Monthly Archives

February 2016

Everyone Deserves Good Service by Holly Williams

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As anyone who has been reading this blog regularly will realise, my main focus is, on the whole, stories and matters that mainly concern people with a disability. Partly I hope that by giving my opinion in an entertaining way, I will be able to help shed some light on what it’s like to be a disabled person living in Britain today. The problem with most of these stores, if you could call it a problem, is that the issues they raise usually are only relevant to people with impairments. However, there was a story this week about a disabled person that totally overlooked the fact that the issue it raised could have happened to anyone and it only became newsworthy because it was a disabled person who was unfortunately the victim.

It involved mum-of-three Beth Lloyd from Ashington West Sussex who has Crohn’s disease and arthritis. Like many busy modern mums, Beth does her weekly shop online, via Tesco’s website. Recently, she made the mistake of booking the wrong time slot for her delivery, meaning that her groceries arrived an hour earlier that she was expecting and therefore she was not able to get to the door in time to answer it. Her husband got there just in time to see the driver depart and found that he had left a card addressed to ‘Mr & Mrs I Can’t Be A***d To Go To The Shops.’ While it’s understandable that for someone with Mrs Lloyd’s limited mobility such a crass remark is deeply upsetting and offensive, the reporting of this incident glosses over one vital factor. It is a news story solely because Mrs Lloyd was physically unable to get to answer the door. But even if she had been, even if she was a perfectly physically fit individual who had just popped out to her back garden when the delivery man just happened to arrive, it doesn’t give him the right to insult her. By making the story about Mrs Lloyd’s disability, the media seems to be saying that had she been able-bodied the rude note would have been less insulting. Okay, the sentiment might not have hit such a raw nerve but surely no-one deserves to be called lazy just because they made a mistake on an online form.

Tesco offers this service because they are able to and it makes them money so the people paying for it should expect to receive their goods in a courteous and professional manner. Yes it might be annoying for the driver to turn up to a house where it appears no-one is home and I wouldn’t blame him for having a moan to his colleagues about it. Everyone who works in retail has had to deal with a difficult customer.  But that doesn’t give you the right to make snide comments to their face (or in this case push them through the letter box). You receive a wage to do a job and in all cases there are going to be aspects of that job that bug you but you have just got to deal with them like an adult and vent at an appropriate time. Whoever pays the piper calls the tune and in another situation, when you have the money in your hand you’ll expect to be treated with a bit of respect. That’s how it works. If the driver bought a shirt from M&S and had to return it, he wouldn’t be happy if the person on the counter called him a ‘stupid, fat git’. Having a disability doesn’t give you extra rights not to be insulted by the people you receive services from, that should be something we should all expect and give. I’m just baffled that the driver would think it was appropriate to leave such a note and not have it come back on him in some way.

Perhaps big business is to blame, (it usually is). Perhaps it’s a trickle down effect, companies don’t respect their staff so staff don’t feel they should bother so much. Maybe. But then again, I was brought up with a different work ethic. For me, if you do a job you should do it well not for any financial or exterior reward but for your own self esteem. Yes, the people you are working for might not appreciate it but at least at the end of the day you can say ‘I’ve done my best. If people are unhappy, it isn’t because of something I’ve failed in. I’ve given my all as a designer/carer/Tesco driver/poodle juggler and no-one can take that away from me.’ There is a reward in that feeling like no other, because it’s a satisfaction that’s earned and given by yourself to yourself. And if we all did that, not only would our self esteem swell but we would all receive a better quality of service. Or at least not get the sack!

Doggy Diary – Tails from Ivy the Hearing Dog

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I have decided to keep a diary about all the exciting things that I get up to with my recipient, Claire. Recipient is just a posh word for the person who is lucky to have me as their hearing dog. She isn’t my owner as the charity Hearing Dogs for Deaf people still own me so I don’t call her that. I like to think of her as my partner – like a partner in crime, as we get up to all kinds of things together. I work hard for Claire, because she is deaf. It’s my job to alert her when there are different sounds. I really do enjoy every minute. There is nothing I like more than putting on my coat and going out to work. You see, I am a working dog and not just a pet. If you keep reading my diary posts I will show you how I work and the things that I do for Claire.

Monday 25th January

Wow, what a day! I was not happy this morning as Claire had me leaving the house really early in the morning out into the freezing cold. Claire is a trainer for Enhance the UK and was training at Gatwick airport so onto the train we jumped. Luckily she remembered to bring a bed for me as I really don’t like lying on the dirty floor of the train. It wasn’t a bad journey although Claire got cross as a lady asked her to move as she didn’t like dogs. Claire refused so eventually the lady moved. This was good as it gave me more space to relax in. I slept the whole way to Gatwick. This isn’t my first time at an airport; I have even been on an airplane before! The training was good as I got to meet Gibson the Guide dog. He was huge! Sometimes being small can be difficult for me as people cannot read my coat properly and do not realise that I am a hearing dog! They try and tell Claire that I am not allowed in places and then she has to stop and explain that I am an assistance dog. Assistance dogs are dogs which are trained by charities to help people with disabilities. I have a special logo on my coat to show that I am an assistance dog.

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Monday 31st January

Claire is working from home today which is great, as I get to spend the day lying in my bed beside her. I tell her when the telephone rings by gently scratching her legs and taking her to the sound. She took me for a lovely walk at lunch time with my new ball which was great as I love playing fetch.

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I scratch Claire’s legs to let her know when the telephone is ringing and then take her to the telephone.

 

 

 

 

Saturday 6th February

I went to Birmingham today to do a photoshoot. Claire’s going to be writing for a new magazine Liability and wanted me to be in the photos with her. She hates her photo taken and was happier because we had our photo taken together. There was lots of waiting around in the studio in the cold so Zoe (another writer) wrapped me up in a blanket to keep me warm and gave me cuddles! I will share the proper photos of me with you when I get them but here’s a picture of me posing for the camera.

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That’s all for now but I will tell you some more tails soon!

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(Sometimes) Parents Should Be Seen and Not Heard! by Holly Williams

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A while ago, I got wind of a very interesting debate that sprung up on The Mighty, a website that deals with various disabilities issues and features content written both by disabled people and carers. The controversy centres mainly around two articles the site published by parents, one that featured photos of a couple’s severely disabled 16-year-old son  in nothing but a nappy and the other by a mother of a autistic child who made a ‘light-hearted’ bingo card featuring possible scenarios of their child’s regular temper tantrums. Many of the disabled visitors to the site were outraged by such content, finding it highly disrespectful and demanded it be taken down while parents felt that their voices and opinions were being unfairly silenced from this outlet when all they were attempting to do was educate the wider audience about the difficulties faced by disabled people and their families.

Before I start, I just want to state that I do understand that having a disabled child is an extremely challenging and stressful experience at times. I also am convinced that the parents who wrote these articles love their children a great deal and meant no harm by sharing what life is really like for them day-to-day. But I do question whether in their eagerness to explain to people the perhaps-overlooked problems they face, these parents are exposing private details about their child in a public arena when they don’t necessarily have the right to do so and it isn’t in their child’s best interests. Moreover, by talking so openly about their child’s needs and impairments are they in fact portraying their offspring as only these facets and not as complete and whole people who they love and cherish. No doubt, the intent is to alter the world to be better equipped to deal with and accept their sons and daughters as they grow, but in doing so are they sometimes choosing methods that expose too much about these young people, whose disabilities are so severe that they are unable to give their consent for such exposure. Surely, when this is the situation, it is a parent’s responsibility to act as a gatekeeper to their children’s privacy.

I can see how being the parent of a disabled child can be an isolating experience and I can understand how the vital support given and received by a extensive wider network of family, friends and others can be a much need resource to parents for sharing their worries and emotions. But when that network extends into the virtual world it allows anyone access to information that once perhaps was only accessible to professionals and those closest to the family. We now live in a digital world, where people seem more and more comfortable with sharing a greater amount of information about their life via the net. It is no coincidence that this has happened along side more and more disabled people speaking out about their experiences in life. What was once hidden away in private can and now is discussed. But for people like me, and my parents, who put great value on privacy and still feel like personal care is a matter that is best shared with the fewest people possible, it can be a very uncomfortable world. Many disabled people feel totally comfortable sharing intimate aspects of their needs to enlighten others about the challenges they face, I don’t. But to do so is their choice. The individuals written about in these articles have had that choice made for them by their parents and I don’t feel that’s right.

Like I say, being a parent of a disabled child is a challenging, tiring experience and people will get worn out, stressed and complain about it. My mum’s no different, she’s always saying to me how exhausted she is and how much she has to do. But that’s the difference. She says it to me, she says it to my dad and her siblings. She does not soapbox my problems and her concerns to every Tom, Dick and Harry she meets or uploads them to the internet (mainly because she’s not computer literate but if she did know how I doubt she would). This is because, in her words, ‘it’s none of their business’. My mum wants people to know about the daughter she’s proud of as a person, not allow them to view me through a prism of my impairments and what she has to do for me. Caring for a disabled child of any age is a 24/7 job and it’s very easy to get bogged down by the endless cycle of worry and care and forget what we take for granted. Maybe more parents should take a page out ofMaria Colon’s book and remember your child is a person too, no matter how much they rely on you.

The good, the bad and the ugly… by Simone Mazin

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During the past few weeks, a lot has been said (and written) about my husband’s distressing experience at a bar in Waterloo. Without wishing to go over old ground, he was initially refused entry into the bar as he had his guide dog Gibson with him. When he tried to argue his case, he was forcibly pushed backwards by security staff.

The fact this happened in London in 2016 has highlighted there is a clear need for more disability awareness training. Particularly for ‘front of house’ staff. However, rather than focus on the bad, I would like to talk about the difference it makes when staff have obviously had appropriate training – especially from a carer’s point of view.

I recently had a great night out. Actually, it was better than great. In fact, I would almost go as far as saying it was the best night I’ve had for a long time. It wasn’t a particularly extravagant night out. Dinner and tickets for the theatre on a rare date night with my husband.

Like most married couples of our age, after nearly 15 years of marriage and two children, everyday life sometimes gets in the way and spending quality time together regrettably doesn’t happen very often.

But here we were. Boxing Night 2015 and after the kind of meticulous planning someone from MI5 would be proud of, we were happily sat enjoying our food at a restaurant. Just the two of us. And Gibson. Noisily slurping from his bowl of water and if I’m honest, making a god awful mess.

As fabulous as Gibson is (and as much as I genuinely love him), three can sometimes be a crowd. The simplest of things that other people take for granted causes us a major headache. Walking in public places with a dog shouldn’t cause that much hysteria but it really does. Reactions tend to vary from strangers openly staring and pointing, overly petting and stroking Gibson while he is trying to work to the more extreme reaction of literally screaming and running away.

We all know Joe Public can be an ignorant bunch and this kind of extreme reaction can’t be prevented. However, I believe it’s a different story for the service industry. I have lost count of the number of times we have been turned away from shops, supermarkets and other various public places because of their ‘no dogs allowed’ policy. It’s particularly bad in restaurants and bars. It is fair to say that not all, but most allow us in once we’ve explained Gibson is a guide dog and legally is allowed anywhere. But why should we have to explain? Is there such a lack of disability awareness training in this country that restaurant staff don’t know what a guide dog’s harness looks like? Do they really think it’s some kind of trendy fashion accessory? ‘Oh look, our dog’s rocking the hi-vis jacket look’.

I’m usually on edge before we’ve even entered a restaurant because I know 9 times out of 10 we will be challenged. It kind of kills a romantic night out when we have to request to see the manager before we’ve even glanced at a menu.

Sometimes my husband decides not to take Gibson with us and this is usually fine. Over the years, I have perfected my role as his human guide dog. We hold hands. Not because we are desperately in love and can’t bear to be parted but so I can guide him. Sorry if this bombshell disappoints anyone. I gently steer him right and left and squeeze gently to make him slow down. Occasionally the gentle squeeze turns into a knuckle breaking clench when an unsuspecting pensioner or small child walks across his path. It may be unconventional to some but hey, it works for us!

This is all very well and good when we are walking around. But when we go to a restaurant, I have a different issue altogether. Firstly, a lot of restaurants are not suitable for us because of atmospheric lighting (candles or dim lighting would be perfect for my husband if he had no interest in seeing what he was actually eating). Then there are other questions that need to be answered: Is there an accessible toilet or will my husband need to walk down hundreds of steps in the pitch darkness and then navigate through a badly lit corridor just to do a wee. And how about the general layout of the restaurant? Are the tables so close together that he will knock over numerous plates and glasses of wine before he’s even reached the deadly stairs. I dread him saying on nights out that he needs the toilet. I am embarrassed to say I once asked him if he could not just ‘hold it in until he got home’.

Back to our date night. My husband had booked tickets to see the Illusionists at the Shaftsbury Theatre. We wouldn’t normally take Gibson on this kind of night out and in the past, have asked a family member or friend to look after him for the evening. However, being Boxing Night, most people we would normally ask already had plans. My husband decided the best option would be to take Gibson with us. I have to be honest, my heart sank a little when he said this. The feasibility of finding a suitable, well lit restaurant with lots of space, accessible toilets, with staff who would understand we needed a table with a little extra space (and not just shove us in the corner so we are out of the way) in Covent Garden on a Saturday night seemed slim to say the least. And what the hell would we do with the dog during the show?

According to my husband, the theatre had been completely ‘on the ball’ when he booked the tickets and offered a service whereby they would look after Gibson during the performance. The sceptic in me imagined this to be utter bullshit and I had visions of us not being allowed into the theatre and me ‘dog-sitting’ Gibson while my husband relaxed and enjoyed the show.

The reality couldn’t be further from what I had imagined.

Firstly, we chose to go to the Central St Giles branch of Byron Burgers. This was mainly because the restaurant was bright, spacious and airy (big mental tick). I opened the door and prepared myself for the usual ‘no dogs allowed’ greeting. Imagine my surprise when the waitress looked at Gibson, looked at my husband and I and simply asked ‘table for two?’ The staff had obviously had training because the service really was faultless.

After such a positive experience, it was then time to go to the show. Like at the restaurant, the staff at the Shaftsbury Theatre were incredible. The staff looked after Gibson during the performance and even took him out for a couple of walks while the performance was on. At the end, Gibson was waiting for us in the foyer, all harnessed up and ready to go.

During the drive home, I happily reflected on a fabulous night out. How amazing it was to have such a stress-free evening. To be treated like human beings and not to be made to feel like you are an inconvenience seems like such a simple thing to expect but people so often get it wrong. Just a little bit of awareness training really can make a world of difference.

So, to the staff of Byron Burgers and the Shaftesbury Theatre. A big thank you from me for getting it so right. I’m not sure if you realise but you totally made my night.

Disability isn’t a Face Value Matter by Holly Williams

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I like to think of myself as a rational, level headed individual, who doesn’t see herself as a victim just because she has a disability.  I also like to believe that most of the prejudice that I and other disabled people face comes purely down to people’s misunderstandings about disability and not deliberate dislike or hatred.

But now and again, I will read something that makes me question how able-bodied people really view us and whether there is a hidden agenda out there that believe we are the enemy. This week saw a partial triumph for many disabled people throughout the UK when it was ruled that the government went against the human rights of 15-year-old Warren Rutherford who has a severe medical disorder when they demanded that his family pay the controversial bedroom tax on the room used by carers who assist with his overnight care.

However, the government is now appealing the case, which also deals with the incident of a victim of domestic violence who was taxed on the panic room in her home, even though costs of legal action will total more than would be lost by dropping the case. I want to believe that the government’s motivation was purely financial, it wouldn’t make the tax any less problematic but it would at least make it seem less like victimisation.

But the fact that it is costing more to fight the decision than to abide by it leads me to feel that the government are doing so because of some ‘moral’ reason. That they believe that people like the Rutherfords are somehow ‘getting away’ with something. It’s a troubling attitude and worryingly I wonder if it is the sole reserve of just those walking the corridors of power or whether our elected ministers are just doing what they are meant to by reflecting the attitudes and beliefs of society as a whole.

I imagine, it is very hard for someone who doesn’t have a disability or a person with a disability in their family to understand fully the day-to-day difficulties faced by those who do. Looking at someone who uses a wheelchair, for instance, the instinctive assumption maybe that that person ‘just can’t use their legs’ but the extent of every disability goes way further than the symptoms that are visible to the passer-by. Sometimes a disability may even be invisible such as epilepsy, asthma, heart disease, cancer and innumerable mental illnesses. Disability impacts every area of your life and the life of those around you, sometimes in ways you would never begin to think about.

Only those who live with particular problems on a permanent basis have a full understanding of the impact they have and what is needed to allow them and their families to function. A civilised government should be one that caters for the needs of its most vulnerable citizens. It is very easy to look over the fence and see a greener grass but it’s vital to remember that something that might be seen as an unnecessary luxury such as an extra bedroom or regular massages might make the difference between a bearable life and one filled with pain. A misunderstanding of the fight for equality for disabled people is that everyone should be treated the same and disabled people are hypocrites for expecting ‘perks’ such as special parking. This is something I’ve written about before so I’ll try not to repeat myself. The point is that it’s not an equal playing field out there, that is the very nature of disability, and people should not be penalised for needing things that others do not. It angers and troubles me that  so much of the Conservative Party’s attitude to disability seems to be that it can be ‘motivated’ out of people. By slashing benefits disabled people will have to integrate more, that all we need is a short sharp shock. Not only is this idiotic, such policies send out the view to the general public that disabled people have it too easy. Everyone loves a scape goat, someone to vilify and blame society’s ills on and recently it seems like disabled people have taken on that mantle.

But the bedroom tax  is only one battle ground.  Around 14,000 people have already lost their mobility cars due to cuts. For many, such vehicles are their only means of accessing wider society and combating isolation. But many are denied this because they can ‘walk a short distance’.  Maybe so but facts such as these do not take into consideration the amount of energy it takes to do such a thing or the inconstant nature of many conditions. The person with a blue badge might walk from their car easily today but doing so might mean they need the rest of the week to recover.

Disabled people need to make themselves heard. As hard as it is for people like me to talk about our physical limitations, it needs to be done. Because if our problems aren’t seen, they won’t be seen to matter.

jing massage logo

Thanks to Jing Advanced Massage & Training!

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We would like to say a massive thank you to the team at Jing Advanced Massage & Training for raising a fantastic £1,000 for us by running the Worthing Marathon on Valentines Day. Since Jing make people feel amazing time and time again with their courses and training, they were looking to support a charity that’s also spreading the love and it looks like we fit the bill! We are incredibly moved by this gesture and the passionately raised money will go on to fund inclusive and accessible Sex and Relationships Education (SRE) Resources for disabled young people and their parents and carers. We desperately need equipment to produce our online resources so we can reach as many physically disabled and sensory impaired people as possible across the UK. Thank you so much again Jing and we wish you the best of luck on the 14th!

We will be appearing on the Victoria Derbyshire show on BBC 2 news, featuring our trustee Andy Trollope, talking all about out our Undressing Disability campaign. Keep your eyes peeled and we’ll let you know when we are airing very soon!

Don’t forget that the Undressing Disability book is available now as an ebook or hardcopy. Read all about 19 of our users highs and lows with sex, love, relationships and disability. All proceeds go straight back into the charity to help with all areas of our important work.

 

“Three years married and frustrated since my accident…”

By | Lifestyle, Mik Scarlet, The Love Lounge, Undressing Disability | No Comments

Hey Mik,
I just discovered your videos on youtube. I’m 29, female, been C5 tetraplegic for five years now since my accident, three years married and getting quite frustrated cause I still haven’t been able to reach orgasm after the accident. I love my husband and he loves me, but sex still leaves me just relaxed at most. We’ve tried different positions, I’ve tried “thinking myself to it”, but it won’t
help. I still have some minor feeling down there, but it’s like having sex while in a rubber suit really, so the sensations are nearly nonexistent.

I’ve almost lost hope, but after seeing your videos I’d really like to ask more about the techniques you use. I refuse to believe that I’ll never be able to come again.
Any ideas, suggestions or videos you could suggest?
Looking forward to your answer,
Freya.

Hi Freya, 
I suppose this is the unspoken part of spinal injury. We see stuff in the media about trying to get us to walk again, and hear stories of people not coping with their new life with SI but that is always put down to some other reason than sex and sexuality. But we know different eh? However much you miss walking, or dancing or kicking a football it’s sex that really cuts to the core. For most people with SI there is some change in function when it comes to sex, whether it’s dealing with pain or loosing sensation or function or both. This is why I have spent so much of my career in the media highlighting the topic, but usually on with a broader “disabled people have sex, get over it” manner. Then when I hit 30 I felt I was finally in a place to “come out” about how my SI impacted on my sexual function and how I had developed methods to cope with this. During my time in the media I had met a few disabled people who my technique had helped and I thought I should tell the world.
Now Freya, you’ve seen the videos I have online, including the one about “thinking yourself to orgasm”. However it doesn’t seem to be working. Can I ask have you and your partner tried it together? Have you tried getting your partner to help you with the first part of the thinking bit, the creating a head orgasm? I know that most of my advice seems to be aimed at people who are not in relationships, but that is because many of the people who ask for help are in that position. If you have a partner I have found the whole thing is easier. Make it a joint game. Another idea is to really let you fantasies run riot. If you have some sensation but it is  “like having sex while in a rubber suit” this is even better. I too experience fluctuating sensation so understand how it feels, but it’s then that the concept of head or tantric sex really helps. So why not chat with your partner and spend a few nights (or full days if you have time and the inclination) experimenting with anything that turns you on? You have to be the centre of it all, and you must guide what happens and how it’s done. Mostly as everything must be to get you there… You’re the important one for the moment.
More than that, don’t panic over this. I know that the awful worry of never getting back that part of your life can actually stop you getting there. It might be that you have lost the old orgasm that you once knew but that is not to say there isn’t a new one, a better one, just waiting to be discovered. I do know that any man deep down loves the idea of being the one who gives the woman he loves back her ability to orgasm, however she gets there, so trust me your husband will be a eager participant in whatever you get up to. But don’t feel less. Less sexy, less sexual, less of a woman. Don’t buy into those non-disabled tropes. We might not work like we used to, but we can work better. Remember that, and see what happens. It might not happen quickly, and it might not be exactly as you expected. But it will.
Lastly I must point out that these “thinking” orgasms aren’t like the old groin led ones. They are weird at first. I also understand they are different for everybody, so if I described mine to you it probably won’t help. Another thing to consider is that while I lost sensation for a while, it slowly came back. 5 years feels like a life time but it isn’t. I’ve had 35 years this April, yet stuff is still returning now. Not that I am giving you a false hope, but in my experience when the doctors say “that’s your lot” about what does and doesn’t work, take it with a pinch of salt. Biology is a weird master, so go with it. I will say that the more I had sex, the more I found my feeling worked. Tough life eh?
So, I hope this helps a bit? Basically try stuff, see what works for you. Who knows it might even be a rubber suit? If it is I know some great designers. One of the leading stars of the rubber world is herself disabled too! But whatever floats your boat, try it. Try it once, twice and keep trying stuff and see what happens. It might not give you back your non-disabled sexuality but I am sure it will give you something new… and better!
 Hope this helps? Maybe drop us a line and I’ll see if I can help more if not.
Good luck and have fun!
Mik
scatlife.com amateurfetishist.com analonly.org
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