work because of it. My partner and I have been together for over ten years and had a really strong intimate relationship… until recently. I’ve been unable to enjoy any touch because of my pain recently and I find it hard to get in positions. My partner is understanding but I don’t want him to get frustrated as we are still young people in our early thirties. What can I try to do to help my pain in the bedroom and make sure my partner stays happy?” – Tina, Milton Keynes
Oh boy Tina, do I know how you feel. I also have had chronic pain for most of my adult life (I wrote about it on the Huffington Post recently) and also know how much it can prevent you from feeling sexy, or allow you to enjoy being touched. I can’t tell you any magic bullet, but I would advise you try Mindfulness. My GP sent me to a therapist who trained me in the Mindfulness technique specifically designed to help with chronic pain and it has changed my life. It gives you the ability to cope much better and puts you in charge of the pain.
Before I found the technique, I used to try to build up to sex slowly and this way I found I could get in the mood far easier. Another method might be role play. If you are really in the mood as you are living out a fantasy, pain is much easier to ignore. You might think that you have to do more to make it work, but I would advised you to ask your partner to take charge more, try stuff out and always keep checking that you are OK. That way as you get more intimate, he’s exploring you while you’re in control and both of you feel conformable. That in itself can be a bit of fantasy eh? Pain is a bugger to live with, but trust me you can find a way through and nothing gets rid of pain like a really nice orgasm. Sure not for long, but if you keep them coming then it’s the best pain medication ever. – Mik

“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.

 

“I’m worried I won’t look as smooth rolling around on the dancefloor!”

By Lifestyle, Mik Scarlet, The Love Lounge No Comments

“I was involved in an accident and after a long road of recovery I am now adjusting to life as a wheelchair user. So far, mostly, so good but I do have some worries about the practicalities of my new piece of kit​!

Before the accident I loved nothing more than hitting bars and meeting new people. I’m worried I won’t look as smooth rolling around on the dancefloor!” – Tim, Crawley

Hi Tim. To be honest I found myself looking far cooler once I started dancing in a wheelchair than I ever did on wheels. I have been known to take over a dance floor with my moves, and once even podium danced as a massive rave. I can see no reason why you couldn’t either. That’s not to say that getting back out once you start using a chairs is a bed of roses.
There are always the annoying issues of access, especially the thorny issue of accessible loos when you have had a few, but once you start hitting the nightlife you will find those local haunts that are OK and this becomes a regular. I found that going to a pub or club a lot gave you a chance to explain to the management how they could improve their access even more too.
If I’m honest, I had similar worries when I started my life on wheels, way back in the 1980s, but I soon found the call of a good time out weighed any fears I had. I also discovered that if you “accidentally” clip the foot of someone you fancy with your front caster you have a perfect in, and the offer of a drink to say sorry is rarely refused. Don’t crush their foot as this will never work, but a gentle nudge never failed me. Get out there and see what happens.
Download the Undressing Disability ebook

#UndressingDisabilityBook

By Disability, Lifestyle No Comments

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.’

 

Nathan sat on a wall

Crohn’s Disease: What you don’t see!

By Disability, Lifestyle, My story One Comment

Hi everyone. I have been having a long hard think about what my next blog should be about and today I would like to share with you my views about Crohn’s disease being a hidden disability. I’d also like to mention how grateful I am for the great support on my last blog, the comments I received were really heart warming and made me feel like I had achieved something.

Growing up with Crohn’s disease I always get the same comments from people (if ever I chose to tell them about my condition). The point is for people to know that I have a disability I have to tell them. I don’t always tell people and am sure there are lots of people I meet that don’t know I have it. Sometimes I have to point it out for people to understand why I can’t physically do something or why I have to be careful, for example I have to watch what I eat. I can’t just have a McDonalds or a curry without thinking about the consequences to my health. When I do explain my condition I get comments which include,’ Nathan you look like a normal healthy child’ or ‘Nathan you seem so active and willing’ and my personal favourite ‘Nathan you look so well.’

Many of these comments are made because my ‘physical’ image doesn’t reflect what is actually happening inside me and the symptoms I have. Although well-meaning, at times these comments make me feel belittled. This is because they can come across as disbelieving which shows their lack of understanding. What should a person with Crohn’s disease actually look like?

During my school life I constantly have to remind my teachers about my condition; because even I can agree that it can be easy to forget things you don’t see. I hate bringing it up but need to at times. I need to be allowed to leave the class to go to the toilet and this wasn’t always happening leaving me in severe discomfort. A few a weeks ago I managed to get my hands on a toilet pass (just to point out that I am now in my 4th year at the school). The problem is I get to the toilet, need to go…. can’t go and end up spending a long time in there. When I return to the class at times I encounter a disapproving look from the teacher which leaves me nervous and embarrassed. There are loads of other times that I have issues with awareness at school but I will come back to that another time.

The point is that if I had a disability that people could see I wouldn’t have to keep reminding people. I should say that I don’t always tell people about Crohn’s disease. I only share it with people who I think are kind and considerate for obvious reasons – no one wants their condition used against them and obviously I only share personal information with people that I trust – well I guess I can trust you guys! I also don‘t want to be defined by my disability rather than who I am.

My advice to those people who have been told by someone they are talking to that they have Crohn’s disease from personal experience is to be empathetic and not sympathetic. Put yourself in that person’s shoes and respond how you would like to be treated.

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“At 28 I started partially losing my sight last year and have increasingly been losing faith that I will find a boyfriend…”

By Disability, Lifestyle, Mik Scarlet, My story, The Love Lounge No Comments
At 28 I started partially losing my sight last year and have increasingly been losing faith that I will find a boyfriend – it was hard enough before! Would you recommend trying to date other people with impairments such as myself? Will able bodied men see me for me? (Pardon the pun..)
Jasmine
Hmm. I really think that it’s what works for you Jasmine. If you might feel safer and at ease with some who also has a visual impairment that why not try it? But not if you feel that’s all you can get, or you are having to choose that route because you are disabled. No one should make do, especially people as amazing as us! I think that the right person will not only not care that you have a disability, they will see how that has made you the perfect person for them. I found that with my wife, and I feel like that about her. She has a big burn scar all down her right side of her body, and when I met her I knew she was perfect for me as she had it on show. So while she doesn’t call herself disabled, I say she is. We have a shared experience of doctors, and of people being real tossers. Trust me, I was shocked to experience how people react to someone with a visible scar. Shocking. But I digress. I really feel that we, as disabled people, can internalise our fears and allow them to get in the way of us finding love. In a way, disability can act a filter stopping the really awful possible relationships getting in the way of the possible good ones. If some one is put off by a disability then they really aren’t right for us, and so hooray. Make way for those who don’t care.
I know this isn’t really much help, but if I was you I’d just get out there, enjoy life and see what life brings. We spend too much time worrying about relationships and dating and what we should be doing is living life. Along the way it’s much more likely to meet people, and those people tend to be the ones who we want to be with, rather than those we feel we might have to stay with. If they are are visually impaired of not won’t really matter, if they are right… they are right! – Mik

“Should I feel guilty since my accident has changed my partners lifestyle…”

By Disability, Lifestyle, Mik Scarlet, The Love Lounge No Comments
My fiancee and I are getting married next summer and since my accident last year, and the fact that I have to use a wheelchair, we haven’t been the most active couple we once were. We were always trekking or mountain biking and I feel this was a big part of her attraction to me. I feel like I am making her live a life she didn’t choose. Should I feel guilty? Tom

 

Hi Tom. It’s one of the elements of becoming disabled that is rarely talked about, the guilt felt for those who are in our lives. Whether it’s wider family or our partners, it’s tough to cope with that feeling that we are now a burden, or that we have made their lives change too. I’ve talked to my wife about this, and although we met after my first spinal injury (yes I’ve had two, so greedy or what) she had to care for me while I was being treated for my second and the surgery that I required. She had to quit her £500/week job and go onto £50/week carer’s allowance, and both of our lives fell apart. But she insisted she had no worries about this at all. SHE LOVED ME! And I expect you are in the same boat. That love doesn’t care about you using a wheelchair, or legs or flying. Your partner loves you, and it’s vital that you remember that. If you let your guilt and worry colour how you treat her, you may create a self fulfilling prophesy.
However, just because you are now one of us wheelie types doesn’t mean the end of your active lifestyle. In fact it might open up a whole new world of outdoor fun to you. There are many wheelchairs on the market that allow you to venture into the outside world, I’ve tried two – the Boma – https://www.youtube.com/watch?v=ayeUCvj4D5Q and the Trekinetic – https://www.youtube.com/watch?v=t0VCTpguiLo and I can promise they are loads of fun. My local sports centre has a climbing wall and does mountain climbing for us wheelchair users, and there are loads of other such sports open to you. The stereotype of a wheelchair user is no longer true mate, we are eating up dangerous and outdoor sports and creating new ones too. Look online and get out there.
But most important, you are no different to the person you were before the accident. You just use a different mechanism for getting around. Sure other bits of your body might work differently too, but you are still you. And your partner loves you. Take that love at face value. Don’t over think it, or let the way society paints disability make you doubt it. Us wheelies are very loveable types and we make great partners. If for no other reason than it’s easy to keep us in bed… just take our chair away!
I wish you loads of luck and happiness. I hope the big day goes well. Now stop worrying and kiss your partner, get on online, get a great all terrain wheelchair and get out there. Hopefully I’ll see you scooting up a mountain somewhere? I’m easy to spot, I’ve got stupid red hair… and my wife hair is bright blue!

 

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