In March this year the Royal Academy of Engineering announced seven promising inventors currently based in UK universities who are researching and inventing in areas which could revolutionise industry and in some instances, daily life for people living with disabilities. The seven inventors have been pinpointed as offering something original and special that has real potential for advancing technology in the future.
The best minds from British universities have been discovered and their innovation has been showcased and is now supported by £85,000 funding each through the Royal Academy’s Enterprise Hub. Many of the ideas such as technology which should be able to work towards eliminating wrinkles and the creation of a new smart material will be interesting to see develop but there are some clear frontrunners when it comes to the disability sector and we’re looking at those more closely here.
Smart Glasses by Dr Stephen Hicks
Stephen Hicks’ Smart Glasses
Dr Stephen Hicks is a Research Fellow in Visual Prosthetics and he is working to produce revolutionary smart glasses designed to aid those living with visual impairments and blindness. Rather than focusing on sound based or touched based assistive technology Hicks’ research and prototype is a visual display which can be worn as glasses and is designed to improve the usefulness of the vision a person already possesses.
The glasses work by using the surroundings and detecting the 3D structure of nearby objects and then highlighting these on the visual display, allowing for recognition of things such as people, obstacles and faces. Hicks and his team are working on their prototype at present and hope to have a lightweight pair of glasses, market-ready towards the end of the year. This video explains a little more about what’s on offer:
Uroglide by Dr Nicola Irwin
Uroglide is the development of Dr Nicola Irwin and her team at Queen’s University Belfast. Uroglide is an innovative creation designed to reduce the pain and discomfort that comes with use of catheters. Whilst many people use catheters due to operations and other work, some people require catheterisation as part of their daily life. Many people live with poor bladder function and learn to self-catheterise but this can be painful and the risk of infection or further urethral problems is higher than medical professionals would like.
Dr Irwin and her team at Quen’s have developed a new and exciting coating technology which is cheaper than the current industry-standard coating for catheters and remains lubricated for longer, adhering strongly to the catheter at the same time. A lot of the pain in catheter removal at present is down to the dried out nature of the catheter itself but this new coating removes that problem completely, improving the patient’s experience and limiting pain. Uroglide has the true potential to save time and make a life changing difference to people who suffer from the pain of self-catheterisation using the current devices and their coatings.
Fingertip Computer Gaming by Dr Jack A. Cohen
A little more unusual and indirect than the other innovations, Dr Cohen’s development is a wireless device that detects and uses 3D movements in your fingertips to interact with a computer. Whilst it has been touted as a huge potential development for computer gaming and remotely operating machinery, it could also be used in AAC technology, as an alternative for people who are able to use their hands but perhaps are non-verbal.
The technology works by combining information from cameras and set wireless sensors and people are already suggesting it could even replace the traditional computer keyboard and mouse, allowing our hands to become the key controllers instead. Dr Cohen’s technology stands out because it is accurate and affordable and has the real potential to give virtual reality a chance to take to the mainstream. This video is an example of the technology in use:
These are just some of the many ideas our universities are coming up with and the more technology can be utilised to improve people’s lives, the more funding and focus it should be given.
Driverless cars are becoming more and more talked about, with the UK government taking step to put Britain at the forefront of driverless technology and many delivery services from Google to Amazon taking steps to use autonomous delivery vehicles to speed up and offer better services. Stepping away from the commercial world though, there’s the wider discussion of how driverless cars will help people in general and here we’re looking at how driverless cars may improve and benefit the lives of disabled people, improving independence and making access to a wider range of places easier.
First, we’re going to look at the current state of the driverless car technology industry and predictions for the future.
Driverless Car Technology 2015
In February 2015, as mentioned above, the Department for Transport have begun testing autonomous cars, with self-drive pods tested in both in Milton Keynes and Coventry and as this video shows, there is considerable excitement and positive forecasts for the future of driverless car industry in the UK.
Further to this there are a large number of companies and dedicated researchers focusing on driverless technology and have big plans for the future. Mercedes, for example, have plans to launch their Autobahn Pilot in 2016 which will allow for hands-free driving on motorways, with hands-free overtaking, as this video shows:
Nissan too are working on features which allow for autonomous manoeuvres on multilane roads by 2018 and Jaguar expect to release their first driverless vehicle in 2024 with Daimler and Ford following quickly behind in 2025.
It’s clear that driverless technology is very firmly coming to our roads and soon it may be something we can all benefit from, including people with disabilities. In the long term the Institute of Electrical and Electronics Engineers believe that as many as 75% of all vehicles may be autonomous by 2040.
The Benefits of Driverless Cars for Disabled People
General Motors EN-V Electric Autonomous Concept Car
There are many benefits of driverless cars, some general and some specific to people with disabilities. The more general benefits of driverless vehicles include:
Human error is a key factor in many road traffic accidents, with driverless vehicles there is no human error and failing to look or not seeing hazards is no longer an issue. Driverless vehicles use a range of sensors placed around the whole car, ensuring they can sense hazards. If safety is improved then there will be less risk of injuries, fatalities and disabilities caused by traffic accidents.
More Free Time
The average driver in England is said to spend around 235 hours driving a year on average, which is equal to six working weeks. With a driverless vehicle you have the choice of driving as well as letting the vehicle drive itself, allowing the driver to take time out to enjoy the ride.
The long-term belief for driverless technology is that it will be able to communicate with pieces of road infrastructure, including traffic lights and therefore avoiding congestion, avoiding traffic jams and taking routes which are quicker and cause less of a risk to the environment.
Looking at driverless technology as a disabled person it could completely revolutionise the lives of many, with the opportunities for people who had been unable to drive especially interesting. Below are some of the key, specific benefits of driverless vehicles for disabled people:
Accessing the World
With access to a vehicle it is easier to travel, easier to get around and means simple things like shopping, attending hospital appointments and work can be reached more easily. The current situation can be very hard for individuals who don’t own or have access to a car as accessible taxis aren’t the norm and the difficulty of access to buses and trains has been well documented. There has even been recent news that some taxi drivers have intentionally overcharged wheelchair users, making navigating public transport not only difficult but expensive too.
Much like the point above, a driverless car can help disabled people get out more often, enjoy a social life and feel safe whilst doing so. Enjoying evenings and nights out safe in the knowledge that getting home will be a simple straightforward journey in your autonomous vehicle, makes it easier to enjoy the night out and not have to worry or feel anxious about getting back, or panic about the cost.
What else do we want from Driverless Cars?
Disruption. The end of the mobility scooter? Driverless Motability Cars for all disabled people?
The advent of driverless technology is extremely exciting but there are still questions. Will the mobility scooter become obsolete? Scooter users will be able to use the “mainstream” driverless cars for short journeys instead? The government’s Motability scheme would may need to be updated and edited. There would be many people who could suddenly use a car when previously it had been beyond their abilities. This could see a huge number of new people wanting to access the scheme.
Driverless Car Sharing for Community Groups
There is also the possibility that driverless vehicles could be bought and offered by community groups, allowing them to be shared by their members. They could be used as autonomous taxis, returning to a central depot in between drop offs and thereby used by several people during a day. When it’s your turn to use the vehicle it can drive to your door and pick you up!. This is step forward, especially in environments where people live in supported accommodation or care homes where trips out and excursions can be limited by the staff on the rota and whether or not they’re insured to drive the provided vehicle, if there even is one!
Also in places where regular accessible transport is hard to find like small rural villages for example. A car could be shared by a group of older people living near to each other.
Pre-programmed Wheelchair Journeys?
Where will technology go next? Is there scope that the same technology used for driverless cars can be used in electric wheelchairs? Could they too become autonomous and self-guided? People could have pre-programmed journeys around the house, school or to local shops.
Telecare and health monitoring
Other features which could be useful for disabled people, in the most modern vehicles include health monitoring and telecare possibilities, which could perhaps be built into the cars too. People with epilepsy or heart conditions for instance, could have sensors built into their modes of transport, perhaps even programmed to take them to a safe destination or alerting friends or relatives if difficulties occur?
The Future – Please comment with your ideas
It does seem that the possibilities are almost endless with driverless technology and though there is a lot of testing that still needs to be done, there is real scope for change which could make the world even more accessible and allow even more disabled people to enjoy an improved level of independence. Please comment with any ideas or suggestions you have. If you can think of ways driverless vehicles could help disabled people, please let us know in the comments.
“Would you like a cup of tea?” – Nao, the frst robot with emotions
Every January the International Consumer Electronics Show in Las Vegas is a chance for the latest innovations in technology and gadgetry to be displayed. This year there were many highlights but more than ever before robots came into the limelight. Many companies have developed and honed their robotic developments into fully fledged prototypes and products ready for sale and simply waiting to be installed into homes around the globe. The robots developed for 2015 are a long way from the science fiction anthropomorphic droids from films and TV shows but they’re getting there and they’re certainly a long way from the old classroom Roamer robot too.
Rosie the Robot from the Jetsons
With so many fantastic innovations we thought it’d be worth looking at them from the perspective of health and social care and how they may be able to be used by disabled people for a range of purposes. Though none of the robots were that all-in-one house robot ready to serve and follow direct instructions, many of them can have a huge impact on daily life and make a different to the independence and capabilities of individuals with a wide range of disabilities. Below is a closer look at some of the key finds at CES 2015.
Fure-I Home Robot
The highlight of CES 2015 and one of the ones to watch, despite its high price, was the exceptional Furo-I Home, developed by South Korean company Futurebot. In the shape of a cone and covered with sensors, Furo-I Home is topped with a tablet which displays a friendly droid-like face, ready to assist with your daily requirements.
Furo-I Home can be programmed to take control of internet-controlled devices in your home, meaning it can be used to switch lights on, heating on, music or television and it can also be used to provide reminders and guidance for children, elderly people and those who may need prompts to remember things such as their medication or to eat at set mealtimes. It’s the kind of development which could help individuals who sometimes require support workers as it can provide key reminders and also is a direct line to family and friends, as the droid can send messages asking for help or assistance. Expensive at £660 when it comes to market, it probably isn’t the droid for everyone but is a true example of how far robotics have come.
The Branto Ball has been described as a cheaper alternative to the Furo-I Home and is currently the subject of a Kickstarter campaign hoping to ensure as many people as possible can enjoy all the benefits of their own Branto Ball. This smart little robotic ball is going to retail at around $399.
The Branto Ball is a small sphere-like robot which can be used to carry out a wide range of household tasks from the comfort of your smartphone, with remote access, whether you’re home or not. It can do anything from switching on the television, setting the lights and the heating and it can also be used a remote camera or monitor, to watch over children, pets and more.
The fact that it turns your smartphone into a remote means it makes settling down for the evening easier, especially for individuals who may live with chronic pain or mobility issues, as the additional strength or effort needed to switch off the heating, television and lights can be carried out with a single touch. This video explains more about the Branto Ball:
Budgee Bot is an extremely clever and extremely useful bot which could be used by many people living with a range of different conditions and disabilities. It’s designed to help ensure people who have difficulty with lifting heavy loads to have a robot companion to do it for them. It works through the owner wearing a transmitter and this connects to the robot, ensuring that it followers the owner around – meaning anything you need to hand can be carried with ease, without the stress of lifting and pulling.
This video introduces the Budgee Bot in more depth:
Specific Task Robots
As well as robots which can be used for a wide range of tasks, CES 2015 saw many single specific task robots on display, making many individual tasks easier to carry out and in some cases more enjoyable. Here is a closer look at some of those innovative inventions.
Droplet Robotic Sprinkler
Droplet Robotic Sprinkler
We have talked many times about the garden aids available for disabled people and this is one seriously high tech addition for green-fingered growers. The Droplet Robotic Sprinkler has a modern, rounded design and works through a Wi-Fi connection which can be set to propel different amounts of water to different plants in the garden. Different plants needing different water levels can be accurately targeted and weather data can also be taken into account to delay watering when it isn’t required. Droplet allows you to enjoy your garden at leisure whilst limiting the labour that comes with it.
A niche robot which is ideal for summer parties and barbecues. If you regularly have the barbecue fired up in the summer months then the Grillbot will save you the hassle of all the cleaning afterwards. Using a specialised algorithm Grillbot cleans the barbecue and gets it back to its best, ready for your next use.
iRobot were back at CES this year but rather than showing off their fantastic floor cleaning robots, including the Roombaand Scooba, they were pushing forward the idea of drones in the home, with hints at the development of a robot butler! We still really rate the robot vacuum cleaners and believe they’re a true development in the right direction for independence in the home.
A great creation for anybody living with allergies or breathing difficulties, the Atomobot is a mobile air purification system which roams around the home and hunts out airborne dust and odours and then removes them. A great way of keeping the home fresh but also a fantastic development for anyone who struggles with household allergies.
The All-In-One House Bot
The crowning glory of CES 2015 came from Meccano and the announcement of the Meccanoid. Marketed as a robot which can be built and programmed by children the genuine capabilities of Meccanoid are fascinating. It can be programmed to move in certain ways, playback voices and though it’s a long way from that original home bot who can be left cleaning the house and caring for the kids, just watching this video will show you a great example of what Meccanoid can do:
JustoCat: Robot Cats for Dementia Therapy
JustoCat provides therapy for people with dementia
JustoCat is another modern innovation which has become a huge sensation and has been hailed as a truly effective and valuable therapy tool for people living with dementia and related conditions. JustoCat has been developed by academics in Sweden and has the prime purpose of providing comfort, peace and relaxation to people with dementia, as well as a sense of company to prevent or at least lessen loneliness. JustoCat purrs and meows just like a regular cat but at £1000 or thereabouts to buy, this cat is clearly a medical device and not simply a toy.
The JustoCat has been developed in partnership by robotics experts at the Robotdalen company and healthcare researchers and academics at Mälardalen University. The JustoCat has been released across Europe and the team behind the invention believe it is good enough to be prescribed by doctors to many people living with dementic and related conditions. The simple functions of JustoCat are to mimic the behaviour of a live cat but with the benefit of washable, removable fur so it’s completely safe and hygenic in care environments and institutions.
JustoCat can help decrease loneliness and promote interaction
The team behind the JustoCat believe its simple function can promote interaction and communication in people who may struggle otherwise due to their condition and their research and tests back up this assertion. As well as being a valuable tool for people living with dementia, the experts also believe that JustoCat can provide be used as complimentary therapy for people with learning disabilities and its simply purpose is to provide an improvement in psychological, social and physical well-being.
It may look like a toy but JustoCat is far from it, with hopes that it will be available in the UK soon too. The benefits for people living with dementia, a condition which is significantly on the rise, have been studied and JustoCat can make a real difference – it just simply needs to be made available. The latest figures from the Alzheimer’s Society predict that by the end of this year, over 850,000 people will be living with a form of dementia so more focus on technology which can help is an absolute must. If JustoCat makes a difference then it should be made available. This video shows exactly how it works:
Robots and Social Care
It still seems to be in a very distant future that we can trust robots to be responsible wholly or even partially for social care but there are so many helpful and useful developments that disabled people are gaining access to things, even in their own homes, which may have been difficult before. Little things like the self-watering garden and the one-switch for all via our smartphones can take the stress out of daily life so significantly that they are something to truly applaud. Perhaps alongside telecare services similar to skype or facetime helping to fill the gap with the human interactive side of care.
With the innovations launched at CES 2015 it’ll be exciting to see what happens in 2016!
Released on 1st January The Theory of Everything has become a sensation, winning both the Best Actor and Best Original Score awards at the Golden Globes and the interest around the film is just growing and growing. Back on January 3rd Jane Hawking appeared on BBC Radio 4’s Woman’s Hour discussing her life with Stephen, the time she spent as a carer, the aftermath of her marriage and even her thoughts on the film.
In previous posts since the film’s launch we’ve discussed the technical side of things, how Professor Hawking actually talks but here we’re looking at the more personal side of their lives, which has become critically acclaimed in cinemas around the country.
Talking about the film Jane expressed how strange and mesmerising it was to see Felicity Jones playing her and even remarked how Stephen too was amazed by how fantastically Eddie Redmayne came across playing him, with some stills of the two next to each other almost identical.
The interview also delves more deeply into the life Jane had trying to cope with Stephen’s Motor Neuron Disease with very little knowledge of what the disease could do and a prognosis of two to three years before his final death. In reality things panned out very differently and Jane herself highlights how she wished she had asked more when she had the chance so she would have been able to ask for help, get the right provisions in place and start with the support needed from the beginning, with a better system in place for vetting the medical and health professionals who came into their lives.
Jane described her life, when things were deteriorating, as ‘on a precipice’ not knowing what would happen next or how they’d cope with it but it wasn’t without hope, and her strength of character comes through, despite the issues they faced as a family.
Jane Hawking’s Autobiography
Both Stephen and Jane Hawking entered new relationships after theirs was over and Jane highlights how the film portrays her relationship with Jonathan Jones very well, showing respect for all parties involved and she talks eloquently about how they managed their feelings to ensure no one was initially hurt. The mentions of Stephen’s second wife Elaine are fleeting and it’s clear, Jane and Stephen have been able to maintain a more effective family relationship since his divorce from Elaine.
Their family connections ensure they are always tied together and this has allowed their relationship to remain strong even after all the tribulations, although it is now better described as a working or platonic relationship than what they had before.
The type surrounding the Hawking family at the moment is fascinating and gives us a closer look at one of the leading figures in modern physics and the more personal side of his life. Hearing things from Jane’s point of view is especially valuable as it gives another dimension to the story as a whole and lets us see how well the film has portrayed her autobiography in her opinion.
Interviewer: But first, in 1963 two young undergraduates bumped into each other at a Cambridge party.
[Film Clip: 00:00:08 – 00:00:56]
Jane: French and Spanish. What about you? What do you?
Stephen: Cosmologist, I am a cosmologist.
Jane: What’s that?
Stephen: It’s a kind of religion for intelligent Atheists
Jane: Intelligent atheists?
Stephen: You are not religious are you?
Jane: C of E. Church of England.
Stephen: England. I suppose someone has to be.
Jane: What do cosmologists worship them?
Stephen: What do we worship?
Stephen: One single unifying equation that explains everything in the universe.
Jane: What’s the equation?
Stephen: That is the question. And a very good question. [Laugh] I am not quite sure yet, but I intend to find out.
Interviewer: Well that was Eddie Redmayne and Felicity Jones imagining the first meeting of Stephen Hawking and Jane Wilde in the new film, The Theory of Everything. It tells a story of how Jane went on to marry the brilliant young astrophysicist knowing that he had motor neurone disease and had been given only three years to live. Together Professor Stephen Hawking and his wife Jane confound all possible expectations as the years turned into decades. And they had three children together before separating in 1990. Both went on to remarry. Stephen to Elaine Mason from who he has since divorced and Jane to a long standing friend Jonathan Hellyer Jones.
Well the film is a fascinating glimpse into their lives before and after the diagnosis and it’s based on Jane’s Autobiography Travelling to Infinity. Jane Hawking told me what it was like seeing her life on screen.
Jane: Felicity’s performance was phenomenal. She came to dinner several times when they were filming in Cambridge and I got to know her quite well, but she studied me obviously while we were talking and we talked a lot. And, when I saw her on the screen I was flabbergasted because she captured my mannerisms, my movements, my patterns of speech. Even—
Interviewer: I know when I see a snap shot of Eddie Redmayne and Felicity Jones in the wedding when you got married and an actual black and white shot of you and Stephen you almost do a double take don’t you?
Jane: Yes. Stephen says that he’s seen photos of himself as young man and Eddie side by side and he has difficulty knowing which is which.
Interviewer: And the decision to get married which was in 1965 when you were both very young seems to have been an extraordinary thing to do of your life because at that point he’d had his diagnosis of motor neurone disease and you knew that a battle lay ahead. But, you thought it was going to be quite a short battle didn’t you?
Jane: When Stephen’s father told me that Stephen had two or three more years to live at most and I felt I could devote myself to him for those two or three years. I loved him, I wanted to marry him and I wanted to do my best for him to give him every opportunity. Also though I have to tell people that we were living under the Nuclear Cloud and it only took what would take only one spark to ignite a conflagration or a Nuclear war which was going to be the end of civilisation; the end of all of us.
Interviewer: You also gave up a lot when you got married which again wasn’t unusual for women of your generation, you know, you were educated, you studied languages, you hoped for a career in the diplomatic service. You then dedicated your life to your husband and family. But, do you feel like you gave up more than other women, other friends?
Jane: Well to look at it from one perspective I think ours was the last generation for whom a home and a family were the great aims in life. On the other hand my father insisted that I finish my degree in London. So, I did finish my first degree and then I looked around for what could I do and I realised very quickly that being a wife and a mother in Cambridge was a passport to nowhere. There was no respect for wives and mothers in the academic–
Interviewer: Did you resent that?
Jane: I thought I needed to do something about it. So I started work on a Ph.D. on medieval Spanish poetry which was a lovely thing to do but it was quite difficult to manage first of all Stephen and a Ph.D. it wasn’t so difficult because we were both working together, but then when the children came along when I was looking after or playing with the children I felt I should be doing my Ph.D. and when I was doing my Ph.D. I thought I should be looking after or playing with the children. So there was a constant tension there and because of all the other things I had to do looking after Stephen of course, looking over the household. It took me a very, very long time to finish it. I finished it actually just before Tim, my youngest son, was born.
Interviewer: I mean you talk of the years of child care but you also talk of the “Stephen Care”. Now as a carer you sacrifice your own needs much of the time and it was endless caring. Did that take its toll? You described how you became a drudge in the book.
Jane: Eventually. At first we were trying to be a normal family living a normal life. I was very young. I had bags of energy and I managed, I coped. Stephen did have help from his friends and colleagues I mustn’t forget them because when he went to the department of applied math’s during the day they looked after him there and they brought him home for lunch and they brought him home in the evening. It was really after fame and fortune took hold that I began to find things very difficult. I was not as strong as I used to be. I was very tired; in fact eventually I was just worn out.
Interviewer: Because there were a lot of occasions where someone had to be with Stephen 24 hours. You’d sit up all night and you would do shifts wouldn’t you because you were worried about him?
Jane: My darling mum came over from St. Albans and she would sit up with Stephen all night when I was exhausted and then one of his very special students Bernard Carr also came and helped out in the same way. Stephen hated being in hospital he didn’t want to go into hospital and when he had to go into hospital he wanted to get out as quickly as he could. And we didn’t have a nursing team at home in those days and it meant that the family had to look after him at night with his dreadful, dreadful choking fits which was so, so scary.
Interviewer: So you were living on a knife edge weren’t you between life and death?
Jane: I described it as living on a precipice; the edge of a precipice. But, even so I said in the book that if you live on a precipice long enough you actually begin to put down roots and then a little tree grows up on the edge of the precipice.
Interviewer: It sounds like Stephen is a sort of non-confrontational person because you never discussed his illness it was like a “no go” area wasn’t it?
Jane: He would not talk about it. And I think that probably was my mistake because if when we were very young I’d insisted on talking about it, it might have been rather easier later.
Interviewer: But going back to your relationship, your platonic relationship with this lovely widower Jonathan who comes into your life having cared for his terminally ill wife. And in fact slots in really well and he is quite happy to do all the caring duties for Stephen as well and in fact–
Jane: He takes over and he helps with duties that when I was too exhausted to do myself.
Interviewer: How did you manage with loving a man who you refused to have an affair with? In the film it comes across a profound sense of duty both of you.
Jane: I felt I was committed to Stephen and Jonathan was committed as he says in the film not just to me but to the family as well. He was very lonely have been widowed so recently and he was not ready to have an affair. He was looking for some fulfilment in his life.
Interviewer: Now your relationship with Stephen ended unhappily when he had a relationship with one of his nurses, Elaine Mason who he eventually married and has since now divorced. What was that period in your life like Jane? Did you feel utter betrayal?
Jane: No, because I realised that Jonathan was in my life and I felt that Stephen had every right to have somebody in his life. But, I did want us to be able to continue as a family and I felt that Stephen needed me in his life because I knew all the routines. I cared for him. I was committed to him. I felt that he needed my protection, but evidently that is not what he and his nurse wanted. So that was actually the end of the marriage.
Interviewer: Has your relationship resolved since then?
Jane: Between Stephen and me?
Jane: Oh well we have three children and we have three grandchildren and I think that it’s very important for the family to have a sense of unity and to be able to do things together. To be able to go on holiday together, to be able to have meals on festive occasions together. And, to enjoy things like The Theory of Everything together.
Interviewer: What was it like as the years kept passing by and not to put too fine of a point on it, Stephen was still alive?
Jane: Life goes on doesn’t it? One year succeeds another and you concentrate on all the really wonderful things: your children, their success, the grandchildren and their success. And, in a sense Stephen and I had won the battle against motor neurone disease and that was a great success to.
Interviewer: Would he ever have achieved what he did without you?
Jane: Now that I cannot answer. Other people have suggested that, that might be the case, but who knows what could have happened.
Interviewer: One point in the film Stephen says to you “you don’t know what’s coming.” If you had known would you have made the same decision to get married?
Jane: I think if I had known I then would have known that I would be wanting to do things differently. I would want to be able to talk about the illness with him. I would want to be able to make better provisions. I would want to be much more careful about vetting people who came into the house as nurses and carers. So I would have wanted to have been in a strong position myself and I would have definitely wanted a lot more help.
Interviewer: I was talking to Jane Hawking and that film The Theory of Everything opened yesterday and it is very, very good indeed.
People with learning disabilities have the same interests, passions and hobbies as anybody else, accessing them however, is sometimes a lot harder than it should be. Music lovers may miss out on the opportunity to enjoy live music, simply due to their care plan or no one willing to go along to see their favourite band. Going out in the evening to listen to music, enjoy a show or a sports match should be accessible to everyone and the charity Stay Up Late promotes the rights of people with learning disabilities to enjoy a lifestyle of their choosing.
Stay Up Late Gig Buddies
Enjoying Music with Stay Up Late
Stay Up Late relies on volunteers who want to enjoy live music and are happy to go along with someone with learning disabilities to ensure they get to enjoy the same experiences as everybody else. Stay Up Late clients are matched with volunteer gig buddies with common interest so they can attend gigs together which might mean live music concerts but could also be football matches, church services and festivals.
Many people with learning disabilities live independently of their families but they are supported in their daily life by staff. This makes late night events difficult as many staff are tied down to rotas and therefore, if they finish their shift at 10pm, staying on at a gig until 11pm is very unlikely and the individual in question may need support in getting home and therefore would have to leave too.
Leaving events at around 9pm has become the norm for many people with learning disabilities according to Stay Up Late and this is clearly an example of the unfairness and inequality people are living with, simply due to their additional needs.
Live your Independent Life
Stay Up Late wants all its clients to know they can stay up late however they wish. Their Facebook page shows a wide range of events which have attracted people with learning disabilities across the country as well as those local to the charity’s base in Brighton.
Stay Up Late also assert that in addition to their voluntary scheme, support workers should be employed flexibly and be able to work different hours to allow late night events, going out in the evening and therefore ensuring people with learning disabilities can live the lifestyle they choose. Many support workers are happy to work different hours as long as they know in advance but red tape issues often stop companies from allowing this and this is something Stay Up Late want to change.
Share Passions and Interests
Music crowd with Stay Up Late
In a radio interview the man behind Stay Up Late, Paul Richards, explained the importance of the shared passions in the success of his charity. Discussing events he had attended purely because someone was needed to go, he realised just how important it was to attend events with likeminded individuals rather than just someone who’s available. Gig buddies are chosen because of their close matching interests to the clients and therefore long-term friendships are formed as well as simply someone to take along to events.
It’s also important to note that all individuals who are selected as volunteer buddies are fully checked and vetted to ensure they are safe to accompany with vulnerable adults and Stay Up Late ensure safeguarding practices are followed to the letter.
Stay Up Late and Do What You Want
Stay Up Late exists to further independence. In the interview again Paul explains how rarely you see a person with learning disabilities out at night and how Gig Buddies was setup to try and create a natural and organic process of forming friendships through shared interests and push forward the message that people with learning disabilities have every right to be out enjoying an active social life of their choosing, integrating into their chosen communities.
We think the work at Stay Up Late are doing is commendable and think their efforts should be spread nationwide to allow even more people with learning disabilities to live the lifestyle they wish, unconfined by rotas and management.
All photographs courtesy of the Stay Up Late website.
A transcript of the video is available below but has also been added as captions to the you-tube video.
Simon: Stay up late is a charity in the UK that promotes the rights of people with learning disabilities to live the lifestyle of their choice. They match clients and volunteers with common interests and then they attend gigs together everything from musical concerts to sporting events and church services. Paul Richards is the man that set up Stay Up Late and Gig Buddies.
Paul: I don’t know what the situation is like in New Zealand, but the UK there is lots of people with learning disabilities and autism who don’t get huge amount of funded support. So what happens is they end up spending a lot of time at home in social isolation. Loneness leads to all sorts of things around you know poor mental and physical health and it’s bad for communities to have people who are you know, lonely. And so, gig buddies is basically trying to deal with that problem by hooking social isolated people with learning disabilities up with a volunteer who loves the same music so they can go out to main stream gigs or whatever tickles their fancy together. For some people that is to go play sports, watch sport, somebody wants to go to church; doesn’t really matter. Say what your gig is and we’ll find someone later to go. But, generally it’s around about music.
Simon: And the critical bit here is having some sort of shared interest in that type of music because I guess you’ve got so many genres of live music happening that matching that up it would be problematic. There would be nothing worse than I guess one music fan having to go and sit for 2 hours through some other type of music performance that they actually hated and wouldn’t’ come back for more.
Paul: Exactly! Last year some of our advisory group and they are made up of people with learning disabilities, they decided that they’d like to go see the dancing on ice extravaganza at the Brighton Center [00:02:01] and I said to our project manager ‘oh do I have to go? I absolutely hate that kind of thing”. Because, I know that if you love that kind of thing the energy rubs off and if you don’t you just sort of sit there zapping everyone else’s energy away from them. So I would go and I would try to be professional and I would try to be enthusiastic, but isn’t it better to go with somebody who truly shares you passion whatever that is? And your right, that’s the hook. It’s about a shared interest but also from that it’s also finding new experiences as well. So if you think about the sort of thing you sit in a pub and you are sort of chatting with a mate and you tell him to check out an artist I’ve never heard of, you know, and it’s that stuff that you go back and you buy the record and you listen to it and it expands your horizon and so that’s part of it as well, but within what people are comfortable with.
Simon: So how do you find the volunteers, the buddies that are taking people out to these gigs because as I mentioned you have to be I wouldn’t say careful, but there must be some sort of selection criteria?
Paul: Yeah absolutely. We advertise in a variety of different places so, universities, venues themselves, a lot of word of mouth, we sort of go to events you know sort of around social care and things like that and put the word out, but also people like social workers sort of spread the word as well, but everybody gets interviewed and find out more about them. Then we do, well we are required by law to do criminal background checks on everyone, and we also give them some training. During that process some people do drop out and they realize it’s not for them or they come back with a colorful police record, and if you’ve got a police record it doesn’t mean that you can’t be involved; it does depend on what it was and when it was for to be honest.
Simon: I am sure, I am sure. Now the Gig buddies is part of a broader charity that you set up called Stay Up Late which is essentially about reclaiming the night isn’t it? For I guess as you say this community of people that are a large proportion of them don’t tend to get out at night.
Paul: There is so much stuff going on you know but I sort of sit at the pub every evening, and still where we live very few people with learning disabilities out in the evening and you know the pub is where you, well I met my mates and watch music or chat the night away and those sort of things; those natural sort of things. So that’s what we through Gig Buddies are trying to create is natural friendships so they sort of go on in their informal and hopefully they last for a long time. But yeah, stay up late started because we were frustrated, I was in a band with 3 guys with learning disabilities in a punk band it’s called Heavy Load, and we were frustrated that people were leaving our gigs just as we got on stage and it was classic spinal tap because we never ever thought that was a reflection on the quality of our performances which were an acquired taste and quite chaotic and hilarious. It was because typically people do have support, have staff who are this ridged router systems that finish at 10 o’clock at night so everybody leaves at 9 so they can be home tucked up in bed with their cup of cocoa and the staff go home, and we started challenging that saying ‘look people with learning disabilities have every right to be active social lives that we all enjoy and the stuff that defines us and makes us part of a community and they are being denied it.’ So that’s why we started it and it sort of all grown from there.
Simon: So as a Gig buddy I would join the organization and I would go through the vetting process and then I fill out some form and say ‘hey look I am really into Reggae’ or I like a bit of this or that and you would then say ‘okay look we’ve got someone over here who is interested that.’ What do I then go and pick that person up and then I am responsible for them for the evening?
Paul: Yes, well what we do is we have sort of a matching process. Our project manager she’ll be thinking when she meets people, she’ll be looking at their musical interests also where they live because a lot of the areas we work outside of Bright and it is quite rural and we pull public transport link. So it’s looking at do people live in the next village or town along and do they have a car and that sort of thing. And then, then it might sometimes be around sex or sexuality, age, it’s a whole range of things go into the mix in time which work out as well as their musical tastes which is quite a complicated thing. But then we’ll always go and support the first night out so that they get to meet at first. And then we’ll go support the first night out. So it’s sort of set up in that gentle way, and then they can go on and develop their friendship, but we sort of, we guide people through that because we are fully aware that people have anxiety around going out with somebody with a learning disability and most of our volunteers are new to supporting people with learning disabilities. So you know we talk through maybe a few of the potential support issues. There might be that someone is anxious in crowds and noisy situations and things like that and what you do in situations where somebody’s experiencing anxiety and different things like that. Yeah, so we don’t just leave them to it we sort of… – and then we offer them ongoing support as well so if they are having some doubts or problems we’ll meet with them and chat through things with them.
Simon: Paul Richards is the founder of Stay Up Late and there is more information on our website right now.
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