Talking Sense Autumn/Winter 2022

This is your Autumn/Winter 2022 edition of Talking Sense. You’ll find key stories here, covering:

  • Pushing past the barriers of exclusion.
  • The price of disability in a cost of living crisis.
  • Life as a deafblind drag king.
The front cover of this issue of Talking Sens shows a young black man with his arm out in front of him, fingers outreached.
The front cover of this issue, featuring Adam. His story on breaking barriers is shared within.

In this issue…

Letter from the editor: Preparing for the days ahead

These words, from Janine Laverty, capture so well what this issue of Talking Sense is about:

“Life really is as unpredictable as the weather; you never know what you are going to wake up to or even if you are prepared for the day ahead. But that doesn’t mean that the harshest conditions can’t be beautiful.”

Janine Laverty

For Janine, the harsh conditions she refers to are both the complexities of raising a disabled son, and the driving snow in which she completed her incredible Sense fundraising challenge.

I hope to take something of her strength with me into the coming months. Lots of us are facing unpredictable conditions this winter, with the threat of cold and snow feeling more severe than in other years.

Over the following pages, we look at the cost of living crisis and the effects this is having on you and your loved ones. You’ll also find out how Sense can help you prepare for the days ahead, with our campaigns and ongoing support.

There may not be clear solutions to overcoming these barriers, but we hope Talking Sense will remind you that you’re part of a warm, caring community. You’re not alone. In this issue, we’ve also got a lot to celebrate! Thrive Festival came back in full sparkling style and our Birmingham centre threw open its doors for a Commonwealth Games event like no other. We reflect on the strength that can be drawn from our sense of identity, with artists who helped us mark this year’s Pride and Black History Month.

Each of the stories featured in this issue show people breaking through barriers, finding ways to push forward and achieve their potential. We hope that reading this inspires you to do the same, and to help those around you to break barriers and find beauty, even in the harshest conditions.

– Beatrix Allen, Editor

A message from Richard Kramer, Chief Executive of Sense and Sense International

It was with great sadness that Sense received the news of the passing of Her Majesty, The Queen. On behalf of Sense and Sense International, we have written to our Patron, HRH the Princess Royal, and the Royal family to express our deepest condolences for their loss.

Our campaign: Break the barrier

Throughout our lives, many of us will find ourselves pushing against barriers imposed by others, or by the world around us. For some, these are just temporary challenges; they have the support to overcome them. For others, the scale of these barriers can be overwhelming, disabling even.

Disabled people are more likely to be held back by physical, social and communication barriers. They’re blocked from being able to take part in life.

Often, the barriers holding people back aren’t visible. Almost two thirds of the 14.1 million disabled people living in the UK are chronically lonely. Their isolation and exclusion aren’t easily spotted.

It doesn’t have to be this way. Together, we can break down communication barriers that lead to this devastating exclusion; remove the physical barriers that can stop disabled people from taking part; undo the social barriers that inform the stereotypes that hold them back.

Together we can do everything in our power to break the barrier. Add your name to the pledge and get your special pin badge.

Adam’s story: No achievement is too small

Adam has learning disabilities; he understands how barriers interfere with life and our sense of self. In his journey to defy these limitations, Adam is helping other disabled people break their own barriers every day.

I’ve faced barriers all my life because of my disability. I can’t read or write things. When I try to explain that to people, I get shut down. They don’t want to listen and so they put up a barrier and exclude me.

People make assumptions about me based on my disability. At school, my teachers didn’t believe that I would do anything with my life. But I knew I wasn’t going to let their attitude hold me back. I thought “I’m going to show them.”

And that’s exactly what I’ve done. I’ve been a volunteer with Sense for over 20 years, with both the adult’s and children’s service. We break barriers every day. We do art sessions at the services.

Sometimes, people will come in and only draw one line on the paper in a day. But it’s not about the one line, it’s what they do with it.

We’ll always keep the door open so they can come back and carry on. One day, they’ll have a whole picture. You can’t force people to do things, you have to support them to achieve their best. Every achievement should be respected and celebrated. We all have a duty to help people overcome barriers, however difficult. And you can start today, by pledging support for Sense’s campaign.

Find out more about the Break The Barrier campaign.

Sense’s reflections on the year

A message on our strategy, from Richard Kramer, Chief Executive of Sense and Sense International.

Looking back on the last year, we can see in sharp focus the degree to which uncertainty has become the norm. From the shock of the pandemic, we emerged into a cautious post-Covid recovery. Now, we face a cost of living crisis.

We’re acutely aware that such financial hardships are not equally distributed. Disabled people and their families are paying the highest cost, pushing more than half of disabled households into debt. Our support is needed more than ever.

In response, we introduced our cost of living fund for those disproportionally affected by the current financial situation. We’re proud to have brought about this support – and to be the first charity to do this – but more is needed.

We’re working hard to make the case for long-term financial support from the government. Alongside this, Sense wants to see increased investment in social care and its workforce, as we face possibly our most challenging time yet.

Throughout all the uncertainties, challenges and changes of the last number of years, one thing that has remained constant is the resilience and determination of our team at Sense. The spirit of our community has allowed us to continue providing the high-quality care and support that children and adults who are deafblind or have complex disabilities need.

As a member and supporter of Sense, thank you for your ongoing involvement. Talking Sense is a place for us to celebrate achievements across the whole Sense family. We’re proud to share these updates and stories alongside our own.

A message from our CEO: Already, we’ve achieved so much

Imagine a world where no one, no matter how complex their disabilities, is left out of life. This is Sense’s overriding ambition.

We know the need is there. Through ground-breaking, first-of-its-kind research, we’ve established there are 1.6 million people living with complex disabilities in the UK. By 2026, we’re aiming to support ten times more people than we did in 2021.

If we’re to do this, the challenges that people with complex disabilities face must be more widely understood. Our high-profile campaigns and new projects continue to push for public and government engagement with priority issues.

No decision about me without me

Sense’s new annual research programme saw over 1,500 people with complex disabilities share their lived experiences on a range of key topics. These insights are vital in our conversations with MPs and government. Their decisions must centre on your realities.

Tackling loneliness together

Post-pandemic, the Sense calendars have burst into life. From holidays and buddying to online art clubs and sensory sport – there were so many ways to connect. Nearly 6,000 people were supported through these programmes, including siblings and carers. We’re also very proud that Sense Holidays have now been judged as outstanding by Ofsted!

Inclusion from the earliest years

Getting the right support, at the right time, can make all the difference in a child’s development. We’ve created a number of new programmes for children, such as our Early Intervention and Play service, enabling us to reach 500 new families this year.

Through these expansions and changes, Sense is making great progress. The number of people we’ve reached has doubled since last year, to 28,000. We know the coming year will hold challenges for us all. But I, for one, have no doubt that all of us who are part of the Sense family – whether as a colleague, member, volunteer or supporter, will continue to rise to those challenges.

Sense events: We saw you sparkle at Thrive Festival

This year’s theme was shine bright and, wow, did you dazzle us! Thrive is the UK’s first arts and music festival designed specifically for people with complex needs. We put accessibility at the heart of our day, and disabled talent under our glittering stage spotlight!

People from across the country joined us for sensational performances, food and drink, activities and workshops. This year, we made our own sensory jumpers on the bike-powered sewing machine, we adorned ourselves with sparkle at the Transformation Station and we showed our talent on the open mic!

Here’s a quote from a parent who came to Thrive with her son, Romano:

“Romano favourites were the drumming and the yoga. He said today made him feel good and happy. Romano said he’d come back next year with a big smile on his face!”

It was an incredible day. Thank you to everyone who came to support us with our mission to build the best quality festival for disabled people. See you next year!

Sense fundraising: Run For

Run For is a fundraising challenge with a difference. This October, as our runners pounded the pavement to complete their self-set distances, they each received a stirring message of support from a Sense cheerleader.

By running for Remi, Ernie or Páuric, they had a chance to really connect with the special people who Sense supports. Good luck messages and congratulations from our cheerleaders really were heartfelt – they’re all chuffed with your hard work. Thank you to all our Run For runners!

Páuric’s mum, Janine, took part in Run For in February. She walked 80 miles and raised an incredible £1,997! Here’s a message from her:

“I really enjoyed my challenge – despite the rain and snow! My family have weathered a few stormy days with Sense by our side, so giving back to them was important to me. I wasn’t going to let the weather hold me back. I had so many lovely moments. It just felt like I was making a huge difference to my own wellbeing, as well as to the futures of other families who could find support from Sense.”

Hazel’s story: The Joy of Knowing Pete

Hazel Morgan’s son, Pete, had Down syndrome and profound and multiple learning disabilities. In her latest book, Hazel reflects on his life and legacy.

I count the 18 years spent with Pete among the richest of my life. I wanted this book, ‘The Joy of Knowing Pete: Much was said, yet no words spoken’ to show the positive influence of a young man whose strength, though expressed differently, shone.

Back in 1990, I wrote a book about his childhood called ‘Through Peter’s Eyes’. There was a real darkness to those years. Some doctors and surgeons refused to treat people with Down syndrome; they didn’t see their lives as being of equal value.

It made me ask questions. I wanted to learn everything about the new support options opening up for people like my son.

My new book looks back at his teenage years; on the societal attitudes and policies affecting people with learning disabilities, then and now.

I learned so much from Pete during his brief life. Society stands to gain a great deal by becoming more inclusive. There is, I feel, a need for greater policy commitment to people with learning disabilities. Every person should be valued in their own way; for their differences, not despite them.

I hope that many families will relate to this book. I’d love his story to reach parents, policy makers and practitioners in education, health and social care.

‘The Joy of Knowing Pete: Much was said, yet no words spoken’ is available from the publisher, YouCaxton, independent bookshops and Amazon.

Max’s story: My life as a deafblind drag king

Max is a deafblind drag king from Cambridgeshire. They shared their experiences and ambitions with Sense, as part of Pride 2022.

Being a drag king involves playing with masculinity, in all meanings of the word. Anybody can do it, regardless of their gender.

I have a rare visual impairment called Visual Snow syndrome; I am also Deaf. I sit on the milder end of the deafblind spectrum. When the lighting is perfect, I can easily be perceived as sighted and hearing. However, perfect lighting seldom exists, least of all at drag shows!

Getting into drag usually involves a lot of makeup. My visual impairment means that my entire field of vision is covered in a thick TV static, so textures like powder can be hard for me to focus on. This has definitely led to some “interesting” looks…

At least I have some distractions up my sleeve. I love experimenting with textures, scents, sign language and mobility aids. Do I sometimes dance with my symbol cane? Yes. Do I care if it’s only me and the front row enjoying my perfume? No. It helps me get into my zone and embrace my sensory differences.

There are so many ways artists with deafblindness could be better supported in drag. For me, something as small as teaching the audience BSL applause makes a difference. I can’t hear my track when people start clapping and cheering! And they always do clap and cheer, you know.

Read Max’s full story.

Natalie’s art: A personal approach to Black History Month

Natalie is an artist from London, of Caribbean heritage. She created a series of works for Sense exploring what Black History Month means to her.

I practise black history every day. Being Caribbean in Britain, cultural diversity is part of your life and identity. It means displacement and uprooting, historically, but it’s also grounding and re-affirming.
In these commissioned pieces, the symbols and shapes are all significant. In the centre of ‘Fortitude’, I’ve featured the Adinkra symbols of Ghana, West Africa. I chose these means of communication because it related to my ancestry.

The pyramids which overlay the whole piece reference the most recognisable symbol of African civilisation.

Naturally, my education of black history centred on the past. I’m aware, though, that if that history only speaks of degradation and suffering, it can become a self-fulfi lling prophecy. I want my work to be more rounded, to have uplifting elements.

Using Makaton, I included the symbols for ‘peace’ and ‘freedom’ on the central discs. Peace, because when the enormous contributions of African and indigenous peoples are acknowledged, we’ll have a deeper understanding and respect for one another.

And freedom because we all have the right to experience life fully. To be free from exclusion, prejudice and oppression.

Check out Natalie’s art and read her full story.

Our campaign: Cost of living crisis

Disabled people and their families are being severely impacted by the cost of living crisis. Even before the prices started rising, specialist equipment and support means that life is significantly more expensive for disabled households.

The support offered by the government so far, including one-off cost of living payments and the energy price cap freeze announced in September, provide temporary relief. However, for many disabled people and those on the lowest incomes, this isn’t enough to cope with the ongoing challenges they face.

We want to see a commitment of targeted, long-term support from the government. Our campaign and petition, launched in June, has nearly 50,000 signatures. Together, we’re calling for a benefits system that meets the needs of disabled people, including immediate uprates to bring benefits in line with inflation. We’re also calling for the Warm Homes Discount to be made easily available to households in need.

Our incredible group of campaigners all have lived experience. They were invited to take part in a government round table event to share the impact the crisis is having on them. It’s so important for their voices to be heard and their input taken into the heart of future support for disabled people and their families.

But we still have a way to go to ensure disabled people have the support they need as we move towards winter. The more people who sign our petition, the more chance we have of securing long-term support for disabled people and their families.

Join the campaign.

Sense Cost of Living Support Fund

According to Sense research:

  • 52% say that rising prices for energy and food have pushed them into debt.
  • 44% have gone without food or skipped meals to save money.
  • 77% don’t know how they’ll cope if prices continue to rise.

As well as calling for more support from government, we’re taking action to support the families who need it most. That’s why we created the Sense Cost of Living Support Fund. We’ve been providing one-off emergency grants of £500 to disabled households. We have now achieved our goal of reaching 1,000 families and individuals who are facing financial hardship.

Disabled people cannot simply choose to stop using energy for essential equipment like electric wheelchairs and oxygen machines. We hope this support will off er some relief for those struggling to manage rising household costs.

Catherine’s son is one of the individuals we support. When his wheelchair broke, the cost of repairing it was daunting. For the family, the grant is the difference between just getting by and living in debt:

“Sense’s support fund is helping us pay for repairs for our son’s wheelchair. It’s a relief to have received this support. Without the grant I’m not sure how we would have paid for it, we may have gone into debt – and that’s before the winter when we have to make sure the house is warm for our son. Having to constantly think and worry about the additional costs is horrible and it makes me quite low sometimes. You just don’t know where to go to for support.”

While we’re proud to be a charity that’s leading the way in addressing the cost of living crisis, this isn’t a long-term solution. We’re calling on the government to tackle this crisis and on other charities to provide as much support as they can.

Help to keep costs low

There’s a lot of information out there for families looking to reduce their bills this winter. Make sure that you get the help you’re entitled to.

If you’re disabled and receive certain benefits, you might be entitled to financial support during the winter months. Check your eligibility for the following:

  • Winter fuel payment: A payment of between £250 and £600 to help you pay your heating bills.
  • Cold weather payment: A bit of extra money to help with energy costs during very cold weather.
  • Third party deductions: Help to use your benefit payments to pay towards utility bills and rent.
  • Energy supplier hardship grants: If you’re in debt to your energy supplier, you might be able to get a grant to help pay it off .
  • Fuel vouchers: If you aren’t able to afford a top up on your prepayment meter, contact your local council to see if they can supply a voucher to help you pay.

Find the full list.

Priority Services Register

It’s worth checking with your energy and other utility suppliers, such as water, whether you’re eligible for their free support service. Signing up for their Priority Services Register means you can access assistance and information in the form that best works for you.

Helping to spread the word We partnered with Thames Water to help them help more of their customers with complex disabilities. Since January 2022, over 4,000 disabled people living in the Thames Water area have signed up to their Priority Services Register.

Charlotte, who is supported by Sense, now receives her water bills from Thames Water in braille format. She told Sense: “What Thames Water are doing to be there for people like me, people who have eyesight problems or other disabilities, puts me at ease.”

If you’re a Thames Water customer, you can watch Charlotte share her views on the service and find out more about it on Thames Water’s website.

Keith’s story: The rising price of dignity

Keith and his partner Helen are full-time carers for their son, Geordie. Geordie is 21 years old and has CHARGE syndrome. The cost of living crisis has hit their family hard. We used to be well-off , before I retired, because I had a good job. Now, though, our income is made up of my pension and Geordie’s Universal Credit. It’s a fixed amount and we think that our bills will soon overtake our income.

Despite us trying to save and be careful, we don’t have a choice about the extra costs we face to support Geordie. Our son’s limited vision means that we need lights on all the time; he uses an electric pump to eat, which must be charged every day; and we need to buy his night-time incontinence pads. It all adds up.

These bills are the non-negotiable costs of his safety, health and dignity. We just have to be strict on all our other spending, like our food and family outings. I’m worried about things getting worse later in the year.

We received a grant from Sense’s Cost of Living Support Fund. Even though there are bills that need paying now, we’ve put that money away to help us cope with the winter ahead. It will help us keep the lights and heating on as energy costs get even higher.
Our financial support has dropped away throughout Geordie’s life. Universal Credit is just £234 a month, much less than what we received through Child Tax Credits and Disability Living Allowance.

The government needs to take disabled households seriously. We need long-term support that gives us an equal chance at life, as everyone else has.

Sign our petition and read Keith’s full story.

Sense International: Meet Rutu

At Sense International, we work to ensure that young people with deafblindness have everything they need to build strong life foundations. We want people, like Rutu, to be able to participate in their community and build a livelihood.

Rutu is 17 years old, the eldest of six children. He’s deaf and has an intellectual disability. Rutu lives at home with his parents, who look after him.

When Rutu was a young boy, his mother noticed he had delayed speech and mobility. She took him to a specialist who diagnosed him with an intellectual disability. This was difficult news for his parents and, initially, they were worried about how Rutu’s life would be impacted by his disability.

Whatever the future held, Rutu’s parents wanted to stay strong for him. They knew that discrimination was a risk in their community.

With his parents help, Rutu enrolled in Sense International’s ‘Learn, Work and Earn’ programme. There, Rutu trained to become a hairdresser. Once he’d built up his skills he was provided with a start-up kit to help him begin building a livelihood.

Since enrolling on the Sense International programme, Rutu has started an apprenticeship at a local salon. Now that Rutu is working, he can help to support his family. His mother feels that her son now has the opportunity to live a more independent, fulfilled life.

Here, Rutu is part of a community. He’s a visible, valuable member of society – and his own family. Having access to employment means that Rutu can now help to support his family financially. Rutu’s mother has expressed her gratitude for Sense International’s programme. It’s given her son the opportunity to live a more independent, fulfilled life.

This work has been made possible by the TVET Toolbox, Enabel and the European Union.

Donate now to support even more young people like Rutu to thrive and achieve their full potential.

Sense events: Commonwealth Games

This year’s Commonwealth Games was an event close to our hearts. With the motto ‘Games for Everyone’, this was an opportunity to celebrate diversity and inclusion across the city of Birmingham!

During the event, Sense TouchBase Pears was transformed as we threw open the doors for our very own two-day festival. We offered a place for people to be themselves, to try new things and to engage with the Games in whatever way they wanted. Whether that was kicking their shoes off to watch from a beanbag or jumping into one of our workshops.

Our festival saw members of our community, including HRH the Princess Royal, come together to celebrate art, sports and music. Thank you to everyone who made the event as brilliant as it was.

Esther Jones from Sport England said:

“It was special to experience the first accessible live site connected to a major multi-sport event – we were thrilled to be invited. The Sense TouchBase Pears site was a wonderful setting for all the community to enjoy the Games together. “It’s important to Sport England that major sporting events are accessible. Sense showcased the value of this, having a totally inclusive venue that enabled people to enjoy the games and also have a go at different sports and activities. This was great to see!”

Charlotte’s screen reader review: Life with talking tech

Screen readers are an important, if imperfect, part of Charlotte’s everyday life. She’s blind and needs this support to stay connected to the world around her. Charlotte tells us about life with her talking technology.

Screen readers do what they say on the tin, they read text on screens aloud for visually impaired users. We’re all so dependent on our devices now, without screen reading software I expect I’d feel pretty cut off!

It enables me to do the things I want and need to do each day. It also protects a lot of my personal rights, things that I guess others take for granted. Like privacy, independence and the opportunity to work.

Sense as an expert by experience. I’m sort of a consultant; I can help my colleagues understand what it’s like to live with a disability. This helps Sense to assess accessibility in everything from festivals to transport. I’m always busy!

I get a lot of questions about how screen readers work. Sense know that a lot of people they’re writing for will use this software. I get asked about features I’ve never thought about. Like, for a piece of work I did for Thrive Festival, the team wanted to know if the colour or size of the text made a difference. What about the way headings are coded? Did punctuation change the way a sentence sounds?

The truth is, there are quite a few different programs out there and the answers to those questions will be different on each one. Most people, myself included, have two or three options at their fingertips! You just never know when a program will struggle with a website or app, or just start bugging out.

For anyone thinking about getting a screen reader, my advice would be to try out a few options first. Then get a feel for which one is going to be best for you. Despite the hiccups, a screen reader is worth having.

Read Charlotte’s full story.

Activity: Using all your senses to bond as a family

When you have a child with a complex disability, or who is deafblind, finding ways to communicate and play takes a little extra creativity. Sense has helped families like Phillippa’s find fun and meaning in sensory play. Get involved!

My son Logan has cerebral palsy and brain damage, as well as limited hearing and vision. We use objects of reference to communicate with him about the day ahead.

There are so many parts of each day that he looks forward to, from bath time to visiting the Sense Centre for inclusive play. Objects of reference help Logan anticipate when we’re about to do any one of these activities.

For dinner time, we’ll give Logan his favourite spoon. He’ll feel it and we’ll tap it against his mouth so that he knows what’s happening. Then he’s got a rubber duck for bath time. Some references are quite simple and logical… other ones are a bit more obscure! The lady who comes in to give him a massage, her object of reference is some bits of material plaited together because she has dreadlocks.

These new ways of communicating, which Sense introduced us to, have been a real lifeline.

Read Logan’s story.

Game: Guess the character from the object

Each person must think of a character. This can be from a book, game, film or a real-life celebrity. Who you’ve picked is a secret and it’s up to everyone else to guess who it is! As clues, bring three objects along for everyone to see, touch or taste.

If you’re guessing, you can only ask 20 ‘yes’ or ‘no’ questions. If you think you know who it is, shout “Sense!” and give your answer. The first person to get it right wins that round. Here are some ideas to get you started:

  1. A marmalade sandwich and a raincoat
  2. Ice, cottonwool snow and sequins

Here are the answers to these examples:

  1. Paddington Bear
  2. Frozen’s Elsa

Info on a free Sense webinar: Planning for their future

Join our free live Wills and Trusts webinar on Wednesday 22 February 2023 at 10am
If you’re a parent or carer of a person with complex disabilities, it’s vitally important to properly plan for the future, when you’re no longer there to care for them.

On Wednesday 22 February 2023, specialist lawyer Philip Warford from Renaissance Legal will be joining Sense to talk to families about how to plan for the future using carefully prepared Wills and Trusts. There will also be a live question and answers session afterwards.

Philip will talk about the importance of making a Will and how a Trust can be a useful tool to help manage funds for disabled people throughout their lifetime. These preparations will help your assets to be managed by the people that you choose.

He will also explain how to safeguard means tested benefits and how to provide financial security for your child, as well as for the rest of your family.

To book your place, please email [email protected] or call our supporter services team on 0300 330 9257 (Monday-Friday from 9-5pm).