Institutions – in all but name

I love the photo, above, of Jamie Newcombe, taken by Martin Godwin for an article in the Guardian today.

Jamie, who has a learning disability, was once in a series of restrictive inpatient care units, including a stint in so-called “locked rehab” where he ended up with a broken arm (you can read more on his experience here).

Today. Jamie is proof that people can thrive if supported in the right way.

The government’s long-stated ambition is to move the majority of learning disabled and autistic people from inpatient institutions like assessment and treatment units (ATUs) into community-based housing. This has been the goal of its transforming care programme, due to end in March (and actually care in the community has been the goal of successive governments for decades..).

Transforming care was launched after the 2011 Winterbourne View abuse scandal exposed the reality of ATUs. The aim was to move all inpatients into community-based housing within three years. That target was missed and progress on moving people from ATUs has been slow.

Transforming care is ending soon but there are still 2,350 people in ATUs and there appears to be no replacement for the national programme. Instead, last week’s NHS long-term plan included a new target (by 2023-24) to reduce the numbers in ATUs by half compared to 2015 levels (when there were around 3,000 people in such units).

Campaigners have drawn attention to the fact that this new target essentially extends the original one.

Inpatient conditions for learning disabled people are also in the spotlight with a forthcoming government-commissioned review into restrictive approaches to learning disability care. In addition, similar issues are the focus of the parliamentary Joint Committee on Human Rights, which has recently been examining conditions in learning disability units.

As ATUs rightly fall out of favour, campaigners fear more people will be discharged from them into care that could be equally restrictive, like the sort of locked rehab unit that Jamie was in.

Jayne Knight has visited several locked rehab settings. Knight is an independent family advocate and founder of You Know, which helps people find community housing and care. She describes these “institutions in the community”: “There can be systems of going through one locked door after another. In some places, you are asked what is in your bag and it’s checked, people can still be restrained physically on the floor in their own homes.”

Knight recalls one six-bed facility for autistic people behind a padlocked gate at the end of a residential road, with two staff supervising each resident. She adds: “The number of people was overwhelming. There were narrow hallways and small rooms…It was noisy and the atmosphere didn’t feel calm. People shared bathrooms and so a very strict rota and timetable was in place to enable this.”

The rush to move people from ATUs is likely to have negative consequences, says Steph Thompson, managing director of Waymarks, a voluntary sector organisation supporting people from hospitals into communities. Thompson says: “Pressure to meet discharge targets is highly likely to have two unintended consequences. One, is putting people at risk through unplanned discharges into the community. The other, is step down or across into another ‘bed’. Both routes achieve the discharge target but neither is good for the person.” She adds: “If you have a performance target to meet as a commissioner and an agreed discharge date, it can feel safer to move someone into a ready built unit with a vacancy, health professionals and potentially a lock on the door. It fixes the figures. But it’s not transforming care.” 

Another risk, says Lib Dem MP and former health minister Norman Lamb, is the revolving door of discharge and readmission: “There is a massive risk at the moment driven by the nervous pursuit of a target and a recognition that they have left it too late and if you rush to hit the target with time running out then the risk is you cut corners, you can discharge people unsafely potentially with the risk of them being readmitted or you discharge them to inappropriate or unacceptable settings that don’t actually enhance their quality of life.”

Meanwhile, National figures on planned discharges reveal a marked rise in people moving from ATUs to “other” settings; from 160 transfers in March 2016 to 465 in October 2018 – that’s 20% of all 2,350 people. NHS Digital, which collates the statistics, does not collect information on what “other” settings constitute or on locked rehab or discharges into private placement.

Chris Hatton, Lancaster University professor of public health and disability, says: “It’s hard to know where people are going, what these ‘other’ places actually are, and whether people being moved notice any difference from ATUs…without transparency, it’s possible to game the statistics to make the ‘transforming care’ numbers look good while consigning people to invisibility in places that feel very similar to inpatient units.”

The ultimate answer, says Gary Bourlet, co-founder of campaigning organisation Learning Disability England, is that people need decent jobs alongside good quality community housing “but there’s no national mandate for driving this forward.”

  • Read the full story in today’s Guardian

Putting the long into long term

Nice way to start off the first full week of the new year – the NHS published its long term plan today.

Depending on what you read or watch, it’s either unworkable or it could save half a million lives.

As for what it offers people with learning disabilities and/or autism – areas which the NHS proudly announced a while ago would be clinical priorities – it’s all a bit meh.

Today’s big reveal puts the long into long term.

The plan repeats longstanding aims to get autistic and learning disabled people out of long term hospital care and into proper communities – it promises a new target of 50% reduction in inpatient care by 2023/24. That’ll be 13 years since the Winterbourne View scandal where inpatients with learning disabilities were abused by care staff.

In the meantime, 2,350 people are currently languishing in hospital-style assessment and treatment units like Winterbourne View. This is just another long-term target to add to those that have already been and gone..

There’s another long term target too – for every million adults, only up to 30 people with a learning disability or autism will be in inpatient units (the equivalent number for children and young people is 12-15).

But why these numbers? Is 30 per million what equality looks like?

Then there’s a very clunky bit that’s made my head hurt:

“Since 2015, the number of people in inpatient care has reduced by almost a fifth and around 635 people who had been in hospital for over five years were supported to move to the community. However the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked.”

This seems to be blaming the slow progress on moving people out of hospitals on the fact the NHS has realised that there are more people living in these places in the first place.

People and families really deserve more.

This, languishing at the foot of the NHS Long Term Plan website, says it all:

“We are working with people with lived experience of learning disabilities, autism or both to produce a version of the NHS Long Term Plan in easy read. This will be available soon.”

So people with learning disabilities or autism are a clinical priority but you can’t actually be arsed to produce an accessible, easy read or audio version of the plan that is meant to prove this.

Classy.

Happy Christmas 2018

My youngest sister Raana (left) – cheers and merry Christmas and a happy new year!

Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.

Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.

There’s been a welcome focus in the media recently on learning disability, thanks largely to the determination of campaigning families, but there’s a huge amount left to do. People are still subjected to inequalities in health, housing, employment and attitudes, 2,350 autistic and learning disabled people are still stuck in “assessment and treatment centres” – despite the government’s long-standing promise to move them into proper housing in communities.

Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.

News on my book, Made Possible

With my sister Raana (left), who has fragile X syndrome and who has influenced my book Made Possible.

Just over a year ago I launched the crowdfunding campaign for Made Possible – and now I’m delighted to say that I’ve just delivered the manuscript to the publisher, Unbound.

And I know I’ve mentioned this before, but I can’t stress it enough – I’m hugely grateful to everyone who has backed Made Possible, or who has shared news about its progress to ensure it gets made.

It still amazes me to think that this project – a collection of essays on success by people with learning disabilities – was fully funded within just six weeks. The speed with which the book hit its funding target proves how much this stereotype-shattering title is needed.

There are 1.5m people with learning disabilities in the UK today but people with learning disabilities aren’t asked to talk about their talent, or share the secret of their success – that’s why I wanted to create this book.

Society barely gives them lip service; they are pitied or patronsised, and rarely heard from in their own words.

Now that the manuscript’s done, I’ll be working with Unbound’s editorial team over the coming months and I’m looking forward to seeing the title take shape. People with learning disabilities face huge inequalities in everything from healthcare to education and employment (not to mention barbaric treatment, locked away in ‘care’ institutions, as reflected in recent media coverage). This book of powerful and entertaining essays by learning disabled high achievers will show an alternative approach to treating and supporting people, and the benefits of that approach.

You can find out more about the book in this Guardian piece.

Bomb in my brain: new blog on living with a brain tumour

What’s it like living with a brain tumour?

My friend Jude Bissett can tell you – she first got the news in 2003 and has just launched a new blog about life with a brain tumour, Bomb in my brain. The site is pretty new, but it’s easy to see how Jude’s powerful and honest testimony of a life changing experience will be an important resource for others undergoing the same thing. And even if the issue isn’t something you’ve experience of, it’s an engaging and insightful read.

Jude explains: “I evaded writing about what happened for 15 years. Why? I don’t really know. It was in my head for all that time, usually safely in the background, largely ignored but with occasional flashbacks and incidents that forced it forward. And this time it’s back in a way I can’t ignore and the time feels right to document it, in part therapy, in part to have an accurate record and in part to help anyone else who may face a similar situation and be seeking clues as to what they might expect. Though it will only be clues, we are all different, we all experience life differently.”

Here’s a recent extract from September:

By the end of my “break” I am feeling basically back to normal. The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever. Then before I know it, Posy has her birthday and I am due back at hospital for round two. No tears for me this time, not now I know the drill. I fair skip into the Colney Centre, ready for my spot in a comfy chair and a nice cup of tea from a McMillan volunteer. During the week I had a blood test done at my local surgery. As ever they found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies! They need to check the white count but they have a machine on site to do this.

My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns. She is very sorry but they can’t proceed with my treatment. This news comes as an absolute shock to me, this is not something I thought would happen. It seems my white count is too low. It has to be over 1 and mine is languishing at 0.24. But I feel fine! What has gone wrong? What have I been doing wrong? I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough? “it’s just the treatment” the nurse keeps repeating. I don’t understand and I feel unaccountably upset. The nurse tells me they’ll defer me a week and my count will come back up. I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing. But I calculate the next week will still be ok and I defer for the week and return home.

You can read more of this extract at Bomb in my brain by Jude Bissett and please share widely.

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

Changing perceptions of learning disability: an update on my book, Made Possible

With my sister Raana (left), who has influenced my book Made Possible.

So I’ve spent the last few months working with some incredible essayists for my crowdfunded book Made Possible. The book is a collection of essays on success by (note: ‘by” and not “about”) high achieving people with learning disabilities. Some pieces are still being written while others are almost complete. I’m delighted – but not surprised – to say that the ideas and stories across the essay collection are quite astounding.

The pieces of writing cover very different successes in a range of contrasting areas like the arts, campaigning and sports. But what unites these varied essays is the fact that the writers’ voices are so honest, powerful and at times just plain funny (intentionally so). This is how Made Possible will give a two-fingered salute to the outdated perceptions that exist about learning disability. The book will not only document the hugely impressive achievements of talented people with learning disabilities, but will do so in an engaging, authentic way.

On the issue of talent, my sister Raana’s always been a creative type, from her childhood fancy dress days to her current love for woodwork and baking. When she was younger though, art was her thing, and I’m delighted that a creation she made a few years ago featured in the recent national disability conference at Lancaster University.

‘Mosaic’, by Raana Salman

The ninth biennial Lancaster Disability Conference run by the Centre for Disability Research (CeDR) incorporates Raana’s intricate Mosaic in its event information and publicity. If you follow #cedr18 and @CeDRLancs on Twitter you might get a glimpse of my sister’s handiwork which usually hangs in my hallway (so as many people as possible get to see it). Raana’s family and friends are so proud to see Mosaic shared more widely – a big thank you to Lancaster University and its Made Possible supporters for the opportunity to show more people what our sister – daughter – aunt – cousin – niece – friend – housemate – colleague- neighbour (because Raana is many things) can do.

The fact that learning disabled people’s talents are overlooked is an issue that cropped up in a recent interview I did for the Guardian. In conversation with Sam Clark, the new chief executive of campaigning organisation Learning Disability England, Sam’s words reflect what lies at the heart of my book: “We all bring gifts and talents, and I think it would be brilliant if we could understand that’s the case for everyone.”

I think it would be brilliant too. When I launched the crowdfunding campaign for Made Possible, I explained that shattering the tired stereotypes of “superhero” and “scrounger” is what drives this book. It also influences my articles on disability issues, some of which were recently shortlisted for a British Journalism Award for Specialist Media. Specialist writers cover issues that can be otherwise overlooked in mainstream media – my focus is the 1.5m people in the UK with a learning disability, the inequality they face and their untapped potential.

Thanks, as ever, to everyone who’s helping to get Made Possible published; by backing this book you’re helping create something that challenges the current narratives.

If you’ve not done so already, do link up with me on Twitter, LinkedIn, Facebook or Instagram or using the hashtag #MadePossible

The Social Issue – on a summer break

As the Twitter screenshot above says, I’m on a break from blogging and tweeting so I can progress the book, Made Possible, a collection of essays on success by high achieving people with learning disabilities (yes, you read that right – this book’s all about shattering stereotypes!).

You can find out more about this crowdfunded collection of essays here which is being published thanks to some incredible support from its patrons (a list of supporters so far is available on this page if you scroll down to ‘supporters’).

How a national scandal goes unnoticed

Tomorrow is the seventh anniversary of an event that reflects an enduring national scandal. A long-running scandal that doesn’t trigger public or political outrage.

I’ve written an opinion piece for the Guardian about this today.

On May 31 2011 BBC’s Panorama exposed the abuse of people with learning disabilities at the NHS-funded Winterbourne View assessment and treatment unit (ATU) in Gloucestershire.

There are around 1.5m learning disabled people in the UK, including my sister, Raana. But the general disinterest in learning disability means that tomorrow’s anniversary will not trouble the national consciousness.

Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.

Since then, various reports and programmes have aimed to prevent another Winterbourne View. These include NHS England’s “transforming care” agenda, which developed new care reviews aimed at reducing ATU admissions.

Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.

This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.

The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.

Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).

To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.

If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.

Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article 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.

Saba Salman on social affairs