Five things I’ve learnt about accessible events

Disabled Access Day takes place tomorrow. It’s a day about getting out there and trying something new! The Science Museum in London was recently named as one of the most accessible tourist attractions in Britain so we asked one of their Special Event Developers, Claire Hazell, to share their advice on how they do it.

Being a Special Events Developer means that my team and I write, develop and present a large programme of events aimed at families during holidays and weekends. We also run a variety of events aimed at making the Science Museum accessible to everyone. During my time I have learnt a lot about museums and their role in accessibility, here are my top five things:

1) There is a big difference between accessible and inclusive

Presenter signs
Presenter signs “Galaxy”. Everyone who attends the show learns a few science related signs.

Our deaf-led SIGNtific programme is a great example of an accessible and inclusive event. The science shows, storytelling sessions and workshops are all presented in British Sign Language and are suitable for both deaf and hearing visitors. They are on during the day and advertised to everyone that comes into the museum. It’s a great way to increase deaf awareness in hearing children and to include deaf children and adults in museum activities.

Our Early Birds early morning Autism event is different. The museum opens early five times a year for families with children on the autistic spectrum. The museum is quieter and there are tailored events and activities for the families. This event is accessible but does not include everyone. This is because it can’t include everyone; the reason we open it up to families early and make the spaces limited is so that the museum is quieter and has less going on. Families asked us to run the event this way and our research has shown us that this is the right environment for their needs.

2) Accessible means different things to different people

Gallery at the Science Museum
(photo credit)

Every visitor that comes to the museum wants to get something different out of their visit. From finding their favourite object, or enjoying a new gallery to just finding a toilet!

Making the museum accessible can mean different things for everyone. It could just mean giving someone a map so they can find their way around but it could also mean coming to an event which has provision for their needs. We try to make the museum accessible for as many people as possible and we are always willing to take suggestions and listen to what our visitors want from us.

3) Don’t make assumptions

Interactive gallery
Launch pad (photo credit Heather Cowper)

While planning for a recent Early Birds session we did some research and found out that sensitivity to loud noises was common among children on the Autistic spectrum. We decided that we should turn off all loud noises and try and keep the museum as quiet as possible. We had planned to turn on one of our large engines and as such included this in our visual story. Families were able to avoid the engine as it was only turned on late in the session. What we found was that lots of families loved seeing and listening to the engine and talking to our engineers about the engine. We assumed that this wouldn’t be the case because of some research we had carried out.

We soon realised that we should never assume and we use this attitude in all our new developments and make sure we look at developments from every angle and assume nothing!

4) You can’t do it alone

Where do you start when trying to run an event when you don’t know much about what the event would need?

You start with people that would know. When we developed our new audio described event we spoke to local councils, charities, specialist organisations, schools, other museums, and of course families themselves. The information from these groups was invaluable and will help the team provide a new event that opens up the museum and its collection to even more people.

5) Taking the first step is hard but the rewards are worth it

Convo 800x392All our events had to start somewhere. A brainstorm, a query from a visitor or an idea you have just before you go to sleep. But turning that first idea into an event can be daunting and sometimes scary.

All our events have amazing teams that run them and supportive managers to coordinate them. It is always an amazing accomplishment to open the door for an event for the first time. I loved seeing the smiles on the faces of the families when they came into the museum for our first Early Birds session, and I still find it amazing to see children communicating with our deaf presenters in sign language. I’ll end with a quote from one of them:

“SIGNtific is fantastic at encouraging children to learn about science without realising they are learning, a brilliant opportunity for deaf and hearing children and their parents to talk and share their experiences after the events. It is always a thrill to be a role model to all children at the events!”

Find out more about accessibility at the Science Museum.

Get involved with Disabled Access Day.

 “No amount of safeguarding will ever be enough”

JulietIn this guest blog post, Juliet Marlow, a disability rights campaigner and member of Not Dead Yet UK, explains why she is against legalising assisted suicide. Not Dead Yet UK is today protesting against the Assisted Dying Bill outside the House of Parliament.

Lord Falconer’s Private Member’s Bill proposing the legalisation of doctor-assisted suicide (AS) for those with six months or less to live will receive its third reading in the House of Lords today, Friday 16 January.

This isn’t the first time the matter has been debated. Every few years somebody will make the proposal only for it to be nervously put aside. But this time feels different. Despite its controversial nature it seems the idea has somehow caught public imagination and there is a very real chance that this time it could become law.

My name is Juliet. I’m 44, married, a PhD student and freelance writer. I sing in a rock/pop band and mostly love my life. I have been disabled since I was four; I use a wheelchair and rely on PAs to assist me with pretty much everything. I am also passionately opposed to the legalisation of AS.

On the surface, AS doesn’t look that unreasonable. People know that sick and disabled people have had to fight hard for control of our own lives so naturally they assume we want to control our deaths too.

Not Dead Yet

I am proud to belong to the anti-AS campaign group Not Dead Yet UK. Most of us have personal experience of disability and our reasons for opposing the Bill will vary. But our core arguments are that it is unnecessary and unsafe. No amount of safeguarding will ever be enough to protect all vulnerable people, all the time. And that is a terrifying thought for those of us who face illness and death every day.

Sympathy and fear are the pro-AS lobby’s weapons of choice. Sympathy is hard to fight because some of their campaigners genuinely want to try and prevent future suffering.  Nevertheless, I respectfully suggest they have missed the point – it is society that robs people of a ‘good death’, not illness. With proper pain medication and decent patient-centred palliative care, a ‘good death’ can be had. It’s never easy but it can be effectively managed to prevent unnecessary suffering.

Fear is much harder to counteract. People will die in pain and distress unless the authorities ensure all terminally ill people get the palliative support they need.  It is no coincidence that at a time of savage public funding cuts, the AS question has raised its ugly head again. It is because the misguided belief that society will always take care of its most vulnerable citizens has been tarnished, exposed as a lie.

Life not death

Our solution is not to control when and how we die, but to focus on life rather than death. We choose to campaign, protest and fight until the authorities introduce a cast-iron, needs-led end-of-life service that allows each of us to live to our natural end without pain and imagined ‘loss of dignity’.

The suggestion that dignity is lost through illness and can only be reclaimed by controlling the manner of your death is not only ignorant, but insulting to disabled people who have fought to build a meaningful life. If there is any loss of dignity then it is inflicted; it is not a natural state that can be avoided by dying early. I want support to live, not to die!

The pro-AS campaign claims that the Bill has nothing to do with disability. They are at best being naïve, at worst underhand. It has everything to do with disability. After all, it is only when terminal illness threatens to become disabling that AS is even considered. The high profile cases of the late Debbie Purdy and Tony Nicklinson demonstrate how much disability informs the whole issue. Ironically neither of those people would have qualified for AS under the current wording of the Bill, which gives credibility to our belief that once in place the legislation will be modified to include more people – what we call the ‘slippery slope’ effect. Once a line has been crossed any incremental changes to the qualifying criteria can and will be passed with little resistance.

Becoming a burden

Another concern is that coercion is not always obvious. It is subtle, creeping and sometimes even unintentional. The fear of becoming a burden to our loved ones is real, especially now as an almost imperceptible but tangible shift in attitudes towards disabled people has emerged. This is fuelled by the ‘shirker vs. striver’ rhetoric favoured by all mainstream political parties.  I have witnessed genuine cases where people are made to feel unloved and unwanted by those around them; they are made acutely aware of being a so-called burden on their loved ones. Once AS becomes acceptable it will then become expected, the ‘decent thing to do’ to alleviate stress to others.

Ultimately everyone must make up their own mind whether they can support AS. But for me, if even one  person loses their life through error or coercion then that’s too high a price to pay to allow a handful of people to end it all if and when society lets them down. Dignity in dying, surely dignity in living is more important? After all, if ill and disabled people have the latter, few will ever need the former.

You can also read Scope’s view on the Assisted Dying Bill, and we would welcome your thoughts too. 

Who opposes the Assisted Dying Bill?

Scope is against legalising assisted suicide – read three reasons why.

Along with the Prime Minister, disabled activists, doctors, lawyers, older people’s charities and national newspapers, we are opposed to what would be a major change in the law.

Here are some of the reasons why they are opposed to the Assisted Dying Bill: 

Action on Elder Abuse, Mencap, Scope and Veterans Association (Joint Letter to Peers, July 2014)

“An assisted suicide law would for the first time in this country introduce the idea that there are some people whose deaths can actively be brought about; whose suicide, unlike other people’s, society would make no significant effort to prevent and indeed would actually assist.”

Baroness Campbell of Surbiton

“The existing law on assisted suicide rests on a natural frontier. It rests on the principle that we do not involve ourselves in deliberately bringing about the deaths of other people. What the proponents of “assisted dying” want is to replace that clear and bright line with an arbitrary and permeable one. At the moment they say they want assisted suicide for people who are terminally ill, but for how long will that last, and who decides what is terminal? If terminal illness, why not chronic and progressive conditions?

“And, if chronic and progressive conditions, why not seriously disabled people? I am already on the list. Lord Falconer himself conceded three years ago that assisted suicide should not be offered to disabled people “at this point in time”. This sent a shiver down my spine: it is reminiscent of Belgium’s slippery slope.”

Baroness Grey – Thompson

“Why are people worried? It is because many disabled people are not terminally ill. However, many terminally ill people experience some sort of impairment and there is a great deal of confusion around that. There is a myth that our lives are so tragic or painful that we must want to end them. Just this week I was told, “You must have wanted to kill yourself many times in your life”. No, I have not. I have experienced excruciating pain. When I was 19, I snapped a metal rod off my spine that came out through my skin, but I have never considered killing myself. The fact is, however, that many people expected that I would ask for that. What if those people were related to me?”

David Cameron, Prime Minister

“For myself I am not convinced that further steps need to be taken, I worry about legalising euthanasia and people might be being pushed into things that they don’t actually want for themselves…”

The Church of England

“The Church of England cannot support Lord Falconer’s Assisted Dying Bill…. Patient safety, protection of the vulnerable and respect for the integrity of the doctor-patient relationship are central to the Church of England’s concerns about any proposal to change the law.”

A Joint Letter from 23 British faith leaders (July 2014)

“The Assisted Dying Bill would allow individuals to participate actively in ending others’ lives, in effect colluding in the judgment that they are of no further value. This is not the way forward for a compassionate and caring society.”

British Medical Association

“Current BMA policy firmly opposes assisted dying for the following key reasons; Permitting assisted dying for some could put vulnerable people at risk of harm; such a change would be contrary to the ethics of clinical practice, as the principal purpose of medicine is to improve patients’ quality of life, not to foreshorten it; legalising assisted dying could weaken society’s prohibition on killing and undermine the safeguards against non-voluntary euthanasia.

“For most patients, effective and high quality palliative care can effectively alleviate distressing symptoms associated with the dying process and allay patients’ fears. Only a minority of people want to end their lives. The rules for the majority should not be changed to accommodate a small group.”

Royal College of General Practitioners

“The Royal College of General Practitioners (RCGP) is to remain opposed to any change in the law on assisted dying.

“[GPs] were against a change in the law for a range of reasons, including that a change in the legislation would… put the most vulnerable in society at risk; would be impossible to implement without the possibility that patients may be in some way coerced into the decision to die; shift the focus away from investing in palliative care and treatments for terminal illness; instigate a ‘slippery slope’ whereby it would only be a matter of time before assisted dying was extended to those who could not consent due to reasons of incapacity and the severely disabled.”

Royal College of Surgeons

“The law as it currently stands should not be changed and no system should be introduced to allow people to be assisted to die.  The College does not recognise any circumstances under which it should be possible for people to be assisted to die.”

As always, we welcome your thoughts on the issue. 

Are you longing for an accessible summer?

We all know January can be a miserable time of year. So much so that Monday 19 January is supposed to be THE most depressing day of the year! It helps explain why a lot of people start booking their summer holidays around this time. Here we have a couple of brilliant home and away options for accessible holiday destinations, reviewed by disabled people…

Somewhere cheerful on my doorstep please

Perhaps The Beamsley Project in the Yorkshire Dales will be right up your alley!

Emily Yates is an accessibility consultant and accessible travel writer, who also has cerebral palsy and uses a wheelchair. She’s currently spending six months of her year in Rio de Janeiro, advising on transport accessibility for the upcoming 2016 Olympic and Paralympic Games.

Emily spent her 21st birthday weekend at The Beamsley Project, and recently went back to properly assess all of the accessible features that it offers for disabled visitors.Large stone house in the countryside, with people sitting on a picnic table in front of it

Emily says, “in terms of accessibility, there are automatic external doors leading to a small lounge area with a television and sofas on the ground floor.  In the kitchen,  on the ground floor, there are height adjustable sinks and hobs, low storage for equipment that needs to be accessed, and all surfaces have space underneath so that wheelchair users can get right up to the surface itself. Off the side of the kitchen, the dining room boasts plenty of chairs and tables for personal arrangement, height adjustable tables, and wider grip cutlery for those who may require it. There’s a laundry room with two washers and dryers, a fridge freezer, torches and various sizes and shapes of slings to use with the hoists provided.

“There are also six bedrooms, two shower rooms, two toilet rooms and one bathroom on the ground floor, allowing sixteen people to sleep on this floor. Out of the sixteen beds (there are two four-bed rooms and four two-bed rooms on the ground floor), there are two height adjustable beds, and all beds can have cot-sides fitted to them if necessary.  There are two further bedrooms on the first floor (accessible via lift) sleeping four in each. Both have en suites, one of which has a roll-in shower and several grab rails.

“Whether you consider yourself to have a disability or not, book a stay at the Beamsley Project.  I guarantee that with such a stunning location, more equipment than you could need, and a great welcome from a lovely couple, you will not be disappointed.”

I want out of the UK –  give me guaranteed sunshine!

Then head to Barcelona, and experience sun, Catalan culture and tapas.

Martyn Sibley, co-editor of Disability Horizons, has a physical condition called Spinal Muscular Atrophy and uses an electric wheelchair. He visited Barcelona last summer to report on accessibility in the city.

It seems that Barcelona has really built on its Olympic and Paralympic legacy since hosting the games in 1992. Aside from the outstanding accessible accommodation available, there aYoung disabled man being supported into the basket of a hot air balloon re many other offerings which help to make Barcelona one of the most accessible cities in the world. Many experiences which disabled people are often completely excluded from, such as hot air balloon flights, lazy days swimming at the beach, and even visits to wine cellars can all be experienced here.

It’s not just physical impairments that have been taken into consideration either. There are a number of venues and sights that also cater for limited mobility and special needs, for example tactile and audio tours of Gaudi’s famous Temple of the Sagrada Familia, and tourist buses with audio guides and induction loops. Impressively, 80% of Barcelona’s metro system is accessible, and 100% of their buses.

Martyn says, “Barcelona is hands down, the most accessible European city that I’ve ever visited. With so much to see and do and so many facilities on offer to disabled people, I’m sure it won’t be long until I’m back to see some more of what Barcelona and Catalonia has to offer.”

We’d love to know any great accessible holiday destinations that you’ve experienced too. Please leave a comment if you have any recommendations.

Scope’s 100th film launched – our top 5 favourites to date

2014 was the most successful year yet for film content from Scope. Our videos played a big part in some of our most high profile work to date in things like End The Awkward and Strip For Scope. Along the way we also achieved some fantastic things too.

We now have well over 1,000 subscribers to our YouTube channel. We screened some of our films in cinemas around the country for the first time. We produced our first content in British Sign Language and in audio description versions. We also released our 100th film at the end of the year.

To celebrate, we put together a list of our top five favourite films to date.

  1. End the Awkward – In the office

    495,586 views
    This film is one of the three main adverts for our End The Awkward campaign. Star Alex Brooker couldn’t stop laughing at the funny expression on the actor playing the male office worker’s face. The actor was probably less amused as it meant he had to maintain that awkward expression on his face for half a day.

  2. Strip For Scope

    152,675 views
    This film has the dubious honour of being the first Scope film to feature any sort of nudity – but hopefully you’ll agree that it was done tastefully. Jack Eyers, the male model who features in the film, didn’t allow himself to eat or drink across the day of the shoot in order to maintain the look of his physique.

  3. What is the social model of disability?

    25,913 views
    This film might also have featured silly faces and nudity if Mik Scarlet, who features in the film, had had his way, but thankfully we talked him out of it on the day of the shoot. (Just kidding, Mik.) Thankfully instead, we have perhaps one of the most interesting films Scope has produced to date. It features prominent disabled people discussing the social model of disability – and what it means to them.

  4. Cycle Prudential RideLondon-Surrey 100 for Scope

    3,830 views
    Scope are really excited to be the official charity partner for the famous Prudential RideLondon-Surrey 100 bike race. This film doesn’t even go half of the way to illustrating how awful the conditions were on the day in 2014, so a massive thanks again to all our cyclists and cheerers on the day!

  5. About Scope

    5,015 views
    Last and by no means least is our new film all about Scope and our work in England and Wales. We didn’t want to produce a slick, flashy promotional film so this film was shot in a “selfie”-style across a year at locations all over the country by disabled people themselves, along with support from Scope volunteers and staff.

So what was your favourite Scope film from 2014? Let us know in the comments below.

We’ve got some really exciting projects coming up in 2015, so if you want to be the first to see our content before everyone else, please take a minute to subscribe to our YouTube channel.

“Many parents go through the diagnosis stage and are left feeling lost and alone”

Guest post from Donna, who is a Face 2 Face befriender in Coventry.

Donna with her daughterSophie was born naturally at the local hospital and I was so proud to be her mum. She was the most beautiful thing I had ever seen. She had black hair and red ruby lips.

It wasn’t until Sophie was around 3 years old that I started noticing that she wasn’t meeting her key milestones along with her peers. After an awful lot of filling in forms and talking over these issues with many different professionals a consultant diagnosed Sophie with Autistic Spectrum Disorder (ASD).

I remember listening to everything thinking “this is fine, I can deal with this”. It wasn’t until a few days later I started questioning what this meant for us as a family, but more so what it meant for Sophie’s future.

People say “children don’t come with manuals!” – well this is even more true for children with ASD. These children write and rewrite their manuals on a half hourly basis. You’re forever learning, relearning and adapting. And this is what makes living with a child with ASD one of the most pleasurable things, but also one of the most challenging.

I would have loved having someone who was genuine, non-judgemental and empathetic to all the things we were facing. Someone to listen to me as Sophie’s mum.

I have just completed my Face 2 Face training to become a befriender in Coventry.

Coventry needs this service as many parents go through the diagnosis stage only to be left at the end feeling lost, alone and in need of a shoulder.

I realised that this service is something that I wish had been available when we were going through diagnosis. I just hope that I can be a positive in someone’s life.

Donna supports parents as part of our new Face 2 Face service in Coventry, which launched today. Face 2 Face provides free emotional support for parents of disabled children, from other parents with similar experience. 

Another befriender in Coventry, Sophie, has also written a blog for us about her story. Read Sophie’s story

“It can be daunting having a child with additional needs but we love being parents”

Guest post from Louise, whose son Daniel is 10 years old and has focal epilepsy. This means that he has seizures, most of which happen at night. Louise is a Face 2 Face befriender in Coventry, here is their story.

Louise and DanielDaniel started showing signs of epilepsy when he was three years old. I remember reading him a bedtime story and I noticed that his mouth started twitching and he was dribbling. He became unresponsive and my husband and I didn’t know what to do. We had never seen anything like it before.

Luckily, it only lasted a few moments but it scared us. I took him to our GP who referred us to see a paediatrician, who didn’t think there was anything to be worried about.

Soon after Daniel had a major seizure so we rushed him to hospital and six hours later he was still fitting. I was terrified and it was one of the worst nights of my life. The seizures finally stopped and after more tests Daniel was diagnosed with epilepsy.

At first, it was difficult to explain to family and friends. Everyone reacted differently.

I felt we weren’t given enough medical advice and we were left to research Daniel’s condition on our own. As a mum you want to have all the answers and it’s hard when you don’t – it leaves you feeling guilty. All I needed was to speak to someone who wasn’t involved but knew what it was like.

Daniel’s seizures continued and were hard to control. When they start the first thing that happens is he loses the ability to talk. It’s scary because he can’t even tell you one is coming on. So we came up with a solution – we put cow bells around the house which he can ring if he feels something is wrong. Daniel knows that the bells are not toys and only uses them when he needs to.

Daniel also has dyspraxia and over flexible joints. Which helps explain why he has struggled with school over the years. Recently, an educational psychologist suggested that Daniel might be autistic too – which came as a big shock for us.

The school he is at now is supportive and most importantly Daniel is happy there. He has a good consultant and our family is learning to come to terms with all the different conditions he has.

It can be daunting having a child with additional needs but we love being parents.

Daniel is a kind, gentle boy who is well liked. He’s helpful to everyone and never ceases to amaze me. He sees the world in a beautiful and special way.

Louise supports parents as part of our new Face 2 Face service in Coventry, which launches today! Face 2 Face provides free emotional support for parents of disabled children, from other parents with similar experience. 

Another befriender in Coventry, Donna, has also written a blog for us about her story. Read Donna’s story

 

What will you do differently in 2015?

Made any New Year’s Resolutions yet? If joining a gym or learning Spanish isn’t really doing it for you, why not take a look at some of these fun ideas.

 No lycra involved

  • Recycle that sweater. Take all your unwanted Christmas presents into your local Scope shop. We won’t tell Auntie Maureen.
  • Women-drinking-teaMake new friends. Join the online community and chat to others in similar situations. Find support, share your experiences and swap ideas with other other people connected by disability.
  • Discover your inner creativity. Write a blog for us. Tell the world about your secret hobby or a campaign you feel passionate about.
  • Enjoy guilt-free shopping. Sign up to Give as you Live and a percentage of every purchase you make at thousands of online stores will go to Scope.
  • Backgammon-and-Bridge tournamentGive us a tip. Had a eureka moment recently? Don’t keep it to yourself. Add it to our fantastic tips section and enjoy the warm glowy feeling of passing it on.
  • Take up backgammon. You might even want to join us for the 16th annual Backgammon and Bridge Tournament on 22 March.

Step it up a gear

  • Fran-and-molly-bakingBake a difference. Hold a cake stall at your workplace, school or local club and donate the proceeds to Scope. If you email us your name and address we’ll even send you a cookie cutter!
  • Rattle a tin. Collect for Scope in your local community. If you can give up an hour a week or a day a week, we’ll provide you with a collection tin, a Scope T-shirt and a letter of authority.
  • Volunteer for Scope. If you’re unemployed, volunteering can help boost your skills and confidence, and improve your CV at the same time. We’ll give you all the Woman writing a willsupport and training you need.
  • Make a will. Don’t forget to leave a little something for Scope. Find out why gifts in wills are so important.
  • Use your mobile phone to donate. Give £3 a month from your mobile phone bill. You can skip a month or stop your donation at any time.

Become a superhero

  • RideLondon-Single-man620x349Ride London-Surrey. Cycle 100 miles from the new Queen Elizabeth Olympic Park in London, through Surrey’s stunning country roads and hills. This incredible event takes place on 2 August but you can guarantee your place now.
  • Become a mentor for a young disabled person through Scope’s First Impressions/First Experiences service. Email us for more information.
  • Abseil down the Queen Elizabeth Olympic Park Orbit. One of London’s top iconic visitor attractions, take in the awesome views as you descend the Olympic Park Orbit on 7 March.
  • Become a campaigner. Want to make a change? Get involved in community campaigning. We’ll sBen-Nevis trekhow you how.
  • Climb Ben Nevis. Take on one of the highest mountains in Britain … or join a trek up Mount Kilimanjaro. Or how about six days trekking and camping in Machu Picchu, Peru?  Find out more about Scope’s trekking challenges.

Still stuck for inspiration? Visit the Scope website for more ways to get involved