Alice Maynard on the things that help her maintain her independence.

Head and shoulders picture of Alice

Dr Alice Maynard CBE is an experienced Non-Executive Director having worked since the early ‘90s as a Trustee of several Charities and a member of two Housing Association Committees.
Alice was Chair of Scope for 6 years, a £100m turnover charity providing services to disabled people with high support needs and campaigning for disabled people’s equality.
Alice is a Chartered Director (Institute of Directors) and has worked in the private, public and third sectors and she has established two successful businesses of her own (Equal Ability and Future Inclusion).
Alice has spinal muscular atrophy and uses a powered wheelchair to get around. She lives in Milton Keynes.

Here are the links to the products and services Alice mentioned:-

If you would like to appear on our podcast Gear, Gadgets and Gizmos please contact Chris Lofthouse. His email is chrislofthouse@RiDC.org.uk or call 0207 427 2467

Vivek Gohil – Gamer Extraordinaire.

In this Gear, Gadgets and Gizmos episode from the Research Institute for Disabled Consumers (RIDC), I’m in conversation with Vivek Gohil who has managed to find ways to enjoying gaming by bending technology to his will.

Vivek is 29 and from Leicester, he lives with the muscle-wasting condition Duchenne Muscular Dystrophy, he uses a ventilator to help him breathe and is a powered wheelchair user. 

He is a Blogger, Speaker, Accessibility & Assistive Tech Consultant and Freelance Writer for the gaming website Eurogamer. 

Vivek primarily writes about disability representation in all forms of media, assistive technology, gaming, mental health and his lived experience. 

He’s worked with Microsoft testing their Xbox adaptive controller, Logitech reviewing gaming mice and game developers to improve accessibility and disability inclusion. 

Comics, Sci-Fi, Robotics, Superheroes, Space and Psychology interest him so if you’re not busy then he can talk your ear off about those topics. 

You can learn more by visiting Vivek’s blog posts at http://bit.ly/2Zp1PcX

During our conversation Vivek mentioned the following products:

Gaming Mouse Logitech 3250 http://bit.ly/308h0Iq

Windows Dictation Software 

Playstation 4 Controller adapted by Special Effect a charity. http://bit.ly/3097IvC

Xbox adaptive control

Titan 1 controller  https://amzn.to/3050cSn

Rate it! is a product review website by and for disabled people. It’s an online space for you to share views of products (specialist and mainstream), hacks, and tips to make life easier. If you’re a disabled or older person living in the UK, use your knowledge and experience to do consumer research – Join the RiDC research panel 

Have Spoon Will Travel

Born in 1960, Rosie’s impairment is four-limbed Phocomelia caused by the drug Thalidomide.

After graduating with a BSc., (Hons) Degree in Psychology through Cardiff University in 1985, Rosie joined the Civil Service and remained with the Department of Trade and Industry at Companies House Cardiff until 1993 at Executive Officer level.

In 1995 Rosie formed the RMS Disability Issues Consultancy, out of a genuine desire to deliver first-class training in the field of Disability Equality and Disability Issues.

Rosie received an OBE in the Queen’s New Years Honours List in 2015, “For Services to the Equality and the Rights of Disabled People.”

Rosie was awarded an Honorary Fellowship from Cardiff University in 2017.

Married, with one son, Rosie has a particular interest in radio, television and the arts.  Rosie has been the subject of several documentaries. She has worked with the BBC, Sky and ITV, and can be heard regularly on BBC Radio Wales.  She is a freelance TV and Radio Presenter.

Links:

Spoon and fork holder with a magnet

Single use flexible straws

Folding shelf for eating in restaurants

Fork holder with a magnet, use cheap cutlery

Mount n mover https://www.mountnmover.com/

It’s all about finding your way around says R​ick Williams

Rick Williams runs his own business based in Brighton. The company have been around for about 20 years and supply consultancy and training services to organisations that want to improve their employment and services provided for disabled people.

Rick went blind in his mid-40s as a result of retinitis pigmentosa and this explains his lifelong commitment and passion for ensuring that disabled people, particularly those with sight impairments, lead as independent and inclusive a life as possible.

In this edition of Gear, Gadgets and Gizmos Rick discusses a variety of things which enable him to have a very full and active life.

Freeney Williams http://www.freeneywilliams.com

iPhone and Ipad has a Text to Speech Function

Free Navigation support https://www.bemyeyes.com/

Jaws Screen Reader http://bit.ly/2DEWztk

Apple Vis https://www.applevis.com/

Talking Microwave http://bit.ly/2DB3K5x

Tactile Measuring Jug https://amzn.to/2DF77st

Dymo Tape http://bit.ly/2DDBfEw

Geoff Adams-Spink talks about his favourite gadgets

Hello everyone and welcome to this the inaugural edition of the Gear, Gadgets and Gizmos podcast. 

We’re delighted to welcome as our first guest Geoff Adams-Spink one of the trustees of Research Institute for Disabled Consumers (RiDC).

Geoff was born with multiple impairments as a result of thalidomide. He has  shortened upper limbs, a missing right eye and extremely restricted vision in his left eye. 

He left the BBC in 2011 to set up his own disability equality consultancy and to Chair an international federation of organisations for those affected by congenital limb difference (EDRIC). 

As a trainer and public speaker, he has worked extensively in the UK, many EU countries, Ukraine, China and Thailand. 

He has an outward-looking world view and seeks to help international business, public and third sector organisations to learn from each other by spreading best practice in the field of disability equality. 

In my conversation with Geoff he talks about the things that he uses to overcome the difficulties that his impairments put in his way. Some are simple devices others more complex but all provide a solution.

I’ve posted below links to the products and services that Geoff mentioned.

Don’t forget to take a look at the RateIt website hosted by the Research Institute for Disabled Consumers where you will find a whole host of products and gadgets which might be useful to you. https://rateit.ridc.org.uk/

Finally, if you are a disabled person and would like to join the RIDC Consumer Panel please email Chris Lofthouse at chrislofthouse@ridc.org.uk or call 020 7427 2467

Links:

Clamp for tablet Bestek https://amzn.to/2VBrDBa  £22 approx 

Amazon Echo Smart Speaker https://amzn.to/2VDfGLj 

Aquarius Portabidet http://bit.ly/2VBY5Dn 

Closemat http://bit.ly/2VFgE9Y 

Gerberit  http://bit.ly/2VCH243 

Disabled Facilities Grant from Local Authority http://bit.ly/2VDj48Z 

The Generation Game

The Generation Game

How often do you hear, ‘what do the young people want?’ Perhaps not often enough. Certainly not as often as ‘how things have changed since my day!’ 

We wanted to hear from the next generation so we invited the multi-talented Abbi Brown on to our show. She works for the ad agency behind the now famous Malteser adverts on Channel 4.

With Abbi we explore whether you can make more of a difference from the inside or outside, who her (disabled) role models were when she was growing up and does she think there’s a disability movement these days. Indeed, what is activism these days, what are the next generation ‘fighting for’ if anything and does social media help or hinder? We also talk about using the bus and not thinking twice about it. 

Abbi has personal experience of disability with OI (brittle bones) deafness and mental health problems. 

You can follow Abbi on 

Twitter @AbbiSigns 

Instagram abbisigns  

YouTube  Ithinkmynameismoose

To travel or not to travel that is the question.

How many of you reading this think about the cutlery you might use when you go out for a meal? The chances are you’ll be much more interested in the menu, the prices, the people you’re eating with and the restaurant’s ambience.

A similar situation arises when considering going to the seaside on a gloriously hot summer’s afternoon. If you’re fastidious, you’ll check your car tyres, the oil, you’ll fill up the windscreen washer bottle, and you’ll make a list of things to take that will make the trip more enjoyable. I doubt that you’ll think to check on the availability of toilet facilities at motorway services on route or at your destination!  

For many disabled people, particularly those with severe or complex mobility impairments, the exact opposite applies. The availability of appropriate toilet facilities will be uppermost in their minds, and the lack of certainty about whether the necessary facilities are available may be enough to prevent the trip to the restaurant or the seaside.

What’s ironic is that accessible facilities have not kept pace with the increasing availability of personal transport through programmes like the Motability Scheme. The motor industry and, in particular, mobility vehicle adapters have continued to design and develop all manner of gizmos that enable even the most severely disabled person to either own and drive an accessible vehicle or to be safely and comfortably carried in one as a passenger. The variety of electronic devices now available is mind-boggling. Vehicle tail lifts make it possible for extremely heavy powered wheelchairs to be lifted and secured; seat transfer systems assist people to move from their wheelchairs into the driving seat, electronic hand controls take the strain out of steering, braking and changing gear. All these innovations, of course, come at a price but what is the point of spending thousands of pounds on an accessible vehicle if you can’t enjoy an accessible environment on the route to and at your journeys end?

It’s not all bad news. Wheelchair users have seen significant improvements in the provision of accessible toilets.  The National Key Scheme better known as the Radar key began in 1981. Since then, more than 400 local authorities and thousands of businesses have joined the Scheme. Some 9,000 toilets are now listed as being accessible via the Radar key, but the figure is probably much higher. Wheelchair accessible restrooms are far more common, most motorway services, mainline railway stations,  shopping malls and theme parks have had these facilities for a very long time.

A study in 2009 by the University of Dundee found there were 250,000 people in the UK for whom a standard accessible toilet does not meet their needs.  Accessible restrooms are great for those who can get themselves out of a wheelchair unaided. However, lots of people cant do this, such as people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, and some older people. John Lewis, the famous high street retailer, recently made headlines for all the wrong reasons when a mother complained that she had been forced to change her severely disabled child on the toilet floor.  John Lewis defended itself by arguing that it didn’t have enough space to provide bigger toilets but promised to review this when it refurbishes or builds new stores.

The Changing Places campaign (http://bit.ly/2E9Dc8X) begun back in 2003 seeks to ensure that the most severely disabled person has access to appropriate toilet facilities thereby enabling them to do what most of us do without even thinking about. As a result of the Campaigns activities, there are now well over one thousand Changing Places toilets across the UK. These toilets provide not only, as you might expect, a w.c. and wash basin but also offer a hoist, a sizeable drop-down table for changing purposes and plenty of space to enable carers or support workers to assist the person where necessary. It is becoming increasingly possible to plan a trip using the Campaign’s route planner to identify suitable toilet facilities on your journey. As an example, I plotted a route from Hertford in Hertfordshire to the Brighton Marina in Sussex and found at least seven facilities that meet the Changing Places criteria.

Picture of a Mobiloo vehicle showing entry ramp at the rear and an open side entry
Mobiloo vehicle

A more recent exciting innovation which began in 2014 is the development of the Mobiloo. (http://bit.ly/2H1JfQk) The concept is very similar to the Changing Places facilities, but with a significant difference. The toilet equipment is fitted inside a small van or lorry which means it can be located at just about any outdoor event, space permitting of course. Mobiloo is a social enterprise that now has a fleet of seven vehicles across the UK.  The vehicles are for hire and come with a volunteer driver who shows people how to use the equipment onboard.  The Mobiloo opens up all manner of fascinating travel possibilities; gymkhanas, craft fairs, sports events, music festivals, Glyndebourne and Glastonbury here we come!

We’ve come a long way since the days of institutional care for the most severely disabled people in our society. Independent living, autonomy, accessible housing, personal transport are not just pipe dreams; they are becoming the norm. We will know we’ve cracked it when those with the most complex disabilities can travel around the country without worrying about whether they can find and use the loo!

 

( This article 1st appeared on www.cartwrightconversions.co.uk website)

What price independence?

Those of you who know me reasonably well will know that I’m a bit of a petrol head. I simply love driving! I know that’s not terribly cool theses days given the effects on the planet, but I blame my obsession on the fact that I’m a wheelchair user and as a result, I love the freedom that driving gives me.

In my time I’ve driven some pretty incredible motors. My journey started way back in the 1960’s with the appropriately named Tippen Delta 2 a three-wheeled invalid carriage supplied by the then Ministry of Health which preceded the Motability Scheme. I managed to overturn my aptly named “Tippen” on several occasions. These vehicles were primitive, unreliable and eventually banned from Britain’s roads in 2003 as they were deemed to be too dangerous! Those of us who survived this unique driving experience used to wonder whether this was a secret initiative designed to reduce the population of disabled drivers!

Picture of a Tippen Delta 2 invalid carriage
Tippen Delta 2 1962

After seven years of crashing around in invalid carriages, I bought my first “proper” car a used two-seater sports car the MG Midget; a Porsche-engined VW Beetle followed, then a Saab Aero. I ended this extravagant period of my life with a BMW 5 Series, a Mercedes E class estate and finally a Range Rover!

The invalid carriage was an ill-equipped, unreliable and dangerous vehicle but I loved it. I still remember the pleasure and excitement of being able to go out when I pleased; I could go where I wanted and most of all I had control and choice. The Range Rover provided all of the same benefits but with leather seats!

As I’ve got older and my physical abilities have waned I’ve moved from walking on crutches to using manual wheelchairs and now to powered wheelchairs. This physical deterioration has had a profound effect on what vehicles I am now able to drive. The observant among you will quickly realise that you can’t fit a large powered wheelchair into most saloon cars. My solution has been to use wheelchair accessible vehicles (WAV) supplied via the Motability Scheme. So the wheel has turned full circle!

MG Midget Sports Car
MG Midget Sports Car

The Motability Scheme is a far cry from the old invalid carriage days and has provided complete driving solutions to hundreds of thousands of severely disabled people for years; incidentally, they celebrate their fortieth anniversary in May.  I’ve variously leased through the Scheme a Chrysler Voyager, a VW Transporter and currently a VW Caddy. All accomplished, reliable vehicles but not quite BMWs although the costs including adaptations are not that different.

For many severely disabled people, their only real option for independent travel is the Motability Scheme, but the government’s recent changes to the benefits system are having a profound negative effect. Since 2013 51,000 people have had to return their Motability vehicles because they failed to satisfy the new criteria used to qualify for higher rate personal independent payments (PIP). It is estimated that the final figure will be closer to 150,000 returned vehicles. What lies behind these numbers are individual human stories. Disabled people are potentially losing their jobs because they can’t get to work, being prevented from seeing family and friends, stopped from going on holiday, reliant on others for medical appointments, shopping and leisure pursuits.

The Motability Scheme plays a vital role in ensuring that disabled people can live independently. For many of those who use the Scheme, it is the only way they can afford to lease an appropriate vehicle for their level of impairment. The draconian measures being used to reduce the benefits bill are having a devastating and disproportionate impact on the lives of many disabled people, for those who rely on PIP in order to fund their personal transport, the future looks very bleak indeed.

It’s one thing to have less money to spend, most of us have been through that,  it’s quite another to also lose your ability to live independently.

 

Services or Swervices?

Over the past few weeks, I’ve become increasingly concerned about the struggles that some disabled people seem to have when using or accessing the most basic customer service.

Let me explain; the Guardian recently published a story about Anne Wafula Strike, a Paralympian wheelchair user who was forced to wet herself on a train because the accessible toilet was out of order. (http://bit.ly/2jw0Xzz) A few days later I came across the story that Frank Gardner, a wheelchair user and BBC journalist, had been left on a plane because the equipment needed to help him disembark was delayed. (http://bit.ly/2jvKYkV) Then Socitm which represents IT and digital professionals in the public sector, published research which revealed that one-third of website home pages used by local authorities are not accessible to many disabled people. (http://bit.ly/2jvY41G).

I guess these stories are just the tip of the iceberg and that many of you have personal horror stories about the lack of accessible services you’ve encountered.

What troubles me is that legislation was passed back in 1995 that was supposed prevent these difficulties from arising. So what is going on?

Clearly, financial stringencies have a part to play, but I’m not convinced that this is the main reason. I sense that for some service providers disabled consumers are just a nuisance. They think it is less expensive or less complicated to ignore us and hope that by placing more barriers in our way or by making life harder for us, we will go away. Hence the term “swervices not services.”

Am I being harsh or exaggerating the situation? I don’t think so! We have been complaining about the lack of appropriate customer service and access for years; we have eschewed the benefits of inclusive design for decades; we’ve protested, sued and lobbied and despite all this, our concerns continue to be disregarded.

Perhaps there is some light at the end of the tunnel. Doug Paulley’s recent victory in the Supreme Court concerning wheelchair spaces on buses is a pointer to customer service providers that they will have to do more or face serious consequences. (http://bbc.in/2jGj3Bx)

Planes and Boats and the search for winter sun

I’ve just returned from a lovely break in the Carribean. Winter in the UK or somewhere nice and warm? Not a difficult decision! Two weeks cruising on a luxury liner being spoilt rotten sounds like a good idea. Well like everything there is another side.

First you have to get to the Carribean. This usually involves a long haul flight of around eight hours on an aircraft that lacks accessible toilets. One of the fundamental rules of flying long distances is to drink plenty of water. Not advisable if you can’t visit the bathroom. Our flight out to Barbados was nine and half hour long, the seats lacked and any form of adjustment and were extremely uncomfortable. Once we landed I had to wait an hour to be off-loaded from the plane. We were then taken straight to the ship, bypassing customs and the airport terminal toilets; the journey lasted another forty-five minutes. Embarkation took around half an hour, so I went eleven and three quarter hours without using the loo! Much self-control and crossing of legs is the name of the game

Cruise liners are brilliant from an access point of view, and P&O’s ship the Azura is no exception. She has spacious wheelchair accessible cabins with roll in showers,  lift access to all decks, swimming pool hoists making swimming possible for the most severely disabled passenger.

Picture of cruise ships berthed in the Dominican Republic
Cruise ships berthed in the Dominican Republic

The trouble begins when you go ashore. Our ship was able to berth in all the places we visited, so there was no need to use tender boats. To appreciate the Caribbean islands you need to venture inland, unfortunately, very few tour buses are wheelchair accessible. The result is that mobility impaired people are forced to stay close to the port to while away their time in endless identical shopping malls. P & O do provide a list of available tours but on our cruise, the accessible buses that were available only had one wheelchair space. I saw, at least, a dozen wheelchair users so this provision was wholly inadequate. In one location they had provided a shuttle bus to get passengers from the ship to the town. Unfortunately, those people using wheelchairs, but who could walk a little, were refused access because there was nowhere to store the wheelchair. It seemed a little ironic that the very people the shuttle was designed to help were excluded from using it.

I do understand some of the places we visited do not have the resources to provide the kind of accessibility we have come to expect in the UK but what I find puzzling is why P & O won’t do more to cater for the increasing number of mobility impaired passengers. The last straw was we

Sign in St Maarten advertising accessible tours
Sign in St Maarten advertising accessible tours

left the ship in St Maarten to see a kiosk a hundred yards from the port entrance advertising wheelchair accessible tours.

Many disabled people find cruising one of the best ways of taking a holiday, it is possible to see places that you might not otherwise be able to visit. I’d be interested to hear about your experiences so please send me your comments and I will do my best to see they are passed on.

To end on a more positive note the sun shone beautifully, my tan has improved, my waistline has expanded as a result of the food being plentiful and excellent, and we met some fascinating people.

Here are some links to this week’s other news. I hope you find them of interest.

Government agrees four more years of ILF transition cash for councils

Maximus ‘has falsified results of fitness for work tests’, says MP

Anger at Osborne’s working-age benefits freeze

Police duo jailed over failure to protect disabled murder victim

News provided by John Pring at

www.disabilitynewsservice.com