All posts by Alex White

Alex White is Scope's Information Content Manager.

“All disabled women should be sterilised” – Disability History Month

Psychotherapist and writer Antonia Lister-Kaye is 85. She is one of a number of older disabled people who contributed to The Disability Voices website at the British Library Sound Archive as part of Scope’s Speaking for Ourselves project.

For Disability History Month, Antonia looks back at how attitudes have changed to disability during her extraordinary life.  

I was kept in a chicken incubator!

Antonia with nanny
Antonia with nanny

My mother was a Christian Scientist, and she didn’t like doctors. I think it was explained to her that we must at least have a nurse. My father got a chicken incubator from his brother, who was a farmer, rushed to the house, and I never went to hospital. I was kept in a chicken incubator in my father’s study, and they did have this nurse, that was a compromise, but my mother didn’t see me for weeks and weeks, because she was quite ill. I don’t think she wanted me anyway. I know she didn’t, because she was only very young, and, you know, didn’t know much. She wouldn’t have had me if she’d known anything. But I think that’s how I came to be how I am.

“All disabled women should be sterilized.”

My mother-in-law was absolutely furious because I had a disability, and she thought it was genetic. A fortnight before my baby was born, she suddenly said, ‘Well, you know, personally, I think all disabled women should be sterilised.’

Teaching in a night school under Apartheid

Former South African President Thabo Mbeki
Former South African President Thabo Mbeki

One of my students, for a short time, was Thabo Mbeki, the former President of South Africa. He was a very clever man, and he was a very beautiful man, too. He was about 19, I suppose, when I taught him. We followed syllabuses from London External Examinations. You could do exams which were called ‘London External Degrees’, in those days, and we based our teaching on those. I taught History, and they were all mad keen to do the French Revolution and the feudal system, that was their two favourite topics… I think I only taught him for a short time, but there were equally interesting students, but he was the cleverest.

Hear more of Antonia’s experiences of the apartheid regime. 

Legalise cannabis campaign

Antonia smoking a joint in a Amsterdam cafe
Antonia smoking cannabis in Amsterdam

My naughty daughter, Frankie, used to get hold of cannabis; this was in the seventies, and bring it home and smoke it, so I said, ‘Oh hey, give us a go,’ and because I knew people who smoked cannabis in the fifties, in Hampstead, you know: well, they do everything in Hampstead, before they do it anywhere else, and so she gave me a joint, and I smoked it.

I did, I’m not a smoker, so I didn’t inhale properly, but I said, ‘God, Frankie, the pain’s dropping out of me fingertips,’ and so she said, ‘Oh Mum, isn’t that interesting? Have another one. I’ll roll you another one.’ … and after that, I read an article, in The Independent, written by somebody with MS, called Liz, who lived in Leeds, and she wrote about the marvelous effect of cannabis on her MS, so I thought, ‘God, I must find out more about this lady…’

Listen to Antonia’s life story on The Disability Voices website.

You can also buy Antonia’s memoir, Broccoli and Bloody Mindedness on Amazon. 

Read the rest of our blogs for Disability History Month.

Tech4Good awards: inclusion means everyone’s a winner

The Tech4Good awards were created by the charity AbilityNet with the help of BT to highlight the empowering influence of digital technology – whether it’s at home, at work, in education.

There were lots of great ideas this year but here were some of my favourites that used technology to make the world a more accessible place for disabled people.

Wayfindr

Visually impaired woman uses smartphone to navigate in station
Visually impaired woman uses smartphone to navigate in station

Accessibility Award winner Wayfindr is an audio-based, open source app that allows visually impaired people to navigate the world independently. It uses smartphone technology and offers directions for stations, hospitals and shopping centres. In the future the project aims to provide navigation wherever you are in the world!

OxSight

SmartSpecs
SmartSpecs

OxSight have created ‘Smart Specs’, an augmented reality display system that allows people to regain a sense of independence. It helps make sense of the physical environment by simplifying the ambient light, translating it into shapes and shades so that people can discern physical objects and perceive depth.

The Great British Public Toilet Map

Toilet map on smartphone
Toilet map on smartphone

The NHS has estimated that 3-6 million people manage reduced continence due to medical or health reasons. Public toilets are a necessity, but with funding being cut, they can be difficult to locate, and are often not accessible. The Great British Public Toilet Map provide a database that allows you to filter results to suit you, including finding accessible toilets and baby changing.

South London Raspberry Jam

Inspired by his love of coding, and his Tourette’s Syndrome diagnosis at the age of seven, Femi Owolade-Coombes set up a crowdfunding campaign for an Autism and Tourette’s Syndrome friendly ‘South London Raspberry Jam’. As a result, Femi has introduced over 100 young people and their families to coding – all for free, and all at the age of just 10 years old.

AsthmaPi kit

But the overall winner of Tech4Good is aged just nine years old! Arnav Sharma has an aunt with asthma and set out to find out more about the condition and how he could use tech to help. Using Raspberry Pi, gas and dust sensors, Arnav’s AsthmaPi kit can help parents of children suffering from asthma. Using email and text message alerts, patients receive prompts to take medication and reminders for review visits.

Read more about the Tech4Good awards.

What is cerebral palsy?

March is Cerebral Palsy Awareness Month. Scope helpline manager Veronica Lynch answers the most common questions she is asked about cerebral palsy, particularly the causes and effects of this condition.

Cerebral palsy is a neurological condition in which parts of the immature (up to age of 5 or 6 years) brain is injured or impaired. This injury generally affects muscles and balance and can result in a physical and/or sensory impairment. Cerebral palsy is the most common childhood disability affecting about one in 400 live births.

What are cerebral palsy symptoms?

The effects of cerebral palsy can range from extremely mild to profound with additional sensory or learning impairments. The condition is individual so no two people will be affected in the same way.

It’s impossible to give a list of symptoms as each person will be different. Doctors will generally look at any issues during pregnancy or at the time of birth, run neurological tests such as MRI scans (although a child could have cerebral palsy and this may not be depicted on an MRI) and observe the child as he or she develops. The average age for diagnosis is around 18 months to two years.

What is cerebral palsy caused by?

There could be a number of causes of cerebral palsy, such as an infection during pregnancy, oxygen starvation, failure for the brain to develop correctly. It is more common in twin or multiple births or in low birthweight and premature babies.

There is often no obvious cause. Recent research has shown there may be a genetic cause in about 14% of cases but more research is needed in this area.

Who does cerebral palsy affect?

Cerebral palsy can affect anyone although it is more common in boys than girls.

What is cerebral palsy life expectancy?

It’s possible for someone with severe cerebral palsy to have a shorter life expectancy either because the impairment to the brain is so severe that they do not survive to adulthood or because their posture and organs are affected causing respiratory or heart problems. However, in general, people with cerebral palsy will have the same life expectancy as anyone else. Read more about ageing and cerebral palsy.

We want to say a huge thank you to Veronica, who, after 26 years of working for Scope, is retiring at the end of March. Our helpline team especially will really miss her!

2015: a year in the life of Scope helpline

In 2015, the Scope helpline received over 17,000 telephone calls, 5,000 emails and responded to a huge variety of posts on Scope’s online community and social media networks.

People asked about all sorts of things relating to disability, from housing to Motability, from recycling disability equipment to taking part in sport. When we add views of our online help and information, we have supplied answers to over three quarters of a million requests in 2015. Continue reading 2015: a year in the life of Scope helpline

Disability services in Finland: a better life?

Recently Jean Merrilees returned from spending three months at a regional centre that assesses people for equipment in Finland, as part of her degree in Occupational Therapy at the University of Northampton. Having worked for Scope for a couple of decades, advising disabled people on a wide range of issues, it was a good chance to reflect on how disability services in Finland compare to those in the UK. Continue reading Disability services in Finland: a better life?

Self-publishing: How do I publish my book?

Following our In The Picture campaign to include disabled children in the books they read, Scope published children’s storybooks,  My Brother is an Astronaut and Haylee’s Friends.

As a result, we receive quite a few approaches from people wanting to publish books about their experiences of disability, either as a disabled person or family member.

Much as we might like to, we can’t become a mass publisher but we’d love to see your books get published! Here are some people we know who have done just that.

Brighton Face 2 Face parent befrienders

Brighton Face 2 Face parent befrienders with their Paperweights book
Brighton Face 2 Face parent befrienders with their Paperweights book

Parents and carers of disabled children in Brighton and Hove joined a creative writing group and have published an anthology of their moving poems and short stories.

Kate Ogden, who ran the group, says: “The woman on my course inspired me, impressed me and surprised me. I believe it was the first course of its kind for parent carers, and I really hope it wasn’t the last. We have dreams of taking this nationwide, and the group went from struggling to say things out loud to shouting from the rooftops: our stories must be told.”

Parent Tracy Harding agrees, “We came together as strangers with something in common: coping with our children’s diagnosis through every type of obstacles life put in our way. All of us felt the therapeutic effect that comes from listening to others’ stories. Deeply identifying with every personal story. Opening our hearts and feelings with complete strangers brought us so close. Even though the disabilities were so diverse among our group our experiences were all so similar. Our anthology shows evolution and the journey from acceptance to continuing progress.”

The collection, Paperweights, is available to buy at Waterstones in Brighton  for a donation of £5. All the money raised from the sale of the books will go to the Brighton Face 2 Face appeal.

Beaumont College: Creating Catpig

Disabled students from Beaumont College have written and illustrated a children’s book called The Adventures of Catpig.

Catpig
Catpig

Beaumont’s Lauren Blythe says: “We created the book by hand using various craft materials, then we scanned each page into a Word document. We then printed these flat pages out and went around each character with a permanent marker due to our lack of Photoshop technology. We then scanned in our hand-edited pages and pieced them together on a Word document. The next stage was to send this document to a printing service”

“We have been lucky enough to win a creative enterprise award, which we collected at a local awards ceremony. We also did a speech using a communication device to share with the public something new they might not have seen before.”

Contact lauren.blythe@scope.org.uk if you would like to purchase a Catpig book, mug or shopping bag!

Crowdfunding for books

Here are some examples of books looking for funding:

Tips for aspiring authors

Helping with the extra costs of disability: our new money information hub

Following the Extra Costs Commission, a year-long independent inquiry into the extra costs faced by disabled people, we’ve been working with the Money Advice Service to develop the information on our website so it has a greater focus on the needs of disabled people as consumers.

The Extra Costs Commission found that disability-specific information can be hard to find on the web unless you know it exists. As a result, we’ve created a new area of our website to provide impartial money management and cost cutting advice to disabled people.

We hope that this new hub helps to filter useful information and that our online community offers a space for disabled consumers to share shopping experiences and tips.

Extra costs of disability

On average, life costs you £550 more a month if you’re disabled. These costs make it harder to save and increase the likelihood of falling into debt. Here’s how our new hub can help:

Managing your money

To help manage the extra costs of disability, here are a few positive steps you can take:

Bank accounts, credit cards and loans

As well as free and impartial money advice, our new money section features video guides on how to choose a bank account and access to online tools that can help you compare prices.

Savvy disabled consumers

We’ve also got money saving tips on a range of consumer issues, including:

Visit our money hub to find out more, or share your own money saving tips on our online community.

15 ways to search for jobs using social media

Future Ambitions is a brand new service aimed at supporting young disabled people aged 16 to 25 in Hackney, Islington, Newham and Tower Hamlets into long-term sustainable employment. Here are their tips to search for jobs online and using social media:

1) Ask your friends
Post a simple, polite, professional status asking if anyone knows of a place that is hiring. You may even want to be a more specific about your needs. Ask if anyone knows of an open position in the area you want to work in. Chances are that at least one person knows about a potential job opportunity. Even better, you may have someone ask for an interview right then and there!

2) Search
Put jobs into the Google or a company’s search box and see what comes up!

3) Like company Facebook pages
What are your interests? Like pages of companies you’d like to work for. They will often post their jobs on Facebook as it’s cheaper than traditional advertising.

4) Follow companies on Twitter
Follow companies you might want to work for. They may post links to their jobs on their Twitter feeds.

5) Search hashtags
#job is a good way to see jobs posted on Twitter or Facebook, you might need to narrow down the search to UK or local area only #job

It’s best to search Twitter at times when local companies would be posting jobs, for example, 9am -5pm.

6) Job search on LinkedIn
LinkedIn is like an online CV so follow the same rules:
• Be clear with your objectives in your personal profile
• List your most recent job or training first
• Be professional
• Be honest

8) Follow companies on LinkedIn
You can also follow a company on LinkedIn, meaning all the jobs they advertise come up in your news feed.

9) Be consistent online
Use your real name on social media, keep a consistent tone and think of it as your personal empire. Of course your Facebook ‘About’ will be different from your LinkedIn profile description. If you keep the general tone similar, you’ll look in control.

10) Google yourself
A bit obvious this one, but don’t just check the first page. Beady-eyed employers will go a few pages back.

11) Request your Twitter archive
Go into your Settings. Click the Account tab. You can find how to request an archive containing all the tweets you’ve ever sent. Check over the last two years. Use programs like Tweet Eraser to search for the offending tweets.

12) Find hidden vacancies
Many employers will fill vacancies by word-of-mouth, headhunting or recruiting internally. Knowing how to get yourself in contention for these roles could give you a major boost in finding your next role.

13) Use your network
Using your network is the other main way to find hidden positions. Past employers, colleagues, friends, family and just about anyone you meet can form your network. Serious jobseekers treat even the most casual of meetings as a potential job lead.

14) Make prospective calls
Even if an employer doesn’t have any current vacancies, they may be willing to create a position if an exceptional applicant comes along. Contact companies to ask if they have any opportunities for somebody with your skills. Call the manager of the department you’re looking to work in but avoid busy times. Follow up with an email, thanking them for their time and attach a copy of your CV.

15) Contact us
Future Ambitions is supported by the Credit Suisse EMEA Foundation. For more information, call 07807 799 928 or email future@scope.org.uk

Games all children can play

Jackie Hagan works with disabled and non-disabled children at Scope’s inclusive nursery at Walton Children’s Centre in Liverpool. In our new video, Jackie shows how it’s easy to include all children in play with a little imagination:

View an audio description version of this film

All families are different but one thing they all have in common is that all children have the right to play.

Regardless of your child’s age or ability play is fun, relaxing and is something that you can do together.

We live in a material world, but play does not have to be expensive. Children love to play with household items which can then be put together to make a sensory box to help children explore different textures and sensations.

How many times do we see children playing with the box instead of the toy; so why not use this opportunity to paint the box together and make a den.

Communication is key to children’s development and supports their social skills. Puppets can be made from wooden spoons and surplus material, or recycle your plastic bottles and using dried pasta and colourful paper make musical shakers.

Get down to your child’s level, play and have fun!

For more tips, go to our Games All Children Can Play pages.

Please note: supervision is essential. Don’t let children play alone with homemade toys.

2014: a year in the life of Scope’s helpline

In 2014, Scope’s helpline received thousands of telephone calls and emails and responded to a huge variety of posts on Scope’s online community and social media networks. People talked about all sorts of things relating to disability, from housing to Motability, from recycling disability equipment to taking part in sport. When we add in the unique views of our information on the Scope website, all in all we reached over half a million people.

We thoroughly enjoyed hearing the reactions to the End the Awkward campaign and Strip for Scope. Thank you to all of you who got in touch with us, we enjoyed sharing your feedback.

We launched a revised version of the Parent Information Guide aimed at parents of young and newly diagnosed children and we have also been busy writing information products. Check out the Scope website for the following new information:

Training

It’s really important that we keep up with all the changes that are happening in the disability field so we’ve been on several training courses. We’ve attended training on changes to the Welfare system including Universal Credit and PIP and we’ve learned more about Healthcare Budgets, Direct Payments, Housing, Community Care and special educational needs. One member of the team attended a two-day training session all about sleep.

Places we’ve been

Occasionally we manage to get out of the office and meet people face to face. We’ve visited some DIAL advisory groups and had a stand at Kidz in the Middle exhibition in Coventry, the UK’s largest exhibition for parents of disabled children and professionals. We were present at the SEN and Disabilities Conference at the Royal Society of Medicine and visited the Royal Bank of Scotland HQ. And we managed to get out to some Sure Start Centres.

The team

Each member of the helpline team has a specialism aligned to one of Scope’s strategic themes. As well as getting general information on all aspects of living with a disability, you can speak to us in detail about:

We also managed to fit in an office move with little disruption to the service, thanks to everyone’s hard work. And we’ve just recruited an extra team member.

The enquiries we receive on the helpline really help Scope to understand the issues that people are facing. This means that (with your permission) we can inform our colleagues what you are telling us and they can use that information to decide what campaigns or policy work we need to do. Your calls about the delays to PIP were very helpful. We collected evidence and sent it to the Department for Work and Pensions to highlight the various problems claimants were experiencing. Your calls also contributed to the work we are doing with our Extra Costs Commission. We’re always looking for stories and case studies to put forward to our stories team to raise awareness of the issues affecting the people contacting us. All of this work continues and we are excited about the new challenges ahead in 2015.

So we’ve been extremely busy supporting disabled people and parents with disabled children and we’re really looking forward to the year ahead. Thank you to everyone who has contacted us in 2014 and may we wish you all a very Happy New Year.

For free, independent and impartial emotional support or disability advice, contact Scope’s free helpline on 0808 800 3333  or helpline@scope.org.uk. You can also talk to others online.