Do My Wheels Look Big In This?

Disabled people want and can enjoy sex…

Same Difference

This is a guest post by Geek ‘n’ Proud who Tweets @geeknproud42.

Do my wheels look big in this?

Why am I asking this? To clarify, I am not talking about whether your wheelchair, if you use one, has a good fashion sense. However, I am going to discuss a topic which I hope you will find equally, if not more interesting, and that is the potential frustrations that many people with disabilities can face, with respect to sexual and romantic relationships. I speak from the perspective of mainly my personal experiences, and hopefully I will be able to draw some conclusions from it, which may be useful to you.

So, before we start with my story, let’s remember that, although I can tell you what worked for me, there is not one magic bullet that will ensure that everyone who has a disability will have a happy and fulfilled…

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Why being called a medical “enigma” or “puzzle” is not helpful

A blog post on being a medical enigma, how it feels to be labelled as such…

craftyinsomniac

A few days ago I was talking to a friend of mine (who also blogs and can be found at
https://danonwheels.wordpress.com/) and we got onto the subject of doctors, I had had a particularly unhelpful doctors appointment where 95% of my issues and concerns had been dismissed as something that she couldn’t do anything about, now I’m not saying that my GP isn’t good as she is but as usual my complex medical conditions leave her (like me) with nowhere else to turn to get help. Now while this is more than a little annoying it seems it is a regular occurrence, not just for me but for pretty much every other disabled person I know. We were discussing this further and the term “medical enigma” and medical “puzzle” came into it, both of us have heard this on many many occasions, and on those many occasions we had…

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The Taboo Around Disability And Sex Limits Everyone

Same Difference

There remains a heavy taboo around sex and disability in our culture. Research by the charity Scope found that only 7% of non-disabled people have dated a disabled person, while disabled young people are let down when it comes to sex education, often receiving none at all, or nothing appropriate to their needs.

The writer and activist Penny Pepper, who writes extensively about disability and sex, including in her erotica collection Desires Reborn, told me: “If disabled people aren’t having sex, they would like to. And the reasons they’re not are overwhelmingly to do with the barriers in society. I’ve known quite a few disabled people who [because of this] have resigned themselves to never having sex.”

This isn’t just wrong because of the obvious: sex is fun, enables procreation and for many people is vital for wellbeing. It’s also wrong because it’s part of a…

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A Simple Idea, A Huge Help

Some of you may already know about the Google “doodles”, those renditions of the Google logo on its home page that change from time to time to celebrate great people, works of art, inventions, notable anniversaries and other occasions.  Sometimes the doodle is interactive, containing a small video or game to play but most of the time it is a temporary image which if clicked links to more details of the occasion it has been created to celebrate.

Today’s doodle is an image of a tactile pavement, as seen in cities and towns the world over.  Whilst these areas of paving can be horrendous for wheelchair users, they are an essential tool in safe navigation by blind and partially sighted people and there’s an interesting story behind them.

GoogleDoodle

The inventor of these paving slabs, Japanese man Seiichi Miyake, found out a close friend was losing their ability to see clearly and decided to try and help.  Using his own finances he started development on what he named the Tenji block in 1965, completing development and introducing the blocks in 1967 outside a school for the blind in Japan.

Many people will now be familiar with the “knobbly” or “bumpy” blocks on the approach to road crossings or at railway platforms but there have been other designs used to denote various hazards and to guide blind and partially sighted people in particular directions.

These blocks are a simple idea that became hugely successful as they can be felt either with a cane or through the feet.

We Are IT…

We are IT.  We are Support.  We are the NHS.

This is the slogan currently being used in an advertisement promoting IT related jobs in the NHS.  The advertisement itself is bold and dynamic, showing how IT systems form the backbone of the NHS and help to change, improve and even save lives.

But there is a lot more to the NHS than IT systems, software and hardware; there are the components sometimes known as wetware or meatware – the people who use these systems to assist in looking after patients.

These people are nurses, doctors and consultants.  They are surgeons, health care assistants and domestic staff.

These people are dedicated to providing first class patient care.  They are highly skilled, well trained, professional and human.

Whilst these people are all experts in their own field, and confident in what they do day in and day out, they are not always experts in IT and a lot of them aren’t confident when systems do something unexpected, as can happen.

That’s when they call us in IT support and say things like “Oh I’m stupid when it comes to computers” or “You must get fed up of me calling” and all sorts of similar phrases.  We also get lots of people apologising for having forgotten their passwords.

With these people I like to turn the statement around and show them that they are not stupid/thick/clueless/whatever.  I take their job role and ask them if they would expect me to be able to do it.

For a nurse I might respond with “OK, so you take blood samples, if you asked me to do that I’d feel stupid and wouldn’t know where to begin”

For a consultant I might explain to them that if they asked me to diagnose an illness in a patient using the patient’s notes and scan results then again I wouldn’t have a clue what I was doing.

The point is these people, claiming to be stupid etc actually aren’t at all; they just have different skills and knowledge and that is important, as without this the hospital simply wouldn’t be able to function.

We need people who have knowledge in IT.  We also need people with knowledge of the myriad of diseases and impairments that the human body can suffer.  We need people who know what is needed to keep the place clean and hygienic and we need people who can operate the complex clinical machinery that detects and scans and probes, seeking out causes.

That slogan up above?  I think it would be more accurate if it read “We are IT.  We are support.  We are one part of the NHS machine.”

 

 

A Wheely Accessible Gondola

In November 2017, as part of my 2nd European road trip, I found myself in Venice.  Not completely by chance – I had plans.

A couple of years prior I had seen a video showing how Martyn Sibley was able to take a gondola ride in Venice seated in his wheelchair.  I love boat trips so naturally I had to have a go.

The drive to Venice from Monte Carlo had been pleasant and driving into Venice itself means a journey across a bridge which carries roads, railway lines, cycle paths and pedestrian pavements away from the mainland of Italy.

At the other end, actually the entrance to Venice, were armed soldiers and armoured vehicles, which was a little intimidating, but they just waved the traffic through in the direction of a small car park, where I was able to find a space and then found that disabled people paid just 2 Euro and could park all day, whereas everyone else had time limits.  Noting the soldiers nearby I did briefly wonder what would happen if you were to over stay your time…

Exiting the car park I approached the nearest building which was a ticket office for the water bus service, where long queues of people jostled to get through to the boat.  I noted that there was a separate area for wheelchair users to access the boat as well.

Having a look around and watching a few of these water buses go by, along with lots of other types of boat was fascinating.  I was almost tempted to grab a gelato from a nearby shop and sit there for a while but I had a ride of my own pre-booked and didn’t know where the jetty was that I needed.

Finding a map on my phone I located the jetty and made my way over, passing a funeral home whose staff were busy loading a coffin into a hearse, before I arrived at the correct place.  It was obvious which jetty was the right one as it had a lift attached to it, looking like a platform type lift that wheelchair users will have seen and used in various places.  In the water a gondola, beautifully turned out with polished wooden surfaces and glinting brass adornments.

I approached the 2 men on the jetty and explained that I had booked a gondola, asking if either of them were the gondolier.  Disappointingly neither was wearing the stereotypical striped jersey and hat but one chap was indeed the gondolier.  Together they prepared the lift for use, which involved obtaining a wired industrial type remote control and plugging it in.  While one chap operated the controls the other helped position me on the lift and, after being swung out away from the jetty and over the water, I was lowered into the gondola which at first felt a little unnerving, especially on leaving the lift and entering the gondola proper as it was rocking and bobbing about with every movement and felt very unstable.

The gondolier then started positioning me in the boat, explaining that they are built asymmetrical for stability once the gondolier takes his position and starts to propel the boat.  This was something I’d never noticed or heard of before but once mentioned I could discern that the front wasn’t quite straight.

Whilst the gondolier was making everything ready for my trip the gondola was rocking a fair bit and I found myself holding onto the frame of my chair tightly, whilst realising that that wouldn’t be any help if the boat did overturn.

When he was ready we departed the jetty and headed out into the grand canal.  The width, amount of traffic and noise was staggering.  I noticed that as we were in motion the stability of the boat settled down and it felt very secure.  I started to enjoy the ride, taking photos and even a few seconds of video.  Here I was, riding a gondola in Venice!  Quite possibly a once-in-a-lifetime experience.  The architecture of the buildings lining the sides of the canal and the light fittings at corners were stunning.

After a while on the grand canal we turned off and into narrower canals with quieter waters, where I spotted and marvelled at bins being emptied by workers on boats and a fire service garage full of red boats.

Even here in the quieter canals there were a good variety of boats, from other gondolas to pleasure cruisers and at one point a power boat, chugging past gently.

I did notice, as we passed under bridges, that a lot of people would turn, looking in our direction and smile, reaching for cameras and phones.  By the same token I was smiling back and taking photos of the bridges.

I had booked an hour-long journey and that hour flew by.  Soon we headed back to the jetty and, after being hauled out of the gondola by the lift, I was back on solid ground and handed over my 160 Euro to the lift operator.  Pricey but worth it.

I headed back to my car and, starting the engine and getting myself together, I reflected on the fact that I had just taken a gondola ride around Venice, which is pretty awesome in itself, and I had done it without having to leave my chair.

I drove away, back over the bridge to the mainland and on, toward my next adventure.

 

 

Experiencing the Caledonian Sleeper

For those that don’t know, the Caledonian Sleeper is one of only 2 sleeper train services still running in the UK, the other being the Night Riviera which goes from London to Penzance.  The Caledonian Sleeper runs services every night except Saturday from various parts of the Scottish highlands and lowlands to London (and back again), via a few other stopping points.  It had long been a dream of mine to travel on the sleeper and so last year I made that dream a reality.  This was my experience.

After packing clothing, overnight items, my APAP machine and some snacks and drinks I drove from Yorkshire to Fort William, rode the sleeper to London, stayed overnight and visited the British Library before riding the sleeper back to Fort William and then driving back home.

Such a great experience. First the road trip through the highlands, where I used to live and which was stunning. Then arriving at the station to find that the platform staff already had a ramp out for me right next to the accessible cabin (wheelchair user).

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I asked one of the on board staff if they’d mind taking a photo of me by the name of the train and they duly obliged, with a smile and a bit of chatter.  I handed the lass a fiver as a thank you.

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Boarded the train and was shown around the cabin, all the features and the toilet etc by a train manager, toiletries and a food menu laid out on the bunk, all presented nicely and bottles of water in a rack by the window.

Made myself comfortable and had a look around, opened a bottle of water when the train manager came back with a coffee for me and asked if I’d decided on breakfast. I chose the scottish cooked breakfast and coffee and was left alone again, with the train manager advising that if I wanted or needed anything I just had to press the call button as my wheelchair wouldn’t fit down the aisles to get to the lounge or restaurant cars.

Eventually we set off (I’d arrived well early in order to make sure nothing went wrong) and it was a lot of fun being able to watch the highlands slide by outside from my own private room, being able to lay down and watch movies on my laptop whilst travelling. I’d brought a couple of beers with me and drank those before turning in for the night as it got darker.

I didn’t get much sleep – the journey itself was smooth and relatively quiet considering, but there was the odd time where there would be a jolt that woke me, plus I was so excited as this was something I’d wanted to do for years – I was like a kid at Christmas!

Approaching London in the morning I was brought breakfast in my room and there was my only disappointment of the entire experience – I’d expected it would be served on a plate and freshly cooked. What I received was a cardboard box with greasy congealed food inside, most of which I ended up leaving. That was the only disappointment though and I resolved that on my return journey I would opt for the porridge – can’t go far wrong with that.

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I arrived at London and was surprised to see the ramp had been placed at the door before I’d even left my cabin and I was straight out onto the platform where a chap with an electric buggy thing asked me if I needed a hand with my luggage (2 backpacks and my APAP machine).  I snapped a couple of shots of the loco that had pulled the train.

Now to the return journey. Arriving at the station which was eerily almost empty, I promptly fell over backwards in my chair whilst trying to reach for a drink from one of my backpacks and instantly had people helping me up again. The signs announced that the train was delayed but no big deal – I wasn’t in any rush, so I got a pasty from a pasty shop I found (horribly overpriced and hotter than the sun!) and chilled for a bit.

When the train arrived and the staff started boarding I was again shown to my coach where there was a ramp waiting, shown to my cabin and asked if I needed any help which, since I’d already travelled down on the sleeper I didnt. For this journey my cabin had been stocked with more bottled water and the toiletries that first class passengers get (I’d only booked standard class). I assumed that they’d either run out of the standard toiletries (which are nice enough) or that they had been put in my cabin by mistake but either way it was a nice surprise.

Just after departing I was again brought a coffee and the train manager gave the spiel about pressing the call button if I wanted anything. I told him that, although I had ordered and paid for the scottish cooked breakfast, I’d really rather have the porridge and coffee come the morning, which he made a note of.

Again as it got darker I turned in and again I didn’t sleep much – still hyped up that I was once again travelling up the country on a train in my own private cabin with a bed to sleep in. I found it fascinating watching the station staff and train crew re-arranging the train at various points during the night (it splits into 3 somewhere) and I had a chuckle as we departed Leeds station – I could have left the train there and been home not long after.

I was awakened in the morning by the train manager entering the cabin – I’d requested breakfast at 7 and he’d spent some time knocking on the door apparently before opening it himself, I must have been fast asleep. I was presented with my porridge and coffee, which I enjoyed as we rolled across Rannoch Moor – the sun shining on the snow-covered mountain tops and mile after mile of empty moorland, until I spotted a pair of walkers hiking across the scene.

I spent some time outside of my cabin opening the windows in the vestibule and getting some brilliant photos and videos as the train meandered it’s way back towards Fort William. I got speaking to an American woman who had brought her little girl on holiday and decided to ride the sleeper as part of that.

Returning to my cabin I washed and dressed, packed my gear away and made ready to leave.

On arrival at Fort William there was the chap on the platform stood waiting with the ramp, like a soldier on parade I remember thinking. Train stopped and I loaded my baggage on my chair and left the cabin. I asked the chap with the ramp if he would mind grabbing a quick snap of me as I came down the ramp. He obliged with a smile and I gave him a fiver in appreciation.

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Leaving the station entrance I was glad to see my Volvo, still sitting there patiently and fully intact, waiting to take me home.

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Driving back over Rannoch Moor, which I’d gone through on the train not long before, I reflected on what a great experience I’d had and decided I’d have to do it again when the new rolling stock was in use.