SENDirect: new portal will help families of disabled children find the right support

Mark Atkinson, Director of External Affairs here at Scope explains why SENDirect is so needed by families of disabled children. 

At Scope, we hear from many families who are struggling to find the right services and support for their disabled child in their local area.

Our research shows that a shocking two-fifths of parents have been unable to access youth clubs, play groups and other local activities for their disabled child.

Finding the right afterschool club, person assistant or childcare shouldn’t be a full time job – but parents tell us it is.

This week I attended the launch of SENDirect, which will revolutionise the way that families with disabled children access services and activities in their local area.

SENDirect is a one stop shop which aims to make it easy for families to:

  • See all the services in their local area, including how much they cost and what other families think about them.
  • Speak directly to activity providers about how they can include their child.

After the publication of the Support and Aspirations Green Paper in 2011, Scope has been proactively campaigning for councils to have inclusive and accessible universal services that all families can use.

Since the release of the paper, Scope has been a founding member of the SEND consortium and one of nine leading disability organisations working together to develop new products and services that meet the needs of families for SENDirect.

The timing of SENDirect is spot on. Last year the Government brought in a new requirement for councils to develop a ‘local offer’ of all the services and support for disabled children, and young people from birth to age 25.

When councils develop and review their ‘local offers’ they also have to consider the views of parents and young disabled people.

SENDirect puts families in the driving seat – and will help them shape the local market of services. If parents can’t find what they are looking for, the site automatically records the information and makes it available to commissioners or potential providers so they can develop new services.

So far 2,084 services are listed on the site and it’s growing every day.  I think it’s an exciting concept and we’re completely behind it.  Watch this space.

Our top 5 technology and innovation trends for 2015

New Year may now be a distant memory, but New Year’s resolutions are (just about) going strong and lots of us are still looking to try something new. As January is generally a bit depressing, we thought we’d share some of the exciting technologies and innovations happening in the disability field to give us all something to look forward to for 2015!

We’ve put together a list of five top trends and technologies that are set to gain momentum over the coming year, and which we hope will have a real impact on the lives of disabled people.

  1. 3D Printing

Although these nifty machines have been around for a while now, it’s taken a long time for them to start printing anything of any real use (who needs another 3D printed moustache anyway?). In November we met Mick Ebeling of ‘Not Impossible labs’, who founded ‘Project Daniel’ in 2013, a 3D-printing prosthetic lab and training facility for amputees in war-torn Sudan. Since then 3D printed orthotics are being developed everywhere from prosthetic limbs, to exoskeletons and wheelchair seats, and can reduce the wait for custom made equipment from 28 weeks to just 48 hours and for a fraction of the price. Project Daniel is just one of many inspiring examples of how 3D prosthetics are changing lives for disabled people on a global scale. With 3D printing set to grow 98% in 2015, and with 3D printers now available on the high-street, we hope 2015 will be the year when 3D printed orthotics become more affordable, accessible and widespread than ever.

  1. Wearable Technology

Wearables seem to be everywhere now from the Apple Watch and Google glass to health technologies like Kiqplan and Fitbit. With this newfound focus on health and wellbeing in mainstream wearable technology there is huge potential for wearables to be adapted to support disabled people with living more healthily and independently, such as SmartGlasses which help visually impaired people to see.

Another such technology that is still in development stage, but we are equally excited for is the VEST which stands for Versatile Extra-Sensory Transducer. This non-invasive, low-cost vibratory vest allows those with hearing impairments to use ‘sound-to-touch mapping’ to interpret auditory information through small vibrations on their torso. VEST is an idea developed by Dr. David Eagleman and works on ‘sensory substitution’, the idea that the brain can gather data using one sense, and then transfer it to another sense. With projects like this already up and running thanks to crowdfunding it seems the possibilities for Wearable technology are endless!

  1. Shared economy

Another trend that’s become almost impossible to ignore is the growing ‘shared economy’. This has seen everything from Crowdfunding and peer to peer lending, to services such as Task Rabbit, Casserole Club, Airbnb, and even BorrowMyDoggy.com (yes, it really is a thing). We think there is huge potential here for disabled people to get extra support and through the collaborative economy, as well as being able to get involved and share their skills.

Spice Time Credits, a social currency, is one way this is happening already. It works on the principle of individuals volunteering an hour of their time, and in exchange receiving one time credit worth an hour, which can be ‘spent’ on events, training and leisure services. It has already proved hugely successful across England and Wales from communities to Schools and social care settings and has seen a huge increase of customer participation and new models of co-production developed. What’s great about Time Credits is that everyone’s time is of equal value, regardless of knowledge, expertise or skills, and offers real life experience where people are rewarded for their contribution.

  1. Connected home

Although being able to control your heating from your smartphone may seem a tad unnecessary and somewhat self-indulgent (maybe that’s just us?!), it does show exciting development in the world of smart machines and the connected home. At Beaumont, Scope’s residential FE College, we’re already using environmental controls within some of our living areas, to allow students the independence to control things such as their curtains, lights and doors, from their smartphone or tablet.

Samsung has developed its SmartThings home control system, which can be used to monitor and control connected items in the home from locks to light switches and plug sockets. We’re really excited to see the demand for these technologies growing in the mainstream market and we hope that such technology will soon become both affordable and widely available, as it has huge potential to revolutionise the very meaning of independent living for disabled people!

  1. Hacks and ‘making’

The work we have been doing with IKEA has opened up a whole new world of ‘hacks’ and ‘making’ to us. Everyone seems to be having a go at making ‘handmade’ products, and ‘hacking’ mainstream products and furniture to meet the needs of disabled people. The Wheelchair Liberator, developed by Malcom Rhodes, is one such example and a far cry from the traditional homemade jam and knitted jumpers!

With coding now part of the national curriculum for all school children, apps are another thing that (almost) every man and his dog are having a go at making, and there really does seem to be an app for everything! The Apps for Good programme has seen a huge number of apps developed by young people aged 10-18 to address some of the biggest problems facing young people in our society. One such app is Supportive Schedule, an app designed to help people with learning difficulties and mental health conditions and their carers with daily routines. It provides pictorial guides to completing simple tasks such as making a cup of tea, to help aid their independence. It was developed by six young people at a school in Cumbria and won the Apps for Good award “Our World – encouraging sustainable and healthy lifestyles” in 2013.

From care sharing app Jointly, to diabetes management apps like Diabetes UK’s Tracker App, there are a wealth of apps out there designed to make life easier for disabled people.

We love this trend of people finding innovative solutions to their own problems. That’s why we’re working on creating a database of what we like to call ‘disability innovations’, to showcase the best technologies and creations out their making life easier for disabled people.

If you know of any such apps, technologies or innovations that are making a real difference to the lives of disabled people, then we’d love to hear from you!

We’d especially want to know if you have hacked or invented something yourself, so we can include them in our database and help you share them with others.

Get in touch with us at innovation@scope.org.uk or of course leave any comments below. 

Fluctuating and flexible support – why we need adjustment leave

Scope wants to close the disability employment gap. Disabled people can work and want to work – more than nine in 10 do work or have done in the past. However, only 45% of disabled people are currently in work.

In our  2014 report A Million Futures: halving the disability employment gap, Scope recommended the introduction of a new form of leave – “adjustment leave” as one way  to help disabled people stay in work. So we are delighted that The Work Foundation are now also asking for this in their new report Fluctuating Conditions, Fluctuating Support: Improving organisational resilience to fluctuating conditions in the workforce.

Adjustment leave reflects the fact that many people who are disabled or who have long-term health conditions experience changes in their impairment or condition over time.

It’s a new form of absence which would allow  the person to take part-time leave on a temporary basis at the same level of pay as would be accrued during pre-existing sick leave. Unlike sick leave, the individual is still working, but on a modified basis. Unlike part-time working, this change is intended to be temporary only – it is intended to help an individual “adjust” to a change in their condition.

Let’s take Mary. Mary has a condition which affects her joints and mobility and has recently become a wheelchair user. Everyday tasks – such as using public transport, or doing her shopping – are now taking Mary much longer than they used to. She is also experiencing much more pain and fatigue. Additionally, Mary wants to try a new therapy.  At the moment, she can’t manage work on a full-time basis, but she doesn’t want to lose her income or her independence. Her employers are keen to keep her skills, experience and expertise.

This is where adjustment leave would come in. Mary continues working, but she does shorter hours every day for a few months. This helps her to adjust faster to the changes in her life, and prevents her needing to take a full-time sickness absence. She is also continuing to be productive for her company at the same time. Once Mary has adjusted, she goes back to her old way of working.

Many employers are already doing this on an ad-hoc basis. Making this an official form of absence –  recognised by government, by HR professionals and most importantly, by employers –  would prevent unnecessary sickness absence and help disabled people stay in work.

Retaining disabled people’s talent makes good business sense. It’s time we step up to the plate.

If you have any thoughts on the report you’d like share, or a personal experience of adjustment leave, we’d love to hear from you.

Transforming perceptions of disabled people in the fitness industry

Guest post from Josh Goodfellow, a 21-year-old fitness professional and bodybuilder. Josh has cerebral palsy which affects his lower limbs. Through his work he aims to transform people’s perceptions of disabled people in the health and fitness industry.

Three men in the gym with JGFitness clothesHow did you get into bodybuilding?

As a former sprinter I was always heavily influenced in sport and the positive effects it had on me and my cerebral palsy growing up. After retiring from the track, I started working in a local gym as a Personal Trainer. I wanted to find something that would give me the same competitive “buzz” that athletics used to. I began casually weight-lifting and after six months of training I got the bug and began to explore bodybuilding.

In April 2014, I found out about a show called Hercules Olympia run by the legendary Scott Horton. The show took place in May 2014 and to my knowledge it was the first show to feature a disABILITY Class among a mainstream showcard in the UK.

Hercules Olympia opened the door for disABILITY bodybuilding.  It’s success allowed disABILITY bodybuilding to develop and people began to understand why it deserved a place in the industry.

What are the benefits of bodybuilding?

When people think of bodybuilding they may think of negative stereotypes such as performance enhancing drugs and aggression. When I think of bodybuilding I see it as something that gives you the opportunity to change your life.

Bodybuilding changed my life and allowed me to take control of my cerebral palsy. I no longer let it dictate my life. Through adaptive training methods it allowed me to physically develop to what I am today. Granted, I still trip over fresh air from time to time, but that’s all fun and games!

Bodybuilding has also been a fantastic social outlet. The people I meet and converse with on a daily basis are fantastic. I have met some of my best friends through the industry.

What’s the reaction been like at the bodybuilding shows?

So far it’s been a HUGE success. The reactions we’ve got from the crowds, competitors and social media have told me everything I needed to know.

We’ve had such a great reaction that it has allowed the sport to grow and develop.  So much so that in November 2014 a federation called Pure Elite committed to hosting a disABILITY Class too. It’s given the athletes personal exposure and it’s given the sport the exposure and awareness it needs.

How can someone get involved?

First of all – you don’t have to decide to become a bodybuilder to get involved with the growing number of people with disabilities heading to the gym.

Getting active is crucial. You don’t have to lift heavy weights and count every calorie to enjoy the benefits of exercise. Get to grips with your condition, establish your boundaries and then work towards developing those boundaries as you become fitter and stronger.

If you want to get involved with bodybuilding start by researching training procedures that will allow you to train safely. Look for a coach or experienced professional that can work with you towards your goals. Finding someone that can support you is crucial. Without my coach, Steve Winter, I’d have found it incredibly difficult to get into the shape required to contest a bodybuilding show. A coach is also there to keep you mentally on track when things get difficult, and trust me… they will!

What are your hopes for the future?

2015 promises to be the best year yet with nine disABILITY bodybuilding categories already confirmed for 2015. I’d love to see disABILITY bodybuilding continue to grow – more competitions, competitors, and opportunities.

It’s fantastic to be part of this flourishing movement. I and my business JGFitness will ALWAYS be there representing and fighting the corner for disABILITY bodybuilding.

For details on the 2015 calender, advice, and competitive opportunities like JGFitness on Facebook.

We currently have a health and fitness Q&A with a disabled sports specialist happening on our community, so please do get involved!

Five wheelchair exercises you can try at home

As part of our January health and wellbeing theme, we’ve asked Kris, founder of Wheely Good Fitness, to do a guest blog for us on his top five stretch exercises to help increase flexibility and movement.

For those of us new to exercise or restricted by the side effects of disability and health conditions, starting can be extremely daunting. Many of us will be familiar with the saying ‘use it or lose it.’ So it’s important to try as much as possible to keep what we have and improve where we can, to prevent additional health problems.

One of the first things we can lose is our flexibility. Reduced flexibility can restrict our movements, causing stiffness and aches.  Performing stretches on a regular basis can help maintain and improve flexibility, and can easily be made a part of your daily routine.

Here are five important upper body stretches that can be done at home – you can sit either in your wheelchair or on any chair in your house. For all of them, remember to sit upright, with belly button pulled in tight, feet hip-width apart (if your wheelchair allows it).

Chest Stretch

  • Shoulders down
  • Take the arms out to the side of the body
  • Palms facing forward
  • Arms at shoulder heightMan in wheelchair performing chest exercise with arms outstretched
  1. Breathe normally throughout, with your head facing forwards.
  2. Keep your shoulders relaxed. Bring your arms slowly together in front of your body, so your palms touch.
  3. Keep them straight and at the same height as your shoulders.
  4. Slowly take the arms out to the side, with palms facing forwards, until you can feel a stretch across your chest.
  5. Try to hold the position for up to 10 seconds.

Back stretch

  • Shoulders relaxed
  • Take the arms forward slightly, rounding the back
  • Head tilted forward
  • Arms out straightMan in wheelchair performing back stretch, with arms stretched forward and head down
  1. Keep shoulders relaxed and avoid rolling them forward as you move into the stretch.
  2. Bring your arms in front of your body, keeping them straight, palms facing down.
  3. Imagine there’s a rope tied around your wrists, pulling you forward, so you can keep extending your arms.
  4. Allow your lower back to round a little and tilt your head down – you should feel a stretch through the lower and middle part of your back.
  5. Breathe normally, and be aware of your balance.
  6. Try to hold the position for up to 10 seconds.

Upper body stretch

  • Take the arms out to the side of the body
  • Bring the arms up and over the head
  • Head facing forwards
  • Take the stretch up through the bodyMan in wheelchair performing upper body stretch, with arms stretched upwards
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start with your arms down by your sides, then slowly bring them out to the side (like wings), taking them as high above the head as you can. As your arms reach shoulder height, lift your chest and torso with them and try to make yourself taller.
  3. Try to hold the position for up to 10 seconds.

Oblique stretch

  • Take the arms out to the side of the body
  • Bring the arms up to shoulder height 
  • Keep upper body fixed
  • Rotate the body to the sideMan in wheelchair performing oblique stretch, with arms bent out to the sides
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Start by bringing your arms out to the side of the body, elbows flexed and at shoulder height. Keeping your arms, head and upper body fixed, rotate to the side using the lower part of your back until you can feel the stretch down the sides of your body.
  3. Try to hold the position for up to 10 seconds, then switch and do the other side.
  4. Breathe normally, and try not to lean into the stretch or you won’t get the full benefit.

Hand stretch

  • Shoulders down
  • Take the arms out in front of the body
  • Palms facing down
  • Arms out straightMan in wheelchair performing hand stretch, with arms stretched out forward
  1. Keep your shoulders relaxed, avoid lifting them up to your ears when you start the stretch.
  2. Bring your arms straight forward in front of your body, palms facing down.
  3. Extend your fingers and thumbs, widening as much as possible until you feel a stretch through the palm of your hand.
  4. Try to hold the position for up to 10 seconds, then switch and do the other side.
  5. Breathe normally, and keep facing forwards.

Some of these stretches can be adapted into exercise movements that you can perform to your favourite music:

  1. Begin by moving the arms in a gentle marching movement to the beat.
  2. Once comfortable change to a similar move as you did for the chest stretch, gently taking the arms out to the side and back in front again eight times, almost like a wide clapping movement and then go back to marching again.
  3. If you feel able to continue, you can then bring in a version of the upper body stretch by taking the arms to shoulder height and down again, repeating 8 times before going back to the march.
  4. The oblique stretch can then be added in for eight moves before returning back to the march.

This short sequence will give you a little bit of an aerobic workout and you can increase how long you perform it as it becomes easier to do.  Begin gently if only for a couple of minutes depending on how challenging you find it and progress as you feel able.

You can also watch our film featuring Kris to find out more.

We currently have a health and fitness Q&A with a disabled sports specialist happening on our community, so please do get involved! 

Blue Monday? Pah!

Monday 19 January is supposed to be the most depressing day of the year. But we’d rather look on the bright side of life instead! 

We put a shout out on Facebook and our online community for positive stories. We wanted to know what great things disability has brought into people’s lives, the little everyday things that make them smile, and barriers that have been overcome. Here are just a small selection of what came back…

…from Facebook:

“I’m 23 and have cerebral palsy. When I was little, splints only came in plain white plastic. My Mum wanted to make them fun for me and she would put all sorts of pretty stickers on them :)” – Caitlin

“Waking up every day to my very smiley little girl makes every day a happy one for me even the rainy ones. She has CP and is the most determined little lady I’ve ever met. She has made me appreciate so much more in life and has taught me patience. She is my best friend and I love her more than words could describe.” – Elena

“I work with adults with learning difficulties and it’s such Young disabled man jogging with womana rewarding job. I couldn’t think of anywhere else I’d like to work. I go home every night smiling :-))” – Racheal

“Since our daughters diagnosis we have made some wonderful new friends. Also seeing my gorgeous daughters smile.x” – Lesley

“My lovely son and I running together makes me :)” – Michelle

…from our online community:

“Earlier this year I decided that it was about time I stopped worrying and started working towards my dream. So in September 2014 I started my own blog about living positively with Cerebral Palsy and mental health issues, since starting my blog I’ve had so much support and my confidence has increased so much. One thing that has made me incredibly happy is knowing that I am helping others so my ultimate dream is to set up my own business raising awarenessMotivational quote that reads: The Greatest pleasure in life is doing what people say you cannot do and letting others know that a disability doesn’t have to stop you enjoying life :)”  – ChelleM

“When I was first diagnosed with CP, they said that I’d never be able to walk, talk or even think for myself but 20 years on and I’m a right chatterbox, I’ve got an awesome penguin walk and I’m able to live an independent life :)” – Dizzydingbat

“Having a disability, perhaps has taught me, to try not to be too hard on others, and not to be judgmental, and maybe a little more understanding, although I’m learning all the time!” – Noah

“My beautiful eldest son will be 21 on Monday 19th January, he is on the autism spectrum and he makes me proud every day! He has achieved so many positive things, and overcome many challenges. I am grateful he is in my life ❤” – Vickey

And here are just some of the positive disability stories from the wider world we’ve enjoyed lately:

We loved hearing about a young nature photographer with DYoung disabled man holding cameraown’s syndrome, whose unique way of seeing the world has earned him over 55,000 fans.

A little boy called Oliver with visual impairments, cerebral palsy and autism said “I love you” to his mum for the first time, after receiving support from his assistance dog Lucy.

A young man with one hand has defied his teachers by achieving his dream to become a successful pianist.

We thought these photos showing 15 amputees using humour alongside their impairment was a great way to present disability positively.

And Grace, one half of the Mandeville Sisters made us laugh with this brilliant vlog on why having one hand is better than having two.

If you have any positive stories to add, please tell us! 

What does good co‑production look like?

Our service in Leeds has been awarded a certificate of appreciation for “true co-production” from EPIC Leeds. We asked Sara Smithson, Chair of EPIC Leeds, to tell us about the award and the importance of co-production:

The Certificate of appreciationEach year EPIC Leeds take time out to celebrate successes and say thank you to those who have worked with us to make Leeds a better place for disabled children, young people and their families. We have seen significant changes over the past year with introduction of the special educational needs and disability reforms and roll out of the Independent Support Programme. In these changing times, partnership working and listening to parents is crucial to make sure the benefits of new legal rights become a reality.

Why did you give Scope an award?

Because of them having developed such a fantastic relationship. We like Scope’s enthusiasm to improve the world for disabled children and young people. Scope says ‘yes’ to ideas and new ways of doing things which was evident in development of the Independent Support programme:

  • Researching through semi-structured interviews, focus groups and activities with children and young people. Getting their views on what was and wasn’t working in the SEN process and what they’d like to see from the upcoming independent support programme.
  • Working with parents, children, young people and frontline professionals to design a service which was meaningful to them and would work in the ‘real world’.
  • Having ALL parties round the table to create a Memorandum of Understanding. Sometimes this involves moving meeting dates four times to accommodate everyone’s diaries. Doing this shows the importance placed on representing everyone’s view.
  • Creating an atmosphere where all partners can collaborate, discuss and work out a way of making this programme work. And recognising that the expertise is in the room and no single party can achieve this alone.

In your view, what does good co-production look like?

To put it in a nutshell: being equal partners in every aspect from the beginning. Doing things together and not having things ‘decided for’ and done ‘to you’. EPIC created a guide to Effective partnership and consultation (PDF). I would urge every organisation or agency to use it to direct how to work with families with disabled children. It describes ways of creating an ‘us together’ rather than the age old ‘us’ and ‘them’ approach which ticks boxes but doesn’t create meaningful relationships and a real change.

What difference does good co-production make to disabled children, young people and their families?

Ultimately it means a better world for disabled children, young people and their families. Their views, ideas and contributions are included in things that affect them. When co-production is done well, there is no longer a perceived hierarchy of opinion, everyone’s experience, thoughts and insights are valued. Who wouldn’t want to feel valued and listened to?

Coventry welcomes our new Face 2 Face service

(Pictures by (c) Jon Mullis/Bullivant Media 2015)

Last week we launched a new Face 2 Face service in Coventry. We shared the stories of two befrienders – Donna and Louise. During the event we asked attendees to share their hopes for the service. Here are some of our favourites:

“May the parents get the help they need and deserve. Go Face 2 Face Coventry!”

“All the best for the new Face 2 Face project in Coventry. It’s very exciting to see it taking off in the area – a very needed and worthwhile service.”

“A friend when in need is a friend indeed! Good luck for a successful future.”

“Through the launch of this service that no parent or carer of a disabled child feels isolated or overwhelmed by emotions but can receive the help they need to move forward.”

“Welcome to Face 2 Face and your befrienders. The support that they offer will be invaluable to parents in the area. As a parent of adults with hidden disabilities, I recognise the isolation and confusion – your volunteer will give much valuable support. Thank you!”

“Welcome to Coventry you are a necessary and important organisation doing a wonderful job. As the Children’s Champion for Coventry I would like you to know my door is always open to you, should my support be needed.”

face2face1

Local groups and the council also came out in support:

“A much needed service for Coventry Parents… a big welcome” – The Special Educational Needs and Disability Information, Advice and Support Service (SENDIASS)

“Hope the future helps parents feel that they are not isolated and have nothing to feel ashamed or embarrassed about and that they should be very proud and feel special that they have been put into an unknown situation but have a beautiful child. This is a brilliant service. Good luck” – Young Carers Service.

“Good luck with the new Face 2 Face service” – Shine Charity

“Looking forward to working with you all in the future!” – RNIB Three Spires Academy

“I think your service will be so valuable in Coventry. So many parents need support, and ask what support is out there for them. Good Luck” – CEREBRA

Find out more about Face 2 Face in Coventry.

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 "Galaxy".
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. 

Scope exists to make this country a place where disabled people have the same opportunities as everyone else. Until then, we'll be here.

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