A World Without Disability?

Recently, a documentary on Down's Syndrome and disability was shown on Channel 4 in the UK. It provoked a great deal of debate into the possibility of a world without disability. I have to confess, I didn't see it myself, nor was I engaged in any of the subsequent debate which occurred on Twitter. I caught up with the discussion a little later, and it was both fascinating and thought-provoking. My dear friend Karen had been much more involved in the debate, and approached me with a beautifully written piece, on the possibilities of a world without disability. It's a difficult subject, and one which she tackles bravely. All thoughts and opinions are hers; some I agree with, some not. And that's ok. Pieces like this need discussion. They need debate and polite discourse. Please enjoy, and feel free to post your thoughts in the comments section, or to chat with either myself or Karen on Twitter. 

Some thoughts prompted by 'A World Without Down's Syndrome?'

Last week there was a documentary screened called 'A World Without Down's Syndrome?' I didn't see it, but it provoked intense debate on my timeline with people expressing many different opinions. It is an emotional debate and there are lots of things about it that I'm not sure how I feel. I wouldn't abort a pregnancy because it was Down's, but I strongly believe in the right to choose. It is difficult to police a system based on choice.

Also I think it is worth making the point that Down's isn't just about developmental issues, there are often associated heart defects. I knew someone who lost her six year old brother to a heart problem associated with his Down's. On the other side is the fact that although Down's is a spectrum, like life, most people with the condition are not very 'disabled' by it. By that I mean that not only do they walk, talk, see, hear etc, but they work, have relationships, drive cars, learn foreign languages and so on. There may not be any neurosurgeons with Down's, but how many 'regular' people are neurosurgeons? If we ever got to the point of pregnancy screening that could accurately predict academic achievement, would people abort any pregnancy that couldn't result in a neurosurgeon? That wouldn't leave very many!

The programme made me think about the wider issues of disability in society. I stated that surely a world without disabilities would be good. I still believe that. Some people don't want to see a world without disabilities, obviously they are absolutely entitled to their opinion, but I disagree. Please note that I am NOT advocating terminating pregnancies that will result in disabled children. I am talking about a possible future world where we could intervene to surgically prevent a disability from ever having occurred. Now I know this gets into a very murky area and the shadow of NAZI eugenicists. I am NOT saying that someone with a disability is worth less than anyone else. They are absolutely as important and they contribute to society and should be totally respected. What I am saying is that if I had a choice to be born blind or sighted, I would choose sighted. Wouldn't you? If you were pregnant at some future date and you knew they could safely operate on the foetus to prevent it being born blind, wouldn't you do that too? This is a controversial area I know and I am very sorry if I am upsetting anyone, that isn't my intention.

This does call to mind the episode of Star Trek The Next Generation where the Enterprise is saved because of the technology in Geordie's visor and he says if he hadn't been born, that tech would never have been developed. But it also reminds me of the ep where Riker becomes a member of the Q and grants Geordie what he knows is his greatest wish - the ability to see. Two sides of the coin neatly illustrated there by Star Trek. But I digress....

It is also true to say that much disability develops later in life and isn't present from birth. We work hard to try to prevent such disabilities though and I personally think that is right. For instance we treat glaucoma to try to prevent blindness. If we think we should just let nature take its course, why do we treat illnesses? There is also a fine line between illnesses and disabilities sometimes, like with Cystic Fibrosis.

When cochlear implants were introduced, some people in the deaf community reacted angrily and accused those having them of being traitors. I never understood this. If their condition was treatable with an implant and they don't choose to use it, that is absolutely their choice and should be respected. It is not compulsory. But for people who do choose it, why on earth shouldn't they? I do understand that a strong sense of community developed as a result of feeling excluded from mainstream society to a certain extent. It is sad that people have been excluded and more should be done to make things inclusive, like signing and subtitling on more television programmes/films/theatre performances, more awareness of the issues etc. But I don't think having a strong sense of the deaf community should ever result in criticism of people who wish to and are able to take advantage of a new technology that can help them to hear. Why is it 'better' to be deaf?

It was pointed out to me (very nicely, truly) that if my mental issues had been seen before birth, I could have been terminated. I wish I had been. It isn't as though I would ever have existed, nothing would have been lost. Someone else would have been born in my place, someone for whom life wouldn't be so miserable. My life has no value to me or anyone else. Don't get me wrong, I'm not saying my mum, for example, doesn't love me. She does. She would have loved another person born in my place just as much, she would have lost nothing. Me, this specific entity of me has no value. Perhaps future screening should focus on the happiness potential? If such a thing were ever to be possible, that might be the greatest application of screening. Whether or not someone will be happy is ultimately much more important than whether or not they can walk.

Screening in the future is likely to become much more accurate. We need to think about these issues now. I don't want to see 'designer babies.' I don't want pregnancies to be ended because of the gender or sexuality of the foetus. In China, according to the BBC, for every 100 girls born there are 119 boys, as a result of sex-specific abortion. This is incredibly worrying, but again under a system of choice, it is hard to police.

All these issues are difficult ones, who decides what is a 'disability' in the first place? In some circumstances I think it is pretty clear, but in others it is a very fine line. Developmental issues, for instance. Who's to say how fast someone 'should' develop? All children develop at their own speed, just because some are outside what we have considered to be 'normal' does that mean they are disabled? Intelligence varies widely among the general population, who decided where the line should be drawn that says those below it are disabled while those above it are 'normal'? Everyone is on a spectrum. Perhaps we just need to realise that and stop classifying people at one end of that spectrum as intellectually disabled? Besides which there is a lot of overlap. To go back to the programme that started me thinking about all this in the first place, there was a woman with Down's featured who spoke two languages and was hoping to marry her long term boyfriend soon. She is doing better than me on both counts. Who's disabled?

 

My thanks to Karen for such an erudite, thought-provoking piece. You can follow her on Twitter @KarenKTS11

A Load of Bollocks!

It’s the 18th February 2016. Not a particularly notable date for most people. For me, however, it is one of some considerable significance. It is a day I celebrate, and with good reason. Today marks three years CANCER FREE (and also a bollock short, but that's neither here nor there!)

The NHS gets criticised heavily, from people within the UK, to our glorious politicians, who continually tell us everything that’s wrong with it, and then promptly do nothing to fix said issues. Similarly, it comes under considerable attack from right-wing Americans, who use it to point out all the flaws of Universal healthcare, and how much better off they are paying ten years earnings to fix their ingrowing toenail.

Well, for me, the NHS has been nothing short of bloody brilliant. I was diagnosed, referred to the hospital, and under the knife, within the space of THREE WEEKS. Alongside the self examination which detected the tumour, there is absolutely no doubt that the NHS saved me a whole barrage of treatment. No chemotherapy. No radiation. One operation (and a hell of a lot of follow ups, but who gives a shit about that!). My oncologist is one phone call away, if I have any concerns, and when, last year, I did find some swelling in the lonely testicle, swinging down below, all on it’s Todd, I had an ultrasound within around ten days.

In short, I owe my life to the NHS. For fifteen years, it was a privilege to work for them as a nurse. I have needed their care on numerous occasions; none more so than in the wake of a cancer diagnosis. And they have never let me down. Not once.

It is entirely due to the care and kindness of the surgeons, oncologists, nursing staff and doctors that I am still here, being a belligerent old fart..

I have another two years before I can declare myself “cured”. I am technically “in remission”, To me, those are just words. I pay much more attention to blood tests, and have become intimately acquainted with terms like AFP, HCG and LFP (tumour makers). And as long as they stay within the desired parameters, the cancer remains GONE.

With every passing anniversary, the likelihood of it returning lessens considerably. That said, I will still remain vigilant, keeping an eye on ol’ lonely-ball.

Alongside the incredible support from the NHS (and of course, family and friends), the support I have received from people on Twitter has been beyond measure. Extraordinary kindness from people whom I have never met. You know who you are. And I am more grateful for your support and continued friendship than you could possibly imagine.

I was bloody lucky. I had no great battle to contend with. I am equally, acutely aware of the difficulties and hardships others have faced, and continue to face on a daily basis. My cancer pales into insignificance, by comparison. And I hope, where I can, that I can offer the same support that has so kindly been afforded me.

But today. Just this one day. This one’s mine. It belongs to me. And I’m grabbing it with both hands!

I’m Going Slightly Mad…!

Some of you will have already read my post on anxiety, depression and panic attacks. If you haven't, it gives you an insight into life with anxiety related disorders and how I manage them. (You can find the post HERE).

On Friday, I posted the following on my Twitter account…

“Mes chagrins, mes plaisirs, Je n'ai plus besoin d'eux, C'est payé, balayé, oublié Je me fous du passé Je Ne Regrette Rien......

Aujourd'hui, ça commence avec toi…”

For those who don't speak French, it was intended as a farewell. The first part consists of the lyrics to the beautifully poignant Edith Piaf song, Je Ne Regrette Rien. The last part is my own addition.

“My sorrows, my pleasures, I do not need them anymore, It is paid, swept away, forgotten. I do not care about the past. I Regret Nothing ...... Today, it begins with you.. Goodbye until we meet again”.

It isn't (or rather, wasn't) a suicide note before anyone assumes so. It was a farewell to Twitter, to social media. I had intended to go to bed, get up in the morning and close my account, blog and quietly withdraw from an online presence.

For reasons best known to absolutely no one, least of all me, my brain had decided isolationism was something I needed. Since I dislike goodbyes, I thought a poetic departure felt right.

Sleep eluded me when I went to bed. I wasn't sad or depressed, per se, just highly anxious and with an overwhelming desire to shut the outside world out and be left alone. As the day progressed, panic attacks took their hold, and they did so with gusto. There were a couple of times when I honestly thought I was having a heart attack. I've had severe panic attacks before, and two nervous breakdowns in the past, so I knew it was simply a case of riding it out. Only it didn't pan out quite as well as I'd hoped. The attacks continued long into the night. It is fortunate that at 3am the night after my last tweet, no shops within my vicinity were open, or I would have fallen off the wagon. As some of you may know, I am recovering alcoholic. In point of fact, today marks 16 years since I quit drinking. On that night, I could have cheerfully sunk a bottle of scotch.

By the morning, after a night of almost constant panic, and a good deal of physical pain, courtesy of the inevitable flare up of my Crohn’s disease, I was physically and mentally exhausted. I had been medicating with diazepam throughout the night, to little effect. 10mg is usually enough to stave off a panic attack. By 10am, I think I had taken around 50mg.

The morning was something of an exhaustive haze. My usually voracious appetite had vanished, my head felt as though Slayer and Slipknot were having a battle of the bands inside my brain, and the exhaustion and tiredness was indescribable. I haven't felt so low and burned out in years, decades even. My limbs ached like all hell, to the point I could barely stand up.

Recognising that this was something more serious than my usual “normal” panic disorder, I rang my GP, who gave me an appointment that evening. (Yes, our NHS is awful.. Weeks of waiting..!)

I explained everything to my Doctor. He did a few tests. Notably, my blood pressure was incredibly low. He took blood to rule out anything physical, and concluded that I had a “minor mental breakdown”; essentially, what used to be known as a nervous breakdown.

My regular dose of SSRI antidepressants has, as a result, been tripled in dosage, and my nighttime tricyclic medication has been increased by double. Until the increased doses take full effect, I have to counter the inevitable panic attacks with diazepam.

For the last two days, all I have wanted to do is sleep, or at the very least, rest. I've had no interest in food, although have been determined to ensure I DO eat, as I have no desire to add keeling over to the mix!

Today, I feel MUCH better. Physically and mentally exhausted, and emotionally somewhat numb; a curious sensation for a depressive person. But, all in all, I'm starting to level out again. It helps that I have something positive upon which to reflect; the previously mentioned anniversary of my parting company with the grog. And the knowledge that, even in my darkest hours, when the desire was strongest, I managed to stave off the intense desire to bury my head at the bottom of a bottle.

I have to go back to my GP on Thursday, to monitor how I'm progressing, and I'm being referred to a psychologist, with the option to voluntarily cancel the appointment when it comes, should things be back on an even keel, which I'm hoping they will.

Quite what precipitated all of this is anyone's guess. Mine is that I'll never really know. Past experience has taught me that these things crop up out of the blue, for no obvious reason. Social isolation and the desire to withdraw from interacting with the outside world is a painfully lonely experience, and one I wouldn't wish upon anyone. As for the rest.

One thing I have learned through this, is how much people I have never met, care deeply. I have been inundated with messages on Twitter. I will do my very best to respond to them all, although it may take me a while. I cannot thank you all enough for the support, for caring, and for making sure I'm alive and kicking. I'm slowly getting back to some semblance of normality, whatever the hell that is (!), and I'll be back to being a belligerent old arsehole before you know it!

I'm incredibly grateful to each and every person who has sent messages of support or enquired after my well-being. You know who you are, and so if I don't reply to you personally, please know that I have seen all your messages, and appreciate each and every one of them. I'll do my best to reply, but for obvious reasons, my interaction with people may be a little limited for the next few days, and my concentration isn't at peak performance at present. Writing this has been incredibly cathartic, and my sense of humour is back with a vengeance, so with a little luck, and thanks to the extraordinary support of my Doctor (and our bloody brilliant NHS), family, and especially the support and kindness of those who I have never met. I've touched on what a “nervous breakdown” is like, however truly articulating it is next to impossible. I hope my words are the only experience you have of it. For most, I suspect, mercifully, you'll never have to go through anything like it. Some, unfortunately, will. And when you do, I hope I can offer the same support and extend the same kindness that has been shown to me in the past few days.

MentalOllie (fuck it.. If you can't own your own insanities and foibles, ‘tis a sorry state of affairs!)

Layton

Many of you will have already read about little Layton Boys-Hope, in my earlier blog posts.  I don't propose to dwell upon those, nor, given the nature of this post, will I be linking to them. For those who aren’t familiar with Layton or his family, Layton passed away, tragically, at a little over a year old, after contracting sepsis. This is about an ordinary family, in extraordinary circumstances, and their fight to keep the memory of their son alive. Like many of you, I am a parent, and cannot begin to imagine the agony of losing a child.

Recently, Thomson Holidays launched a competition to name an aircraft, and so when Dave, Layton’s Dad, tweeted that he had proposed Layton's name for the plane, it was a cause I was more than happy to champion. Which got me thinking... Whilst, of course, I am happy to promote it on Twitter, I thought perhaps people may like to know a little more about the family, and the little boy who I was asking them to retweet and vote for.

I approached Nichol and Dave, and asked if they would be interested in doing an interview for the blog. I am incredibly grateful that they agreed, and it is an honour and a privilege to share it with you.

Firstly, tell us a little about yourself and your family

I am David Hope from Sunderland Tyne & Wear, in the United Kingdom and my partner is Nichol.  We have been together for 13 amazing years.  I am a fully trained Telecoms technician, and Nichol is a stay at home mam. We have 6 amazing children 3 girls and 3 boys but unfortunately one of the boys, called Layton, sadly grew his wings and is now an angel.

You lost your little boy, Layton, tragically, to sepsis. Can you tell us how he contracted this disease?

Layton tragically left us in February of this year from sepsis, with chickenpox being a contributory factor as the cause. He had contracted chickenpox five days earlier and as many parents we just thought that it was a normal childhood illness, which every child gets, so it did not concern us as his older brother had also had them the week before.

On Sunday the 8th of February, Layton woke us up on the morning, appearing to be back to his normal cheeky little self, then things took a turn for the worse, and so we took him to the hospital where he underwent a number of tests, but sadly passed away in the early hours of Monday morning.

How old was Layton when he passed away?

Layton was 13 months old when he passed away, he had just had his 1st birthday on the 6th of January (we prefer to say he was one-year-old instead of saying 13 months).

Did you have any knowledge of sepsis prior to him contracting it.

We had heard of it but we were not fully aware of it.

For readers who aren't familiar with it, can you tell us what sepsis is?

Sepsis is a life threatening condition that arises when the body’s response to an infection injures its own tissues and organs. Sepsis leads to shock, multiple organ failure and death especially if not recognized early and treated promptly. It can be caused by a huge variety of different bugs, most cases being caused by common bacteria which we all come into contact with every day without them making us ill. Sometimes, though, the body responds abnormally to these infections, and causes sepsis.

Are there any charities or websites dedicated to raising awareness of sepsis?

There are, October is known as Sepsis Awareness Month, and in the UK, the main charity is called The Sepsis Trust and their website can be found at www.sepsistrust.org

There is also the Sepsis Alliance.

Layton's passing has obviously been a tremendous blow to your family. I think few of us, particularly those of us who are parents can understand what the loss of a child is like. Can you give us a small insight into the impact it has on you as parents, your own physical and mental wellbeing?

The impact has been like a train wreck, and a nightmare that you can’t wake from. It is hard to put into words of how we feel.  We feel numb and lost, and on some days we just feel so drained and tired we just want to sleep. For the first few weeks after his death we did not sleep, and hardly ate anything. If it had not been for one of my relatives giving us a kick up the backside not to be horrible to make us realize that we need to try and get a grip on things and start to eat I doubt we would be here talking like this now.

It is only now that we are slowly getting there, I have been diagnosed with severe PTSD, depression and anxiety. The hardest part of it all are the flash backs that I have and the nightmares.

How have Layton’s siblings coped with the loss of their brother?

This has been really hard on them especially James, who was three years old at the time of his passing. He became a little shadow of his former self and was so lost, as he lost his little playmate. His three sisters were the same our eldest, Reese, who was 11 at the time and took it really hard as she would look after him while we made our meals or done the house work.

As for his other two sisters, Brooke and Skye, who were nine and five respectively at the time, were totally lost and we tried to keep things as normal as possible. My proudest moment with them came two days after they lost their little brother, when they all asked if they could go back to school. They only missed one day of school, we really did not know what to do so we decided to let them go to school to try and keep things as normal as possible for them and discussed this with their school who gave them as much support as they needed.

You will notice that there are only four children mentioned; this is because our other son, Jenson was born after all of this, and came as a total shock to all of us, he was born on the 26th of July this year.

Recently, you were approached by a homeopathy advocate. Without dwelling on their nonsense, how much support have you had following their crass behaviour.

The support we have had following this has been overwhelming by a huge number of people on Twitter, yourself being one of them, they even started to donate to our GoFundMe page which was amazing! if it had not been for this support, I doubt I would have still been here to do this interview with yourself, because, as you know one of them encouraged me to commit suicide.

You've mentioned that you set up a GoFundMe page. Can you tell us more about it, and how people can help?

We set up the GoFundMe page with the aim of taking our children on holiday. We were actually planning a holiday in the summer when Layton passed away, and as a result of this we never had the holiday, as I went on sick leave from my job, so as we never had the money to have a holiday, so decided to set up the GoFundMe page in the hope we could give our kids that holiday that we were planning before they lost their little brother.

We had hoped that they could spend a few weeks having fun and not think about the horrible few months they have had. People can help by going to the GoFundMe page to make a donation using this link gofund.me/o93r7o

Your latest goal is to name an aircraft after Layton. Can you tell us a little about it, and where people can vote?

This is a competition that has been created by Thomson holidays to name one of their new 787 Dream Liner planes and people can visit the website and vote here http://nameourplane.com/name/fly-high-layton and if he gets the highest number of votes his name will be placed onto their new plane.

Keeping Layton’s memory alive is clearly very important to you, and thousands of people already know his name, and how he passed away. Aside from the aircraft, is there anything else people can do to help, especially in raising awareness of sepsis.

Yeah the main thing is raising the awareness of sepsis, but also how dangerous chickenpox can be, and that if you think there is something not right then seek medical help and do not be afraid to say to the doctor or nurse “could this be sepsis”. Also the Sepsis Trust has a link on their website to their online store where people can purchase wristbands, tie pins and other merchandise, such as Christmas cards, which have the Sepsis Trust logo, and raises money to help combat the disease and raise awareness.

There is obviously still a big hole in your family life. Have you been able to get back to some semblance of normality? How do you find the strength to cope on with day to day life?

We have tried to get back to some kind of normality we have good days and bad days but we are still not back to 100%. Something has changed with us and trying to explain it is hard. We know that we will never be the same people again as we are in that exclusive club that no one wants to be part of, and there is no way of cancelling our membership as it is for life. If it had not been for our other children and my many new friends on twitter I really don’t know how we would go on.

What advice would you give to parents in a similar situation to yourself?

I would say to them take things a day at a time, and when you find you need to cry then just do it, do not be afraid what people think of you as, unless they have been in your shoes they should not judge, and do not take offence if people start to ignore you, they are not doing it on purpose they just don’t know what to say to you.  

Also believe me when I say it you will get sick of hearing the saying "I am sorry" but once again this is because no one knows what to say to you.

And if people say things to you that you think are not the right things to say, they may be saying them because they are worried about you. The one thing I will say is make sure you try to eat and sleep; I know you won’t want to or don’t want to, but believe me when I say you will need every ounce of energy to get you through the first four to six weeks after the tragedy. And if you think you need help do not be afraid to ask for it, this is especially true for men as people think we need to be strong and keep it together; well this is crap we are allowed to fall apart and people will be there to pick you up, and they won’t think anything less of you if you do go to pieces.

Dave and Nichol, thank you for your time, honesty and candour.

I am extremely grateful to Dave and Nichol for agreeing to this interview, and for sharing what must be the most painful experience of their lives. Moreover, I am grateful for their friendship. Getting to know them has been an absolute privilege, one I wish had happened under happier circumstances. Their candour, dignity and bravery are qualities I have nothing but respect and admiration for.  I'm just a bloke with a blog, a Twitter account, and a platform to share their experience. All the credit for this post belongs entirely to them.

Please do take a minute to VOTE (clickable), and follow their progress using the hashtag #NameOurPlane No personal information is needed, nor your email address, so you won't be bombarded with spam.. It's literally ONE CLICK. Lastly, if you can, there’s a button below for donations to the family. Every little helps, so even if you can only afford a quid (or dollar), it WILL make a difference! You can also follow them on Twitter, @DaveHope80 and @NicholBoys where I am certain they will be delighted to meet new friends.

 

 

We may meet under tragic circumstances, but through the fires of hell are forged the friendships of forever

Layton Boys-Hope

6th of January 2014 - 9th of February 2015

Sleep well, little scamp..