Enable July / August 2022

The UK’s leading disability and lifestyle magazine

enablemagazine.co.uk

July / August 2022

AUTISM DIAGNOSIS: THE WAITING GAME

Calling for shorter wait times and increased support

SUMMER DAYS OUT

The best accessible places to visit this summer

Samantha

RENKE

On being authentic, challenging perceptions of disability and her next steps in her new memoir

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The Motability Scheme is administered by Motability Operations Limited (Registered Company No. 1373876), City Gate House, 22 Southwark Bridge Road, London SE1 9HB. The facilities offered are for the hire (bailment) of goods. You will not own the vehicle. Agreement subject to acceptance and age restrictions may apply. The agreement can be terminated early with the consent of Motability Operations Limited and administrative charges may be applicable. Mileage allowance of 20,000 miles per annum over three- or five-year terms. To qualify you must be in receipt of one of, the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or the Armed Forces Independence Payment (AFIP), which will be taken in lieu of the four weekly hire rental. Attendance Allowance is a nonqualifying allowance. Terms and conditions apply and are available on request. Lookers is a trading name of Lookers Motor Group Limited, 3 Etchells Road, West Timperley, Altrincham, WA14 5XS, registered in England & Wales Reg. No. 143470.

Authorised and regulated by the Financial Conduct Authority. We are a credit broker, not a lender and can introduce you to a number of lenders. Introducing you to a number of lenders means we receive a commission. Lenders pay commission at different rates either as a fixed fee or as a fixed percentage of the amount you borrow.

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Welcome Get ready to enjoy another exciting issue of Enable Magazine for July/August

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EDITOR’S PICKS...

18 CELEBRATING WOMEN IN BUSINESS This issue, female entrepreneurs Shani Dhanda and Jennifer Lake give Enable readers their advice on building a business.

38 DESTIGMATISING SCHIZOPHRENIA Schizophrenia is often shrouded in stigma and misunderstanding. One person living with the condition shares how they would like to see perceptions change.

64 THE ROAD TO BIRMINGHAM 2022 As the UK prepares to host the 2022 Commonwealth Games in Birmingham, we get to know athlete and Batonbearer Freya Levy.

his issue of Enable is packed with engaging content to read throughout the summer. As we celebrate the passing of the Down Syndrome Bill, three people who were involved in the historic event share their stories on page 10. Social care has continually been hit with staffing issues and funding cuts, but could an integrated health and social care system make a difference? On page 13, Disability Rights UK and the APPG on Disability outline the pros and cons.

Years of disruption mean wait times for medical appointments are still too lengthy. On page 25 we explore why the wait for an autism diagnosis is so long, and on page 30 we highlight the need for more fibromyalgia support.

Inside this issue, we’re celebrating voices in the disability community: on page 22 cover star Samantha Renke takes us behind the scenes of her debut book; content creator Nina Tame shares her experiences as a disabled parent on page 28; and three projects centred around young disabled people give insight into their work on page 54.

This summer, make the most of the weather with accessible days out on page 42, our best gardening tips on page 45 and a recipe from Mary Berry on page 51.

Plus, founder of The Valuable 500, Caroline Casey writes about the current disability pay gap on page 68; we showcase the best ways to upskill on page 72; and an occupational therapist tells you what to expect Get in touch on page 81. This and much more inside. editor@enablemagazine.co.uk facebook.com/enablemagazine twitter.com/enablemagazine

Emma Storr, Editor

instagram.com/enablemagazine

Behind the scenes

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PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Caroline Casey Jane Hatton Nikki Pattinson Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG

HIGHLIGHTING ACHIEVEMENTS

Tel: 0844 249 9007

Over the next few months, Enable’s editor Emma is getting ready to judge Scope’s first ever Disability Equality Awards. Did you enter?

GETTING ACTIVE

This July, Enable’s sales director Marian is putting her training to the test and taking on a 26.2-mile trek through Glen Coe, equivalent to a marathon.

ONLINE

Visit the Enable website to ensure you never miss the latest news, interviews and information from the disability community.

©DC Publishing Ltd 2022. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every effort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.

WIN

Enter our competition to win a Microsoft Surface Laptop 4 worth £1280 on page 52 enablemagazine.co.uk

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What’s inside July / August 2022

Care

13 DEBATING INTEGRATED CARE Two organisations highlight the pros and cons

Voices

16 THE DAY OUR WORLD CHANGED One carer shares their story 20 SHARING OUR RELATIONSHIP Breaking the taboo around interabled couples

Life

10 PASSING THE DOWN SYNDROME BILL The people who helped to pass this historic bill share their stories 25 AUTISM DIAGNOSIS: THE WAITING GAME With children waiting nearly five years for an autism diagnosis, what needs to change?

28 GROWING YOUR FAMILY Nina Tame discusses perceptions of disabled parents

41 FURTHER DOWN THE ROAD Tim Rushby-Smith on how young people accept diversity

38 DESTIGMATISING SCHIZOPHRENIA Increasing awareness to improve quality of life

Spotlight

42 SUMMER DAYS OUT The best accessible places to visit

22 SAMANTHA RENKE Exploring self-love and honesty in her debut memoir

46 YOUR SUMMER READING LIST Relax in the sun with one of our top reads

18 CELEBRATING WOMEN IN BUSINESS Shani Dhanda and Jennifer Lake discuss their paths and share advice

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45 SUMMER GARDENING Try a new hobby this July and August

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82 51 10

42

WIN

A MICROSOFT SURFACE LAPTOP 4 WORTH £1280 ON PAGE 52 49 THE DIARY Our pick of events this summer 51 RECIPE: MARY BERRY’S VICTORIA SPONGE SANDWICH Mary Berry shares one of her favourite recipes 54 PROMOTING FUTURE VOICES The youth projects highlighting young disabled people’s ideas 56 THE RIGHT TO AN INDEPENDENT VOTE Lord Chris Holmes discusses the importance of in secret voting 62 PRODUCT ROUNDUP Products to help you around the home 81 WORKING WITH AN OCCUPATIONAL THERAPIST OT Jessie Basra explains what you can expect 82 YOUNG CARERS’ LIVES IN FOCUS The photography project tackling isolation

Health

30 FIGHTING FOR FIBROMYALGIA RECOGNITION The need for better awareness of the chronic condition

33 COMMUNITY IN RECOVERY Finding support after a brain injury

Motoring

36 HIGHLIGHTING NON-VISIBLE DISABILITIES Tackling misunderstanding and stigma

Employment

Sport

64 THE ROAD TO BIRMINGHAM 2022 Enable meets athlete and Batonbearer Freya Levy

Finance

66 CALLING FOR COST OF LIVING SUPPORT What financial aid can you expect as prices rise?

68 THE DISABILITY PAY GAP Founder of The Valuable 500, Caroline Casey, shares her view

58 REVIEW: MG ZS EV Alisdair Suttie hits the road in this SUV

71 REPRESENTING COLLEAGUES’ INTERESTS AT CO-OP How a colleague network is advancing inclusivity 74 MAKING YOUR BUSINESS IDEA A REALITY Two entrepreneurs share their experiences 77 FINDING INCLUSIVE EMPLOYERS Jane Hatton reveals her top tips 79 PROMOTING INCLUSION AT WORK Feeling accepted at Registers of Scotland

Education

72 TIME TO UPSKILL Get ready to take your skills to the next level

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News DanceSyndrome celebrates £179,483 funding AWARD-WINNING DANCE CHARITY DanceSyndrome has received more than £179,000 in funding from The National Lottery Community Fund which distributes money to projects supporting people and communities to prosper and thrive. The new funding will enable the charity to grow their current provision which had to be reduced during the coronavirus

pandemic due to multiple lockdowns.

DanceSyndrome will continue to deliver weekly dance sessions, accredited dance leadership training and performances to demonstrate the power of inclusion, but the additional funding will allow the charity to advance this provision allowing them to train more professionals, and work with new individuals and businesses.

Households to receive first cost of living payment this July

NEW DISNEY MOVIE HIGHLIGHTS INCLUSION IN FILM DISNEY IS SET TO MAKE a new movie about a girl who has cerebral palsy, is a wheelchair user and is non-verbal. The film will be made for streaming platform Disney+ and will adapt Sharon M. Draper’s best-selling novel Out of My Mind into a screenplay.

The novel follows 12-yearold Melody, a multitalented girl with cerebral palsy, who isn’t always given the same opportunities as her classmates due to being non-verbal and a wheelchair user. After Melody is encouraged to participate in mainstream education, success and challenges await.

After a worldwide search,

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newcomer Phoebe-Rae Taylor has been cast as Melody. Phoebe has cerebral palsy and the production team also includes multiple people from the cerebral palsy and augmentative and alternative communication device communities.

IN JULY, MORE THAN eight million households across the UK will receive the first of two cash payments to ease pressures around the cost of living. The initial instalment of £326 is part of the £650 payment for low-income and vulnerable households which was announced earlier this year. The second instalment is due to arrive this autumn.

The payments will begin from 14 July 2022 for nearly one in four families on means-tested benefits, and nearly one in ten of the population will get a separate £150 disability top-up payment. As the payment date approaches, a petition is calling for more disabled households to receive the full £650 funding.

enable news

News AVIATION REGULATOR THREATENS ACTION OVER FAILING DISABLED PASSENGERS THE UK’S AVIATION REGULATOR has issued a warning to airports across the UK to provide better services for passengers with a disability and those who are less mobile. The Civil Aviation Authority warned that airports will face enforcement action if they continue to let down this community. If failures continue, court action could be brought against airports.

The statement comes after multiple

incidents over recent months including a man who has spinal muscular atrophy being left on a plane at Manchester airport for two hours. The passenger, Daryl Tavernor, then had to call the police to help him get through border control. This is just one of a high number of incidents where disabled passengers have been left to wait hours for the support they need to help them disembark a plane in the UK.

MORE THAN HALF OF DISABLED HOUSEHOLDS PUSHED INTO DEBT NEW RESEARCH FROM DISABILITY charity Sense has revealed that 54 per cent of disabled households in the UK have been pushed into debt due to the rising cost of living. This financial pressure on families has also seen more than a third of people with a disability skipping meals to save money.

Over two thousand people were Nick and Rhia surveyed as part of the research, including disabled adults and households caring for a disabled child or adult. The research is the first of its kind since the UK Government announced its support package for people struggling with rising prices in May 2022: four out of five respondents believe these measures don’t go far enough.

Nick Flaherty, who cares for his 13-year-old daughter Rhia, says: “We were in debt even before prices went up, this is just going to push us further into debt. We were already under water, now we’re drowning.”

The charity is now calling for long-term financial support for disabled people and their families as financial pressures continue to affects people’s physical and mental health.

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Scotland sees rise in disability hate crime charges CHARGES RELATED TO HATE crimes against people with a disability have risen for the fifth year according to new figures from the Crown Office and Procurator Fiscal Service in Scotland. Published in June 2022, the figures show that the number of charges with at least one element of disability hate crime rose from 461 in 2020-21 to 666 in 2021-22. This is a 44 per cent increase since the last report in June 2021. The rise marks the highest number of charges since legislation including disability hate crimes came into place in 2010. The figures also show that court proceedings commenced for 82 per cent of the charges, but no action was taken for two per cent of charges reported in 2021-22.

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Passing the

DOWN SYNDROME BILL

Earlier this year, the Down Syndrome Bill successfully passed its Third Reading in the House of Lords to officially become an Act under law, providing an opportunity to improve the lives of people with Down syndrome across England and Wales

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n the UK, people with Down syndrome are continually misunderstood and mistreated. As recently as last year (2021), unlawful do not resuscitate orders were placed in the files of people who have Down syndrome. Now, a new law has the chance to transform the treatment of this community.

PROCESS

The Down Syndrome Bill was first introduced by Dr Liam Fox MP in June 2021 after he was selected

in a ballot of MPs to introduce a Bill on the subject of his choice. Dr Fox wanted it to go further than previous legislation encompassing people with Down syndrome, identifying their specific needs in all areas of society.

The Bill moved through the legislative process unopposed by any political party, and passed its Third Reading in the House of Lords before being given Royal Assent by the Queen. Having passed this process, the Bill has now become the Down Syndrome Act and is a law which extends to

enable life England and Wales.

Throughout this process, charities and organisations run by and for people with Down syndrome campaigned for change, notably the National Down Syndrome Policy Group (NDSPG).

“Dr Fox was interested in creating something that acknowledged the huge amount of evidence in this area, but also to have that enshrined in law so that governmental bodies would have to take a specific approach,” explains Dr Elizabeth Corcoran, a founding officer of the NDSPG. “When we were in the early stages and it was moving through the readings in parliament, we were excited but we were realistic that it might not make it through.”

The Private Members’ Bill moved through this process quickly, taking less than a year to receive Royal Assent.

Lynn Murray from Don’t Screen Us Out - an organisation made up of more than 17,000 people with Down syndrome and their families - was also involved in campaigning for the Bill to become law and remembers the moment she heard this news.

“I can’t really express how amazed and delighted I am to actually get something concrete over the line for people with Down syndrome,” expresses Lynn who’s daughter Rachel has Down syndrome.

“This policy should ensure that the

The Act will take away barriers, freeing up people with Down syndrome to amaze everyone else bar is set higher, improving the lives of this population and creating more opportunities for them.”

OUTLINE

The main body of the Act will be split into four sections: National Health Service; social care; housing; education and youth offending. Each section will outline what authorities and professionals it will apply to and the functions they must carry out.

“We would like to see experts in these areas come together and use their knowledge to create guidelines informed by real people’s experiences,” highlights Elizabeth. “These guidelines have to extend all the way through their lives, covering everything from pregnancy

PICS: © DAVID PARRY

Steps towards social justice Fionn Crombie Angus, who is 26, is one of five founding officers with Down syndrome at the NDSPG. As part of the group, Fionn was involved in the passing of the Bill into law.

“People with Down syndrome don’t typically have desirable lives.

There’s nothing about having an extra chromosome that necessarily says that should be so – everyone has gifts,” shares Fionn. “This Act could go a long way toward bringing social justice to people with Down syndrome, improving access to appropriate support to live the life each one choses.”

As the Bill passed through the legislative process, Fionn travelled to Westminster five times in the space of six months, giving evidence to the All Party Parliamentary Group on Down Syndrome, meeting with over 100 members of parliament and giving a speech on World Down

Syndrome Day. When he heard that the Bill would become a lawful Act, he started thinking about the next steps.

“My immediate feeling was elation,” reveals Fionn. “But then I thought, I’m happy for the good this will do for people in England - next comes the rest of the UK, Ireland, and the world.”

As a policy group founding officer, Fionn is now inviting any adults with Down syndrome to share their stories and opinions to shape the contents of the Act. “The government needs to make sure their work is accessible to us,” states Fionn. “We’ll even help them with that. Any government communications, on any subject, should be made understandable to all citizens.”

Even though this is a big step towards better inclusion and reducing

care through to end of life guidelines.

“This won’t go against any existing legislation, it will actually sit within that.

We’re not asking for money to be taken away from other budgets or groups, we’re asking for our community’s money to be spent more wisely and based on evidence.”

Now, a consultation stage will inform the contents of each section, gathering information and opinions from people with Down syndrome and their loved ones.

“They now need to consult with the public so that the contents can be guided by that,” emphasises Lynn.

“People with Down syndrome, their families, carers, they all have to be involved so that we can see a real impact moving forward.”

The success of the Act is still to be proven, but the new legislation is a positive step towards creating a better quality of life and care for more than 41,000 people who have Down syndrome in England and Wales.

FOR MORE INFORMATION

To learn more about the Down Syndrome Act and how to contribute evidence during the consultation, visit www.ndspg.org or view the full outline of the Act at legislation.gov.uk

Fionn

stigma, Fionn acknowledges that his and the NDSPG’s work isn’t done.

“It’s a progression: our achievements were easier because of the work of the older generation with Down syndrome and their families, the next generation will dream even bigger,” enthuses Fionn.

“The Act will serve as a big power-up on that journey.

“The Down Syndrome Act won’t change things as much as people will change things. But the Act will take away barriers, freeing up people with Down syndrome to amaze everyone else. I’m really looking forward to that.”

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Debating

INTEGRATED CARE

Over the last year, multiple policy papers and white papers have been published, all aiming to outline the reform of health and social care, but what could these mean for the disability community?

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s papers centred around the reform of health and social care have been published, some of the points in these were welcome, but they have also raised concerns with health and social care bodies who have since campaigned for changes and worked alongside the government to consult on future policy.

The contents of these papers have covered everything from adult social care reform to building back better in the wake of the coronavirus pandemic, but a key focus is health and social care integration. Introduced with the Health and Social Care Integration policy paper and now followed up by the Health and Care Act 2022, integration could bring benefits for the disability community.

INTEGRATION

“We need public teams to work together because if they’re disjointed then it can make it difficult to access services,” highlights Dr Lisa Cameron MP, the chair of the All Party Parliamentary Group (APPG) on

Disability. “If we had integrated services it would mean everyone working together from in-patient care through to the community.”

In the past, the UK has often lacked clear pathways for people going from hospital care back in to the community, but if done successfully, integration could remove this barrier.

“Given so many of us are getting older and now have impairments or health conditions that come with age, it makes so much sense for them to work together and become a joined-up service,” explains Fazilet Hadi, head of policy at Disability Rights UK. “People are often confused about where they go for what services, how they get referred and how they find the support they need. Anything we can do to simplify that for people would be very valuable.”

An integrated health and social care system could bring many benefits, but there are also fears and confusion around what it could mean or how it would be done.

“Health and social care have grown up as very separate services and they

The voices of disabled people have to be at the helm of change

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have completely different cultures within different departments,” offers Fazilet. “Social care is led by local authorities and comes with charges, but the National Health Service (NHS) is free at the point of delivery.”

For the disability community, some of these concerns centre around health care using a medical model, while social care is based on a social model which is focused on empowerment and independence.

“Disabled people should be equal in society and so we need health and social care to be equal partners,” adds Fazilet. “Integration could bring us simpler pathways because you wouldn’t have to share your story or information twice, but we also need it to remove barriers to independence.”

COSTS AND FUNDING

Despite the move towards an integrated system, social care wouldn’t become free at the point of delivery, but the People at the Heart of Care

policy paper did introduce a cap on social care costs in England. This paper revealed the government’s plans to cap the amount someone can spend on adult social care in England at £86,000.

The announcement was welcomed, but concerns remain over whether this will do enough to combat the effect the cost of social care has on disabled people.

“I think everybody has the same feeling that whilst that funding was welcome, it’s not enough,” states Lisa.

“The cap on care costs is not enough to address the current crisis in social care.

“We need to do more, we need to address the technical issues that currently exist in the sector: funding gaps need to be filled.”

Staff retention, pay and workforce problems all have to be resolved before integration could be truly beneficial.

“The integration paper talks about training the workforce together, it talks about leadership and accountability, about being better unified and also the

possibility of pooling budgets, but social care is already completely underfunded and we don’t want to see that medical approach being implemented,” stresses Fazilet.

“The government need to understand that social care is about people living: social care isn’t just being washed and dressed, its about being able to participate in the community.”

Without more permanent funding for the social care sector, the current staffing crisis can’t be addressed, meaning people will continue to miss out on the care they desperately need.

“I think a big part of the problem is operational, everyone is having struggles with staffing but maybe an integrated care system could get those conversations going,” offers Fazilet. “I do sense a willingness among leadership in the NHS and in social care to really put the person at the heart of care, to give them more choice and control, but we need the services to be easily accessible to enable that.”

VOICES

As the UK moves one step closer to an integrated health and social care system where departments are better able to communicate and collaborate, the disability community has to be included in how this takes place.

“There has to be a huge consultation exercise to engage people with disabilities to see what we really need to make this work, it has to be led by service users rather than just the government,” explains Lisa. “We need to include unpaid carers too because they contribute a huge amount to this system.

“In this overhaul the voices of disabled people have to be at the helm of change.”

As the move to a more collaborative health and social care system happens, the UK Government needs to engage with the communities who will be most affected by this change to ensure it creates better outcomes for them in the future.

FOR MORE INFORMATION

To read more about the policy and white papers influencing this change, visit www.gov.uk, or speak to Disability Rights UK (www.disabilityrightsuk.org) if you would like to share your thoughts or opinions on integration.

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CARER EXPERIENCE

The day our world changed Becoming a carer can change your life overnight, presenting new challenges and responsibilities. Nikki became a carer for her mum after she experienced a brain aneurism and now, after her own experience, works to better support unpaid carers in the community

W

e often think of caring as something that happens gradually and over time, it creeps up on us. A loved one’s health may deteriorate almost unnoticed until something happens which makes us take stock. However, for many of us, the caring role appears out of the blue following a stroke or accident.

Here’s my story.

I was living abroad as part of my university course when I got the call from my younger sister: “Mum has had a brain aneurism and is in a coma.”

“A what?” was my baffled reply.

My mum was about 51 at the time. It turns out that Mum had a ruptured blood vessel in her brain, shortly followed by a second one, and was in an induced coma.

The next few hours (and days) were a blur as I scrambled to find a flight home and try to process what was happening.

At the hospital, the consultant called us in to a side room and explained that Mum had not given consent for the aneurisms to be ‘fixed’ but that, as family, the decision lay with us: a terrified 20-year-old and a 16-year-old child. We were told the odds of survival were low, however, there was only one option of course, to go ahead with the operation. Latterly, Mum has made it clear that she resents this decision as her quality of life isn’t what it was.

An unimaginably tense wait followed during the surgery followed by a lengthy stay in intensive care, followed by rehab and finally discharged home with a care package that we still have now. I informed my university that I couldn’t finish my coursework that year and didn’t know if I would be able to return for my final year – they were unsympathetic – so I powered through with my coursework as well as

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visiting Mum in hospital and the rehab unit, and finding a full-time job in order to provide for my sister. I’d never even heard of a power of attorney so couldn’t access Mum’s bank accounts and knew nothing about disability benefits. It was a very steep learning curve and one which we could never have anticipated.

That was about 20 years ago and life has never been the same for any of us. Mum’s health continued to deteriorate with a stroke, mobility issues and mental health issues, which, added to a brain injury, make life tough at times but we have no choice.

What do I know now that I wish I knew then? Always ask for help at the start, don’t try to cope alone. Never be afraid to ask questions. Across the country there are carers support services that can guide and support you in your journey.

It was a very steep learning curve and one which we could never have anticipated

FOR MORE INFORMATION

If you have become a carer, there is support to help you navigate your new role. Reach out to Carers Leeds (www.carersleeds.org.uk), Carers Network (www.carers-network.org.uk), Carers Trust (www.carers.org) or Carers UK (www.carersuk.org) to find out about your rights and the help available.

GIVE TODAY TO PUSH POVERTY AWAY The cost-of-living crisis means that everyone’s feeling the pinch. But people with a learning disability are the hardest hit and many are at breaking point – they must now make impossible choices to get by day-to-day.

Will you make a donation today to help those in crisis? Your gift could help people with a learning disability, their loving families and hard-working carers.

To make a difference today, scan this QR code, go to mencap.org.uk/costofliving or call 020 7696 6007.

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Celebrating

WOMEN IN BUSINESS

Launching your own product or service can be extremely rewarding, but it can take time and perseverance. In this process, having a strong community and an understanding of your audience is essential

Launching Diversability

Shani Dhanda

Speak to people you trust but not only that, speak to the people that your product or service is going to benefit

18

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PIC: © ANDY FALLON

In 2022, Shani Dhanda is a well-known name in the disability community and the world of business, but launching her own company wasn’t always the plan. After struggling to get a job at the age of 16, Shani knew that she didn’t want to rely on other people for opportunities and came up with the idea for Diversability. The platform is a discount app for disabled people and is due to launch later this year.

“It got to the point where I had applied for over 100 jobs disclosing that I had a condition and I didn’t hear anything back, and then I did an experiment where I sent out my application without that and got a job straight away,” reveals Shani. “At 16 I learnt that people were judging my

enable

spotlight ability based on my appearance and the fact that I have a condition.”

Shani made the decision to follow her own path, but it wasn’t simple.

“I’ve got no experience in business, my parents don’t run a business and I didn’t really know what I was doing, but I had an idea,” remembers Shani.

“Being an entrepreneur isn’t for the faint-hearted: it’s difficult living with a condition and managing that and also difficult being an entrepreneur.”

As Shani pitched her idea to different investors over the years, she was often the only woman, disabled person or person of colour in the room. Armed with her experiences, Shani now hopes to highlight the fact that anyone can be an entrepreneur.

“I do think entrepreneurship is shrouded in a lot of mystery and people think that you’ve got to be an Elon Musk or a Jeff Bezos to be an entrepreneur and that’s not the case,” states Shani. “Actually, entrepreneurship is a viable option for many people who want to live life on their terms.

“I’ve put myself in places I never thought I’d be in and I think that’s where you grow as a person, but you’ve got to be willing to do things and make sacrifices in the process.”

After making personal sacrifices and investing her own money in Diversability, Shani was getting closer to launching the company, but when the coronavirus pandemic happened,

Creating the Bug Grip For many entrepreneurs, ideas are born out of barriers they see in society. After Jennifer Lake, who is a disabled mum of three, struggled to steer a shopping trolley and buggy in the supermarket with her first child, she came up with the idea for the Bug Grip.

The Bug Grip is a universal clip which attaches two items together, making them easier to push or use.

This could be a wheelchair and a trolley, a trolley and a pushchair, or even two pushchairs. It aims to make life easier for parents, carers or anyone else while out shopping, but the product is versatile and could be used in other settings, too.

“I wasn’t born with a disability and so I’ve seen the world from both sides and know that this is an issue for disabled parents, but also for any parent because you never have enough hands to do everything,” highlights Jennifer. “It all started from there and it has just gotten bigger and better.”

The road to getting the Bug Grip closer to the market hasn’t been easy, Jennifer first came up with the idea around 20 years ago, but hurdles like

she lost her investors. Since then, Shani has found a new investor and is now ensuring that the app is as accessible as possible before launch.

Ups and downs like this are common for people eager to launch their business, and so Shani would encourage anyone considering the path to find a community, she says: “Speak to people you trust but not only that, speak to the people that your product or service is going to benefit because they’re going to give you the best advice.

“Join communities, join networks, it’s a very lonely place to be so if you’re going to be on this journey then align yourself with other people because you’re going to need them.”

You have to search the market and see if your product is needed

Jennifer Lake

sourcing funding, creating prototypes and obtaining a patent have created delays.

“I know that this needs to be out there to help people whether it is used in settings with disabled people or even for things like DIY or camping,” explains Jennifer. “Things like getting a patent are very expensive and they take a long period of time, so now I’m at the stage where I’m looking to license the product with a bigger company so that we can move it forward.”

Since first coming up with the idea, Jennifer has been recognised by multiple awards which have helped her to advance the product. These include being a shortlisted winner of the Stelios Awards for Disabled

Entrepreneurs in 2019 and a finalist for the 2019 Design Council Spark programme. This year, Jennifer was also included in the Top 100 Women in Engineering list from The Women’s Engineering Society.

For anyone who wants to turn their idea into a business, Jennifer would recommend doing your research to ensure it is something people want and need.

“You have to search the market and see if your product is needed, to find that unique selling point that makes people want your product,” emphasises Jennifer. “If you believe in your product, believe in yourself and you persevere then you can make it happen.”

FOR MORE INFORMATION

Read more about Shani and Jennifer’s products at www.shanidhanda.com and www.buggrip.com

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19

enable voices

In recent years the term inter-abled relationships has grown in popularity online, used to describe a relationship between a disabled person and a non-disabled person. One couple is using social media to share informative videos and answer questions

SHARING OUR

relationship S

ince John and Jade Reynolds’ relationship began in 2013, the couple had never thought about using a particular term to describe their relationship apart from normal. Now, with a five-year-old son and a two-yearold daughter, they are utilising TikTok to give people an insight into their lives and sharing informative videos about being in a so-called inter-abled relationship.

LANGUAGE

In the middle of April 2022, the family had around 800 followers on the social media platform. Fast forward three months and the page has amassed more than 119,000 followers and their videos have received over 4.5 million likes. Jade is a wheelchair user and John is nondisabled, and when the couple joined TikTok they began to see the term interabled relationships commonly used.

“In our lives we don’t necessarily use the term inter-abled relationship, it’s just our relationship, but we just

I’ve often found that disabled people can be desexualised 20 enablemagazine.co.uk

noticed online it was the easiest way to convey to people that John doesn’t have a physical disability and I do,” explains Jade.

Since first sharing an insight into their family online, the couple have received questions about Jade’s disability and their relationship.

“I became paralysed when I was 12 and I’m 32 now, but when I was a teenager, I think it would’ve been really nice to see examples of inter-abled couples or just any couples who were disabled really,” offers Jade. “I think it’s nice for anyone who is disabled, but especially for people who are recently disabled, to show that you can have the same expectations as non-disabled people.”

PERCEPTION

The platform has given John and Jade the opportunity to share their experiences on their own terms.

After receiving comments with these repetitive questions, John decided to open the door to viewers.

“I then said feel free to ask anything,” reveals John. “A lot of the common ones were: How did Jade become disabled? Was Jade pregnant? Did Jade have a natural birth? How did she find pregnancy?

“There are definitely a few questions about our dating life and some sensitive ones around sex and intimacy.”

While working to maintain their

privacy, the couple made the decision to share answers that could help inform people.

“We’re very keen to just normalise it because I’ve often found that disabled people can be desexualised and infantilised in that area,” expresses Jade.

“I feel like there’s definitely a pendulum that swings from being desexualised to it only being discussions about sex.”

Although this incorrect perception exists, they feel the majority of questions come from curiosity rather than a place of malice, and some are from other wheelchair users around pregnancy and birth.

“I’m quite a private person: I’m a youth pastor, I work in secondary schools and we want to be quite real about sex, but also, we respect our own privacy and professionalism,” says John. “There’s an aspect where you want to inform people but you also want to maintain your privacy and not have too much voyeurism.”

While the couple create content on everything from family life and funny stories to trends and viral dances, one of the key points they aim to make is that every disability is different and this is their experience, no one else’s.

FOR MORE INFORMATION

You can watch John and Jade’s videos on TikTok at www.tiktok.com/@johnejreynolds

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STRIVE FOR BETTER.

SAMANTHA RENKE

You Are The Best Thing Since Sliced Bread When did you decide to write your first book?

It’s really always been on the cards for me, but around the first time we went into lockdown Fearne Cotton got in touch with me. She explained she was going to be doing an imprint with Ebury, which basically means she would be releasing books under the Happy Place umbrella. She asked if I would like to write a book and of course I said yes, absolutely.

Last October I went back up north to stay with my family and just write it.

I knew that my deadline was January 7 this year, so I really wrote the whole thing in the space of three months.

Happy Place is all about selfdevelopment and reflecting on what you’ve learned in life, but straight away I said I do not want this to be branded an inspirational book, I had to kind of educate everyone in the team on what inspiration porn was. I was also very adamant that I wanted this book to be very loud and proud about my disability. There was a lot of conversations around how we could stay true to what I wanted to write and say, and I think we’ve succeeded

22 enablemagazine.co.uk

in that and you can hear my voice throughout.

I also wanted to make sure as many people as possible could access the book. Obviously there will be an audiobook and the usual things like that, but even down to the cover.

When I was speaking to the designer we were talking about it having clear text and when I was speaking to the full team at the publishers I made it clear that I wanted the language used inside to be accessible to everyone reading it.

What do you hope people take away from the book?

That disabled people are just people at the end of the day, and I think that comes through really organically. I know disabled people will read it and some people will completely resonate with my experiences and then some people will say you know what, that’s not my journey, but I completely appreciate what she’s talking about.

But this is a book for everyone, not just disabled people.

The inspiration narrative is there constantly and I don’t see myself in

that way: I see myself as a person who wanted to achieve things and found a way to do that, who found a way to be as happy as I could be and have control over my own life.

Disabled people still live with so many barriers and that’s a big part of who I am so I couldn’t not talk about these things, but I also talk about relationships, about challenging conversations and setting boundaries.

I talk about taking opportunities and even about failure. I talk about not feeling like I’m good enough and about the relationship I’ve got with my body, my friends.

I’m also constantly overthinking and I think the message here is if you’re thinking it, you can be sure as hell someone else is thinking the same. I want people to find comfort in the fact that you know there’s no such thing as normal.

It’s kind of a memoir mixed in with advice and self-help. It could be positioned in so many sections because it covers so many things: it could be disability, it could be body positivity, it could be a whole mix of things which is so exciting.

PICS :© NICKY JOHNSTON

In her debut book, You Are The Best Thing Since Sliced Bread, Samantha Renke explores everything from perceptions of disability to her relationship with her body and addresses the every-looming question of ‘am I normal?’. Here, Samantha gives Enable readers a behind the scenes look at creating her memoir and what’s inside

enable

spotlight I wanted this book to be very loud and proud about my disability How will readers see a different side to you in the book?

Normally when I’m working there’s always somebody else’s agenda so you’ve got to really pick what you talk about and cover information and statistics that they want, but when you’re writing a book like this then there’s no one else to consider. It’s quite raw and talks through some of the traumatic things I’ve gone through and even just talks about internalised ableism and my disability in a way that I’ve never really spoken about it before.

I feel like I’ve learned a lot about myself.

It’s strange approaching the process, some days I would think ‘do I really want to expose myself?’, and others I would panic that this would be forever printed in a book, but I stuck at it and I’m so glad that I did. It definitely terrified me at first and I probably had a few sleepless nights, but once I started writing I made peace with it and just kind of unburdened myself from the idea of what other people would say or think. I think that’s why it came out so well.

It’s been therapeutic for me as well because there’s no room for secrets. I talk about my father passing away and I actually interviewed my dad’s best friend and got him to write a little bit about my dad. Even just knowing that information, I got to learn a lot more about my family and myself.

What can Enable readers expect from you next?

I’m still not done yet, I always refer to myself as a chocolate chip cookie that isn’t fully baked. I’m constantly evolving and growing.

There are some things I wasn’t ready to put out into the world yet, maybe if I become a multi-millionaire and no longer have to worry about what people think I’ll do a big tell-all book with all the expletives, but in the meantime, I would love to release a children’s book where I go on adventures with my two cats Lola and Bruno.

FOR MORE INFORMATION

THE BEST THING SINCE SLICED BREAD by Samantha Renke is published by Happy Place Books from Ebury at £16.99

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23

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AUTISM DIAGNOSIS

The waiting game After figures revealed some children are waiting nearly five years for an appointment following an autism referral, there are fresh concerns around the support available for families

I

n April 2022, the Observer newspaper published figures obtained through Freedom of Information requests around wait times on the NHS autism diagnostic pathway. The data showed that some children were waiting almost five years for their first appointment after a referral.

At the time the figures were obtained, 2,835 children with an autism referral under the Coventry and Warwickshire Partnership NHS Trust had waited an average of 88 weeks for a first appointment. The longest wait time was a massive 251 weeks.

Under the Berkshire Healthcare NHS Trust, more than 2,800 children waited an average of 60 weeks, while 2,443 children with attention deficit hyperactivity disorder (ADHD) referrals waited an average of 87 weeks for their first appointment.

The stark figures are no surprise to families who have been through the pathway, or for the organisations which exist to support them. Lynda Maxwell, head of the children and family services team at Autism Together, has worked in the field for more than 30 years and helps support families currently on the pathway or waiting for their first appointment.

WAIT

“It’s a strange one because I know parents who have gone through the process very quickly and whenever you hear of that positive experience then I always think they’re very lucky and fortunate, because most parents don’t have that experience even if it’s with the same local authority,” highlights Lynda. “It’s a lottery really: the referral can be made for speech and language and then they wait months for that initial appointment.

“Even once you’ve had that, you then start a new wait to see a

enablemagazine.co.uk

25

enable life Lynda

paediatrician because they refuse to put children on both waiting lists at the same time.”

There’s no single reason why the wait times for an initial appointment and a final diagnosis are so long: the evidence needed for a referral, staff shortages in the speech and therapy sector and the number of families currently joining the list all contribute to the backlog.

“There’s a shortage of speech and language therapists and I know that paediatricians are doing their best, but there’s more children than ever waiting to be diagnosed,” stresses Lynda.

With three decades of experience behind her, Lynda believes that the diagnostic pathway should take a maximum of 12 months after referral, but there has to be changes in recruitment and funding to enable this.

“Let’s do a massive recruitment drive around getting people into that sector,” offers Lynda. “If you’re going to keep relying on speech and language therapy being the key to then getting an appointment with the paediatrician to then get a diagnosis for autism, then they need to put something in place that helps the current staffing crisis.

“You’ve got specialist teachers going into nurseries, seeing children, making reports, so why can’t we use their reports to support a diagnosis, why do we have to have speech and language because not every child has that language delay.”

SOCIAL INTERACTION

Throughout the last two years children have missed out on vital social interaction which would usually come from baby groups, nursery and school. This could have a detrimental effect on their speech and language development. It could also mean some children who need a referral have been missed because they haven’t had contact with the right professionals.

“At the moment any child with a slight delay is getting referred to speech and language just in case,” offers Lynda. “Some of these children might not have had a delay in normal times, but equally, some autistic children have no language delay but still have to wait for that key appointment.”

26 enablemagazine.co.uk

It’s a really, really hard time for parents at the moment The effect of the pandemic has seen waiting lists grow and left families turning to charities like Autism Together for additional support.

“It’s a really, really hard time for parents at the moment and there needs to be a sensible, objective look at a better way of doing this,” emphasises Lynda. “They need to be listened to, parents have to be listened to.”

IMPACT

Many of the families that Lynda is working with are waiting nine months for their first appointment and are sometimes told to come back in an additional six months at this stage to see if there is any change in their children.

“I’ve known times where parents have actually had an online

consultation which isn’t always ideal, and some have been told to leave it six months and see what happens so they’re left with an even longer wait,” reveals Lynda. “Even when they get the diagnosis it’s not some magic key that opens up all of these amazing services, they are simply not there because there’s not enough funding for them.”

While having a diagnosis doesn’t guarantee any additional help, it can aid children in getting the right support in settings like schools.

“Some nurseries won’t have the right support in place and some schools won’t, that diagnosis ensures that schools and nurseries know what to expect and can make sure it’s in place for that child,” offers Lynda.

If a child is already in a school or nursery that understands autism, they could help gather evidence to be used during the diagnostic pathway. They can also offer support while they wait for these vital appointments.

FOR MORE INFORMATION Find support and information while waiting for an autism diagnosis from Autism Together (www.autismtogether.co.uk) and the National Autistic Society (www.autism.org.uk).

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Growing your

FAMILY

Anyone who wants to and is able to be a parent should have the opportunity to do so, but society’s perceptions of disability and parenting can feel like a barrier to starting your own family

N

ina Tame is a mum of four who has spina bifida and shares her experiences of parenting with a disability with more than 66,000 followers on Instagram. Having experienced being a parent with different levels Nina Tame of mobility, Nina is acutely aware of the perceptions that exist around disability and parenting.

“With my first two kids I didn’t use any kind of mobility aids, then with my third accessibility in society,” emphasises Nina. pregnancy in 2013 my mobility started “My parenting worries are generally the to decline,” shares Nina. “I started to use exact same as they were when I wasn’t a walking stick and progressed on to using a wheelchair: I worry about them crutches, then in my last pregnancy I lost eating their vegetables, doing their my mobility pretty much completely and homework, all of those normal parental when my youngest was about a year old worries that everyone has.”

I started using a wheelchair full time.”

PERCEPTIONS

I just think if somebody wants to be a parent then they should be a parent

28 enablemagazine.co.uk

From seeing people online saying they don’t think disabled people should have children to people assuming Nina isn’t her children’s parent in public, these negative perceptions affected Nina’s own expectations of herself.

“I think a lot of people don’t expect disabled people to be parents, or in the case of a wheelchair user they see you as broken so you couldn’t possibly have a baby,” reveals Nina.

“It was a real struggle and it always worried me, even with the health visitor I worried they would think I wasn’t capable,” adds Nina. “My own ideas have definitely developed since then and it helps that my relationship is really balanced. I’ve realised that everybody needs help with different things, everyone has their strengths and weaknesses.”

While Nina has found her own balance, these feelings of judgement can continue outside of the home, often creating barriers for parents with a disability.

“I’ve been a parent on two legs and now I’m a parent on wheels, and a lot of the issues all come down to a lack of

ACCEPTANCE

When her youngest child was born with a disability, Nina began to embrace her own disability more.

“My journey with accepting my disability took a long time and it probably wasn’t until my disabled son was born and I saw disability was so beautiful on him that it made me completely rethink the way I’ve always thought about it on myself,” shares Nina. “It’s been a real privilege to be able to teach him from a very young age about his body and the way other people are going to question things.”

For any parents with a disability or disabled people who are considering becoming parents, Nina doesn’t want other people’s ideas to hold them back, she says: “There’s the saying it takes a village and I think with the right support people can be parents. It’s really important to remember that children just want to feel secure and loved.

FOR MORE INFORMATION

Keep up to date with Nina on Instagram @nina_tame

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Fighting for

Fibromyalgia recognition

It is estimated that nearly one in 20 people are affected by fibromyalgia in the UK, but few people understand the true impact the condition can have on a person’s daily living and quality of life

F

ibromyalgia is a chronic condition characterised by widespread pain and profound fatigue. This pain is often felt throughout the whole body and fatigue can range from feeling tired to extreme exhaustion and flu-like symptoms.

“It’s often described as a chronic, widespread pain condition but it’s more than that,” offers Des Quinn, chair of Fibromyalgia Action UK (FMA UK).

This pain has to last at least three months in all four quadrants of the body to get a diagnosis, but in reality, it can take as long as two years to receive this.

CHALLENGES

Des, who lives with fibromyalgia, has been chair of the charity for eight years. The organisation provides support and information to people who have the chronic condition.

“One of the challenges that people face with this condition is that once you find out, you’re often left to deal with it through self-management,” highlights Des. “It’s a bit easier nowadays because there is an increased amount of awareness with

30 enablemagazine.co.uk

health professionals, but there has to be more. It affects people in all aspects of their life whether that’s employment or socially, and we need better treatments and research.

“All of that can be done with more awareness.”

Like many other chronic conditions, fibromyalgia is a nonvisible condition. This can lead to misunderstandings around how well someone is, or how they are coping with the challenges of fibromyalgia.

“As happens so often with a number of invisible illnesses, you might see a neighbour or someone you know go to the post office or the shops and assume they’re feeling better, but you don’t know that,” stresses Des. “You can look fine and be feeling even worse and because of that there’s sometimes judgement.

“Getting acceptance and finding good doctors and knowing what you should expect from your doctor is very important.”

enable health

STEPH’S STORY The fight to be heard by doctors is something that mum of two Steph is familiar with. Steph first started to notice flare ups of widespread pain after she had her first baby in 2016. This spread throughout her body as she also began experiencing fatigue and cognitive dysfunction.

“It affected me in my everyday life to the point where I don’t think I had any days where I felt well,” shares Steph. “I’d gone to the doctor and for a while they just prescribed me pain medication, but I kept going back and saying I need to know what this is.

“I did my own research and I stumbled across information on fibromyalgia. I went back to my GP who then referred me to a rheumatologist who confirmed that it was the likely diagnosis.”

At this stage, Steph was referred to a pain clinic and was sent on a fibromyalgia management course, made up of four group sessions with speciality doctors. During this course, they discussed different things that could aid the symptoms of the condition like acupuncture, exercise, hydrotherapy and pain relief.

“That was in 2017 and since then I’ve not really had any more support from them,” reveals Steph.

“I had a really good relationship with my GP and I was able to go to her for support, but now she’s on maternity leave and it feels like I’ve been left by the wayside.”

Steph

KNOWLEDGE

MANAGEMENT

After attending the course, Steph reached out to FMA UK for information on her employment rights, having had long periods of absence which she was reprimanded for. She has been involved with the charity since, helping to raise awareness of the condition and highlight the need for more medical support.

Since then, Steph has had to

self-manage her condition, but when she fell pregnant with her second baby in 2021, she became severely disabled. Steph then started to struggle with her mental health and was referred to a perinatal mental health service.

“There is such little support for disabled parents,” emphasises Steph. “No one helped me physically: I couldn’t walk, I couldn’t drive, I was in a wheelchair. There was nobody to pick my daughter up from school so financially that really crippled us as a family because we had to pay for wraparound care.

“I’ve got quite a good support network but it’s still hard to keep asking for help, it makes me feel like I’m a burden to other people.”

People are still lacking in knowledge of the condition and how it impacts individuals

Steph knows how hard it can be to receive a diagnosis and any follow-up support, and so she would urge anyone with symptoms of fibromyalgia to keep note of how these affect their daily life.

“I think for somebody trying to get diagnosis tracking your symptoms is a really good idea,” offers Steph. “It’s something that I did even for my own personal benefit so that I could see if there was anything triggering my flare ups.

“Things are getting a bit better, but people are still lacking in knowledge of the condition and how it impacts individuals differently.”

Steph would also urge people to treat themselves with compassion: a diagnosis like this can be hard to come to terms with, but it’s important to remember that you’re not alone. Charities and other support organisations can help you fight for support and can aid you in finding a community that understand and empathise with how you feel.

FOR MORE INFORMATION

You can access information and support for fibromyalgia from Fibromyalgia Action UK (www.fmauk.org) or Versus Arthritis (www.versusarthritis.org).

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After a brain injury, someone’s whole world can change, but having a strong community can offer support during rehabilitation and recovery

I

COMMUNITY IN RECOVERY

n February 2019, Rachel began to experience extreme fatigue. Working as a classroom assistant at the time, one day Rachel became so tired that she lost her balance and broke her ankle. After her injury, Rachel began experiencing extreme headaches and was admitted to hospital where she remained in a coma for two weeks and was told she had experienced a brain haemorrhage.

“I didn’t know what had happened until I was conscious and then they told me I’d had a brain haemorrhage,” recalls Rachel.

Rachel spent her time in hospital at The Walton Centre – the hospital has a specialist Brain Injury Rehabilitation Centre which helps people with acquired

brain injuries to rebuild their lives and regain independence. While Rachel was at the centre she had to re-learn how to walk and talk, and was introduced to The Brain Charity who have helped support her through her rehabilitation.

SUPPORT

“They were in the hospital when I was there so I was able to talk to them on the ward,” explains Rachel. “It was essential, absolutely essential, I couldn’t have coped without that.”

The Brain Charity works with people who have more than 600 conditions affecting the brain, spine and nervous system. Their role is to provide practical help, emotional support and social activities to aid people’s daily lives.

“We have staff members who are

based in local hospitals so that the nurses or the consultants can seek out some emotional support for families or some practical support,” offers Nanette Mellor, chief executive at the charity.

“We aim to be there right at the point of crisis because that’s when people’s lives are thrown up into the air.”

Information and advice officers from the charity have a wide-ranging role, providing tailored support to fit what each individual needs after an injury.

“A person waking up from a road traffic accident for example, their first worry could be who is going to pick my children up from school, then that is what our staff will sort out. If they wake up and their first worry is how am I going to pay the rent this week, we will help them find ways to organise

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this,” explains Nanette. “Equally, if they wake up and think ‘I can’t cope with this and I’m not going to be able to go on’, then we are there to support them emotionally.

“It’s finding out what their needs are and then building the support around those needs.”

Rachel

RECOVERY

Consistent and reliable support like this is essential after a brain injury when recovery can feel slow, exhausting or impossible at times. This is especially important during the transition from the recovery ward or rehabilitation centre to a person’s home.

“I’ve had interventions from occupational therapists, physiotherapists and psychologists who came to the house and helped me through things,” says Rachel “It’s really difficult to begin with, I still find it hard because of losing my speech. It’s been a long road.

“I think it’s hard coming to terms with things because it’s a big thing to take in.”

When returning home from the hospital after a brain injury, someone may look the same to the people around them, but be different inside. This can make it hard for a person’s loved ones or social network to fully understand what they are going through and means awareness around the impact of a brain injury is key.

“I think in general people need to be

34 enablemagazine.co.uk

aware that you may look alright, but it’s a hidden disability that you can’t see, it’s still there,” stresses Rachel.

COMMUNITY

A lack of awareness and understanding can often lead to feelings of loneliness during this key stage of recovery.

“We’ve all had a taste of social isolation due to the COVID-19 pandemic, and I think we all know now that social contact with other people is without a doubt the most important thing to us,” states Nanette. “Most of us live for that connection with other people and I think for the people we work with social isolation is a huge issue. We regularly see people’s whole social network fall apart after their injury.”

Finding a community who understands is essential to tackling this.

During her recovery, Rachel became a volunteer befriender with The Brain Charity. This gives her the opportunity to offer support and advice to people who have recently sustained a brain injury from someone who understands what they’re going through.

“I’ve been doing that about 18 months now,” reveals Rachel. “I’m able

I didn’t realise there was any hope but there is to talk to a lot of people who have had a similar experience to me. Me helping them is a big benefit for both them and me.”

Rachel would advise anyone in a similar situation to find support, she says: “Just carry on and reach out because I didn’t realise there was any hope but there is. It helped just having people who knew what I had been through and just knowing the help and support was there.”

FOR MORE INFORMATION

If you are looking for advice and support after a brain injury, reach out to The Brain Charity (www.thebraincharity.org.uk), Headway (www.headway.org.uk) or the Child Brain Injury Trust (www.childbraininjurytrust.org.uk).

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Highlighting

Non-visible disabilities Constantly misunderstood by the public and people in the medical profession, non-visible disabilities can be life-changing and often don’t receive the recognition or support necessary

I

t is estimated that of the 15 million people with a disability, around 80 per cent of these are non-visible. The blanket term encompasses thousands of conditions, illnesses and disabilities, including mental health conditions; autism spectrum disorder; visual impairment; hearing loss; cognitive impairments like dementia; chronic pain and other health conditions like diabetes and incontinence.

ISOLATION

For many people with an non-visible condition, self-advocacy is a way of life, continually fighting to be heard by medical professionals along with employers, education professionals and the general public. In recent years, the introduction of ‘not every disability is visible’ signs near some disabled parking spaces and accessible bathrooms has increased awareness of non-visible disabilities and helped increase understanding from other people in society, but more needs to be done to ensure this continues to rise and filters into all areas of our communities.

The signs, created by Crohn’s and Colitis UK, have been a key player in raising this awareness and other campaigns are helping edge it forward. During May 2021, CAMHS’ group of equality champions set out their intention to raise awareness of invisible disabilities and have shared people’s experiences, articles about nonvisible conditions and information about the need to tackle ableism since this launch.

COMMUNITY

A lack of understanding and empathy from people with no experience of non-visible conditions can lead to feelings of loneliness and isolation, but finding a community who understand what you’re going through can make a big difference and help you feel

36 enablemagazine.co.uk

understood. This can also be a helpful way of finding different support organisations or the best language and evidence to use when speaking to your doctor about a diagnosis and treatment.

Many organisations run their own support groups, online forums, befriending services, or have pages on social media where you can ask questions or just connect with people in a similar situation to you.

Charities and organisations including Crohn’s and Colitis UK (www. crohnsandcolitis.org.uk), Versus Arthritis (www.versusarthritis.org), Chronic Illness Inclusion (www.chronicillnessinclusion.org. uk), and PSC Support (www.pscsupport. org.uk) all provide information, advice and support for people living with a non-visible disability.

The blanket term encompasses thousands of conditions, illnesses and disabilities

REPRESENTATION

How you choose to disclose your disability at work, in education or just during your daily life is up to you – you have no legal obligation to disclose this in a workplace unless you would like reasonable adjustments to help you do your job to the best of your ability – but if you want to, there are tools to aid this. There is a range of products that you can download, request or purchase to explain to people that you have a particular condition; may need extra support in certain situations; need to use an accessible bathroom or require priority seating when using public transport.

The most widely known is the Hidden Disabilities scheme sunflower lanyards which are free to pick up from different locations like supermarkets and train stations, but charities like RNIB (www. rnib.org.uk), the Macular Society (www. macularsociety.org) and the National Autistic Society (www.autism.org.uk) have their own resources.

FOR MORE INFORMATION

If you are looking for support around a non-visible disability, reach out to a disability-specific charity or ask for support from your GP, an occupational therapist or social worker if you have one.

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Destigmatising

Schizophrenia

About one in every 300 people in the world live with schizophrenia, but stigma and misconceptions have led to a need for change to improve quality of life and outcomes for people with the condition

S

chizophrenia affects around 24 million people around the world, but the condition is frequently misunderstood, leading to stigma and negative perceptions. This is something that Hal had to work through after his own diagnosis of schizophrenia.

DIAGNOSIS

“When I was 16 I was taken to hospital because I had quite severe obsessive-compulsive disorder which is now actually quite well controlled, but whilst I was in hospital I began to hear voices which worsened over the next 18 months or so and led to me being sectioned,” shares Hal. “I was diagnosed with paranoid

schizophrenia but I had an incomplete response to medication at first. Since then I’ve gone back on the medication Clozapine and my diagnosis has now changed to treatment-resistant schizophrenia.”

At this time, Hal had to come to terms with his new diagnosis and the treatment of the condition, but now he is more accepting of living with schizophrenia.

“Being diagnosed is scary, it’s really scary, but what has changed my life is I’ve had effective treatment, so the diagnosis doesn’t feel quite as scary anymore,” enthuses Hal. “Pretty much everyone I’ve worked with has been excellent.

“It’s allowed me to be able to go back to work and studying quite

intensely, whereas before I had no motivation so I feel like it’s been the key to getting to education. The medication and the social impact I’ve had from my team has been exceptional.”

STIGMA

Through finding the right treatment, Hal has also been able to better accept the diagnosis and challenge his own negative perceptions.

“At first, I hated it and I was embarrassed and ashamed I suppose,” admits Hal. “What I’ve learned is that it’s nothing to be ashamed of: it’s something that is a medical condition that can be treated, I always think of it a bit like a beast that can be tamed.

“My initial response to being diagnosed was what society almost enforces about the perception of schizophrenia, but when you look at the many people who have good lives and aren’t dangerous, reducing stigma is so important.”

I really do think that society is quite capable of making this change

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Alongside finding medication that works for him, Hal has also felt empowered by the work of different organisations reducing this stigma.

After seeing multiple posts on social media about National Schizophrenia Awareness Day, Hal was able to find information from mental health charity Rethink Mental Illness.

“I have felt tremendously empowered by Rethink Mental Illness, looking at the work they’ve done and information they’ve put up around psychosis awareness,” shares Hal. “They’ve helped me a lot in the fact that I feel a lot more comfortable talking about things. I suppose I was ashamed of the fact that I’m ill and that I’ve got this, but now I know it is treatable.”

The awareness day takes place on 25 July 2022 and is hosted by the charity, helping to shine a light on the challenges faced by people with a diagnosis of schizophrenia and raising the profile of the need for change.

While examining his own biases, Hal is now advocating for greater awareness to help change perceptions of Schizophrenia.

Without this, the treatment of people with the condition in all areas of society will continue to be unjust.

“I think what we need to really do is talk about schizophrenia, all of us, we need education; we need benefits reform; we need early intervention; we need change happening top and bottom,” demands Hal. “People need to listen to those with experience and people need to learn about medications and feel confident taking them, not feel like it’s a shameful thing.

“I think so many patients are sedated instead of treated and the crisis management is so patchy around the country, but I really do think that society is quite capable of making this change.”

AWARENESS

To fully address this stigma and increase awareness of the condition and the support available for people, sharing people’s lived experience is essential.

“That really needs to be shared across as many mediums as possible and people need to understand that stigma needs to be challenged because it isn’t a life sentence,” offers Hal. “If we talked about it and explained that it doesn’t have to be a debilitating illness, then I really feel like it would change people’s perception.”

This shift is happening, but too

slowly to create a more positive environment for people who live with the condition or are currently receiving a diagnosis.

“EastEnders had a storyline about schizophrenia recently and it was really good, really well written and it was a good way to talk about it I think,” expresses Hal. “Things like that really do help, having an open forum is always good and people standing forward to share their experiences and say there’s a life after diagnosis is crucial.

“It’s such a challenging perception to change, but the process humanises all of those with the illness.”

Through events like National Schizophrenia Awareness Day and people like Hal sharing their story, perceptions of schizophrenia are changing, but more has to be done to better support people with the condition and ensure they don’t feel shame after a diagnosis.

FOR MORE INFORMATION

For advice and information about living with mental illness, including schizophrenia, visit www.rethink.org or Living With Schizophrenia UK (www.livingwithschizophreniauk.org).

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39

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Tim Rushby-Smith

Further down the road In his latest column, Tim Rushby-Smith reflects on how young people accept diversity and what his children have learnt from having a parent with a disability But as I watch her accommodate these differences, it has made me think about the way that so many aspects of my disability are a part of both my children’s lives.

ACCEPTANCE

Over the years, they have accommodated my inability to have them ride on my shoulders, to play in the surf or on the dunes, to kick a ball in the park or rescue them from a tree.

They have accepted the times when my chronic pain has flared up and prevented me from fulfilling promised adventures. They have stood quietly supportive and positive on occasions when I have been hospitalised by serious illness, offering unconditional love and ‘get well soon’ drawings (as effective as almost any medical treatment).

PERCEPTION

They have also borne the scrutiny of strangers when we are out together, the stares of unabashed children, as well as the curiosity from other kids at school. And in return?

Well, obviously I am their father.

They have my love, I offer unconditional support, encouragement, sympathy and understanding, laughs, tears; all the things any parent aspires to give their children.

But there is something else, I think.

They are respectful and tolerant of others, not intimidated by difference. In their friends I see a respect for the way that my children accept and assimilate diversity - I sometimes feel a bit like a ‘brand ambassador’. Pleased that in getting to know me, those friends too might have a different perception of disability.

My children’s generation already have a better, more tolerant approach to disability than my generation had when I was their age. If I can help them to appreciate the value in hearing diverse voices, that further adds to the privilege I feel for being a parent.

“

They are respectful and tolerant of others, not intimidated by difference

“

A

s a parent, I have moments of clarity; occasions when the privilege of nurturing the growth of another human being offer powerful insight, a sense of a deeper, more profound truth.

These days, it’s mostly the same profound truth: time is passing ever faster. This pearl of wisdom was most recently revealed by my teaching my daughter to drive. It is a blink of an eye since I was teaching her how to use cutlery or tie her shoe laces. Even less since I taught her not to leave her socks lying around the house – that one is a work in progress.

Driving has its challenges. My car is fitted with hand controls, which can be disabled (ironically), but they are still there. Even when I remove the steering ball from the steering wheel, the bracket remains to interrupt smooth steering, which takes time to perfect.

Follow Tim on social media on Twitter @Trushbys, and on Instagram @trushbys.art

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SUMMER DAYS OUT Getting ready to plan your next adventure this summer? We highlight days out across the UK that have inclusivity at their heart

SCOTLAND Riverside Museum

Riverside Museum

Glasgow www.glasgowlife.org.uk

Opened in 2011, Glasgow’s Riverside Museum is known as the transport museum by locals, filled with cars, trains, buses, bikes and technology collections which have been gathered over centuries. People visiting the museum can learn about the city’s integral role in heavy industries like shipbuilding, engineering and train manufacturing throughout the years in fun and educational ways.

The purpose-built museum houses more than 3,000 objects as well as a historic street scene reminiscent of 1895-1930.

When you visit, you’ll find two level access entrances, lifts and a changing places facility, and you can watch a welcome video with British Sign Language before your trip.

Seagull Trust cruises Falkirk, Highlands, Kirkintilloch, Ratho www.seagulltrust.org.uk

The Seagull Trust run accessible boat trips on canals around Scotland, allowing people with additional needs to explore the country’s waters and wildlife. The trips depart from boat houses and jetties in the Highlands; Kirkintilloch near Glasgow; Ratho near Edinburgh; and Bantaskine Park in Falkirk. All trips with the charitable trust are provided free of charge, but advanced booking is essential as spots are allocated on a first come first serve basis. Tea, coffee and biscuits are also provided on board.

The cruises are aimed towards people who have additional needs, mobility issues and the elderly, with all boats fully accessible for wheelchair users. It is recommended that each disabled person brings two helpers with them on board.

42 enablemagazine.co.uk

WALES

Celtic Quest Coasteering

Pembrokeshire www.celticquestcoasteering.com Whether you’re a keen swimmer or you’ve never spent much time by the sea, these coasteering specialists are on a mission to make the activity accessible for all. With a range of experience ensuring safe but exciting adventures, the team tailor your session to suit your needs and abilities, having previously worked with people who are deaf, blind, hearing impaired, visually impaired, and people who have learning and physical disabilities.

Floating devices are provided so you don’t have to be a strong swimmer to take part in open water

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ENGLAND Marwell Zoo

Winchester www.marwell.org.uk Covering 140 acres, with five adventure playgrounds and hundreds of animals, Marwell zoo is a great day out for the whole family. The zoo is dedicated to being an inclusive space and has a host of measures to ensure it is an accessible and comfortable environment for everyone. Marwell is the first zoo in the UK to become Makaton friendly and all daily talks use Makaton, guests can also request Makaton symbols in Café Graze. A changing places toilet is available and all five toilet blocks also have an accessible cubicle, plus each guest with accessibility needs gets a carer ticket free. The zoo’s website identifies indoor and outdoor quiet spaces which can be used and a mobile hearing loop is available by request.

It is recommended that you spend four hours expoloring the zoo if it’s your first visit and at the moment, all tickets must be pre-booked at least the day before your planned visit.

Marwell Zoo

Museum of Liverpool

Liverpool www.liverpoolmuseums.org.uk Continually voted the most accessible museum in the UK, the Museum of Liverpool is packed with a range of collections focussing on everything from land transport to The Beatles.

Each collection explores a different area of the city’s history, with collections spanning more than

swimming, cliff jumping, exploring caves or discovering the Blue Lagoon in Abereiddy. If you visit at the end of the summer, you might even be lucky enough to meet an Atlantic grey seal on the shore.

Folly Farm

Pembrokeshire www.folly-farm.co.uk With a zoo, barn, fairground and play area, there’s plenty to explore at Folly Farm and something to suit everyone’s interests. You can go and see animals like giraffes, rhinos and donkeys before trying your hand at go-karting or visiting the conservation cinema to watch

10,000 years of Merseyside’s history.

Admissions to the museum are free and accessibility measures include: accessible parking; wheelchairs available to borrow; subtitles or British Sign Language on videos and interactives; a braille guide for blind and visually impaired visitors; tactile objects and braille labels; visual stories to help plan visits; quiet mornings.

an educational video. Visitors with a disability pay the standard admission price at the farm, but this automatically includes an accompanying carer ticket free of charge. Wheelchair and power wheelchairs users will find it easy to get around as most of the 120 acre attraction is accessible with landscaped paths and ramps, with benches added throughout to allow for rests.

The big wheel at the fairground and the land train ride also have wheelchair-friendly carriages.

Visitors can even stay in a wheelchair accessible luxury lodge at the farm’s holiday park if they’re looking for a longer trip.

FOR MORE INFORMATION

Find more accessible days out and get inspired through Visit England (www.visitengland.co.uk), Visit Scotland (www.visitscotland.co.uk) and Visit Wales (www.visitwales.co.uk).

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Meadowsweet Bungalow

Beautifully presented modern self-catering bungalow in Scotland with spectacular views. Fully accessible for wheelchair users, with specialist equipment. Sleeps 5.

Meadowsweet is near Kilmartin Glen, in the Moine Mhor National Nature Reserve.

Heating and linen is provided. Fibre broadband, BT TV and WiFi. • Level drive and ramp • Alerta Low profiling bed • Oxford Mini 140 hoist

• Freeway Tilting Shower Chair • Fully adapted wet room • Wide doors, spacious rooms

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Off-road wheelchair hire www.hoegrangeholidays.co.uk tel: 01629 540262

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Summer gardening Get into gardening this summer to find a new hobby, make the most of the warmer weather and tackle feelings of isolation

T

his summer, it’s time to utilise the better weather and long days to get into a new hobby: gardening. Whether you’ve always been a keen gardener or it’s something that you’ve never tried before, it can be accessible, adaptable and easy.

Even the smallest spaces can become your own mini garden: if you have a green space where you live you could make it your project for the next few months, or you could simply add a few easy-to-maintain house plants to your space.

Gardening comes with a host of benefits, it is an adaptable hobby that almost anyone can try; it gives you an opportunity to learn and improve as you go; you can do it in any space; many people say the practice feels therapeutic. Spending time outdoors is also good for your physical and mental wellbeing as it’s a form of exercise.

SOCIAL

Trying your hand at gardening is a great way to meet new people and form connections. This could be done online or in-person. Social media sites like Facebook (www.facebook.com) have online gardening groups which could be specific to your local area or even have a national reach. In these forums, people ask questions, share tips and discuss their gardening achievements. Gardeners Club (www.gardeners-club.co.uk) has thousands of members and is free to join.

If you would rather meet people face-to-face, look for a local gardening club, community garden or your closest allotment. Your local authority should have a list of allotments and greenspaces in your area, or you can use the Royal Horticultural Society’s search tool (www.rhs.org.uk) to find your closest one.

ADAPTABLE

With a host of different ways to get involved in gardening, it can be an accessible and adaptable hobby even if you’re a beginner. The first step is listing what you can do, like reaching for items or twisting your torso, rather than what you can’t do. The use of adaptive tools and equipment are great ways of creating a positive gardening experience. Raised beds, easy grip handles and gardening stools are all helpful products when planting or maintainting your space.

Look for a local gardening club, community garden or your closest allotment

SUPPORT ON YOUR GARDENING JOURNEY If you’re in need of some encouragement to get started, Thrive can help.

The charity aids people with physical and mental health issues through gardening.

Thrive’s website has a host of resources for people who already garden, those who used to garden and want to start again, and people who need support to get started.

The charity’s information service has turned over 40 years of therapeutic horticultural experience into a highly personalised search feature, so that whatever your disability or needs, you should be able to find a solution.

At the click of a button, you can access videos, practical information and guides to make gardening easier. A seasonal guide gives ideas for gardening activities that can be started in each month of the year and every task can be undertaken regardless of the space you have available.

To explore more practical tips for gardening go to www.thrive.org.uk/enable

FOR MORE INFORMATION

Get advice on how to start gardening from the Gardening for Disabled Trust (www.gardeningfordisabledtrust.org.uk), Thrive (www.thrive.org.uk) and Carry on Gardening (www.carryongardening.org.uk).

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YOUR SUMMER READING LIST

Get ready to relax with a good read this summer

You Are The Best Thing Since Sliced Bread

Four Bad Unicorns

Doddie’s Diary

Our cover star Samantha Renke shares the lessons she has learned and why you should embrace what makes you unique.

Throughout the memoir Samantha encourages readers to stop living by others’ expectations and to embrace their true selves. Samantha tackles the everlooming question of ‘am I normal?’ and discusses everything from self-love and body image to ableism and challenging perceptions of disability.

Perfect for adding conversations on inclusion into the bedtime routine, this children’s book from Rebecca Patterson is informed by her own experience of growing up with a disabled sister. In the story, Frankie and her sister Connie, who is a wheelchair user, are playing with their friends from next door when one takes over the game and Connie’s wheelchair. The book handles the subject of childhood play and disability while teaching kids how to play together in an inclusive way.

Originally released in October 2021, Doddie’s Diary is now available as a paperback with new and updated diary entries. The book explores Doddie’s five-year journey living with MND, sharing the highs, lows and laughter in his life. Since he was diagnosed with MND in 2016, Doddie has raised nearly £10million for MND research through his charity, My Name’5 Doddie Foundation.

The updated book is a testament to Doddie’s refusal to give in, living life with positivity and humour.

Who Is Wellness For?

The Book of Cold Cases

Book Lovers

Have you ever questioned whether a trendy wellness practice really works or where it originated from?

You’re not alone: writer and poet Fariha Róisín explores the appropriation of traditional wellness practices in Who Is Wellness For? The book gives an insight into Fariha’s childhood in Australia as a Bangladeshi Muslim; how traditional customs and practices have been made palatable for the masses; and what inclusive self-care could look like.

This fictional thriller from New York Times bestselling author Simone St. James is perfect for fans of suspenseful novels and lovers of true crime podcasts. Inside, main characters Claire Lake and Shea Collins, who has a true crime website, set out to learn the truth about the seemingly random murder of two men in 1977. With unexpected twists and turns as the two women interview suspect Beth Greer, this thriller will be hard to put down.

With a classic rivals to lovers plot, Book Lovers from author Emily Henry is the perfect holiday read for rom-com fans.

After literary agent Nora Stephens agrees to go on a month-long trip to Sunshine Falls with her little sister Libby, she keeps bumping into her nemesis, book editor Charlie Lastra. As they’re continually thrown together, Nora and Charlie are forced to unravel the stories they’ve written about themselves and get to know each other in the process.

Samantha Renke Non-fiction www.penguin.co.uk

Fariha Róisín Non-fiction www.hachette.co.uk

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Rebecca Patterson Children’s fiction www.andersenpress.co.uk

Simone St. James Fiction www.penguinrandomhouse.com

Doddie Weir Non-fiction www.blackandwhitepublishing.com

Emily Henry Fiction www.penguinrandomhouse.com

We all welcome a little extra assistance now and again, particularly when travelling alone. Thistle Assistance is an initiative to help you feel safer and more comfortable when using public transport.

thistleassistance.com

The Calf Shed A contemporary quiet retreat comprises a spacious open plan living area and kitchen. Luxury accessible double bedroom with electric profiling bed (twin or king) looking out over stunning views. With underfloor heating throughout. A large BBQ patio and garden.

The opening glass facade allows guest to bring the countryside inside whilst living in luxury and enjoying the panoramic views of the historic downlands.

www.marshamcourthotel.co.uk

Gillie Strang - gilliestrang@gmail.com 07941 299 806 www.calfshed.net

Find out everything you need to know about the Motability Scheme, in fully-accessible venues.

Join us at an event near you

Open 9am - 4pm

→ One Big Day, Westpoint, Exeter - Saturday 23 July 2022 → One Big Day, Yorkshire Event Centre, Harrogate - Saturday 13 August 2022 → One Big Day, Royal Highland Centre, Edinburgh - Saturday 17 September 2022

Find out more at motabilityonebigday.co.uk or call 0800 953 7000 Please quote MO1036I To test drive the cars you must bring your full UK driving licence and sign our test drive declaration on the day. Full Terms and Conditions can be found at motabilityonebigday.co.uk. One Big Day is organised and hosted by Motability Operations Limited, which is authorised and regulated by the Financial Conduct Authority.

thediary 27 JULY GUIDE DOGS SUMMER PARTY

Welsh Mountain Zoo, Colwyn Bay www.guidedogs.org.uk This day out is perfect for the whole family as Guide Dogs’ children and young people’s services invite children with a vision impairment and their loved ones to the Welsh Mountain Zoo for a summer event. On arrival, families will be given a time slot to visit an exclusive space where children will get the chance to meet the animals up close. The zoo itself occupies over 37 acres of green landscape in North Wales.

13 AUGUST ONE BIG DAY HARROGATE

Yorkshire Event Centre, Harrogate www.motabilityonebigday.co.uk The regional One Big Day events from the Motability Scheme are back and this summer you can learn more about the Scheme in Harrogate. At the event, visitors can find out everything they need to know about the latest range of products available, as well as having their questions answered by Scheme experts.

20 AUGUST SUPERHERO TRI POWERED BY MARVEL

Dorney Lake, Windsor www.superheroseries.co.uk

Choose from three distances this summer at the Superhero Tri in Windsor. Participants can take on all three stages solo – a swim, cycle and a push or run – share the fun in a relay, or recruit sidekicks to help them complete the course. Everyone taking part will be put in to groups, each with a celebrity team captain to help encourage them along the way.

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Get out and about this summer with our pick of events

JULY 29 JULY LEEDS WATERFRONT FESTIVAL 2022

Leeds Dock, Leeds www.leedsautism.org.uk

Hosting a mix of activities, performances, workshops and arts for all ages, this is the accessible version of the Leeds Waterfront Festival. All events and activities are specially designed to be autism, neurodiverse and learning disability friendly. Visitors can take part in everything from canoeing and a canal theatre walk, to a photography competition and historical reenactments.

AUGUST

19-21 AUGUST JUST SO FESTIVAL

Rode Hall, Cheshire www.justsofestival.org.uk Head on a family adventure this summer at Just So. The festival is packed with art, music, literature, comedy, dance and theatre for families, and is committed to being inclusive and accessible. With a gold award from Attitude is Everything, the festival has free personal assistant tickets; accessible camping; a Mobiloo; charging points for power wheelchairs and more.

21 AUGUST KILTWALK DUNDEE

Dundee www.thekiltwalk.co.uk Have you been looking for a way to fundraise for your favourite charity? The Kiltwalk could be the perfect opportunity. Discover the sites of Dundee as you complete one of three walking distances: the mighty stride which is 25 miles; the big stroll which is 11.3 miles; the wee wander which is between three and six miles. All money raised for your chosen charity will be topped up by 50 per cent by Sir Tom Hunter and The Hunter Foundation.

If you have any events coming up in September or October email us at diary@enablemagazine.co.uk with the details for inclusion in next issue’s diary page. enablemagazine.co.uk

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RECIPE

Mary Berry’s Victoria Sponge Sandwich A note from Mary This classic recipe is such a favourite. It started my love of cooking cakes. For my first job for the Electricity Board, I would visit people in their homes and teach them how to use their ovens by cooking this fabulous cake. The all-in-one method makes it one of the simplest cakes to make. I feel it is the most healing of cakes to make, too. You must be accurate with your weighing, though, as there is no hiding with it – no icing to cover any mistakes! Baking spread should be kept in the fridge until needed. Soft butter could also be used, but we find baking spread gives a lighter rise.

Sponge 225g (8oz) baking spread, straight from the fridge, plus extra for greasing 225g (8oz) caster sugar 4 eggs 225g (8oz) self-raising flour 1 level tsp baking powder Filling and Topping ½ × 370g jar strawberry jam 300ml (½ pint) pouring double cream, whipped A little caster sugar, to sprinkle

STEPS

Preheat the oven to 180°C/160°C fan/Gas 4. Lightly grease two 20cm (8in) deep loosebottomed sandwich tins and line the bases with non-stick baking paper.

Measure the sponge ingredients into a large bowl or freestanding mixer and beat for about 2 minutes with an electric whisk until beautifully smooth and lighter in colour. The time will vary according to the efficiency of the mixer.

Divide the mixture between the tins and level the tops. Bake in the oven for about 25 minutes, or until well risen and golden and the cakes are shrinking away from the sides of the tins. The tops of the cakes should spring back when pressed lightly with a finger.

Leave the cakes to cool in the tins for a few

moments, then run a palette knife around the edge of the tins to free the sides. Turn the cakes out, then peel off the paper and leave to cool completely on a wire rack.

Choose the cake with the best top and spread the underside with jam. Put the other cake top downwards on a serving plate. Spread this cake carefully with the whipped cream. Sit the other cake on top (jam side touching the cream).

Sprinkle with sugar and cut into slices to serve.

Mary’s tips

• Can be made and assembled up to 8 hours ahead.

• Keep cake wrapped in the fridge but serve at room temperature.

• Cooked cakes freeze well.

PICS: © LAURA EDWARDS

SERVES 8 INGREDIENTS

Extracted from Love to Cook by Mary Berry (BBC Books, £26).

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WIN

A MICROSOFT SURFACE LAPTOP 4 WORTH £1280

This issue, we’re giving readers the chance to win a Surface Laptop 4 and a Surface Adaptive Kit from Microsoft

G

et ready to upgrade your tech: we’ve teamed up with Microsoft to give Enable readers the chance to win a Surface Laptop 4 and Surface Adaptive Kit. Worth £1,280, the Surface Laptop 4 has been created with performance and design in mind, with 512GB memory and the perfect balance of immersive audio and long battery life.

Whether you want to get creative with a new app or use your device for gaming, the Surface Laptop 4 is great for multitasking. With Studio Mics and a built-in HD camera, you can make video calls even in low light, and the built-in Dolby Atmos speakers make streaming programmes and movies feel like an immersive cinema experience.

The device has been designed to ensure comfort while typing with a large trackpad, but it becomes even more accessible when using the Surface Adaptive Kit. Created to make it easier to use and navigate your device, the kit includes: 3D bump labels to help you differentiate between and locate keys, ports and more; keycap labels and keycap applicators that help to highlight keys for confident touch interactions; opener support that provides additional leverage and flexibility when starting

up your device; port indicators with matching cable wrap and raised textures to help you confidently locate and use the Surface Laptop 4’s USB-C, USB-A, Surface Connect and headphone jack.

Find out more online about the Surface Laptop 4 at https://aka.ms/SurfaceLaptop4 and the Surface Adaptive Kit at https://aka.ms/SurfaceAdaptiveKitGuide

HOW TO ENTER To be in with the chance of winning this prize, simply send us your name, contact details and where you picked up your copy of Enable to competitions@dcpublishing.co.uk quoting Surface Laptop 4. Or visit the Enable website and enter online at www.enablemagazine.co.uk/surfacelaptop All entries must be received by Monday 29 August 2022. Good luck!

TERMS AND CONDITIONS: All entries must be received by Monday 29 August 2022. The prize is one Microsoft Surface Laptop 4 and a Surface Adaptive Kit which will be sent to the winner by Enable Magazine. The publisher will pick the winner at random. The contents of the prize may differ from the images and descriptions included here. Please include ‘opt out’ in your entry if you do not wish for your data to be shared. The prize in non-transferable, nonrefundable, there is no cash alternative and cannot be sold to another party. One entry per household. The publisher’s decision is final.

52 enablemagazine.co.uk

Innovations In Accessibility

A NEW INNOVATION IN DISABILITY SCOOTER DESIGN The real beauty of the Electrokart Ranger is the ease with which you can take it apart.

No other buggy folds away to be as neat and compact as the Ranger. It dismantles simply, in no time at all, to fit neatly into the boot of most saloons and all hatchbacks.

This off road mobility scooter is rugged built quality, constructed from high quality steel tubing, phosphated and epoxy coated to give longer life and all weather protection.

Adjustable steering column adjusts for comfort and easy, step-on access, with comfortable steel backed, foam filled and weatherproof bucket style seat as standard. With 2 x braked motors for safety.

Always insist on it being a Ricon Lift RANGER with Lithium battery £3,225 HEAVY DUTY RANGER with a lithium battery £3,655 STABILITY GUARANTEED – EVEN ON THE TOUGHEST TERRAIN, YOU STAY STEADY AS A ROCK.

Ask your vehicle converter to only fit a Vapor Ricon Lift – like, for example, the K SERIES. • Automatic folding lift • Unobstructed view for driver and passenger • Easy operation and maintenance • 350KG lift capacity

Call us now on 01509 635 920

T: 01233 666 000 E: sales@electrokart.com www.electrokart.com

MADE IN ENGLAND

Email: sales@vaporricon.co.uk

www.vaporricon.co.uk

Vapor Ricon Europe Ltd. Falcon Works, Meadow Lane, Loughborough, LE11 1HS

Tired of the same old walking stick?

Neo Walk is at the forefront of mobility aid design, empowering you with choice to stand out and not to fit in. With over 200 styles to choose from featuring comfort grips, light up sticks and unique designs, there’s a Neo Walk stick for everyone.

Pick your perfect stick at www.neo-walk.com

PROMOTING

future voices

Young people’s ideas and opinions are essential to forming practices and policy that affect their future.

Throughout the UK, organisations are forming projects to amplify their voices

Learning for Life Young people with additional needs can often learn and absorb information in different ways. Specialist support organisation Learn and Thrive recognised that this could create barriers in education, especially when learning about relationships and sex. Johanna Aiyathurai is part of the organisation which is largely run by parents of children with Down’s syndrome.

“Through looking at the needs of our community, having conversations with teachers and our own input as parents, we were very aware that an area was hugely lacking for our children, resources around the relationships and sex education (RSE) curriculum,” reveals Johanna. “We started looking at

54 enablemagazine.co.uk

developing new resources as part of our Learning for Life project.”

The project, which was made possible by £5,500 in funding from Kent Community Foundation, supports young people from upper primary through to 18-years-old and works with them to create helpful and informative resources. This initial set of resources is made up of 10 videos entitled Growing Up and Keeping Safe, covering topics like We All Need Privacy; It’s My Body; Personal Space; My Body – I Am A Boy and My Body – I Am A Girl.

“Lots of our young people in secondary schools were finding themselves being labelled as having behavioural difficulties and being excluded from school, all because they are exhibiting behaviours that they were never taught aren’t appropriate,” reveals Johanna. “No one had sat down and said ‘these things aren’t ok and that isn’t appropriate touch’.”

The resources are suitable to be used in different settings from schools to support groups or even at home, and all come with additional resources like workbooks and opportunities for reflection on what has been learned.

Young people’s input was integral to the project.

“The whole point of the project is making young people better able to enter adulthood being as independent as they can: it had to suit them so it had to be made with them,” emphasises Johanna.

The first resources are available to access now from Learn and Thrive (www.learnandthrive.org.uk), but this project is ongoing. Next, the team are planning to focus on relationships, puberty and personal safety.

Rights Right Now! Gregor is 18-years-old and was part of Rights Right Now!, a project run

by Together Scotland, the Scottish Commission for people with Learning Disabilities and other organisations, which aimed to support the inclusion of children and young people as Scotland moves to incorporate the United Nations Convention on the Rights of the Child (UNCRC). Gregor, who has Down’s syndrome, likes to spend his free time keeping active through sports like swimming and basketball.

After Gregor was encouraged to take part by Down Syndrome Scotland, he began joining Zoom meetings with other young people involved.

“It was fun and it’s important to me so that all young people have the same chances,” highlights Gregor. “Adults from the Scottish Government came and it was important for them to listen to young people.”

Too often, young disabled people aren’t heard when policies that affect them are being created or

It’s a delight to see new generations coming up that want to challenge the stigma of not just learning disabilities but disability itself

enable life

implemented. Rights Right Now! gave young people from all backgrounds the chance to share their opinions, concerns and hopes for the future.

“All children disabled or otherwise need the same opportunities,” emphasises Gregor. “All of the adults came to listen and learn from hearing our real experiences, it is good for people in government to hear from young people directly.”

Along with getting to influence the implementation of the UNCRC, Gregor was able to connect with other young people and learn new skills.

“It was good to learn how to take part in meetings online, knowing how to take part and listen to other people,” explains Gregor. “It was also good for the other young people at the meetings to include disabled people and take time to listen to them.

Projects like Rights Right Now! are helping to promote inclusion as a common standard in society and opening discussions between young people and those creating the future policies and practices that will have an impact on their care, learning and opportunities.

Find out more about the Rights Right Now! project at www.togetherscotland.org.uk

Youth advisory group Earlier this year (2022), DFN Project Search (www.dfnprojectsearch. org) launched a Youth Advisory Group to encourage inclusivity from UK employers. Harry, who is 20, helped form the board alongside the organisation’s chief executive.

“I live with a learning disability and I also feel that one of my hobbies is getting other young people with a learning disability participating and into work, increasing the employment figure for people with a disability and advocating for those people,” enthuses Harry.

The group was formed to highlight the voices of young people throughout the country, giving them a platform to share their ideas.

“For me personally, it’s a delight to see new generations coming up that want to challenge the stigma of not just learning disabilities but disability itself and what it means to be disabled,” explains Harry. “I think groups like this are really good for two reasons: one, they’re helping make a more equal society; two, they’re hearing from young people directly.

“It is their future we’re talking about so they need to be the main part of that conversation. I think it’s

more important than the people in charge because its these people’s experiences, they have a very unique outlook on life.”

In the future, Harry would like to see more groups like this influence all areas of society, not just employment.

“We need more boards, we need more youth councils, it makes people stop and think because it’s then based on lived experience,” states Harry.

“Their voices need to be heard and the youth advisory board is a place that gets those voices out.

“Young people with a disability are underrepresented in society and stuff like this, hearing lived experiences of people with a disability is so much better than assuming.”

Harry

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enable life

THE RIGHT TO AN

independent vote Thanks to new legislation, polling stations and voting will become more accessible for people who are blind or visually impaired

T

he ability to vote independently and in secret is essential to a democratic society, but for years people have been excluded from this experience due to a lack of policy making polling stations and casting your vote accessible. Now, amendments to the Elections Bill are making elections more inclusive.

AMENDMENTS

Introduced through a private members bill by Lord Chris Holmes, the amendments within the Elections Bill will now pass into law. Throughout the process, Chris worked with charity RNIB who have been campaigning for changes like this for years.

Three main amendments will be implemented, dealing with: the role of the Electoral Commission in accessible voting; the accessibility of polling stations; accessible voting innovation through technology.

“An important clause right at the top of those amendments is the requirement by law for equipment to be provided which enables individuals who are blind or visually impaired to vote independently and in secret,” shares Chris. “That wording is crucial: independently and in secret.

“That is then given even more power because for the first time by law, there is a statutory requirement for the Electoral Commission to produce guidance as to how that has to be delivered.”

IMPORTANCE

There is also a responsibility by law that returning officers, the people in charge of conducting an election in each local authority, have regard to this guidance.

“All of those steps are set out individually in statute, but when put together I hope what they give is a really powerful force to make elections across the UK more accessible, more inclusive,” stresses Chris. “I hope this empowers blind and visually impaired voters, and

56 enablemagazine.co.uk

That wording is crucial: independently and in secret

indeed all voters, to exercise the most fundamental thing that any of us can do in a democracy.”

The Elections Bill passing into law is especially poignant in 2022: it marks 150 years since the Ballot Act was brought into law, requiring parliamentary and local government elections in the UK to be held by secret ballot.

For people who haven’t had this option for the last 15 decades, these changes will have a big impact.

“Up to this point it would have been extraordinarily difficult, if not impossible, to vote independently and in secret,” reveals Chris. “Hopefully a whole raft of people who may have never voted can now have a positive experience.”

WIDER EFFECT

The legislation should have a wider effect, enabling technologies to be

introduced as they progress and continually making the voting process more inclusive.

“It’s a dynamic, real-time process where there has to be continuous improvement and steps to make the poll inclusive,” emphasises Chris. “It needs to ripple out through society so that people who are blind or visually impaired will consider standing as a councillor, as a parliamentary candidate, getting involved in any element of civil society which they choose.”

FOR MORE INFORMATION

Find out more about RNIB’s accessible voting campaigns at www.rnib.org.uk and the process of the amendments being brought into law at www.lordchrisholmes.com

The Motability Scheme enables disabled people to lease a new car, scooter or powered wheelchair without the worry of owning and running one. Parents and carers can drive on behalf of the customer.

The vehicle should be used by, or for the benefit of, the disabled person.

Making life easier for disabled people

“We went on our first family camping trip.

Something we couldn’t have done without the new car.”

Sam, Elisabeth’s mum

Who can join the Motability Scheme?

You may be able to join the Scheme if you receive one of the following: • Higher Rate Mobility Component of Disability Living Allowance (DLA).

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP).

• War Pensioners’ Mobility Supplement (WPMS).

• Armed Forces Independence Payment (AFIP).

What’s included on the Motability Scheme?

Insurance Breakdown assistance Servicing and repairs

How Motability, the Charity can help We can provide charitable grants for: • Car adaptations to help make travelling as comfortable as possible.

• Vehicle Advance Payments for larger, more expensive vehicles.

• Up to 40 hours of driving lessons, to ensure disabled people have access to driving tuition in specially adapted cars as necessary.

To find out more visit motability.org.uk or call 0800 500 3186

Tyres and battery replacement

To find out more about the Motability Scheme visit motability.co.uk or call 0800 093 1000

11782_Motability_Sen_Advert_UPDATE_V1.indd 1

Motability is a Registered Charity in England and Wales (No.299745) and in Scotland (No.SC050642). Motability is authorised and regulated by the Financial Conduct Authority (Reference No.736309). All cars, scooters and powered wheelchairs provided under the Motability Scheme are leased to customers by Motability Operations Ltd, who operate the Scheme on a contract basis for Motability. Motability Operations Ltd is authorised and regulated by the Financial Conduct Authority (Reference No.735390).

19/01/2021 11:29

REVIEW

MG ZS EV

Columnist Alisdair Suttie takes the MG ZS EV for a test drive

INSIDE In the front, the MG ZS EV has a generous door opening and seat that gives a good view in all directions. The steering wheel adjusts for angle and depth, and the driver is treated to a height adjustable seat. Even so, a Kia e-Niro is more comfortable.

However, the MG is very well equipped in all three of its trim levels and the 10.1-inch infotainment screen is standard across the range. It has much sharper, clearer graphics than the old system in the ZS, and it responds much more quickly to inputs. However, it’s a shame that it’s still mounted lower in the dash

58 enablemagazine.co.uk

than most rivals.

The rear seats offer more room than most cars in this sector. There is loads of space for heads, legs and shoulders for adults, and three kids can fit in comfortably.

Round the back, the boot has a sizeable 470-litres of space with the rear seats still in use. A false load floor can be dropped down, or left in place to offer hidden storage. With the floor in its raised position, there’s no lip between sill and floor, making it easier when unloading bulky items.

For bigger cargo, the rear seats split 60-40 and fold to leave a long, almost flat floor with a maximum of 1375-litres of room.

enable motoring

Easy to live with, easy on the wallet, and easy to like

The MG ZS EV is available through Motability starting with no Advance Payment. Find out more at www.motability. co.uk

EQUIPMENT Three trims are available for the MG, each with the standard or longrange battery options. It wants for little thanks to keyless entry and ignition, air conditioning, adaptive cruise control, the 10.1-inch infotainment touchscreen, sat-nav, and a 360-degree parking camera system. Choose the Trophy and you also get a panoramic glass sunroof, rain-sensing wipers, wireless phone charging, and faux leather upholstery with heated front seats.

The top of the line Trophy Connect adds iSmart live services, so you can access traffic information, Amazon Music, and weather reports in real time.

DRIVING You have a choice of two versions of the MG ZS EV. The first is the standard car with a 51kWh battery. It has a driving range of up to 198 miles on a full charge, and it can be fast-charged from flat to 80% power in around 54 minutes using a typical public charge point. Upgrade to the 72kWh Long Range ZS and you can cover up to 273 miles per charge, while usual recharge times are just over an hour from flat to 80%.

Despite more power, the Long Range model is fractionally slower to accelerate than the standard car due to its greater battery weight. However, both feel zippy around town and get up to motorway speed with ease. They are also quiet and keep wind and road noise at a distance.

Regenerative braking helps to recharge

the battery and means you can drive for long periods without using the brakes. This soon becomes second nature and the supple ride quality absorbs bumps very well on all types of road, making the MG one of the most comfortable cars in its class. There’s more body lean in corners than in a Hyundai Tuscon, but the ZS grips well and feels secure.

SUMMARY With little or no PIP Advance Payment, the MG ZS EV is very cheap to run. It’s also comfy, roomy, and well equipped.

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59

Understanding Respectful Motivated Creative Caring YOU’VE GOT THE SKILLS. WE’VE GOT THE OPPORTUNITIES. ALL WE NEED IS YOU.

VOLUNTEER WITH YOUR LOCAL SSAFA TEAM We need your skills at SSAFA, the Armed Forces charity to continue making a lasting difference to the lives of serving personnel, veterans and their families.

Find out more about a volunteering role that will value your talents visit: ssafa.org.uk/volunteer Registered as a charity in England and Wales Number 210760, in Scotland Number SC038056 and in Republic of Ireland Number 20202001. Est. 1885. S604.1220

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SUBSCRIBE TODAY Subscribe to Enable Magazine and be in with the chance of winning a four-night break with Hoe Grange Holidays

E

ach issue of Enable Magazine is bursting with relevant and exclusive content from real life stories and celebrity interviews to advice and spotlight features on the topics that really matter.

Subscribe to Enable by 30 August 2022 to be in with a chance of winning a four-night, midweek break in a luxurious wheelchair accessible log cabin with Hoe Grange Holidays.

Based on a farm in the stunning Peak District countryside, up to four guests can enjoy this prize with extra equipment included such as a mobile hoist, profile bed and shower chair. You could win this relaxing, peaceful break including one day’s free hire of a Boma 7 off-road wheelchair to explore the farm fields and local trails.

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enable life

Product Roundup Helpful products for your home, hygiene and more HOME

FOOD AND DRINK

MERA CARE SHOWER TOILET

THE HYDRANT HYDRATION SYSTEM

Geberit, POA www.geberit-aquaclean.co.uk/care, 01926 516800

Specifically designed to put the user in control, the Mera Care Shower Toilet is smart, stylish and easy to use. Its advanced technology gives users increased bathroom independence. With adaptations available, the toilet will fit different individuals’ needs, leaving users feeling cleaner and fresher with a comfortable, convenient and hygienic bathroom experience.

Hydrate for Health, £14.95 www.hydrateforhealth.co.uk, 0800 292 2382

MOBILITY

HZB-EV12-33EX AGM BATTERY

Easystart Batteries, POA www.easystartbatteries.co.uk, 01536 20 30 30

The HZB-EV12-33EX is a completely sealed, maintenance free AGM battery.

The EX-Range was in development for over five years before its launch and offers an increased capacity by up to 46 per cent compared to standard AGM batteries. The HZB-EV12-33EX, which is exclusive to Haze, offers 41.1Ah in a 33Ah box size, perfect for those who require more power but are limited by space on their scooter or power chair.

SWIMMING

GARDEN

KONFIDENCE AQUABANDS

VEGTRUG HOME FARM KIT

Konfidence, £9.99 www.konfidence.co.uk, 01566 777 887

Robert Dyas, £199.99 www.robertdyas.co.uk, 0333 103 6677

A raised bed can make gardening more accessible for wheelchair users, people who cannot lean or bend for long periods of time, and people with mobility issues who struggle to reach across large spaces. This home farm kit from VegTrug is 140cm high and comes with a greenhouse frame and cover, making it suitable for year-round use.

MOBILITY

THE CENTAUR

Centaur Robotics, POA www.centaurrobotics.com

This self-balancing, two-wheeled power chair is designed for the world you live in. It fits into the space of a dining room chair and spins on a sixpence. A lifting column elevates you to eye level, extending your reach and taking you higher. Beautiful, safe and easy to operate. Reserve your Centaur now.

62 enablemagazine.co.uk

This hydration system comes with a drinking tube and can be hung, hooked or clipped almost anywhere for convenient and hands-free hydration. Fitted with a flexi-grip handle, the bottle is easy to hold and has been created for anyone at risk of dehydration due to a lack of mobility.

Suitable for both children and adults, these headbands act as a splashguard to keep water out of the ear, perfect for people with sensory issues or who are more prone to ear infections. The velcro design can be easily adjusted to fit any head size and each aquaband comes with a set of mouldable silicone ear plugs for extra protection.

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enable sport

THE ROAD TO

Birmingham 2022 This summer, Birmingham will become a hub for sport as the Commonwealth Games takes over the city

EMPOWERING

The world of sport isn’t new to Freya: she has always loved competing, she says: “I always loved sport and never wanted to sit in the classroom, I wanted to be active and had a tonne of energy.”

During her time at school, football and rugby became Freya’s main interests, but when she was 14 she was diagnosed with muscular dystrophy and had to look for new ways to stay active.

64 enablemagazine.co.uk

“I found wheelchair basketball and it was so empowering because that’s such a life-changing moment, to find yourself with a disability and without many role models to look up to,” recalls Freya.

“I didn’t know what was possible until I found wheelchair basketball, I was able to be around people just like me, who were my own age, and I managed to form an incredible friendship group.

It gave me a chance to play sport in the same way I did before disability was a factor.”

CONNECTION

Alongside wheelchair basketball, Freya competes in rugby and ice hockey, but her love of sport has trickled into all areas of her life. With a professional role in events and marketing, Freya has worked on sporting campaigns with major charities and brands like DHL, Panathlon and Formula 1.

“Having a disability and being a female in sport can be quite marginalising, it’s a passion of mine to show what’s possible regardless of gender, religion, disability or sexual orientation,” emphasises Freya.

When a colleague at DHL nominated her to be a Batonbearer, Freya didn’t expect to be chosen.

“I was selected for services to sport and because I have represented my country for basketball, rugby and ice hockey,” explains Freya.

“It was a huge honour for those achievements to be recognised and to be able to bring the Baton through my hometown while I take part.”

For Freya, the Queen’s Baton symbolises the power of connecting communities, and that everyone is a part of the Commonwealth Games.

“To be a tiny piece in that mosaic is incredible,” emphasises Freya.

Freya’s Commonwealth story doesn’t end with

PICS: © COMMONWEALTH GAMES

T

he Commonwealth Games is continually praised as an inclusive event, with disability sport and nondisabled sport included in the same schedule. Taking place every four years, the Games will run from 28 July to 8 August 2022 in Birmingham, but the path to the event doesn’t start there.

In the lead up to every Commonwealth Games, the Queen’s Baton Relay takes place where the Queen’s Baton tours Commonwealth nations and territories around the world.

On 4 July, the Baton arrived back in the UK, embarking on a 25-day tour around the country which will conclude at the Opening Ceremony on 28 July. After being nominated by her colleagues, athlete Freya Levy is taking part as a Batonbearer.

Freya

It’s going to be huge, I get goose bumps just thinking about it her role as a Batonbearer, she has her sights set on a spot on the wheelchair basketball squad this summer. This year is especially significant for Freya: it’s the first year the sport has been included in the Commonwealth schedule.

“It’s going to be huge, I get goose bumps just thinking about it,” shares Freya. “This year is so exciting for me and for the basketball community, I’m really hoping I can get a spot on that squad.”

FOR MORE INFORMATION

Keep up to date with the lead up to the Commonwealth Games at www.birmingham2022.com

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CALLING FOR

cost of living support

As the cost of everyday items and household bills increases, disabled people’s organisations are demanding better support

O

ver the last few months, the cost of living crisis has created new concerns, with interest rates, inflation, fuel and food prices all rising.

This October, the current cap on the price of energy will be reconsidered and is expected to rise again, leading to fresh worries over how households will cover the added cost.

For some people in the disability community, there has been new challenges as they speak out about having to choose between heating and essential machines like ventilators, cutting their food back to one meal a day in order to afford household bills, or using foodbanks for the first time.

COALITION

In response to the ongoing crisis, a number of organisations have teamed up to make the voices of the disabled

community heard. The Disability Poverty Campaign Group (DPCG) has formed with the aim of spotlighting the impact that the increasing cost of living is having on disabled people’s survival.

Disability Rights UK, Inclusion London and Inclusion Barnet make up the steering group behind the DPCG but organisations across the UK are being invited to join and help make an impact.

The coalition hopes to address the rising cost of food and fuel prices which are putting more people with a disability into poverty, as well as the lack of adequate benefits increases to counteract this. For the group, this issue goes back further than the current cost of living crisis: it has culminated over years of budget cuts; changes to state benefits; cuts to the funding received by essential services in local authorities; barriers to employment and education and a widening disability pay gap.

The current level of benefits and support is under fire by the coalition and other organisations. Currently, benefits provided by the government don’t rise in line with inflation and it is estimated that if extra costs benefits like personal independence payment are disregarded, 38 per cent of workingage disabled adults are living in poverty.

The coalition is encouraging DPOs and other charities from across the UK to join the campaign group and make their voices heard as a collective.

FUND

During September 2021 the UK Government announced a new fund, aiming to help vulnerable households in England with essential costs during the winter. The Household Support Fund was created to help families with children, pensioners and any other households that local authorities feel need support. Devolved nations were also allocated funding to help local authorities support their communities during this time.

The fund was extended by six

Disabled people’s organisations are campaigning for more support and financial aid during the cost of living crisis

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enable finance

months at the end of March 2022 and was doubled to £1 billion. So far, the funding has supported households with food, clothing, energy and water costs, and this extension will continue that support into the autumn. While the additional funding is welcome, it is currently not expected to continue into winter 2022 when the cost of living could reach an all-time high. Alongside this, a support package was announced during May 2022 with measures specific to the disability community.

The funding will see all households in the UK receive a £400 grant for energy bills; a one-off disability cost of living payment of £150 for people on certain benefits; a one-off £650 payment for some vulnerable people; an extra, oneoff, Winter Fuel Payment of £300 for pensioners.

To find out what additional funding you will receive, visit www.gov.uk

EXPERIENCE

When you are already concerned about the cost of living and there seems to be little support available, sharing your story may be the last thing on your

mind, but if you or a loved one are able to do this it could help create change.

If you are able to, you could share your experiences with people in your local authority or the UK government in the hopes of positively influencing policy and the support which is currently available. You could do this by writing a letter to or calling your local MP, or emailing the Department for Work and Pensions.

Speaking with your local MP or your local authority might also highlight support in your area that you weren’t previously aware of. Many disabled people’s organisations (DPOs) are campaigning for more support and financial aid during the cost of living crisis. As well as offering advice on the topic, you could work with them to highlight the impact these issues are having on the disability community.

Often, DPOs connect people with media outlets to put their experiences in the spotlight in hopes of gaining the attention of the government and other agencies that could change what is currently on offer. If this support doesn’t improve soon, many people

will be left with crippling debt or even tougher choices in their daily life.

RESOURCES

If you are unsure about the support you are entitled to, or you are struggling with the cost of living and need advice, different organisations run services that could help. The Scope Disability Energy Support service (www.scope.org.uk) allows you to make an appointment with an expert adviser who can discuss what’s available and ways you can save on your household bills.

Debt and money charities like StepChange (www.stepchange.org, 0800 138 1111), Money Helper (www. moneyhelper.org.uk, 0800 138 7777) and Turn2us (www.turn2us.org.uk, 0808 802 2000) all offer impartial information and advice around finances and the best places to find additional support.

FOR MORE INFORMATION For advice around money and budgeting, visit www.moneyhelper.org.uk or www.moneysavingexpert.com

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enable finance

The disability pay gap BREAKING THE SILENCE

Businesswoman and founder of The Valuable 500, the world’s largest CEO collective for disability inclusion, Caroline Casey, shares her thoughts and concerns around the current disability pay gap

T

he news that the disability pay gap widened to nearly 15 per cent throughout 2021 serves as yet another example of the way in which disabled workers are consistently overlooked and underserved. The Office for National Statistics (ONS) has revealed that disabled employees are earning, on average, almost £2 per hour Caroline less than their non-disabled colleagues. The report details that disabled employees with a mental impairment had the largest pay gap at 18.6 per cent, whilst those with a physical impairment had a pay gap of 9.7 per cent.

DISCRIMINATION

With the UK’s disabled population currently estimated at 14.1 million people, this demographic is by no means a silent minority. Despite this, the ONS findings add to the growing list of discriminations that the disabled community routinely face: from disproportionate redundancy rates to

higher levels of long-term unemployment, the pandemic has brutally exposed the persistent belief that disabled lives are less valuable.

Understandably, a baseline needs to be established in order to monitor progression and exploring the disability pay gap is a good place to start. However, if there is not a thorough regulatory body in place to examine the data – just how reliable are the findings?

In order to build an accurate depiction of the disability pay gap companies need to know the number of disabled employees they have. With droves of people choosing not to self-identify or disclose their disability, these findings need to be further examined.

SILENCE

For far too long there has been silence at C-Suite level on the topic of disability. A

fact made even more apparent by the Disability 100 Report which surveyed the FTSE 100 to capture an accurate depiction of disability representation across some of the most influential companies in the UK. The results revealed that no executives or senior managers have disclosed a disability. With over 1.3 billion people worldwide living with some form of disability it is not acceptable for CEOs to ignore 20 per cent of the population. By breaking the silence on disability inclusion, businesses can fundamentally transform the negative narrative from the top.

Leaders make choices and choices create culture. Leaders need to authentically share their experiences of disability and actively encourage their employees to do the same without fear of negative repercussions. This would pave the way for greater transparency in our workplaces. Cultivating positive foundations that would support self ID projects and enriching environments in which employees feel comfortable talking about disability.

Ultimately, we need to move away from the medical model of disability as disabled people have proven, time and time again that we can and do add value. This isn’t merely a business case on the merits of capitalising on disabled talent – it is a human case.

Only by putting disabled staff and consumers at the heart of business strategies will companies re-write the cultural narrative necessary to reverse the disability pay gap, embrace intersectionality and gage the extent to which it is reflected within business.

FOR MORE INFORMATION

Learn more about The Valuable 500 and the organisation’s work at www.thevaluable500.com

68 enablemagazine.co.uk

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Celebrating difference since 1844 Co-op has a long history supporting equality, equity and solidarity with the disabled community. Today we’re committed to offering disabled colleagues opportunities to build a career in our unique organisation.

Jade – Customer Team Leader My manager looks past my wheelchair to see me, my skills and my potential. Thanks to adaptations made in-store and the support from my manager, I’ve thrived in my role and achieved a promotion, all while studying for my degree at the same time!

Ellen – Customer Team Member I’m deaf, and I wear two hearing aids at work.

Due to my disability, I often struggle with low confidence. However, my colleagues and manager have been fantastic, and the Co-op is really supportive.

Paul – Software Engineer My ADHD means I need reasonable adjustments to do my job to the best of my ability. Thankfully Co-op puts its values at the heart of what it does, and this includes taking the issues disabled people face seriously.

Find out more about working at Co-op and our commitments to diversity and inclusion by visiting jobs.coop.co.uk

OTH_COP65988_EnableMagazineAd_A4_523292.indd 1

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enable employment

Representing colleagues’ interests at Co-op As an inclusive employer, Co-op is dedicated to creating the best working environment for new and existing colleagues

REPRESENT Dedicated to creating accepting and inclusive workplaces, Co-op’s Represent network was created by and for colleagues in the disability community. Represent is open to all Co-op colleagues, whether they have a disability themselves, are a parent or carer of someone with a disability, or consider themselves an ally. Founded in 2020, the network was created after a group of five disabled colleagues decided to meet up for coffee and share their experiences. It’s now grown to include more than 550 people and to influence the way in which Co-op functions, from the support centre right through to food stores and operational roles.

Using Co-op’s internal social media, Represent is amplifying the voice of the disability community by raising awareness, holding events and working collaboratively with business leaders to make Co-op an even better place to work for people from all backgrounds.

INFLUENCING CHANGE Since its inception, the Represent network has helped to improve disability inclusion in all areas, from the accessibility of technology to

improving standards and practices across the organisation. Co-op has always strived to go beyond the basic requirement when considering equality, diversity and inclusion. Represent has worked collaboratively with the Co-op inclusion team to make sure changes are informed by real people’s needs and experiences.

Currently, the network is cocreating training with Co-op’s learning and development team which will better equip managers to support disabled colleagues, ultimately creating a better colleague experience.

Natalie Clegg is the chair of the Represent network at Co-op, she says: “Its been amazing to see these voices in the disabled community come together across the organisation to help develop our disability inclusion strategy.

“We’re working to improve our accessibility in technology and standards across all of our systems, and people who are part of Represent have been a huge part of that. It stretches further than our colleagues, this is making a difference for our customers too.”

Natalie Clegg

The organisation has always strived to go beyond the basic requirement IMPACT Represent is an internal Co-op network, but its impact is reaching people outside the organisation.

Co-op is starting to work with the RNIB to look at opportunities for inclusivity in stores. They’re also currently testing accessible payment kiosks which will create a more inclusive experience for wheelchair users.

By utilising disabled people’s voices to bring about change, Co-op strives to be a great place to work for colleagues with a disability, putting inclusion at the heart of everything they do.

FOR MORE INFORMATION

Find out about career opportunities with Co-op at jobs.coop.co.uk/diversity-inclusion

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enable education

TIME TO

UPSKILL

ONLINE Short, online courses are a great way to gain new skills. These provide the freedom to pick the topic you want, learn at your own pace and at a time that suits you.

Services like FutureLearn (www.futurelearn.com), OpenLearn (www.open.edu/ openlearn), LinkedIn Learning (www.linkedin.com) and Coursera (www.coursera.org) provide a wide range of courses that take anything from a few days to months or years to complete.

You can also access short video tutorials on everything from email marketing to social media through Business Gateway (www.bgateway.com).

You don’t need experience in higher education, online courses or workplace development to upskill

72 enablemagazine.co.uk

Gaining new skills can help you progress in your career, find a new job or expand your knowledge on an area you are interested in

AT WORK If you are currently in employment and want to move up the ranks in the future, there are different ways you can gain the skills necessary to do this. Depending on the industry you work in, there could be topic-specific CPD courses to help you advance your knowledge. Asking a colleague who has more experience, or is currently in a role you are aiming for in the future, to shadow them for a few hours or days can teach you new things and provides an opportunity to ask questions.

Setting up a meeting with your line manager is a great way to show your enthusiasm and ask about the different ways you can upskill in your current workplace. They might even be able to suggest different courses, books or other information for you to focus your studies on. Some larger companies have their own skills framework to help you progress in your role: if you don’t already know about this ask your line manager or human resources department.

IN THE COMMUNITY You don’t need experience in higher education, online courses or workplace development to upskill: there’s plenty of ways to do this in the community with organisations you are aware of and ones you are still to learn about. Volunteering your time to help in your local community, virtually or nationally will see you gain a host of transferable skills that can benefit you in your future.

If you have access to the internet, you can browse what volunteering roles are currently available from organisations like Volunteering Matters (www.volunteeringmatters.org.uk), NCVO (www.ncvo.org.uk), Reach Volunteering (www.reachuk.org) and the Royal Voluntary Service (www. royalvoluntaryservice.org.uk). If you

are already in touch with a disabilityspecific charity, you could enquire about opportunities to volunteer with their members or in your local charity shop.

Mencap (www.mencap.org.uk) have an easy read guide to volunteering with the charity which answers common questions.

Calling local organisations can help you find a range of opportunities. Your carer, personal assistant or a loved one could help you with this task.

FOR MORE INFORMATION

Get further advice on upskilling from My World of Work (www.myworldofwork.co.uk), the National Careers Service (nationalcareersservice.gov.uk) and Prospects (www.prospects.ac.uk).

Embrace your ambition

This is your chance to begin a career that drives awareness of challenges as well as an individual’s true abilities.

Visit our careers website to discover more.

careers.nationalgrid.com

Making your business idea a reality From free online courses to dedicated training days and degrees, there’s a whole host of support available to help entrepreneurs turn their business dreams into a reality

F

or young disabled people, some programmes offer specialist support, helping them to build the right network and overcome barriers in society that would otherwise prevent them from getting their idea off the ground.

The Princes Trust have helped more than 90,000 young people start their own business and the Enterprise Programme has been a big part of this.

The programme helps young people from all backgrounds become the best entrepreneur they can be with training; mentoring support; funding; resources.

Enterprise takes young people who have a business idea through four stages, starting with an information session, then a workshop to meet like-minded people and a business adviser. Young people then have a chance to build their business with support from a mentor – this stage includes applying for any funding like loans – and finally getting to launch the business.

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JACK Jack, who is 24 and has cerebral palsy, is combining his love of cars with a talent for art to build his own business and dreams of one day owning his own garage. Jack wanted to follow this path after experiencing bullying in school and college, and facing barriers to progression in college where he was studying to be a mechanic. His business idea, Salvaged Metal Art, recycles used car parts and makes them into bespoke

The business came out of the rejection I got in school and college

enable employment gifts from wine racks to lamps and pieces of art.

What inspired you to start your own business?

My uncle had been a mechanic for years and would take time to teach me how to do things, he taught me how to weld and since then I started welding scrap metal and making things – that’s how the business idea came about. The only way I can describe it is the business came out of the rejection I got in school and college.

After leaving college I started to attend a small group called Street League which centred around football which I love, but it also helps you build up confidence.

How did you use your network to develop your idea?

I told the people at Street League my idea and they said ‘we’ve got a contact who can help’. They introduced me to the Princes Trust and my whole life has honestly just changed for the better since I went to Street League and got to meet the right people. My brother has been really supportive of me and my idea and he took me to a lot of networking events. Through one of these I got connected to Arnold Clark and now I have a really good contact there who sorts bits out for me. I’ve also got a supplier of parts down the road from me and I’ve got one of my friends as a supplier who gives me old nails and other bits to work with.

How has the additional support from organisations like the Princes Trust helped your business idea grow?

I couldn’t have built the network I have without them. They helped me build a foundation for my business and I’ve made lifelong friends, I’m also an ambassador for them now. I’m still trying to build a customer base and get my products out there before I properly launch: it’s really still a hobby right now that will hopefully develop over the next few years.

What advice do you have for other young disabled people with a business idea?

If people have a disability or not just go for it, there’s nothing to lose and there’s always going to be another opportunity. I saw something recently that said if someone says no it doesn’t mean no, it means its time for your next opportunity so I like to think that’s what it stands for now.

LAURA Laura is 31 and lives with Cystic Fibrosis. She runs fashion company Careaux (www.careaux.com) with her younger sister Rachel, selling unique dresses that come in two parts and are joined with a zip to give more flexibility if the sizing you require fluctuates due to a condition or another reason. The sisters strive to have a positive social impact as well as developing their business which launched in 2019.

Did you always want to run your own business?

When I was younger I always wanted to train to be a vet because I loved animals, then as I got older and did my A-levels I decided to go to university to study history. The idea to start a business actually came from my sister Rachel: she was only 14 when she came up with the idea for Careaux. I had never thought about going into fashion or business at all but after that we wanted to make it happen.

How did you take the idea and make it into a successful business?

We spent a few years Googling, researching and just deciding how to approach it. In 2016 we decided it was what we really needed to do then in 2018 we found support with the Princes Trust.

In what ways did your Cystic Fibrosis diagnosis influence the idea?

My rib cage is bigger than Rachel’s and most other people’s and my weight fluctuates a lot because of my medication. I could never really find clothes that fitted me, I would have to go for a different style of top maybe or keep switching between sizing.

Nothing was really accommodating and that’s when Rachel had the idea for our dresses. She loves math and problem solving so that really brought the dresses to life.

What support were you given on the Enterprise Programme to help launch your business?

I think it was within an hour of getting in touch with them that I was booked on to the Enterprise course. We developed a business plan and got answers to any questions we had

There’s a lesson every single day but mostly to ask for help because we had no idea how to run a business day to day. We felt this sense of connection and that’s really opened up networks of people that we probably wouldn’t have met.

What is the biggest lesson you have learned since launching the business?

I feel like there’s a lesson every single day but mostly to ask for help, I think having the ability to do that gives you the confidence to make decisions. On a personal level I have built a lot of trust in people and myself: I believe in myself and now feel confident in everything I do.

FOR MORE INFORMATION

Find out more about the Enterprise Programme on the Princes Trust website (www.princes-trust.org.uk) or receive business advice from Business Gateway (www.bgateway.com).

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Find your perfect place.

As a leading recruitment outsourcing provider, Guidant Global can offer you direct and exclusive access to great jobs with some of the UK’s top employers.

We’re also a Disability Confident Leader, and our award-winning approach to disability inclusion is building careers and changing lives.

criteria required for the job) and please don’t forget to tell us about any adjustments you might need during the recruitment process.

It goes without saying, we welcome applications from people with disabilities! In fact, if you have a disability, we’ll guarantee you an interview for any internal role (assuming you meet the minimum

If you would like to find out more about inclusive careers at Guidant Global, or search for roles with our amazing clients, please visit our website. jobs.guidantgroup.com

20220 Guidant Global Enable Ad AW.indd 1

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enable employment

EMPLOYMENT Q&A

Finding inclusive employers In her column Jane Hatton, founder of Evenbreak, answers your employment questions

Q

I’m fed up of applying for jobs and being rejected as soon as they find out I’m disabled, even with companies who say they are ‘equal opportunities employers’. How can I find employers who genuinely want to employ disabled people?

A

It’s difficult, isn’t it? Most organisations describe themselves as inclusive or as equal opportunities employers these days, but we know that many aren’t, particularly when it comes to disability.

There is no guaranteed way of knowing if an organisation is genuinely inclusive and accessible to disabled

candidates, but there are often clues.

Have a look on their website. Do they have a ‘meet the team’ page? If so, how diverse is their workforce? Are there visibly disabled people represented, or people who include information about invisible conditions in their description?

Do they have a page or section on diversity and inclusion? Do they make it easy to request adjustments for the recruitment process? These are all indications that it might be an inclusive workplace.

Do their job adverts have a positive and prominent inclusion statement on them (as opposed to the standard ‘we welcome applicants from blah blah blah’ at the bottom of each advert)? Do they include how to request adjustments for the recruitment process, in a way that is easy to access? With a named person’s contact details (email and phone number)?

Where do they advertise their vacancies? Just the usual places, or do they advertise on specialist disability job boards like Evenbreak, or in disability journals? If they pay to advertise in media specifically targeted at disabled people, like Enable Magazine, that’s a good indication they want to attract disabled candidates.

They indicate that diversity and disability are on their agenda Do they have any relevant awards or accreditations? Have they won any diversity or disability awards, or signed up to the Disability Confident scheme? None of these are guarantees, of course, but at least they indicate that diversity and disability are on their agenda.

The only failsafe way to know is if you know disabled people who already work there who can tell you what honestly happens behind all the public policies and statements.

You can look on Evenbreak for jobs with employers who are actively trying to attract disabled candidates.

If you require personalised career support, please see our Career Hive (hive.evenbreak.co.uk).

YOUR QUESTIONS, ANSWERED

Jane Hatton

Evenbreak (www.evenbreak. co.uk) is a social enterprise run by and for disabled people, with a specialist job board and a career hive (hive.evenbreak.co.uk) where you can receive career advice and personalised support.

In this series, Jane Hatton, founder of Evenbreak, answers your employment-related questions.

If you have a question for Jane to answer send it to editor@dcpublishing.co.uk

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We’ve equality at our core.

Support to work in the way that’s right for you

We’ve been named as a disability confident employer by Jobcentre Plus and have a positive attitude towards job applications from disabled people.

Flexible working

As we progress, we’ll continue to improve the way that we support our staff, customers, and stakeholders, regardless of disability, gender, ethnicity, age, religion, or sexual orientation.

Work that makes a difference

Our Equality, Diversity, and Inclusion strategy is a priority at RoS. It’s not a one off or an event, it is an ongoing process, and we will work for our colleagues to feel safe, supported and included at work.

We want to be an employer of choice, attracting and retaining the best and widest possible pool of talent.

www.audit-scotland.gov.uk/careers

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Promoting

INCLUSION AT WORK

Registers of Scotland is responsible for keeping public registers of land, property and other legal documents in Scotland, but the organisation also has a strong commitment to diversity and inclusion

J

ulia is a legal settler at Registers of Scotland (RoS), working on the registration of properties.

When Julia interviewed for her position at RoS, she thought of herself as neurotypical, but in between her interview and when she started her job, Julia received an autism diagnosis.

“As much as this diagnosis help me to understand myself and get closure for any issues I had in my previous life, it also changed my perception of my future,” shares Julia. “I felt really apprehensive starting a new job because I thought of myself as a neurotypical person and then found out I’m not, and I wasn’t sure whether other people’s perceptions of me were accurate anymore.”

When Julia started her new position at RoS, she was met with acceptance and support.

“Everyone across RoS was very helpful and very friendly,” highlights Julia. “It was very easy to disclose and there has been no judgment.

“I’ve been encouraged to take the best approach for me, it’s simple things like being able to request a window seat because it helps me concentrate being further away from the main traffic of the office. Colleagues and friends at RoS were brilliant as well: they don’t make any assumptions and instead they ask questions which doesn’t sound like much, but it’s very helpful in the long run.”

POSITIVE

After having such a positive experience, Julia wanted to make a difference for other people within the organisation.

“I learned that there are colleague networks at RoS and that’s something I’ve never seen before in my previous workplaces,” reveals Julia. “I thought it would be great if something like that could exist for neurodivergent people, it would save hours of anxiety just knowing there was people you could talk to who had similar experiences.”

With support from colleagues, Julia was able to set up the network quickly and has now published articles on the RoS internal website, bringing together a group of interesting and diverse people.

COMMITMENT

For Julia, having the network has created an even better experience in the workplace, but this commitment to inclusion and equality doesn’t stop with the RoS employee networks.

“What I like about RoS is that every time something is mentioned, that change is implemented,” explains Julia. “Every colleague is included in discussions about equality and diversity which is how it should be because equality shouldn’t be selective.”

This dedication to inclusion is driven by senior management who are always open to new ideas, Julia says: “I have worked in quite a few organisations and it’s one of the first things I noticed, it’s really genuine and the people driving that forward is our management.

“It’s very much being driven by leaders in the organisation which is great, we are actually putting a lot of heart and soul into this and trying to create actual solutions.”

They don’t make any assumptions and instead they ask questions

FOR MORE INFORMATION

Find out about career opportunities with RoS at www.ros.gov.uk

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WORKING WITH AN OCCUPATIONAL THERAPIST what to expect Occupational therapists aid health and social care in a wide range of ways. Here, OT Jessie Basra takes us behind the scenes of what people can expect and the different places OTs work in the community

D

uring her career as an occupational therapist (OT), Jessie Basra has worked in many different sectors, from starting her career in hospitals to working in adult social care and now as the clinical operations manager at independent occupational therapy company, The OT Practice.

What does your current role as clinical operations manager involve?

My role involves ensuring all clients of The OT Practice receive an excellent level of service. I look after many projects for a variety of organisations including charities, and local authorities to reduce their waiting lists for people awaiting an OT assessment. I also offer clinical support to OTs working on the projects.

In what areas do OTs aid people with a disability in their daily life?

OTs work in many different settings.

Some examples may include: schools, hospitals, adult social care, charities, in conjunction with ambulance services and GP practices.

What can people expect from an OT during a needs assessment?

It may start with a telephone call to clarify on why a referral was initially made. This may then lead to a face-to-face assessment.

They will gather further information to understand what the client’s goals are and establish what is important to them.

They may then complete a physical assessment which may include how the person gets on and off the toilet, bed and chair; how the person gets into their shower or bath; how they make their meals and other things. They may also review how they walk and get up and down the stairs. This tends to be a holistic review to establish how a person is doing in their daily activities. The needs assessment can review the need for equipment that could assist with a specific task such as a bath board to help someone get in and out of their bath independently.

Are there any areas that OTs work in that people may not expect?

As occupational therapy is so diverse there are a lot of different settings they can work within. OTs tend to be dual trained in mental and physical health, they then choose which pathway they take. They can therefore work in prisons, schools, charity’s and even with technology company’s creating assistive technology.

Jessie Basra

OTs tend to be dual trained in mental and physical health

FOR MORE INFORMATION

Find out more about the ways OTs help support people in the community from The OT Practice (www.theotpractice.com) or from the Royal College of Occupational Therapists (www.rcot.co.uk).

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YOUNG CARERS’ LIVES IN FOCUS

Caiden and Feebee

This year, Action for Children and the Royal Photographic Society have teamed up to highlight what brings young carers happiness in their daily lives

Y

oung carers around the UK are being invited to take part in a new project: A Life in Focus. The photography project is a collaboration between the Royal Photographic Society and Action for Children, and invites young people aged 10 to 18 who are caring for a parent, sibling or someone else in their family to show off what makes them unique and happy.

REACH

“I think we’ve got over 8,000 children and young people across the UK caring for a family member, so there’s a huge number of young carers,” emphasises Vikki Phillips, service co-ordinator with Action for Children in Pembrokeshire.

“We wanted to reach as many of them

Young carers can see there’s lots of other people out there

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as possible and help people see what their lives are like behind closed doors.

“We hope they find enjoyment in it, but it’s also a chance to have their roles and what they do at home in the public eye.”

Once all of the entries are received later this year, the organisations will pick the best photographs for inclusion in the A Life in Focus exhibition, due to be held in Bristol. The photography exhibition will also be available to view online so that as many people can see it as possible.

SKILLS

Through the project, young carers will get to take part in free online photography workshops and access video resources to help them bring out their inner photographer.

“They’ll learn how to use different features on their phone camera so that they can continue to use those skills at home,” highlights Vikki. “We have already had the first workshop and one of the things we did was learn how to get a different perspective on things using the camera and also one looking at lines and shapes.

“It means they get to enjoy using their phones for other things than just playing games or speaking to other people.”

Caiden, who is 10-years-old, is supported by Action for Children’s

young carers service in Pembrokeshire and is taking part in A Life in Focus. So far, he’s been taking pictures of his dog, Feebee.

“I want to learn how to take good photos and can’t wait to learn,” enthuses Caiden. “I like taking photos of lots of different things like nature and my pets which mean a lot to me.”

COMMUNITY

Alongside showing the public what being a young carer looks like, one of the main aims of A Life in Focus is to show young carers that they’re not alone.

“Even though all of the resources are available online, young carers will get to do group sessions where they speak to other people in the same position as them,” reveals Vikki. “Action for Children can link people up with services across the UK so our young carers can see there’s lots of other people out there.

“Knowing that there’s lots and lots of other young people in the same situations or similar situations can really help them feel less isolated and it gives them a sense of community that they don’t normally get.”

FOR MORE INFORMATION

Find out how to get involved with the project online at actionforchildren.uk/lifeinfocus

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