I haven’t been out since the pandemic started nearly a year ago

Headshot of a man smiling at the camera.

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.

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I experienced loneliness after the loss of my mother

Ian Capon standing outside in the street.

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.

Sign our pledge and join us in taking action to make sure that no one is left out of life.

I would love for life to become more accessible now everyone has felt loneliness in the pandemic

A woman standing behind a podium making a speech.

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.

Sign our pledge and join us in taking action to make sure that no one is left out of life.

Do’s and don’ts of inclusive disability language – a quick guide

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

What is ableist language?

Ableism is discrimination and prejudice directed at disabled people. Ableist language includes words that are derogatory or negative about disability.

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. 

Two women sharing a cup of tea, talking and smiling

People-centric 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. 

Don’t say

  • The disabled
  • The deafblind

Do say

  • 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”. 

A man and a woman talking in a yellow room with a family photo hanging on the wall

Victimising language

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. 

Don’t say

  • A person who suffers with (a condition)
  • Wheelchair-bound, confined to a wheelchair

Do say

  • A person who has (a condition)
  • Wheelchair user

Other words 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. 

Don’t say

  • Dumb or mute
  • Spastic
  • Mongoloid
  • Lame, cripple, invalid
  • Mentally retarded
  • Mental patient

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.

How to make social media accessible to disabled people

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

  1. Alt-text
  2. Subtitles
  3. Voice description
  4. CamelCase hashtags
  5. 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.

Follow us on social media

Stay in touch with Sense for more examples on how to make social media accessible for disabled people. We are on Twitter, Facebook and Instagram!

Help create a more accessible society

Take our pledge to see how you can help out, so fewer people are #LeftOutOfLife.

The pandemic has increased isolation and loneliness. However, it may still have a positive legacy

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.

Steven walking arm in arm with a woman. He is holding a white cane.

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.

A close up photo of Steven. His hair is cropped short, and he is wearing black-rimmed eyeglasses. We can see his cochlear implant.

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.

Steven is wearing a stiped blue shirt, and speaking to a man holding up an iPad

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.

Sign our pledge and join us in taking action to make sure that no one is left out of life.

I’ve struggled with loneliness and lost my independence during the pandemic

Headshot of Natalie smiling.

Natalie lives in Wales with her husband and two daughters. In 2012 she was diagnosed with Usher syndrome.

I’m Natalie, I’m 38 and I live in Ebbw Vale, Wales, with my husband and two daughters. In 2012 I was diagnosed with Usher syndrome, which causes deafness and gradual sight loss. My symptoms became so bad that I had to stop working in 2016.

Going out has become increasingly difficult and I lost my confidence and independence with the loss of my sight and hearing. I find it so distressing having to go out as I know what I am going to face. The looks and abuse, all because we look ‘normal’ on the outside.

Soon after my Usher diagnosis, I started receiving a service from Sense. Twice a week, a Communicator Guide would visit me and together, we’d could do all the things that I’d wanted or needed to do. We’d go shopping or attend doctor’s appointments, but most importantly, this time together helped me to increase my confidence in accessing my local community.

Being diagnosed with Usher syndrome is a very isolating experience, but through Sense, I began to feel less and less alone. They even introduced me to Leanne, who was also newly diagnosed with Usher syndrome.

Together we met up and shared our experiences. It was so important for us to chat and meet up with the support of our Communicator Guides. We grew so close, Leanne even asked me to be godmother to her daughter. I will never forget that day.

As the global pandemic took hold, services like my Communicator Guide had to be stopped and once again, I found myself homebound.

I can’t go out by myself. I can’t hear well enough to use the phone or see well enough for video calls, so it’s hard to keep in touch with people. Since the first lockdown in March, I’ve lost all my independence that I’ve worked so hard for.

I know it’ll take a while before the world becomes as accessible as it was before for me. My hope is that there’s more disability awareness when everything opens up and I can leave the house without feeling as cautious. With the support of my friends, family and communicator guide, I’ll slowly gain back my independence but, with the support of my local community, that independence will come back quicker than ever.

Sign our pledge and join us in taking action to make sure that no one is left out of life.

I’ve experienced loneliness, but thanks to a buddying scheme I feel less isolated

Headshot of Saihan. He's wearing a suit and smiling into the camera.

Saihan lives in East London and has autism. He campaigns for more understanding and support for people with disabilities.

My name is Saihan, I’m 17, and I was diagnosed with autism when I was young.

My experience of loneliness is continuous still to this day. I’ve been struggling with loneliness and isolation since long before the pandemic. Even before this pandemic, I’ve always stayed at home just watching TV and doing schoolwork.  

When I was at my old school, I always sat alone during break and lunchtime. I was just on the computer look for something to do and playing games. Games were blocked and finding fun things to do was impossible.

Even in my lessons, I would sit alone. When there was partner work, no one would want to work with me. Therefore, I would just do it by myself. I lost confidence in myself and was always being belittled. When there was group work, I would always be isolated and just hovering.

One time, my former peers just kept me with them and didn’t tell me to go away because they would get into trouble. Even though I was with them they excluded me from participation. People used to run away from me. It’s not good but it’s life. I accepted it a long time ago.

The only thing I find fun is doing schoolwork, learning and eating food. Every day, I always check my emails just in case there are any opportunities or things today.

When the lockdown started to take effect, I found the whole thing quite isolating and scary. Usually, where there are things that make me anxious, I can go to my mental health sessions and I feel a lot better. When these stopped, I became even more worried.

Support from the Sense Buddying Team

My sessions with the Sense Buddying Team were so important for me to get out and do different activities. When all of that stopped due to the pandemic, my buddy, Maria, came up with brilliant ways for us to still have sessions.

Instead of arranging trips out, we started to arrange video chats. When we learned how to share a screen, we started holding our own movie sessions too. I’m interested in politics and history, so I really enjoyed The Kings Speech.

Having a volunteer Buddy is really important to me. Maria is someone that I can talk to outside of my family which is really nice when I’m feeling anxious. She’s always really kind and helpful. Also, I learn a lot with her. If it wasn’t for my buddy, I wouldn’t know much about Dunkirk or the Ottomans! I still get worried about things from time to time but Maria helps me take my mind off things.

When this is all over, there are lots of things that I’m looking forward to doing. Seeing Maria for our sessions is definitely high on my list but I really want to go back and see everyone at the Sense office in London. Sense volunteers have helped me so much and I really want to volunteer my time too and help other people.

Having a Sense Volunteer Buddy has been so important for me, especially now, since some of my other services have had to stop. Thank you Maria, and all the other Sense Buddies out there for all your hard work and dedication!

Sign our pledge and join us in taking action to make sure that no one is left out of life.

Isolation and disability

We asked disabled people to share their experiences with loneliness, before and during the pandemic. Saihan and Natalie tell us what it’s like to feel isolated when you are disabled.

Saihan’s story

I once gave a speech about my experience of loneliness and growing up with Autism. My school at the time offered to publish it in their newsletter but quickly withdrew that offer. They were afraid I might get bullied or there would be some backlash. All I wanted was for my experience and voice to be heard. Ironically, my speech about loneliness was ignored.

My experience of loneliness

Long before the lockdown, I felt isolated and alone. My time was spent mainly watching TV and doing schoolwork. At school, I sat alone during break, lunchtimes and even some lessons. When there was partner work, no one wanted to work with me. When I was in primary school, I used to get bullied a lot. I got teased and made fun of which made my self-esteem very low. All of this has had a huge impact on my confidence and mental health.

Every morning, I would wake up hoping that maybe today, someone would talk to me. Sense’s Left Out Of Life campaign is so important to raise awareness of how loneliness affects people and what we can do to help make a lonely person feel better. Being lonely is not a good feeling and can be really depressing. Most people wouldn’t want to be by themselves all the time and it can cause a lot of pain and destress, especially when you are in trouble or in need of a helping hand.

Who do you turn to in this case? No one, because I have no friends.

Saihan is a young man of 17, smartly dressed and wearing black-rimmed glassses

How can you make a difference?

There is one question that bothers me every day. I look like everyone, participate in class like everyone and I breath the same air as everyone. So, why do I get treated like an alien? It is a crying shame that when I would go into class,  people would move away like I was a bad smell. I am not asking for the world’s riches, sympathy or any charity, but just to be accepted for who I am. As each day goes by, loneliness wants to stay, but this can all change. How can we all as individuals make a difference? It is not that hard. All it takes is a simple ‘hello’ or ‘how was your day’ to change a person’s life.

Loneliness hasn’t stopped me from dreaming big

My mental health, autism and loneliness has not stopped me from dreaming big. Despite everything, I work hard every day of my life to achieve my goals and hope to one day, get into Oxford or Cambridge University to get a Philosophy Doctorate in Politics before moving into politics as a career. My dream is to one day, be the leader of the Labour Party and eventually Prime Minister of Great Britain in the hope that I can change how people view disabilities.

People suffering from loneliness might be lacking connections with others, and feel chained to impossibilities. What you may see as a smile could merely be the disguised weep of a wounded heart. The most important thing to remember is that it just takes one person to approach a lonely person and make them feel wanted. If you see someone feeling down, talk to them and accept them for who they are.

Natalie’s story

Being diagnosed with Usher’s syndrome in 2012 was one of the most isolating experiences of my life, especially when that diagnosis came in the form of a letter through my door. Having experienced vision and hearing loss throughout my life, the diagnosis came with a sense of relief and dread. I was happy to know that what I was experiencing had a name but, what would this mean for me moving forward?

My confidence was affected

For years, I tried to not let my condition get in my way but in 2016, I had to leave my job as my eyesight and hearing had deteriorated further. Work is so important for us as humans. It gives us purpose and control and suddenly, for me, it was gone. This affected my confidence as I was now spending more and more time at home.

Natalie is a young woman with dark blonde hair. She is wearing a cosy white jumper.

There is a lack of understanding about disability

When I would go out, I had my white and red cane to show people that I was deafblind and generally, people would stay out of my way. People would soon get hostile if I did something like check my phone. There is a lack of understanding that being deafblind is a spectrum and while I don’t have complete loss of vision, I still need a cane to help me navigate. If I did something that people wouldn’t not expect a deafblind person to do, that I felt immediately shunned.

It took me a long time to build up the confidence to go out. My Sense Communicator Guide would take me out to the local community and, thankfully, I met Leanne during this time through Sense. She had also been diagnosed with Usher’s and I finally had someone to talk to who understood what I was going through. We have become the best of friends and would meet up regularly for coffee.

I find communication much harder

While the lockdown has been hard on us all, for disabled people, it has really taken its toll. Not being able to access my local community and go out as I used to has hugely impacted my confidence again and now, I feel like I am back where I started. Video and phone calls are quite inaccessible to me so I can’t keep in touch with my close friends and family. With everyone wearing masks, I find communication so much harder as I lip-read quite a bit.

I am lucky to have a husband who can help me but there are so many more people out there becoming increasing more isolated and alone. While the lockdown has been hard on us all, for disabled people, it has really taken its toll. My hope is that from this, comes a greater understanding about the difficulties disabled people face.

No-one should be left out of life, no matter how complex their communication needs. Help us combat isolation by taking our pledge to create a more inclusive society.

Who’s the new Children’s Commissioner and what does this mean?

As we are about to welcome a new Children’s Commissioner, we look into what this unique role means and what they can do for disabled children across the UK.

Who is the Children’s Commissioner and what do they do?

The Children’s Commissioner is responsible for listening to children and young people to make sure policymakers take their interests into account when making decisions. The Commissioner is separate from the government and has unique powers to help bring about long-term change for children.

Today, 17th February, Anne Longfield has given her final speech as the current Children’s Commissioner for England. When her term in office comes to an end, she will be replaced by Dame Rachel de Souza.

A young girl playing with green toys, while being supported by a woman

Why is this important?

The outgoing Children’s Commissioner has done a significant amount of work to improve how the government listens to children and young people, and more recently in understanding the impact of Coronavirus on education and attainment.

Children with complex disabilities have been some of the hardest hit by the pandemic. Many haven’t had access to the vital care and support they need to live safely, and have often not been able to access their education. Couple this with a SEND system (Special Educational Needs and Disabilities) that is already under significant pressure and cannot meet the needs of many of the children it’s there to support, means that it’s harder for children with complex disabilities to have the best start in life.

With a new Commissioner coming in, we have an opportunity to bring a greater focus on giving disabled children a voice, in turn meaning more children with complex disabilities and their families living the life they want lead.

A boy smiling to a support worker. He is using a blue wheelchair.

What do we want to see from the next Children’s Commissioner?

We want to see the next Children’s Commissioner put a clear focus on disabled children. With the right support in place, children with complex disabilities can have a meaningful education, and make progress towards their goals and outcomes, living the lives they want to lead.

We want to see the Children’s Commissioner champion the rights of disabled children to policymakers in government, giving particular regard to the increased impact that the pandemic has had on disabled children and young people.

There is a lot of work going on inside and outside of government at the minute, to improve the systems of support around vulnerable and disabled children. This includes the Care Review, the SEND Review and the National Disability Strategy. It is vital that the Children’s Commissioner uses her powers to channel the voices of disabled children to ensure they are heard, and at the heart of this work.

We look forward to working with Dame Rachel de Souza when she takes up her role as the new Children’s Commissioner for England. 

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