Journey: Hook of Holland to Harwich via Stena Lines - Hollandica Superferry

This ferry was launched in April this year and will join another Superferry in Autumn. These cost £375 million pounds. Shame they didn't spend much on thinking about the overall experience for disabled people. Granted the ship had some nice touches but compared to our first crossing, the staff support was very poor.




Cabins.

Again, we pre booked a cabin with wheelchair access. We had our tickets printed at the car booth which they told us also acts as your room key. This was the same as our first journey.

On locating the cabin (which had us wandering the isles of cabins to work out the number system) we found the door had a small low touch pad with a slot to insert the room key card. It also had a normal handle on the door. I believe the door was supposed to open automatically. I say supposed, because it didn't work.

My husband tried several times and the light flashed but nothing opened. Eventually a member of staff said we had to have a normal key to put in the door. What use is that! The automated door was not working and when we got in we could see why - the opening door arm was not fitted but the electronics were there.

On entering you can see the cabin above (the lighting made the picture a bit orange). The bathroom featured a level entry (roll in) shower area with seat and lots of grab rails. The toilet had two grab rails either side and room to side transfer to one side. I'm not that fat but due to scoliosis, lean to the right side. When the grab rails come down they basically wedged me onto the toilet and are closer than what you would find in your average UK accessible toilet. The floor surface is very soft, with good grip but like the previous ferry, the sink is not suitable for hair washing and difficult to reach for me personally.

The bathroom is rather nice but the flat push panel to open the bathroom automatic door is situated above the side unit of the bed on the left of the cabin. So if you have to sleep on the right bed (which I do because of my spine) you can't press the button from bed. However, if you are a wheelchair user, how someone could sit on the bed, press the button, transfer into their chair and then get through the door before it closed again in about 10 seconds is beyond me anyway! The bathroom door swings back and because it is wide, there is only a few set places your wheelchair can go or it hits you and closes again. If you are standing in the way of the door the force would knock you off your feet - my wheelchair would rock with the force and it's a weighty machine. The location of the switch hasn't really been thought through in the overall design I felt and the close mechanism is rather violent (but possibly needed to close a large heavy door).

The cabins were nice though putting these problems to the side even if they did vibrate something chronic.

Customer service.

I was a bit miffed that the free wifi was only for 3 hours and the 'reception all over the boat' meant one bar if you're lucky. We also got an incredibly poor service when purchasing food as what we wanted from the menu wasn't actually available and my husband ended up with a microwave meal and I ended up with a chicken burger that makes McDonalds look like a 5 star restaurant. The guy who 'cooked' our meal was more interested in the football on the plasma tv installed in the food court than customer service. We had no offer of help to carry the tray and no 'quiet area' as in my previous blog. Too much money spent on umpteen plasma screen tvs and bars than on customer care I think.

Tags:Netherlands | holland | disabled | holiday | disability | wheelchair | access | ferry | harwich

Journey: Harwich to Hook of Holland + Overnight stay at Premier Inn

Premier Inn is situated at the port next to Lidle and adjoining a Brewers Fayre. One night cost £61 at the time we booked in January. We had to stay overnight because it meant getting to the ferry 45 mins before we sailed at about 9 am. Much less than 8 hours sleep and my body falls apart. We had a roll in shower, plenty of space and the sink was at a good height to wash my hair in. Lacking in personality like all of these sorts of rooms - it did the job for the night and we were relatively comfy with little noise outside.

Stena Line - to Hook of Holland on board Britannica (older ferry).

This slightly older ship was refurbished in 2007 and was fantastic.

We selected a disabled cabin for one person as a space to chill out and appeared to be the only wheelchair user on the boat getting a large disabled cabin with tables for 1-2 disabled people.
You can see a 360 of that cabin (with roll in shower) on their web-site here.


The only difficulty was the sink is quite high and basin is inset a way from the edge as opposed to the usual type of sinks in say a Premier Inn. It was airy, clean and the beds were firm with a soft mattress topper which even I found comfy having scoliosis.



On board we had free wifi for the duration available on the decks which suited me and my iPhone!

Top Class Service

We were met just outside the lifts by a steward who said they had a reserved area for wheelchair users on board away from the crowds of people and closely packed tables. So, just to the side of everyone else were 3 tables by a window, with a rope barrier and larger access space clearly signed 'reserved for our wheelchair accessible guests' which made me giggle as perhaps the intention got lost in translation now everything was Dutch/English bilingual. Either way, our steward said just to ask if anyone took our spot and he would 'hoof them out'. Sounds good. Not a single person or child tripped over us in our lovely corner and it was away from the hustle and bustle which was lovely. Some people might see it as segregation but there are times and situations you really need your own spot - not just wheelchair users but other people with impairments too. Our steward watched out spot as we went to get some lunch, went to get our cutlery whist my husband carried the tray and basically got us anything we needed. We felt like royalty,

Our meal was lovely and the journey didn't last long at all. Right from pulling up in the car, to boarding near the lift through our journey and off the other side it was very good. The ship was clean and tidy and not many people onboard in general. 10/10.

Tags:Netherlands | holland | disabled | holiday | disability | wheelchair | access | ferry | Premier Inn | harwich

So, medical reassessment for all in 2013?

If by existing claimant they also mean people like me with progressive impairments / life limited then what a waste of money.

I remember my first two medicals when I could walk a few steps. It was tearful and stressful - like most of these things seem to be.

The first test was scheduled in a GP surgery (considering most GPs had never heard of my condition and 20 years later still don't).

The test was up a flight of stairs.

Between my mum helping (pushing, pulling etc) and my wobbly legs, we made it. I was shattered and it took all my strength. It was also a dangerous thing to do because I could have collapsed and tumbled down at any point.

I got to the top, I remember a few questions about how far I could walk - 1 football pitch, half .... and they basically said if you can walk up a flight of steps you must be fine. Failed.

So I had to appeal. This time I went in my leg splints. I obviously did not look disabled enough. I also entered the surgery in my 'buggy' aka adult pram as they were in those days. Mum lifted me out in front of them and I sat on a chair. I can remember what it looked like, how it felt, the colour and feel of the cold wooden desk I clung onto so I didn't fall flat on my face before I sat on the chair. I can see it all now like a nightmare.

I was told to stand up by the doctor/assessor. I moved my legs a bit and said I couldn't. It was the truth.

He said I wasn't trying hard enough and shouted at me ... PUSH, try harder.

I wanted to cry. I held back the tears, they received a large pay cheque for drilling me.

I passed the test. I was awarded it for life eventually. I hope to God the next medical is not like that. A list of endless questions about what you can't do - just like every social care assessment and review is. Some things never change?

Tags:DLA | benefit | disability | disabled | budget

This follows on from my previous blog and contains my experience of a Twitter Party

Now - this is where Twitter comes into its own when you add a hashtag ( # followed by a word e.g. #equality) to the end of your message. If you go on Twitter, you can search for everyone in the world who has added the same hashtag to the end of their message and it will be displayed in a time-line. Hence people can see what others are saying on the same topic - and join the conversation.

The most used hashtag for my account is #mhlparty (over 430 Tweets) and it's my first experience at a Twitter Party I am going to share with you today - from a disabled person's perspective.

Accessible Parties.

I like the idea of parties - being around friends, having a laugh, good music and a bit of dancing. On the other hand I feel very uncomfortable in environments like these. For starters, crowded areas where everyone is standing up or dancing/falling over drunk is not my idea of fun. Perhaps because I can't stand up (use a wheelchair) and need some space to move, perhaps because people always used to fall over me as they wobbled to and from the bar. Maybe it was the drunken games of 'who dares chat the cripple up' or the fact that I could commit suicide on less than 1 Unit of Alcohol. Add to this the noise and the fact that my voice is sometimes little more than a whisper does not a conversation make.

All in all, I'm just not cut out to do the Party thing - even though the idea of loud music and waving a glow stick around all night has huge appeal!

Then I started tweeting whilst watching Most Haunted on the television, having a love of all things ghost like since the Ghostbusters first came out in my childhood. Prior to University I was so interested in the Paranormal because of personal experiences that I was originally going to do a Parapsychology degree. I guess you would say I'm a skeptic believer i.e. I believe in paranormal activity but don't believe every sound or bump in a spooky place is spirit activity. So, I take things like Most Haunted with a huge pinch of salt and a good dose of entertainment. Whether you believe or not, Most Haunted as a series has a huge fan base and I saw that some people who watched the show were Tweeting about a Most Haunted Live Party (mhlparty). I had to find out more - so I did and although the show brought us together we all agreed that it was our party and interactions with each other that made the night a fantastic one.

Left: My attempt at psychic art. This picture tweet was my prediction that paranormal findings related to WWII planes might feature (as they were at an old RAF base). Just as I thought - my prediction came true - must indeed be psychic!!

What is a Twitter Party?

Well for mhlparty, it was the idea of the lovely @JuicyJulesRocks and anyone who watches the show can join in. Each Tweet carries the hashtag so we can focus on just party tweets and we have a core group of about 12-20 people with the party theme being based on the show. We all seem to hold the same viewpoint - pretty darnn skeptical about the show but still loving it (and occasionally something does happen which makes us all go a bit quiet and reach for a pillow to hide behind!).

A party is held for every Live event - that's 3 hours of tweeting for 3-7 nights and can best be described as virtual role play. For example, someone will run a bar and make sure we are all well topped up if not getting a bit tipsy by the end of the night and others will let people know what music is playing (our favourite of course being on replay is usually Ghost Busters or for devillish investigations Road to Hell has been known to pop up on the old Jukebox). Not forgetting the party nibbles, lots of chocolate and I tend to supply glowsticks! We have a mhlparty website hoted by the lovely @MrRant and party games include competitions such as 'best costume' and the ever popular 'guess how many times they will swear on live TV'. In fact, our party has had a few mentions on air and we have had an official drop in who monitors the swearing from the broadcasting perspective and helps with the official 'count'.

If you have ever listened to Audio Description of a party scene on a TV programme - Tweets read a bit like that! Our own, virtual, interactive party world. Yes, people probably think we are all quite mad but essentially, we have a laugh and a chat, we've made some good friends and have a great night.

The best sort of party for me?

Yes, most definitely.

• To start with, I didn't have to phone up and check for wheelchair access or
• figure out inaccessible transport/parking.
• I didn't have to explain to anyone why I can't drink alcohol.
• I didn't need to feel 100% well to join in.
• I get a giggle because of my crazy party costume and not in a hurtful way because I've tried to cram my funny shaped body into party clothes.
• I have no fear of bullying or harrassement - or of being safe from some of the terrible disability hate crime of today.
• In all reality I am comfy and warm in my living room and not worrying about hot, claustrophobic environments.
• I can eat and drink what I want at a virtual party - unlike real life.
• I don't have to worry about trying to use a toilet that is inaccessible and wet underfoot with alcohol, vomit and urine - especially when I can only transfer in bare feet.
• I don't need to worry about getting home safely and
• best of all, I can communicate with people rather than words remaining as frustrated thoughts when I haven't the strength to get them out. Without communication, life can be lonely and it's easy for people to pre-judge me as anti-social.

Of course wheelchair users and people with all sorts of impairments go clubbing and enjoy the night life - but my choice is to stay in and party in an alternative way.

A sign of equality?

Nobody knows I have an impairment in most virtual parties - it's not relevant. I don't hide my impairment from anyone but I don't make a point of telling everyone I meet that I use a wheelchair unless it is relevant to the message or situation. I found it interesting that I could Tweet about every day life for months before people started asking if I used a wheelchair because otherwise a tweet didn't make sense! It's not everyday that someone can say they rolled down a hill when out for a walk. It's perhaps testimony to just how far equality has gone. I'm loving my virtual world - so drop in for a chat or a cup of tea anytime you wish :-)

* Dedicated to all the wonderful mhlparty goers.

Tags:disabled | access | socialising | twitter | Mhlparty | disablism | social networking | blogging against disablism day

Twitter - my new best friend.


Twitter has been a global phenomenon for a while now. Until last year I had no idea, what it was or why I was hearing about Tweets everywhere. I wasn't inspired to give it a go thinking it can't be much different to the Face Book Status concept. That was until one day around this time last year I became a little too curious - and now I need therapy, really I do!

Hello everyone. My name is @crip_tic and I'm a Twitter holic.

To find out how I enjoyed a party for the first time in my life using Twitter - continue to the next blog post!


Twitter v. Facebook Status.

Twitter is definitely my social network of choice where I have made real friends and work contacts. I do a lot of work from home and TweetDeck (my free Twitter mission control software for reading and sending Tweets) is on all day on my desktop and on my iPhone when I'm away from my desk. I am only Twitter free when I'm teaching or asleep.

My hundreds of 'friends' on Facebook are largely people who are 'used' for the sake of playing games rather than actually forming friendships and some of the posts are quite frankly annoying, self pitying or self indulgent congratulatory messages about how clever they are, how drunk they were or how much Jesus loves them. Either that or people share their misery in good old Country and Western style 'Dogs dead, divorce papers came through, teenage daughter is pregnant and worst of all the price of cider has gone up'. Much more of that and I'd have to add depression to my list of ailments.

Interestingly, I have some friends with bi-polar who refuse to get involved with Facebook so perhaps they had been tipped off beforehand!! On the other hand, some of the status messages do make me wonder if it's just one big peer support group FOR people with varying mental health problems and it could be argued that due to the therapeutic and supportive benefits of Facebook - perhaps it should be funded by the NHS?

What's Twitter all about and is it accessible to disabled people?

The moment I created my account and typed my first message into the 'what's happening' box I was hooked. Essentially that is the start and end of all that Tweeting is about - these tiny glimpses into life, lovingly known as Tweets. People share what they are doing, where they are, photographs, drawings, links, what they like/don't like, what they think or talk about a TV programme they are watching ... you get the idea.

The concept is amazingly simple. No annoying adverts, no games - just a list of Tweets. You tell the world what you're doing in less than 140 characters. Others will be doing the same in real-time rather like instant messages. If you follow people, you will see their Tweets appear in your time-line. Likewise, if they follow you, they will see your Tweets.

Accessible Twitter

Twitter, could be used by virtually anyone in conjunction with assistive technology that might be needed to use a computer/phone or learning support to master the basics.

People can Tweet in so many different ways and one of my favourites is by drawing pictures. It's not that I can't type or read, but more because I use a graphics tablet instead of a mouse and like to be more creative with communicating my message (and sometimes it's a lot funnier because I can't draw for toffee!) On my desktop I use Wacom Minis which is free tablet software for Wacom tablets. It allows you to run an application called Draw Tweet on either a Mac or PC. It's really easy to use and could suit someone who prefers to communicate for whatever reason by drawing with some basic pens and colours. My pictures are saved in TwitPic which is a free photograph and drawing website linked to my Twitter account.

Using photographs to share what you are doing is another none-text way of getting your message across and something I use quite a bit. Video is also an option allowing BSL users to tweet signed messages to each other. Visually impaired people (amongst millions of sighted people) might consider audio tweets as an option. For people who prefer text input, there is a website which makes tweets easier for visually impaired people and a range of desktop software and phone applications to try out. On TweetDeck for example you can alter the colours of text against the background which might be useful if you're dyslexic but doesn't allow for changes in font size within the application or a change in the font itself.



To find out more about how I enjoyed a party for the first time in my life using Twitter - continue to the next blog post!

Tags:disabled | access | socialising | twitter | disablism | social networking | blogging against disablism day

Today it was brought to my attention via Twitter that there was a review of a company who is selling an iPhone App to tell people with Alzheimers what apps they should use - 'for their health care needs'.

The company has a web site called Healthful Apps.

Basically, they are Apps that you pay for which list other 'useful Apps' and review them (with user reviews invited).

It's Medical Model in that their site appsforall.net tells carers about Apps so that they can improve the quality of life for those who they care about and for.

Now I appreciate that some people with Alzheimer's may not be able to choose Apps and most of the software is used as 'tools' by care works and therapeutic staff - so aiming the App at health and social care workers may be appropriate.

However, they also make Apps for other people and this is where I felt uneasy.

Apps become an act of charity

I am sure that most people on dialysis can choose for themselves which Apps they might find useful - but here you will find one 'for them' called 'Dialysis Apps. It promises to be a 'gift' for those in dialysis and expresses how dialysis is a gruelling experience. Clearly it plays on the tragedy and charity model where disabled people are portrayed as pityful, needy and dependent on the 'gifts' bestowed upon them by the caring none-disabled members of society.

I was not Appy to say the least

Not only is the language quite sickening and disempowering but I had to ask myself is this another sign of cashing in on impairment? Granted it's only a couple of dollars (some individual ones for the equivalent of 59p) but there are lot's of review sites where you can find reviews for free and chat about them on disability forums etc as many people indeed do. Let's not forget the actual Apple App Store review and search functions where quite a lot of disabled people post a review from their own perspective.

The Alzheimer's App talks about Apps to calm and lift the spirit and another on Apps that improve memory.

I have heard of many people using Apps in this way and reaping the benefits - what I dislike is that these just sound so commercial. They are devoid of social model thinking, user engagement/input, empowerment etc and are clearly aimed at giving carers control of Apps they think disabled people should be using.

It gets worse

The Autism App claims to be relevant for people with Down's Syndrome, MS and Traumatic Brain Injury - just to lump people together and maximise profits.

This is cashing in on impairment at it's worse.

Tags:gadgets | iPhone | apps | Daily living | disabled | disability equality

Genetic testing - eugenics in 2010?

Every so often, as a person with a neuromuscular disorder, I receive a magazine detailing genetic research, potential therapies and new ways to test if parents are likely to be carriers of the genetic makeup that could result in a child with that disorder.

Genetic tests are already offered to couples to detect their carrier status and allow for informed reproductive decisions. A new test is to be offered to couples (and possible over the internet) where a sample of saliva can be tested for over 100 inherited impairments - including those similar to me.

The Times, today, quotes it as a "genetic test that would virtually eliminate their chances of having a baby with ...". Let's look at that sentence again 'ELIMINATES'. It's a strong word.

Genetic testing already eliminates babies who would have been born with, for example, the same impairment as myself. The form of this elimination is unlikely to be abstinence and more like increased abortions or selecting none disabled children through IVF, both of which I disagree with. Whilst the tests may reveal a child with that genetic code - it can not tell you to what level their impairment will manifest and when, in most instances. For example, I have MD and some people stop walking when they are small children and others in their 70's where it has had little impact on their life.

One of the concerns I have with couples choosing not to have a child with an impairment is that this decision is likely to be made out of ignorance. The belief that disabled people live terrible lives is still held by so many people who have little or no experience of life as a disabled person. They read in newspapers how some disabled people have such a bad life that they want to end it - so why not just stop that life from starting in the first place or continuing upon conception? Society provides a somewhat gloomy picture to the uneducated which is simply not a true reflection of life as a disabled person in the UK - and not the sort of information couples should base a life/death decision on.

Studies have shown, however, that couples are often provided with only 'worse case scenarios' when information is sought from medical professionals. It is often unbalanced and pessimistic compared to that which might be offered by a national charity support group for example.

For some couples it's the need for the child to give them what they feel is every parent's right - the joy of seeing a child do well at school, graduate, form their own relationships, bring them grandchildren etc. Any child who might not fulfil this selfish desire is another reason not to have them. If you are going to have children - you want the full monty? Of course, disabled people don't necessarily deny anyone these things. Even if they did, should all children not be valued for who they are and not what we want them to become or what they can give us in return later in life? Should not the love of raising a family be unconditional?

Today @lisybabe tweeted an article where a Russian journalist breached professional ethics by promoting the killing of disabled newborns because, amongst other things, their life would be hell. However, not everyone is in disagreement with this journalist. He argued that it is no worse than an abortion. Indeed, in the UK, it is perfectly legal to kill a full term disabled baby through an abortion.

Congratulation on the birth of your baby

I leave you with this thought.

I random search of e-cards on the net brought up cards with the following insert messages:

• Ten Little Fingers, Ten Little Toes
• Bragging Rights
• A Purrr-fect baby

New parents proudly show and announce their 'perfect' babies to the world and people coo back affirming that perfect and 'bouncing' with 'ten fingers and ten toes' is worthy of congratulations. Are disabled children any less worthy of a joyous welcome into the world - or does it mark their initiation into the world of inequality? I suspect that if mothers were to be asked what did they mean by perfect - they are likely to indicate good health, not disabled or looking and behaving 'normally'. For me, it raises questions about the emphasis society puts on having none disabled children and what we define as 'perfection'. By definition, a child who is not perfect must be imperfect - a word so easily linked to less desirable, not as valued or deserving, dysfunctional or in some cultures shameful even.



The Times article on genetic testing ends with a consultant at Guy's and St. Thomas' Hospital, London, declaring the test as having an uncomfortable 'eugenic flavour' and I believe they are right.


An article I wrote in 2003 on Eugenics and disability.

Tags:disabled | eugenics | children | ethics | human rights

Door Hell - from 31st July to 7th July 2008

31 July 2006

Today the door fitters from JLC installed our new front door and side panel. It looks really nice and tomorrow they will automate it. Kent contract with JLC to do these so they are arriving tomorrow. Kevin had to take the day of work because I had a meeting at work. JLC only told us last Friday afternoon they were coming so it was rather short notice.

1 August 2006

Well, this guy arrives today and basically didn't have a clue what he was doing. He spent from early morning until the end of the working day trying to make out all was well followed by running out to his van and saying it was f**k*d up. He spent all day on the phone and reading the instruction manual.

We were having a system with a pin code panel on the outside so that my PAs can let themselves in, remote buttons for me to press to open it, and the mechanism itself. The door was pre installed with part of the mechanisms - the wrong part so the door would not lock. We had to revert to a key for the night and he said a new one would have to be put in. The window company JLC used, last night, parked a door (large door and glass) in our hallway for the engineer to pick up - only he knew nothing about it. He said he doesn't normally fit the type I was having installed and the whole thing is a mess. He is coming back on Thursday to put in the new parts.

3 August 2006

The same guy came back today armed with the new parts. He installed these but then the door was opening and the lock was activating in the open position... He said it basically is caused by the air pressure - in layman’s terms the arm mechanism that opens the door is not strong enough. Someone else will be in tomorrow to install the new arm mechanism and finish the job.

Aghhhh.

3 August 2006 - 6.30 pm

The electrician contracted from KCC arrived at 5.30 for a 15 minutes job that took an hour. He has now put in a spur (for connecting door to the mains).

Up until now we have had a mains extension leeds trailing across the hall way into the porch.

4 August 2006

Today the stronger arm was fitted by a second engineer. He showed me timing on the door like how long it could stay open etc for me to choose. At the end of the day he told me it was all fitted and working. Alas I believed him, signed his book and sent him on his merry way. Kevin later discovered:

• The unit is still plugged into an extension lead (trailing through the hall and acting as a trip hazard) even though the fused spur was fitted by the electrician on Thursday.
• The batteries inside the psu box are not connected hence we think we may not have emergency back up.
• There are two holes in our new door where the wrong opener was fitted.
• Part of the trim above the door has been cracked and where it has been cut to fit the second opener it has been
  mutilated rather than being cut neatly as it was with the first opener.
• The sealant around the door frame has been removed and not replaced.
• There are holes through the wall that have not been sealed.
• The switch to hold the door open is on the wrong side of the opener so you can't reach it when the door is open. It is also
  a key switch rather that a 'normal' type (the engineer could not get the other switch to work).
• We have been left a master remote for the locca unit but no instructions.
• The lid to the psu box is held closed with a wood screw rather than the proper one.

There are other things wrong which I havn't gone into any great detail about ...
7 August 2006

Today Kevin is calling them and they have received an e-mail about our complaint.... we shall see what happens

24 August 2006

On Monday JLC visited to look at the problem areas and apologised profusely. Rest assured someone would be back on Tuesday to fix all the problems. So Tuesday came and yes most of it was done... until the engineer saw that the wrong key pad had been fitted to open the door from the outside... Finally on Wednesday morning (causing me to be 30 minutes late for work when the job was supposed to be done) the engineer was back and fitted the key pad. Hurrah... it is now working.

JLC also sent a bouquet of flowers to say sorry!

28 August 2006

Guess what... strange bleeping noises were heard coming from the door... on investigation this was the signal for a low battery and sure enough the back up had failed and also the door would now not lock without a manual key... JLC are coming again next week to have a look.

1 September 2006

There was an unknown error and 'Dan' the man got the door locking and disarmed the beeping noise so that next week a new unit could be fitted.....

5 September 2006

JLC were back again this morning, replaced the unit and I now have new remote switches which are my equivalent of a door key I can keep on me. Nice chap and door now works.

By 4.15 the beeping noise was back..... changing the unit hadn't worked so something else is the problem... JLC are apologising yet again.... is this going to be another bouquet of flowers.....

14 April 2007

Well - they never turned up for their 6 months check to see if the Door is working - and by hec it's got a mind of it's own.

Sometimes it doesn't let you in, then it won't let you out, then it shuts quickly so you have to run out.... you name it - every day it throws up something wrong. The battery back up isn't working and .... well we will be writing to them soon....

26 April 2007

Well - we have fixed the 'kicking you out persona' that the door took on. All it took was a bit of elbow grease (well just the grease actually) along the opener mechanism at the top... yeahhh.

One down.....

1 May 2007

Spoke to soon - the oil has not fixed the problem and it's as cranky as ever.....

14 January 2008

Well, since my last post, I think they have been here at least 4 times to try and fix the door which is as wonky as ever. It is driving my husband mad. First of all someone came, had a look and said he would order a new part. Came again, part didn't work. Said they would change the whole unit - returned some weeks later with only a replacement logic board. The problem was even worse now.

One day they said they said they would arrive at 8.30 but didn't turn up until 4!

He said 'Oh dear, I don't know what's wrong it it ' and again said they would replace the unit. That was a few weeks ago. Then an e-mail to say the part had to come from Spain and could take another 3 weeks..... and so it continues.

JLC are useless - never get a door from them.

10 February 2008

Well, the part that should have taken 3 weeks to come hasn't arrived - several weeks later - still no date as to when our wonky door will be fixed... hmmmmm.

15 February 2008

Today JLC turned up to fit in a new controlled - you will remember this as the one from Spain due weeks ago. Well the new one didn't work, the whole day was a fiasco and at one point the door developed a seizure and opened and closed in short stutters for some time! Alarms were sounding and the locking mechanism didn't work. Eventually he said he got it going - tried it many times and it did lock - but he said he knew it didn't always and there was nothing he could due as it was due to 'the door seal' and that it wasn't meant to work on a PVC door. Why is it, I asked, that this door was part of a 'door and opening system' which was put in together? Of course he had no answer for that.

Anyway, by the time Kevin got home it didn't lock - so when the door closes someone has to push it the last inch so the automatic locks bolt in. Also, the door has lost the ability to stay open e.g. when bringing shopping in, which he said was working - yet it isn't a function of the new system!!!

So, Kevin has told them once again that this is just not good enough and we await for them to return with the purchase of a 'new programmer' to make the door push with a greater force and close on its own like it is supposed to. So.... that would be the programmer they brought with them on an earlier visit which they now say they have to order as they have never had one....

to be continued...

03 March 2008

Turned up again today and fitted a second box next to the first one. Why - to make up for what box one should do if it functioned correctly.

They were also supposed to use a programmed to tell the door to close with the correct amount of force to actually shut - He brought the wrong connecter... I guess they will be back and we will be onto part 17...

02 June 2008

Today we told JLC that the door doesn’t reliably close every time. When going out we still have to wait until the door closes to be sure that our house is secure. Kevin and I are very unhappy with the level of service we have received from JLC Automation Ltd.

We feel that we have given them every opportunity to rectify the problem. However, after eighteen visits from their engineers and nearly two years of worry and hassle we have decided that enough is enough. We feel that this shows their company is obviously incapable of providing us with a reliable door opening/closing system.
 
Because of this, we have been forced to look elsewhere for a system that will work reliably and close, and lock, the front door consistently and securely. We are shortly going to have their door opener and controls removed and replaced at considerable expense to ourselves.

Obviously we are very unhappy that we are being forced to do this, but we just want this saga of incompetence and poor workmanship to come to an end once and for all.   We will certainly not be recommending this company to other customers looking for such a system and are saddened that other disabled people and their families will have no other option if reliant on NHS/Social Care provision that contract with JLC.

07July 2008

Yahoo

This week marked a momentous occassions - the JLC parts for the automatic door were ripped out or modified by the new company.

What a difference. Polite and competent engineers, a door that works and several features my hubby is dancing around about in terms of functionality.

The end of an 18 part saga that started back in July 2006 we feel is finally over.

Tags:independent living | disability equality | access | Daily living | equipment | JLC door | | ocupational therapy | environmental controls | electric door | jlc | disabled | local authority | kent

Today I am moving some blog posts from a past blog, over onto IforI. Starting with this one from the Archives:

January 2006: Maidstone Hospital - no access


Today I received a phone call saying they wanted me to go for a Barium swallow on Thursday. Despite having changed my name twice at the clinics they still had me under my maiden name which confused the issue. I then said a 'by the way, I'm a wheelchair user', to which they replied 'ah, that could be a problem.' Does anyone actually read medical notes - its pretty obvious! Apparently the room where they are doing them is not accessible due to moving around of departments or something. The lady was very polite and said she would find out what they could do....

A later phone call that day.....

Now they had booked for me to have it in an accessible room..... I then enquired 'how do you plan on doing this'.... she said 'eh... why' to which I reminded her that I could not sit unaided out of my wheelchair (although she said they had a hoist to get me out of my chair) and also could not hold a cup to drink the barium 'meal' for scan of how I swallow! She said that could be a problem and would have to consult with someone higher up as to what to do and so as to not waste my time or theirs coming in until they had worked something out.

So there you go. It's easy for these medical types to say ' do a scan' but they never put any thought into the needs of patients with impairments.... 0/10 my friends.

Part two... January 26th, 8 weeks from seeing my GP.

So my appointment came through giving no indication of access so I had to phone them to check.
It took two laps of the car park to find parking and then an icy walk into the main building... brrrrrr.

FROM A to B

Anyway I walked from shall we say part 'A' of the building all the way to part 'B' at the opposite end of the hospital.

FROM B to A

On arrive at radiology in part 'B' I was told 'sorry' you need to go to CT as they are doing them up there today'...... so off I went with my PA. There were no signs and asking local wards where this quite critical part of the hospital imaging department is - they hadn't a clue.

Eventually I worked out is was in the cancer unit - back up at part 'A'. So off we went.....
On arrival at reception I was told 'sorry, yours is being done at radiology'.... grrr......

FROM A to B

Back we plodded along miles of corridors to the opposite end of the hospital again.... 2 miles later....

Eventually I had to transfer (for transfer read ' be dragged/slided') to three different places because of different height beds / tables etc.

Eventually I made it and got the thing done - with no great conclusion as to why or what to do about my problem... Still at least it wasn't anything cancerous or that would have topped the day of nicely!

FROM B to A

All that remained was to trek back to 'part A' to get in the car.... now where was CT again?

Tags:disabled | disability | hospital | Nhs | kent | treatment | access | disability equality

When is an accessible Premier Inn not an accessible Premier Inn?

Answer: When you phone and talk to staff at Poole North about accessible rooms.

I don’t normally question the accessibility of rooms in these types of places. However, having stayed at so many either for short breaks, work or visiting family, I know that no two are the same.

Sometimes it is a subtle difference or a difference that determines my personal level of access (like not needing to take so much disability equipment if I can transfer to the loo on one particular side).

Something made me query the sink (in which I would be washing hair and so on) as to whether it was built into a wall, built into a unit or was free standing to get underneath and up close from my wheelchair.

My husband called first and the person on the desk said they were built in... followed by ‘oh no, I don’t think so in the disabled rooms’. The moment the person gave me reason to doubt, prompted a second phone call the next day for a second opinion. This person also didn’t fill me with confidence.

Staff couldn’t provide a photo of the bathroom which would have cleared up the query once and for all so I had to enlist my brother, who was in that area this week, to visit and take a look himself (and take some photos). Of course, it was good of staff to let him do that but what would have been much easier is to see a picture of the rooms and layout. A cheap and easy solution that would have meant minimum inconvenience for all concerned and increased their standard of customer care.

Just having ‘accessible rooms’ is really not enough because different layouts pose different barriers for different people and a picture could really help resolve a customer’s query.

I believe photographs of accessible rooms, holiday cottages etc should be a minimum part of any disability standard because disabled people don’t always fit the ’accessibility standard’ box.

Tags:DDA | access | disabled | tourism | travel

Blogging about my experiences of health care has now moved onto this site.

I usually write about hospital fiascos and poor NHS health care - perhaps more appropriately they should come under the title ‘near death experiences’. I would like to say health care is really good - but sometimes the trials and tribulations to get that care are nothing to really laugh about.

So, here we go with the latest quest to answer an important question ‘Do I nearly die when I go to sleep?’.

Now, this is quite an important question as I am rather fond of living - and the fact that sleep is something one tends to do on a regular basis is a little concerning. According to my neurologist either now or in the future my attempts to breath whilst dreaming will decrease - and effectively my oxygen saturation will plummet to about 40%. Now, most of my consultants don’t remember I have a medical degree and I know that we used to declare patient’s a gonner at about that mark. So it’s a tad worrying.

The idea was simple - take home a pulse oximeter that will record my oxygen saturation levels over night. I would borrow a machine locally and that would be that.

Of course it’s never that simple. I then get a letter from the sleep clinic attached to my specialist in Oxford (this is over a 2 hour journey from my house). They say I need to pick up their machine and drop it off the next day. Two problems with this - it’s too far to travel and I was working the next day. The letter said the machine was in great demand.

Now I have to call them and explain that my consultant said I could borrow a more local machine. They tell me they are the only ones in the country with this particular device. Hmm, not convinced there are no portable O2 recording devices in the whole of the UK other than this one. I explained that I would have to book a hotel and rearrange the date. They offered my the choice of staying in the clinic but they didn’t seem to understand about my night time needs (I can only sleep on a particular mattress, with a whole bunch of pillows and a willing hubby to get up during the night and turn me). It would be much easier to take those items into a hotel rather than a hospital. Now this sleep study was becoming expensive - probably over £100 at this point. Anyway, I booked a date and left it at that.

The other night I get a phone call from the sleep clinic making sure I was coming in the next night. This wasn’t my original or new date! ‘Eh, what’s you name then”, went the conversation. So they had the wrong patient. I did manage to once again explain my situation and ask if anything could be done more locally. She kept telling me how great this machine was and that it would detect my night time movement and everything - I tried to explain I can’t actually move at night so most of the technology will be lost on me! This seemed to be news to her - obviously not read any of my notes! Again I am retold how great the movement detectors are.... hmmm, someone isn’t taking this in.

The lady was very helpful though and asked why we weren’t being sent the machine by courier to make it easier. I wasn’t told this was an option. Apparently the machine isn’t in demand and is available any time in the next few weeks!

I now await a phone call saying when the courier will arrive with my all singing dancing sleep machine - let’s hope I can actually go to sleep that night! Ahhh ZZZzzzzz

Tags:disabled | hospital | health

This App caught my eye today. Basically, you can locate not only a Tesco store but also use their database to tell you exactly where the product is.

PA potential?

Hmm, with the marvels of technology and loads of minutes to use up on my phone... what if I send my PA off to Tesco’s ‘Treasure Hunt’ style as my own personal shopper. I joke of course but there are times when this could work. I would like to be able to send my PA in to pick up something and be sure of getting the right thing - so showing her a picture could be quite useful. Someone I knew sent her PA into a shop to buy a fuse bar (chocolate bar) and her PA came back with a pack of electrical fuses! Needles to say her chocolate craving was far from satisfied.

How I wish I had this App when I was at Uni and trying to tell my none-English speaking volunteer PAs what I was looking for - a picture book wouldn’t have looked quite so cool!

I am sure this sort of technology could be quite useful if supermarkets offered free wifi or internet connections to aid shoppers.

Also, if the supermarket is crowded it can be harder for people who’s eye level is only 4 foot off the ground to see the signs. Clear labels like in a library (lower down) and to be able to look at your phone to tell you where to go would be great. In fact, I want full sat nav to find the shortest distance to travel around the store in order to complete my shopping list. I am sure supermarkets could make the experience easier for everyone.

Apparently it uses the same database of products from on-line ordering - and when we looked into this a while ago, half of what we have wasn’t showing up..... but I think personalised shopping and using technology has real future potential for disabled people.

People are already using Direct Payments to purchase computers and broadband subscriptions to get on-line and go shopping (amongst other uses) - so in a basic form, technology and creative use of funds can really work for people.

Love to hear from twitter folk who are using tech for shopping assistance.

Tesco - if you’re reading this, I’m always available to try out a new bit of tech :-)

Tags:gadgets | independent living | disabled

What do you do when the laws of a religion that describe how a person of that faith should act are oppressive and go against an individuals’s personal feelings or actually cause severe mental distress or a denial of human rights?

I see many examples in relation to my own faith, Roman Catholic, on one of the most widely used and promoted web forum ‘Catholic Answers’. What I read always shocks me for a faith that should be so loving and none judgemental yet can manifest as a cruel torment for disabled people.

Here is one example. A young woman who has Tourette’s Syndrome asks people on the forum for some guidance. She finds managing stress difficult, experiences sleep deprivation and describes herself as having a mental illness. She says she lashes out at times when she is tired and that she has concerns for a potential baby’s safety.

She wants to get married and asks whether she should have children or not and what to do if she makes the choice of using contraception (to the extent of surgery). She knows she would give all she has to be a loving mother.

The question she poses: is mental illness a good enough reason for a Catholic to remain child free.

The Catholic church is unmoving from it’s stance. Under no circumstances should a woman contracept. If a woman does not want children she must not marry. There are no exceptions. A minority of the faithful (although not in the view of the Church) disagree with this ruling.

Here is the shocking part. This woman is reaching out with a huge dilema and she is not alone - many disabled people pose similar questions on this forum. Here were some of the most shocking suggestions for her:

Option 1: Find a husband to be a full time carer to protect the child and help you be a mother - or don’t marry.

Where is her right to have a husband who remains just that and not a carer? Her right to social care and family life?

Option 2: Is this a calling to religious life. The only person to help with your struggle is your husband or God.

The Catholic view that people in this situation must by default be called to religious life is one which denies people opportunity to realise their true vocation. To provide the advice that you are alone with only God and your future husband to help you work through things is a denial of the many support systems that could be doing some really empowering work. This person needs to be around people who will take into account her social needs, her human rights, her emotional and spiritual needs. Advice which keeps people in isolation from the support of others is surely abusive?

Option 4: “I just briefly read what wiki saids about Tourettes, and I think your suitable to have children.”

and finally - since when did Wikipedia become the oracle for consultation on whether disabled people will make suitable parents or not!

There were eventually some more ‘rounded’ views and I hope this young woman found all the support she needs because she wasn’t getting it from her Catholic community.

Tags:rights | catholic | abuse | faith | disabled

You may have seen this e-mail going around...

It is now more  than 60 years after the Second World War in Europe  ended This e-mail is  being sent as a memorial chain, in memory of the  six million Jews, 20 million Russians, 10  million Christians and 1,900 Catholic priests  who were murdered, massacred, raped, burned,  starved and humiliated with the German and Russian Peoples looking the other  way! Now, more than ever, with Iraq , Iran , and others, claiming the  Holocaust to  be 'a my th,' it's imperative to make sure the  world never forgets, because there are others who would like to do it again. This  e-mail is intended to reach 40 million people worldwide! Join us and be a link in the  memorial chain and help us distribute it around  the world.

Too many people fail to mention the 250,000 + disabled people who were tortured and murdered. Many more were subject to forced sterilisation. Last week Liz Crow took her place on the plinth in Trafalgar Square to highlight the relevance of those events for people today. You can see Liz by following this link.

http://www.oneandother.co.uk/participants/Liz_C

Never forget.

Tags:disabled | holocaust

Monday the 8th of June 2009 - remember that day.

Why?

Two amazing things happend.

1) Firstly Apple showcased a thunderous new iphone - iphone 3Gs with additional accessibility features and
2) Disabled people in the UK finally have rights to equality under the new UN treaty.

Wait - shouldn’t the second one be at the number one slot?

Seriously though, the UN Convention on the Rights of Persons with a Disability is a landmark piece of legislation.

On Monday it was adopted by the UK government and could lead to better daily lives for all of us in the UK who have impairments. Sadly, and true to form, the signing of this has made few headlines. If disabled people are not aware of their rights - then how can we know when to challenge common breaches of equality and dignity?

Disabled people need to know about it and use the legislation to challenge inequality. We want to be treated with dignity, respect, fairness and equality.

Tags:rights | discrimination | disabled | gadgets

It’s blogging against disablism day and my topic this year was going to be entitled life enhancing gadgets and techno wizardry. However, thinking about it - gadgets haven’t enhanced my life - they have GIVEN me life.

I might post a few entries today - and do pop onto facebook if you have a disability gadget question - I might know something that could help!!


I am a gadget nut - I read about new gadgets more than once a day and I’m counting down the days until an iPhone finds its way into my hand.

So what have amazing feats of technology done for me. Well, if you know me it;s pretty easy to spot that I have little strength in my limbs (think floppy rag doll). I have MD and it’s a progressive type of impairment - so each day I’m a bit worse than the last. Thankfully - technology has kept up with my needs.

Here’s some examples

Gaining an education

Taking exams in the 90’s. Laptops were like telephone directories in weight and cost an absolute fortune. However, I couldn’t take notes in class and my dictation skills were useless (and disturbed other people to be honest). It also meant they had to pay a nursery nurse (yes that;s what they called educational personal assistants) to take notes. So, education would have been a nightmare - had it not been that laptops were just about in existence and my local education authority sent a geek in glasses and a beard to deliver one to my school. So I became fluent in touch typing, got rid of the nurse and kept up with lessons alongside everyone else. I was starting to become gadget kid to the envy of everyone. Within a year, apple computers were installed at my school - about 15 of the old apple II series cubed, black and white, small screens. I spent many hours in the free to enter room drawing and typing - and my love for all things Apple introduced a range of inclusive software.


Going to Uni was different - the laptop was confiscated and I was told to go and raise funds if I wanted one. It wasn’t a case of wanting one, I NEEDED one. Disabled people had no legal right to one like they do now under civil law. A few calls to a local newspaper about this injustice got them to cough up - so I gained my first degree.

Mobile phones

Whilst at Uni - the invention of the mobile phone meant that I could trundle around in my elecy wheelchair - safe in the knowledge that my brick would just about have enough power to call for assistance should I get stuck or need general assistance. It was a life line and eventually I hooked it up to my wheelchair battery to ensure maximum power. Nowadays, micro life-line pendants, pagers, telecare and similar support millions of people to make life saving connections with carers, assistants and others.

Later, I was unable to use my arms and lift a phone to my ear - and low and behold they got lighter and easier to hold - so I dumped the Erikson brick for a small Nokia - and life continued.

Then I couldn’t hold anything up to my ear - so hands free and bluetooth became the way to go.

Now I can’t press buttons so well - so my iPhone will be fantastic because with just a tap I can get texting again. An when I can’t tap - well brain wave power is coming on line for controlling things - so thought controlled apps - here I come.

With the right technology I’m not disabled - I can keep in touch with people and even control my home environment and get around as much as anyone.

What I’d like to see bring us into the 21st century

1) Better electric wheelchair design - they have had 4 wheels and a clunky, bulky, inaccessible design for many years. Although we have seen a few more functions (raise, tilt in space, stair climbing and use of gyroscopes) the overall functionality has not really improved with the technology available.

If you could see what the NHS offered me you would think we were in the year 1908 - it was only an electronic step up from a basket.

Tags:disabled | independent living | gadgets

It’s blogging against disablism day and here is my round up of top gadgets and innovative products that, in my opinion, are not to be missed.

Just the other day I was Oooo-ing at an iPhone that a BSL interpreter had on one of my courses. Now there’s a phone that I can’t wait to get my hands on. But wait, I hear your cry. What about blind people - how are they going to manage in a world that is going touch screen? To which I replied, well actually... did you know that people with visual impairments CAN access a whole range of apple products with some interesting innovations and built in design

It’s true, technology can be life enhancing and access features for disabled people are at risk of being left out of the top ten things to include in new devices.

Being a total tech head I’m always on the lookout for the next gizmo and gadget that I can’t possibly live without - and many of them are offering life enhancing capabilities and good accessibility.

Innovation:

1) Lip-reading computers developed at the Unversity of East Anglia. Many disabled people lose their voices but retain lip movement so this would be perfect. Think of the business applications - especially when it can read several different languages. More about lip-reading computers

2) Phones. Other useful tech includes the ability to translate sign language to audio for mobile phones. If you have no vision then this concept case for the iPhone is interesting.

Moving on - you can now control your light switches from your iPhone! I have so many remotes for switching plugs and lights that to have one cool gadget as a universal control - now that’s progress.

So, my next one is home automation (environmental controls).

3) Home automation is now affordable outside of ‘special disabled equipment’ from the NHS. In my dream world, one command would open the curtains, bring the lights up from dim, set the radio going with soothing sounds whilst my coffee and breakfast was being made for me in the kitchen by yet more fab gadgetry. Oh wait, actually I suppose I do have this in the form of a PA... hmmm.

4) Brain waves for blogging and tweeting. Yes if you can’t move a muscle then use your noggin to keep up with your bloggin (I always knew I was a poet???) and use of Twitter (if you don’t mind wearing a mad cap full of electrodes - hey I’d try it).

5) Brain waves for controlling wheelchairs. Yes working prototypes are available. You programme your chair to move left or right according to thinking about a particular object. What happens when you’re weaving about the newsagents thinking Left Left Left and your distracted by a top shelf magazine I don’t know - perhaps you start spinning round or something!

6) Gadget web-sites - I’ve found many a useful invention on these sites.

http://www.coolest-gadgets.com

is my favourite one but there are lots on the web - go and see if you can find something that could change your life!

Tags:disabled | independent living | gadgets

My topic this year - gadgets (ohh let me think, will Apple feature or not....)

Join me and chat on facebook.

Tags:disabled | website | discrimination

I am a none-believer. When you phone up somewhere you want to go and ask ‘do you have wheelchair access’ a yes can mean anything from:

a) We have a huge flight of stairs.
b) We have 6 strong men to carry people.
c) You can get in through the door only.
d) Yes - but don’t expect to use the loo or changing rooms.
e) Yes - complete access to everything a none-disabled customer would expect.

For true equality (e) is the only option.

Yesterday I went out for lunch for my father-in law’s birthday at a local pub.

Yes meant ‘if you can negotiate an inch or so step immediately followed by a 90 degree turn in a space not much wider than the average adult wheelchair and don’t need the loo’. We took of my foot plate to make me as slim as possible and with husband nearly losing his toes we made it. I count this as quite good past experiences considered.

The best one was a search for an accessible cottage. It listed a lighthouse. I though perhaps the ground floor was a holiday cottage with access - but apparently not, it was a very tall lighthouse with hundreds of steps listed as wheelchair accessible.... beat that!

Tags:disabled | access | wheelchair

Pop along to Naidex web-site.

I am researching accessible layouts of exhibitions and thought I would see what the NEC has to offer where Naidex is held.

“As the UK’s largest event for homecare, disability and rehabilitation. Naidex is your best opportunity to touch, test and compare all the latest new products and services available.”


So, I clicked on ‘visiting’ and then onto frequently asked questions.

Would this site answer it? No. I found this:

“What are the disabled facilities?”

and the link went to a dead page.

Hmmm... is this a conspiracy to prevent disabled people from finding out about access.

I don’t think exhibition venues actually look at access within the great halls. A maze of stands, flyers sticking to your shoes that have found their way onto the floor and a phobics nightmare if you ‘don’t do the people thing’. Not to mention the buzz of thousands of voices and even scarier - lots of therapists milling around. Aghhh.

It’s a nightmare.... I don’t care how many accessible parking spaces and toilets they have. This does not an accessible venue make, dear Sir.

Tags:website | disabled | access | Naidex

New web standards have been issued by the World Wide Web Consortium (W3C) with regards to access for disabled people.

This is WCAG 2.0 and applies to all web content (text, images, sound, video etc).

(Web Content Accessibility Guidelines)

There is also standard BS 8878 - a British draft standard on process.

What does this mean to my business?

Firstly all businesses (including voluntary organisations) must ensure their web-site is accessible to people with a range of different impairments including people with impairments which effect:

• Movement (alternatives include using a mouse, graphics tablet, switches (singe button, head control etc) and adjustments to keyboards).
• Ability to read e.g. someone with dyslexia, learning difficulty or visual impairments.
• Hearing and vision (alternatives include design changes, subtitles/captions, audio description)
• Concentration or cognitive ability.

“These guidelines also make Web content more usable by older individuals with changing abilities due to aging and often improve usability for users in general.” [W3C:2008]


Any person who experiences difficulties using your website (to the level of functionality that is offered to those without impairments) may fall within the Disability Discrimination Act.

Failing to ensure accessibility is unlawful in the UK under the DDA.

What should I do?

You should ensure that you meet the British Standard on web accessibility:

http://drafts.bsigroup.com/

and international W3C standards on:

http://www.w3.org/TR/WCAG20/

and the DDA.

Tags:disabled | discrimination | access | website

As a freelance trainer, I have been doing some courses lately at the sorts of night stay hotels you see at motorway stops (without naming names....).

Anyway, about 1/2 of those I visit for the first time do the following.

I report to reception.

‘Hello, I have a group for training booked by [x] can you tell me which room I am in please]’.

they then either lead me into a foyer and say ‘sit here the trainer will be out soon’, or turn to my PA and proceed to introduce themselves as if she is the trainer.

So I thought, I will clearly introduce myself as the trainer next time I do a course.

Method 2

I then went to a company and on arrival about 45 mins before the course started, I said to the receptionist:

‘Hello, I’m here to do the training.....’
“Oh I think there is training in there, but I’m a bit concerned because the trainer hasn’t turned up yet’.

Ehm... let’s start that again, I thought.

“No, you don’t have to worry - I AM the trainer....”

“OOOOOH. Your the trainer... oh oh oh.”

This company also made a ten minute toilet trip a 30 minute one because my PA had to clear the corridor of material being stored, to open the WC door, and put it all back afterwards. So 0/10 for access.

Tags:disabled | attitudes

Earlier this year I applied for part-time work with a large organisation who brand themselves around equality for all.

I met all the qualifying criteria for a flexible job that involved lone working, out and about in the community with disabled people and carers.

They were particularly keen to recruit a disabled person into the post because the nature of the job involved being a role model.

I was invited to an interview - after the first one had to be re-arranged because of an inaccessible venue.
(Not a good start).

The appointment was out of the county with no communication regarding access, parking or similar. I had declared my impairment, PA and access requirements many months in advance. They felt there was nothing particular I needed to know.

It was also early in the morning - difficult for me, but I was keen and I am fortunate in that my PA is flexible with her hours to get me up in time.

I eventually arrived to find one of the interviewers standing at the door waiting.

The door into a cold, echoey hall had a step and was a fire door that didn’t stay open so well - but with my PA and them holding the door - we made it inside.

Around a village hall table sat two members of the interview panel.

We reached the end of the interview and they gave every indication that they were very keen. I had some good answers, excellent qualifications... then the doors to the job slammed shut.

A questions about reaching out to minority groups rang alarm bells. One of the interviewees said that ethnic communities keep to their own and look after each other and wouldn’t want this service that I would be providing - this was not the question but part of some chit chat after I responded. It appeared, alarmingly, the person’s actual mind-set. I questioned this approach and was swiftly moved on to the final part of the interview.

Did I have any questions.

I said I presumed because the job was a mobile worker that I could manage my own time and could work from home for ‘admin’ type duties.

I received a stern ‘NO’ and reminded them that my impairment would make it difficult for me to report into an office every morning before I hit the road. They said they had a strict no home-working policy. I looked puzzled and then the second interviewer butted in with a ‘of course if it is a disability related adjustment we would have to talk that over with personnel’.

I said that I would also have access requirements if I was going to be asked to go into my local office.
The response was ‘you’ll be ok, we already have a wheelchair user in there and they manage alright’. I said, no you don’t understand.....’. I had to go into a very undignified description of the room I need to use the bathroom and have a PA around to help.

I had been into the local office before and the manager had said that you had to take the doors of the hinges to allow people in wider wheelchair corridor access to the WC - I only just made it with a lot of difficulty.

The interviewer apologized and didn’t realise what a PA was or that disabled people had different needs - and thanked me for helping her understand... what cheek!

Next I asked how flexible they wanted me to be - because if I needed to work evenings or weekends I would have to recruit or find a PA. They looked blank and said they didn’t know and that I had to be available at all times to see when the work was needed. I had not applied for a job which said you had to be available 24/7. I said, just to know if it was 2-3 evenings or something would be helpful. They said ‘we don’t know’. I felt this was now becoming a way for them not to offer me the job. I think they did know what the likely hours were because of people doing this job in other counties - or at least they could have found out.

After a few more comments that I felt were racist- I left. I decided if they offered it to me I wouldn’t take it based on their attitude. I have heard similar stories from other disabled people applying to work for them.

The reasons for not offering me the job - I couldn’t guarantee I would be flexible and I wasn’t ready for that type of work (whatever that means).

I became another statistic.

Tags:access | disabled | discrimination | wheelchair | third sector

Insight: Work fit for all - disability, health and the experience of negative treatment in the British workplace.

This is the title of a new publication by the Equality and Human Rights Commission.

You can download this EHRC document here.

It explains how Britain (compared to other countries) has large numbers of disabled people with proportionately fewer in employment.

Incapacity Benefit claims have doubled in the past 20 years and the Government wants to reverse this trend.

So why aren’t disabled people getting jobs?

Research shows that disabled people perceive themselves as being subject to negative treatment at work - it is the fear of discrimination.

On a personal level, I can understand that when you are discriminated against time and time again in many parts of your life - why should work be any different?

Is this perception accurate?

Well, those surveyed who had attempted work agreed that negative treatment at work was experience and that for many it had made them ill (and many developed long term illness).

Negative behaviours and attitudes were not just from managers or supervisors - but work colleagues and customers.

What did the figure show:

25.4% of disabled people experienced intimidating behavior compared to 13.4% of those with no impairment.

14.4% received hints and signals that they should quit their job with only 8.7% of those with no impairment.

37.3% experience being shouted at or someone losing their temper with them compared to 25.9% of those with no impairment.

Disabled people felt more threatened, treated in a rude way or insulted, subject to gossip and experienced more physical violence.

In fact, disabled people experienced

More information:

For people with:

• A learning difficulty, psychological or emotional condition, the likelihood of negative experiences at work was increased by 167 per cent
• ‘Other’ conditions, the likelihood was increased by 128 per cent
• ‘Physical’ conditions the likelihood was increased by 3 per cent.

In contrast, other important variables were:

• Sexuality - being gay increased negative behaviour by 55 per cent.

Multiple oppression is an important factor where a mental health survivor who is gay could experience extremely damaging effects of work and may well be healthier if they were unemployed - something the government is now forced to contemplate in its ‘work is good for you, your community and the economy’ approach.

Employers - more needs to be done within businesses to end discrimination.

Employers will be asked, under possible amendments to legislation, to prevent illl-treatment and harassment of disabled people in the work place and promote dignity and respect.

Tags:business | DDA | employment | disabled | discrimination

The Universal Declaration of Human Rights (UDHR) turns 60 on 10 December 2008. On Human Rights Day 2007, the United Nations Secretary General launched a year-long UN system-wide advocacy campaign to mark this important milestone. The initiative celebrates the Declaration and the promise that has made this document so enduring: “Dignity and justice for all of us”.
Disabled people are often denied their rights - both civil (DDA etc) and human rights.
To find out about ensuring disabled people have their rights within social care practice, why not visit:
Equality and Human Rights Commission - Human Rights
Topics cover:

Fair and dignified treatment
Taking part in the community
Living the life you choose
Being safe and protected from harm

Rights in different settings - essential for all social care staff to implement.


Topics include:
Health and Social Care, Houseing, Learning and Training, Criminal Justice System etc.

Disability Equality Duty - applies to all local authority workers.

Tags:disabled | rights

Jonathan Shaw, disabilities minister, has announced that the UK government will not ratify the UN Convention on the Rights of Persons with Disabilities this December.
The delay could last until Spring 2009 or later due to lack of commitment to parts of the conventions.

What would this do for disabled people in the UK?

Dr Alice Maynard (Scope chair) said:
“This treaty is of huge political and symbolic importance for disabled people and will help strengthen our rights in all areas of our lives, from education to family life.”
It would give disabled people the right to go to the UN when they have exhausted the legal processes in the UK.
It also has the potential to change existing legislation such as the Disability Discrimination Act and Disability Equality Duty and challenge attitudes and stereotypes.
One particular point that brushes heavily with social care is the right to life.
The articles referring to the Right to Life is emotive. It would give specific signals that the birth and continued life of disabled children should be sustained. Also that children of disabled parents should not be separated against their will purely on the basis of ‘disability’ - rather society should support disabled parents with their children and that to do otherwise would be a clear breach of their human rights as a family.
Another article (24) would ensure equal access to inclusive education - in the mainstream if this would not be to the detriment of other pupils.

Has anyone else signed up to the Convention?

On May 3rd, 2008, 127 countries brought disability discrimination into the 21st century. Disabled people in Ecuador, for example, now have more protection of their human rights than UK citizens.
More information
UN - easy to read guide to the Convention
Human rights and disability UN Convention.info- the only UK website devoted to the convention - news and information.

Tags:disabled | rights

Today is the International Day of Persons with Disabilities.


It was established by the World Programme of Action concerning Disabled Persons and adopted by the General Assembly in 1982 (United Nations 2006) and is based on the goal of full and equal enjoyment of human rights and participation in society by disabled people.

This year the theme is:

"Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us".

You can read all about this years theme by following this link.

“Legislation alone will not ensure that persons with disabilities can enjoy their human rights. States will need to formulate effective policies and programmes that will transform the provisions of the Convention into practices that will have a real impact on the lives of persons with disabilities. “

Some facts:

• The UK has not signed up to the Convention.
• This day used to be called International Day of Disabled Persons in 2007 - and has taken on a Medical Model title.
• 400 million people (80% of disabled people) live in poor countries where poverty is the main cause.
• 50-70% of disabled people in industrialised countries like the UK are of working age but unemployed.
• 20 million women acquire disabilities as a result of complications during pregnancy or childbirth.
• 90% of disabled children in developing countries do not attend school.
• 650 million people in the world are disabled.
• Older people with impairments are also ‘disabled people’ - so why say ‘disabled and frail older people’?

Tags:disabled | rights

BBC Radio 4's Money Box was broadcast on Saturday, 5 April 2008 at 1204 BST.
In the programme the lack of alternative formats was addressed. This was in relation to American Express offering bank statements in PDF formats that were not coded for visually impaired people to read via their screen readers. The issue has still not been fixed and is causing difficulties for the many people who use screen readers (Blind and visually impaired people, those with reading impairments who listen to the spoke word and people with learning difficulties who may also find it easier hearing items rather than reading them.
This is unlawful under the DDA and American Express apologized to the BBC stating that they are working to fix the problem that began last December.

Tags:alternative formats | access | DDA | disabled | discrimination | visually impaired

I am currently about a month into a post graduate course as a disability practitioner/consultant and trainer. Disabled students can apply for a grant/allowance that covers disability related costs which can pose a financial barrier to education.

To get the grant you have to have an assessment and confirmation that you have an impairment e.g. GP letter etc. My consultant once again confirmed that no miracle had occurred since the last two times I had this grant to study and all that remained was the assessment.

I spent quite a few hours with an understanding person trying to make sure I was applying for all the right personal assistance and equipment I would need to complete the course on an equal footing with a none disabled person. Much emphasis was placed on how I use electronic formats e.g. e-mail and web forums for communication, notes from a laptop I also hope to get, I read journals on-line and can't write much more than a few words.

Now, due to difficulties in holding books and papers (and looking down to read the things which effects my neck) I have documents I can read on a computer screen - nothing special, just word or pdf documents sent via e-mail.

My assessor wrote all this down and what happened next.....

he sent a several page report on my access needs - in print copy only.

This is typical - and the fee for this person to write that report is deducted from my grant!!

Tags:alternative formats | disabled | education | access

It is good practise, when serving a disabled customer, NOT to do what my optician did yesterday by asking how long I had needed a wheelchair and why. I explained I had MD and he said 'oh yes just like Stephen Hawkins'. Shame he was totally wrong and was only comparing our bodies rather than our minds - I wish!

Disability Equality applies to how you address a disabled person and you can be in breach of the DDA because you wouldn't ask a none disabled person such personal questions that have no significance to providing a service. It brings undue attention to a person's impairment where it isn't needed. I personally find it frustrating and annoying.

Tags:disabled | optician

Yesterday a new way of making an emergency call was launched - by Text Message. I have worked with a number of disabled people within the first aid and emergency services where this would have been a life-saver for people who can't hold a phone, have a speech impairment or are Deaf. I taught a Deaf lady on a first-aid course one year where making the 999/112 call was very difficult for her to be understood.

My texting life saver.

As a person who finds it impossible to hold a mobile phone, I found myself in a predicament where a care worker was becoming drunk and about to physically abuse me - or worse. I had employed a live-in, male care worker and all was going well until I started smelling alcohol on his breath. His references had all checked out and a CRB was being carried out. I then heard that he had been dismissed because of alcohol and related problems from a previous care worker job and should not be working in this field.

I discussed my findings and he was due to leave the next day. However, by the evening he was intoxicated through consoling himself because he had lost himself another job - and things took a sudden turn for the worse. Every indication was that there was a high risk of an abusive situation but then things got even worse.

My electric wheelchair went from having a slow puncture to being being completely flat in a few seconds. I was stuck in the middle of the room with a care worker who was making advances. I also knew that he had taken a knife into his room for some unknown reason. I couldn't make a 999 call as it was too difficult and it could have pushed him over the edge. He wanted to kill himself and now there were two lives in danger.

I had, however, told a friend what was happening and if I texted a code word the police would be called. I did this silently and effectively. Thank goodness I did, just as the care worker touched my face the door went - it was the police who removed the man from my property calmly and effectively and I live to tell the tale.


PRESS RELEASE SUMMARY: 26th February 2008

Emergency SMS texting service for deaf and speech-impaired people launched

From: Kent Fire and Rescue Service and Kent County Council

A new SMS service for Deaf and speech-impaired people was launched at Kent Police Headquarters today (26 February 2008).

The launch of this partnership project coincided with a visit from Anne McGuire, Minister for Disabled People, who was visiting Kent Police Headquarters to attend a disability action group meeting.

The initiative is a joint venture between Kent Police, Kent County Council (KCC) and Kent Fire and Rescue (KFRS), and will allow those with hearing and speech problems to 'text' the emergency services when they require help.

Those using the SMS system, will have to start their text with the word 'police', 'medic' or 'rescue' depending on which service they need, followed by the rest of their message. The text will then be channelled to the relevant organisation and dealt with immediately.

Kent Police Assistant Chief Constable Steve Harris said: 'This new service means that deaf and speech impaired people will be able to alert emergency services of concerns they have quickly and effectively, without having to face problems that could be linked to conventional methods.
'With technology moving forward all the time, it's vital that we use the latest and most efficient means of communication for everybody in our local communities.'

Minister for Disabled People, Anne McGuire said: 'I am delighted to see the launch of this invaluable text messaging service. It will empower deaf and speech impaired people to gain quick and easy access to emergency services where and when they need to. I would like to express my thanks and congratulations to all the organisations which have put in such hard work and dedication to make this happen. This project is a great example for the rest of the country.'

KCC Cabinet Member for Adult Social Services, Kevin Lynes said: 'I am delighted that Our Deaf Forum and staff in Deaf Services have played such an important role in the setting up of this vital system. This is an excellent example of pooling resources and together with Kent Police and Kent Fire and Rescue; this new initiative can quite literally save lives.'

Assistant Director of Kent Fire and Rescue, Steve Griffiths, said: 'We are delighted to be teaming up with our emergency services colleagues to launch this new service. It is really important to us that deaf people are able to contact us quickly and easily if they need our help- and this new service is a great solution.'

Posters and leaflets advertising the initiative are currently being distributed in key locations around the county.

Tags:disabled | independent living | wheelchair

PRESS RELEASE SUMMARY: Harrow Council found guilty in acting unlawfully.

From: Public Law Project. A small section is show below and the full press release is available from: Public Law Project

"20 December 2007

High Court finds that Council acted unlawfully and ignored rights of disabled people

Harrow Council forced to reconsider new policy withdrawing care services from 100s of residents

In a key case about disability rights and the provision of care services for 100s of people, a judge found a local council had acted unlawfully when introducing its new policy because it had breached its duties under the Disability Discrimination Act.


The case, brought by the Public Law Project (PLP) on behalf of three service-users in Harrow, was a challenge to Harrow Council’s decision in July this year to restrict the care services it currently provides to people with critical needs only, withdrawing care from those who had substantial needs. "

Tags:disabled | discrimination

As a dedicated family historian researching my ancestry, I purchase a popular magazine called 'Your Family Tree'.

In the last issue, they accidentally printed some of their articles in a pale font on a pale background and made it difficult for vision impaired people to read or 'those with poor eyesight' as they described.

Nice to see that not only have they apologized publicly but they have made an accessible downloadable version in a pdf for people who can access the Internet.

Congratulations to the Editor for apologizing and avoiding a potential DDA claim from it's readers. Perhaps others publications could take note... I''m off to have a read.

Read what the company said by clicking here.

I posted a comment on their website and added this note in reference to their SPAM detection:

(Apart from to publish this I had to answer a maths question which many disabled people would find difficult should they have a cognitive impairment)

Tags:disabled | discrimination | business | visually impaired | alternative formats

What are my chances of getting a contract?

Did you know that 1 in 5 people are disabled - but only half of disabled people (of working age) are in employment?

Many have the right qualifications but are never asked to an interview.

80% of non disabled people (of working age) are in employment earning more than their disabled peers.

It is highly likely, that in the course of my business, people, given the choice, will choose a non-disabled service provider because of prejudices and discrimination in the UK.

This is my reality.

Tags:wheelchair | discrimination | business | disabled | woman | independent living | work | employment