Zach and Luca’s mum Faye tells us about the incredible bond between the brothers. Luca has CHARGE syndrome and Zach, along with his family care for Luca.
Faye talks about how over lockdown, Zach has benefitted from online sessions offered by Sense, when his football for example stopped.
Zachary has always been absolutely amazing with his little brother, Luca. As a mother, I couldn’t be prouder of him but, I always felt a pang of guilt that I could never spend as much time with him has I do with Luca. You see, Luca was born with CHARGE syndrome which is a rare genetic condition that affects his vision, hearing and balance. Sense and other organisations have been there for Luca, but it always left me wondering, who was there for Zach.
I’m Rachael and I work in Sense’s policy, public affairs and research team. My job is to make sure that we understand how disabilities affect people’s lives through research. And that means that I’m always looking for the latest data.
Here’s 5 things we’ve learnt from research so far this year.
1. The number of disabled people in the UK is growing
2. Many aspects of life have changed due to the pandemic
Life has been very different for everyone in the last year or so. But research by the Office for National Statistics found that the impacts of the pandemic are especially far reaching for disabled people. About a third (32%) of people say that their health is being affected, a third (34%) say their relationships have been affected and a quarter (27%) having limited access to groceries, medication and essentials.
Sense’s Forgotten Families research last year found that community support reductions were having a big impact on disabled people and their families and these new figures show that not much has changed since then.
3. There’s still a big gap in the number of employed disabled people compared to non-disabled people
Disabled people can face many barriers in getting into and staying in work. Unfortunately, the latest research by the ONS found that only just over half of disabled people (52%) aged 16 to 64 years are in employment compared with around 8 in 10 (81%) of non-disabled people. The better news is that this gap is narrower for some groups for example, 72% of people with hearing loss are in employment, as are 57% of people with sight loss.
4. Loneliness is having a big impact on disabled people’s health
The pandemic has shown how loneliness can affect everyone. As we exit lockdown, thousands of disabled people still face loneliness and isolation every day.
A poll of 1,000 disabled people by Sense found that 61% are always or often lonely. Even before the pandemic, 33% would be limited to having under an hour interaction with someone else each day and 70% say that social isolation is now affecting their mental health. Sense’s Left out of life campaign is all about tackling social isolation and loneliness. If you agree that no one should be left out of life, make sure you sign our pledge now.
5. Disabled people have lower health and wellbeing levels than non-disabled people
Disabled people rate themselves lower for happiness, life satisfaction and how worthwhile they think their lives are, compared to non-disabled people. Average anxiety levels were higher for disabled people. For example, 30% of disabled adults report low levels of happiness compared to 13% of non-disabled adults.
At Sense we believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential. This research is just the first step. Next, we’ll use the research findings to campaign to improve lives. And you can help.
Ian, 42, is from Rochford, Essex, and has Usher syndrome. His work as a photographer came to a complete stop during the pandemic, leaving him more isolated.
My name is Ian, I’m a photographer from Rochford, Essex, and I have Usher syndrome. This is a progressive condition which causes deafness and gradual sight loss.
I’ve experienced loneliness throughout my life, but the pandemic has magnified my sense of isolation. I live alone with my cat, Teddy, who has been a “saviour” for me in these difficult times.
The pandemic made me feel absolutely petrified because I’ve spent years living an isolated life, knowing what it can to you and your mental health. Loneliness affects everything – you stop functioning as a human being.
My photography work came to a complete stop due to the pandemic, which has further increased my sense of isolation.
The only time I go out is for essential shopping. I don’t have a set routine anymore and I’m not seeing people regularly. When you’re blind, you live a very isolated lifestyle already, so being able to go out and meet other people is essential to your connection.
I believe that raising greater awareness about disability and improving accessibility will help to create a more inclusive society where disabled people feel less lonely.
Despite all the struggles of the last year, I’m feeling hopeful about the future and looking forward to connecting with others again. I’m drawing from my past experience with isolation to get through this pandemic. I’m taking each day as it comes and looking ahead to the spring and summer for more light.
This last year has been difficult for so many people around the world. The news has been dominated by coronavirus and it feels like the lockdowns have lasted a lifetime.
However, while the pandemic has raged on, there’s been moments of hope and joy. People have connected in ways that were unimaginable a year ago and we’ve supported each other to find those little moments of happiness.
At Sense, we’ve worked hard to make sure that we’re adapting the way in which we support people with complex disabilities and their families.
Friends reuniting after lockdown
There’s been numerous moments that have challenged us and, on quiet reflection, made us stronger.
After a year of lockdowns, we’d like to celebrate the reunion of two best friends, Asif and Ashton, who have formed a bubble together. Watch the video below to see them meeting again for the first time since lockdown.
Keeping connected during lockdown
Asif and Ashton’s families kept them connected during lockdown with video calls. Their familes have seen the positive impact their friendship has had on their wellbeing. Some of their family members share how happy they are that the friends have been reunited.
Lynn, Ashton’s mum, is pleased the friends can meet in person
“They’ve always been so lovely together. They’re just like two old men. We’ve tried to keep them connected during lockdown with video calls and Ashton would have his ear on my phone. Now Asif is back at Sense, Ashton is full of smiles.
The past year has been very hard. Ashton likes to be doing things. He likes to be out. We go to the park and he likes to throw the ball for the dog. He can’t walk long distances, so we’ll do a walk with the wheelchair. We take drinks and crisps, but he needs to see people.
He’s very tactile and loves hugging. There’s no social distancing with him. That’s been really hard.
We’re lucky that we had an allotment and things to amuse him here. He’s just a very friendly social lad and he does love his best friend.
I love it that Ashton and Asif are back together. I’m overjoyed and he’s just so happy. For me it’s lovely that he’s going somewhere nice and seeing his friends.”
Saima, Asif’s sister, can see how happy he is after lockdown
“For us, the past year we’ve been keeping it really basic. Asif just stayed at home most of the time. There were occasions where he did have Zoom catch ups with a few of his friends but it’s just not the same being in person.
He really misses that independence and that routine. It was a struggle. He really misses just being at Sense and that space where he can be expressive.
Now he’s back, he’s just extremely happy. We understand that he missed going to Sense and Ashton, but we didn’t appreciate to what extent.
When he first went, he came back so happy. When he attended, I remember picking him up and he was so happy to have seen Ashton. I remember seeing him just laughing. As a family, it makes us so happy to see him like this.
When we told him that he was going to get the vaccine, Asif put two and two together and he knew that he’d go back to Sense.
Asif is just a happy young guy. For the family, we’re just so grateful and indebted to Sense for keeping in contact with him.’
Darran Thomas, 46, from Brynmawr in South Wales, started to lose his vision ten years ago when he was diagnosed with a genetic eye disorder.
One of the biggest impacts of getting a diagnosis was having to leave my job. It was one of my main forms of social interaction as I live alone.
Although I had lots of support from my friends and family, I’ve experienced so much isolation and loneliness since losing my sight.
Before the outbreak of Covid-19, I’d spend six hours a week with my Communicator Guide from Sense to go shopping, to the cinema or the theatre.
But, since the pandemic began, I’ve had to shield due to health issues and now only go out for medical appointments.
It’s the loss of little things, like meeting friends and going for days out, that’s had a big impact on me. I was used to living alone, but I could still make plans when I wanted to.
All of a sudden, it was like a shutter came down and it all totally disappeared.
Providing socially distanced support
My family live nearby so they can bring me meals and I can chat to them through the window, but I’m definitely missing days out and visiting my friends.
I’ve not been able to go out for nearly a year and it’s quite difficult and depressing.
I miss being out and about and the feeling of being in different environments. I miss going to the theatre more than anything – I love the sound and the experience of it.
I’m still supported by my Sense Communicator Guide in a socially distanced way and for that, I’m so grateful. She delivers my shopping, medicine and post and we can chat over the phone.
I know my Communicator Guide is still there for me in whatever way she can be, and that really helps. You build up trust which is so important because you’re relying on them to be your eyes. She’s not just someone who supports me, she’s also a friend. Sense has made a real difference.
Ian lives on the Isle of Wight and was diagnosed with Congenital Rubella Syndrome (CRS) when he was a baby.
When my mother died in 2017, I realised how much I had
depended on her for care, support and social interaction.
She gave me a lot of support. I live alone in a bungalow and I’m here on my own much of the time. Because of the restrictions of the pandemic, I don’t really see many people.
Living on the Isle of Wight, I’m fortunate to live near my
sisters who I can visit for dinner or go out with for walks. Before the
pandemic, I could also keep myself busy through my voluntary work.
It would have been very difficult without the voluntary work; I would have lived a much lonelier life. The only way to get over my mum passing was through voluntary work.
Loneliness can affect health and wellbeing
I was fostered at 10 days old with little information about my birth mother. Soon after my I was fostered, my sister noticed a problem with my eye. After tests, I was diagnosed with Congenital Rubella Syndrome (CRS); a condition that could have been prevented with a simple vaccine.
CRS usually occurs when a mother contracts Rubella during her first trimester in pregnancy. It can cause sensorineural deafness, eye abnormalities and congenital heart disease.
My experience of loneliness after the loss of my mother gave me a deeper understanding of what many people with disabilities face.
The impact of loneliness can be significant for many people, especially older, as well as some disabled people. Anxiousness and boredom can be bad for health and wellbeing.
Due to this, I’m an active campaigner for disability awareness to improve public attitudes. This includes things like more community activities, access to work and employment and financial support.
Changing perceptions of people with disabilities
At the start of the pandemic in 2020, my main source of social interaction, volunteering work, was gone overnight. Thankfully, my family were close by, but access to essential services was limited.
I was lucky
enough to maintain my family links but getting in food and essentials was not
easy during the first couple of weeks.
My experience of disability and isolation has made me an advocate for the people in my community and I’m working hard to change the public’s perceptions of people with disabilities. I previously supported in Sense’s 2017 loneliness campaign and, due to the current pandemic, feel that now is an important time to tackle this issue again.
The number of ways Sense supports people is really
astounding. From Communicator Guides to help people access the community to
children’s services, there is something for everyone in the Sense family.
While the majority of the public are isolated, I know that people with disabilities have been experiencing loneliness far before the pandemic.
Molly, from Maidenhead in Berkshire, was born severely deaf. At the age
of 12, she was diagnosed with Usher syndrome, a condition which causes gradual sight
and hearing loss.
My name is Molly, I’m 26 years old and I have a condition called Usher syndrome, which causes deafblindness and has no cure to date.
I’m director of Molly Watt Talks, a usability and accessibility consulting group, and co-founder of the Molly Watt Trust, a non-profit helping to raise awareness about Usher syndrome and provide access to technology. I also work part time as an accessibility and usability specialist in Nexer’s design team in the UK.
I’m also a motivational speaker, author
and illustrator of two anti-bullying children’s books, and an avid blogger.
Passionate about accessibility and using assistive technology to enhance the lives of people living with life-changing conditions, I’m really proud to have spoken at Houses of Parliament, Spotify and many other tech organisations.
I’ve experienced loneliness throughout my life as my disabilities can affect my confidence.
After almost a year of lockdowns and social distancing measures, the pandemic has limited my connection to others. I can no longer meet with my friends, clients or colleagues, which has affected my overall wellbeing. However, I’ve always tried to make the most of what I can with the tools I have at home, and luckily I’ve been able to work from home all the way through the pandemic.
I’m very sad that lots of my work travelling has had to be postponed or cancelled. I’m dependent on routine and structure, socialising on a weekend helps to break up the week and allows for things to look forward to.
It’s so important to connect with people, have a laugh, and get a chance to relax. Currently, it’s just a lonely, open-ended blur.
Making life more accessible to combat loneliness
I’ve been involved
with Sense for a number of years now. While I haven’t always been supported by
them, I can see the value of the work they do and services they offer people
who are disabled.
Simple things like going to the post office people can take for granted, which can be difficult for someone with disabilities, are suddenly made so much easier with the right tools and awareness.
I rely on public transport in my daily life and think improvements to make transport services more accessible would help my confidence to go out and gain more independence. Along with this, more community resources openly available and designed to be digitally accessible for all assistive tools.
Being able to access the local community, sports sessions, and even navigating the world of education and work does a lot to combat loneliness and the feelings of low self-esteem.
I was able to access many of these things prior to lockdown, and with the correct support and tools I was able to be more independent and of course, less lonely.
Knowing that I can count on Sense, should I need to, gives me the confidence I need to tackle the challenges in my way.
With the world growing more digitally inclined, I feel things will be gradually become more accessible, and life would hopefully improve for people who have disabilities.
Non-disabled people can possibly now empathise more with how people with disabilities can face both digital and environmental exclusion, social separation and lack of independence.
People don’t always mean to be unkind when using an offensive word. Often, it’s because they just don’t know why a word may be hurtful to an individual.
Below, we’ve outlined some guidance on how to speak about disability and disabled people. It’s not about being “politically correct”, it’s about trying to encourage language that is more inclusive.
discrimination and prejudice directed at disabled people. Ableist language
includes words that are derogatory or negative about
Should I say “disabled” or “handicapped”?
The two terms are often used interchangeably, however their meanings are different and they are not synonyms of one another.
A disability is the result of a medically definable condition that limits a person’s movements, senses, or activities.
A handicap is a circumstance that makes progress or success difficult, such as a film without subtitles or buttons on a lift without braille writing on them.
The correct term to define a person is: person with disabilities, or disabled person, rather than “handicapped”. “Disabled” is not an offensive word, when used in people-centric language.
language for disability
This is language that focuses on the humanity and individuality of disabled people. Avoid referring to them in passive and victimising group nouns.
Disabled people, people with disabilities
Deafblind person/person who is deafblind
“Disabled people” or “people with disabilities”?
Some people prefer a person-first approach to language (“people with disabilities”). Others see their disability as part of their identity, and are okay with terms like “disabled people”.
Don’t be afraid to ask someone how they’d like to be referred to!
In any case, do avoid dehumanising and marginalising people by using group nouns like “the disabled” or “the deafblind”.
Disability is an integral part of someone’s being – it’s part of who they are, not what they are. People with disabilities don’t want to be pitied or considered “inspirational” for simply existing. They are just people who happen to have disabilities.
A person who suffers with (a condition)
Wheelchair-bound, confined to a wheelchair
A person who has (a condition)
that have fallen out of use
You may have heard some of these words growing up, maybe even not being used with malicious intent. But these terms have a history of abuse and marginalisation, and are no longer used.
Dumb or mute
Lame, cripple, invalid
Learn more ways you can make everyday life more inclusive for disabled people. Take our Left Out Of Life pledge and find out how you can help combat loneliness and isolation for people with disabilities.
Making social media more inclusive is easier than you think. Small changes can make a big difference for blind and/or deaf people interacting with your posts!
In this quick 5-step guide, we’ll help you understand how people with visual or hearing impairments use social media, and what you can do so that your posts are accessible.
How do blind or deaf people access social media?
Disabled people will often use tools to interact with social media. Getting a good idea of how these solutions work will help you understand how to approach social media from an inclusive angle. Some of the most commonly used are:
Screen reader software: also known as text-to-speech, these programmes read web pages out loud, from text to emojis and images with descriptive text.
Braille displays: like a screen reader software, these tools take what’s on a web page, and display it on a piece of equipment that uses tiny retractable dots to display braille. Braille displays are vital communication tools for those with multi-sensory impairments, like people who are deafblind.
Magnifying tools: these help people who are partially sighted by blowing up text and images.
5 simple steps for accessible social media
Use emojis sensibly
Step 1: Alt-text
Descriptive text is what text-to-speech or text-to-braille software will read to describe images on social media. It will help the person paint a mental picture of the image you posted. You don’t have to go into a lot of detail – just pick a few key messages.
Most platforms will have an accessibility settings tab when posting, where you can enter your alt text. You can also simply type it at the end of your caption!
Step 2: Subtitles
Captions are essential for people who are deaf or hard of hearing to be able to watch your videos. They’re also extremely helpful to people with learning disabilities and sensory processing disorders.
Many in-app video editors allow
you to add text to your videos, and you can also download additional apps to do
so (search “closed captions” on Google Play store or Apple store).
Not only will it make your videos more accessible, but also more engaging to those using their mobile with the sound turned off – which is up to 80% of users, according to social media platform insights!
Step 3: Voice descriptions
Consider producing a version of your video where you describe what’s seen on the screen. A quick test for this is to play the video with your eyes closed. Have you missed something because you couldn’t see? Then you might want to consider narrating.
You can also add a descriptive transcript, a text that can be read by a screen reader or screen-to-braille device.
Step 4: CamelCase hashtags
Capitalising the first letter of each word in a hashtag will help screen reading software detect multiple words. This is known as CamelCase. If not capitalised, words in a hashtag are read as if they were one long word!
For example, instead of saying #accessiblesocialmedia, use #AccessibleSocialMedia
Step 5: Use emojis sensibly
Text-to-speech software reads all elements of a web page or social media post – including emojis! Avoid long strings of emojis, or alternating each word with an emoji, to make the experience more accessible to people with visual impairments.
For the same reason, avoid emoticons (little pictures constructed using text characters, e.g.: ʕ•́ᴥ•̀ʔ).
Fancy text characters you wouldn’t find on a normal keyboard (like this 𝔢𝔵𝔞𝔪𝔭𝔩𝔢) are not simply a different font – they are scientific symbols that are used to mimic unusual text. To make your posts accessible, you should avoid using these online “fancy text generators” and use your normal keyboard instead.
You 𝘵𝘩𝘪𝘯𝘬 it’s 𝒸𝓊𝓉ℯ to 𝘄𝗿𝗶𝘁𝗲 your tweets and usernames 𝖙𝖍𝖎𝖘 𝖜𝖆𝖞. But have you 𝙡𝙞𝙨𝙩𝙚𝙣𝙚𝙙 to what it 𝘴𝘰𝘶𝘯𝘥𝘴 𝘭𝘪𝘬𝘦 with assistive technologies like 𝓥𝓸𝓲𝓬𝓮𝓞𝓿𝓮𝓻? pic.twitter.com/CywCf1b3Lm
Steven is deafblind and works in the Sense Campaigns team.
Over the years I’ve experienced loneliness and social isolation on a number of occasions. While the pandemic has undoubtedly led to me leaving the house less and being more socially isolated, the move to more online methods of keeping in touch has offered opportunities as well.
My name is Steven Morris, I’m 37 years old and I work in the Sense Campaigns team.
I was born with a rare genetic condition called Norrie Disease which led to me being totally blind from birth and developing a progressive hearing loss as I grew up.
By my late 20s, I’d been to university and had a full-time job. Sadly, though, despite being surrounded by colleagues, I felt incredibly isolated and always dreaded the ‘so what did you do at the weekend’ question. Most of the time, the answer would have been ‘nothing’.
By this time, my hearing had deteriorated to such an extent that even with two powerful hearing aids, even the simplest conversation was incredibly challenging. I did have great friends at the time who did their best to include me but there are only so many times you can turn down an invitation to go clubbing (I was in my 20s, what can I say?) before the invitations inevitably dried up. It wasn’t that I didn’t want to go, every time I said no it felt awful but the anxiety of not being able to hear what was going on was just too much. I even tried to find local groups with similar interests to me, such as book clubs but all of these took place in pubs with all the background noise.
When I was 30 my life changed when I received Cochlear Implants (CIs). CIs are devices fitted inside the skull during an operation. They work by turning sound into electrical signals and sending them to part of the inner ear called the cochlea. From here, the signals travel to the brain and are heard as sound.
This had an immediate positive impact on my life—although
very noisy environments were still challenging, it was now much easier for me
to have conversations either 1 on 1 or in small groups.
My new employer Sense was great and colleagues made every effort to include me in what was going on in the office, but even so, there was still plenty I missed because I just didn’t hear it! You know the kind of thing, the banter around the coffee machine about who got voted off from X factor that week, the outrage about a poor refereeing decision in the weekend’s football just to name a few examples. I also found getting to the office challenging due to my disability and would often not be at my best when I did arrive so struggled with the extra effort needed to hear in a challenging environment. As with a lot of workplaces, a lot of the social activities revolved around pub trips etc. which as I’ve said before presented challenges.
Like everyone, my world changed dramatically in March 2020 when we went into lockdown. At first, I really struggled with isolation. Because of the combination of my sight and hearing loss I need support to leave the house as my hearing isn’t good enough to safely judge things like road crossings. The rules on social distancing meant that my support worker wasn’t able to guide me during the early part of the pandemic so I was reliant on my key worker wife to support me in getting exercise. This led to me hardly leaving the house between March 2020 and July 2020. With not getting any exercise, I put on weight as well as the mental health implications of not getting enough fresh air. For a lot of this period, I was furloughed which also limited my interactions with other people.
It wasn’t until the summer that guidance was developed
setting out how a blind person could safely be guided by someone who wasn’t
part of their bubble. This did enable me
to go out more.
I’ve been fortunate recently in that the move online has actually helped me. Whereas before the lockdown I’d have to contend with getting to a work meeting, ensuring the equipment I needed to hear in the meeting was working properly and deployed in the best possible way to pick up as much sound as possible. Now, I simply fire up my laptop and can access the sound of the meeting directly into my cochlear implants.
Similarly, I’m able to access different types of social activities online that I wouldn’t have had the confidence to go to before. I love a quiz and so the Zoom quizzes that have become popular this year have been great. I’ve also started attending a local book club that I might have struggled to attend before lockdown as it would have been held in a pub with background noise.
While I, like everyone else look forward to a time when things return to something like normal, I hope some of the online activities continue post lockdown. This is only my own personal experience and I’m very conscious that the move online isn’t for everyone and can actually exclude some disabled people, but for me, it has certainly enhanced what has been a challenging lockdown period.
It’s important to note that technology is no substitute to face-to-face human interaction but it does offer opportunities to create a more inclusive society and I very much hope that online activities do continue for people like myself who value them.
I’m passionate about sharing my experience and raising awareness of loneliness among disabled people so that together we can tackle it. And that’s why, when you sign the Sense pledge, you’ll get my free guide and top tips on how to make life more inclusive for everyone.