I started this blog on Thursday while watching Channel 4′s programme ‘Born to Be Different’. This documentary has followed a group of disabled children since birth.  Zoe, a disabled girl of 11, trots off to mainstream secondary school for her first time. She is a bubbly child, stoical with a cheeky smile.

I’ll write about this programme in another blog.  For now I want to note the poignancy of Zoe’s journey into adulthood. It will be fraught with extra difficulty against the backdrop of what we were fighting for on Wednesday, and the hideous ideology that has lead to it. I’m apprehensive at what awaits these young people. How the mainstream can coo in awe at them now, the seeming heroism of their battles with their impairments; yet the polarization is plain. After all, some people out there espouse that disabled children should be put down as too expensive. Whatever else, hit past 16 and voila, from cute kid to scrounging crippled adult.

I will never forget Wednesday. The morning passed in a very British mix of sunshine, rain, hail and blustery wind. During the speeches at the vigil, I delivered this ironic piece penned by myself and Sophie Partridge (both current receivers on Independent Living Fund) for the occasion.

We would like to announce to you advance notice of a new perfume range. 

“Parfum de piss” – the authentic aroma of the neglected disabled person, capturing the fragrance of the lavatoire, fresh from the soiled bed and chair.

This scent is for those special enforced moments, hours, and days, when the care funding and independence is cut.

Available to you now in several varieties.  

“Damn-You Dew”, the delightful smell of meaningless lives and empty existence.

“Non-Veggie”, with the top note stench of the individual disabled person starved of fresh food.

“Bouquet de midnuit”, an essence of frustration that encapsulates captivity – within your bed, your four walls, set against the happy aroma of folk living their lives.

“Desperation”, the ultimate scent, full of the final inevitable pong of condemned worthlessness.

Available shortly from Ex-recipients of the Independent Living Fund

Manufacture supported in the UK by the Department of Work and Pensions.

People laughed where we hoped and the point was made. Expect to hear this skit again in various guises over coming months.

The rest of Wednesday was bathed in a grey indecisive light. We were lead past road-works and cobbles to the side of the court; the famous front entrance not accessible (of course). Inside we clogged up the security checks, and filled the corridor in our wheelchairs; lawyers in their gowns nervous in picking through such an outlandish, unprecedented gathering of the disabled. An usher guided us graciously in the right direction. We are informed the accessible toilet is three floors up. I predict a queue, as on the occasion we went to the central lobby in Westminster, after the Hardest Hit March last year. Never had the like been seen.

Today, we are in a modern court room, a sterile place. I scribble notes in my journal – and hope I’ve distilled them into some decent shape below.

How far they (the legal folk) seem from us, I muse, as we, disabled people, fight for basics they can scarcely understand. Rows of books stand attentive on uniform shelves. I wonder if you are real, you books in the court? The Royal Courts of Justice. Do you groan with helpful law, while we sit, sit, sit, most certainly sit, defiant-stony, fitted into any reasonable corner we find, a bristling company of wheelchair-users and allies.

It’s a modern room and disappointing to my writer’s sensibilities. The lights are insipid boxes on the ceiling, white and characterless. Microphones hang high by the wigs, barristers and judge alike.

Our barrister begins. A spiel of sub-clause, tab, contexts and M’Lord. We sit, as we must, in the best effort of silence we can manage. Page 54: he quotes, elucidating the judge. Panglossian: a word not liked.

Independent Living is the jargon term: so says our barrister. A sharp thought hooks my mind at those words: independent living. Does any of this truly link to whether I am condemned to sleep in my own pee? To live with dignity, to be the most I can be?

The benches look new, horribly, squeaky new in a strange shiny flat-pack wood appearance. I sit next to my ex-husband, and good friend Gabriel Pepper, who is one of ‘the five’ bringing the challenge to court. With a secret smile I think of the dusty pews, church fonts, standing stones and endless ancient wonders I have seen on holidays with him over the years. Holidays possible because I have ILF funding…

Words and more words from barrister, from the judge. I dismiss the ugly carpet with its prissy pretend gothic motifs and realise how alien we are in this august environment. Stubborn and made radical, not so polite with our flaunted impairments.

In the chill dry air, solicitors pass notes; the defendants – the DWP – shake heads, faces emotionless. The tedious technicalities of the process plod on.

Sly naps threaten us as points are picked over, paired to strange bones we cannot recognize. We cough, gurgle, swallow, yawn, fidget. We are what we are and make the effort to listen, as the legal process begins the tentative untangling of our lives, our survival. I leave when nature calls, causing a pleasing rearrangement of the court space; this is our reality, we shall not apologise for it.

That was the end of my involvement in day one of our battle regarding ILF, as it strained into the public eye. Not public enough; the new Pope hogged far too much time regarding TV coverage. But we will be back and we will prevail.

So, as I prepare for bed (with assistance), let me say this; we fit uneasily into the labels you give us; the ‘severely’ disabled. But do not for one moment believe that term equals meekness and our silence – it never will.

The government announced its closure in December 2012 but even before then many of us and our organisations felt the bell tolling its doom. The lacklustre and often nonsensical consultation process seemed nothing but a tokenistic gesture, and that is why we brace ourselves for the judicial review to challenge it.

But I want to rewind five days. Last Saturday I was delighted to be performing a spoken word piece at Criptease, part of the Women of the World festival at the Southbank, in the Clore Ballroom. A neo-burlesque show celebrating disabled women’s bodies and sexuality, I’m proud of my involvement, past and present. This is me, one strand to my work, part of who I am. Defiant and unabashed. To talk sex and strip is as much of a political act to me as is going on a rally.

Another day and here we are fighting for freedoms so basic it is criminal we have to spell out the intimacies of our needs to make a case.

What do non-disabled people do in the mornings? Do they have a pee, a shower, breakfast? There are always variations on a theme, but what is so hard to grasp here? I do these things – with assistance. I leave my home – with assistance. I socialise – with assistance. I work – at the Southbank in a burlesque show – and very much beyond; with assistance.

Back to 8.35am this morning. Radio 5 Live call and I do my best for 4 minutes. What independent living is about; the realities; the hypocrisies from the government. I briefly mention my appearance at the Southbank – because the assistance to pursue my potential as a writer/performer, is as fundamentally important as that support to get out of bed.

It’s a cold day on The Strand as I manage to find parking in an area where Blue Badges cannot be automatically used. There’s a decent gathering by The Royal Courts of Justice, with its iconic facades. The press cram through us, steely for photo-opportunities. I speak to any who ask – this is not a day to be sniffy. I say a few words to Tracey and Ellen from Inclusion London, see many friends and old campaigners.

Speeches are made, we are roused and rallied. I feel that deep glow of pride that comes from unity. Together we are stronger, a cliche but true. Soon it is my turn; to read out an ironic sketch penned for the vigil, by me and Sophie Partridge, close friend and comrade in the cause. The clouds gather in darkness and sharp white hail falls on my red hair and green coat. Unperturbed, I deliver ‘Eau de Piss’, to laughter and good effect.

More on that tomorrow. And the surreal experience of going into the court room with so many other wheelchair users.

I’m tired now. I am ‘severely disabled’ after all…

In Oklahoma we are usually very concerned about our fellow citizens. However, some decisions have been made recently through political processes that have put a few of our most fragile and dependent folks at high risk for losing their quality of life and in some instances their life, literally!

I am speaking of the closure of both of our institutions that are responsible for caring for our most profoundly disabled citizens. This leaves them with no other alternative but to move into a community-based living arrangement in which most of them have already had failures.

The Northern Oklahoma Resource Center (NORCE) in Enid and the Southern Oklahoma Resource Center (SORC) in Pauls Valley are Oklahomaʼs two State maintained residential centers that specialize in the care of our most severely disabled loved ones. There are other private Intermediate Care Facilities for the Intellectually Disabled (ICF/IDs) around the State but they differ in that they get to pick and choose the residents that live in their centers. Therefore, NORCE and SORC have been “safety-nets” for our most difficult to manage clients. Most of the people who live at these resource centers have not been able to function in any other living arrangement. Eliminating this successful lifestyle would be disastrous for a majority of residents who have been there for forty or fifty years.

Oklahoma is not the first State to do this. Eight others have preceded us, and in every instance, they have experienced serious situations because a few of the most extreme behavioral and medically fragile clients could not transition into community group homes.

This national trend to close residential institutions that care for our intellectually disabled, mentally ill, and developmentally disabled individuals comes from a school of thought that everyone should be living in a community environment where they can participate in civic activities and integrate into the mainstream socially, occupationally, and recreationally.

The leaders who adhere to this philosophy believe institutional congregate care isolates the disabled citizens from a higher quality of life in the community and puts them in an “out-of-sight,out-of-mind” situation. They look at it as segregation. In order to support their philosophy, they have to exaggerate the description of our current residential facilities by describing them as they were back in the 40ʼs, 50ʼs, and 60ʼs.

Fortunately, for our loved ones that live at our Resource Centers, this is simply not accurate. They are experiencing their highest quality of life in a loving and safe environment. They have direct access to medical, dental, and therapy services by providers that specialize in their situations. Their medications are strictly monitored to avoid over-sedation and serious drug interactions.

They participate in a robust occupational program that places them out in the community daily. They make money and purchase personal items that they desire.

Importantly, they have consistent and timely schedules because variations in daily activities are usually very stressful and upsetting to them.

Oklahomaʼs Resource Centers in Enid and Pauls Valley have allowed 250 of our most fragile and vulnerable citizens to live well beyond their life expectancy in a happy, safe, and loving environment.

Access to medical and dental services in communities is a major unmet need. Closing the Resource Centers also eliminates the health services that could be used to serve the disabled clients in the community group homes. Despite these shortcomings, community-based care for most of our developmentally disabled citizens is still the best way for them to have their highest quality of life. When the Hissom State School was Court ordered to close, all of their residents were transitioned into community-based settings.

However, their model of benefits and services was specifically designed for them and monitored by a federal judge. It was a model that could never be duplicated anywhere in the nation due to its high cost and unique individual benefits.

For example, they were given extra funds from the state of Oklahoma to pay the additional rent if they wanted to live in a home by themselves rather than sharing a residence with other roommates with similar disabilities.

Other states, such as Tennessee, that are trying to close their institutions, are encumbering unexpected and prohibitive expenses to satisfy the needs of some of their more profoundly disabled clients that are being forced into community-based care. The politicians and administrators who are insisting on the community-based style of living as the only option for these folks must not be willing to look at the outcomes and unintended consequences of their philosophy.

The state of Oklahoma has some degree of responsibility for 11,000 developmentally disabled citizens. More than 5,000 are cared for by community-based providers that contract through the Oklahoma Department of Human Services and are providing excellent services to these individuals. There are only 250 or less of these folks that desperately need the safety-net option of a residential institutional setting. A reasonable plan to consolidate our two institutions and create a true resource center that provides a safe and least restrictive environment to those who cannot transition into the community – and also offers services to those living in the community – has been proposed. It would help solve a lot of the problems that our 11,000 most vulnerable citizens are experiencing, and in an affordable and predictable way. Please join the parents and guardians of these people who cannot speak for themselves, and contact your state representatives, senators, and most importantly our governor, and ask them to reconsider the closure of both of our Resource Centers. Their phone numbers can be found at http://www.oklegislature.gov. Oklahoma should be a model State for the Nation on the care of these precious people.

With great concern,

Michael L Peck, OD

Enid, OK

Michael McGrath proudly welcomes guests to The Muscle Help Foundation’s annual auction at the Royal Automobile Club, London, in the 1,000th cutting-edge Etac E890 powerchair

Michael McGrath, the inspirational co-founder of The Muscle Help Foundation (MHF) and owner of the 1,000^th Etac E800 powerchair, was joined by bestselling author Jeffrey Archer at the Royal Automobile Club in London, to help raise £11,500 to fund unforgettable experiences for children with Muscular Dystrophy.

MHF delivers amazing and unforgettable experiences in the UK called ‘Muscle Dreams’ for children and young people with the muscle wasting disease, Muscular Dystrophy. Muscular Dystrophy affects over 70,000 people in the UK and varies in complexity with no known cure. Michael himself has Muscular Dystrophy and hence uses a cutting-edge, Scandinavian engineered Etac E890 powerchair for daily mobility and the ability to achieve a standing position. He is a remarkable individual who besides being the driving force behind this family charity, is a highly accomplished motivational speaker. He is also the first and currently only disabled person to have successfully pioneered expeditions to both the North and South Poles and he carried the Paralympic torch during the summer. During the 2012 Games, Michael also successfully led the high profile ‘Games Inspired Muscle Dreams’ (GIMD) experience for 75 beneficiaries that was supported by Etac UK.

Michael McGrath in the 1,000th Etac E890 powerchair (centre left) next to best selling author Jeffrey Archer (centre right), supporters and beneficiaries of The Muscle Help Foundation at the charity’s annual fundraising auction, Royal Automobile Club, London

Jeffrey Archer, the author of well known titles such as Kane and Able was delighted to be auctioneer for this fifth RAC hosted annual fundraising event, which aims to persuade charity supporters to bid on an impressive array of gifts and experiences. These included a personal training session with Richard Callender, the star of ITV1’s ‘The Biggest Loser’, and three bottles of Bollinger Champagne in limited edition gun silencer-style cases. One particular highlight saw Jeffrey assist Olivia, a beneficiary during MHF’s flagship GIMD programme, in securing the prize to appear as a character in Ian Rankin’s next novel. Olivia faced intense competition from another bidder, but a compromise was reached when Jeffrey artfully spoke to Ian on the phone and the Scottish novelist generously agreed to feature both Olivia and the other MHF guest in the book.

Michael concluded: “Jeffrey Archer conducted the evening’s proceedings with great wit, insight and moments of brilliance in helping our family charity achieve a respectable outcome. We would like to personally thank all the supporters who generously donated this evening and we look forward to investing these funds in further unforgettable experiences for young people with Muscular Dystrophy during 2013.”

In a posting on his website, Jeffrey commented: “If you’re looking for a charity to support, this one could do with your help, and I hope they ask me to be their auctioneer next year, because for me it was one of the happiest evenings of 2012.”

http://www.etac.com/en/etaccomuk/?redirect=true

www.musclehelp.com

Adam Yuill seeks a specialist aerobatics company that can help him realise his dream of wing walking for charity. Adam is pictured here with his father, Tony Yuill, in London Docklands preparing to visit the Olympic Park during the ‘Games Inspired Muscle Dream’s Paralympics programme.

Powerchair footballer Adam Yuill, 19, from Newbury in Berkshire is seeking to fulfil a dream by ‘wing walking’ on an aeroplane for charity despite having Duchenne Muscular Dystrophy and being dependent on an Etac Balder powerchair.

Adam is a lively teenager with three older brothers and a sister who is currently studying for a Film Production and Direction Diploma at Newbury College. He currently lives with his parents Tony and Ruth who support and care for him as Adam has Duchenne Muscular Dystrophy which is a life-limiting, muscle wasting condition that severely reduces mobility. To remain mobile Adam uses a cutting edge, Scandinavian Etac Balder powerchair that was kindly donated to him three years ago by the Caudwell Children’s charity. This powerchair allows Adam to move around freely at home and college, travel in the car and achieve multiple positions for improved comfort and easier transfers. He is determined to attempt a ‘wing walk’ to raise funds for this charity to say thanks for the donation and to help fellow disabled individuals, however health and safety issues are preventing him from fulfilling his dream. Adam is desperate to hear from any aerial acrobatic company who could help him achieve his goal.

Adam’s wing walk would also raise funds for The Muscle Help Foundation which organised an all expenses paid trip, to the 2012 Paralympics in London for both him and his father, Tony Yuill. Tony explains: “Adam is really keen to begin planning and organising his charity wing walk however the issue of health and safety has halted his dream. Adam needs to be safe whilst completing this challenge, but surely there is a flying school out there that could help? They would also be assisting with raising desperately needed funds for both Caudwell Children and The Muscle Help Foundation at the same time, we’d be over the moon to hear from them!”

Tony continues: “He has already raised over £1,000 for Caudwell when he completed a tandem sky dive 18 months ago but still feels this is not enough and wants to do more for the charity. He also wants to raise funds for the fantastic Muscle Help Foundation co-founded by the inspirational, Paralympic torch-bearing Michael McGrath who also owns an Etac powerchair. We were so thrilled to be awarded one of the 75 places on the ‘Games Inspired Muscle Dreams’ programme at the Paralympics – it was such a memorable experience that we will never forget. Adam met younger individuals with Muscular Dystrophy during this event and this has encouraged him to help people in a similar situation. We do hope someone can turn his dream into a reality.”

Adam has played powerchair football for two years in the Premiership division and his team, the Aston Villa Rockets, is based in Erdington, Birmingham. He was previously top goal scorer for Gillingham before transferring and his Dad is currently a coach at Villa. Tony is currently helping to push for the sport to become a Paralympic event, which might become a reality at the 2020 Games as there is no competition specifically for powerchair users.

http://www.etac.com/en/etaccomuk/?redirect=true

The redesigned Etac UK website now incorporates the new green colour scheme and several different features such as helpful advice for owners along with condition-specific guidance for selecting the ideal powerchair.

Etac UK Limited, the highly respected powerchair and healthcare product specialist, has announced a brand evolution with the global Etac group signal colour changing from orange to green to strengthen communication of its company values.

Etac has been a world-leading Scandinavian healthcare product specialist for over three decades. Its high levels of personalised care and support are renowned worldwide and its UK division based in Hook, Hampshire, supplies cutting-edge powerchairs such as the Etac E800 series. Etac deployed the colour orange for many years across its marketing communications that reflected values associated with warmth and compassion. However the business has concluded that green now represents more accurately its core ethos in addition to eliminating certain legibility issues that have arisen from the deployment of orange-based material. A green palette had already being utilised for products sold direct to the consumer on mainland Europe with orange as the primary colour for trade communications, the UK being the exception. Hence Etac has concluded that this ‘evolution rather than revolution’ is a logical progression and the new use of green will clearly illustrate the company’s continued approach to innovation whilst maintaining heritage. The first appearance of this new palette in the UK has been deployed to coincide with the launch of the redesigned Etac UK website.

Maria Strandberg, representing Etac’s Commercialisation and Marketing Department based in Kista, Sweden, explains: “As green has previously been predominant in B2C communications within mainland Europe, we feel secure in promoting the use of this colour scheme across all marketing worldwide. As a colour linked with nature, green represents life and vitality and is also associated with balance and harmony. At the same time it is a stable, secure and trustworthy colour - just like Etac. Orange will remain as a complementary colour, however the new identity will be first seen on a commercial scale at Rehacare 2012 and globally across the group’s websites from 10 October.”

Straightforward access to information online is crucial for people with a disability and this has resulted in the development of a new Etac UK website to coincide with the launch of the green colour scheme. Ian Carter, UK Managing Director explains: “Specialist Etac powerchairs are highly respected throughout the UK and are synonymous with reliability, functionality and comfort. To clearly communicate these benefits online it was essential for us to overhaul the UK website and improve social media activity which was highlighted to us by our marketing agency – the iDIS Creative Marketing Partnership. Since being appointed, iDIS has worked closely with the Etac web team based in Sweden so that a more diverse and ‘search engine optimised’ site was delivered, whilst conforming to the latest brand guidelines. Even though, as with all websites, further developments and enhancements will now begin, the content and architecture of this URL is a vast improvement on the previous version and we thank iDIS for all of its support. We now intend to develop more robust social media platforms so that Etac UK can engage more fluidly with end users nationally.”

Navigation around the new Etac UK website is easy and straightforward. The complete site map has been restructured for simple passage and headlines carefully considered for faster recognition and access to relevant information. Etac UK has begun focusing its marketing communications on end-user age and condition, rather than product specifics, which can also be seen in this new site. Consequently, the new Etac UK website includes a section entitled ‘Condition Specific’ which provides lists of accessories and features which are commonly prescribed for certain types of user. This assists potential owners when discussing specific needs with Etac UK so that the ideal powerchair design can be determined more efficiently. There is also a practical advice section that contains essential tips from ‘travelling in a powerchair’ through to ‘cleaning’ and how the initial assessment process takes place.

The timing of this new green Etac identity and website launch in the UK coincides with increased interest and orders for the E800 series of powerchairs. Ian Carter, concludes: “Here at Etac UK we are always proud to deliver a unique combination of highly respected ergonomic products with a strong Scandinavian heritage. This brand evolution reflects a clear message to the UK consumer market in terms of our continual powerchair innovation with the E800 series now providing world-class functionality and reliability. The 1,000th E800 series powerchair with sit-to-stand capability, specifically an E890, has just been selected by the inspirational Muscle Help Foundation CEO Michael McGrath, who demonstrated its remarkable capabilities whilst carrying the Paralympic Torch and leading a Muscular Dystrophy charity initiative at the Games. This is a prime example of why the Etac E800 series is first choice for many end users and its cutting edge design is now reiterated by the use of fresh green within associated Etac branding.”

http://www.etac.com/en/etaccomuk/?redirect=true

www.balder.co.uk

http://www.Disabilinet.com is the new and unique social media site for people with disabilities

Introduction

Disabilinet.com is a social networking service and website launched in June 2012 specifically for disabled people. Based on a similar concept to Facebook, Disabilinet is a fledgling site with 391 active disabled users as of September 2012 sharing information and content regarding experiences, opinions and condition-specific advice across the Internet. The purpose of Disabilinet is however different to Facebook as it has been established so that disabled people can form new friendships as opposed to managing existing relationships online. Unique Users must register before using the site with basic personal details after which they can create a personalised identity that includes an Avatar, personality profile, birthdate and email address for direct, private messages. Once this personal profile is established, subscribers can add other users as friends and begin exchanging messages, pictures, videos, music and blog posts. Additionally, users may set up and join common-interest user groups and add events to a calendar. A HTML5 mobile version of Disabilinet is available for smart phones and tablets with compatibility for devices such as iPhone and iPad.

History and background

The successful entrepreneur Mike Simmonds founded Disabilinet and is based in Whitstable, Kent, (United Kingdom). Mike has extensive experience in the field of mobility products and helping to meet the needs of disabled people. Mike was previously the Managing Director of Q’Straint Europe, a global wheelchair and occupant restraint specialist that supplies safety products to the commercial bus, coach and rail sectors. Whilst at Q’Straint (trading as Giram UK Limited) for 18 years, Mike was responsible for growing the business considerably across 50 countries along with helping to achieve Investors in People and ISO9001 accreditation in 2005, meeting industry demands of European Whole Vehicle Type Approval and The Queen’s Award for Enterprise: International Trade (Export) in 2007. In addition to currently leading the development of Disabilinet and its associated charitable Foundation, Mike is the Managing Director of Disabilinet Technologies Limited and Roxana Investments Limited.

The idea for the Disabilinet platform was the result of Mike’s continuing experiences of meeting inspirational disabled individuals across the world. He researched current online community sites for disabled people and concluded there was a need for a different approach. Hence Disabilinet.com was specifically designed for people with disabilities so they could freely communicate with one another and share experiences in a safe and secure environment. Disabilinet.com is different to social media sites such as Facebook primarily through its content and user base demographics so that relevant news, views and topics relevant to disabled people can be quickly accessed. Disabilinet.com reflects a new genre of social media sites that engage specific interests and defined user groups. Mike discovered that there was a real need to share images, advice and viewpoints as many disabled people found it difficult to discover the best way to improve well-being or access credible information. Whether people have become recently disabled, lived with restricted mobility or had a medical condition such as Spinal Injury, Muscular Dystrophy, Motor Neurone Disease, Cerebal Palsy, Spinal Muscular Atrophy etc. they are now accessing the community site to exchange information.

Mike currently manages a small team of three specialists based internationally who are responsible for programming and maintenance, Public Relations and developing Social Media exposure through the micro-blogging site Twitter and other online sites such as the Disabled Living Foundation Youreable forums. A General Manager will be appointed shortly to direct the website on a part-time basis which is now live and has been designed with web accessibility in mind. It will be rolled out to all counties globally with residents who predominantly speak English with the intention of becoming the first choice online community hub for disabled people around the world.

Website features

Disabilinet.com is a content diverse community website which encompasses many different methods by which fellow subscribers can engage. The home page provides quick access to all areas of the website with designated fields which include –

• the most recent YouTube, Hulu and Vimeo video posted by subscribers
• uploaded photographs or links to Flickr,
• the latest general activity on the site such as new member notification and micro blog posts
• blogs and forthcoming events
• access to open forums and designated groups
• current member names and Avatars
• links to the subscribers personal Inbox, friends and settings
• Facebook users who ‘like’ Disabilinet
• The Disabilinews channel from the Disabilinews Reporter

Navigation for visually impaired visitors is assisted by a ‘Size of Character’ option that will increase or reduce the point size of typefaces on the screen.  Abundant links allow all content to be commented upon, liked and shared across Facebook, Twitter, Google+ and Stumble Upon. In addition to these, Disabilinet allows subscribers to engage via a ‘live chat’ box similar to real-time Skype messaging and fellow members who are online can choose to be highlighted in a ‘Members Online’ window. RSS feeds are also available.

The Disabilinet member, Disabilinews Reporter regularly posts news and events from the mobility and disability sector within a designated channel that is accessed from the main navigation bar. This news stream provides useful mobility product information and initiatives, end user stories and event updates for all Disabilinet subscribers. Techincal support links are available at the foot of the home page and free Disabilinet banners and website badges are available for all subscribers to download and position on external sites.

The Disabilinet Foundation

The Disabilinet Foundation charity has been established following the launch of this associated community social media site with the intention of donating specialist assistance and mobility equipment to disabled individuals. When user numbers hit a critical level, the site will introduce a commercial advertising programme whereby a percentage of revenue generated from promotional banners, skyscrapers, MPUs etc. will be converted into funds to support disabled people.

User profiles

Current users of Disabilinet as of September 2012 consist of a varied mix of disabled individuals from global locations. Of note in these early stages, there has been an influx of members from the United States with Multiple Sclerosis and many mobility scooter users. In addition to these, certain users in the public eye have joined including Julie Fernandez, the British Actress famed for appearing in The Office UK TV show and publicised Steve Tarrant who survived being hit by an F1 racing car in 2000 at the Goodwood Festival of Speed. Steve Tarrant is also famed for successfully achieved a new World Record on 27 June 2012 at The Mobility Roadshow, East of England Showground, Peterborough where he drove a TGA mobility scooter the further distance ever in 24 hours around the Peterborough Panthers Speedway track. This achievement was included in Disabilinews on the Disabilinet website along with his official Olympic and Paralympic 2012 sailing medal bearing duties during August and September at Weymouth.

Other subscribers include the online disabled information service Ask Jules and the charity Transport For All who campaign for improved accessibility for disabled passengers across London.

Disabled social media statistics

Taking the UK for example, the following figures demonstrate why a social media platform specifically for disabled people will be a success. 30% of internet users are aged 55+¹, 70% of households have internet access², 60% of internet surfers access the web daily and of the 8.6 million people registered disabled, 50% of them regularly use the web³. This is combined with the huge following of leading social media sites such as Twitter (3 million ‘Tweets’ per day worldwide, activity currently rising by 2,565%⁴) and Facebook (500 million unique users worldwide⁵), which clearly shows the need for Disabilinet.com. There are also new initiatives such as GO ON UK (formerly RaceOnline 2012) supported by British Telecom, Age UK and the Royal Mail that are actively encouraging disabled people who have not used the Internet before to discover the unlimited benefits it can deliver.

Disabilinet is Social Media site – what does this mean?

In essence Social Media is what it says it is – ‘Social’ – informal, consumer chat, and ‘Media’ – a form of communication, in this case via the Internet. In more scientific terms, Andreas Kaplan and Michael Haenlein define Social Media as ‘a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0, and that allow the creation and exchange of user-generated content.’⁶ Businesses also refer to Social Media as user-generated content (UGC) or consumer-generated media (CGM). The popularity of Social Media is driven by today’s era of the ‘Attention Age’ whereby people post their views, actions or requests without prompting. Social Media can take a variety of different forms which include – Instant messaging, Internet forums, Microblogging, Picture-sharing, Podcasts, Social blogs, Social bookmarking, Virtual communities, Virtual game worlds, Vlogs (video blogging), Weblogs and Wikis. Examples of Microblogging include – FMyLife, Jaiku, Plurk, Tumblr and Twitter, Social bookmarking (or social tagging) – Delicious, Google Reader and StumbleUpon, and Video sharing – Sevenload, Viddler, Vimeo and YouTube. These sites incorporate fluid sharing of messages and images, commonly in real-time across a pre-determined social network and offer the benefits of virality.

Join Disabilinet for free today at: www.disabilinet.com

Michael McGrath with the Paralympic Torch which he carried to Hackney Town Hall, London, on 29 August 2012 whilst in a standing position thanks to his new Scandinavian Etac E890 powerchair, which is the 1,000th production model built in Norway.

Co-founder of The Muscle Help Foundation and 1,000th Etac powerchair owner, Michael McGrath, is delighted with the success of the innovative programme he has just led, taking 75 boys and girls suffering with Muscular Dystrophy (MD) to the Paralympic Games, where they were able to watch the incredible events and meet some of their athlete heroes and heroines.

Michael, who also took part in the Paralympic torch relay two weeks ago, has been described as an inspiration. After himself being diagnosed with the muscle wasting disease Muscular Dystrophy at the age of 18, he has consistently overcome incredible odds to achieve extraordinary goals throughout his life.

The Muscle Help Foundation is a UK registered family charity that delivers ‘Muscle Dreams’, amazing and unforgettable experiences to children and young people in the UK afflicted by Muscular Dystrophy (there are some 75,000 sufferers in this country).

Many of the ‘Games Inspired Muscle Dreams’ beneficiaries perform a ‘Muscle Salute’ on day one of the programme outside the Paralympic stadium. Michael McGrath, co-founder of the charity and ‘Chief Muscle Warrior’ is pictured in his new Etac E890 powerchair which is the 1,000th production model (front row, middle, with sunglasses).

Last week saw the culmination of nearly 24 months of planning with the charity’s flagship 2012 ‘Games Inspired Muscle Dreams’ programme coming to fruition and, in the process, changing the lives of 75 young beneficiaries who, together with their families and carers, were able to witness the power of sport and human endeavour at the London 2012 Paralympic Games.

Over a period of six days, starting on Friday, 31^st August, groups of disabled children and young people (boys and girls) were accommodated at the charity’s host hotel for one night at the Radisson Blu Edwardian New Providence in Canary Wharf and, the following day, they went into the Olympic Park to watch a range of exciting Paralympic sports.

The world famous Paralympian Dame Tanni Grey-Thompson is pictured with the ‘Games Inspired Muscle Dreams’ beneficiaries on day two of the programmed in the Paralympic Park.

Highlights of the week included the children being lucky enough to meet celebrated Paralympian, Dame Tanni Grey-Thompson (pictured next to Michael McGrath at the front), as well as Mayor Boris Johnson and some of the athletes taking part in the Games.

The children and their families were thrilled to be able to meet and talk to the athletes and many have been inspired by their achievements.

Tina Baker, mother of Hanna, who has SMA (spinal muscular atrophy), said after their time spent watching the Games: “Thank you all so much for letting us join you for a fantastic weekend. We had an amazing time, it was so very well organised that we didn’t have to worry about anything. We loved the personal touches that made it a very special event that we will never forget. The athletes were all inspirational and we thoroughly enjoyed being in the atmosphere of the Olympic Park. It would never have been possible without you and all your dedication and hard work.”

Karen Wallbridge wrote to thank The Muscle Help Foundation on behalf of her 14-year-old son James: ‘Thank you for inviting James to such a wonderful event. He is absolutely buzzing and has come back home with a new-found confidence. The last two days have impacted him on so many levels. Until now, he has found it incredibly difficult to accept his disability, feeling embarrassed to be in his power chair among his school friends. For years he has been the only one in his first and middle school to be affected by Muscular Dystrophy.

“[At the Paralympics], he met others his own age in the same situation and he was able to see that they have the same, or more difficult, hurdles to deal with and, more importantly, that nothing should stop him from having a go at whatever he wants to do.

“Of course, these messages have always been given to him verbally by us, but the stories behind the Paralympics and the fact that he has physically witnessed the incredible swimmers and rugby players who have achieved their dream has been completely inspirational to him.

“He came back wanting to try out wheelchair rugby and he wants to look at other wheelchair sports. David (his brother, who accompanied him as his carer) said the whole thing was absolutely fantastic. He felt they had been thoroughly spoilt and said it was something he would never forget. This was something that not only lifted James but also his family. The long term effect this event will have is immeasurable and for that we cannot thank you enough.”

The Games Inspired Muscle Dreams programme was endorsed by Lord Coe, Chair of the London Organising Committee of the Olympic Games and Paralympic Games (LOCOG), who said: “Games Inspired Muscle Dreams is encouraging young people with Muscular Dystrophy to fulfil their potential. I am proud that, with the help of partners such as The Muscle Help Foundation, we are delivering our vision to use the power of the Olympic Games and Paralympic Games to make positive life changes for young people in the UK.”

Jonathan Edwards, Deputy Chair of the London 2012 Nations and Regions group, also said of the programme: “The Inspire programme is an Olympic and Paralympic first and projects like the ‘Games Inspired Muscle Dreams’ will go down in the history books as one of the fantastic projects that used the power of the 2012 Games to inspire a generation.”

Michael McGrath said, “I’m delighted that our vision for the Games Inspired Muscle Dreams programme, conceived just after London won the bid, has been absolutely realised. 75 children witnessed and were inspired by the achievements of many Paralympic athletes; some 40 volunteers willingly gave of themselves in assisting the charity and I know that, for some, engagement with our families has had a deep positive impact. As for my core team, they’ve been awesome!, Together, we’ve changed some lives! This is one of those times when in the years to come, we’ll look back and say, we made a difference, we changed some lives”!

Through a series of national and regional media interviews during the past couple of weeks, this programme has also acted as a platform to raise more awareness about muscular dystrophy, a muscle wasting disease that robs sufferers of their independence, their mobility and finally, for those with the most severe form, their lives.

 It was a massive honour to have carried the Paralympic flame: when my new Etac 890 powerchair raised me up into the standing position, I was overcome as I hadn’t stood for over three years. I recall thrusting my left arm upwards and outwards and looking directly into the flame – I carried it as a symbol of hope, strength and joy for all of our charity’s Muscle Dream beneficiaries, past, present and future, as well as their families. I will never ever forget that moment!”

Michael McGrath with the Paralympic Torch which he carried to Hackney Town Hall, London, on 29 August 2012 whilst in a standing position thanks to his new Scandinavian Etac E890 powerchair, which is the 1,000th production model built in Norway.

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To keep up-to-date with all the charity news, follow The Muscle Help Foundation on Twitter at:  https://twitter.com/musclewarrior,      

LinkedIn: http://www.linkedin.com/company/2323415?trk=tyah

and on Facebook: https://www.facebook.com/TheMuscleHelpFoundation. 

Many of the ‘Games Inspired Muscle Dreams’ beneficiaries perform a ‘Muscle Salute’ on day one of the programme outside the Paralympic stadium. Michael McGrath, co-founder of the charity and ‘Chief Muscle Warrior’ is pictured in his new Etac E890 powerchair which is the 1,000th production model (front row, middle, with sunglasses).

Etac UK Limited, the highly respected powerchair specialist, was proud to support the ‘Games Inspired Muscle Dreams’ charity programme at the 2012 Paralympic Games which delivered a once in a lifetime experience for 75 young people with Muscular Dystrophy (30 August – 9 September).

The Muscle Help Foundation delivers amazing and unforgettable experiences in the UK called Muscle Dreams for children and young people afflicted by the muscle wasting disease, Muscular Dystrophy. Muscular Dystrophy affects over 70,000 people in the UK and varies in complexity with no known cure. As part of this ongoing mission, this innovative Paralympic related project has been in development for over two years and was conceptualised by the Muscle Help Foundation’s inspirational CEO Michael McGrath. Michael himself has Muscular Dystrophy — he has been an Etac Balder powerchair owner for several years and is a remarkable individual who besides being the driving force behind this family charity is a highly accomplished motivational speaker. He is also the first and currently only disabled person to have successfully led expeditions to both the North and South Poles and carried the Paralympic torch from the London Borough of Waltham Forest on 29 August at 19:14.

Michael approached the UK division of the Scandinavian powerchair supplier Etac, to ascertain whether support could be given to this unique programme in terms of technical and marketing resources. Ian Carter, Etac UK Managing Director was delighted to provide assistance as he explains: “We have had a close relationship with Michael for many years now as he has been loyal to the Etac brand. When he explained his intentions to take 75 Muscle Dream beneficiaries to the Paralympics, Etac UK immediately agreed to provide a powerchair product specialist to help with technical issues and its Public Relations consultant to assist with generating press awareness. We believe the work of the Muscle Help Foundation is essential for empowering and inspiring young individuals with Muscular Dystrophy and regard this programme as one of the key achievements inspired by the 2012 Paralympic Games.”

‘Games Inspired Muscle Dreams’ was granted the official ‘Inspired by London 2012′ mark, which is indicative of the value placed on the programme by the Paralympic Games organisers. Amongst others, Lord Coe, Chair of LOCOG together with Charity patron Lorraine Kelly OBE as well as the Deputy Chair of the London 2012 Nations and Regions Group, Jonathan Edwards, endorsed the event whilst businesses including Standard Life, Zibrant, PwC and BI Worldwide provided sponsorship.

Over a period of nine days, five groups of disabled boys, girls and their families from across the UK, were fully assisted, accommodated and transported to the Olympic Park to watch several Paralympic sports and met athletes face-to-face.

The Paralympics official broadcaster Channel 4 invited Michael and one of his beneficiaries to appear on the Paralympic Breakfast Show. Michael ensured that every one of his beneficiaries left with unforgettable memories which will inspire and motivate them for years to come.

Michael concludes: “I would like to thank Etac for supplying me with such a fantastic Balder powerchair all these years which has helped me achieve so much and their recent offer of support for this event. My aim is for our charity’s engagement with the Paralympics to have been utterly inspirational and truly enriching for our Muscle Dream beneficiaries but also act as a platform to raise more awareness about Muscular Dystrophy. I was especially keen to focus on making sure that each one of our recipients got the opportunity to witness the power of sport, so much so that they themselves become ‘champions of inspiration’ in sharing what they’ve seen with their families, schools and local communities. We have changed some lives!”

‘Games Inspired Muscle Dreams’ – a uniquely compelling event at the London 2012 Paralympic Games supported by Etac UK.

For details or to donate: http://www.musclehelp.com/

http://www.etac.com/en/etaccomuk/?redirect=true

Jordan, Spencer and Gianluca with Etac powerchair owner Michael McGrath (2nd from right) at the Olympic Park on the pilot day in April 2011.

Etac UK Limited, the highly respected powerchair specialist, is proud to announce that it will be working to support the ‘Games Inspired Muscle Dreams’ charity programme at the 2012 Paralympic Games which will deliver a once in a lifetime experience for 75 young people with Muscular Dystrophy.

The Muscle Help Foundation delivers amazing and unforgettable experiences in the UK called Muscle Dreams for children and young people afflicted by the muscle wasting disease, Muscular Dystrophy. Muscular Dystrophy affects over 70,000 people in the UK and varies in complexity with no known cure. As part of this ongoing mission, this innovative Paralympic related project has been in development for over two years and was conceptualised by the Muscle Help Foundation’s inspirational CEO Michael McGrath. Michael himself has Muscular Dystrophy – he has been an Etac Balder powerchair owner for several years and is a remarkable individual who besides being the driving force behind this family charity is a highly accomplished motivational speaker. He is also the first and currently only disabled person to have successfully led expeditions to both the North and South Poles.

Michael approached the UK division of the Scandinavian powerchair supplier Etac, to ascertain whether support could be given to this unique programme in terms of technical and marketing resources. Ian Carter, Etac UK Managing Director was delighted to provide assistance as he explains: “We have had a close relationship with Michael for many years now as he has been loyal to the Etac brand. When he explained his intentions to take 75 Muscle Dream beneficiaries to the Paralympics, Etac UK immediately agreed to provide a powerchair product specialist to help with technical issues and its Public Relations consultant to assist with generating press awareness. We believe the work of the Muscle Help Foundation is essential for empowering and inspiring young individuals with Muscular Dystrophy and regard this programme as one of the key achievements inspired by the 2012 Paralympic Games.”

‘Games Inspired Muscle Dreams’ has been granted the official ‘Inspired by London 2012’ mark, which is indicative of the value placed on the programme by the Paralympic Games organisers. Amongst others, Lord Coe, Chair of LOCOG together with Charity patron Lorraine Kelly OBE as well as the Deputy Chair of the London 2012 Nations and Regions Group, Jonathan Edwards, have endorsed the event whilst businesses including Standard Life, Zibrant, PwC and BI Worldwide are providing sponsorship.

Over a period of six days, five groups of disabled boys, girls and their families from across the UK, will be fully assisted, accommodated and transported to the Olympic Park to watch several Paralympic sports and hopefully meet some athletes face-to-face. The Paralympics official broadcaster Channel 4 has invited Michael and some of his beneficiaries to appear on the Paralympic Breakfast Show. Michael is aiming to ensure that every one of his beneficiaries leave with unforgettable memories which will inspire and motivate them for years to come. Michael concludes: “I would like to thank Etac for supplying me with such a fantastic Balder powerchair all these years which has helped me achieve so much and their recent offer of support for this event. My aim is for our charity’s engagement with the Paralympics to be utterly inspirational and truly enriching for our Muscle Dream beneficiaries but also act as a platform to raise more awareness about Muscular Dystrophy. I’m especially keen to focus on making sure that each one of our recipients get the opportunity to witness the power of sport, so much so that they themselves become ‘champions of inspiration’ in sharing what they’ve seen with their families, schools and local communities. We’re going to change some lives!”

‘Games Inspired Muscle Dreams’ – a uniquely compelling event at the London 2012 Paralympic Games supported by Etac UK. For details or to donate: www.musclehelp.com

http://www.etac.com/en/etaccomuk/?redirect=true

Etac Balder F280 powerchair owner Dr. Huw Thomas, 64 from Penrhyncoch near Aberystwyth in Wales, has jointly won the Stelios Award for Disabled Entrepreneur of the Year 2011

Etac Balder F280 powerchair owner Dr. Huw Thomas, 64 from Penrhyncoch near Aberystwyth in Wales, has jointly won the Stelios Award for Disabled Entrepreneur of the Year 2011 with another separate entrepreneur Rob Smith following a glamorous ceremony held at the Millennium Gloucester Hotel Kensington, London on 14 December.

Sir Stelios Haji-Ioannou – the serial entrepreneur best known for founding EasyJet PLC at the age of 28, established the Stelios Award for Disabled Entrepreneur of the Year in 2007 and the Stelios Philanthropic Foundation in 2009. Now in its fifth year, this awards programme runs in association with the Leonard Cheshire Disability charity, which supports thousands of disabled people in the UK and throughout 50 other countries worldwide. As Sir Stelios explained at the launch of the award scheme: “I am very passionate about encouraging an enterprising spirit throughout British culture. Helping to remove the barriers that disabled people face in business is an important part of this. That is why I was keen to establish an award which gives disabled people an opportunity to showcase their ability rather than have them negatively judged by their disability.”

Dr. Huw Thomas who has Muscular Dystrophy (MD) and uses an Etac Balder F280 powerchair, established Promove UK in 2007 with his business partner Dana Thomas and this recent prestigious accolade reflects Huw’s hard work and dedication over the past several years. With a manufacturing facility based near Merthyr Tydfil in Wales, Promove supplies specialist slings used to rescue, evacuate and transfer injured and less able people as Huw explains: “After completing my PhD and working in plant genetics for over 40 years, I decided to take early retirement at 56. However I can honestly say I ‘failed’ at this change in lifestyle and decided that I needed a new challenge! As I have severely restricted movement in both arms, I have experienced first-hand the issues associated with transfers in and out of my Balder powerchair for many years and knew a better solution needed to be conceived. My sling concept was originated back in 2005 when flight attendants were having issues with moving me into an airline seat. From my initial sketches and designs through to CE testing and finally establishing a production line, I was determined to deliver the ProMove sling to market even though my condition for some would be seen as very limiting. Living with MD is so much easier with my Balder powerchair from Etac as the three models I have owned over the past 12 years have always delivered functionality and comfort way beyond any other powerchair available today. I was one of the first people to purchase a Balder powerchair in the UK and I would recommend them to everyone with a condition such as MD.”

Huw continues: “I do face challenges every day with running my business however living with a disability has its advantages for ProMove as it provides invaluable experience and insight. I am pleased to see that this perspective has been recognized by the award scheme and my joint £50,000 prize will now be re-invested into the business so we can expand. It was a wonderful occasion; in addition to the excitement of winning the award, meeting Stelios himself and all the glitterati at the reception was quite an experience. I was able to mingle among the 200 guests in my Balder wheelchair in the raised position which made such a huge difference, being able to speak to people at eye level. The wheelchair generated almost as much interest as I did as the award winner. In addition, I would like to thank Etac for providing me with several fantastic Balder powerchairs over the years as I’m sure without them, I would not have been able to achieve all that I have, culminating in this recent award.”

Sir Stelios concluded: “I would like to congratulate Rob and Huw on running successful businesses and displaying the drive, creativity and determination to reach the top and really fly.” The Etac UK Managing Director, Ian Carter, reiterated this sentiment: “We are thrilled for Huw as he fully deserves this recognition. As one of our first customers in the UK, it is also pleasing to see how his current Etac powerchair continues to assist him in achieving so much and we wish him well with his business expansion.”

http://www.etac.com/en/etaccomuk/?redirect=true

Matt Hampson with his Etac Balder F280 powerchair

Etac Balder powerchair owner Matt Hampson, ex-England U21 tight-head prop, has recently launched his autobiographical book ‘Engage’ written with Paul Kimmage which tells Matt’s story before and after his life changing accident leaving him paralysed from the neck down, unable to breath without the aid of a ventilator.

High profile Matt Hampson nicknamed ‘Hambo’, 26 from Leicestershire, is a remarkable and inspirational individual who was a rising star in English rugby. Following his exceptional rugby performances at Syston RFC, he was selected by the Leicester Tigers Academy and continued to build upon his sporting prowess whilst juggling educational commitments at Queen Elizabeth College. During this time he trained alongside the likes of Austin Healey, Neil Back, Martin Cory and England World Cup winning Captain, Martin Johnson. He then progressed to playing for his country and achieved several under 19 caps and eventually became the first choice prop for the under 21’s alongside other fellow stars such as Toby Flood, James Haskell and Ben Foden. However during a routine training session on the 15th of March 2005, Matt sustained a neck injury following a scrum collapse that would change his life forever. Matt explains: “It was a cold grey day at a Northampton training ground and we were training hard as normal. During the session we set up a scrum and were given the command to ‘engage’. The scrum came together however both teams collapsed and I took the full force of both packs on my neck, which left me unable to breath or feel my arms or legs. Following this freak accident, I spent over 17 months recovering in Stoke Mandeville Hospital before I was well enough to return home as amongst many other issues I had to beat Clostridium difficile and confirm my ability to swallow. Without my family and friends I would never have made it”.

Now six and half years since his accident, Matt has rebuilt his life and is busy with many worthwhile causes which include his charity work, writing for Rugby World Magazine and coaching at Oakham school. Throughout all of his day-to-day work he is fully dependent on a team of ten carers and his Etac Balder F280 powerchair, which delivers mobility, comfort and the ability to travel in an accessible vehicle via its Automatic tie-down system. Matt controls his powerchair with a sensitive mini-joystick operated by his chin and his ventilator is neatly attached to the rear of the seat. The Etac Balder F280 is a Scandinavian-built, hi-tech electric powerchair that leads the market place in terms of functionality, reliability and flexibility whilst providing superb manoeuvrability through front wheel drive and a battery range of up to 34km on one charge.

Matt continues: “The Matt Hampson Foundation which we set up in early 2011 takes up the majority of my time however I am able to continue my passion for rugby through my coaching which i feel is the next best thing to playing. My Etac Balder has really good traction and power, hence I can comfortably drive onto muddy training pitches without the worry of getting stuck which really helps with being close to the action. Off the field, my foundation is committed to inspiring and supporting young people seriously injured through sport and I am glad to say we have already raised a substantial amount of money. In addition to the numerous high profile charity events and dinners we organise throughout the year, my new book ‘Engage’ and patrons such as my old team mate Martin Johnson, are helping to raise awareness and funds for injured young sportsmen and women. Writing the book with Paul over the past four years has been emotionally draining for me however the response I have received from people since the launch has been absolutely amazing. My recent interviews on national television and the serialisation of my new book in the Sunday Times has really helped raise awareness of my foundation. Knowing I have the support of so many people locally and nationally really helps motivate me on a daily basis and I fully believe in remaining positive. My rugby training taught me respect, discipline and control, which has given me the mental strength to tackle my new life and help as many people as possible along the way.”

Matt concludes: “My Etac Balder powerchair is a fantastic piece of kit and I am keen to help Etac with product development in the future, as I am always willing to pass on my experiences and knowledge that i have gained through living the last 6 and a half years of my life. Meeting people through my Foundation with similar disabilities to myself, inspires me and helps keep my life moving forward. I always will feel proud and privileged to have played rugby alongside so many stars who currently play for our country.”

Ian Carter, Etac Managing Director added: “Matt is a truly exceptional character and to show this continued grit and determination, which is clearly demonstrated in his book, is very inspiring. We wish him every success with his charity work and feel sure that his Etac Balder F280 will continue to meet his mobility needs now and in the future.”

The Matt Hampson Foundation can be found at: www.matthampsonfoundation.org

http://www.etac.com/en/etaccomuk/?redirect=true

Picture caption: The Etac Automatic Tie-down System is fully crash-tested and delivers safe, drive-from-powerchair capability

Etac UK Limited is delighted to announce it will be demonstrating the Etac Automatic Tie-down System, which delivers drive-from-wheelchair and upfront passenger capabilities, at the third and final Get Going Live! event on 11 August 2012, Transport Research Laboratory (TRL), Wokingham, Berkshire.

Get Going Live! is organised by two national charities – Disabled Motoring UK and the organisers of the Mobility Roadshow – Mobility Choice. The final, family-friendly event at TRL will provide the unique opportunity for young, disabled individuals to discover how they can get driving in wheelchair friendly vehicles and experience test drives in the latest adapted cars. Etac UK drive-from-wheelchair specialists will be on hand throughout the day to provide expert advice and to demonstrate the capabilities of the Etac Automatic Tie-down System.

Unique and fully compatible with the E800 series, the Etac Automatic Tie-down System delivers world-leading safety for wheelchair users when travelling in adapted vehicles either as passengers or drivers. Successfully tested to the ISO 7176-19 standard by the UK Road Transport Laboratory, the Etac Automatic Tie-down System is different to all wheelchair docking systems as it is electrically operated by the powerchair and not the vehicle battery. This eliminates the need for complex installation and additional wiring through the adapted vehicle floor well, which could affect resale value. The system comprises of an anchor point bolted to the floor, which is easy to access with a wide tapered channel and a locking bolt mechanism attached to the underside of the Etac powerchair. As the user manoeuvres into the docking station, the mechanism automatically locks and the powerchair and occupant are then fully secure for onward transit.

The Etac Automatic Tie-down System is suitable for either drivers or passengers who use a powerchair. If a user prefers to have the option to alternate between positions, the Etac Undercarriage System can be installed onto certain OEM seats so that vehicle configuration remains flexible. Ian Carter, Etac UK Managing Director concludes: “The team and I are proud to be demonstrating such an impressive solution at the final Get Going Live! event this year. There appears to be more interest this year in personal accessible transport and we believe the Etac Automatic Tie-down System represents one of the best drive-from-powerchair configurations on the market today.”

In addition to the Etac Automatic Tie-down System, a selection of Etac powerchairs including the Balder range will be showcased at Get Going Live! The Balder range is available with its own Automatic Tie-down system which will be demonstrated on the Etac UK stand along with details regarding the new five-year warranty package on selected E800 series models.

The free Get Going Live! events are to be held 10am–5pm on:
Sat 14 July – Donnington Park Launch Pad, Derbyshire, Sat 28 July – Yorkshire Event Centre, Harrogate
Sat 11 Aug – TRL Wokingham, Berkshire

To register for free, visit: www.getgoingnow.org

www.etacuk.com

Susie Rogers-Hartley is an Etac Balder F280 powerchair owner and prolific Para-equestrian event winner from Oxfordshire. Despite having a spinal injury which restricts use of her legs, she has won numerous competitions and regularly competes against able-bodied and disabled riders with the help of her Etac powerchair.

Susie Rogers-Hartley is an Etac Balder F280 powerchair owner and prolific Para-equestrian event winner from Oxfordshire. Despite having a spinal injury which restricts use of her legs, she has won numerous competitions and regularly competes against able-bodied and disabled riders with the help of her Etac powerchair.

Susie is currently based at Alden Equicentre near Upton in Oxfordshire which is one of the official Olympic Equestrian Training Camps. Susie has successfully qualified for the 2012 Paralympics with her 10 year old Irish horse ‘Shamus’ and may ride for Team Hong Kong if she can prove her dual nationality.

Susie started riding at the age of four when she attended St. Mary’s private school in Hasting which had a riding school nearby and was famed for teaching celebrities such as Joanna Lumley. She quickly progressed to entering competitions and became an extremely competent and experienced rider through her teenage years and twenties.

As global travel had always excited her, she decided to join the British Royal Navy in 1998 as it offered Susie the opportunity for a rewarding career stationed across the world. However during a routine training exercise on a physical assault course in 2002, she sustained a severe back injury that left her without mobility from the waist down and needing the permanent use of a wheelchair to remain mobile.

Susie explains: I had always enjoyed a very active life from running marathons to my beloved horse riding so as you can imagine this type of injury was devastating. I was discharged from the Navy and then had to look at rebuilding my life however I found it extremely tough. I lost all my confidence, became introvert and couldn’t even steer a wheelchair in a straight line. Nevertheless my perspective on life was to dramatically change in 2003, when I was given the opportunity to attend a Back-up Trust multi-activity course on Exmoor which included horse riding for the less able.”

Susie continues: “This course included hacks in association with the RDA (Riding for the Disabled Association) which allowed me to once more sit in the saddle which was totally amazing. Being able to see the world from up high made me wake up from a bad dream, it was a true turning point in my rehabilitation.

As time went on, I was also lucky enough to be able to buy my own horse, William, which then really allowed me to begin training, jumping and competing again on a regular basis. There was however still one major issue to be resolved – my mobility. I was struggling to access the livery, moving around the yard took too much time and mounting my horse was very difficult. This was all to change in 2008 with the purchase of my new Etac Balder F280 powerchair, which met all my day-to-day mobility needs at the stables and during competitions.

This was a memorable year for me as my newfound mobility also coincided with the purchase of my new horse Shamus from Stephen Hendry of Kent Horse Producers. My Etac powerchair is so robust and sturdy and even though it is not a specialist off-road mobility vehicle, I can still easily drive around fields and over rough rural terrain when attending to Shamus. It delivers excellent range through high capacity batteries and the fact that the sit raises so high, I can lift myself up to a position which allows easy mounting onto Shamus. I’d be lost without my F280 as it provides superb manoeuvrability and flexibility around the stables when I am cleaning, feeding and mucking out whilst the tyre tread delivers excellent traction.

I previously owned another brand of powerchair however it’s functionality was not varied enough for my lifestyle and the F280 fits practically in my horsebox when travelling to competitions.”

Susie’s current accolades include winning the RDA National Championships (GRADE I – 70cm) last year, British Novice 70-80cm classes 2010 and finishing in the top five at La Baule and Vimeroy, France. Susie hopes that showjumping will have become a Paralympic sport by Rio 2016 in addition to dressage. Susie concludes: “Shamus and I always enjoy training hard and even though we have achieved so much together, thanks in part to my Etac powerchair, winning an Paralympic showjumping medal would be the ultimate dream.”

http://www.etac.com/en/etaccomuk/?redirect=true

The Etac Automatic Tie-down System is fully crash-tested and delivers safe drive-from-wheelchair capabilities.

On Stand E4 at The Mobility Roadshow 2012 (Peterborough Arena, 21–23 June), Etac UK Limited demonstrated the Etac Automatic Tie-down System this year as it delivers world-class drive-from-wheelchair and upfront passenger capabilities.

Unique and fully compatible with the E800 series and Balder powerchairs from Etac, the Etac Automatic Tie-down System delivers world-leading safety for wheelchair users when travelling in adapted vehicles either as passengers or drivers. Successfully tested to the ISO 7176-19 standard by the UK Road Transport Laboratory, the Etac Automatic Tie-down System is different to all wheelchair-docking systems as the powerchair and not the vehicle battery electrically operate it. This eliminates the need for complex installation and additional wiring through the adapted vehicle floor well, which could affect resale value. The system comprises of an anchor collar bolted to the floor, which is easy to access with a wide tapered channel and a locking bolt mechanism attached to the underside of the Etac powerchair. As the user manoeuvres into the docking station, the mechanism automatically locks and the powerchair and occupant are then fully secure for onward transit.

The Etac Automatic Tie-down System is suitable for either drivers or passengers who use a powerchair. If a user prefers to have the option to alternate between positions, the Etac Undercarriage System can be installed onto certain OEM seats so that vehicle configuration remains flexible. Several senior members of the Etac UK team were on hand for all three days at the Mobility Roadshow to demonstrate the many benefits of this drive-from-wheelchair solution. Ian Carter, Etac UK Managing Director concludes: “The Mobility Roadshow has been busy for Etac UK this year despite the weather and we are pleased to have met numerous satisfied customers using our E800 series powerchairs. The show has increased in size from 150 to 180 exhibitors for 2012, which is reflected in increased interest surrounding our Etac Automatic Tie-down System. Etac powerchair enquiry levels have risen steadily throughout the year, which we believe is indicative of the outstanding reputation surrounding our products. The Automatic Tie-down System represents one of the best drive-from-wheelchair configurations on the market today and fully complements our world-class Balder and E800 series powerchairs. These Etac models provide trustworthy mobility, reliability and peace of mind across the UK.”

In addition to the Etac Automatic Tie-down System, the complete range of Etac powerchairs was showcased on Stand E4 along with details regarding the new five-year warranty package on selected E800 series models.

http://www.etac.com/en/etaccomuk/?redirect=true

Srin Madipalli, 26 and from central London, is a high-flying corporate lawyer. Despite living with SMA, Srin has also established and now manages the highly successful Disability Horizons website, all with the help of his Etac Balder F290 powerchair.

Srin Madipalli, 26 and from central London, is a high-flying corporate lawyer. Despite living with SMA, Srin has also established and now manages the highly successful Disability Horizons website, all with the help of his Etac Balder F290 powerchair.

Srin has Type 2 SMA which is a genetic disease that causes muscle weakness and a progressive loss of movement. There is no cure but therapy, support and mobility products such as Etac Balder powerchairs are available to help manage the condition. SMA has not held Srin back from achieving a first class degree in Biochemistry at King’s College London and then continuing to qualify as a lawyer. He now enjoys the challenge of being a corporate lawyer within a leading international law firm based in the City of London and continues to be an aspiring social entrepreneur.

He uses a highly manoeuvrable Etac Balder F290 for day-to-day mobility and as this sophisticated, Scandinavian-built powerchair provides sit-to-stand capabilities, Srin is able to engage with fellow professionals at eye level and easily access all resources around his office. Even though Srin spends the majority of his time involved in legal cases, he manages to find time to enjoy global travel and past adventures have included scuba diving, flying a plane, wheelchair trekking through the Alps and a camping safari in Africa. In the second half of 2010, he took time out from work to go travelling around the world for four months and consequently takes a keen personal interest in encouraging disabled people to travel more. This is one of the inspirations behind setting up the Disability Horizons website with co-founder Martyn Sibley who also has SMA.

Srin’s powerchair, the Etac Balder F290, has an extensive range of movements and high levels of functionality both of which give the user increased independence. Whether it is sitting more comfortably at a table, reaching up high or down low, the impressive F290 with its high quality components has been carefully designed to empower the individual and make day-to-day living easier. Ideal for both indoor and outdoor use, the Etac Balder F290 has all the advanced features associated with a top-of the-range powerchair. It allows the user to move to a standing position from either lying or sitting in one easy and controlled movement and once in a standing position, it is possible to drive this powerchair over flat even ground and through standard doorways.

Srin’s website, Disability Horizons, is a professionally written, well designed and content rich platform which provides wide-ranging information, reviews and news for all individuals with an interest in disability. There is a plethora of useful advice features relating to travel, arts and culture, relationships and technology on the website. These are combined with many inspirational personal stories such as those associated with Tilly Griffiths who also uses an Etac Balder powerchair and has raised over £2 million for the Caudwell Children’s charity. Established in 2011, Disability Horizons has now achieved its highest visitor numbers of 20,000 per month and received national press coverage from the BBC and newspapers such as The Guardian.

Srin believes his Etac powerchair has been instrumental in helping him achieve his recent goals and being able to enjoy global travel. The Norwegian-built F290 is renowned in the marketplace for delivering high levels of functionality, comfort and reliability, which are synonymous with Scandinavian assistive technology and is supplied by the UK division of Etac based in Hook, Hampshire. Srin comments: “I have always had a passion for achieving something new and my Etac powerchair helps me reach my goals. The dynamic world of corporate law requires that I operate at a fast pace with the ability to respond quickly and professionally to all cases that arise. The F290 allows me to perform to the highest ability in the workplace and from a commercial perspective, it has saved my employers from having to invest in costly adaptations in the office through its superb versatility and manoeuvrability. The chair also looks really good!”

http://www.etac.com/en/etaccomuk/?redirect=true

Anika

Well, this blog is going to be real hard for me, as I am going to re-enter into what was the most difficult part of my life, but also the biggest lesson I have ever learned and what reminds me to smile every day. This may make you emotional, so all I would say is prepare yourself.

My daughter Anika Roimata Godfrey, is now 7 years old, she is what we call highly disabled. She is severely brain-damaged, has low tone cerebral palsy which basically means her brain can’t control her body and is relatively floppy. She needs support to sit up, can’t roll over and is in a wheelchair throughout the day. She is blind but she can hear. She can no longer eat food as her throat ‘valves’ don’t work and needs to be fed through her stomach. She has diabetes insipidus, meaning we have to monitor her water intake. She can only communicate through facial expressions, i.e cry when sad, smile when happy, concerned look when scared.

Published March 19, 2011

Read more: http://www.foxnews.com/world/2011/03/19/france-fires-libyan-military-vehicle/#ixzz1H61taCEq

Simply say: I oppose Gov. Cuomo’s budget proposal to shift funds away from 4201 schools

scroll down to see

• 2nd letter to Gov. Cuomo re: his proposed shell game budget for 4201 schools
• thank u letters to my NY assemblyman and senator (15 march 2011), which are basically revised letters of the first letter  i sent to Gov Cuomo

to Sign the petition to oppose Gov Cuomo’s shfity shifting of $ away from 4201 schools go to:

http://www.thepetitionsite.com/1/save-ny-4201-school-funding/

Pls sign folks (no matter where u live) – it only takes a minute and is a very secure petition system.  Also spread the word – the more names the better!

For more info on the Oppose Cuomo’s budget proposal for 4201 schools, see:

tp://www.deafnyaction.org/

http://www.rsdeaf.org/news.asp?action=view&ID=584

http://4201schoolsassociation.wordpress.com/

join the open facebook on OPPOSE CUOMO’S PLAN FOR 4201 SCHOOLS

http://www.facebook.com

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Letter to NY Governor Cuomo Opposing his proposed budget re: 4201 funding (submitted online and mailed 19 March 2011)

18 March 2011

Greetings Governor Cuomo:

I would like to commend the NY state assembly and senate in working to restore funding to the 4201 schools that serve Deaf, Blind and severely disabled students.  By law there are to be alternative types of programs offered to different populations so that they are not pigeonholed into a one size fits all model.   Many people who have been mainstreamed share how “inclusion was an illusion” and they often felt isolated.  Sadly, this is not an isolated case of just one or two students by rather of many.  While some may do well and prefer a mainstream setting, many others thrive in programs where they have access to fully accessible language, teachers who understand and value what they bring to the table that is unique and diverse, and allow them to not have to “work for their words” but rather spend their energies and brain power on learning content areas and engaging in creative, active and full participation rather than spending their days on the sidelines.

I regret that you did not stop by the rally for 4201 schools in Albany on Thursday.  The hall was overflowing and the spirits were high and enthusiastic for the call that our fundamental principle for which this country was formed be upheld: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

Equality is not based on putting everyone into the same environment and expecting them to sink or swim but rather on ensuring that barriers and discriminatory practices are removed from their environment to ensure equality of condition.  It was inspiring and amazing to see student after student and parent after parent sing the praise of their 4201 schools on Thursday in Albany.  Just as it was when we marched out front to stand outside in the rain and cold to chant and cheer – to be heard and seen. It was beautiful to see the citizens of our good state exercising and cherishing our first amendment rights of freedom of speech and assembly to send a very clear message to you that you shall not violate existing federal legislation that ensures that Deaf, Blind and Severely Disabled students have suitable and equal education.

Given the fact that Deaf people make up a cultural and linguistic minority, your push to eliminate and/or severely reduce Deaf schools has a significant impact and is in danger of putting an ethnic group at risk. You may not be aware of the long campaign against American Sign Language in this country and the long legacy of trying to keep Deaf people away from each other by isolating them in Hearing schools across the country in an effort to diminish Deaf culture and ASL (ie a cultural and linguistic genocide) but these efforts have been ongoing.  ASL & English education and Deaf schools do the “greatest good for the greatest number.”  Thus, your proposed budget to shift funds away from 4201 schools is all the more perilous.

We very much look forward to seeing you work to restore the 4201 funding and work with the schools to make fiscal accommodations as needed during these hard times while ensuring their commitment to American Sign Language & English and a top quality education for Deaf students, in addition to all the important and wonderful work that happens at the 4201 schools across the state.

As one young protester signed-chanted outside your building on Thursday – “Stop ignoring us now, stop ignoring us now, stop ignoring us now.”  The problem is not that the students do not hear or see, the problem is that you do not listen and understand.  I voted for you and would like to vote for you again.  I truly hope you will do the right thing.  A shell game with dollars that leaves Deaf, Blind and Severely disabled students out in the cold is not fiscally responsible, admirable, wise, right, just or good.

Peace,

Patti Durr

Encl: My first letter

ADDED: http://handeyes.wordpress.com/2011/02/22/letter-to-gov-cuomo-re-4201-schools/

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Thank you letter to NY State Assemblyman Morelle

from          patti durr to morellej (at) assembly.state.ny.us date Tue, Mar 15, 2011 at 9:53 PM subject Thank you for working to restore funding for 4201 Schools

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Auto reply from Morelle:

from   morellej (at) assembly.state.ny.us to pattidurr date Tue, Mar 15, 2011 at 9:53 PM subject Auto: Thank you for working to restore funding for 4201 Schools

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Thank you letter to NY State Senator Robach

from patti durr to robach (at) nysenate.gov date Tue, Mar 15, 2011 at 9:57 PM subject Thank you for supporting NY 4201 schools

Eventually, of course, we shuffled to the bathroom together, got ourselves washed and dressed and made it downstairs.  I congratulated my bones and muscles, and of course my brain, for getting me through yesterday’s FINISHING line  – even if we had come in last,  propped up by my wonderful daughter who had taken my rucksack from me to lighten the load of that last never-ending mile!  We agree it had been worth all the toe stubbing, heart racing, perspiration making, knee and back aching step of the way – and I was proud of my body’s personal achievement in completing the sponsored walk and said a special thank you to my heart, who’d had one of its diseased valves replaced with a clickety mechanical ‘washer’ 25 years previously, thereby saving our life! I also gave special mention to my T6 vertebra, who’d been squashed a couple of summers ago due to our enthusiastic jumping on a trampoline! 

But did one particular little boy’s life of suffering feel like purgatory?  On the tv came an interview with a nominated ’Child Carer of the Year’ award and a smiling young boy was shown in photographs with his arm wrapped around his severely disabled brother – obviously unable to do anything for himself, let alone get himself out of bed or go on a sponsored walk.  The two of them shared a very special bond, which was obvious by the love shining from their eyes and when the announcer then said that, sadly, his brother had died last year, I picked up my dowser as I always do, just to check.  Even so, I was nevertheless taken aback when I hooked on to the still-earthbound spirit of that brave child…and as he was surrounded with a vortex of light he showed nothing but gratitude for this buoyancy aid, allowing him to complete his transition to the other side! What he called back, as he was unable to verbalise these words from inside his trapped body, was – “Tell them I love them!” (his brother and parents) – and I burst into tears.

Still snivelling with the rush of empathy and love I felt for him (and all spirit rescuees), I had  just explained to my husband what had happened, when  the interviewer of his brave brother asked him “what would you say to your brother now, if you could?”  His still-smiling face caused me to cover my own with my hands as it contorted in a mixture of joy and grief…and relief.

“Well I think he’s watching down on us and I would just say ‘I hope you are happy!’    I was wracked with emotions and had to leave the room, but when I returned after a good cry, I realised it was not the end of the story…..  

“And so say all of us!” came the encouragement from above as, at 7  mts past 5 on Monday 27th September,  I opened the spiritual gateway once more and clung tenatiously to my heavily pulling, madly swirling dowser until 5.14 pm when it suddenly stopped dead – 400 severely disabled lost souls who had also been stuck inside their own purgatory had now completed their transition to the light -  with, amusingly (and surely just for me! ) one more late arrival who limped over on crutches to make it to the FINISHING line!  And as I watched him morph into a completely healed  soul, no longer trapped inside a body which was unable to serve him, my heart was filled with joy. “‘The Last shall be First! “ came back a reminder…

And in an emailed thank you from the British Heart Foundation the next day they estimated that ‘400′ had participated (and therefore crossed the finishing line) in that mega walk for charity!  ..Hand on my Heart!

We offer real solutions to independent living challenges for the handicapped, severely disabled and those wishing to age in place.

We are pleased to announce that Special Medical Sales is now a member of Accessible Home Improvement of America  (AHIA).  This is a comprehensive network of certified providers and contractors dedicated to providing accessible home modifications and related products and services. We are trained and qualified C.E.A.C.  (Certified Environmental Access Consultant) provider.   Insurance carriers, life-care planners, case managers and the contractor community require the C.E.A.C. credential.

Accessibility products and barrier free design can help you live more independently.        Examples of Solutions

BATHROOM

• Non-slip flooring  * shower bench * roll-in shower * walk – in tubs
• Grab bars by toilet, tub & shower * Room is at least 5’ x 8’

BEDROOM

• Portable lifts for transfer from bed to wheelchair
• Ceiling lifts for transfer from bed to bath to shower

INSIDE YOUR HOME

• A minimum of 32” of clearance through doors.
• Bedroom and bathroom on main floor
• Laundry on main floor
• No area rugs, use low pile carpeting with firm padding

KITCHEN

• Clear space with a minimum 60 “ turning radius
• Lever faucets
• Handles (not knobs) on cabinets & drawers
• Accessible counters

ENTRANCE

• Ramps or a gently sloping path
• Well-lit entry
• At least one entrance without steps

We will assist in finding consumer funding for projects through workers’ comp, wavier programs, private & public grants, non-profit organizations and private financing.

Please call Specialty Medical Sales ask for Tom Polston 972-434-2073

Today I was lucky enough to stumble upon my own story to pitch to the news editor which will hopefully be in Fridays paper. In the canteen there was a petition to help a severely disabled young girl from Belfast get her new pink electric wheelchair.

It turned out she was having trouble getting the electric wheelchair she was measured for in February 2009 and is now being told she cannot get one under recently reviewed guidelines due to her epilepsy. She must be seizure free for a year before she qualifies now but her mother worries this may never happen.

It was a great story to work on and the Belfast Telegraph’s education correspondent was extremely helpful after she pointed out the petition to me in the canteen. I enjoyed working on something fresh and as long as we get the picture on Thursday then the article will hopefully pass the test and go in on Friday.

My story on the wild pigs made it into the paper as did my piece on Philippa O’Hara, unfortunately it was cut down but with so many stories flying about the office this is something I must get used to. I can’t believe 2 weeks is almost over here at the Belfast Telegraph.

My week in Newcastle is fast approaching and then I will return to the Belfast Telegraph offices for one final week. I have learnt a lot already and I will be able to apply this in the future.

And although my future job prospects are uncertain at the moment I feel positive about getting into my first newsroom, whereever it may be. I do have the feeling however that the job will be all consuming and I will not want to turn off, but then again do journalists ever turn off?