Category Archives: Community

Snooker, skiing and smuggling in cider – lessons from a long-stay hospital

A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.

Guest post by Joe Peacock, heritage project coordinator, CASBA

Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.

Roland spent almost 15 years in institutional care.

Former Monyhull Hosptial resident Roland Clewley today

Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”

This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”

Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.

He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.

“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”

He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”

He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.

He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.

Roland Clewley winning a snooker competition (photo: CASBA)

Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”

Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.

In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.

Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.

The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.

• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here

Social Issue opinion piece: learning disabled people should have equal access to heritage and culture

Amber Okpa Stother leads a creative workshop (photo: Martin Livesey, Venture Arts)
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?

This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.

“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.

Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.

On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.

“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.

This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”

In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”

So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.

Here’s what Amber thinks about her experiences with VA so far:

At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.

People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.

Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.

I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.

On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.

Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.

I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.

Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.

My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.

It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.

Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.

I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.

Find out more about the Venture Arts symposium here or follow on Twitter, Instagram or Facebook.

Venture Arts symposium is on Friday 25 May in Manchester.

Diversity in dance: Fusion at Sadlers Wells

Fusion, by Step Change Studios (photo: Daniel Lowenstein)
Everyone can dance, says Step Change Studios founder Rashmi Becker.

After seeing the dance company’s showcase at Sadlers Wells last night, I’d add that everyone should see its artists perform.

Fusion, Step Change Studios (photo and all photos below: Stephen Wright)

The one off event, called Fusion, was the UK’s first inclusive Latin and ballroom-inspired showcase, partly inspired by Rashmi’s experience of growing up with an autistic sibling.

Rashmi says: “Dance and music played an important role in our interaction, communication and creativity. As an adult, my passion for dance, particularly ballroom dance, continued, but I found limited inclusive opportunities. Step Change Studios is my response.”

Supported by Sadler’s Wells, Arts Council England and the Dance Enterprise Ideas Fund, yesterday’s programme included a free wheelchair ballroom masterclass with world champion Pawel Karpinski. The post show discussion focused on the need for more genre-busting inclusive events like Fusion. As well as “showing what’s possible”, as one audience member said, it challenges people’s perceptions of disability.

Fusion, Step Change Studios
Fusion, Step Change Studios

But this wasn’t some worthy event with the creative bar suddenly lowered because its A Good Thing To Do. This was in turn innovative, expressive, playful, sassy, beautiful and infectious and a reminder of what can be achieved with ambition, forward-thinking arts programming and commissioning and reasonable adjustments (to method – not to quality).

Launched in 2017, Step Change Studios enables disabled and non-disabled people to dance and in the last 12 months has held events for more than 900 disabled people including sessions in schools and arts venues.

Fusion, Step Change Studios
Fusion, Step Change Studios

You can see more of Step Change Studios’ work in this previous post or this recent Guardian photo gallery

Fusion, Step Change Studios

Making buses more accessible for learning disabled passengers

For Mario Christodoulou, buses are essential. “I use buses every day to get to work and to the shops – it is my only way of travelling,” he says.

Christodoulou, from south-west London, is a peer advocate at learning disability charity Kingston Involve. As part of his work championing the rights of learning disabled people, he is involved in the Transport for London (TfL) Big Day Network, which holds learning disability awareness days in bus garages, bringing together learning disabled Londoners, their support staff, bus drivers and managers.

The network has 50 members from self-advocacy groups in London – 37 people with learning disabilities and 13 supporters – and has run events at 15 of the city’s 80 garages over the last three years in partnership with George Marcar, a TfL driver communications manager, surface transport. Discussions are held in a stationary bus, which helps people to visualise the issues raised.

Areas of debate include confusing signage or drivers being unaware of so-called “invisible disabilities” – to find out more, read the rest of my article in the Guardian.

A stepping stone to success: new mental health support for women

Being able to do her own washing and having responsibility for her personal possessions symbolised the freedom Michelle Stevens* wanted but was denied in institutional care. Stevens features in my latest Guardian article (screenshot above). Her severe mental health problems meant she was in and out of residential care and mental health wards for a decade. She recalls staff shouting at her and living circumstances that were “very closed up and not nice at all”.

Today, however, Stevens says she is “much happier and freer”. She has a bedroom in a large double-fronted Victorian house – and she loves the garden at her supported living home in West Norwood, south London, which is run by social care provider Certitude. “[It] is cleaner than other places I have been, and has nicer facilities,” says Stevens.

She enjoys socialising – with the 11 other residents and locally – and for the first time in three years, she does her own washing and is trusted with her belongings.

The women-only housing is designed for those with enduring and complex mental health issues who may be stuck in restrictive environments. Certitude provides support while First Priority, a housing association, manages the tenancy agreements. The home opened in September 2016 and residents, who are mostly in their 30s and 40s, benefit from individualised support that is rarely offered in residential or inpatient care.

I’m really grateful to all the women who shared their experiences for the story and talked about the “good road ahead”, as Michelle put it, which now seems to be ahead of them. Read the rest of the article here.

*Not her real name

What would a truly accessible city look like?

Sweetwater Spectrum, austim-friendly housing in Sonoma, California (pic: Leddy Maytum Stacy Architects)

By 2050, an estimated 940 million disabled people will be living in cities, lending an urgency to the UN’s declaration that poor accessibility “presents a major challenge”.

The Convention on the Rights of Persons with Disabilities and laws like the Americans with Disabilities Act, the UK’s Equality Act or Australia’s Disability Discrimination Act, aim to boost people’s rights and access. Yet the reality on the ground can be very different, as Guardian Cities readers recently reported when sharing their challenges in cities around the world.

Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.

Cities benefits from accessibility; one World Health Organisation study described how people are less likely to socialise or work without accessible transport. Cities also miss out on economic gains; in the UK the “purple pound” is worth £212bn , and the accessible tourism market for disabled visitors is worth £12bn.

My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.

For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.

Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”

Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”

Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”

In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.

Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.

And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.

Ed Roberts Campus – a fully accessible building iN Berkeley (pic: Leddy Maytum Stacy Architects)

No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.

Read the full piece in the Guardian here.

Community approach to social work delivers more personalised care

If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?

This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.

Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas

Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.

Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.

A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.

Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.

The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.

At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”

Read the rest of the piece here

*not her real name

Helpline for older people: a friendly ear to 10,000 lonely callers every week

Anxiety and mobility issues mean that 76-year-old Anna Bolton* is usually housebound. But regular calls to a free, confidential helpline for older people have helped her “feel normal”.

Bolton’s mental health deteriorated after she was widowed two years ago. Although she has had some support from local mental health counsellors in her native north-east England, help from Blackpool-based The Silver Line was “invaluable” and more immediate than waiting months for a counselling referral.

The Silver Line, created in 2013 by Esther Rantzen (who also created Childline), is a free, 24-hour, 365-day-a-year helpline offering information and friendship, and signposts people to local organisations for support or social activities.

“There’s still stigma about mental health,” says Bolton. “It’s often easier to speak to a stranger, and nice to know you can call day or night.”

Bolton, who has no family nearby, contacted the helpline after it was mentioned by a receptionist at her GP surgery. She is among the 10,000 people who call the helpline – often referred to as the Childline for older people – every week.

For my full report on the charity and the rise in mental health issues among older people, see the Guardian social care pages.

Fresh perspectives on social care: a new exhibition

What does someone who is supported by social care look like?

Transforming stereotypical perceptions of social care is the aim of a new photography exhibition showing in London this month – some of the featured images are shown below.

SELF Season 2 is a collaboration between photographer Dean Belcher and social care provider Certitude.

Everyone featured in the exhibition is either connected with Certitude or with activities offered by Age UK Hounslow, west London. The project’s ambition is to use imagery “to depict the commonalities between people within social care rather than reinforcing the often-imposed barriers and roles that people are given”.

The new show follows the success of an exhibition (SELF: Portraits in Social Care) held in Brixton earlier this year.

* SELF: Portraits in Social Care is running until Thursday 28th September at Montague Hall, 30 Montague Rd, Hounslow TW3 1LD, Monday to Friday 3pm – 5pm. For further details, contact jmeyer@certitude.org.uk

Murals with a message need a new home

The access for all mural, east London (photo: Vision)
Para athletes mural, east London (photo: Vision)
Para athletes mural, east London (photo: Vision)

The public is being asked to suggest permanent homes for a trio of murals created to highlight disability issues.

A group of disabled artists, the Vision collective, created the collaborative art boards which have been displayed for a limited time on the Shoreditch Art Wall, east London, to mark the recent World Para Athletics Championships. The collective’s mission is “to inspire artists with disabilities to have an integral voice in their community through their artwork”.

Murals with a message on display in east London (photo: Vision)

A fourth mural, created with children supported by the Action for Children charity, is earmarked for use by the charity.

The murals are up until this Sunday, and the artists are inviting ideas for their relocation. The Vision group’s facilitator, Sarah Hughes, says: “We feel they are suitable for play areas, shared community space, special schools, hospitals, the Olympic Park- there are lots of possibilities.”

The Vision artists include Michelle Baharier, Dawn Barber, Dwain Bryan, Julie Cordell, David Elton, Lynda Evans, Lorraine Peacock and Sandra Pink.

For more information see the website or to suggest a location, contact sarah@murals4mankind.org