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Stay Up Late: Enjoy Gig Life Independently

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

Music with Stay Up Late

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 at Stay Up Late

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.

Video Transcript

The video was created using the NZ Radio interview and the mp3 can be found here

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.

World Toilet Day – Accessible Changing Rooms Campaign THE BIG SQUAT

 World Toilet Day and The Big Squat Event

World Toilet Day

World Toilet Day

World Toilet Day takes place on November 19th and focuses mainly on the sanitation needs in developing countries. It highlights how important toilets can be and how they can truly make all the difference in the battle against disease and widespread infection. However, we’re looking at a campaign closer to home and one which has a huge impact on the lives of people living with disabilities in the UK. The Changing Places campaign is staging an event as part of a worldwide awareness raising efforts called ‘The Big Squat’.  

Changing Places

Changing Places is a campaign which is pushing for the installation of accessible changing rooms in a range of public places across the UK. There are many reason why properly accessible changing rooms are essential and many people living with different disabilities need more support and space to be able to toilet in public places comfortably.

Currently standard disabled toilets do not meet the needs of all people living with disabilities and their carers or support staff. People living with profound and multiple disabilities including learning disabilities, spinal damage and acquired brain injury often find themselves needing additional facilities to be able to comfortably utilise public toilets.

Changing Places toilets are different and provide initial facilities and apparatus to allow for easier usage.

Changing Places Toilets

Changing Places toilets provide the right equipment, enough space and a safe and clean changing environment. The equipment provides will either be a height adjustable adult-sized changing bench and a fully functional tracking hoist system or mobile hoist where this isn’t possible.

The changing areas will also have enough space for the disabled person as well as up to two carers and the toilet will be centrally placed to allow for support from carers on either side. Curtains or screens are also fitted so the disabled person and carer can have some privacy during the change.

The safety and cleanliness is provided by tear off paper roll to cover the bench before use and a large waste bin to allow for the disposal of pads. The floors are all non-slip to avoid any other accidents or risks.

Where do we want them?

The Changing Places campaign want to see their unique and potentially life changing toilets installed in all large public places. Their list of places includes:

• city centres
• shopping centres
• arts venues
• hospitals
• motorway service stations
• leisure complexes
• large railway stations
• airports

They also highlight that these new changing facilities should be installed in addition to pre-existing accessible toilets and not as a replacement. We definitely agree and think accessibility to comfortable toilets should be a basic right for all. Below is a case study looking at one mother and daughter who definitely see the need for accessible Changing Places toilets in every possible location.

Bethan and Lowri – A Case Study

Bethan is the mother of two daughters, Elin and Lowri, and the youngest, Lowri, lives with Retts Syndrome. Retts Syndrome means Lowri needs support with all her daily activities as she has no independent mobility. She uses continence pads for comfort and Bethan, Elin and Lowri were all pleased to have the chance to enjoy a happy family day out thanks to a Changing Places toilet.

The mum and daughters were able to enjoy a day out in Nottingham City Centre including shopping, lunch and a show at the local theatre. Nottingham City Council had the initiative to install a Changing Places toilet which allows for Bethan to help her daughter with her toileting needs without stress or difficulty, utilising the specialist hoist and changing equipment.

Bethan highlighted that without the Changing Places toilet there days out were very different as they had to plan their days out around specific times, ensuring to be home for mealtimes as Lowri would need to go to the toilet and they simply wouldn’t be able to change her comfortably in regular disabled toilets, as it would involve lying her on the floor. My own son Joe, has Dravet Syndrome and cannot be changed in most toilets. We had our vehicle specially adapted with a bench, curtains and a small hoist because of this issue.

Changing Places have taken Bethan and Lowri’s story as a great positive and use them regularly in their campaigns to show the importance of their toilets for whole families as well as individuals. This video tells a little more about their story:

(Full Transcript Below)

Take Part In the BIG SQUAT for World Toilet Day

logo for the big squat

The Big Squat event will be at 12 noon on 19 November

As part of World Toilet Day activities on the 19th November, the World Toilet Organisation (WTO) has launched The Big Squat- a movement for the toilet-less

To help raise awareness of the 2.5 million people worldwide who do not have access to sanitation, the WTO is asking people to squat for one minute in a highly visible location at 12 noon. Download the WTO toolkit for organising your Big Squat and don’t forget to share your photos via the Big Squat flickr group or by emailing them to WTO

The squatting exercise is highly symbolic of the problems faced by many people in the developing world, where a lack of toilets forces people to squat in fields, in the bush, along train tracks, or in other open places. Open defecation is a major problems: it spreads disease, resulting in over 1.8 million deaths from diarrhoeal disease every year. It also affects women’s wellbeing and safety: in many developing countries, women are forced to relieve themselves either before sunrise or after sunset, causing them immense discomfort and inconvenience as well as putting them at risk of rape and other attacks.

In the UK the Changing Places campaign will be using the Big Squat to help highlight the need for Changing Places toilets in public spaces in order to meet the needs of the 230,000 people who need additional support and appropriate facilities in order to use the toilet.

Some of their campaigners in London will be heading to the Queen Elizabeth II Olympic Park in Stratford to do a very public mass squat.  We also think this is a great opportunity to celebrate the availability of Changing Places facilities at the park and the accessibility legacy left behind by the London 2012 Olympic and Paralymplic games.

World Toilet Day Aids

The Uriwell Family

The Uriwell Family

At Living with Disability we regularly discuss the importance of dignity and independence in personal care and toileting. We have highlighted some of the many useful gadgets and aids on the market which can help in those awkward moments and reduce anxiety and fear for people who may find toileting problematic.

One of our favourite products comes from Uriwell as they cater for every member of the family and can be a great aid to keep to hand if you often find yourself in situations where your bladder gives you little warning. It’s also very valuable for helping young children who are learning to use the toilet.

On the theme of toilet training for younger children we also rate the Game of Pee which adds a bit of fun to the process. The game includes a Happy Pee and the game comes with different faces for the Uriwell as well as an educational booklet that can be coloured in. A wall chart allows you to mark your child’s progress and help them feel a sense of achievement as they move up the steps. The range has even expanded to include the Happy Poo and so toilet training really can be simpler than you thought.

World Toilet Day and the UK Changing Places campaign needs your support and we’re hoping after reading this you might take part in the Big Squat! (#BigSquat or contact  @CP_consortium on Twitter)

 Video Transcript

00:06 Speaker 1: My name is Bethan, and this is Lowri who is my 10-year-old daughter. Lowri is profoundly disabled. She has a condition called Rett syndrome. And she is completely dependent on us for all her activities of daily living. Lowri wears incontinence pads or nappies and so obviously, we have to change her during the day and in an ordinary disabled toilet that involves putting her on the floor because she is getting a big girl, and it’s no joke to manhandle that. You’ve got to keep her hands off the dirty floor ’cause the next place they’ll go is to her mouth. So, that’s why we need Changing Places toilets. We’ve got to get her onto this height adjustable table, so that’s either lift but ideally you want some kind of an equipment to help you with that because really you do far too much lifting. So, a ceiling track hoist is really ideal. It’s changed our life in the sense that coming to Nottingham for a day out, we can come here, we know it’s here, we can plan our whole day.

01:06 S1: When there’s a Changing Places toilet, it just increases the length of time that you can spend somewhere, and it means you are not time limited, you haven’t got that worry about how long am I going to be out? Where do I go next? If you know that there is a decent facility, then you can build that into your day, and it just takes the pressure off you. The Changing Places campaign is really important for people with profound and multiple learning disabilities and their family. I see it as being the next step. We’ve got standard accessible disabled toilets everywhere these days, everybody expects them. We’ve got baby changing everywhere and it’s expected. I think that having Changing Places toilets is the next step.

Low Tech Lifesavers: Weighted Blankets

Low Tech Lifesavers: Weighted Blankets

weighted blanket bed covering in pink,looks like a duvet or sheet

Weighted blankets come in many colours and patterns and look very much like ordinary bed coverings

Weighted blankets are heavy, specially made bed coverings. They use sewn-in bags of sand or other dense materials to make the covering heavy. They are mostly used for children with autism but be used to calm people with dementia or for other neurological conditions. They help children sleep and can help with tics and involuntary movements and conditions like restless leg syndrome.

This is another post inspired with thanks to @touretteshero. One of her fab blog posts led us to this product which we really believe deserves a mention on Living with Disability. The product in question is the use of weighted blankets, a simple invention which provides a carefully determined amount of pressure during sleep to help control any involuntary movements. They can improve the sleeping patterns and experience for those who have a number of different conditions.

Like the post on wrist straps, Tourettes Hero’s blog post, describes a product that has helped her get on with her life. She discusses how it helps provide some resistance to her tics but also mentions how the product was already on her horizon as she had seen them in use with autistic children. People who have an autistic spectrum disorder can have extreme difficulty sleeping due in many cases to proprieoceptive imbalance and even experience insomnia.  A weighted blanket can significantly improve these problems and they can also help in the day time to help control the stimming that is related to autistic spectrum disorders.

tourettes hero who inspired this post about weighted blankets

Tourettes Hero with a heavy sleep aid…sorry, wrong pic, I mean with the marvelous Stephen Fry ;-)

So, what does a weighted blanket do?

Many of us have experienced the comforting feeling of heavy eiderdowns or blankets, maybe at grandparents as a child or the feeling of being ‘tucked up tightly’ with sheets.  A weighted blanket provides what’s described as ‘deep pressure’ which is found to be calming and comforting especially for children on the Autistic Spectrum as research suggests they seek this deep pressure and want to be covered under several layers. With a weighted blanket, several layers aren’t needed and there is no risk of suffocation etc.

A large specially made heavy bed covering can be used at night to aid sleeping. Many families have said that using weighted blankets has given their child the first uninterrupted night’s sleep of their lives. They can help the child relax and feel comfortable in their bedroom. As well as large blankets there are a range of smaller products and lap pads which are designed for day time use, even in classrooms and at the dinner table. A weighted lap pad is designed to promote calm behaviour, enhance focus and concentration and also allows for further learning and comprehension if used in schools.

This video shows reviews on brand of weighted blankets and shows their uses:

For more info about the weighted blankets for sale on Amazon, click the box above.