A forgotten people HMD 2011

Archived  from my previous blog.

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I have picked this Untold story to share.  T4 is well documented – yet this programme designed specifically for the killing of thousands of disabled babies, infants and adults during the WWII is often untold or forgotten.

It is about those disabled people that were taken by bus into a beautiful historical building in Hadamar, Germany. It was a hospital. A place built to ‘care for the welfare of people’.  Disabled people were thought to be incapable of productive work (i.e. hard work) and this was the message given to the public in the papers and on film.  Work incapable disabled people were one of the first to go.  The treatment was the same for others with impairments,  for this place was a euthanasia centre.

” … make a clear promise to speak out against discrimination which judges some lives to be of less value than others today.”

[HMD 2011]

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Last year I went to Liberty Park in Overloon, Holland.

How far will we go to keep or win back our freedom?

It is here where visitors can look around the National War and Resistance Museum and Marshall Museum.   The park, the site of one of the heaviest tank battles, has a message – one that is relevant to each one of us today – freedom cannot be taken for granted.  It invites us to think about war and oppression. How far will we go to keep or win back our freedom? It was hard to make it into the door without choking  up.

I wondered about my own freedom and how much my life is valued?

As I write this I ponder over the current budget cuts that take away the liberating welfare support or health care disabled people rely on to survive.  In the UK it seems society values us less than ever before. Oppression and injustice is never far away. Whatever format it takes – it still damages lives and takes lives.

I read the exhibits, I looked at the photos of death, destruction, fear, hope and survival. I sat in the quiet, reflective memorial room. Where are the disabled people of Holland and elsewhere who were tortured and gassed, who is telling their story?  How many people have sat in this place and remembered our forgotten people?

Hidden stories

On the way round we saw the graphic images and videos of genocide to present day.  In Overloon they are not afraid to show it as it is.  It’s not for the faint hearted but worse not to look.

Life size photographs of children in their mother’s arms – both slumped on the street, dead from gas attacks in recent wars.  The video of survivors  with skin blown of their bodies getting help in the years after the Atomic bomb dropped on Nagasaki.  These are the images that stick in our minds, that make us tearful.

 

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However, much injustice is out of sight.  Travelling around Holland, looking at pretty houses and out onto fields of flowers and parkland it is hard to imagine the stories that unfolded in those very buildings and fields.  It is a reminder that injustice and denial of freedoms and liberty is often disguised, going on unnoticed for far to long, in front of our eyes.

Sometimes we open our eyes and see it happening – yet people do nothing. People knew what happened in that hospital – few spoke out and fewer still did anything about it.

Do you speak out against inequality and discrimination against others?

Injustice is part of my history as a disabled person  – and relevant to my life today.

It is relevant to all of us today.

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Never forget.

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Dogs, Dystrophy and Charity

Harrison_s_Fund_AdvertisingYou might have seen this advert recently – and fallen victim to what many have felt is false advertising. The advert was not to save a dog as it first appears – reading on you discover it is the latest controversial advert from the charity Harrison’s Fund.

Harrison is an 8 year old boy who has Duchenne Muscular Dystrophy and his father is CEO of the charity.

 

 

His father says on their website:

“I’m sorry if some people find our tactics upsetting, but the awful truth is that my son is dying and I’m willing to do whatever it takes to save him.”

 

This particular campaign involved two digital adverts – one featuring the dog and another a picture of Harrison. The idea being to show that people are more willing to support animal charities than those for children. Not surprisingly the one with the request to save the sad looking dog received twice as many clicks.

A debate then followed after his father followed up the publicity with further articles about the reasons behind the advert like this one in the Telegraph and also in the Huffington Post (and possibly elsewhere) – generating huge publicity for the charity.

It follows a word wide debate on their previous campaign “I Wish My Son had Cancer”.

Harrison_s_Fund_2Outrage

The first campaign was a shocker – and many of my friends who have Duchenne and similar types of dystrophy were as outraged and disgusted as me.

  • Disability Hierarchy

This is basically the damaging notion that one impairment/disability is more deserving in need or ‘worse’ than another (or gains more attention or legitimacy than another).  A social pecking order developed of ‘worthiness’.  It is one of the many disability research areas which looks at the effect this has on disabled people and society as a whole. A hierarchy can be influenced by how visible the impairment is, life span expectations, ‘curability’, pain levels involved or things like culture, religion, ethnicity and even politically.

e.g. it impacts priorities and moral issues e.g. if it is worse to live paralysed than it is with depression (according to our personal hierarchy of ‘what is worse’), we should allow paralysed people to die in euthanasia legislation, but not people who can’t stand life with depression – because its ‘not as bad’ or they are mentally impaired (lower down in the order).

A pair of Deaf twins, who were going blind, were permitted to be euthanised in Belgium because the government understood ‘how unbearable’ life would be – despite many Deaf Blind people living fulfilled lived. People often make choices like agreeing to vote for assisted dying laws, because they are ignorant of the truth and have internalised a hierarchy.   All people who feel they are in an unbearable situation should have support – but sometimes a person with a mental health condition gets prioritised for therapy and medication over someone with the same feelings that are put down to inability to cope with physical problems (and often not offered mental health support).  One is offered support to prevent them from killing themselves – the other is encouraged to pursue their request to die.

Dangers

Hierarchies allow human judgement of others, and judgement of our self worth to influence our decisions and life choices – often based on inaccurate information.  This is really dangerous. E.g parents are more likely to choose abortion of a child with Downs Syndrome when given negative impressions of what their life could be like as opposed to those who have had balanced information or met someone living with that condition.

As such, comparing illness or disability, and promoting one as being worse than another can be very damaging – especially when the effects of most conditions vary considerably from individual to individual.

No comparison

Comparing one illness to another and creating a hierarchy of impairments with the ‘worst’ at the top is never helpful.  How can any parent wish their child had  cancer? Cancer might take a child’s life yet some people with Duchenne live into their 40’s with improved health and social care.   A number of people have had both cancer and dystrophy…. and that’s pretty rough too.

You can not define what is ‘worse’ unless you are perhaps comparing only life span where ultimately there might be a chance of cancer treatment to be free of that illness compared to a genetic condition with no cure.

Long life shouldn’t be the ‘goal’ – quality must count for something – yet so many charities focus purely on finding the golden ‘cure’.  I wonder, if in 10-15 years time, when Harrison might be thinking of perhaps going to University, living in his own home, dating, getting his first job … will they regret campaigning so hard for a cure that still hasn’t been found and not looking to support him in his adult life choices as well?

  • Misleading?

The charity was saying things like “no treatment, no cure, 100% fatal … certainty of a very short life, no drugs help”.

Life is 100% fatal so there is no meaning in the word other than to draw the reader to register ‘fatal’ as ‘really deadly, act now’.

Let’s look at the statement that says there is no treatment. There are physical therapies, surgeries and some medications like steroids that are beneficial and prolong life. Yes there is no ‘cure’ but there is no certainty of  short life … like I said, I know many people who are 40 + years old and still alive.

If life was so bad, how is it that people I know with Duchenne are Drs, artists, musicians, photographers, authors, web designers, managers …. not bad for a 100% fatal disease? Yes, I have friends who have died in their 20’s and 30’s but not before they gave life a great shot, some were married, a few had children, just average everyday people living life. Let their lives be the hope we look towards.

  • Hope in adults living with Duchenne

I feel charities like this can be misleading in the picture they paint of living with the condition. I also feel for Harrison, growing up in a world of ‘doom’ being at the centre of a charity which speaks little of the positive life you might have with a rare disease.  I hope as he grows older he can meet with young men and women who will inspire him to look beyond these strong words and live in the hope of the great things that are possible. I hope other children with Dystrophy don’t see these campaigns and live in fear of death before their parents have had the opportunity to talk with them about their future in a balanced way.

  • Campaign success

However, the campaign did what was intended and donations went up 300%. Effective yes, but it came with a price – the cost of disregarding the social consequences concerning how reactions to the advert might affect children and adults with dystrophy and other impairments.

And the campaign about animal charities getting more money than a ‘dying child’? 

Did they really need the excuse of ‘let’s see if animal charities would get more funding’ to run this shocking campaign? Surely, it’s common knowledge that charities representing specific types of rare diseases are not going to get nearly as much funding as those for animals (or even human charities for say cancer research)?

  • Charity giving has a hierarchy too – and animals generally trump humans with rare conditions.

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Yes, people care about animals, chances are, most homes have a cat, dog  … large numbers of people can relate perhaps to a distressed animal because they have them themselves.

People who don’t have children with dystrophy or a disabled child, can not relate as easily if at all.

People donate to charities which personally touch them or they feel drawn to …. whether it’s saving children, donkeys, rain forests, snow leopards … that is just the way human beings are.  You can imagine your £5 buying a pet toy or dog food …. but sending £5 to a charity that funds research is hard to visualise exactly what you are paying for. E.g it feels psychologically better to know you have paid for one meal for a dog or even one vaccination for a child in Africa  … compared to contributing to a small part of the hourly wage of a research scientist.  Many people give to feel better and giving to research looking at a single medical condition like Duchenne (or even a single genetic type of Duchenne) is simply not as gratifying as ‘buying a vaccine’ that will definitely save an African child’s life.

  • The dangers of focusing only on research

It’s also a sad fact that people will choose to ‘save a child’ over ‘save an adult’ with the same condition. Only one charity I am aware of supports adults specifically with Duchenne (and is run by people with Duchenne) – a forgotten generation because people were so sure they would die before adulthood or a cure would have been found by now.

Does that mean that charities should pull out the pity slogans, be dishonest or use shock tactics to get your money? Do we like to feel duped? No we don’t.  I think charities should be responsible in how they portray dystrophy or any other condition they are using money for – and engage with the public in a decent and honest way.

I would not like to ‘take a cure’ if it was funded through lies, manipulation and campaigns which were socially and morally questionable – but maybe others are ok with it?

 

 

 

 

Disability, Torture and Human Rights

Today is Human Rights Day and this year’s slogan, Human Rights 365, “encompasses the idea that every day is Human Rights Day’.  These are principles of equality, fairness, dignity and respect which human beings aspire to – and which nations sign up to in the various Declarations.

I love Article One

  • All human beings are born free and equal in dignity and rights.

and Article Five ‘

  • No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

However, according to this article some of the methods of torture include things that some disable people experience:

1. Denying access to the toilet so that people who had their movement restricted were forced to urinate and defecate over themselves was described as a degrading element of torture.

But it’s ok for an immobile person to lay unable to move in a urine soaked bed or chair because they don’t have access to care or equipment?

2. Being restrained in painful positions for long periods or being forced into ‘unnatural positions for extended periods’ is a method of torture.

Having to sit in a wheelchair, because of a severe impairment,  (or lay in a bed) that forces your back or limbs out at the wrong angle to cause nerve pain, pressure sores, dislocations etc is torture – yet people are in these positions for what could be years, with no pain relief, waiting for appropriate support/equipment/assessments. You may never experience a life without pain if you live in a country that doesn’t provide equipment. A pain where the only relief is death.

When your body is already twisted and contracted and placed in a position where you are not supported – the weight of your   body pulling against other body parts that refuse to stretch from their contracted state is like being on a rack. The agony is indescribable.

3. Sleep deprivation is defined as a method of torture.

Poor pain relief, pressure relief and postural support for disabled people can cause extreme sleep deprivation that brings on cognitive problems, hallucinations, memory loss, communication loss and many problems. Carers who might only get a few hours sleep experience sleep deprivation – night after night, month after month – yet this torture is ignored.

Where are our rights?

So spare a thought for the elderly neighbour, disabled friend, the person being the closed curtains who can’t leave their home …. because torture isn’t just the experience of terrorists or prisoners … it’s happening in our streets, in the UK, every day of the year and it’s not going to stop until it’s recognised.

Marlowe Theatre in Kent fails wheelchair users

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A few weeks ago I tried to get tickets for a show at the Marlowe Theatre in Canterbury (I’m Sorry I Haven’t a Clue) with my husband. It was going to be a quick sell out so my Personal Assistant called on the advertised booking line as soon as they went on sale at 9 am.

After 20 minute she got through to an answer machine message saying due to expected high demand people must book using the online booking system.

However, here is the problem – wheelchair users can not book a space on-line which the theatre later confirmed. Also, it appears that the ‘carer and family seats’ next to the wheelchair spaces can be booked by anyone on-line – even if that person could have sat in another available seat.

We were both really angry that this show (rarely visiting Kent) was not open to wheelchair users on the advertised booking number.

It is  unlawful discrimination to offer such an unfair ticket booking system. Whilst they offer an ‘access mailing list service’ for priority booking, nowhere do they say you have to sign up to this just to be able to book a seat (and that this was the only way to get them at sell out shows). Also, how would this be handled – would all wheelchair users get a fair chance?

Anyone else with an impairment such as vision loss may also have found it impossible to use the online method of ‘picking a seat’ from a visual theatre seat plan. If the box office can’t handle sellout shows and opens them only to non-disabled internet users – then this is incredibly unfair.

I tried to use their web site to contact them about this … but it actually took me about 15 attempts because the form didn’t work – clicking in the next box deleted he previous box!! They really are useless.

Note to self – spend your money where your custome is appreciated.

We have been to other venues who have wonderful access and a separate booking line for wheelchair users or people who might be unable to use on-line systems  – so these spaces can be booked fairly, at the same time, on a first come first served basis. I am disappointed and frustrated that the Marlowe Theatre makes it so difficult to book tickets without being on a ‘special’ list and then having to unsubscribe from future mailings if you only go there once in a blue moon.

Well Marlowe – I’m Sorry YOU didn’t Have a Clue.

No room at the Inn – well no bed to be precise.

About 9 months ago the dates for the Firework Championships were announced – so we quickly booked into the Holiday Inn, Plymouth. I’ve written a separate blog post on our holiday.

We had chosen the Holiday Inn based on personal and practical requirements. The location meant we could walk to see the fireworks, it had parking and was one of the few places to have air con (as I need to keep the air cool because of my ventilator mask which otherwise gets really hot and uncomfortable)

At the time of booking the only wheelchair accessible room available was one with a double bed.

Out of 211 rooms there are only 2 with wide doors etc and a larger bathroom for wheelchair users which is rather poor. The chances of getting a twin room in hotels with so few rooms are slim.

 

We made the wrong assumption

 

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When we have stayed at other similar places (Premier Inn, Travel Lodge and even other Holiday Inns etc) where we can only get a double bed, we have been offered a camp / folding bed or sofa bed.

I have to take my pressure relief mattresses, turning equipment that goes under the mattress etc and I use a ventilator – so sleeping in a double bed with my husband isn’t an option. However, he has to be next to me to make sure I’m ok and to help me during the night.

Just before we went I spoke to them on the phone to ask for the folding bed and was told they had a policy not to provide these. Also, if we wanted second room for a carer (which wasn’t adjoining through an internal door, so wouldn’t have been any good for us anyway) we’d have to pay for it.

 

 

Making it possible to stay for work or leisure

Hotels have to make ‘reasonable’ adjustment, under UK  equality law,  to enable disabled guests to use their services – including providing aids and equipment. I’m assuming this is why the portable bed is often provided for carers in other places.

Another example is that if a person can not use the bath they can request a bath lift at one of the major hotel chains. Another chain offers low beds that can be raised on blocks to suit different height requirements.  It can make the difference between going or not going on holiday.

Also, it’s not only holidays that are the problem,  I’ve been to many hotels in the past for business trips, attending conferences or running training events for my company – and it really made working life difficult.

Basically, affordable, portable equipment that can help a range of guests have a much better stay are one of the things they can do for customers.

An apology

Holiday Inn isn’t cheap, we didn’t want to pay double and we needed and wanted to sleep near each other. My husband didn’t want to sleep on the floor – so on principle we felt unwanted and cancelled – moving to the Future Inn.

Since then, we have had an apology from Holiday Inn after I made a complaint. The manager was very polite and wrote in detail about the facilities they do have and the training provided for staff. He also explained that they do have a policy of offering a free room for carers and will consider a portable bed.  I hope this is a real genuine consideration.

I would like them to understand that things like a portable bed would have made all the difference and is better than the other option of us taking a camp bed or my husband sleeping on the floor.

I suspect many other people are in the same boat as us (from what my friends have been saying) and I know some wheelchair users who sleep in their chairs because of the ‘bed’ problem. It’s hard finding accommodation when most hotels only make 1% of their rooms wheelchair accessible.

Access for people with mobility impairments is more than wide doors and a few grab rails – its also about giving accurate information so that people can decided where they want to spend there money. We need a higher proportion of accessible rooms to choose from – that have been designed in a way that will benefit a wider proportion of disabled guests – not just mobile wheelchair users who don’t need assistance.

 

Our trip to Plymouth for the British Firework Championships 2014

Fireworks

About 9 months ago the dates for the two nights of fireworks were released – so we quickly booked the two of us into a hotel in Plymouth. I’ve done a separate blog on why we had to cancel our original booking with Holiday Inn.

Anyway, to cut a long story short, Kevin would have had to sleep on the floor as they didn’t have a temporary camp/sofa bed in the room like other places we have stayed – so we booked a room at the Future Inn.

Back to the Future?

Not quite – we won’t be going back to the Future Inn – for one reason which is particular to people like me who need a pressure relief mattress. You see, the Inn was lovely, staff were nice, we had two double beds, easy parking and a wet room / shower – yet once we had put my mattress on the bed it was too high to get on!

Incidentally, you couldn’t use a hoist neither as the bed plinth was wooden down to the carpet. Also, there was so much furniture in the room I couldn’t get to the bed without scraping my power chair along the bed on one side and the fixed table on the other. There was little room to turn – you went in forward and generally came out backwards.

So for our requirements we really struggled with Kevin having to lift me on the bed and then from the bed onto my mattress.  We rarely have this problem as in other places the beds have been lower – with the option to raise them on blocks in some places. This suits everyone – but this Inn have yet to understand the true meaning of ‘access for all’ or at least ‘most’!

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Top left – This is Sibel, my portable hair washing basin we take in case I can’t reach the sink or I’m too tired to shower. Top right – my new modified shower chair/toilet chair. Bottom left – the crazy small gap to get through to get to the side of the bed. Bottom right – the nice bed we destroyed to put my mattress and things on for me to use it.

On the plus side, we got to see how our modified toilet chair worked in practice and I was able to have a shower for the first time in about 5 years which was rather nice considering I only ever have a sink wash.

Fireworks Night 1

So no fireworks in the bedroom aside deep frustration …. but loads of them out on the Hoe. The first night we drove to the Park and Ride a few minutes up the road. We were dropped off in the town and walked nearly a mile, with the rest of the Pyro maniacs, onto the Hoe for the giant showdown.

There were thousands of people as we expected, a fun fair and the usual array of chip and donut vans. However, we didn’t anticipate on the fireworks being set off far below us on the water (we were basically on a cliff). Even at their highest they weren’t visible overhead- so you needed a clear line of sight to the sea.

Their were 3 displays each night. However, once the tall fat lady stood in front of me I couldn’t even see the sky! I stared at her rounded behind and saw nothing of the first set, about 40% of the second set leaning out the side of my chair around her chubby thighs and about 90% of the third set.

All in all, not so successful. We drove hundreds of miles to see a fat lady’s bum …. not what I had imagined! Incredibly frustrating.  Kevin took a video so I watched that instead.

Tomorrow we would try plan B – arrive hours early and pick a different viewing point.

On the up side, we stood next to a Chinese guy with a mental health problem who was muttering all sorts of random sentences for the duration, whilst doing throat singing and waving his arms in pure delight at the pops and bangs. He was having so much fun oohing and ahhhing in-between the mutterings that we were sucked up into the bubble of pure joy that was emanating from him. That was more magic than the fireworks.

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turtle

 

Earlier on in the day we went to the aquarium to get a fish fix – that was really good and they had good food. You can’t go wrong watching a turtle or jellyfish.  As is customary I took 200 blurry blue photos of fish and videoed the jellies.

It was nearly 2.30 by the time we got to bed, the queue to the park and ride was longer than anything you’ve ever seen at Disney.  So, we got in and the night ended with hubs throwing me onto the bed, quite literally.  ZZZzzzzz

Fireworks Night 2

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After a day on the South Devon Railway (great access, friendly staff and a lovely journey), we put into action Plan B. We parked at the aquarium around 6pm to get a place in the multi-storey, went for dinner, then ambled round to the front of the aquarium where we had a great view of the fireworks. Away from the funfair, the crowds were less dense and more civilised! It was nice and quiet with the gentle hum of people wondering if it was ever going to start after a 30 minute technical glitch. There were 3 sets on night two – each company got the usual 10 minutes to show off what they could do.

harbour

I was sat next to a small child by the harbour railing. She was about six years old and stood as close as she could to my side and just stared silently and intensely at me for a whole 10 minutes during set 2 . Alas I was trying to watch the fireworks so there wasn’t the time for conversation. The thing was, I could feel her breathing down my neck and as I turned my head to see what she was doing we met virtually nose to nose. She still had a perplexed look on her face, clinging like a limpet to my armrest which started me laughing. I give her top marks for her endurance and finding me more amazing than the fireworks she was missing. Maybe she was a robot child or something – who knows.

So it was another late night and after more mountaineering we made it into bed.

Day 3

Going home day. A nice late checkout, we went home via a slight detour for Kevin to do some bridge spotting. Now, what he didn’t tell me was to get to the bottom of the Tamar bridge, at Saltash, to take a photo, involved the steepest road you’ve ever seen in your life – the sort you would normally go down on foot attached to a rope and harness. How anyone can live on that hill is beyond me.  This little escapade also meant driving over the bridge twice – with only a little barrier on the way back to stop you plummeting to your death. Lovely.

 

 

 

 

 

Easter Sunday at Bredgar and Wormshill Light Railway

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Easter Sunday was a misty, rainy, damp day and the drive up to Bredgar and Wormshill Light Railway in Kent was like a scene out of Jurassic Park. Up a hill, mist rolling around the distant tree tops, drizzly … then past fields of long grass. However, not a single raptor did I spot so we found the railway and parked up in the designated field.

It’s only open on a few Sundays in the year – a private 2 foot gauge line on an estate that is definitely a big boy toy for enthusiasts. They built some stations, signal box, engine shed, workshop and a turntable to pootle down the line to a wood and back again.

Alas, no discounts this time – £10 for adults and £4 for our nephew. Not cheap really. The location is pleasant enough, with a toilet block, gift shop and cafe which told us the special was hot buttered toast for that day. Wow, I did manage to contain my excitement … and also my ‘here we go again’ face when someone in the cafe came to ask me how long did my batteries last.  I wondered how long his legs lasted on one charge but refrained from the intrusion of asking.

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Anyway, first up James headed towards the engine shed. The main signpost goes to the stepped entrance. Eventually I walked back to the field we had just come from to the (not signposted) level back entrance. By the time I went in James was ready to come out!

They had a beam engine, traction engines and a model railway display, play table with trains and some automobiles.

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Next up we went on the train – just down the line and back again. I could get on via a ramp to the middle of the carriage but not inside the totally covered bit.

The bluebells in the woods were nice, and if it had been a nice day, there was plenty of picnic benches in the wood.

By the end of the day, the weather was really closing in and I sheltered whilst James had his last train ride.

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All the facilities were pretty good – clean and they had an accessible toilet (although it’s not mentioned on their website – Kevin phoned to ask as they don’t mention access at all).

So that was Easter Sunday 2014.

 

 

Lego – can it get any better…. oh yes it wheely can!

Accessibility SetSource of Title picture: http://lego.cuusoo.com/ideas/view/19418 ]

Who hasn’t played with Lego and loved every minute of it? Whether your memories are rummaging through bags of bricks until your hands bled, stepping on a ‘1’ in your bare feet or watching mum or dad try and follow the instructions to build a castle or space ship. At some point we got the hang of it and began role playing some amazing adventures. In our minds, just a few bits put together was an amazing model – house, castle, car, dinosaur, spaceship – whatever you wanted.

Then of course the hundreds of sets to build, the introduction of motors and electric parts, Lego Technic, gears and computer controllers…. oh how it brings out the inner Geek in every child and adult!

It’s amazing stuff. I loved it, had loads of it and played with it for days on end. I built houses with secret passages using my favourite hinge piece, pirate coves, futuristic bubble houses from the space sets with the transparent blue shell panels connected by the fabulous monorail….. ahhh . Not a lot has changed – I still build these things in Sims3 worlds and still love designing and creating.

Across the internet, many adults are still building amazing things with Lego.

Lego used to be a universal thing. Recently, of course it has feminists spitting because of the (quite frankly) ridiculous introduction of sets for boys and sets for girls.  The whole point of Lego was that is was genderless and appealing to everyone – you made it into whatever took your fancy in whatever colour you wanted. It was for everyone, equally – or was it?

Playing differently

I was still playing Lego when I couldn’t walk very well and used a wheelchair, back in the 1980-90’s. Becoming more impaired changed the way I played and related to the bricks and parts.  I could still use my hands and put the bricks together… but what I made was quite different in many ways.

I liked to build Lego towns. Some houses had stairs – but the one my Lego girl lived in had a through floor lift – just like my real house. I made a lift with a lift shaft and attached the castle drawbridge ‘winder’ piece at the top so I could winch my person up to the upper floors. My lift often got stuck so I kept a can of WD40 on my lego table to oil it up all the time. It made for messy play.

My poor Lego girl had to walk everywhere – like me she got tired but there were no Lego wheelchairs. I could build accessible houses and things but I never made a good wheelchair. My girl kind of hopped everywhere or floated. The nearest thing they had to an accessible car was the Lego ambulance and stretcher.  I wondered, now, with the advancement of wheelchair technology and accessible design (and of course with disabled people being cool since we showed considerable talent at the Paralympics) – whether disabled people had made it in Lego towns today?

What would I build if I was a disabled child now? What would I build as a wheelchair using adult?  For sure, I would love to build things that I have in real life – ramps, mobility equipment, accessible transport – I’d love to roll play as ‘me’ complete with wheelchair and have the same exciting adventures. I know that none disabled children have asked to have disabled lego people to represent their friends.  I think that is wonderful.

Hurrah for the Internet.

Well, it turns out that Lego hasn’t quite caught on … but hope is on the horizon. They do have a way where the public can design new sets and they will be considered if enough people are interested (and would buy them of course).

I love the fact that this person (inspired by having a friend with MD 🙂  ) is asking people to vote for their accessible set which included a ramp, ‘electronic’  doors, a power chair and a disabled parking sign. Whoop. I would have liked this set a lot.

You can see it here and vote for it (please do).

http://lego.cuusoo.com/ideas/view/19418

Other great Lego wheelchairs.

You can surf the net and go on YouTube and find lots of instruction on how to build lego wheelchairs – Louise Dade being a great designer … this is one of her chair designs – based on racing chairs.

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[Source: http://www.flickr.com/photos/bladewood/7893937332/ %5D

Some of these Lego chairs would be great if brought to life !!

Back in 2009 she started this competition ‘Pimp my wheelchair’ and you can see some of the great designs people sent in from the source below. Now I wish these lego chairs were real – they are brilliant.

Pimpmychair

[Source:  http://www.reasonablyclever.com/lego/contest/chair/index.html ]

of course, you may have seen this … a real ‘wheel’ chair made from Lego.

 

and who could forget the 2007 Lego model of Stephen Hawking that went viral across the net and was even sold as an unofficial kit on Amazon for while.

SO… 

It would seem that wheelchair users are alive and kicking (or not I guess if you have lower limb paralysis) and living in Lego towns the world over.

‘Sort it Out’ – another great board game.

Sort_it.jpgAlways on the hunt for a bargain, I came across this board game for only £10 on Amazon. Considering most board games are in the £20-40 price band, I took a punt and in the basket it went.

It’s one of our most played games at the moment and we have the Australian designers to thank for this one, apparently.

Game play

It took a while to sort through the instructions but essentially it is quite straight forward. You have a huge pile of cards and everybody plays at the same time with one card  – so, as you wade through the pack it will either last you many games or you might be still playing 2 hrs later if you are a bit thick/unlucky! If this happens, you may lose the will to live or need to make sure invited players bring a sleeping bag.

Each turn….

On each turn, a card is chosen, read out, placed where it can be seen/read by all players, and then everybody knuckles down to quickly place 5 items in order before the timer runs out.

So for example, the card might say “Place these animals in order according to the length of their tail” > shortest to the longest.  The list could be ‘Giraffe, Opossum, Kangaroo, Manx Long Horn Sheep, Emperor Bird of Paradise’.

Each item in the list is written inside a coloured block and players have 5 counters of the same colour so they can arrange them in their chosen order.

Once the time is up – you turn the card over and it tells you which order they were (and in this case, the actual length of the animals’ tails) – do your colours match up?

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Sometimes you might think you know the order of 4 of the items – but where you place the unknown one could throw all the others out of place – resulting in none being right! In that sense it’s a bit of a game of luck as well as knowledge.

Part of the fun is  seeing what other people put – and their logic behind it.

There are a good range of topics about all sorts of things, science, inventions, events, history, technology, maths, literature, films, tv, sport – but often with a twist. So for example you might know roughly which years a list of famous movies came out – but can you place them in order according to when the first sequel came out!  So a good blend of easy/straightforward to ‘never heard of any of them’, ‘can’t get my head around this’, questions.  If it looks impossible – we just put it back in the box – there are plenty spare!

Scoring

Oh yes, this is a board game so scoring does come into it. There is no dice – just a board and counter for each player.

You move towards the finish according to how many you got right. On the board are numbers – which tell you how many you move forward for each one you get right. So if you are lucky to be on a number two – you move two places forward for each one you get right.

The snag comes near the end of the board – which is where the game can be a bit long. Here it might say move forward 1 square for every correct answer, but also move 2 backwards for every wrong answer on that go.  Luckily, if you get all 5 in the wrong order, and end up going 10 places backwards, you might reach a safe zone, and not have to go back any further.

Accessibility and adapting the game for players with impairments.

It’s a game anyone can play as long as they are reasonably knowledgable about the world with a suggested age of 12+. I think some cards are suitable for younger children and you could even make up extra cards in terms of language and complexity to make it more accessible for people with learning difficulties.

The print is fairly small – I would say about 12-14 font size, but often in bold.

You will need to be able to put things in order from a list of 5 items (and be able to read the five things in the list).

Each round could be easily adapted for people using keyboards to note their answers or needing to copy the list into braille on the go/ write out in larger print. It would be easy to use an iPhone/iPad or similar to take a quick picture of the card so you have it on your own screen for easy reading and magnifying –  and can then even write on it with a drawing app if that makes it easier to show how you ordered it.

As it stands, you would need to be able to view the card (which is actually hard enough for two players never mind 6).

The game comes with 5 coloured counters to slot into a rack for the ordering process – they go in quite smoothly but are only about 1.5cm square and hard to pick up if you lack finger dexterity. I don’t use the rack and just lay them out on the table.

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You also need to be able to differentiate between the 5 colours (yellow, pink, orange, blue and green). Unlike Ticket To Ride, there are no symbols to help people with colour blindness of any type.

Some of the questions order things like units of measurement and event dates which might be difficult for some people. However, there is a good mix and plenty of cards to be able to leave out any which people find confusing or just too difficult.

Scoring might take some getting used to because of using multipliers and moving both back and forwards.  You could easily just make your own scoring rule of moving one place forward for each one you get correct.

The game is good in that everyone plays at the same time – no waiting for a turn which can often be difficult when keeping attention. On the negative side, your brain doesn’t get a rest!

New choice in Halloween costumes…

This week, certain types of Halloween costumes were withdrawn from sale at two British Supermarkets.

So what other choices are there?

There are already an abundance of costumes that won’t be taken off the shelves that depict disabled people as ‘freaks’ or worthy of the ability to scare people this Halloween.

Quasimodo

For £3.98 you can get your child a Quasimodo face patch for an instant facial disfigurement. Teaching your child that people with disfigurements are freaks and scary monsters will be a valuable lesson? Deforming our bodies is an instant way to boost the scare factor – and film makers rely on maintaining this fear.

HunchbackBy the way – have you noticed that most villains in movies are, more often than not, depicted with an impairment of some sort… so you might want to choose something like a Pirate with a hook on his amputated limb or a wooden leg?

Hook

Would the pirate be so brave or even scary without a hook prosthesis? The next time you watch Peter Pan …. look at how the hook and shadow of the hook generate fear and negative emotions along with the sinister music.

Some amputees have had (or still have) hook type limb attachments …. maybe children think they are all pirates? Well either that or some sort of Paralympian perhaps?

Witch

Another classic option is the Witch. Usually haggard or deformed and in cahoots with the Devil. In the 14th century, babies born with deformities were drowned because deformity linked them to the devil. Disabled children were branded witches according to the book Malleus Maleficarum (Witchcraft catalogue from that century). The famous Protestant Reformer, Martin Luther (1485-1546) saw the Devil in disabled children and recommended killing them.

We no longer associate witches with being devilish disabled people in disguise – so maybe that makes this costume the less stigmatising option? The least likely to cause harm by perpetuating negative, stereotypes? Then again I don’t think this accurately reflects modern Wiccans, Witches and Pagans neither.
Here are some other disabled people depicted as sinister or evil (who might turn up to a Halloween party).

  • Disabled characters ‘Black Dog’ and ‘Blind Pew’ from Treasure Island. (They lacked fingers, eyes and were hunched)
  • Long John Silver – another amputee who, as his evil character becomes more apparent, so increased the deliberate references to his wooden leg.
  • Dy Jekyll and Mr Hyde (turns into a ‘bad’ personality drawing on being hunched, ugly and mad’)
  • Pick a James Bond Villain (an array of disabled people – all sinister). Something for everyone here.
  • The evil person in Twin Peaks – was a dwarf.
  • Frankenstein – the film adaptation utilised ‘Fritz’ who was a hunchback to assist the Baron. He was responsible for finishing the monster by adding the brain (which he drops as hunchbacks are clumsy idiots, no?) and urging it on a rampage of murder.

Don’t be left out.

Are you feeling that Halloween just won’t be the same now you can’t dress your children up as a mental patient (because obviously all people with mental ill-health are freaky, scary, axe wielding murderers NOT)? Sad you can’t go to Tesco and buy the Psycho Ward costume…. then fear not.

I always like to help out on issues around disability.

Here are some ideas to really get those creativity juices flowing … and just like the above, they might be equally effective at increasing the stigma, stereotyping and harrassment of disabled people this Halloween season….. so don’t be afraid, be really insensitive (stupid) and give them a go!

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