How to make people with learning disabilities feel more included in society

Image: Accessible music technology OpenUp Music/Youth Music Network

This guest blog was written by Val Williams, Professor of Disability Studies at the University of Bristol.

People with learning disabilities can often find themselves feeling excluded when it comes to making decisions about their lives. This can range from everything, from shopping to making music or even bringing up a baby. Sometimes this exclusion can be exacerbated by the kind of support that they receive from social services – but it can also be countered by sensitive personal assistance or support.

In a recent research project, which brought together disabled and non-disabled researchers, we looked at ways to improve this – and how to include people with learning disabilities in decisions.

Part of the project found that by taking active roles in the arts, people with learning disabilities can lead the way towards meaningful inclusion. Beth Richards, an actress with learning disabilities, led part of the research about people with learning disabilities on TV. She found that actors with learning disabilities are often limited to roles which depict the “disability”, the tragic or dependent life of the character, or their effect on others around them. A successful actor with learning disabilities, for instance, told her:

“I wish TV makers would think more creatively and give people with learning disabilities any role – romantic, fantasy, comedy, shop assistants, office workers. I’d like to play James Bond, Romeo, Dobby in Harry Potter or a detective or many other roles.”

The Queen’s Birthday Honours in June 2018 include an MBE to the actress with Downs Syndrome, Sarah Gordy, for her “services to the arts and people with disabilities”. As Gordy said upon receiving the award, “diversity is an opportunity, not a problem”. She is good proof of that.

But there is a lack of accessible information. There is no shortage of talented actors and drama companies supporting people with learning disabilities, but the TV industry and its workings are still shrouded in jargon. Processes such as commissioning, auditioning and scriptwriting tend to exclude those who do not have someone to help them navigate all this.

In another part of the research, my colleague Marina Gall looked in detail at how music making can be transformed by the Open Orchestras approach in which young people with multiple and complex needs are enabled to learn musical skills, play in ensembles and become music makers. A new technological instrument – the Clarion – can be played on computers and iPads, using one’s hand, a small sensor on any part of the body, or via a person’s gaze. It can be adapted to suit most students’ physical needs.

One of the co-founders of Open Orchestras, Doug Bott, told our research team, that the approach is “personalised around the individual young person”. But at the same time, it’s trying to ensure that music is an important part of the curriculum for all young people, and has been immensely successful in changing perceptions of people with learning disabilities. This is not therapy, it’s a route to making music and to performance.

Making decisions

People with learning disabilities also face inequalities and problems in the NHS, as well as in a cash-strapped social care system. For instance, since the Mental Capacity Act 2005 came into force, support staff are legally required to support people with learning disabilities to develop their own capacity to make a decision. What we saw in our data was that people with learning disabilities can be proactive in seeking out this support – and we recorded conversations with personal assistants where people wanted to talk about decisions relating to safety, health or simply about future cooking plans. The skills that a personal assistant needs to have are to listen, look out and be responsive to the people they are supporting.

One of the key messages from our project is that health and social care practices sometimes get stuck. We used the word “institutionalised” for those times when professionals stick to a rigid and inflexible way of doing things, leaving the disabled person without the power to have a voice.

These difficult moments were also highlighted by actors with learning disabilities who helped to interpret our data. Our research benefited from a collaboration with the Misfits Theatre Company in Bristol, showing how sensitive interactions between people with learning disabilities and their personal assistants were often the trigger for good decisions, and giving those with disabilities a feeling of control over their own lives.

But quite small comments can create problems, spoiling an empowering relationship. The theatre company made a brilliant video called A Good Match about their own perspectives and experience of managing relationships with a personal assistant. One of the Misfits actors said: “It’s my house … and I don’t want my (personal assistant) telling me what I can and cannot do.”

 

After looking at a range of activities that can exclude or include people with learning disabilities, we concluded that inclusion happens when three things come together. Sometimes people with learning disabilities are included because of changes to technology, as in the Open Orchestras approach. At other times, they are included better because of new ways of doing something, or through new skills that they may learn – as actors, or as TV performers.

The ConversationBut at the heart of all this is a new belief in the equal value of people with learning disabilities. This is why we recommend that social care services need to focus less on what people cannot do, but instead promote a genuine belief in what people with learning disabilities can do – with the right support.


Val Williams is Professor of Disability Studies at the University of Bristol.

This article was originally published on The Conversation website and has been republished with permission under a Creative Commons licence. Read the original article.

‘Agent of Change’ protects music venues from noise complaints, but won’t stop them from closing

This guest blog was written by Marion Roberts, Professor of Urban Design, University of Westminster.

A Conservative minister for housing, a grey-haired Labour MP, ageing icons of rock and creative young people have formed an unlikely alliance in support of the Agent of Change (Planning) Bill. The proposed law, which will be discussed for the second time in the House of Commons on March 16, makes developers responsible for dealing with noise issues when they build new homes near music venues.

This all came about because people were worried about the high number of live music venues that were closing across the UK. The Greater London Authority (GLA) asked for a report on London’s grass roots music venues, only to find that 35% of them had been “lost” since 2007. Cities across the nation – from Glasgow to Manchester – have similar stories to tell, even though the government has recognised how important the music industry is for the economy.

So how did this happen? Many different governments since around the year 2000 have tried to get more flats and houses built in cities, because there aren’t enough for everyone who wants to live there. Many homes have been built on “brownfield” sites – where there used to be factories or warehouses, which are now used less or not at all. These types of places also offered spaces where creative entrepreneurs could set up new clubs, or take over existing venues and attract new customers with the offer of live music.

Buyer beware

But as people move into the new flats built on these sites (which they often pay a lot of money for) some inevitably complain about the noise coming from the venues. Venue owners in Shoreditch (one of London’s hip neighbourhoods) actually put up signs warning would-be buyers that there are live music venues in the area.

Up until now, these complaints caused big problems for music venue owners, because planning principles were not on their side. The onus was on them to ensure their neighbours weren’t disturbed by music and loud noises. But putting in proper soundproofing or keeping customers quiet can be difficult and expensive.

This doesn’t just affect the kind of places run on a shoe string on the outskirts of town. Even London’s mighty Ministry of Sound – which has been a mecca for House music lovers since 1991 – was caught up in a lengthy planning application for a tower block of flats nearby – a case which eventually ended in the flats having to be soundproofed.

A matter of principle

The way the planning system works, is that local authorities in England and Wales produce their own development plans, which must align with national policy as set out in a 2012 document called the National Planning Policy Framework (NPPF). This document made a small move to protect venues, by saying that if they wanted to expand, then there should be no unreasonable restrictions. But it didn’t address the situation described above.

Some local authorities have already started to draw up their own policies, which put the burden of noise reduction measures firmly on the developer who is making the change – whether it’s for flats or other uses. This is the legal principle, known as the “Agent of Change”. The bill, now supported by government, will ensure that the principle is embedded in the NPPF – so all local authorities will have to follow it. It will also carry more weight in appeals against planning decisions.

Although the “Agent of Change” principle will help prevent live music venues from closing, it won’t be enough on its own. Sadly, it would not address other issues such as rising rents, hikes in rateable values and property owners preferring to redevelop their buildings into flats. For example, consultancy firm Nordicity estimated that a revaluation of business rates would cause a fifth of London’s grass roots venues to close. And London’s oldest LGBTQ venue, the Royal Vauxhall Tavern, is still engaged in a battle to save it from redevelopment, by way of a community buy out.

Yet past examples show that people can save their local pubs from closure, whether through local campaigning or by taking ownership of the buildings. And to see creativity and culture, especially for young people, supported through the dusty corridors of parliament, is truly heart warming.


Marion Roberts is Professor of Urban Design, University of Westminster.

This article was originally published on The Conversation website and has been republished with permission under a Creative Commons licence. Read the original article.

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“All it takes is one song to bring back 1,000 memories”: using music therapy in dementia care

unsplash-ipod-music

Earlier this month, it was reported that dementia had overtaken heart disease as the leading cause of death in England and Wales. And caring for those with dementia is becoming the major social care challenge of the 21st century – over 1 million people in the UK are expected to have dementia by 2021.

Despite significant research into the condition, there are no long-term cures. As a result, health and social care teams, and researchers into the health and well being of older people, have started to promote non-pharmacological ways of alleviating symptoms and reducing distress to the patient and their family.

Many of these techniques are widely accessible, require little to no formal care training and can take place either in the patient’s own home or in a care home setting. One of these techniques is the use of music as a form of therapy. While specially trained dementia and Alzheimer’s music therapists exist to give formal therapy, carers and family members can also use music to help improve the quality of life of a person suffering from dementia or Alzheimer’s.

Benefits of music therpay in dementia care

Research and experiences from practice regularly show similar outcomes when using music with dementia care patients. The benefits that are consistently highlighted include:

  • Music evokes emotion and this in turn can evoke memories which can help sufferers and family members to connect together.
  • Musical aptitude and appreciation are two of the last remaining abilities in dementia patients – it is one of the first cognitive skills we develop as new-born children and is one of the last things to leave us in degenerative cognitive diseases.
  • Music can bring an emotional and physical closeness the association that a patient makes with a song can encourage them to complete actions such as dancing or hugging which they associate with that piece of music. It can also enhance feelings of security and safety among vulnerable patients.
  • Singing can be used as a way to engage and to encourage people to express feelings, even if it does not include words or sentences. It can be a way to encourage participation and socialisation, as well as stimulating brain activity, dexterity and physical activity if actions are also introduced to go along with the words.
  • Music has been proven to stimulate the release of hormones which gives it the ability to shift mood and manage stress.

“Come fly with me … Let’s make a cup of tea”

One project from Purple Angel music has rewritten and altered the lyrics to some well-known songs which are loaded onto an iPod and can be placed in a person’s home to remind them to carry out day-to-day tasks such as eating and drinking, locking their front door, turning off their fire and showering.

The pre-loaded iPod, which comes in a number of musical genres, contains two 12-hour tracks  one which plays the lyrically-amended songs at two hour intervals throughout the day to act as a reminder service, and the other which is 12 hours of silence, designed to allow the patient to sleep without having to remember to turn off the iPod.

Examples of the altered tracks include:

  • L.O.V.E,  I’d love a cup of tea a song to encourage rehydration via a cup of tea
  • That’s Amore, That’s a bath day a song to encourage taking a shower or bath
  • Let There be Love, Let there be lunch a song to encourage eating
  • Can’t take my eyes off of you – a song to encourage night time requirements, like locking the door and turning off the fire.

A playlist for life

In August 2016, the Care Inspectorate backed a scheme called ‘playlist for life’ which encourages care homes to integrate music into their care for patients with dementia. Moving beyond just allocating a time to place headphones onto a patient and leaving them to listen alone (although at times this may be helpful too), the aim is for music to be a vehicle for connected care. It allows carers to use music as a tool to find out more about the person they are caring for and encourage them to engage through the music.

“Music can reveal previously hidden aspects of the patients to their carers; likes and dislikes, talents and memories – it all helps piece together the jigsaw of an identity obscured by illness.”

As the video above shows, using music can also be a way for family members to re-engage with the person suffering from dementia. It also  allows them to feel like they are directly involved in a positive element of care, as they are often invited to create the playlist, using songs that they know will evoke specific memories or emotions for the patient, and then listen along with them, interacting as they do so.

Similarly, Music for Life, a project run jointly by London’s Wigmore Hall and the charity Dementia UK brings specially trained musicians into care homes to work with patients, carers and family members in group and 1-2-1 sessions, creating and listening to music. Musicians, care home staff and managers meet after each session to reflect on what they have learned about the patients – knowledge that helps in future care and treatment.

Music as a communication tool

Formal research has supported the use of forms of music therapy, whether they be formally delivered by trained specialists or integrated into day to day caring by family or social carers. As mentioned above, research has demonstrated the positive effect it can have, both on the patient but also on their family.

Over 800,000 people currently live with the condition and roughly 25 million people  nearly half the UK population  are affected by it through knowing someone with the condition.

Music offers a way to care for people suffering from dementia in a sensitive, person-centred and cost effective manner. It can also be a vital tool to support families who can reconnect with their loved ones through a piece of music, even when other forms of communication have become difficult.


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Striking a social chord: music in community engagement and regeneration

by Laura Dobie

dj decksThe 2014 Commonwealth Games are drawing to a close in Glasgow, and in addition to all the sporting action that is taking place in the city, the Games have acted as a catalyst for a wide range of cultural events. Perhaps one of the most ambitious in scale was the Big Big BIG Sing, which took place on Glasgow Green on 27th July, with a day-long programme of varied events, from beatboxing to Gaelic singing. In this article, we take a closer look at the Big Big BIG Sing and a couple of other projects in local communities across the UK, which are putting music centre stage in community engagement and regeneration.

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