Category Archives: Disability

Lizzie: people should see me with no limits, no barriers, no name tags

Lizzie in the studio
Lizzie in the studio

It’s no surprise that soul singer Lizzie Emeh has called her forthcoming second album See Me: “I want people to see me and accept me as I am. I want people to see me as a disabled person with no limits, no barriers, no name tags. I want to inspire other people with disabilities, for them to say– if she can do that, so can we. People with disabilities are always told, you can’t do this, you can’t do that. I want to change all that!”

Lizzie became the first person with a learning disability to release an album in 2009, now she hopes to complete her second, breaking new ground by using crowdfunding to produce it. Lizzie’s first album, Loud and Proud, took three years to make, produced with the support of arts organisation Heart n Soul, which she is still working with.

Lizzie, who was never expected to walk or talk following complications at birth, has performed at Number 10 and at the London 2012 Paralympic Games Opening Ceremony. She is hoping for more donations ahead of her crowd funding deadline for donations on Saturday – this week has been the final push for support. You can find out more and see Lizzie talking about her work and what her second album means to her here.

Singer Lizzie Emeh

Heart n Soul’s long-running multimedia club night Beautiful Octopus takes place on Friday 13 September on London’s Southbank, with live performances, DJs and “interactive zones” where the audience can participate in the music, dance and other art-related events and activities showcased.

* To donate to Lizzie’s campaign for her second album, see this link

A huge percentage of the population without redress – that is dangerous

The government’s plan to slash £220m from the UK’s legal aid budget has rightly been condemned for its sweeping scale but, in this series of interviews I’ve done for the Guardian, the very human impact – the effect on the individual – is laid bare.

Under the proposals, victims of miscarriages of justice like Gerry Conlon, one of the Guilford Four, or Mark Neary, who fought his local council’s decision to send his son into care 300 miles away from home, would never have brought their cases before the courts.

Legal aid has helped to right countless wrongs since its inception as part of the post-war welfare state but the plans for change render it unrecognisable and inaccessible.

Legal aid, and the individual’s right to challenge authority and unfair decisions is a bedrock of the British legal system, often described as “the envy of the world“. Dismantle that foundation, and, as the people and families I spoke to for today’s piece make clear, you increase the likelihood of wrongful convictions and greater unrest among the prison population, and you give the authorities carte blanche to bring in sweeping changes (to welfare, for example) with impunity.

The government’s Transforming Legal Aid proposals include new competitive tendering of solicitors’ contracts and a fixed fee system which, say lawyers, will preclude many from bidding for work and force them out of the market. The government will also prevent prisoners from using legal aid to challenge their treatment inside (see the words of ex-offender Leroy Skeete in the Guardian piece to see what effect this could have) and a new residency test will withhold legal aid from trafficking victims or those recently arrived in the UK who suffer domestic abuse.

Justice secretary Chris Grayling is due to give evidence this morning to the justice select committee regarding the price competitive tendering proposals in his Transforming Legal Aid consultation.

As reported, Grayling has said in a statement: “I have always been clear this is a genuine consultation and I will continue to listen to views.” (He may listen – but will he act on what he hears?) He may be dropping his plans to remove defendants’ rights to choose their own solicitor but, while the safeguarding of choice is welcome, that choice is useless if the pool from which to chose dries up. In addition, if the system is so restricted under the changes that would-be claimants don’t get permission to launch appeal cases anyway, they won’t even get as far as having to make a choice.

Below are two more testimonies which explain just what a difference legal aid makes – and what would happen if the changes go through:

Blessing (not her real name), 36, a domestic worker from Nigeria:
“My employers hadn’t paid me properly, or paid any tax, for the nine months I worked for them. I was paid £250 a month and worked seven days a week. I never had rest days or fixed hours. They called me to work at any time. I normally started working at 7am and would work until after 11pm as my employers would return home late and expect me to cook for them.

During the day I looked after their children and cooked and cleaned. At the weekends I also had to clean my employers’ business. It was hard work and I had no life of my own.

Legal aid helped me to go to court for an employment tribunal and win. I won my claim to be paid the national minimum wage for my work.

Without legal aid I wouldn’t have got anything. I didn’t know how to help myself. I didn’t know about my rights in the UK until I went to Kalayaan, which advises migrant domestic workers. They explained my rights to me and were able to find me a lawyer to take my case.

My case shows that domestic work is real work and that work in a private household should have proper hours and be fairly paid – like any work.

The proposed residency test under the legal aid changes will stop people like me from getting help [the proposals mean applicants need to be lawfully resident in the UK and to have lived here continuously for at least a year at some stage]. This is on top of new immigration rules that mean domestic workers are given a tied migrant domestic worker visa, the rules of which also makes getting help impossible [the visa means migrant domestic staff in private households cannot change employer or stay longer than six months].

Employers will be able to treat these workers however they like as they will know that they won’t be able to challenge any mistreatment. Many are not paid at all for many months work in the UK. With no legal aid they won’t be able to do anything about this.”

Tracey Lazard of deaf and disabled people's organisation Inclusion
Tracey Lazard of deaf and disabled people’s organisation Inclusion

Tracey Lazard, chief executive Inclusion London, a pan-London Deaf and disabled peoples organisation:

“Disabled people need access to justice now more than ever.

Entitlements to independent living and social care are being dismantled and reduced and the right to challenge is through judicial review – and that, to all intents and purposes, is going to be removed [the reforms make it harder to bring a judicial review].

Increasingly, local authorities are – in order to make budgets work – squeezing individual care packages…it’s only when a disabled person’s legal aid lawyer threatens the local authority with action, do we see them carrying out statutory duties.

It’s less likely that public bodies will be held to account [under the reforms] and in this climate of frenzied cuts, that’s more important than ever. Judicial review is a key challenge to ensure that public bodies meet their duties under the Equalities Act and due regard is paid to vulnerable groups.

Without legal aid funded judicial reviews, the recent work capability assessment and bedroom tax policies wouldn’t have been challenged.

We’ll have a huge percentage of the population without redress, and that is a dangerous system to be in.”

*Previous posts on legal aid can be found here and here

“Ah the whiff of that bread!”: my sister the baker

Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery
Raana (left, centre) and her fellow bakers hard at work in the Lantern Bakery

My talented sister and her colleagues allowed us to document a day in their working lives at the Lantern Bakery based at the Camphill community where she lives. The bakery offers work and training to people with learning disabilities. You can watch and listen to the talented team of bakers in this Guardian audio slideshow we created after our visit.

There’ll be more from the bakers of Camphill on this blog in the next week or so – they really are an inspiring, welcoming and talented bunch of people and work in what has to be one of the buzziest bakeries I’ve ever been to (listen to the audio slideshow – especially my sister’s numerous interjections – and you’ll see what I mean..).

For now, however, the slideshow photographs and the words of the bakers themselves speak volumes and do a better job than I could in a long piece of writing to reflect the bakery’s ethos and prove why schemes like this are so vital. Plus they make the most amazing things so, I’d like leave the last word to my sister, “ahhh the whiff of that bread!”

Ordinary residence, extraordinary mess

Disabled people in residential care who want to live more independently are being prevented from doing so by funding wrangles between local authorities” – that’s taken from a piece I wrote three years ago, but since then little has changed.

The original piece is on the Guardian website:

"Caught in a trap: disabled people can't move out of care",  The Guardian October 2010
“Caught in a trap: disabled people can’t move out of care”, The Guardian October 2010

Here’s the mess: an individual’s “ordinary residence” is usually in his or her original local authority area, so if a council places someone in residential care outside the area, it remains financially responsible.

But when someone decides to move from that residential care in the new area into supported accommodation within the same (ie “new”) area, their original authority argues that it is no longer responsible for funding. However, the new authority – where the person actually lives – argues against funding someone not originally from the area. The result – limbo.

Confusing? Not really, what it boils down to is that councils are passing the buck over people’s care, effectively dictating where people should live -and all the while, individuals themselves appear to have no say. And quibbling over the care bill will only get worse as local authority cuts continue to bite.

I’ve been involved in a piece of work published today by social care organisation Voluntary Organisations Disability Group. The VODG has previously demanded action to resolve such ordinary residence dilemmas and, this time, it argues that the Care Bill offers ample opportunity to finally tackle the challenge. The new briefing, Ordinary residence, extraordinary mess, is available from the VODG website, with this post outlining how the situation has become “business as usual” in many areas.

One way forward, which the bill could accommodate, is strengthening the duty on local authorities to cooperate with providers and with each other to prevent delays in funding when people want to move from one care setting to another. The Epilepsy Society, for example, which contributed to today’s publication, estimates that in the last three years it has covered gaps in fees totalling £350,000 and “staff time involved in chasing fees over the same period has amounted to approximate 340 days across all departments including senior and service managers, finance and administrative staff”.

Here’s just one story from today’s publication, from a social care provider in central England:
“Joe moved out of residential care into supported living accommodation nearby, run by the same charity provider. Council A, where Joe is now ordinarily resident, is refusing to take over funding from Council B which had previously paid his out of county residential care fees. Some 14 months later, the social care provider (a medium sized charity) is owed nearly £50,000 from Council A for this one client. Members of the charity’s finance team chase Council A each week and include copies of previous correspondence and agreements. Council A continues to delay payments, giving the provider different reasons for not paying and passes the query around different council departments. The charity has continued to provide care and covered this gap in fees.”

While the powers-that-be seem unwilling to either acknowledge the scale of the problem or indeed have the confidence to untangle the mess, vulnerable people across the country remain in limbo, unable to move to the place of their choice because of bureaucratic wrangles.

As Anna McNaughton’s mother told me three years ago: “All Anna wants is to live in a suitable home – it’s a basic human need, not a luxury.” It’s a desperate situation that three years on, her words still have the same resonance.

Tailor-made technology: systems and support in social care

Julie Heightley was so worried about her son Thomas suffering an epileptic fit at night that for two years she slept on a camp bed outside his room. The broken sleep and constant supervision of Thomas, who has autism and global developmental delay, was adversely affecting both Julie’s role as a carer and any prospect of independence for her son.

I came across Julie and Thomas’ story while researching a new report published today by the Voluntary Organisations Disability Group and the National Care Forum.

Now, thanks to a discrete network of wireless sensors dotted around the four-bedroom family home just outside Wolverhampton, Julie and Thomas, now five, are enjoying what Julie calls “a new lease of life”. Since the home was kitted out with the assistive technology two years ago, Thomas has been able to safely play and walk about the house independently without needing his mother’s 24-hours-a-day supervision. As well as having a slightly more hands-off approach to her five-year-old, Julie, a lone parent, has more time to spend her two older children who are in their teens.

Julie and Thomas with his older siblings
Julie and Thomas with his older siblings

Assistive – or personalised – technology includes a wide-range of supportive but unobtrusive services and equipment, from personal alarms for elderly people, to seizure monitors and more sophisticated fingerprint recognition systems that allow you to open the door without keys. It can also include computer software, hand held devices or video call systems that increase social interaction and family contact.

As fans of such services and systems point out, the traditional view of this technology is that it involves a medical and prescriptive approach (see the comments on the related VODG blogpost), but the key issue is to bring it to the consumer market, widen its use among the general public and raise awareness about its potential.

As the publication stresses, the social care sector has embraced a huge amount of innovation in assistive technology, using new methods to complement the physical work of support staff. it is transforming lives for the better. But the use of such services, systems and equipment does not enjoy the higher profile of our counterparts in the health sector, despite the fact it is entirely in line with the “person-centred” approach that care providers are working towards and encourages choice, control and independence – social care watchwords.

Today’s report, with its real life stories of how technology is transforming the lives of vulnerable people, aims to change that: “Put simply, technology is part of our modern landscape. We use it for work, leisure, at home and on the move. It makes our lives easier. People with life-long disabilities or age related conditions should share that experience, benefitting from the advantages that tailor-made technological support can bring.”

* Read more on the VODG website and download the report Using assistive technology to support personalisation in social care

“It’s important that while I’m having fun, Stanley is having a great time too”

Stanley Holes is, says his little brother Albie in the brief video diary above, simply “the best brother I could ever have.” Albie’s love for his 16-year-old brother is reflected in this short film which I just watched and wanted to share. Produced for Autism Wessex, the charity that supports Stanley, it stands out for me because it’s presented from a sibling’s perspective: “I love him very much,” says 11-year-old Albie of his teenage brother, “and he is very important to me and my family.”

Diagnosed with autism at three, with no speech and, as Albie says, “little understanding of the world that surrounds him”, Stanley hadn’t been to an autism-specifc setting until last year when he started Autism Wessex’s Portfield School in Dorset. Underlining the vital need for autism-specific support, only now is Stanley receiving proper speech and language therapy – and he’s thriving on the specialist care and education. In one of the previous schools he was at, his family was told that as Stanley was autistic, there was no point in him getting speech therapy since his condition made communication impossible.

Stanley was regarded as a child whose behaviour challenges, his complex needs mean he is prone to anger and violent outbursts (“episodes”, as Albie explains in the film). Yet his story shows that even in complex cases, positive outcomes are possible.

Stanley has started to shows more awareness of his surroundings, and is becoming more independent, using signing with more confidence. Younger brother Albie, meanwhile, is more assured about talking to people about his older brother and how autism affects him and his family’s life.

Stanley’s family realised after a few short months that he seemed much happier at his new school compared to previous special needs environments; as Albie says in the film, “It’s important for me to know that while I’m having fun, Stanley is having a great time too.”

Stanley is a weekly boarder at Portfield, coming home for the weekend, where Albie his parents, plus fellow siblings Mabel, 15, and Elsie, 7, are keen to spend time with him. Before starting at the school, as their father Paul says, Stanley’s behaviour was having an adverse impact on his siblings. Now, says Paul, the change in the family dynamic and in Stanley is “the difference between living and existing”.

Art thinks outside the box

Head of David Rushbrook, James Lake's sculpture of the baritone
Head of David Rushbrook, James Lake’s sculpture of the baritone

One glance at James Lake’s giant 3D portrait of baritone David Rushbrook, and you may never look at a cardboard box the same way again.

Lake’s showstopping sculpture, created through the painstaking layering of cardboard, is intended to move, sing and perform alongside the other performers on stage (the head has already featured alongside the opera singer in Glyndebourne).

As the artist explains on his website, he chose the “inexpensive, commonplace and recyclable” medium because he “wanted to sculpt beyond the traditional materials and without the need of an arts studio”. Lake’s right leg was amputated after bone cancer at the age of 17 and his work focuses on humanity, strength, and vulnerability. His aim is to create work that breaks down the barriers in the art world.

The giant piece of Rushbrook, who has a learning disability, is just one big reason to visit Shape Arts‘ pop up multimedia gallery in London, Shape in the City, which is now open until May. The disability-led arts charity works to improve access to culture for disabled people and Lake is one of 30 disabled or deaf artists featured over five floors and 60,000 feet of exhibition space.

Lake’s 3D work head is shown alongside prints, paintings, film and video, poetry, performance art and installations. The showcase features established as well as up and coming artists plus pieces from the London 2012 Cultural Olympiad programme: ‘Unlimited’.

Here’s a bit more information about three other pieces on display:

Sitting Without Purpose’, James Lake's depiction of his father
Sitting Without Purpose’, James Lake’s depiction of his father

Lake’s life-size Sitting without Purpose depicts his father during redundancy, aiming to reflect a man contemplating the challenges of life.

Noemi Lakmaier paints 500 pairs of shoes in  paint used used to mark accessible parking bays
Noemi Lakmaier paints 500 pairs of shoes in paint used used to mark accessible parking bays

Visitors to the exhibition can watch Noemi Lakmaier live or via webcam painting 500 pairs of shoes in the kind of paint used to mark accessible parking bays in homage to her 2008 piece Experiment in Happiness. Lakmaier’s work explores ideas of the “other”, such as how the individual relates to surroundings and identity. By the time the pop up gallery closes, it will be filled with hundreds of painted shoes.

Chrisopher Sacre's 'See What This Man Gave Birth to After Using 2000 Condoms in 22 Days'
Chrisopher Sacre’s ‘See What This Man Gave Birth to After Using 2000 Condoms in 22 Days’

Chrisopher Sacre‘s artistic epiphany, as he himself has said,”may have arrived in an unexpected form” – but his work has been transformed since discovering “a happy marriage between condoms and plaster”.

* Shape in the City, in partnership with Photovoice and Action Space, 40 Gracechurch Street, London, EC3V 0BT, 10:00am to 2:00pm. For more information email popupgallery@shapearts.org.uk

Puck, peppermint tea and posh frocks: my fabulous sister

With my fabulous sister, Raana
With my fabulous sister, Raana

Learning disability charity Mencap has a marvellous blog, which features, amongst other things, some very personal contributions. The site recently featured a lovely and touching piece from journalist and Mission to Lars filmmaker Kate Spicer on her brother Tom (he has Fragile X syndrome, like my sister Raana) and I contributed some thoughts too, so here’s Raana, in rhyme:

The Fabulous Raana Salman
What does “puck off” mean, you asked,
When a playground jibe you misheard,
It’s an insult, we said, with a bittersweet laugh,
And “puck” is quite a rude word.

You’re older now, and more in the know,
And you’re still just brilliantly funny,
We love how you call my other half “bro”,
And our mother is always called “mummies!”

You constantly amaze us with all that you do,
You garden, you cook and you bake,
You’re a music fan who likes her tunes loud,
Full volume – bloody early – at dawn break.

You love Chinese food and movie nights in,
And sometimes the pub if it’s near,
Remember your fury when we ordered you juice,
And you indignantly cried: “I want beer!”

“You’re fried!” you shout, knowingly wrong,
After watching The Apprentice on telly,
You say it when angry or to make us smile,
And it shows you’ve fire in your belly.

You’re creative and busy and do stuff we can’t,
You’ve woven and painted and grown,
I love having you stay so you’re able to see
How your art brightens up my home.

You’re thoughtful with gifts, matching present to person,
(You know I like peppermint tea)
We joke how “mummies” foots the bill sometimes,
And you say of your gifts: “They’re for free!”

You love baggy sweatshirts, they comfort and cloak,
You categorically refuse a posh frock,
You know your own mind, you’re fabulous and kind,
And basically Raans, you rock.

* The film Mission to Lars will be released on 8 April, with proceeds going to Mencap to help support people with a learning disability and their families. The film follows Tom Spicer who has Fragile X syndrome, a form of autism. He has a dream to meet his hero – Lars Ulrich – and his sister Kate tries to make that happen.

A different perspective on learning disability

Unknown-5

A stereotype-shattering art project, which uses photography to counter negative mainstream attitudes towards people with Down’s syndrome, is showcasing the last eight years of its work.

Unknown-2

Unknown-6

Shifting Perspectives Photographic Exhibition 2005 – 2013 is at the South Bank in London until Sunday (31 March) and aims to portray people with the learning disability as individuals, rather than people with a specific syndrome. Carol Boys, chief executive of the Down’s Syndrome Association, believe that the project has shown how people with Down’s syndrome have “the same hopes and dreams as everyone else”.

Unknown-1

Down’s syndrome is a genetic condition caused by the presence of an extra chromosome and affects one in every 1,000 babies; there are around 60,000 people with the condition in the UK.

The small group of photographers whose work forms the exhibition all have experience of having had children with Down’s syndrome; the collective came together 10 years ago to create a series of works for Down’s Syndrome Awareness Week (this year’s awareness week ended yesterday).

George_DSC0969_fianlPS

Among the photographers involved in the ongoing project is Kayte Brimacombe, who documents social issues and whose previous images for the awareness week can be viewed here.

The art and awareness project has toured the UK and Ireland since then, visiting seven different countries. This week’s show reflects the body of work created so far and coincides with a special book marking the work created so far.

A wider range of images can be seen on the project website and admission to the show is free. It’s open from 11am – 6pm until Sunday 31 at the gallery@oxo and Bargehouse.

Unknown

ccok

Unknown-3

“People who have a learning disability have the right to good services, choices and a good life”

If only more people had the chance to develop in confidence like Laura Minett.

Laura, who I interviewed for a Guardian social care piece today, works as an expert by experience. Her part-time role through the charity which supports her, Choice Support, means monitoring and inspecting social care services on behalf of social care watchdog the Care Quality Commission. The self-assurance she has developed thanks to the job means that when I misspelt her surname during our interview, she politely – but firmly – asked for my pen so that she could write it out for me herself.

Laura, who has a learning disability, told me she is driven by helping improve support for people who may be less independent than her. As she says in today’s piece in the Guardian: “I like getting out and about meeting people and thinking ‘maybe that’s good maybe that’s bad’. I like having a job and talking to the service users – it’s about their quality of life.”

The views of people who use social and health care services are so often not taken into account, something which a major inquiry into health treatment of people with learning disabilities found this week. Involving people who use services in improving the health and social care sector is vital, but so often consultation is nothing more than lip service.

Not so with the experts programme it seems. Another expert I met, Laura Broughton, stressed that paid work and the recognition that her opinion is valuable has made a huge difference to her life. Both the experts explained they have spotted things that could be improved in residential care (simple things, even, like offering people a better choice of food and drink) and told me that individuals in care tell them their concerns or wishes much more freely than they would a professional or full-time inspector without their personal experience.

Laura Broughton volunteering at London 2012
Laura Broughton volunteering at London 2012

She has been an expert for just two years, but already speaks in public and to social care professionals about her role. She walked into our meeting relaxed and confident. “I was quite different before doing this,” Laura told me. “I’d never had job before, certainly not in offices, I was more shy. Now I’ve done the experts work, Choice Support is getting me involved in slightly different things as well. I’m training [Choice Support staff and CQC inspectors] and have done presentations and workshops. It’s exciting…I’m travelling quite a lot and getting to know the country.”

Here is some more from the two experts in their own words, which both women previously shared on the CQC and Choice Support websites.

Laura Minett
Laura Minett
Laura Minett: “If someone said, “What is an expert by experience?” I would answer that I am a person who has a disability and who has first hand experience of using services provided by both health providers and social care providers. I use my experience to talk to others to find out what they think about the care they are getting and if it is good enough for each individual using the service.
I work with different inspectors and have already visited lots of different services like hospitals, a residential college, care homes, assessment and treatment units and secure units. I have recently been part of inspection teams involved in the National Review of Learning Disability services.
My main job is to find out about people’s experiences of the care they receive. The inspector tells me which of the 16 outcomes I need to prepare questions on to ask on the inspection. We arrange a meeting time for the day and go to the service unannounced. This means the provider doesn’t know we are coming. I use my experience to find out what they think about the care they are getting and if it is good enough for each individual using the service.”

Laura Broughton
Laura Broughton
Laura Broughton: “Being part of this review was a good experience for me. It gave me the experience of what it is really like for other people who have a learning disability. What happened at Winterbourne View was terrible and should have never happened.
Working as part of a team with inspectors was exciting. The work was exciting but difficult too. Sometimes some of the places I visited were not pleasing , they were challenging.
Some of the people I met should have more help in getting a better life. They were often bored and distressed and staff talked to them not as adults but as though they were children. Some of the people weren’t treated as individuals and certainly not in a person centred way. I felt some people didn’t get the opportunities they should have because they couldn’t speak or because others felt their behaviour was challenging.
It was good for me because I’m now a lot more confident, I’ve got a paid job as an Expert by Experience. Having a paid job is new for me as it is with a lot of people who have a learning difficulty.
I have a voice and I was able to help other people living in these services to have a voice.
I hope things will change. All people who have a learning disability have the right to good safe services, choices and a good life.”