Disability

The countdown to the Under the Covers exhibition has begun and I can’t contain my excitement. Enhance the UK have teamed up with Scope to present an evening at The Gherkin, London, on Thursday 22nd October 2015 to celebrate ETUK’s Undressing Disability exhibition and Scope’s End the Awkward campaign.

You can read more about the event here.

During our fancy night at The Gherkin, (yes, The Gherkin) ETUK will showcase the amazing photographs of disabled people in their underwear, screen the film made for the campaign and launch the book that has been produced, Undressing Disability, which I will be featured in. Have I mentioned that I’m spending an evening in The Gherkin?

There are no words to describe how incredibly proud I am to be part of such an awesome campaign, and as much as I’d have loved to strip off and join in with the photoshoots and film, my lack of confidence prevented me. I have a gigantic soft spot in my heart for the ladies and gents that bore all for ETUK because they’re bloody fearless. From what I’ve read and seen of the work everybody has put it, it’s definitely going to make an impact and you should totally check it out.

Make sure you look out for my story in the book. Disclaimer: there are quite a few sweary bits. However, I’m hoping it will make you laugh out loud but maybe bring a tear to your eye. All the chapters in the book are real-life accounts of dates, relationships, sexual encounters that disabled people have had. I got involved with Undressing Disability after I spied them on Twitter. As I’ve mentioned before raising awareness is close to my swinging brick – I mean, heart, and I like the idea of talking about sex, especially in the disabled community. I sometimes get the impression that people think we don’t do it/can’t do it/don’t like it/mustn’t like it – I mean, why should it be taboo? We’re still people too, guys. And shock horror I have sex and I’m in a wheelchair. I must point out that I get out of my wheelchair before the sex takes place, but you get my point. Anyway, I figured that sharing my story alongside other disabled peoples would highlight how important a healthy sex life is and that no matter your disability; you have the right to feel loved, sexy and confident.

In my late teens, I’d have welcomed a book like Undressing Disability into my life, just to know that I wasn’t the only person dealing with a condition and trying to talk to boys – never mind have a physical relationship with them. I think it’s really important that the stigma surrounding sex within society is reduced, not only within the disabled community, but everyone. I talk about it openly and easily, I’ve always been that way, but so many people shy away or are disgraced by the mere mention of the ‘S’ word.

To put it briefly, I hope the campaign opens people’s eyes regarding disability and sex – we do it, we like it and although there might be some barriers, we aren’t going to stop.

Keep checking Enhance the UK’s Twitter and Facebook for more info and behind the scenes photos.

Hi. My name is Nathan, I am 14 years old and I have Crohn’s disease. I was diagnosed with this when I was 9 years old. I have decided that I would like to try and write some blogs about my experiences because I think having Crohn’s can be lonely and I want to spread awareness.

I first knew something wasn’t right on the evening of my 9th birthday… I was sat watching TV (football as always) and all of a sudden I felt this sharp intense pain along the right side of my stomach. I was virtually in tears and shouting to my mum for help. She gave me some painkillers and hugged me on and off throughout the night when I kept waking up in pain. I started going to the toilet for a poo (or a number 2 or whatever you want to call it) way too often, sometimes over 20 times a day. There was blood in my poo and trust me when you are going that often it’s really uncomfortable! The toilet became my new home; I spent most of my time there. Mum stacked a pile of books in the corner for me and put a little radio in there – it’s the little things that make the difference! One day I was at a friend’s house (I had grown up with him and his little sister, as my mum is close to his mum) when I needed to GO. I was in there for hours and cried a little as it was so painful when Robyn who was about 3 at the time decided to drag her little stool into the bathroom, bring her packet of cookies and sit and keep me company! We laugh about that a lot now. It wasn’t long after this that a row of air fresheners mysteriously appeared in the toilet … to be fair, when I am in full flare up, even I can’t cope with the smell!

Mum had taken me to the doctors but the wait for a hospital appointment would take months. I very quickly deteriorated health wise. I lost a couple of stone in weight and was skin and bones. I had no energy so I couldn’t walk more than about 5 minutes at a time and this left me in a lot of pain. I wasn’t sleeping as I kept waking up all night with severe cramping. It got to the point that I was only able to go to school part time and wasn’t able to move far from the sofa at other times. I went from being fit and active, a normal young boy to almost like an old man. This was the hardest part for me. Mum did keep taking me to the hospital saying there was something not right with me but I felt like the doctors weren’t listening or appreciating what we were saying to them.

I was diagnosed in July 2010, only about 4 months after I became ill, but over 16 weeks deteriorating how quickly I was meant I was in a real state. Being given a diagnosis left me with mixed emotions. I was relieved in some ways because I thought that now they know what my condition is the doctors could treat me. It might sound silly but I also believe that some people didn’t believe or understand how ill I was. I hoped that having a name for it, people would be more understanding. On the other hand knowing that I would have this illness for the rest of my life made me feel depressed and worried about my future and if I would succeed in life. I didn’t really talk to anyone about my fears or concerns and bottled it all up. I felt that other people couldn’t understand how I felt and I thought that people wouldn’t accept me or see me the same way as they did before.

Not talking about my feelings was one of the worst decisions I made. I sunk even further into depression and even considered suicide as an easy way out from everything that was happening. I know it’s shocking that I felt that way when I was so young. I became an arse towards everyone – I was so angry about everything. I lost my temper all the time, breaking things and shouting horrible things and abuse at my mum. I know mum was really worried about me and in the end she went to the doctors and got me referred to see a psychologist. I was furious and didn’t want to go. The IBD nurse at my local hospital was great and really supported me, encouraging me to go to see the psychologist. I hated it there … the less said about that the better. I did start to feel better again afterwards but I don’t think it had anything to do with her. I think it was more about the fact that I started to feel a little healthier and this give me hope for the future.

Anyway that’s enough for one day. I have so much more to say so keep your eye out for another blog.

Nathan

I have previously written a blog about a culture of low expectation and my experiences as a parent with my son Terry (names have been changed) who is profoundly deaf. Within the blog I mentioned that I was fighting for my son to go to a specialist school. Well, the tribunal date has been and gone so I wanted let you know what happened.

Firstly the process took a long time. In our case it took 15 long stressed filled months. Our journey started at Terry’s annual review when we expressed our desire for him to attend a residential school with an oral approach. We were asked if we wanted it to be taken to panel (a group of people from the local authority who make decisions) who would decide if the LA would pay to send him there. When we stated that we did we had to wait until August when we received a letter to state that the LA had decided that it was an unsatisfactory use of public funds and that they had reservations about sending an eight year old to a residential school. Our appeal process formally started in December and it took a few months before we were given the date for the tribunal in June. In the meantime we were not simply waiting for the date but with support from the National Deaf Children’s Society gathering evidence to support our case.

To say I was anxious on the day of the tribunal was an understatement. Myself and my husband as well as representatives from the school I wished my son to attend were present, as were the Special Educational Needs officer, the manager for the Hearing Impairment outreach provision and the local Speech and Language Therapist who represented the Local Authority. The panel was made up of three people who had to decide the fate of my son. I made sure that I put a photograph of Terry on the desk in front of us as I didn’t want him to be a faceless name. The day was incredibly stressful. It required a lot of biting my tongue as I was made to feel that the needs of my son were not central to the case the Local Authority was making. My opinion is that they were more focused on their budget. This is an opinion shared by many other parents. In the end the Local Authority had to concede the case as they were unable to state exactly when they were able to provide Terry with a qualified Teacher of the Deaf. To say we were ecstatic was an understatement.

My husband and I hugged and kissed there and then, it was just an overwhelming sense of relief. Now reflecting upon the tribunal process I am angry. The impact that it had on us as a family was huge. I was so stressed and therefore at times snappy, of course this affected us all. I was not surprised to discover that during a Special Education Needs and Tribunal Survey conducted in 2013 by the forum Kids First that some parents give up because they cannot cope with the stress. I feel that the process actually encourages the school and the local authority to be dishonest.

There are numerous examples I can give where this has happened. One example is the week of the tribunal when producing a timetable the school changed Terry’s and inserted lots of 1:1 support sessions. This has never happened before.

I would like to say to other parents who are going to tribunal to make sure that they seek independent assessments as these are invaluable. Also go and seek advice from charities, there are lots out there who will support you and put you on the right path. Finally if you are able to accept that the process is not about your child as an individual but about costs then this would make it easier for you. This was something that I wasn’t able to do as the impact that this decision would have on my son is literally life changing for him.

I can’t even begin to tell you how many people have asked me whether I’m going on holiday this year. ‘Going anywhere nice?’ ‘Where you off this year?’ ‘You deserve a holiday.’

I KNOW I DO!

But I’m not going anywhere, I’m staying put. I will however be having a lovely three week stay in hospital in August, does that count as ‘somewhere nice?’ I think not.

I find booking a holiday exhausting; as a disabled person there are so many things to contemplate before even picking a destination.

1. ACCESSIBLILTY.
2. Trains – Each railway company has their own way of assisting disabled passengers so it is important to contact them as early as possible to arrange any help you may need. It may also be beneficial to look at a Disabled Person’s Railcard; for £20 a year, the holder and an adult companion are entitled to a third off any fare in the UK.
3. Flying – Again, plan ahead! Your needs should be met if you contact the airline in advance. Unlimited baggage is usually available for mobility aids.
4. Did you know you can book accessible cottages and holiday homes? There are plenty of holiday homes that cater specifically for disabled travellers. Google it.
5. Accessible hotel rooms – Before booking make sure the hotel is kitted out for your needs. There’s no point booking a beautiful hotel if you can’t get your wheelchair into the room; or the shower is over the bath. Ask for a ground floor room if you prefer.
6. Distance travelling – Will you be able to cope with a long-haul flight? Take this into consideration.
7. Travel insurance – You’ll need this. You might take ill before your holiday (I hope you don’t) or during it (again, I hope not), but if you do there’s some great companies that are designed to insure disabled people.
8. Camping – That’s a whole new set of rules. I don’t do it because my high-maintenance bones require a memory-foam mattress and the diva in me likes plug sockets and a private shower.
9. Is the destination easy to get around? Do your homework; you don’t want to arrive at your destination only to find out that all the places you want to visit are inaccessible, require a lot of walking or something else you simply can’t do.
10. Are there ramps/lifts?
11. Is there disabled parking?
12. Mobility equipment hire – Find out if there is anywhere you could hire equipment if you needed it.
13. Make sure you have enough medication. There’s nothing worse than being away from home and running out of meds.

If you are going on holiday, take lots of pics, make lovely memories and have fun!

Sarah x

Where should I start? I’m Sarah, I’m a Scouser living in Northamptonshire with my boyfriend and a broken body.

I have Ehlers-Danlos Syndrome (EDS), Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (PoTS) – basically, I’m in a lot of pain. I dislocate, I’m knackered all the time and my heart races causing blackouts and dizzy/shaky spells – sounds marvellous doesn’t it?

There’s a lot more to it but I’m sure we can discuss that another time.

I heard about Enhance the UK on Twitter, they wanted stories from disabled people about their sex lives and relationships; I was totally up for that. I had a few men from hell that I could write about. I emailed Jenny as soon as I scoped out their website and had a look what they were all about.

I’m all about raising awareness; I work for the HMSA on the social media team and also run local group meetings for people with a hypermobility syndrome in the Northants area. I write fiction and a blog – I’m all about the words.

I’ll be appearing on Enhance’s blog every month so thought I’d share some random facts about me:

 I can’t usually do that serious thing. You know the deep and meaningful conversation? Yep, that and I don’t work well together; I end up making a really bad joke or staring at my phone.

 I have a Masters in English, *bows* thank you, thank you. My dissertation was on the commodification of the disabled body in the Victorian freak show. I was and still am very interested in that topic.

 As from my previous point – I like weird stuff.

 Crime fiction rocks my wheelchair. Crime novels, detective shows, crime thrillers, Criminal Minds, serial killer type things. I guess this leads back to my last two points.

I should probably branch out more.

 I have an unhealthy amount of makeup. I’ll say no more on this.

 Pyjamas are the way forward in life.

 Lists are good.

I’ll end it there, see you next time,

Sarah x

One of my favourite ways to chill out and relax in the evenings is to head online and listen to one of the many podcasts that pepper the internet. Fairly near the top of my list of ‘must catch’ shows is the one produced by the comedy website Cracked. They specialise in picking apart pop culture to find out why films, TV and music are a certain way and how that affects us as the audience. One of their latest episodes involved them turning their critical eye on the way Hollywood portrays certain groups, including the blind and physically disabled. Of course, we all know that characters with impairments are few and far between in the mass media and that there should be a lot more out there but it is quite interesting and enlightening to take a critical look at the characters that are out there.

Back when I was at college, I took A Level Media Studies, a large portion of which was learning about film making and the shorthand that directors use to tell an enjoyable story in a relatively short amount of time. Audiences need to be able to know who and what a character is, almost immediately, just by looking at them. So in the relatively rare cases of a film or series showing someone with, lets say, a visual impairment they are given recognisable indications to make this apparent – a white cane, a guide dog, dark glasses. But the fact is many blind people do not use these. This has lead, according to Cracked, to the bizarre phenomena of people meeting ‘real life’ blind people and thinking they’re ‘faking’ because they don’t ‘look’ blind.

It is a very strange situation to be in when people are questioning the authenticity of someone’s impairment, based on what they know about it from, not the actual person or even a medical expert but from what is shown to us in fiction. And yet it is something we all do, no matter how bright and accepting we are. We are bombarded by orchestrated images every day from the moment we enter the world, it’s impossible to ignore them. I’ve never met someone from Australia but if you ask me to describe a typical Aussie I might say no ­nonsense, friendly, out ­going surfer ­type who likes a beer. The weird thing is I know, as an intelligent person, that the description I gave is a stereotype; an unreal image I’ve built up because of what I’ve seen in the media but I can’t stop it colouring my expectations.

But where it gets really scary is when you start taking a look at the sort of plots and story­lines disabled characters feature in. Broadly, I think you can categorise these into two piles. Firstly, you get the ‘issue’ based programmes, where the disabled character is featured so that the able­ bodied protagonist can learn something about being a better person. A lot of such stories are really well-meaning, setting out to show that just because someone is disabled it doesn’t mean that they’re not a normal person, but a lot of the time because the programme is focused on the issue of ‘disability’ the whole exercise under­mines itself. The able­ bodied protagonist’s prejudices are just a challenge that they have to overcome. Once they’ve done that, grown and become a ‘better person,’ what further purpose does the disabled character serve? They are just an avatar for a challenge in the main story.

Speaking of avatars moves me on to the second problem writers and directors seem to have with disabled characters. The disturbing assumption that if you are disabled (particularly if you acquire your disability) your life is not worth living in that body. Films like Avatar, Million Dollar Baby, Inside I’m Dancing and Simon Birch all seem to believe that disabled people find life so unbearably hard that they would be better off dead (or, in the case of Avatar, an 8 foot tall blue cat/alien). Look, I’m the first to admit living with a physical impairment is an emotional struggle and bloody hard at times but should we really be showing death, and in a lot of cases suicide, as a viable, even noble option. The fact is the majority of disabled people live fulfilling, enjoyable lives.

A survey of people with acquired disabilities showed that after the initial stages of shock and grief their overall level of happiness returns to the same level it was before. So why does Hollywood love showing disability as a problem only answerable by death? Is it because movies and movie stars worship the cult of outward physical perfection? Maybe, but I have another theory. Movies, the best movies, are successful because they tap into our basest feelings and emotions; joy, fear, sadness. Most people have an unconscious fear of their own mortality; the fragility of this bag of flesh, bones and nerves that carries us around every day. Seeing disabled people is a reminder that the human body can stop working properly in a million ways. It makes us ask ‘how would I cope if I lose my sight/speech/use of my legs?’ Most people don’t know the answer to that question. Better to portray disabled people as a removed subsection of society, safe behind a barrier of wheelchairs, white sticks and social oddities than show them as ‘normal’ people. Or better yet, let their story­lines end in an honourable demise that solves all their problems.

But it isn’t all doom and gloom. Now and again, you turn on TV and see something that gives you hope. Case and point, the recent police drama Vera on ITV which featured a physically disabled actress as one of the officers assisting with the murder investigations. The character was shown as a competent member of the team, capable at her job but regularly badgered by the world ­weary detective, just like the rest of the team. Nothing about the role said ‘disability’ apart from the fact the actress in it just happened to have an impairment, showing that disabled characters can be included in a way that is neither patronising, tokenistic or pitying.

My son Terry (names have been changed) is 8 years old. He is profoundly deaf and wears a cochlear implant. He attends a mainstream school with a Hearing Impaired Unit. He is educated for core subjects including English and Maths in his mainstream class with the support of an Educational Communicator.

I have had concerns about my son’s progress for quite some time now. When speaking to his class teacher I was reassured that he was doing well academically and progressing well. This has been a pattern that has been repeated at every parents’ evening since he started school with various teachers. At no point has a teacher looked me in the face and been upfront and transparent with me. Looking back through his school reports I am aware that this is not the case.

He has not progressed academically as would be expected and his attainment is quite a way below the national average. I think that it is disgusting that I can be mislead in this way. My son is not doing well in school and their expectations of him are low. Had I not known a little about this from experience of previously working in a school, I would have taken them on face value. This suggests to me that there are other parents out there who believe their child is doing well when this isn’t true.

It was only when I had an independent assessment done that I realised how far behind Terry actually is. He is approximately three years behind his peers. The attitude that I have had from the school including the Special Educational Needs Co-ordinator and the Teacher of the Deaf is that this is perfectly normal for a deaf child and not to worry. I find this astonishing. Deafness is not a learning difficulty. There is no reason, with the right support and attitude, that my son should not achieve academically. The support from the school has been inconsistent at best. Input from a speech and language therapist and a qualified Teacher of the Deaf has been patchy.

I am now in the process of fighting the Local Authority so that my son can go to a specialist school. It’s a very stressful time and really emotional. All I want for my child is what every parent wants – the right for their child to have a good education and to be supported in an appropriate way so that they can achieve their full potential. Trying to remove my son from mainstream teaching is not something that I ever thought I would do, however whilst this culture of low expectation remains in mainstream provision, I feel that I have no choice. I wholeheartedly support the Close the Gap campaign that has been lead by the National Deaf Children’s Society and urge other parents not to take reports of good progress at face value.