Enable September / October 2021 by DC Publishing

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ADE ADEPITAN

Our columnist highlights the need for greater action on climate change

The UK’s leading disability and lifestyle magazine

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September / October 0 1

Reforming social care

The charities and young people demanding change

Inclusive employment

Putting disability on the business agenda

Grace Spence Green Finding community after acquiring a disability

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Get ready to enjoy another engaging issue of Enable Magazine for September and October

EDITOR’S PICKS... 34 EXAMINING BIAS Paralysed after sustaining a spinal cord injury in 2018, cover star Grace Spence Green opens up about overcoming unconscious biases and connecting with the disabled community. 40 MENOPAUSE AND YOU All women and people with a cervix will experience the menopause, but misdiagnosis can lead to new challenges for people with a physical or learning disability. 78 ACCESSING BIG BUSINESS Barriers to the workplace for disabled people still exist, from recruitment through to promotion opportunities. We speak to businesses trying to make a change.

The UK’s leading disability and lifestyle magazine

ocumenting memories is an important step with many conditions, including multiple sclerosis. On page 10 find out how Janis Winehouse is fighting MS and preserving her daughter Amy’s legacy with a new documentary. As the world reopens and we begin to return to daily life, the importance of care is at the forefront of many people’s minds. On page 13, carers emphasise the important role that respite has to play before charities and young people discuss the need to reform the social care system on page 18. A strong family connection means being there when someone needs you most, but have you ever thought about adopting a disabled child or young person? On page 22 parents and a foster carer reveal the happiness and lessons a new addition can bring to your life. The thought of sitting down to have ‘the talk’ with your child might make you cringe, but accessible and accurate information on sexual health can lead to happy, healthy relationships. Learn how you can start a discussion and answer questions on page 31. Diversity and inclusion should mean more than ticking a box: on page 0 we find out how brands like Tommy ilfiger and P are committed to putting disability on the agenda, and on page 1 chief executive of The aluable 00, Joanna Mc rath, talks about leading the global movement helping CEOs to insight change. All of this and much more in the latest issue of Enable.

All the best,

Get in touch editor@enablemagazine.co.uk facebook.com/enablemagazine twitter.com/enablemagazine

Emma Storr, Acting Editor

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PUBLISHER Denise Connelly denise@dcpublishing.co.uk ACTING EDITOR Emma Storr emma.storr@dcpublishing.co.uk EDITORIAL CONTRIBUTORS Ade Adepitan Lorne Gillies Tim Rushby-Smith Alisdair Suttie Georgina Wasdall DESIGN AND PRODUCTION Alice Winslow production@dcpublishing.co.uk SALES Marian Mathieson marian.mathieson@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk

Behind the scenes READY, SET, RUN Acting editor Emma is lacing up her trainers for the Great Scottish Run Solo, completing 25 runs from now until 3 October 2021. The challenge is helping people to keep moving and stay motivated. FACE TO FACE After 18 months, the team at Enable are excited to be attending exhibitions in person again to meet you, the readers, and ﬁnd out what you want to see in future issues.

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ONLINE The Enable website covers all the breaking news pertinent to disability, alongside great interviews and more. From the experiences of people with a learning disability receiving the vaccine to coverage of the latest campaigns, ﬁnd more exciting content online now.

©DC Publishing Ltd 2021. 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.

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COVER IMAGE: © DOLLY CLEW ADE ADEPITAN PHOTO: © IAN WALLMAN

Welcome

What’s inside September / October 2021

INTERVIEW 10 RECLAIMING AMY As she battles MS, Janis Winehouse is embarking on a journey to preserve her daughter Amy’s legacy. 34 UNPICKING BIAS WITH GRACE SPENCE GREEN Grace Spence Green reveals how she turned a traumatic incident into an opportunity to connect.

VOICES 20 THE LANGUAGE OF DOWN’S SYNDROME One mother is on a mission to promote the correct language when talking about Down’s syndrome. 28 BUILDING A GREENER FUTURE Ade Adepitan discusses the need for action around climate change. 43 A MOVEMENT FOR CHANGE Georgina Wasdall explores the need for disability to be reﬂected in mainstream media.

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49 ACCESS: WHAT DOES IT TAKE? After a surprise encounter, Tim Rushby-Smith considers the impact of bias and access on disabled consumers and jobseekers. 67 IN CONVERSATION WITH THE MINISTER FOR DISABLED PEOPLE Could we be on the cusp of positive change for the disabled community? Justin Tomlinson speaks to Enable. 82 THE AMAZING ROSIE JONES Comedian Rosie Jones is increasing disability representation with her ﬁrst children’s book.

SPOTLIGHT 40 THE M WORD AND YOU The menopuase is continually misdiagnosed, leading to new challenges for people with a physical or learning disability. 50 THE POWER OF BRANDING Seeing yourself reﬂected in the media is key to feeling included: it’s time for big brands to add diversity into their marketing.

CARE 13 A CALL OUT FOR RESPITE With remaining concerns around the coronavirus, how are carers getting respite? 18 REBUILDING SOCIAL CARE We lift the lid on the need for dramatic social care reform. 22 A SAFE HAVEN From adoption to fostering, welcoming a child into your home is an enriching experience. 25 A UNIQUE BOND What more needs to be done to recognise sibling carers?

LIFE 16 YOUR VOICE HERE We learn about the technology helping people with MND to regain a sense of self. 44 AN UNCONDITIONAL PAW Providing valuable support, the power of pet therapy is undeniable.

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46 10

22 20

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Head to page 39 to enter our competition to win £100 in high street shopping vouchers. 53 PRODUCT ROUNDUP Our pick of the best products to provide independence and style from home and fashion to technology. 56 REQUESTING TRANSPORT FOR ALL Tackling the barriers to daily life for the disabled community. 59 DISABILITY’S FIGHT FOR CLIMATE As the UK prepares to host COP26, disabled voices need to be included.

HEALTH 31 LET’S TALK ABOUT SEX Everyone has the right to safe sex but currently, there isn’t equal access to sex education. 37 LUPUS: TIME TO TAKE ACTION This Lupus Awareness Month, one charity is helping to share information and support. 46 FINDING MINDFULNESS Take a deep breath as we delve into the world of mindfulness with Headspace expert Eve.

SPORT

EMPLOYMENT

62 THE FUTURE OF VIEWING BT Sport is changing the viewing experience with accessible formats that are inclusive of all.

74 A GLOBAL ADJUSTMENT Equipped with a new, dynamic tool, Accenture are changing the process of requesting workplace adjustments for the better.

FINANCE 64 YOUR AFFAIRS IN PLACE With a lasting power of attorney you and your loved ones can feel better prepared for the future. 68 UNDERSTANDING YOUR MONEY From beneﬁts to budgets we look at the best ways to take control of your ﬁnances. 71 PENSION PROTECTION How can you ensure you get the most out of your pension and avoid fraudulent scams?

MOTORING 60 REVIEW KIA SOUL EV Alasdair Suttie helps charge your knowledge of electric vehicles.

77 THE POWER OF TRAINING Helping people with a learning disability or autism, Project SEARCH is an innovative programme building skills for the workplace. 78 ACCESSING BIG BUSINESS Speaking with Unilever, PM and venbreak, we ﬁnd out how big businesses are breaking down barriers to the workplace. 81 LEADING THE VALUABLE 500 hief executive ofﬁcer at The Valuable 500, Joanna McGrath, is helping organisations put disability inclusion at the top of the business agenda.

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News DWP ask for your views on the benefits system

GLOBAL CAMPAIGN TO POWER INCLUSION ORGANISATIONS ACROSS THE globe have united for a decade-long campaign to transform the lives of disabled people around the world. WeThe15, launched to coincide with the Tokyo 2020 Paralympic Games, aims to end discrimination towards the disabled community and act as a global movement, publicly campaigning for disability visibility, accessibility and inclusion. Spearheaded by the International Paralympic Committee and International Disability Alliance, the campaign brings together the biggest coalition ever of international organisations from the worlds of sport, human rights, policy, business, arts and entertainment.

THE DEPARTMENT FOR Work and Pensions (DWP) recently published its Shaping Future Support: the Health and Disability Green Paper, and is now asking for your view on how services need to change. The paper outlined the UK Government’s proposals to improve the experience of disabled people and those with health conditions. A 12-week consultation is now taking place until 11 October, including online events with opportunities to participate and express your opinions on the proposals. On 30 September, a virtual event will see the DWP ask for your views on changes that could be made to the current structure of the beneﬁts system. In a statement the DWP said: “Don’t miss the chance to shape the future of the beneﬁts system by responding to the Shaping Future Support: the ealth and Disability Green Paper consultation.” Book your place now via Eventbrite (www.eventbrite.co.uk).

NHS says it’s not too much to mask AS CORONAVIRUS RESTRICTIONS ease across the UK and some legal requirements around wearing face coverings and social distancing are removed, charities are urging the public to consider others. The Not Too Much To Mask campaign asks the public to keep vulnerable people safe, including those with autoimmune conditions or people unable to get both doses of the vaccine yet.

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A total of 31 charities, colleges and other organisations are part of the campaign which is led by NHS Confederation. It asks the public to follow ﬁve steps: wear a face covering; keep indoor spaces ventilated; clean your hands regularly; get tested; get both doses of the vaccine when asked. Pledge your support by using #NotTooMuchToMask on social media.

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Available on selected dealer stock only. Please contact a participating Ford dealer for more information. Model shown is a Puma ST-Line X, 5 Door, 1.0 EcoBoost 125PS mHEV, Manual, Petrol with optional ‘Desert Island Blue’ Exclusive Body Paint. Fuel economy mpg (l/100km) (Combined): 52.3 (5.4). CO2 emissions: 122g/km.

Figures shown are for comparability purposes; only compare fuel consumption and CO2 figures with other cars tested to the same technical procedures. These figures may not reflect real life driving results, which will depend upon a number of factors including the accessories fitted, variations in weather, driving styles and vehicle load. This programme is subject to the standard conditions of the Motability Scheme hire agreement. Full written details and quotations available on request from a Ford Authorised participating Dealer of Motability Operations Limited. Motability Scheme vehicles are leased to customers by Motability Operations. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority under reference number 735390. To qualify, you must be in receipt of the Higher Rate Mobility Component of Disability Living Allowance (DLA), the Enhanced Rate Mobility Component of Personal Independence Payment (PIP), the War Pensioners’ Mobility Supplement (WPMS) or theenablemagazine.co.uk Armed Forces Independence Payment (AFIP) and applications must be made with participating dealers between 1st July and 30th September 2021.

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Fuel consumption in mpg (l/100km) for the models shown: Combined 53.3 (5.3), CO2 emissions 120g/km. MPG figures are official EU

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Fuel consumption in mpg (l/100km) for the models shown: Combined 55.4 (5.1), CO2 emissions 115g/km. MPG figures are official EU test

figures for comparative purposes and may not reflect real driving results. The figures shown here are for limited comparison purposes; Fuel consumption and CO2 emissions are tested using WLTP. Only compare fuel consumption, CO2 and electric range figures with other cars tested to the same technical procedures. For more information about WLTP please refer to kia.com/uk. Models shown: Picanto ‘GT-Line’ 1.0 66bhp MT at NIL Advance Payment. Specification varies across the range and is subject to change without notice. For further information and full details, please contact your local Kia Motability Accredited Dealer. Motability is offered on selected vehicles across the Kia range, find out more at www.kia.com/uk. 7 year / 100,000 mile manufacturer’s warranty. *From a ‘3’ grade

JANIS WINEHOUSE: RECLAIMING AMY More than five thousand people are diagnosed with multiple sclerosis every year and in some cases the and thinking. Through a new documentary, Janis Winehouse is embarking on a journey to preserve her daughter Amy’s legacy

10 enablemagazine.co.uk

PHOTO: EDB IMAGE ARCHIVE_ALAMY STOCK PHOTO

condition can have a detrimental effect on memory

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interview

s a complex condition, diagnosing multiple sclerosis - commonly referred to as MS - isn’t easy: in 2003 Janis Winehouse received a diagnosis of secondary progressive MS after experiencing symptoms for years. Describing the stage after a new diagnosis as a mineﬁeld, Janis is now dedicated to raising awareness of the condition while maintaining a positive attitude.

PRESERVATION

PHOTO: BBC / CURIOUS FILMS / WINEHOUSE FAMILY PHOTO

First airing in July 2021, Reclaiming Amy marked the ten-year anniversary of the passing of Janis’ daughter, Amy Winehouse. The documentary features friends and family alongside Janis as they share the impact her loss had on them. Reclaiming Amy was an important step in honouring her daughter’s legacy and celebrating her life, but the personal look was also an act of preservation for Janis. Problems with memory and thinking, also known as cognitive problems, can affect people with MS but aren’t as common as some other symptoms: around half of all people with the condition live with these issues which can also disrupt decision making, understanding or concentration, planning and attention span. “Not everybody with MS is going to have a memory problem,” emphasises Janis who does experience this. “Unfortunately, it’s just touched the brain, it’s just a struggle sometimes to get things out. “It’s like starting a computer programme that’s gotten a little bit scrambled: you get all of the information but you can’t always decipher it in the correct way.” When ﬁrst approached about making the documentary, Janis was hesitant with concerns around her daughter’s portrayal, she explains: “I was very unwilling to sort of make this documentary and it took quite a lot of discussion with the way it was going to go, with how it was going to be perceived and it did change track slightly along the way.” A desire to preserve her memories of Amy was Janis’ main inﬂuence in agreeing to be part of the project. “The best thing was to do it while I still remember because this condition has a tendency to have an effect on the mind,”

adds Janis. “I may forget so I thought it’s a good time to do it while I still can.” Throughout ﬁlming, the team behind the documentary were mindful of Janis’ condition, working in the mornings when she is more active and always taking on her input. “I think the result proves itself, it’s the most wonderful documentary,” expresses Janis. “Sadly, it didn’t touch on the illness as much as we would possibly like, but I understand we only had a limited time. “I’m very proud of the documentary, they did a great job and I’m very pleased with it.”

Janis and Amy

AMBASSADOR Janis’ work to raise awareness about MS didn’t start with the documentary: in 2019, Janis was named an MS Society ambassador (www.mssociety.org.uk). “Being an MS Society ambassador for me is always a place of much pride and an honour,” expresses Janis. In her time as an ambassador, Janis has attended multiple events to discuss her experience and help support other people who have recently received a diagnosis. “We’re incredibly grateful to Janis for her continued support as an MS Society ambassador,” explains Nick Moberly, chief executive of the MS Society. “Janis goes above and beyond to raise awareness of the condition.” During the last few months of 2021, Janis’ work to raise awareness of MS will continue as she attends MS Walks around the country.

RESEARCH MS affects more than 130,000 people in the UK with treatment often aimed at managing symptoms rather than tackling

the condition itself. In order to stop MS and ﬁnd reliable treatments, there has to be a greater dedication to research. “Technology is moving so rapidly these days, I think you only have to look at the success of the [coronavirus] vaccines in such a short period of time to see if enough money is thrown at something, we’ve got the science and the technology to try and help people,” states Janis. “That’s why it’s important to keep pushing for MS research.” Janis is currently part of the MS STAT-2 trial, a phase 3 trial testing if a medication called simvastatin can slow progression in secondary progressive MS. “We’re going in to the third and ﬁnal year of that now, I don’t know whether I’m on the placebo or the treatment,” explains Janis. “It’s important we keep doing this and doing trials, once we’ve done this one we will probably try another to see if we can help.”

POSITIVITY For Janis, maintaining a positive attitude and outlook on life is a key part of managing her condition and the effect it has on her daily life. “You can lead a full life and you can be positive about it, I feel I’m in the best position to get that point across and also to help raise funds for the MS Society,” reveals Janis. Always one to try new things, Janis has gotten into the habit of saying yes to anything she can, once leading to a fundraising skydive. “I’ve just had to adjust my lifestyle and work around it,” adds Janis. “Negativity doesn’t exist in our world, I like to be positive about everything.” Although the documentary has aired, Janis’ ﬁght to preserve memories of her daughter is ongoing, utilising her reach on social media and as a co-founder of the Amy Winehouse Foundation: working to support and inform young people through programmes inspired by the challenges Amy faced in her life.

FOR MORE INFORMATION Watch Reclaiming Amy now on BBC iPlayer (www.bbc.co.uk/iplayer) or learn more from the Amy Winehouse Foundation (www.amywinehousefoundation.org).

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A CALL OUT FOR RESPITE

Prior to the pandemic, many unpaid carers were dedicating their time to others by providing care. The need for respite was present before lockdown, but now the urgency for a helping hand is tangible. With concerns around contamination, how are carers getting respite?

uring the pandemic, many unpaid carers were left at breaking point as respite services and day centres were put on pause. Additionally, some people became carers for the ﬁrst time – in some instances, unpaid carers don’t realise the roles and responsibilities they hold. As restrictions have been lifted and the world returns to normal, concerns around letting people into your home to provide respite care are lingering.

OVERWHELMED Raising four children, Ruth Higginson and her husband felt under intense pressure during lockdown. Out of Ruth’s triplets – Jamie, Amelia and

Phoebe – both girls have been diagnosed with GRIN2B-related neurodevelopmental disorder. Living with this gene means Amelia and Phoebe rely on their parents, brother Jamie, older sister Josie, and carers to complete every single daily task. However, as the UK went into lockdown, Ruth and her husband made the difﬁcult decision to remove all external care to keep Amelia and Phoebe safe. “It was overwhelming,” reveals Ruth. “I don’t do very well feeling out of control and I felt everything was out of control more than usual. We are trying to keep our heads above water because if we don’t, nobody else will be there to help.”

Amelia and Phoebe

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RESPECT Upon learning that Amelia and Phoebe would be required to shield to be protected from the coronavirus, Ruth was placed in an even more daunting position after being asked to fill out a respect form. Similar to many blanket Do Not Resuscitate (DNRs) unknowingly placed on people with a learning disability, Ruth had to complete the form detailing her wishes if Amelia or Phoebe were taken to hospital. Ruth remembers: “I had to detail how much intervention I wanted. I had to plead that their lives were worth living and I had to provide reasons – it was really difficult. “This gave me a wake up call. When I had to fill in the respect forms to think about them going into hospital, to think about them dying without us, I knew we had to keep them safe. I knew we would miss the carers but I felt I couldn’t put them at risk as I couldn’t forgive myself.” This process, alongside breaking off all care, left a large mental strain on Ruth and her family. Laura agrees: “We’ve seen a real increase in demand for social care, but that increasing demand hasn’t been matched by adequate investment in social care, which we really don’t think is acceptable.

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Anita and Billy

“ Know that you’re not alone

“

Before the pandemic, many families like Ruth’s spent 50 hours or more a week caring. With the removal of services – including specialist schooling – the need to provide additional care was required. “All services for disabled people have changed or had to stop, even schooling might have changed; that’s not necessarily a break for a carer, but that is a chance when you know your child’s having fun at school receiving a good education,” explains Laura Bennett, head of policy and external affairs at Carers Trust. The impact lack of respite has had on the mental health of carers has also been signiﬁcant.

“Mental health problems and stress is deﬁnitely something that we’ve been concerned about and it doesn’t feel like those concerns have gone away during the pandemic.” Raising four children, running a home, supporting Josie and Jamie with homeschooling, caring for her husband after he experienced a seizure, to providing around the clock care for Amelia and Phoebe, lockdown and a lack of respite deﬁnitely took its toll on Ruth. “I was so emotional and I stopped everyone from coming in, it was scary and I was frightened,” Ruth adds.

Stroke Association elpline, Anita has connected with many carers who have experienced challenges with a lack of respite during the pandemic. “We are carrying everything, we are doing it all. You wake up in the morning and just try your best and it is important not to be too hard on yourself,” Anita emphasises. “You need to look after yourself.” Anita and Billy saw some of their services put on pause due to the pandemic, but it is important to recognise that you cannot care for a loved one if you are unable to. Laura adds: “You can’t pour from an empty cup, if you’re not looking after yourself then you can’t look after the people you love to the best of your ability.” Knowing the importance of meeting the needs of Jamie, Josie and her husband, Ruth and her husband made the challenging decision of restarting their link family services for respite. Family Link services, where approved families work with a fostering and adoption service, help take over the care of a disabled child or young person for a designated period of time. Ruth emphasises: “In terms of our family, I think we are in a blessed position because we have the link carer. I don’t know anyone else who has a respite family and we’ve had them for 11 years, it is very rare. What would be good for others is to have a link family.” The need for respite is ever necessary, so Carers Trust launched their Prince Royal Respite Fund for Carers, providing funding for respite to over 30,000 families. Laura concludes: “Just know that you’re not alone.”

ISOLATED For Anita Tank, who cares for her husband Billy after he experienced a stroke, she has seen ﬁrst-hand the impact a lack of respite has had on new carers. As a volunteer for the

FOR MORE INFORMATION Guidance and support is available from Carers Trust (carers.org) and Carers UK (www.carersuk.org). Respite advice can be found at Carers Together (carerstogether. co.uk), Care UK (www.careuk.com) and your local foster or adoption centre.

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voice What would you do if you knew you could lose your voice permanently? Voice banking is becoming ever more popular for people living with motor neurone disease giving them the chance to regain a sense of self

iagnosed with motor neurone disease (MND), Garry Lowen knew that there was a risk he might lose his voice. A common symptom of MND is weakness in muscles in the throat and tongue area, leading to problems with speech and voice. “One of my greatest joys in life is talking and communicating with the guests,” enthuses Garry who runs a bed and breakfast with his wife. “One of my greatest anxieties was losing my voice. Out of anything, I wouldn’t mind not being able to walk or use my hands but not being able to speak is my greatest fear and anxiety.”

banking to create a synthetic copy of their voice. “Voice banking aims to capture how a person sounds, their accent, their tone,” explains Richard Cave, speech and language project manager for MND Association. “It can never replace the voice, it won’t sound exactly like the natural voice because we speak in different ways.” Despite not being a carbon copy of an individual’s voice, it has a strong link to retaining a sense of identity. “We all know Stephen Hawking and we remember that voice and I knew he had MND and I was worried I would end up with a robotic American voice,” laughs Garry.

BANK

IDENTITY

In a bid to ensure he can still communicate, Garry connected with the MND Association to get involved in voice banking. Known as augmentative and alternative communication (AAC), or voice banking, participants can record a list of phrases in their own voice. The MND Association is working to ensure people have the opportunity and information to participate in voice

Richard adds: “How we sound and how we talk is really closely linked to our personal identity and how people perceive us and we perceive ourselves. Anything we can do for people with MND to preserve their identity, we will do that.” Provided with the relevant equipment free from the MND Association, Garry was able to record

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over 300 phrases over the period of a couple of days. “I wanted to capture some of myself and my phrases,” Garry emphasises. “I worked with my family and friends to develop phrases that they knew I would say. It all happened really quickly. “It was key to do this early because you might be too late, and that would add an extra stress onto this disease. I feel relieved and relaxed about this aspect of the changes that will come in the future.” Richard and his team are helping to ensure even if a natural voice is lost, people don’t lose their sense of individuality. “The way people talk is how people relate to each other,” says Richard. “Voice banking is helping to preserve a sense of identity and self.”

FOR MORE INFORMATION

To be supported when banking your voice visit the MND Association website (www. mndassociation.org) or call 0808 802 6262. Richard can be emailed for further advice, richard.cave@mndassociation.org

David and his VW Golf GTD David fell over a 3.5 foot wall and was told he would never walk again. Now he walks and drives almost every day. The VW Golf GTD isn’t just cool, it’s practical, with plenty of room in the boot for his scooter and hoist with the back seats still up. David has seen Kathy, a Lookers Motability Specialist, for several years and he is always impressed with her customer service and personal touch, ensuring he is happy with his car, even after he has left the forecourt.

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MOTORING FREEDOM WITH LOOKERS

Lookers Motability

09/08/2021 11:29

Over a quarter of a million working age disabled adults currently draw on social care and the current social care system has many benefits for the community, but for some organisations and individuals it is failing to meet its purpose

Rebuilding

SOCIAL CARE W

ith a wide reach, social care can be deﬁned as support for people to live with independence and dignity. Employing 1.5 million people across 1.2 million jobs, the vast nature of the sector’s workforce emphasises the key role it has to play in supporting society.

FUNDAMENTAL Chloe Timms is part of the campaign steering group at Leonard Cheshire and has lived experience of the social care system. “Good, properly funded social care gives disabled people independence, freedom, better mental health and the best quality of life,” stresses Chloe. “Good social care empowers us. However, in its current state social care is critically underfunded meaning it’s a daily, debilitating ﬁght for disabled people

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to obtain the care they need.” In its current form, Chloe doesn’t believe the social care system meets people’s basic requirements, forcing disabled people to rely on those close to them for help with everyday personal care. “In our quest for a fairer society, social care reform needs to be at the top of the agenda, not to just fulﬁl the bare minimum of basic human rights, but to give disabled people quality care that matches our needs,” expresses Chloe. Having seen the plight of the current system effect social care workers and carers as well as disabled people, Chloe is now part of the movement demanding drastic change and she wants it now. “Good social care empowers, it enables,” states Chloe. “Social care needs to be there for the disabled person getting dressed for a job interview, for the cinema lover needing support to go out and meet their best mate, for the disabled person having their hair washed to go out on a date. “We need to show non-disabled people what the problems are with social care. If they suddenly had money taken from their pockets just to use the toilet, they’d soon have something to say. This is horrifying and it cannot go on.”

PROMISE Passionate in their role of providing support and guidance to the disabled community, organisations across the UK are demanding a social care system that fully meets the needs of disabled people. “I think the pandemic has highlighted how important social care is as a sector, in terms of the value of the work and the people who undertake it,” explains Gemma Hope, director of policy at Leonard Cheshire.

The charity’s new Care for Equality campaign seeks to inform the public and inspire people to change the way they think about social care. “Each government of the UK needs to launch an extensive consultation exercise to gain disabled people’s views on how social care should be reformed in their country,” adds Gemma. Gemma’s thoughts and concerns are echoed by Jackie O’Sullivan, director of communications, advocacy and activism at Mencap, and co-chair of the Care and Support Alliance (CSA): representing over 75 leading charities campaigning for a properly funded care system. “We as a society owe it to people to fix this, we’ve got the evidence of why we need to do something and it’s really shocking and explicit,” stresses Jackie. Earlier this year, the CSA launched #KeepYourPromiseBoris, reminding Boris Johnson of the commitment he made to fix social care once and for all on his first day as prime minister. Various increases to funding have been made during the coronavirus pandemic, but temporary and often not enough, the system is now at risk of breaking down completely. “The whole thing is like a massive Jenga tower: you start to take one bit out and suddenly the whole thing collapses,” adds Jackie. The involvement of disabled people, their carers and the social care workforce is essential to rebuilding a better system. “We need a different approach in terms of social care provision, I don’t think it’s just about money,” reveals Paul Edwards, director of clinical services at Dementia UK. “We really need to think about how we live in our society and how we support those people who need social care to carry on living their lives. “We risk creating higher levels of vulnerability and of people needing support, we’re almost creating a clinical dependency if we don’t act.”

INCLUSIVE FUTURE Social care is important to all ages, but one group is using digital reach to highlight their needs: young disabled people exist and they want their voices to be heard. At 24-years-old, equality and human rights activist Kelly Given has already been named on the Shaw Trust’s Disability Power 100 list for 2021. Constantly challenged during the process to receiving an autism and ADHD diagnosis, Kelly is passionate about creating a more accessible and inclusive world for all. “The consequences of that for me were huge, we can’t keep expecting people to go through these processes and to face this, they should be given the help and support they need the ﬁrst time around,” emphasises Kelly. “We’ve never had a massive opportunity like this to reform the entire system and I think if we don’t take that opportunity there will be a real injustice problem.” Without reform, the social care system is leaving young disabled people without access to suitable housing, meaningful careers and ﬁnancial support. “There’s a huge conversation with young disabled people in the community, they’re the ones who tend to be spoken over,” reveals Kelly. “Across the board, young people tend to be spoken over and patronised when it comes to stuff like this, there’s almost this silent idea that young people aren’t capable of bringing good ideas to the table. “They’re very clued up on what they want and what they need, they deserve to be heard.” Without immediate action and change, the current social care system will continue to leave disabled people and their carers behind.

FOR MORE INFORMATION ind out more a out the ﬁght or social care re orm and the organisations in ol ed rom eep our romise oris (www.keepyourpromiseboris.com), and ollo ell i en on itter @kellylgiven

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The language of DOWN’S SYNDROME The use of language is a powerful tool, but when it comes to disability, discriminatory language is often seen as the norm. Now, one mother is helping to promote the correct language to use when talking about Down’s syndrome through eye-catching resources

own’s syndrome is a learning disability that often comes with a lot of misconceptions and negativity. From the institutions of the 1960s to inaccurate terminology used in the mainstream media, society and in some cases, medical settings, there is a long way to go. Coming out of lockdown, Becca realised she was apprehensive of returning to a life where misjudged or offensive comments were made about her son, Arthur, who has Down’s syndrome. Although many of the comments received were meant without malice, Becca realised that it was through lack of education and awareness that they continued.

EDUCATION “Before launching the campaign, I would hear unconscious bias and negative language in my community nearly every day, I now hear it about once a month, if that,” enthuses Becca. “It has made such a difference, people are getting it right. It is so positive.” Teaming up with design studio Bear and Pear, Becca decided to create a series of brightly coloured, educational cards highlighting the correct language to use to launch Language Creates Reality.

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Becca continues: “This came out of my lived experience, other parents sharing their experiences of negative language and also being part of forums such as Positive About Down Syndrome (positiveaboutdownsyndrome.co.uk)”

STRIKEOUT “When looking at historic campaigns that detailed what you shouldn’t say, I wanted to instil the positive back into our brains,” Becca adds. “People need to know what is wrong to know what is right, and if the wrong has a line through it, then subconsciously we don’t hang onto the negative wording.” Striking out sentences such as “a Down syndrome baby” to be replaced with “a baby with Down syndrome”, alongside a blurb of information detailing the need for person-ﬁrst

language, the eleven cards are already making a positive impact with the Down’s Syndrome Association (www. downs-syndrome.org.uk) also sharing the cards on their channels. “Using correct language means my son is included, that he is an equal in society, as he should be,” stresses Becca. “I don’t think you can ever underestimate the impact of negative language.”

FUTURE As an actor, Becca is also utilising her media contacts to further educate organisations and wider society on the power of positive language and communication. Working to further expand Language Creates Reality and turning her YouTube channel, Arthur’s Club – where Becca reads and signs popular children’s books in Makaton – into a dedicated production: the conversation around Down’s syndrome is certainly set to change. For other families in a similar situation, Becca advises: “If things get tough, look at the human in front of you and they will be your anchor.”

FOR MORE INFORMATION

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Take a look at the Language Creates Reality content online (www.languagecreatesreality.com), and follow Arthur’s Club on YouTube (www.youtube.com/ArthursClub).

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A SAFE

HAVEN

Welcoming a child or young person into your home is an enriching experience for families, especially if they have experienced hardships at the start of their lives. From adoption to fostering, three people share their experiences of giving a disabled child their safe haven

peaking up and standing up for vulnerable children, adopters across the UK help to provide a child or young person with a stable, loving home. Thousands of children are waiting to be placed in their forever home annually, however, children or young people with a disability can face increased barriers to placement. Taking the leap to welcome a disabled child or young person into your home can be a positive experience for everyone.

NATURAL Couple Matt and Victoria have had a breadth of experience when it comes to adoption and disability. Having been raised in a family that had eight adopted siblings – all with additional or complex needs – Victoria knew that adoption would always be part of her future. Matt, who trained as a special educational needs teacher, was also eager to pursue adoption. “It was always a very natural decision,” enthuses Victoria. “I grew up seeing how families develop and grow.” The couple soon welcomed their birth son, Benjamin into the family but after experiencing a miscarriage they decided to look further into the application process for adoption. Upon being approved, it

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wasn’t long before the parents saw their prospective son. Victoria continues: “We just fell in love with Henry’s face, he had a mischievous look and glint in his eye and looked adorable.” Henry, who has Down’s syndrome, was soon welcomed home.

GROWING The family then had two more birth children before adopting their fifth child, Emilia, who also has Down’s Syndrome. Her foster parents then introduced them to Home for Good. They connected with the ethos of the charity and have since become involved as champions, raising awareness of the challenges disabled children face whilst waiting for a permanent home. While Matt and Victoria had professional and personal experience that made them a good fit, this isn’t necessary: anyone can make a difference to a child with a disability through fostering or adoption. “Ultimately, they are just children,” expresses Victoria. “This child needs permanence and a family just as much as the next child. We want all our children to reach their full potential whatever that might mean.” From fostering to adoption, there are many ways you can help a disabled child or young person flourish by giving them a stable environment.

FOSTER At the age of 25, Trevor Elliot MBE decided fostering was the right option for him. Unlike adoption, fostering is a temporary placement and foster carers provide a parenting role while local authorities and the child’s birth parents make all the decisions for the child or young person – meaning they maintain legal responsibility. At ﬁrst, Trevor was committed to helping children and young people in his local area of London to get away from gangs, or providing a refuge for those coming out of correctional facilities or who have fallen into a life of crime. But, ﬁve years since becoming a foster carer this swiftly transitioned to Trevor fostering three young adults, one of whom was a refugee unable to speak English and another diagnosed as autistic shortly after being placed with Trevor. Trevor explains: “They didn’t want to diagnose him so young as autistic because they didn’t know if it was

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PHOTO: TIM STEPHENSON PHOTOGRAPHY

neglect from his past life. He had also made so much progression with me, we thought it was just neglect. Since then, he has showed more autistic traits and he was eventually diagnosed.”

LEARNING Supporting his three foster placements, Trevor has seen the challenges that can arise when helping young people who have faced hardships. Referencing the experiences one foster child has lived through coming to the UK as a refugee, Trevor empathises: “At night, sometimes, you can hear him crying out all the pain and suffering he has seen. I wish I knew how mentally challenging [fostering] would be.” For Matt and Victoria, coming from personal and professional backgrounds inclusive of disability, they felt equipped with information but soon realised that, as parents, new challenges would arise such as advocating for their children.

Victoria says: “We have learnt so much from having Henry as our son and growing and developing with him, he has brought so much insight into our lives. He had a really rubbish start to life and I can’t make those things OK for him, that is really hard as parents to know that your child had issues when you weren’t there to protect them. “Although I cannot take that away, I can give him strategies to deal with this and it isn’t the end of his story.” Despite the hurdles faced, including misconceptions on siblings of disabled children, Matt adds: “The rich dynamic of our family has is brilliant. Each one brings something to their sibling relationship, Henry and Emilia have taught all our children things that we never could have.” Launching a home for vulnerable children during lockdown, Trevor is now turning his sights to helping and caring for more young people. And his experience of caring for the

young autistic man has meant Trevor’s ambitions on who he wishes to support have been amended. “There’s something about children that just inspires me,” enthuses Trevor. “I’m just amazed at children and young people and their strength.” Connecting children and young people to a home through fostering, or helping prospective adoptive parents: there is no denying the beneﬁts of welcoming a disabled child into their safe haven. Matt and Victoria encourage people to mark all achievements and take pictures of everyone in the family: it isn’t just your unit, it’s your child’s unit.

FOR MORE INFORMATION Support and advice on adoption is available from Home for Good (homeforgood.org.uk), alongside Matt and Victoria’s blog, The Running Shorts (www.therunningshorts.co.uk). Your local council can also provide insight into adoption and fostering (www.gov.uk).

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unique A

Your sibling is a best friend for life, and growing up with a disabled sibling can present different challenges and celebrations. However, when providing care for a disabled sibling new barriers may arise, what more needs to be done to recognise the connection between siblings?

roviding care and support for a parent or grandparent is universally recognised. When sharing your experiences as a carer for a sibling, the level of support and understanding can dwindle. This is the experience of many people across the UK providing vital care, guidance and affirmation to their siblings. A carer for her younger brother who is in his forties, lives with Down’s syndrome and is autistic, Sinead has seen first-hand the misunderstanding towards choosing to be a carer for your sibling. “I find it very frustrating

especially for people like my brother at his stage in life especially there are a lot of challenges,” reveals Sinead. “There is an attitude that we cannot look after [our loved ones], you even get this from family and friends. “People say it is too complicated or you don’t want to be his carer you want to be his sister,” Sinead continues. “We’re the ones that know him best, we are the people he wants to be with and there is someone very willing to provide the care so, why don’t you help us? There is an attitude, especially if there are difﬁcult challenges, that a person shouldn’t be at home.”

BOND

UNITED Travelling through life together, having a disabled sibling can come with speciﬁc challenges, but, for many siblings, their way of growing up is normal to their experience and the bonds that can be created amongst siblings is one unlike any other. For Sinead and her brother, growing up in the 1970s meant that understanding of disability, particularly a learning disability such as Down’s syndrome, created new hurdles for the family. Sinead remembers: “Things were very different then. The level of support

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for my parents wasn’t available and there was an attitude that you get on with the rest of your family and he can get looked after by someone else.” Spending some time living in a home, Sinead’s brother moved back into the family home at the age of ﬁve where Sinead had the chance to reconnect, but some caring responsibilities were soon adopted by Sinead who wanted to support her parents as they cared for her younger sister. Even though Sinead was actively caring for her brother, their parents were always conscious that their daughters didn’t feel obliged to give care. “We did form an incredibly close bond, I was a little more hands on since I was a very young age,” explains Sinead. “I didn’t really know my brother was disabled, I was aware that he was different from comments made in school but my parents brought us up the same as any other family would. From my point of view, it was a relatively normal childhood.”

CARE SYSTEM As Sinead, her brother and sister got older, she was always aware that she would one day continue to care for her brother. Moving into adulthood, Sinead’s brother moved into residential care living in the same accommodation for 15-years until the level of his care deteriorated alongside his health and behaviour, leading to Sinead’s brother losing his accommodation overnight. Sinead has since been caring and living with her brother and parents – with intermittent time living in specialist residential care homes – experiencing ﬁrst-hand the trials and tribulations of the current care system and providing adequate care.

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Cherish your siblings

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“The experience of being a sibling isn’t limited to childhood – it can affect siblings across the lifespan,” shares Clare Kassa, chief executive of charity Sibs which supports half a million young siblings and over one and a half million adult siblings. Many adult siblings can experience isolation and an impact on their wellbeing. Sinead has faced barriers to providing care, especially as her brother’s needs have changed. Having lived in a residential care home setting with people living with severe complex needs and mental health conditions, the experience was incredibly traumatic for Sinead’s brother. Sinead reveals: “If I can possibly help it, he is not going back into care.” However, Sinead’s relationship with her brother has changed. “He has changed as a person in the last couple of years; we still have that bond as far as the connection but our daily relationship is very different to what it was a few years ago,” adds Sinead. “He is actually incredibly challenging and it is a stressful situation that we ﬁnd ourselves in.”

TOGETHER Most importantly, Sinead is not alone in her caring experiences and responsibilities. Clare explains: “Siblings are very often overlooked by services and care providers and their

role can go unacknowledged. Siblings struggle to self-identify, they see themselves as brothers and sisters, rather than as carers. We need the role of siblings to be more identiﬁable, and for siblings to receive the timely care and support they deserve. We want services to understand that family carers aren’t just parents – they are siblings too.” Despite the challenges and the need for improved support and information, Sinead stresses the beneﬁts of being with her brother and her passion to advocate for the disabled community. Clare highlights: “People recognise that having a disabled brother or sister has brought them unique positive experiences not shared with their peers. Many siblings also provide allyship for disabled people – using their sibling’s experience to campaign for change.” “Cherish your siblings,” Sinead emphasises. “If you let them, your sibling will show you a very different way of looking at the world, which is to be treasured.” FOR MORE INFORMATION Assistance for siblings can be found from Sibs (www.sibs.org.uk), Contact (contact.org.uk), Down Syndrome Association (www.downs-syndrome.org.uk) and the Challenging Behaviour Foundation (www.challengingbehaviour.org.uk).

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Ade Adepitan

A GREENER FUTURE In his latest column, Ade Adepitan discusses the need for greater action around climate change and the role disabled people’s needs should play

PACE Before we can truly tackle climate change we’ve got to face up to some hard facts. The industrial revolution improved life for millions bringing prosperity and wealth to western cities, but the long term damage caused by the billions of tons of carbon dioxide, and other greenhouse gases we have pumped into the atmosphere to feed this revolution has meant that the world is warming at such a pace that even if we were to sharply cut our emissions today, it would still take at least another thirty years for our planet to start cooling down. I can totally understand how thinking about the global impacts of climate change can make you feel powerless. There are days when even I get down, thinking about what the future holds for my son. It’s his generation that will have to live through the consequences of this mess if my generation doesn’t act now. However, I do see this as a great opportunity for us to reassess our values and rebuild our world.

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Amidst all the doom and gloom there’s

“

n 9 August, the Intergovernmental Panel on Climate Change (IPCC), a scientiﬁc group put together by the United Nations, released a major new report concluding that global warming is spiralling dangerously out of control and humans are “unequivocally” to blame. When I read these headlines a part of me felt a sense of relief, ﬁnally this topic was getting the attention it deserved. I also wondered if this could be the point when governments, as well as the general public, start taking the effects of global warming seriously.

IN TUNE Whilst I was making my BBC2 series, Climate Change: Ade on the frontline, I met some incredible people, ﬁnding ways to help us live more in tune with our planet. Houses in Sweden totally fuelled by solar and hydrogen power, cities like Copenhagen that prioritise bikes and public transport as ways to get around. I even visited a business developing methods to make insects an alternative source of protein which could potentially make us less reliant on cattle farming. Amidst all the doom and gloom there’s deﬁnitely hope, it may seem counterintuitive but I think the

solutions to the climate crisis could bring fantastic opportunities for people with disabilities. Especially if our government ﬁnally starts living up to its rhetoric of leading the world in the ﬁght to tackle climate change. Making the UK greener means looking closely into all aspects of our country’s infrastructure. This is when we have to demand that all new housing stock, public buildings and transport are built with accessibility and the environment as a priority, because an environmentally friendly country should mean a country that is built to include all of us.

Watch Ade host the Climate Crisis Advisory Group’s live stream on the last Thursday of each month via YouTube (www.youtube.com).

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LET’S TALK ABOUT H

aving open, honest conversations about sex, relationships and our bodies in the home can create an environment where young people feel comfortable opening up with questions or problems. For young people with a learning disability, these conversations are key to safe sex and relationships, and understanding that they have a right to sexual pleasure just like everyone else.

STIGMA Throughout society, a stigma around sex and sex positivity still exists, but for the disabled community – and people with a learning disability in particular – this judgement stretches further. “This is a topic that needs more doing about it,” stresses Anna Marriott, research and evaluation programme lead at NDTi. “It’s your right to be a sexual being and have your sexual needs met whether that’s in a relationship or in other ways, but there’s also responsibilities around it in terms of consent and sexual health. “If you don’t have the right sex education, how do you expect people to know what those responsibilities are?” Adapted and accessible sex education is fundamental to having safe sex and relationships, from understanding consent to spotting red ﬂags in people’s behaviour. “It important to have adapted sex education for people with learning disabilities so they can learn about sex, what to do and about things like sexually transmitted infections,” explains Pam who has a learning disability and is a self-advocate at My Life My Choice. “I just learned through living my life and my experiences, I probably would have been better prepared if my mother

Everyone has the right to safe sex, relationships and sexual pleasure, but without the right information, young people with a learning disability can feel left behind

spoke to me about it but she never did.” Conversations with parents and carers can be powerful tools in reducing this stigma and equipping young people to have safe, enjoyable sexual experiences. “It’s a natural part of relationships and wellbeing, so everyone should be able to have it,” adds Lisa Davidson from My Life My Choice.

LANGUAGE The need for equality and sex positivity doesn’t just exist in this community: it is a problem across the board, but using

the right language is an important step in resolving it. “Everyone should have the same access to sex and relationship education because everyone has the same right to sexual relationships and romantic relationships,” explains Amber Newman-Clark, education and wellbeing specialist at sexual health charity Brook. “I think that for anyone, including people with learning disabilities, these conversations should just start when questions are being asked, that’s a sign that someone is ready to know the answer.”

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Sitting down with your child to have a conversation about sex can seem daunting and awkward: approaching the topic in a more casual, less clinical way can create a better stream of communication. You can even use social ques or props to help. “If you’re watching something on T or watching a ﬁlm together and it broaches the topic of sex and relationships, you can bring it up in a much more normal way,” suggests Eddi Gell, project manager at Equal Lives. “It’s just generally creating a culture where it’s ok to talk about sex and relationships.” Using accessible language and staying away from metaphors or euphemisms can be especially helpful, these can lead to misinformation and confusion. “Lots of small conversations can make a bigger impact and I do think that’s really important, especially for young people with learning disabilities,” advises Amber. “Building that core foundation really helps when questions around sex do come up.”

RESOURCES In recent years, the quantity and quality of resources has been improving, allowing parents, carers and young people to access accurate and accessible

“It’s your right to be a sexual being and have your sexual needs met”

information. Although provision is getting better, the need for lived experience and expert advice still exists. That’s why Eddi and the team at Equal Lives are now working to create a modern resource, looking at sex, intimacy and disability. Considering the lived experiences and views of young disabled people, the new project will culminate in the form of a podcast and other resources. In each episode, the podcast will feature experts from the sex and relationships industry with content based from listeners’ questions, each episode will also come with notes and question sheets to use at home. The aim is to create a modern, accessible form of content that is long-lasting. “It should allow people to be a bit more engaged with the content and apply that to their own lives,” explains Eddi. “It’s really important to make sure these resources are going to be accessible to everyone regardless of background knowledge or lived experience.” Along with resources for young people themselves, these organisations are encouraging parents and carers to educate themselves so that when questions arise, they are prepared. “It is really important and we encourage parents to educate themselves so they know the answers to these questions,” emphasises Eddi. “Then when someone’s ready to ask those questions you’ll be informed enough to know the answer and to share that in a positive way, but also conﬁdent enough to say I don’t know, how about we go home and we can look it up together.” Seeking support from your GP, a learning disability nurse or your local sexual health clinic is a great way to ﬁnd information. Starting an open conversation can help reduce concerns, confusion or embarrassment around sex for young people with a learning disability.

FOR MORE INFORMATION For easy read resources and further information, visit Brook (www.brook.org.uk), NDTi (www.ndti.org.uk), My Life My Choice (www.mylifemychoice.org), or the Supported Loving Network (www.choicesupport.org.uk).

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Paralysed after being crushed by a falling man in a shopping centre in 2018, Grace Spence Green turned a traumatic incident into an opportunity to connect with the disabled community. Speaking with Lorne Gillies, Grace discusses adapting to her spinal cord injury and the importance of looking inwards to overcome unconscious biases towards disability

Unpicking bias with

GRACE SPENCE GREEN

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In what way did becoming a wheelchair user with a spinal cord injury make you reassess your understanding of disability? There was a huge denial. I felt I wasn’t supposed to be like this, this was not me. That was really tricky. For the past 22-years I had seen in the media that disabled people had it just terrible. I thought my life was going to be very small and awful, because I hadn’t seen any good disabled role models. It was really, really tough and I felt like I had to unpick a lot of internalised ableism that I had because I hated people seeing me in my wheelchair at ﬁrst, I was embarrassed by it. Looking back, it just seems so ridiculous. At the time, it was really hard to get to the place I am now – it took a lot of work, reading, talking to disabled people and connecting with the community. At the time of the incident, you were a medical student, now working as a doctor. How did this experience change you as a medical professional? When I woke from surgery, that was the

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disabled people had a lower quality of life. I unconsciously thought that. It just seems ridiculous that I had to confess all this to myself so I could then move forward. I had to really unstack all the biases I had so I could then move past it. It was a time of reckoning.

ﬁrst thing I asked: could I be a doctor again My university was really, really supportive. I was allowed to start the next year again. That was brilliant, they were so supportive but I still hadn’t seen anyone in a wheelchair working as a doctor I still didn’t understand how that worked. That was part of my recovery in general, to see ordinary disabled people having careers, families and things like that. Being a medical student, I also thought I was quite inclusive and open-minded. But I feel like I had to reckon with myself in some of the opinions I had and the biases I had. ven the unconscious biases that would come up. That was really quite shocking actually I had to have a hard look at myself. Before my injury I went about the world not thinking about accessibility at all because it seemed like not a me problem. I didn’t think much about accessibility, and I really thought, possibly, that

PHOTO: SCRUBS/GREEN TOP: DOLLY CLEW

Grace Spence Green

How do you hope sharing your story will change perceptions of disability? For me, I am being open about the biases I had. I’m starting a teaching course on disability at my university and what I really want to do there is to make it an open and comfortable environment for people to address their biases. People can get quite defensive about their opinions and they think they are nice people, but if we don’t address this, then nothing changes. ou have to feel a bit uncomfortable, I think, to make progress. I also think, knowing that I am a disabled person in the media and I’m not a Paralympian all credit to them I’m not doing some huge physical feat to prove I still have value in this world and I am not trying to walk again. I’m just myself, in a wheelchair, excited to start my new job, with a great family and fulﬁlling life. I don’t think there is enough of this shown. Alongside some other people living with a spinal cord injury, you have started a podcast, This is Spinal Crap. What do you hope people get from the podcast? We wanted to create something for people who are just injured to connect with and to create a resource for newly injured patients to get a hand on practical things. Also, hearing the experiences of others with spinal injuries returning to work or using public transport, going on holiday: something they could use to think about their next steps.

elping people to feel excited and know that hospital isn’t the end. It really is scary to get discharged I found that terrifying because you feel like you’re being thrown in the deep end so that’s why we wanted to create This is Spinal rap. I’ve also had so many non-disabled people or people without spinal cord injuries listening to the podcast, I didn’t expect that and it is really nice and I’m glad it is there for them, too. It’s just a group of people in their wheelchairs chatting about their different experiences there is a lot of variety between us. For anyone who has recently acquired a disability, what advice do you have for them? Don’t believe people when they say you cannot do something. There will be a bucket load of ableism thrown at you, so you need to ﬁgure out your own self-worth. It took me a while to not compare other people’s perceptions of me and make that my self-value. It was when I started reading, talking to more disabled people that I realised that my selfworth is not connected to what other people think of me. I wouldn’t be able to imagine where I am now two years ago. I didn’t see any role models for myself out there so I’ve just had to do it myself, that was scary. I think if you don’t see someone out there like you, you’ve got to create the model for it.

FOR MORE INFORMATION You can listen to This is Spinal Crap on Spotify (www.spotify.com). Advice on spinal cord injury is available from Back Up (www.backuptrust.org.uk), Spinal Injuries Association (www.spinal.co.uk), and Aspire (www.aspire.org.uk).

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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

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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

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Lupus: time to take action

Largely unspoken about, lupus can cause severe damage to the body’s organs, but a lack of awareness is creating long wait times for diagnosis and leaving people living with the condition at risk

t is thought that around one in every thousand people in the UK have lupus, but the condition often carries misconceptions due to its ﬂuctuating nature. upus Awareness Month, occurring annually in October, is an opportunity for organisations like upus U to share essential information and advice.

HIDDEN

Symptoms of lupus are often inconsistent between cases, translating into long wait times for diagnosis and in turn, treatment. “That length of time is going to have an impact on not just their working life but their relationships, their social life and all in all their quality of life, not to mention they could be accumulating damage which DIAGNOSIS will affect their long-term Lupus In the UK it takes an health,” explains Paul. Awareness average of six and a half ike 0 per cent of years from the onset of Month takes disabilities lupus is a symptoms to receive a place every hidden condition, but due lupus diagnosis. Figures to its fluctuating nature, it October like these are what’s can sometimes be difficult pushing Paul oward, chief to categorise as a disability, executive at upus U , to leading to further challenges create change. in gaining proper support, Paul says: “A lot of people haven’t even heard of “ upus is a tricky one when it comes to the disease when they’re first diagnosed disabilities and seeking assistance such with it and so diagnosis can be very as applying for a blue badge or disability scary,” empathises Paul. “We want to benefits, partly because it’s invisible make sure that people are able to access and because it’s rare so assessors support services and speak to other don’t often know very much about the people for reassurance.” condition.” upus is an incurable immune system illness that can affect any part of the AWARENESS body, manifesting in symptoms like In order to speed up the timeframe anaemia, mouth ulcers and hair loss. If for diagnosis and ensure people get the condition goes untreated, it can lead essential treatment, there has to to irreparable damage to the body’s be a greater awareness of what the organs.

condition is and how to spot the symptoms. “The public, but also the medical profession, need to be more aware of lupus and the signs to look out for,” emphasises Paul. “Many people are dismissed, they’re advised that their condition is related to stress or some other mental health condition rather than it being an ofﬁcial autoimmune condition.” Public awareness is also a key part of the month-long campaign, with the charity often hearing accounts of abuse when people with lupus use amenities like disabled parking bays. “People are harassed because they don’t look ill or they don’t look disabled and obviously that’s incredibly stressful and upsetting,” states Paul. More awareness of lupus, and other hidden health conditions, can only be a positive step, creating greater understanding for people at the stage of diagnosis and for the wider public.

FOR MORE INFORMATION

Lupus UK (www.lupusuk.org.uk) can provide information and support along with resources for Lupus Awareness Month.

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WIN OF HIGH STREET VOUCHERS Enter this issue’s competition to be in with a chance of winning £100 worth of high street vouchers

s we say goodbye to the summer months and enter autumn, businesses around the country are back open, and your local high street is no exception. That’s why this issue of Enable, we’re giving you the chance to win high street vouchers to the value of £100. Whether you have been shielding throughout the pandemic unable to get to the shops, helping to care for a loved one, or working on the frontline in a healthcare setting, you deserve to treat yourself. If there is a friend, family member or neighbour who has been especially helpful and supportive throughout the pandemic, treating them to a day at the shops might be the perfect thank you.

You can use your winnings any way you want: why not splash out and update your autumn/winter wardrobe as the weather gets colder, or indulge in something that you wouldn’t normally buy for yourself. If you are feeling more prepared than the team at Enable HQ, you could even start your Christmas shopping early so that you can sit back and relax with a mince pie when the festive season arrives. With the option to use your voucher at a range of retailers from fashion to food, there’s endless possibilities when it comes to how you spend your winnings.

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 High Street Vouchers. Or visit the Enable website and enter online at www.enablemagazine.com/ highstreetvouchers All entries must be received by Friday 22 October 2021. Good luck!

TERMS AND CONDITIONS: All entries must be received by Friday 22 October 2021. The prize is £100 worth of high street vouchers which will be sent to the winner. The prize in nontrans era le, non re unda le, there is no cash alternati e and cannot e sold to another part ne entr per household he pu lisher s decision is ﬁnal

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M YOU The

WORD

A passage in life that happens to all women and people with a cervix, despite half the population going through the menopause it is still continually misdiagnosed and misunderstood. For people with a physical or learning disability, the menopause can lead to new challenges

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spotlight

he menopause is a transition that all women and people with a cervix will experience at some stage in their life. From perimenopause, which can last several years, to having menopause – when you have not had a period for at least one year – very little is still known about the menopause and learning disability, despite the fact all women and people with a cervix will experience this. Additionally, the menopause can cause increased discomfort or exacerbate symptoms for some physical and hidden disabilities. It is not uncommon for people to get misdiagnosed when transitioning from perimenopause to living with the menopause. In fact, during perimenopause, where periods start to change and become more erratic or heavier, other diagnoses might be given such as ﬁbromyalgia, chronic fatigue, depression or irritable bowel syndrome. And, for many disabled people, misdiagnosis is not the only concern.

UNDERSTANDING “It’s important for everyone to learn about the menopause as it happens to all cisgender women and those with a cervix. That’s half the population,” stresses Dr Louise Newson, the UK’s leading menopause specialist. Founder of the free menopause support app, balance (www.balance-app. com), Louise is also the founder of The Menopause Charity, working to support everyone experiencing the menopause including working with the disabled community. Transitioning into the menopause is unique to every person and thus the need for understanding of different treatment methods is critical. The average age for menopause in the UK is 51, but there are different age variations including some people experiencing the menopause in their 20s, 30s or 40s – this is considered young. Your menopause will not happen overnight, unless you have had surgery to remove your womb (called a hysterectomy). Alongside individual occurrences, it is imperative that everyone who may get the menopause is educated and has the right level of knowledge and understanding – including the disabled community.

Louise continues: “I am working with people from the disabled community and professionals to try and help raise awareness of this huge area of need and we hope to produce some resources for healthcare professionals, carers and disabled individuals in the near future. “When these conversations are not had, or the person is unable to understand the implications, these life events can be incredibly distressing, confusing and bewildering, especially if you feel there is nothing you can do about it or become worried that you are seriously unwell.”

Dr Louise Newson

SYMPTOMS From heavier periods, increased levels of anxiety or a sense of dread, heart palpitations, headaches or even feeling dizzy: the symptoms of menopause can be both psychological and physical, lasting several years or decades. “For some women, they can be doing all the right things with diet and exercise and looking after their mental health, but they still struggle with symptoms on a daily basis,” explains Louise. “This is when you might want to think about getting treatment from a doctor. The most effective treatment for menopause symptoms is hormone replacement therapy (HRT). This simply gives the hormones back to your body that it is missing.” Taking into consideration what is right for your body is critical, but alongside misinformation for the disabled community and misdiagnosis, there is also critical misconceptions around speciﬁc menopause medication, primarily HRT. Following on from a 2002 study by the Women’s Health Initiative which stated HRT was associated with an increased

risk of breast cancer, many people are apprehensive of taking the medication which can be incredibly beneﬁcial and helpful. Additionally, the concerns over breast cancer are an outdated and inaccurate representation of HRT. Louise explains: “There is plenty of good evidence to show that for most women, it will help your symptoms, and it will also protect you from certain diseases in the future like heart disease or the bone-weakening disease, osteoporosis.”

TREATMENT Looking at all disabilities, different treatment methods are still missing the mark to provide the right level of support, so it is important to advocate for yourself or the person you care for when speaking with medical professionals. “Menopause care and treatment for people with learning and physical disabilities is a huge unmet need, not just in the UK but across the world,” explains Louise. “It is challenging enough for women without a disability due to widespread misunderstanding about the menopause and HRT, but when there is additional learning and communication needs, or a physical disability or ongoing health conditions, it makes accessing treatment extremely challenging. “If you have a physical disability, be aware that a drop in hormones could worsen some of the issues you might already face. Joint pains and muscle aches are incredibly common during the perimenopause and menopause.” Taking a record of your symptoms, possible with Louise’s app, preparing yourself to ask for more information, persevering with medical appointments if you believe you are perimenopausal or have the menopause and have been misdiagnosed and, most importantly, not giving up are all essential to ensure you have a positive experience moving into the next chapter in your life.

FOR MORE INFORMATION Advice and guidance is available from The Menopause Charity (www.themenopausecharity.org), Mencap (www.mencap.org.uk) and the Foundation for People with Learning Disabilities (www.learningdisabilities.org.uk). Download Louise’s free app, balance, on the App Store and Google Play.

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Georgina Wasdall

A MOVEMENT FOR CHANGE Model, actress and activist Georgina Wasdall writes about the need to see disability reflected in mainstream media, drawing upon her own experiences

edia has always inﬂuenced people’s perceptions of ideals in beauty, but this generation are breaking that mould and showing that every body is beautiful. For so long, I didn’t see people like me represented in the media, but we all deserve to see ourselves reﬂected: all shapes si es genders ethnicities sexualities disabilities and abilities.

MOVEMENT

CONTROL I myself have a chronic illness called Myalgic ncephalomyelitis (M ), sometimes known as hronic Fatigue Syndrome ( FS), and I’m an ambulatory wheelchair user meaning that when I leave the house, I need my chair to get around otherwise I’d be housebound. For so long, I rejected the idea of using a wheelchair and when I ﬁnally made the step to get my ﬁrst one, I despised it because it made me feel like I was letting my condition control me, when in fact it was the other way around. I was taking back control of my own life so that I could start living again.

I think that one of the main reasons why I didn’t accept my chair is because I didn’t see anybody like me in the media and whenever you did see a wheelchair or disability, more often than not it was and still sometimes is - depicted as something bad, playing a lot on typical stereotypes.

EMPOWERING It’s an empowering move getting a mobility aid and it’s about time it was shown in this light. ur mobility aids

“

Accurate, authentic representation can break down barriers

“

Television, ﬁlms and social media have the power to shape an audience’s knowledge and understanding about all matters including disabilities, whether they be visible or invisible. Accurate, authentic representation can break down barriers, open us to new ideas and even create powerful role models. Perceptions portrayed in the media directly inﬂuence the way people with disabilities are treated and viewed, but now, those in the media and arts are starting movements within the industries. A change for the better of us all.

are our lifelines to the outside world, our freedom and our independence. I’m trying to be the person I needed when I was a young pre-teen feeling lost and self-conscious after becoming a wheelchair user: I wasn’t born with my condition, it came into my life when I was 10 and I got my ﬁrst chair when I was 1 . I put myself out there to show that whether you are disabled or not it doesn’t matter. ou are you, unique and ama ing and you deserve to be seen. I am now showing that you can still have a great life and be disabled, you can still follow your dreams and be disabled. I’m proud to be disabled and I will continue to speak up about inclusivity for all. Representation is key in making this world more accepting and a better place for us all to live in, that makes us feel like we are just as worthy as everybody else, and just as worthy of being seen.

Follow Georgina on Instagram @georginawasdall

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paw AN UNCONDITIONAL

There is no denying the positive impact that can be had from interacting with an adored animal. From bringing back memories to providing physical support, the benefits of therapy animals cannot go unnoticed

nimals can be a wonderful tool to help people connect with others, alleviate feelings of isolation and even be a listening ear. Without judgement and always happy to lend a helping paw, hoof or a cuddle into fur: animals have been scientiﬁcally proven to lower blood pressure and heart rate, creating an effect of calmness. Ruth Boyes, a member of Therapy Dogs Nationwide, has seen the positive impact of pet therapy with her own dogs along with many other volunteers.

For Ruth, the experience of how important animals can be in care was felt ﬁrst-hand. After Ruth’s grandson was born with cerebral palsy, she noticed her rescue dog connecting with him despite not having an interest in children prior. Ruth recalls: “When my grandson used to sit in his special chair, our dog would sit beside him and let him touch her fur. I thought then: dogs have more understanding and care of disability than any human could. It was then that I got involved.”

IMPORTANCE

CARING

“The dog is totally non-judgemental,” enthuses Ruth. “They don’t mind if a person cannot walk or has burns: if a person needs them then the dog is there without discrimination.” Working in care homes, hospitals, schools, hospices, prisons, rehabilitation centres and supporting reluctant readers in schools, the team at Therapy Dogs Nationwide have had years of experience in the beneﬁts of utilising their temperament tested dogs.

Alongside the psychological and physical beneﬁts that dogs, and other registered therapy animals, can provide, there is no denying the unconditional love and adoration that can come from animals. “In terms of disability, our dogs don’t understand the word disability – our dogs visit people,” continues Ruth. “Although, the dogs do seem to have an innate understanding.”

Communication is another strong factor of the benefits of pet therapy. In the past, Ruth visited a residential home where one woman, living with dementia, didn’t usually speak or get involved. As soon as the dogs entered the room, the woman became more alert and eventually began to speak. “It helps people to stimulate conversation,” enthuses Ruth. “It was a beautiful moment where two people started to communicate.” Alongside inspiring communication, Ruth and her dog – dubbed Mr Charles, visiting consultant in general surgery, by on-site medical staff – visit a local rehabilitation ward that supports people who have experienced stroke or brain injury. During the visit, physiotherapists help the patients to stroke the dog, and Ruth has seen the power that this gesture can facilitate. Ruth enthuses: “It is quite moving sometimes. ou can see their fingers attempting to stroke the fur. In that sense, we are helping people with a severe long-term illness, condition or disability. “We do get a lot of tears as well as laughter,” reveals Ruth. There is no denying the benefits that animals can provide through unconditional love, void of negativity and a comforting, safe presence. FOR MORE INFORMATION

To learn more visit Therapy Dogs Nationwide (www.tdn.org.uk) or email enquiries@tdn.org.uk, further advice can be found at Motability (www.motability.co.uk) and Dogs for Good (www.dogsforgood.org).

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THE WINGATE SPECIAL CHILDREN'S TRUST

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For more info or availability please call 01270 780456 or email residential@thewingatecentre.co.uk The Wingate Centre, Wrenbury Hall Drive, Wrenbury, Cheshire, CW5 8ES www.thewingatecentre.co.uk Charity Number 327713

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1 N I W

A FOR OUNT ISC %D

FINDING MINDFULNESS Mindfulness is more than just a buzzword. Headspace expert Eve talks to Enable about the power of the practice and its importance in wellbeing support

ith strong roots in Buddhism, mindfulness is thousands of years old. In modern day, it is hard to escape the phrase when discussing mental health. The practice is more than just taking deep breaths, it is a tool to manage feelings of extreme stress and anxiety, and the world is catching on: around ﬁve thousand new meditation apps have launched since 201 .

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The leaders of the sector, Calm and eadspace, have an estimated six million subscribers between them, with things like sleep stories and sleepcasts, guided meditations and other tools available from both providers. Director of meditation for eadspace, ve ewis Prieto, used to be sceptical about meditation before a friend convinced her to attend a class. Working in an advertising

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setting, stress and anxiety were a daily occurrence, impacting Eve’s mental wellbeing, she remembers: “The power in just pausing and giving the mind some time to settle was really profound for me, it was the ﬁrst time ever in my life I intentionally put my mental health ﬁrst.”

MINDFULNESS Meditation and mindfulness can help us to understand our minds and how we relate to our thoughts, feelings and emotions. “When we are in the grip of anxiety it can be hard to approach a situation rationally or with any perspective and we can end up fanning the ﬂames of anxiety, I know that was the case for me when anxiety was ruling my life,” empathises ve. “Practicing meditation helps to cultivate some space between us, our thoughts, feelings and emotions. To step back and to view them with a different perspective.” The purpose of mindfulness isn’t to downplay our emotions, but to process them. “Ultimately, when we meditate we are training the mind to be more present, connected, less judgemental and more open,” explains ve. “As a result of that we tend to experience a great sense of balance, ease and compassion in our life, all of which supports our mental wellbeing.”

CRISIS At a critical point for mental health resources and support, there has been increased demand for meditation providers from workplaces and individuals: the Headspace for Work offering saw an increase of 500 per cent in requests from companies looking to support their employees during the pandemic, Eve says: “I think that is pretty cool, companies are really looking to help their employees, mental health has been such a taboo topic for far too long. “In the context of this crisis, mental health issues will be Eve the norm not

the exception,” adds ve. “These are not new problems - sadly they were here before this crisis, they spiked for many during the heights of the pandemic and they will unfortunately remain unless science and society transform mental health care, and let’s hope they do.” The high numbers of people utilising meditation apps could speak to a lack of mental health support in other areas, with many charities also citing a concerning increase in demand over the last 1 months. In the year since coronavirus restrictions began in the UK, Samaritans provided emotional support over 2.3 million times by phone and email. “I think we have a collective responsibility to keep mental health front of mind, the trauma and stress associated with COVID-19 is still front and centre for many,” stresses ve. “If you consider the healthcare provider community, the situations they’ve been exposed to could potentially lead to PTSD or other long-term stress disorders.”

ACCESS Practicing meditation and mindfulness can go further than tackling feelings of stress and anxiety, it can be a tool against loneliness and isolation. Attending meditation classes, virtually or in-person, having discussions about being more mindful with friends or using things like the Buddies feature with Headspace can all cultivate feelings of companionship. “The Buddies feature allows you to meditate with friends, colleagues or in groups and give each other encouragement should they need some motivation,” explains ve. “Mindfulness meditation has a broad relevance for anxiety, depression, stress, and sleep but it can also be helpful in addressing more complex issues such as uncertainty and loneliness.” Mindfulness is becoming more accessible to all: currently, Headspace and Calm both provide free resources online and in their apps, as well as being available through smart speakers. Headspace has also started to provide

closed captioning on some content with plans to expand this further. “At eadspace, we are committed to opening as many doors into meditation and mindfulness as possible,” offers ve. “We currently have several pieces of inclusive content that we suggest in the meantime while we fully transition all of our meditation and mindfulness content.” With the power to reduce anxiety and make people more present in daily life, how will you introduce mindfulness into your routine?

MINDFUL MOMENTS With practices like mindfulness, ﬁnding where to start can feel overwhelming. Finding mindful moments in your daily routine can be the ﬁrst step. • Take a pause: step away from your phone or laptop, stop your current task and take some deep breaths to reconnect with yourself. • Set time aside for you: spend a few minutes each day doing something you love to look after your mental health. • Stay active: when possible, take time to move your body each day. Regular exercise can help boost feelings of happiness. • Connect: reach out to people around you, in-person or virtually, to support yourself and others. • Wind down before bed: taking time to relax before bed can contribute towards healthy sleep. Try to create a calming bedtime routine and stick with it.

FOR MORE INFORMATION Mindfulness resources are available from Headspace (www.headspace.com), Calm (www.calm.com) and Mind (www.mind.org.uk).

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Tim Rushby-Smith ACCESS: WHAT DOES IT TAKE? Our columnist Tim Rushby-Smith considers the impact of bias and inaccessible spaces on disabled consumers and jobseekers

NECESSITY Of course, I said nothing. He’s a sponsor (we need the money), but it was more that the conversation moved on before I’d even registered his unhappiness about the requirements, let alone formulated a suitably pithy response. But afterwards I realised the full signiﬁcance of his blind spot. It was clear that he had never entertained the possibility that one of his clients could have a disability, much less that he might one day have a disabled employee. I began to wonder just what it takes for people to see equity of access as a necessity rather than a nice add-on. If it doesn’t even occur to the sponsor of a wheelchair basketball team, what else do we need to do?

“

UNUSUAL In my experience his failing, despite being surrounded regularly by people with a disability, is particularly unusual. I don’t see myself as a ‘brand ambassador’ for disability, but I am conscious that my interactions with other people frequently have an impact on their perceptions of disability. I say this partly because I am a ‘convert’ (I became paraplegic when I was 3 ), and I often reﬂect on how I was oblivious to many aspects of disability and inclusion prior to my accident. For my close friends, my injury also signalled the start of their own journey toward understanding why universal access should be expected not exceptional. So, I have decided that we need to employ more direct tactics to help our sponsor on his journey. Perhaps I shall pay him a call at his ofﬁce. And if that doesn’t work? Maybe we can get him into a sports wheelchair at a ‘come and try’ day with the club… and pelt him with basketballs.

He had never entertained the possibility that one of his clients could have a disability

“

ollowing a weekend of wheelchair basketball recently, I was having dinner with some of the team and one of our major sponsors. The sponsor runs a financial services company, and has been a loyal supporter of the club for many years. Suffice to say that he has spent a considerable time around people with disabilities. You can imagine my surprise when the sponsor begins talking about his new business premises, and grumbles about how building regulations require him to install wheelchair access and an accessible bathroom. There we are, five wheelchair users and two amputees, listening to him complain about being forced to make building improvements that would enable any of us to access his offices.

Beyond The Break, by Darren Longbottom and Tim Rushby-Smith is published by Ebury Press in Australia and is available internationally as an eBook.

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The power of

branding

Every day we are bombarded with images from brands on social media, when shopping and as we watch the television, and it’s time for companies to inject inclusion into their marketing

t is estimated that the average person is exposed to around 4,000 to 10,000 adverts each day, but when few of these mirror who you are, it can make you feel excluded. By embedding inclusion into every aspect of a product from planning to marketing, brands can create a more accepting and diverse world. The need for diversity and inclusion from brands isn’t new, but the marketing landscape is starting to change as more companies take note of what consumers want to see. “We recognise not only the businessbuilding potential of ensuring our

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products delight all who use them: we believe that making them accessible to all is the right thing to do, and it enables us to pave the way towards a more equal world,” stresses Sumaira Latif, Procter and amble’s (P ) ﬁrst company accessibility leader working on products, packaging and communications. P&G are the parent company to 65 brands including household names like Pampers, Gillette, Always and Oral-B.

MOTIVATED Sumaira is 97 per cent blind and her personal experiences as a disabled consumer have motivated her to make the world a better place for the disabled

community. Beginning her career at P&G more than 20 years ago, Sumaira’s passion for the area has seen her work on inclusivity in many roles from IT to production. In the last few years, P&G introduced audio description to its advertising in response to Sumaira’s personal experiences. This has meant an increased reach of 30 million people in the UK, US and Spain alone. “As a disabled consumer, I’d always thought about inclusive design – I didn’t necessarily realise that it was a speciﬁc term, but I’d often thought to myself if only this company did X, it would be easier for me to do Y,” emphasises Sumaira. “Creating accessible products

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spotlight

isn’t just about creating growth for your business – it’s about giving disabled consumers more confidence and independence.” Increasing independence is a key benefit that comes from inclusive products and marketing. Different industries are starting to recognise the importance of inclusion, with companies like Asos conducting full accessibility audits on their website and making meaningful updates where necessary. Jo Butler, chief people officer at Asos, says: “We’re dedicated to driving disability inclusion across every aspect of our business, from how we recruit and support our people, to the models and influencers we select, and the accessibility of our app and website. Our purpose is to give customers the confidence to be whoever they want to be.”

REFLECT Gathering valuable input to create a more inclusive brand often starts internally or through asking people with lived experience what they would like to see: how could companies understand what disabled people need if they don’t work alongside them? “We want to be a brand that works for every fan – always inclusive, completely accessible and we recognise the only way we can get there is a workplace that fully reflects our

society,” explains Esther Verburg, executive vice president of sustainable business and innovation at Tommy Hilfiger. “Internally, we are working to create a culture of inclusion and openness that means all our associates feel that they belong. For the consumer and in the marketplace, it is about showing up by creating an inclusive brand experience. “We’re working to make more of our product categories available in inclusive versions, building on the great progress we’ve made so far with Tommy Hilfiger Adaptive range.” Tommy Hilfiger’s next steps as a brand will build on the success of the range which was created to make getting dressed easier for everyone and features disabled models in all marketing materials. “I think it’s important that brands design with people living with a disability in mind,” adds Esther. “For those working in fashion, look at your designs each season and see where you can make modifications to make dressing easier for those with limb differences or wheelchair users or with other disabilities.

“Don’t design what you think will be effective, invite people with disabilities to be part of the process and bring their experiences to the table. Ask what does and doesn’t work for them and how you can improve your designs. We all get dressed every day, so no one should be left out of the conversation.”

PERCEPTION Continuous, small steps can create a more inclusive brand that reflects society, helping marginalised communities feel seen. “We have an opportunity and a responsibility for the perceptions our advertising creates,” admits Sumaira. “From normalising taboos to challenging bias and combatting societal issues. “We’re always looking at how we can continue to advance inclusion – both within our organisation, and in wider society – and recognise that we’re on a journey. One of our key priorities within P&G is to nurture a culture of disability confidence.” Views from colleagues and consumers are a big influence on how P&G create and adapt products. “Feedback from the people who buy our products every single day plays a crucial role in driving our innovation,” reveals Sumaira. “For example, we’d received feedback from consumers that the caps of our Olay jars were difficult to open, so we gathered a team of experts, operators and consumers with impaired vision or impaired fine motor skills to help us make changes.” The company works with their People with Disability network which operates at a global and local level, providing a forum for disabled people, people with disabled dependents and allies to learn from one another. Through listening to the disabled community brands can start to build an accepting ethos, but a willingness to learn and change is the first step.

FOR MORE INFORMATION Find out more about how these brands are becoming more inclusive: Procter and Gamble (www.pg.co.uk), Asos (www.asos.com), Tommy Hilfiger (uk.tommy.com).

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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.

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.

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

MAINS WATER CONTROL AT YOUR FINGERTIPS The days of struggling with a stopcock tap underneath the kitchen sink are over! Surestop brings you an easy and effective way to protect your home from the risk of water damage.

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Product Roundup

Adapted products to provide independence and style if you are on the move or at home HEALTH

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TALKING THERMOMETER

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Featuring a large display, the talking thermometer shows results on a liquid crystal screen prior to speaking loudly and clearly. Accurate to within fractions of a degree, the thermometer can be used on the forehead or in the ear. When not in use, the thermometer will display the time and date.

Take control in your home with the Trådfri from Ikea, which can control every light source in your home individually and even create different lighting settings. Using an App from your phone, lights are easy to turn on, off, dim, alongside changing colours so you can turn your home smart.

Complete Care Shop, £24.99 exc VAT www.completecareshop.co.uk, 03330 160 000

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With new packaging and an all new shape, Attends Pull-Ons is back with an exciting upgrade. The pull-ons are soft, discreet pants that feel like underwear complete with multiple packs available. Designed to manage light, moderate and heavy leakages users can feel conﬁdent when wearing Attends Pull-Ons.

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LONG LENGTH BIB Bibble Plus, £13 www.bibbleplus.co.uk, 0115 849 0174

Complete with three adjustable nickel free press studs, the Penelope long length bib can provide conﬁdence when eating at home or in public. With an attractive pink, red and green ﬂoral pattern, each bib is made to order and fully machine washable so all stains will be removed and your daily clothing will stay intact.

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WHEELCHAIR WHEEL COVERS Izzy, £127 www.izzywheels.com

Show off your personality with wheelchair wheel covers from Izzy. Boasting a range of covers, the product is lightweight, waterproof and scratch proof complete with three velcro straps at the back of each to easily fasten the wheel covers directly to the spokes of the wheel of any manual wheelchair.

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here can you read exclusive interviews from Channel 4 presenter and motorsport driver Billy Monger, former rugby player and MND campaigner Doddie Weir, campaigner and activist Sinéad Burke or Hollyoaks actress Rhiannon Clements? Only in Enable Magazine, the UK’s most respected and valued disability and lifestyle publication. Every issue we cover topics pertinent to the disabled community, whether you have a physical, hidden, learning disability and/or mental health conditions, you are a paid or unpaid carer or medical professional. Last issue we looked at the importance of adapting your home and neighbourhood to meet your needs; spoke directly to campaigners taking the UK Government to court over discriminatory abortion laws around disability; investigated the need for support for the 13.6 million unpaid carers across

the UK; before speaking to Paralympian Will Bayley about the Tokyo 2020 Summer Paralympic Games. You can expect all this and much more in every issue of Enable Magazine. If you are a resident in the UK, or would like to send a subscription to a UK-based address, a member of the Enable Magazine team is happy to help. After you subscribe, you will receive the next issue of the magazine.

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September/October 2021

WHEN LIFE GIVES YOU LEMONS

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Requesting transport for all A transport system that works for the disabled community is better for everyone. But, without the correct measures in place, access to transport could be leaving a portion of the population isolated

ith people around the country trying to be more sustainable and the world reopening in the wake of a pandemic, good access to transport systems is imperative. Unfortunately, public transport often doesn’t meet the needs of the disabled community

NAVIGATE Currently, Network Rail proudly states that more than 200 stations across Britain are now step-free, accessible routes, but that accounts for less than 10 per cent of all train stations around the country, and this is just one example: from buses and trains to cycle lanes, this lack of access stretches across the board. Katie Pennick, campaigns lead at Transport for All (www.transportforall. org.uk), understands that access to transport is necessary, she explains: “We really fundamentally believe that disabled people should be able to navigate around and make their journeys with the same level of independence, ease, freedom and conﬁdence as everyone else.” Transport for All is a non-proﬁt organisation working to inform, educate and challenge the transport network in private and public sectors. “We are really trying to embed the social model of disability in the transport sector,”

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emphasises Katie. “You can’t understate it: it impacts every single other element of life.” An inaccessible transport system has left disabled people isolated and often excluded from the day-to-day activities that so many take for granted.

RUSHED As the UK responded to the coronavirus pandemic from March 2020, the transport industry had to scale back with multiple lockdowns leaving little demand for journeys not deemed essential. But the need for social distancing - on streets and on board - along with necessary quick decisions has meant Katie feels left behind. “There’s been a real fear that disabled people and our needs have been forgotten about by policymakers and by the transport industry,” admits atie. “That’s been really worrying and really difﬁcult to deal with. We’ve seen a lot of changes rolled out over the pandemic that we feel have been very kind of rushed through.” This included dramatic changes to streets that saw disabled parking bays restricted as pavements were widened.

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IMPACT A lack of consultation and a rise in harassment and hate crimes due to things like people being unable to wear face coverings and changes to assistance, mean people’s conﬁdence in travelling is lower than ever. “I’m really sad and worried to see the way progress with accessibility has stalled, what the pandemic has created is layered on top of a system that is already incredibly challenging,” reveals Katie. No support on trains in particular is something that Katie has experienced herself, often relying on staff to bring out manual boarding ramps on arrival. “I have certainly experienced so many times arriving somewhere and there’s no ramp to get me off the train and then I’m stuck, I’ve ended up in different cities because I haven’t been able to get off the train,” explains Katie. “I don’t think I will ever be able to put into words exactly how damaging an experience that is.

“We need a huge change, we need a fundamental shift in transport infrastructure to encourage people and build their conﬁdence up.”

SOLUTIONS For Katie and organisations like Transport for All, the ﬁrst step to better accessibility is staff training across the sector. “We would like to see disability equality training not just for customer-facing frontline staff, which obviously in itself is brilliant and makes a really big impact,” adds Katie. “But for senior staff in organisations in the transport sector, for policymakers and decision makers, really trying to embed accessibility and the social model of disability in these organisations so that strategic decisions are made. The disabled community’s needs have to be written into plans from day one. By engaging communities from planning we could see a better transport system for all.

Relieving travel anxiety with SEStran Public transport is essential for people to access jobs, services and social lives, and although many of the barriers identiﬁed by disabled people and non-disabled people in undertaking journeys are the same, they can have different impacts. Helping to relieve travel anxiety, the Thistle Assistance programme aims to make people feel conﬁdent when using all forms of public transport across Scotland. The programme is a key component of the transport strategy in Scotland, delivering on the Scottish Government’s ambition to have an inclusive and accessible transport system. In response to a need to improve door to door journeys for people with mobility challenges, the South East of Scotland Transport Partnership (SEStran) and Sentireal

(www.sentireal.com) have created a project to meet this challenge, supported by 1 0,000 worth of funding from Scottish Enterprise. “If we want people to make different travel choices, we must think more clearly about their whole journey, how each part of it connects, and how we can better integrate those parts,” explains councillor Gordon Edgar, chair of SEStran. “This applies to all citizens but is perhaps even more relevant to those members of our communities that have a disability.” Combining journey planning, wayﬁnding and disability awareness into one versatile platform, Thistle Assistance oyagAR will respond to passengers’ needs as identiﬁed by the Campaign for Better Transport. Tom Houston, chief executive of

Sentireal, is excited to be part of the solution helping vulnerable people gain independence in travel, he says: “Thistle Assistance oyagAR will be the first wayfinding application to consider the individual needs of the user and create a journey most suitable to their circumstances. We will be reaching out to charities and community groups to gain input and guidance as we move forward with development.” The new platform encapsulates the Thistle Assistance programme’s message of a little help goes a long way, helping people to pop to the shops, see friends, or attend essential appointments using public transport. To find out more visit www.thistleassistance.com

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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

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DISABILITY’S FIGHT FOR CLIMATE JUSTICE

Conversations around climate change are reaching a crescendo as the UK prepares to host the UN Climate Change Conference (COP26) in Glasgow. Mary Keogh, advocacy director at CBM Global, reveals why disabled voices need to be included Ahead of COP26, in what way does climate change impact the disabled community? Climate change and its impact affects every community, and the disabled community isn’t any different. People with disabilities need to be involved in the movement for climate justice. Depending on the country, there will be a different experience. In African countries, there is drought. Equally in the U , you have ﬂooding or cold and ice in winter and the extra costs that come with this effect people with disabilities and everyone else.

That is why we created the videos alongside the EDF (www.edf-feph.org). We also made the videos on Zoom, so they were accessible. Also, if you are taking being carbon conscious seriously then not travelling for interviews is even better. We had the opportunity to speak to activists all over the world who really clearly tell their stories. Why is it key that the voices of disabled people are heard and considered when discussing climate change? It is really important that everyone has their voice heard around climate change and persons with a disability are no different. What we ﬁnd in our work, sometimes the connection between climate and disability is not made by policy makers in climate. The UK Government have a real chance, especially as the UK is hosting COP26 this year, to lead the way in disability inclusion.

CBM Global created videos with the European Disability Forum (EDF) highlighting the lived experience of climate change from disabled people across the world. Why are these conversations important? There is an entire movement that is emerging. When we looked at the material and the videos being shared around the impact of climate change, there is very COP26 will little being shared from the take place from perspective of disabled 1 November 2021 people.

In regards to accessibility, why is providing information in different formats essential to get more disabled eo le ﬁ htin or climate ustice This is a really important point. The easy-to-read versions being spoken about, they are becoming more and more available but still not to the extent of being as inclusive as possible. All discussions around climate change can be quite technical, so the easy-to-read information and documents will need to be crystal clear so that people can be involved. For readers looking to learn more about climate change or who want to get involved with campaigning, what advice do you have for them? You’ve got groups such as Extinction Rebellion, they have a grassroots network at a community level which is a great place to start. Additionally, there are climate justice groups in your local neighbourhood alongside all of the leading disability organisations, they need to look at how to engage to ensure they are part of the discussion. You can make yourself aware.

FOR MORE INFORMATION

You can watch the Disability Inclusive Climate Justice videos on CBM Global’s website (cbm-global.org). Learn more about COP26 at, ukcop26.org or visit Extinction Rebellion, extinctionrebellion.uk

to 12 November 2021

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REVIEW

KIA SOUL EV Charge your knowledge of electric vehicles with columnist Alisdair Suttie as he explores the boldly styled and practical Kia Soul EV

INSIDE Kia’s interior design is among the best in the business right now, balancing attractive looks with easy functionality. The Soul exempliﬁes this with its digital dash and infotainment screens that are simple to read and use. There’s also plenty of storage and appealing design ﬂourishes lift the mostly black upholstery and trim colours. The driving position is excellent, with two-way adjustment for the steering wheel and electric seat movement as standard. Both front

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passengers have ample space and access through the doors is equally good. Step into the back and the Kia offers much more room than you get in a small hatch such as a Volkswagen Golf. The Soul’s boot is not as generous as the VW’s for outright space, but it’s well shaped and, with the parcel shelf removed, you can pack in a wheelchair. Under the boot ﬂoor is a storage area for the electric charging cables to keep them neatly out of the way when not needed.

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Kia provides four driving modes that you can swap between

The Kia Soul EV is available through Motability with an Advance Payment of £999. Find out more at www.motability.co.uk

EQUIPMENT The Kia Soul EV comes in a single trim for its initial £999 PIP Advance Payment, so you get alloy wheels, two-tone paint, rear privacy glass, adaptive cruise control, rear parking sensors, and automatic headlights and wipers. Inside, the Soul comes with leather upholstery, electrically adjusted front seats, heated steering wheel and front pews, and a 10.25-inch colour infotainment touchscreen with satellite navigation. This also works with the reversing camera, Bluetooth, and Apple CarPlay and Android Auto to connect with your smartphone. Kia also provides wireless phone charging and two USB ports for other devices. Safety in the Soul is taken care of by seven airbags, including a driver’s knee bag, as well as lane keep assistance. There’s also Forward Collision-Avoidance Assist to spot potential hazards and warn the driver, or perform an emergency stop if they don’t react in time.

DRIVING Unlike so many electric cars, the Kia Soul EV has a cushy, supple ride. Even though it has to deal with the weight of the Soul’s batteries, the suspension absorbs bumps and ridges with calm conﬁdence. It makes the Kia a very enjoyable, quiet car to drive in town or at higher speeds, and it handles nimbly too. The 201bhp electric motor and 64kWh battery bless the Soul with a surprising turn of speed, taking just 7.9 seconds to go from 0-60mph. That’s fun, but more relevant is it means you can pull out of junctions swiftly where some electric cars hesitate. Kia provides four driving modes that you can swap between using the paddle shifters behind the steering wheel. These vary the amount of regenerative braking the car uses to recycle energy into the battery as you slow. With the stronger settings, you can effectively drive Lively performance and the Soul just using the accelerator pedal to good range coupled with modulate speed, which soon becomes second comfort and equipment nature and very relaxing. Recharging the Soul is make the Soul EV very quicker than many s and the ia has an ofﬁcial tempting. range of up to 280 miles, and we easily saw 240 on a single charge.

SUMMARY

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THE FUTURE OF VIEWING In a pioneering – and much sought after – move, BT Sport broadcast the FA Disability Cup live with accessible viewing formats. The chief operating officer for BT Sport, Jamie Hindhaugh, spoke to Lorne Gillies about inclusive broadcasting As one of the leading broadcasters in the UK, what is BT hoping to do to improve the viewing experience for the disabled community? The challenges people face watching disability sport, they will also face watching the Premier League where, arguably, there are bigger audiences and people will feel very excluded because it doesn’t quite work for them. This is a huge opportunity for us and it puts us in the driving seat to learn and to be really clear as a responsible broadcaster that [accessible viewing] should be standard. We are looking at how we can use technology to enable people to come together, and for users to be able to access and enjoy the content individually to still be part of a wider conversation. We want [accessible viewing] to become standard for all live sport so that we are truly inclusive as a broadcaster. What we really should be doing is ensuring that all sport we show is accessible in this way.

n ul T ort ecame the ﬁrst channel to ever broadcast the annual FA Disability Cup live and fully accessible with audio description and BSL interpretations; why was this the right time for you? It felt like the right thing to do, as we have a sports network, to look at the best way to support disability sport, to make it visible and to be talking about it, showing it and giving it the same respect as we give any other coverage. I would hope that this isn’t the ﬁrst and only time we broadcast the Disability Cup – I would expect this to be a regular occurrence with BT. Also, the Disability Cup, taking into consideration accessibility, we are looking at how we focus on disability by being truly inclusive and representative of the challenges that some of the teams face in the competitions they are playing in. And audio description and commentary are also important – we are building on this. There should be no barriers in watching content.

Read our extended interview with Jamie on our website, www.enablemagazine.co.uk

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What more will BT Sport be doing internally to ensure the disabled community is represented? We are using the privilege of our position not to preach, but to make people understand that this is important and we believe it is important. Inclusion, it isn’t just about ethnicity, sexuality or gender; disability is really important to that. For example, all our studio signs have been changed to include braille, I want people to come into my organisation and not feel like they have to do something different. We are much more active now in giving opinions on initiatives such as Black Lives Matter. Disability is one of those key areas that, to be frank, we need to do more on both representing on air and also within our teams.

FOR MORE INFORMATION

Follow BT and BT Sport’s development of accessibility on their website, www.bt.com/sport

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Conversations around your care and what happens after you pass can quickly fall down the pecking order. However, ensuring your loved ones, and you, are protected legally is important for your health, finances and future care

PLANNING FOR YOUR FUTURE C

oming to terms with a life changing diagnosis such as dementia, or loss of capacity due to an accident leaving you needing support on decisions relating to your care or finances: life can continually throw curveballs our way, so planning ahead is important. There are many ways you and your loved ones can prepare for unexpected events, but, taking the time to have the conversation or fill out the what can seem like, daunting paperwork may not be at the top of your tasks. However, if the worst were to happen, a lasting power of attorney (LPA) can ensure everyone’s best interests are put first.

INSURANCE “It is like insurance put in place for your future,” explains Rachael Gooding, an associate solicitor at Slater and

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Gordon Lawyers. “A LPA means that if anything happens where you can no longer make decisions for yourself, someone you know and trust will be able to make those decisions for you. “It avoids any uncertainty looking for a next of kin or banks refusing to deal with someone who is not named on a court order. Once a LPA is put in place it is legal and binding and your attorneys can use it if or when needed in the future,” Rachael continues. In total, there are two types of power of attorney. An ordinary power of attorney is best suited if you want someone to look after your ﬁnances for a short time and a LPA which can help to cover property and ﬁnancial affairs or health and welfare. Jamal Shakespeare, who works alongside Scope on their helpline,

adds: “It is important to have a PA in place as you decide who acts on your behalf, how they can act and what they can do this makes the PA much more personal.” Most importantly, a LPA must be registered before it can be ofﬁcially used, so it is important to consider who you would want to nominate this can be anyone you trust to act on your behalf making decisions as if they were you.

CAPACITY We never know what is around the corner, thus having a LPA registered in advance of illness, injury or losing mental capacity is imperative. If you do not have a LPA registered in time, then your nominated person will be blocked when trying to sort your ﬁnancial and medical affairs. Rachael explains: “Relatives can only go so far. If you have to deal with

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NOMINATED

a mortgage or pension provider, they are unlikely to deal with you if you don’t have an authority to act. You might be trying to deal with someone’s property and you won’t be spoken to because you don’t have authority. “A family member might be listed engaged by medical professionals or social services, but any thoughts they are asked to give will only be input. Ultimately, social services and medical professionals will still be involved with making the decisions. If you hold LPA for someone, you can make decisions as if you were that person.” It is important to register a LPA when you are still able to make decisions independently, as this is a legal document that should have your best interests at heart. As it can take several months for the legal process to be veriﬁed and your documents to be registered in the fﬁce of the Public Guardian, acting quickly is essential.

“It is like insurance put in place for your future” “You don’t know how fast you will deteriorate, these things can happen really quickly and it can be really stressful doing this paperwork at a time where you have got a lot going on,” Rachael emphasises. “If the LPA is already signed and registered, just waiting to be used if need be, you don’t have to worry. “I would recommend people do this sooner rather than later. Have that conversation with your attorney, not least to make sure your attorney is happy to act in this capacity.”

Thinking ahead to a time when you might not be able to live with full autonomy, concerns for what will happen to your home, finances and family if you become ill or receive a life-altering diagnosis can certainly lead to hard and emotional conversations. Acting ahead is beneficial and solicitors are on hand to help guide you through the process so if the worst were to happen everyone is covered. “Having conversations about PA are beneficial because it allows you to start thinking about how you want your affairs handled, who you wish to handle your affairs, and highlight what a spouse and family can and cannot do,” explains Jamal “It allows everyone to know why you are thinking about the LPA, everyone is aware of your reason to setting up a LPA.” Rachael also reiterates that during the process of creating your LPA, solicitors will walk you through the process and ensure that everything discussed is clear, and that you have a full understanding and knowledge of what the LPA entails. You can amend your LPA at any time to add or remove an attorney, but when adding a new person you will be required to create a new registration – which can take time – so discussing all your options is imperative. “People do really have to pluck up the courage to talk about LPAs because it can be an emotional topic,” empathises Rachael. “I do have to ask hard questions at the time, but once it is done you don’t need to think about it again – you can put it in a drawer and relax knowing it is sorted – you will feel better when it is done.”

FOR MORE INFORMATION Further advice on lasting power of attorney is available from Slater and Gordon (www.slatergordon.co.uk), Scope (www.scope.org.uk) Helpline 0808 800 3333, and Citizens Advice (www.citizensadvice.org.uk).

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Are you suffering from CRPS following an accident? CRPS can be life-changing. Which is why Brian Barr Solicitors work tirelessly to secure our clients the compensation they deserve. Brian Barr Solicitors represented a former health care assistant and mother of five, who twisted her ankle when she tripped over an unmarked and unlit step and tragically ended up with a below-knee amputation. With an eventual diagnosis of Complex Regional Pain Syndrome (CRPS), she also suffered from fatigue and constipation and fibromyalgia, all of which resulted in a major depressive disorder. Mid claim, a significant interim payment was obtained to allow for the purchase and renovation of a home suitable for her condition, followed by a final overall settlement of £4million which will assist allowing her to live the best possible life alongside her condition.

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In conversation with

THE MINSITER FOR DISABLED PEOPLE Aiming to get more disabled people into employment and provide increased support for those accessing benefits, could we be on the cusp of positive change for the disabled community? Minister for Disabled People, Health and Work, Justin Tomlinson, speaks to Enable Coming out of the pandemic, how is the UK Government’s COVID response taking the disabled community into consideration? As a government, our priority is that disabled people are at the forefront of our recovery. We have delivered an ambitious National Strategy for Disabled People (published on 28 July 2021), which is a cross-government plan for the future removing barriers in all spheres of life and creating a fully inclusive society. It will be underpinned by disabled people’s direct insight and lived experience, and expert guidance from charities, stakeholders and disabled people’s organisations. In the last year, in response to the pandemic, we brought changes to improve our support for disabled people to make it ﬂexible and easier to access. For example, Access to Work provides grants up to £62,900 to keep a job accessible for disabled people and that is now available to people working from home. For people who have recently become unpaid carers for disabled loved ones due to the pandemic, how does the UK Government plan to support them? Carers do an amazing job, looking after some of the most vulnerable people in

our communities, and this has never been more evident than during the pandemic. To help with the additional pressure carers have faced, we provided £152,000 funding to extend the Carer’s UK information and advice service, and carers can continue to claim Carer’s Allowance if they have a temporary break in caring because they or the person they care for has coronavirus or have to isolate because of it. How is the UK Government working to get more disabled people into long-term, meaningful, paid employment? We have increased the number of our specialist Disability Employment Advisors in Jobcentres to ensure better support to disabled people and those with long-term health conditions. Employers also need to be supported and encouraged to be better at managing health issues to enable retention in the workplace. Our response to the 2019 consultation, Health is Everyone’s Business (HIEB), published recently, contained proposals to do this.

What more do you believe needs to be done to encourage more businesses to actively employ disabled people? Employers are increasingly recognising the benefits of having a diverse workforce to their business. I agree, though, there is still more to be done to break down barriers to employment. ur Disability onfident Scheme encourages employers to think differently about disability and to take positive action to improve how they attract, recruit, retain and develop disabled employees. It promotes the wealth of skills and talents disabled people can bring to an organisation, and encourages employers to ensure they are not missing out on this untapped pool of talent. We have now reached over 20,000 employer sign-ups with over 11 million employees covered by Disability onfident employers, and we will continue to build on this achievement. FOR MORE INFORMATION

Follow updates from the Department of Work and Pensions (www.gov.uk) on social media @DWP and the Minister @JustinTomlinson

Read our exclusive interview with the Minister referencing the Health and Disability Green Paper online, www.enablemagazine.co.uk

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Understanding

your

money From benefits to budgets, taking control of your finances can help relieve stress, ensure you don’t build up debt and help you live a happy life

anaging your money can feel overwhelming, but taking the ﬁrst steps to ﬁnancial control is easier than you might think. Staying informed and seeking support from reliable, reputable organisations can help.

WELFARE In the wake of the coronavirus pandemic, and as new measures that aim to tackle inequality are announced by the UK Government in the form of the much-anticipated National Disability Strategy, staying updated on changes to the welfare system is essential. Beneﬁts application processes have adapted over the last 1 months and there has also been changes to the support available. An additional 20 a week was added for those receiving Universal redit, the need for face-toface assessments was reduced. Along with adjustments came challenges as phone lines were often backed up, creating long waits to access advice. Now, the system is changing again with some welcome changes to assessments staying in place, but others that could have a damaging effect on families. From late September, the

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20 uplift to Universal redit will be removed, leaving many claimants in financial difficulty. nce this happens, a household where two adults are claiming Universal redit will be nearly 1 0 worse off a month. A poll by Save the hildren of more than 1,000 benefits claimants found that almost half of people receiving Universal redit believe they will no longer be able to live on the benefit, with another 1 per cent unsure if they will be able to manage this winter.

TAKING CONTROL harities continue to fight ministers’ decision to remove the uplift, but if you are concerned about this cut or other aspects of your finances, there is support available. Taking control of your money can seem daunting, especially as autumn and winter approach, but the right support can help ease stress that could exacerbate symptoms of a disability. Money elper (www.moneyhelper. org.uk) brings together money and pensions information from three trusted financial guidance providers: these are the Money Advice Service (www.moneyadviceservice.org.uk),

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Pension Wise (www.pensionwise.gov. uk) and The Pensions Advisory Service (www.pensionsadvisoryservice.org.uk). The website has helpful guides, tools and calculators and a helpline, covering a wide-range of money queries. Guides include choosing a bank account for your benefit payments, how to budget and how to save. Mencap (www.mencap.org.uk) have produced easy-read guides about money and benefits for people with a learning disability along with advice on helping people to manage their money for carers and loved ones. With information on grants and other sources of money, dealing with debt, banking and insurance and more, the Scope website (www.scope.org.uk) is a great resource for financial advice if you want to do your own research around money.

ADVOCACY These resources can help you understand your money, but additional support like a ﬁnancial advocacy service can be a powerful tool.

Financial advocacy services provide a third party to help you manage your money the way that you want. They can help with things like account management, benefits and money checks. These services aren’t just for people who don’t have additional support from those around them, they can be helpful if carers or family members are unsure or uncomfortable managing someone else’s finances. “I think it is important for people and their carers because the application and management of state benefits and banking is a complex area which is constantly changing, and therefore it is important that people are receiving the money they are entitled to in a timely way,” emphasises Claire Willis, a financial advocate at D S (www. dosh.org) who support people with a learning disability with money management. “Being an advocate, I can speak up for the people I support when they are not able to, and when they wish me to do so on their behalf. This enables people to always be at the centre of decision making about their money

and their choices, and aspirations are heard and acknowledged.” Access to tailored support services and impartial information is essential in ﬁnding the right way to manage your ﬁnances and this has become more prevalent during the pandemic when many disabled people were cut off from their community because they were shielding, or because of digital exclusion. “ ne of the most important implications and consequences of the coronavirus pandemic has been access to spending on things that are important to individuals, particularly if a person does not have access to online shopping or has a local bank account and or bank card,” explains Claire. “As restrictions begin to ease, the people I support want to spend the money they have saved to have some fun and excitement, so now budgeting and money planning is very important.”

BUDGET Creating a budget that works for your income and lifestyle can sometimes mean not missing out when an exciting opportunity arises. The first step to creating a successful budget is understanding what your income and outgoings are. Your income is any money you receive, and outgoings can include rent or mortgage payments, bills, care and equipment costs, and the cost of things like food and transport. Budget planners, available online from Money elper and the Money Advice Service, are an easy way to take this step. These help you think about all aspects of your spending and saving, and any costs you could cut back on to improve your finances. They also come with personalised tips and the chance to speak with an expert if you feel this is necessary. Whether you already understand your finances or are unsure where to start, keeping updated with the latest welfare developments and how you use your money is a positive move.

FOR MORE INFORMATION o ﬁnd out more a out hat ﬁnancial support ou could e entitled to, isit www.gov.uk

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Are you or someone you know feeling overwhelmed by requests for donations? Stop unwanted contact from charities today. Use the FPS.

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Pension protection Being financially secure is essential throughout our lifetime, but no more so than when we reach retirement age. How can you ensure you get the most out of your pension and avoid fraudulent scams?

ensions come in different formats and can be claimed at varying ages, depending on where you have worked and what you are entitled to. For everyone who reaches State Pension age, you will be eligible for the new State Pension, if you are a woman born on or after 6 April 1953 and a man born on or after 6 April 1951, and you have at least a decade of National Insurance (NI) contributions. At present the current full rate of the new State Pension is £179.60 per week, and the calculation for your State Pension will take into consideration what you have already incurred in NI contributions.

ADDITION However, it is important to know that if you are disabled and have been unable to work throughout your life or you have been an unpaid carer who has not made any NI contributions, you are still eligible for some income once you reach pension age. “For people who are unable to work or cannot work due to caring responsibilities, you can get credits towards building your pension,” explains Sally West, policy manager for Age UK. “This gets paid once you get to pension age and not before. “If you don’t have very much in the way of a pension, there are some additional beneﬁts that you may be

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entitled to and the Age UK Helpline (0800 678 1602) is there to help,” Sally adds. “There is a range of options for you to help maximise your retirement fund if you have minimal pension savings or you have been fortunate.” If you are a carer, and this has meant you are unable to work, this could also impact your NI. However, caring for a loved one for at least 20 hours per week could mean you are eligible for Carers Credit to ensure you continue to maintain your NI. People currently receiving Carer’s Allowance will automatically be entitled to receive Carer’s Credit. The Carer’s Credit has been established to help people bridge gaps in their NI to help your state pension pot. Sally continues: “For everyone, whether you are disabled or not, it is important to do anything that you can during your working life to build up as much as you can for your retirement and make the most of your later years.” But, most importantly it is essential to know that you are not alone when claiming or requesting information on how to make your pension meet your needs. And this support is also available to ensure your money is safe.

“For people who are unable to work or cannot work due to caring responsibilities, you can get credits towards your pension” FRAUD FREE Protecting your money is essential, but unfortunately, there are many clever and sophisticated scams in place which can catch people out. Falling victim to a scam is nothing to be ashamed of as the scams – from telephone to email or in person – can be convincing and, at times, forceful. “Pension scams are a real problem, scams are an issue in all aspects of ﬁnance. Unfortunately, there is always fraudsters and scammers trying to make people part with their money,” Sally sympathises. And pension scams are on the increase. Being aware of methods that scammers use to con people can help you to protect your pension and hard-earned savings. Sally advises: “The most important thing is, if someone contacts you out of the blue and you were not expecting it, be really, really aware that this could be a scammer. “You should never receive a cold call or email or text relating to your pension. Even via email, if you don’t know who the address is and you know that you haven’t asked someone to contact you, be really careful who you engage with.”

help protect yourself from scams including: rejecting unexpected offers; ensure you are working with people registered with FCA, you can call the helpline on 0800 111 6768 if you want to check the authentication of a business. Additionally, don’t be pressured or rushed into making a rash decision and always get impartial information or advice prior to altering your pension agreements when approached. Sally explains: “When looking for advice or information on your pension don’t go to the person who has contacted you out of the blue. Check that any company offering support and advice is regulated by the FCA. Also, be aware if people are offering you high returns or innovative overseas investments – if it sounds too good to be true, it usually is.” Further information and advice on what you can do to not only ensure you are not being scammed, but to get the most out of your pension, is available from a range of pension speciﬁc services. Pension Wise from Money Helper (www. moneyhelper.org.uk), Pension Help (pensionhelp.co.uk) and Age UK can give you the right assistance. In regards to fraud, Sally adds: “They are very good at what they do, which is defrauding people. The scams are very convincing, so be wary of who you are giving out private information to.” From understanding how much money is available in your pension to ensuring your pension income is safe can place unnecessary stress on your golden years. By turning to services that can provide free, impartial advice, you can ensure that your pension will be protected and prosperous now and when you need it in the future.

TOP TIPS The Financial Conduct Authority (FCA) is actively working to help end pensions scams, noting that they can be hard to spot. There are four steps that can be taken to

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FOR MORE INFORMATION Stay on top of your pension with information available from Age UK (www.ageuk.org.uk) and the UK Government (www.yourpension.gov.uk).

Disability Summit ENABLE full page AD (print) aw.pdf

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ART Now, Accenture has launched a global and industry-first tool: the Adjustment Request Tool (ART). The process behind ART is designed to enable people who seek an adjustment to make their request with ease. A dedicated team at the backend of the tool works to solve the request with speed. The adjustments range from assistive technologies to web accessibility, workplace accessibility, HR adjustments and more. The tool is a streamlined, agile online platform, supported by a new process to ensure a quick, efficient, and people-centric approach to providing accommodations, all without compromising on the important personal touch in finding the right solution.

SOLUTION

A GLOBAL ADJUSTMENT With a new tool, Accenture will allow disabled people to request workplace adjustments with ease

ultinational company Accenture has always strived to provide a welcoming environment that is supportive for employees, but with a new tool the company is aiming to remove stress from the process of applying for workplace adjustments.

PROGRESS Committed to providing an accessible, barrier-free workplace that supports people with disabilities, Accenture’s attentiveness stems from the top. The company’s chief executive ofﬁcer, Julie Sweet, is a vocal champion for the disabled community and believes inclusivity should be at the top of the agenda.

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“To make progress in disability inclusion, companies must treat it as a business priority with goals, plans, measurement, and accountability,” explains Julie. “It has never been more urgent for businesses to lead change on disability inclusion - and we can only succeed in making progress if we work together.” Accenture’s goal is to build a culture that ensures disabled employees are fully included and engaged. For the company, this means embedding digital accessibility skills, practices, and governance across the business life cycle, from sourcing to the work they deliver to clients.

Due to the wide-ranging spectrum of disabilities, an adjustment that works for one person may not meet the needs of someone else. After a request is made, a case manager will explore all options and adapt as needed to identify a solution. Adjustments can be made for people with a range of disabilities including physical, hidden and/or learning disabilities. The ART has a prominent position on Accenture’s internal portal, ensuring it is easily accessible, and it provides notiﬁcations to users at every stage to enhance their experience. When a request is submitted, an internal team of case managers with extensive training on disability accommodations and disability etiquette co-ordinate the full process, with measures adapted by country. The new tool ﬁrst went live during 2019 in Argentina, Brazil and the Philippines and will launch in the United Kingdom and Ireland before the end of 2021. FOR MORE INFORMATION

Accenture’s global research, Enabling Change Getting to Equal 2020: Disability Inclusion, shows how companies that fully include employees with disabilities grow faster than their peers. Read more at www.accenture.com

Support to work in the way that’s right for you Flexible working Work that makes a difference

The IPO is an inclusive employer. We are building a great place to work where everyone is confident being themselves. Visit Civil Service Jobs and search for the Intellectual Property Office.

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NHS Lothian Opportunities Over 100 career paths – one employer We recognise the value that everyone brings to our organisation. Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We have a wide range of jobs at entry and qualified level and offer great opportunities such as DFN Project SEARCH a programme for young people with disabilities – and much more. Further information on NHS Lothian initiatives; www.careers.nhslothian.scot workforce-development email: careersforall@nhslothian.scot.nhs.uk vacancies: https://apply.jobs.scot.nhs.uk @NHS_Lothian @yourNHSLfuture

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The power of training

Helping people with a learning disability or autism kickstart their career, Project SEARCH is an innovative programme providing work experience, job coaching and employability skills training. For Colin McGill, Project SEARCH saw him become an award winner

here is no denying the unprecedented service, dedication and commitment everyone from the NHS has showcased during some of the most challenging months in its history. Alongside supporting society with their healthcare needs, the NHS is also a prominent provider of employment for people with a learning disability or autism. Coming out of school and college, Colin McGill from West Lothian, Scotland found transitioning into the workplace challenging and struggled to gain employment. After spending three years on beneﬁts, searching and applying for jobs without success, Colin applied to West Lothian Project SEARCH (WLPS).

COURSE Project SEARCH is a course for young people based in Lothian aged 16 to 29 who have a learning disability or autism. The programme is a partnership between council, college, supported employment services and the NHS. Project SEARCH sees people complete three work placements during a oneyear academic programme. In 2019, Colin successfully gained a place on the employability programme, completing two internships in the portering and stores departments within St John’s Hospital, Livingston. Colin sought to develop his skills, proactively learning new tasks and continuing to build on his selfconﬁdence. As he developed these skills, the portering manager recognised Colin as being someone they would want as a member of staff. Colin applied for an advertised position in the department, completed the competitive selection process and was successful in his interview for a full-time, permanent porter role.

RECOGNISED Just as the pandemic began in March 2020, Colin started his full-time role as a porter. Like many who work for the NHS, Colin made the hard decision of moving out of his family home to live in his father’s house which was closer to St John’s Hospital. During the pandemic, Colin actively sought to understand both COVID-19 and spoke to WLPS staff regarding PPE, prevention procedures and NHS Lothian policies. To celebrate Colin’s dedication to his position and the responsibilities that come with the portering role, in 2020 Colin was awarded the Young Achiever Award, part of the prestigious Scottish Health Awards which recognise staff throughout NHS Scotland.

The NHS is a prominent provider of employment “When I found out that I won the Young Achiever’s Award, I was very surprised,” enthuses Colin. “I never imagined I would win but I was very grateful to be given the award. I also want to thank the portering supervisor and the WLPS team for nominating me for the award.” Recognising excellent judgement, initiative and drive and outstanding achievement as part of working life, Colin also credits his colleagues and being trained on a variety of different tasks for helping to reach new heights in his career. With Project S AR , a fulﬁlling career is closer than you might think.

FOR MORE INFORMATION

Learn more about Project SEARCH by visiting NHS Lothian (https://careers. nhslothian.scot/) and following on social media, @NHS_Lothian @YourNHSLFuture on Twitter or @lothian.nhs on Facebook. Colin with his award enablemagazine.co.uk

big

ACCESSING

BUSINESS The desire to work and thrive in a career is high in the disabled community, but barriers still exist in the workplace from the recruitment process through to promotion opportunities. Big businesses have the power to break these down

ess than 54 per cent of disabled people are currently in work in the UK, with an unemployment rate of 8.4 per cent. Disabled people are ready to embrace opportunities, but currently, many businesses aren’t. A job board for employers who are enlightened enough to see disabled people as a source of talent, Evenbreak is connecting disabled candidates to companies that care. Founder Jane Hatton understands the importance of access and inclusion from recruitment through to daily, on-the-job tasks. “Employing disabled people within the mix of diversity is hugely beneﬁcial to the bottom line, to their reputation and being seen as an inclusive employer,” explains Jane.

INTERSECTIONALITY As in many sectors, disability is often an afterthought when discussing inclusion and diversity in business settings.

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“Often businesses will look at diversity and say yeah, we’ve got this on race and we’ve got this on gender and those are really important areas, but disability kind of cuts across all of that,” says Jane. “You can be male or female and disabled, you can be gay and disabled, you can be black or white and disabled, so for us it’s about intersectionality.” When companies use job boards like Evenbreak, they are effectively promoting their commitment to disability inclusion.

PREMIUM “We say disabled candidates are premium candidates because as well as having the same diversity of skills and talents, disabled people also have to navigate around barriers that others don’t, so that means we develop creative problemsolving skills, tenacity and project management skills,” adds Jane.

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Creating an open, trusting atmosphere in the workplace can aid progress, Jane explains: “It’s really important for an organisation to create a culture where disability can be talked about in the same way we talk about the weather or what was on telly last night. Change often starts from the top and organisations like Evenbreak and The Valuable 500 (www.thevaluable500. com) are already holding big businesses to account. Some companies, including Unilever and KPMG, are listening and ready to improve.

VISIBLE At Unilever (www.unilever.com), communications and corporate affairs director Yvette Edwards is helping to inﬂuence meaningful change while leading the company’s disability network in the UK. With over 400 brands, Unilever is one of the world’s largest consumer goods companies powered by 149,000 employees, and has products present

in an estimated 98 per cent of UK households. “We want to have access to the best talent and we know that there are barriers for people with disabilities for coming into work, so we want to remove those as much as we can,” explains Yvette. Unilever understands the effect exclusion could have on the bottom line, but the company is also passionate about reflecting the consumers it serves and that starts with listening to employees. “As soon as you have people in the room who all think the same thing, that’s a barrier to making great decisions: the teams that perform best are the teams that bring different perspectives,” enthuses Yvette. By 202 , Unilever want five per cent of their global workforce to be made up of people with disabilities: a far cry from the 15 per cent of the world’s population that is disabled, but a first step. “We probably could be doing a better job and so we’re trying to,” admits Yvette. “My ambition is to push that number higher, but I think the target is important because it signals that this is something we are taking seriously: it’s not just words. “Part of the challenge is to get meaningful data so you understand where you are now and then you can measure your progress, that’s one of the things we are looking at now.” This work includes liaising with the company’s global network, looking at physical and digital accessibility, upskilling managers, and putting policies in place to ensure recruitment processes are inclusive.

TALENT Attracting the best talent to power business is a key theme when discussing the beneﬁts of inclusive employment, but it has to be underpinned by real action. Offering audit, tax and advisory services in 146 countries and territories around the world, KPMG (www.kpmg.com) is already active in publishing disability representation and disability pay gap ﬁgures. “One of KPMG’s key ambitions is to be a magnet for the most talented people. A focus on inclusion, diversity

and social equality (IDSE) plays a fundamental role in achieving this,” stresses Mark Russell, IDSE manager at KPMG UK. In 201 , PM was the first of the so-called big four professional services firms to publish comprehensive targets on inclusion and diversity, including targets on disability. When companies of this influence act, it starts to make an example of those who don’t put disability inclusion on the employment agenda. “Our latest annual review showed that our disability representation firmwide was .1 per cent,” reveals Mark. “While the pay gap is not where we want it to be (with a 10 per cent mean and median gap), providing this level of transparency allows us to put a plan in place to address it.” Mark hopes the company’s actions can create a change bigger than KPMG. “I would like to see businesses really explore the opportunity employing those with a disability presents,” he reveals. Mark also stresses the importance of senior players in business being open to conversation, to sometimes getting it wrong and learning, and to sharing their own experiences. “As someone with a disability myself, I know only too well how difficult it can be adapting and coming to terms with such a change in your life,” adds Mark. “ ou need to find the confidence to speak up and talk about your own experience which is not always easy, but it creates a culture where disability is not feared or seen as a negative. Instead, disability must be seen as an opportunity, a diverse perspective or ability, which can make a huge difference if harnessed correctly.”

FOR MORE INFORMATION Search for vacancies from inclusive employers through Evenbreak (www.evenbreak.co.uk) o ﬁnd out more a out emplo ers putting di ersit on the agenda, isit usiness isa ilit orum (www.businessdisabilityforum.org.uk) or the go ernment s isa ilit onﬁdent cheme (www.gov.uk).

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Queen Alexandra College

WHEELCHAIR BASKETBALL ACADEMY

new and exciting fo!r 2021/22

Photograph by David Dunbar Purple Swan Photography

Queen Alexandra College (QAC) are working in collaboration with University of Worcester and The Albion Foundation to deliver a unique and ground breaking elite Wheelchair Basketball sport performance programme. The programme is specifically designed for ambitious young sports people aged 16-24 years who use a manual wheelchair and are eligible under the International Wheelchair Basketball Association (IWBF) classification criteria.

For more details please contact: 0121 428 5050 or info@qac.ac.uk

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LEADING THE VALUABLE Diversity should be at the heart of all businesses, and one organisation is helping to build a more inclusive future. Chief executive at The Valuable 500, Joanna McGrath, reveals what’s next in the global movement

urrently, businesses across the world could be losing out on the $8trillion spending power of disabled people and their networks because disability inclusion isn’t at the top of their agenda. In 2019 Caroline Casey, founder of The Valuable 500, began her mission to hold big businesses to account and help them on the road to a more inclusive future. The organisation now represents 500 companies with 20 million employees in 36 countries worldwide, aiding them in their progression. Chief executive at The Valuable 500, Joanna McGrath, is at the helm of this change.

THE 500 The campaign focuses on national and multinational private sector corporations, where chief executive ofﬁcers ( s) are able to insight real change from the top. “There’s a lot of companies out there doing brilliant and interesting work, but doing it on their own,” explains Joanna. “The Valuable 500 is all about working together to shift the dial.” When talking about inclusion and diversity, disability is often bottom of the list because it is deemed complicated and challenging. Using a collaborative approach, The Valuable 500 wants to change this mindset. “The ask was for companies to commit to one thing and deliver on that one thing,” says Joanna. “It has almost been like a two-year focus group or daily research task hearing all sorts of questions and challenges and what the barriers were for companies to make progress.”

Joanna McGrath

PHASE TWO The organisation is now entering phase two, focussing on six pillars that are key to removing barriers and creating a more inclusive future: c-suite; customer; culture; research; reporting; representation. “There’s deﬁnitely a huge gap in information, how can we get better if we don’t know where we are at the moment?” asks Joanna. Across the pillars, areas like public disclosure of disability data, the disability pay gap, barriers to employment for disabled people, website accessibility and more will be the focus. “We want The Valuable 500 to be this place of innovation,” emphasises Joanna. “We decided to pick one or two companies to work with in each pillar to help solve these challenges and to create tools everybody can use and share.

RESEARCH This intention will see signatories of The Valuable 500 like Google, Salesforce, Mahindra and Deloitte helping to power the research underpinning each pillar.

Throughout the next three years, this research will form the basis of a new hub, available for any company or organisation looking to become more inclusive and accessible. “It will be a place for companies to share the work they’re doing and the challenges that they have so that we’ve got this kind of brilliant, ongoing, living, breathing place where the community can connect,” enthuses Joanna. “It feels like an exciting time for being more inclusive of everybody and we are here to start the conversation and make sure that people with disabilities are deﬁnitely included in that.” Highlighting the value of the disability community worldwide, The Valuable 500 is forging a path for a new, more inclusive type of business in the future.

FOR MORE INFORMATION

Find out more about The Valuable 500 and phase two of the campaign at www.thevaluable500.com

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enable voices

From stand up and creating an accessible travel show to presenting at the Tokyo 2020 Paralympic Games, Rosie Jones has an impressive CV. Now, the comedian is adding author to her list of credentials

rowing up, most children dream about becoming princesses or pop stars, but for one six-year-old, the goal was to become a children’s author. Fast forward 25 years and comedian and presenter Rosie Jones has just released her ﬁrst book: The Ama ing die ckhart. Rosie was always looking for a new page turner but as in many forms of media, something was missing: disability representation. “ ooking back now, I never read anything where the main character was disabled,” remembers Rosie. “I wanted to live out my dream to become a children’s author and write a character who was brilliant, clever and stubborn like every 11-year-old is, she just happens to also have cerebral palsy.”

PERSONALITY

PROGRESS

Representation is at the heart of Rosie’s debut book, but the way disability is portrayed was a key part of her writing process. “It’s so important for disabled people to read about other disabled people so they can go oh my god that’s like me, I can be seen’, but actually, we need to remember that disability is not a personality type,” emphasises Rosie. “A disabled person might read Edie and go well she isn’t like me at all, and that’s ok too. “It’s also very important for children who are not disabled to read it, to really understand that just because a person is disabled or a little bit different, it doesn’t mean that they’re alien or they’re someone to be scared of.”

For Rosie, it was important to make Edie’s story engaging out with her disability, she says: “I really hope that any child can read die and like her as a character, and really, when you’re ten pages in you forget she’s disabled because she’s like any other 11-yearold.” Books like this one signal a shift in children’s literature, but it is only the start. “It needs to be more than just die,” stresses Rosie. “I would love to live in a world where we have 100 different books about 100 different characters who have 100 different disabilities. “We need to be writing do ens, hundreds of books about disability to really represent the country and the world we’re living in today.” Now that the world has met Edie, Rosie is already working on her next book: get ready to follow die on her next adventure. The Amazing Edie Eckhart is available to purchase now.

ILLUSTRAT ION: NAT ALIE SMIL LIE

nter die ckhart, the normal, nervous, excited pre-teen about to embark on her first year at secondary school. “She has the normal worries that anyone that age would have: she’s unsure about making friends and then when she gets to school, she’s worried that everyone has a boyfriend or girlfriend,” explains Rosie. “The book is really her first term at secondary school figuring out what group she belongs in and also, where does she add disability into the mix.”

REPRESENTATION

THE AMAZING

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PHOTO: AEMEN SUKKAR

ROSIE JONES

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