Disability

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!

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 25^th 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.

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.

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

Saturday 6^th 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.

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

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.

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.

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 14^th!

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.

Today, I have finally got around to watching the BBC Alba’s documentary The Switch On which follows the story of 5 cochlear implant patients at Crosshouse Hospital in Kilmarnock. Now I am the first to realise that I am a little late writing about this and I am aware that there have been some fantastic blogs already written and which could be found on the Limping Chicken Deaf Blog here. But as usual I would like to stick my two pennyworths in.

Firstly I would like to say how refreshing it was to watch a programme which shows the reality of having a cochlear implant rather than all those viral videos that you see. I am not disputing that for some people their switch on may in fact be almost ‘miraculous’ but this is far from the norm and these videos do not show the long process which happens before the switch on.

I have a cochlear implant myself and to say it has been a success is an understatement but I need to give people a bit of a reality check. Firstly I think it is important to acknowledge that I cannot hear, nor ever will hear, in the same way that a person who has natural hearing can. I struggle in environments with background noise, I still cannot understand people with strong accents, and still cannot watch the television without subtitles. I have to be actively listening in order to be able to hear what people are saying and this active listening does not come naturally to me. I doubt it ever will now as I have had the implant for several years. That said, I do not and never will regret having my implant. I am able to hear better than I ever have and quite honestly life is easier for me now.

The programme shows some of the difficulties of going through the implant process which I can relate to myself. I faced many hurdles during the journey. Initially there are the numerous tests that you have to do to be able to find out if you are a potential candidate. These tests are mentally and emotionally exhausting. Not only is there the need for total concentration during them but also the worry that maybe you might not do well enough and therefore not be able to have an implant. You can literally be on tenterhooks for weeks waiting to find out whether you can go ahead with the operation or not. Then there is the big decision of whether you should actually go ahead or not.

The list of possible side effects and risks are long and need to be weighed up. Then the wait for your operation date and becoming more and more nervous as the days/weeks pass. Next the operation itself and the recovery period afterwards; my tinnitus was horrendous, I had an awful metallic taste in my mouth, and I felt generally awful after the anaesthetic. Finally the anxious wait to find out if your operation has been a success.

You don’t see any of this in the viral videos.

The Switch On shows different experiences at switch on, from total disappointment to one of pure joy and I think that this is important too. It highlights the long rehabilitation period necessary and the commitment that is needed. Driving back and forward to a hospital miles away requires a serious financial and time commitment. It is essential that you do all the exercises and activities that the implant team suggest to you afterwards and that requires commitment too. I personally think the year after I had my implant switched on was the most demanding and tiring year of my life to date. I was continuously exhausted with having to decipher what all the sounds I was hearing were and no one had really warned me about that.

I am aware that I am making having an implant sound like a very negative experience when in fact this wasn’t the case. There were many positives and these did outweigh the negatives. I did cry many tears of joy; the first time I heard my son’s voice in a long time, the first time I heard music again, the very first time that I heard the birds sing, speaking to my Granddad on the telephone, the list is endless. I just feel the need to highlight all the other tears too and am so pleased that The Switch On does.

Why, I hear you ask. There are two main reasons for this. Firstly I strongly believe in informed choice. How can a parent or deaf person make a decision about whether to go ahead with a cochlear implant unless they fully understand the positives and the negatives? Frequently people think of the negative as being the cochlear implant not working, and whilst I agree, there are other negatives if the implant is successful which are not spoken about as often. The second reason I am pleased is that as a cochlear implant wearer myself I live daily with the misconception that I can hear miraculously like a hearing person does. This misconception makes my daily life so much harder. I constantly have to explain that whilst I have an implant I still need someone to look at me and I still use interpreters in some situations for example.

My heart literally sinks when a well-meaning friend tags me in one of those switch on videos on Facebook. I will now be able to respond my recommending that they watch this documentary. My hope is that more documentaries like The Switch On will be made and shared.

I’m taking a break from my usual disability issues and general soap-boxing, to remember and pay tribute to a remarkable individual who passed away last week, leaving this planet a little less wonderful. David Bowie died of liver cancer on the 9th of January, a few days after his 69th birthday. I heard the news on Monday morning when I turned on TV. Seeing the star’s familiar face, my first thought was that maybe he had a new album out or was touring again. It was only after a few minutes that I heard the tragic news and my reaction was very strange. I didn’t understand. What were they on about. David Bowie dying of cancer. What a ridiculous idea. In that moment of shock, I couldn’t comprehend the notion of something as base, cruel and downright, well, ordinary as cancer ending the existence of such a remarkable creative powerhouse as Bowie.

But I think my disbelief says something deeply profound about just what Bowie achieved in the six decades he graced the music charts.  I found it hard to get my head round him dying because thanks to his originality and creativity I didn’t think of him as a flesh and blood human, but more of an entity, a creature of art and music, so self-crafted that the idea he could die jarred with my perception. There is so much that people of my generation and younger take for granted in popular culture that we can trace back to Bowie and his contemporaries. Today we are so used to the idea of gender fluidity, boys who look like girls, girls who look like boys; of pop stars suddenly completely changing their image that its hard to see it as more than another gimmick. But when Bowie burst onto the scene back in ’69 with his quilted catsuit, flame red hair and mismatched eyes, arm draped suggestively around the shoulders of his bassist as they harmonised in Starman, it was new, it was shocking. It was like something from another world.

Of course, there are many bands and singers who blazed a trail ‘in their day’ only to become associated with that place or time, but Bowie would never be that. Yes he would give the public these iconic images, Ziggy, The Thin White Duke, but almost as soon as they were seized on by his fans he would be on to the new idea with an almost ADHD attention span, always looking for something new to keep his interest. You had the sense that he never did something because he thought it was popular or would sell but simply because he wanted to do it. He was just blessed so that most of what he did do was remarkably good.

And it wasn’t just music. Writing, painting, design. It seemed like he just wanted to get what was in his head out for the world to see anyway he could. Acting too, who else could add that same otherworldly, beautiful uniqueness to films such as The Man Who Fell To Earth or Labyrinth. And he was beautiful, strikingly so. I’m not afraid to admit that one of the reasons I liked him was because like so many women (and men) I found him wildly attractive. Those miscoloured eyes, flawless white skin, uneven smile and slight build seemed to possess a exotic sexuality that was spellbindingly ethereal. Yet watching him in interviews, you get the sense that the man, the human who had been born plain David Jones in Brixton London, was a quiet, reserved, intelligent person, a shy individual prone to deep thought. Maybe that was the true reason for his many alter-egos, a method of displaying to the world how he felt and what he thought without them getting too close.

We very often use the phrase ‘music artist’ to describe someone with the ability to sing, play or compose. But while it is a gift to be blessed with such a talent it doesn’t necessarily make you an artist. True art challenges, it looks to see the world in a different way, it moves people, upsets the status quo and makes us ask questions. It changes the way we think. Bowie was such an artist.

Even nearing the end of his life when most people would have quite justifiably withdrawn from work to inwardly ponder their own tragic condition, Bowie kept writing, kept creating, using his disease as inspiration to create more art. I defy anyone, even those who didn’t like his music, to watch the video for his final single Lazarus, see him lying in a hospital bed, face bandaged, buttons over his eyes singing those haunting lyrics ‘Look at me, I’m in Heaven, I have scars no-one can see’ and not have some kind of reaction. How fitting that his last album was released just two days before his death and how right that he chose to have no funeral, no public monument to the man who lost himself behind his own creation and music. For although David Jones, the unassuming gentleman artist has died, David Bowie, his creation, his music and his iconic image will live on for decades to come.

Eulogy

By Holly Williams

From cosmic dust the call has come

They have beamed up Major Tom

Gleaming Glam Rock stella light dims

In cold, inky headlines and disbelieving cyber tweets

My mind, like once more in adolescent stupidity

Struggles to understand, how can a music-painted false-Christ

Really be human flesh, prone to illness

and not some ethereal alien from dimensions unknown?

But then, again

He wasn’t man

He wasn’t woman

He wasn’t human

But a being of his own creation

Sending out the signal through vinyl and modem

to generation after generation of lonely outsiders in poster-pasted bedrooms

You can be what you want to be

What you choose to create of yourself

Time scurries forward and each moment alters

A constant wave never at rest

Casting up changing guises

To mark the public eye with their un-judging commentary

Icons of sound and vision

Now only effigies of the man who was never there

Ziggy’s guitar lays silent

Sanity had returned to the lad

And young Americans mourn the Thin White Duke

I watch with thousands as the owl-winged Goblin King takes one last flight across the fantasy sky

Tears in our eyes as the world falls down

He took to the stage for one final encore

Laid wasting flesh and voice naked and aged before us

His departure merely another incarnation

To leave this planet darker without his alien halo glow

Journeying ever onward