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

Election fever is gripping the UK and representatives of the parties will be trying to get the vote of the undecided like me.

However, will they have the right attitude to get the attention of the disabled voter - or will we just get the sympathy vote from them?

Up close in person - patronising attitudes and accessibility of MPs.

One of the things I have had experience of is lobbying an MP - and that was not pleasant. It was some years ago in St Albans. Myself and some people from a Direct Payment Support Scheme went to a surgery appointment to discuss the Independent Living Funds' 'toilet tax'. As a wheelchair user, when we arrived the surgery wasn't exactly accessible. It involved going up a step, round the side of the building on a crumbling narrow path, through a back kitchen and into a cramped office for all of a ten minute chat.

Access to MPs and similar should be equally available to all but I wonder how many actually are?

Shocking attitudes of MPs and Councillors

About 4 or 5 years ago, I had the displeasure of meeting Ann Widdecombe as my local MP. I was working at the event where she was doing a speech to launch a disability product. There were a number of disabled people with a range of impairments. I had no idea what she would be like - but as she did her meet and greet I soon found out. She bent down, stared closely at me, then studied my chair, then turned again to look at me. In a fiery, shrill breath she bellowed 'so whats wrong with YOU then'. I was stunned.

Do politicians not get any equality training on how to respectfully go about their duties? It's something I will remember for the rest of my life because the conversation didn't get much better despite my efforts to say I was actually working at the event and politely trying to move the conversation away from which parts of me don't work. My work colleagues were horrified and word soon spread! I watched how she did the same with everyone else with an obvious impairment, patronising and shameful.

I have met many councillors and have been utterly horrified at the patronising behaviours and language demonstrated on all but one occasion. Invalids and a pat on the head in some cases.

So - if you treat me in this way, with disrespect and inequality, you should not be surprised when this reflects badly on your party.

You will understand when I say that you probably don't care much for what the disabled members of your community need and the rights that should be theirs when you don't make any effort yourself to get it right.

Do you want my vote or not?

Tags:DDA | attitudes | MP | disability equality | language | respect | election | politics | voter

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

Archive from 2006

I noticed a recent article where a woman in Chicago went to use the loo in her local book store and is now suing them

In Chicago, a woman claims an unsecured toilet seat in a Borders Bookstore caused her to fall and become “permanently disfigured.”

The seat “shifted to the side,” causing her to be thrown onto the tile floor. The suit said she landed on her bum, causing her to suffer “multiple spine injuries, including the need for multiple neurosurgical spine surgeries.”

It made me recall the time when I was at work in Ashford and assured my meeting room had 1 accessible loo. On arrival I saw a sign 'out of order' I enquired and was dismayed at having to stay there for many hours with no loo to use!

A maintenance guy came back and said oh don't worry, it's just that the seat wobbles as it is broke (giving me a demo of a very wobbly seat that was totally unsafe). Considering I have no balance at the best of times I resigned myself to the fact that I would have to cross my legs. He then said something like 'it's not that far to fall anyway... I'm sure it will be ok'. Eh hmmm. Guess I'll be wetting myself then...

Tags:access | toilet | disability

During my training I often talk about the most important things in my life that give me personal choice and freedom. It fits nicely into the how Direct Payments could be used more flexibly and demonstrates rights and freedoms disabled people aspire to.

My number one thing in life is the toilet - and to hear the full story you will need to sign up to a course! So, of critical importance was to make our own bathroom accessible (cue clever hubby in the DIY field). That was in about 2004 and we are still completing it! Anyway, here is the story so far because I know others have written to me about the toilet in particular - so I have moved it onto the web again.
--

Talking about gadgets, the best invention in my bathroom has to be the vertical toilet riser.

Now you see, for all us none mobile sorts the biggest cause of incontinence is inaccessible toilets. This is a complete bug bear because the amount of thought that goes into designing accessible toilets is equivalent to the intellectual capacity of a goldfish.

Then if you can get into the room - there is the question - can I get on and off. Anyway, at home we have specifically designed our bathroom around easy access for me personally, visual appearance and use of gadgetry to make life easier.

In the beginning...

This was our layout to start with.

1) I need to transfer to my left so the toilet is the wrong way round.
2) Not enough room for hubby/PA to lift and transfer.
3) I need quite a low toilet - lower then normal. However it is really hard to lift me up from a low surface - so some gadgetry is needed.
4) Sink not correct height, shape etc and no room at the side for PA/hubby to wash/dress me.
5) Flooring needed to have enough grip so PAs and myself don’t slip when transferring, but not
so grippy that I can’t slide my feet across the floor to transfer.
6) Door needs to move for access.

Our own design.

Then we have transformed and rebuilt it to a 'wet room' which will have a second door leading to the bedroom if we later install a ceiling hoist. (large brown door on right side).


New features:

1) level entry shower i.e. now a wet room.
2) Door now in middle of the room (where it was originally as the owner had wall papered over the door!
3) Huge space (including shower area) on the floor to move around.
4) Chose a sink that is free standing with nothing underneath for lots of leg room, a big space to wash my hair in the sink (in reach of shower head) and room for someone to stand at the side to wash my hair.
5) A ledge behind the sink for a foot stool - so I can balance.
6) And a unique toilet (see below) with a round, bevelled seat (essential for posture and balance). It’s from Denmark (land of fabby toilets) and features rise and fall (and looks like the Starship Enterprise.

More to follow in future days.

Tags:disability | access | equipment | Daily living | toilet

April 2006 Archive

The basic idea is that a product that anybody can use - but is sold in a mobility/equipment shop because it might appeal particularly to disabled people - and the cost will be doubled.

Now - here is a real life example. My task - to find an umbrella or sun parasol that will clamp to my wheelchair. The choice appears to be two 'special' ones. This most common pictured here. Now, how much to you think this would cost to buy (Its just your average umbrella with an added flexible clamp and bendy bit).

Any offers of £5, £10, £20, £30, £40.....

Well, the cheapest is on e-bay for a starter bid of £13.95 (new) or you can go to a mobility supplier called Scootmart for £32.89 including VAT. Plus you seem to get blue, blue, or blue as the colour.

Just buying a tube clamp and 'normal' umbrella would cost £10-£15.

Or you can get a designer 'Storm' umbrella plus clamp for about £25! How mad is that.

Bean Bag lap tray / tv tray with floral pattern tray = 'normal shop' £1-7 on Ebay or a posh Marks and Spencer one for £12

Mobility / Equipment shop '£13.95 + for a basic one with no interesting picture.

The above items, if I bought new on Ebay would cost be around £25 incuding P&P. In a mobility shop this could have cost me 47+P&P. Even taking VAT of disability items it is still a lot of money - for a community the least likely to be able to afford it.

What a rip off.

Tags:equipment | Daily living

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

A few days ago I got round to asking Access to Work if they would fund a voice amplifier so that people on my courses could hear me clearly. The only reason I need one is because my lung capacity is not large enough to get enough air through my vocal chords for a decent amount of noise. It was either that or provide everyone with a hearing aid - I thought this would be easier all round!

I thought it might turn into a saga and found a piece of equipment, e-mailed it to Access to Work with the price and basically explained why I needed it and what it would cost. Within 24 hours they said I could go ahead and order it. Brilliant.

Then I thought, would I be able to save Access to Work a bit of money by seeing if I can get the VAT off it?

My quest to get the VAT off

I wrote to the company (Connevans) and got quite an abrupt reply saying no. They said they had labelled their products with happy faces or red sad faces as to whether they were VAT exempt or not and told me to read their web page.

Mine was ‘sad face’ product and felt like they thought I had a learning difficulty or something.

“As per VAT Notice 701/7 published by HM Customs & Excise, certain specialised goods and services needed by disabled people may be zero-rated for VAT – when purchased by a disabled person for domestic or personal use or by charities who provide care and facilities for disabled persons. “
 
I wrote back saying I had read the paragraph and indeed knew of that some people had had communication equipment and voice amplifiers with the VAT off.

I was the disabled purchaser (one tick in the box)
It was for personal use (second tick)
I chose it because it had design features like buttons that I could use etc. - to me it was specialised.

They manager quoted Revenue and Customs saying the equipment was not ‘specialised’ enough and that their must be a ‘design intent’ in relation to disability. He said I should contact the VAT office. I did and they have so far refused to comment.

Quest thwarted.

So, considering we are in an age where inclusive design should be the norm (i.e. build accessibility and usability into everyday products so all people can use them), the government is saying that disabled people who identify a product that they only need because of their impairment will have to pay full cost because of the ‘inclusiveness’ of that product.

This ensure financial discrimination - for some people the VAT addition may make the item too expensive to purchase and it becomes yet another disability related expense on essential equipment and services.


Ironically Connevans deal in ‘disability’ products and were selling it knowing that it was something particularly that disabled people would use. Individual companies appear to be getting different advice on whether to charge VAT or not to disabled customers. This is inequality.

One arm of the government has given me a grant because they recognise that I need this equipment because of my impairment. On the other hand, they also seem keen to take it back through their own tax system. Now why should that surprise me!

Update 1- since posting (LOL I’m sure they are watching me) the VAT office have confirmed that products designed for general use or for use by disabled and able bodied people alike are not VAT exempt. So all products which have inclusive design and benefit none disabled people also will be charged at full price.

Update 2- Access to work lost my claim form and said I had to resubmit all over again - I decided to not claim the money back and hence bought the item myself.

Tags:employment | equipment | inclusive design

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