Invisible disabilities – Karolina Pakenaite on her experience of the pandemic

Thursday 3 December marks International Day of People with Disabilities, and this year’s theme, ‘Not all Disabilities are Visible’ focuses on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain, sight or hearing impairments.

To mark the day, we spoke to Sense supporter and campaigner Karolina, who’s been working with us to raise awareness around face covering exemptions, about her experience of the pandemic.

Tell us a bit about yourself and what it’s like living with an invisible disability:

My name is Karolina and I was born Hard of Hearing. I grew up in both the deaf and hearing world as I went to a deaf nursery and was always part of some deaf community, but spent all of my education in mainstream schools. I started to lose my peripheral sight at around age 19. I became embarrassingly clumsy and, after being referred to a specialist, found out that I have Ushers Type 2A. Three years later I got registered Severely Sight Impaired (blind) as my tunnel vision became very narrow and I could see almost nothing in the dark.

Usher syndrome is an inherited, genetic condition. The main symptoms are hearing loss and sight loss, and, in some cases, balance difficulties. Everybody with Usher syndrome experiences the condition in a different way and it also changes over time.

Karolina is a young lady with white skin and long strawberry blonde hair. She's smiling to the camera, her arms crossed.

Turning my disability journey into something positive and empowering is very important to me and I feel really happy to say that I recently passed my PhD confirmation exam and research on tactile images for the visually impaired; something that’s both very interesting and personal to me.

Even to this day, I often forget that I have sight loss because the changes to my condition happen slowly over time and my guide dog is so good at his job. This can make it extremely hard to ask for help when I feel I need it or explain my condition to those who ask. Part of the condition means that I often get ringing noises, flashes and floaters in my eyes, but these have been always part of me, and something I   find quite stimulating and therapeutic. The changes were normal to me and I knew no other normal. I was always very independent and one of the biggest challenges with having an invisible disability is asking for help.

What has your experience of the Covid-19 pandemic been like as a disabled person? Has anything been particularly challenging? Any positive experiences, of people being particularly supportive for example?

The introduction of face coverings has been a new challenge for everyone to get used to and this is even harder when you have an invisible disability. There is still a lack of awareness that exemptions exist for a range of people including those who have a disability – you can read more about the face covering exemptions here.

Unfortunately, back in July I experienced an incident when I was challenged while travelling on a train when my sister removed her face mask temporarily so I could lip read. One of the challenges of having an invisible disability is it’s not immediately obvious to other people and this is something many people with invisible illnesses experience. I made a video recording the experience and worked with Sense to raise awareness in the media. The purpose of the video was not only to bring awareness of those who are exempt, as I am certain that most of us are doing everything they can to do their part, but also to bring a little reminder to stay kind during this difficult time.

Despite this negative experience, many people have also been very understanding. It’s so nice whenever someone points to their mask to ask if they should lower their mask when they realise I need a bit more help, especially when I am very independent and asking for help can be very hard. This always makes me warm and fuzzy and end up wanting to hug them for their kindness. Little things can mean so much to me.

Another positive experience has been at University – my department has arranged British Sign Language lessons so I can stay connected with everyone when we return to work wearing masks. It has been so fun and its one of the perfect skills to (re)learn over lockdown!

Has your experience of being challenged about face coverings in July changed anything?

I am used to being challenged or discriminated and as my disability is invisible, I’ve learnt to be a bit more forgiving. One thing I learnt came from the reaction to my video – many made nice, supportive comments, but there were quite a few very confused. It made me feel a little fragile, knowing how I could meet these people in person but I guess it was worth speaking up in the end as awareness was clearly needed.

If you could give others advice on how best to support someone with an invisible disability, what would this be?

Everyone is different so what works for me might not work for others or might not be as helpful as it is to me. So I cannot speak for everyone, but one thing I think everyone appreciates during this difficult time is kindness. 

Festive Special: Sense Sign School

Sense’s mission is, and always has been, to remove barriers to communication so that no one is left out of life.

Everyone can and wants to communicate and connect with other people –  but how do you communicate with someone who is deafblind or has complex disabilities?

And so, the idea of Sense Sign School emerged, with the goal to engage and motivate people to communicate with others in new ways and get involved in Sense’s vital work.

Top of the class

The real star of the show was the teacher, 15-year-old Tyrese. It wasn’t long before his funny jokes and cheeky demeanour inspired thousands to learn and connect. During the summer, Tyrese (Ty for his friends – but it’s Mr Tyrese for students!) taught nearly 50,000 people simple signs on topics like family, food and drink, and entertainment.

Tyrese on set. He's sitting on a leather chair, wearing an orange bow-tie which matches his orange Christmas paper crown. He's smiling and giving us two thumbs up.
Sense Sign School gets two thumbs up from Mr. Tyrese!

When asked about his motivation behind leading Sense Sign School with such enthusiasm, Tyrese said:

“I want more people to learn to sign, so Deaf people like me don’t get excluded. You should be able to chat to someone, whatever their disability might be. After all, no one likes feeling left out.”

Tyrese and his family have been supported by Sense since he was six months old. Ty was born with CHARGE Syndrome, which affects him in many ways. He is Deaf and only has sight in one eye. Tyrese communicates through British Sign Language (BSL), gesture and writing.

Tyrese on the holiday-themed set. On the left, just outside of the video frame, you can see his BSL interpreter, sitting on a green chair looking at him while he signs.
Mr. Tyrese, ready to deliver a holiday-themed BSL lesson!

Four penguins apart

Filming these new classes was no ordinary feat, as we had to ensure production was safe during the age of Covid-19. On set, everyone kept at least two meters apart (or the equivalent of four penguins, to put it in more festive terms).

Yule love these new signs

Sense Sign School is back for a winter term! Mr Tyrese will be teaching us a multitude of merry signs, from simple wishes like “Happy Christmas” and “Happy Hannukkah ”, to delicious dinner favourites such as “pigs in blankets”.

Tyrese on set with his mum Vicky. He's giving us two thumbs up while she smiles to the camera.
Tyrese on set with his mum Vicky

Don’t miss class!

Sense Sign School is completely free! Sign up to receive Tyrese’s classes directly into your inbox.

We’d love to see how you get on with your new signs: share your festive signing videos on social media and tag us at @sensecharity!

Renowned artist helps Sense design an Arts Manifesto

Tanya Raabe-Webber in her studio surrounded by her art and materials. Tanya is wearing a burgundy dress and has short brown hair and glasses.
Tanya Raabe-Webber in her studio surrounded by her art and materials

‘The notion of my own diversity drives my interest in people and the exploration of the human condition’

Tanya Raabe-Webber

As part of the Sense Connect programme which combats isolation and loneliness for people with complex disabilities, Sense Arts commissioned renowned artist Tanya Raabe – Webber to create a manifesto for the work. The manifesto is intended to outline a broad set of statements to support disabled people and artists during the pandemic and beyond. Each statement has been created in collaboration with the people we support and Tanya has created visual pieces to represent her thoughts and ideas.
Artist, Tanya Raabe-Webber shares her story.

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Disability History Month – Have things changed enough?

We are currently celebrating three anniversaries.  At the time of writing it’s UK Disability History Month, where we reflect upon access and the extent to which disabled people can get access to all aspects of life.  It’s 25 years since the Disability Discrimination Act made it illegal to discriminate against someone because of their disability.  This year, it’s also 65 years since Sense began: a result of a conversation between two mums who had given birth to deafblind children. Fast forward to 2020 and we have come along way. However, still there is so much to do and Covid-19 has exacerbated the inequality disabled people face.  Have things changed enough?

Catching up

Traditionally, disability rights have always lagged behind other rights. People viewed arguments about disability differently from those about sex and race, two areas in which discrimination was better understood. It was all about unfortunate disabled people who of course couldn’t work, didn’t have to use transport or needed to enjoy the same access to cultural venues in their local communities.  Disability rights legislation has made a real difference to people’s lives and gave many disabled people a greater sense of self-belief and equality.  But we still need to see more progress.

Tackling loneliness

Today, about half of disabled people in the UK are in employment, compared with about 80% of non-disabled people. 4 million disabled people live in poverty.  Too many disabled people remain on the fringes of society. Disabled people are less likely to participate in cultural activities because of negative attitudes and prejudice, inflexible ways of working and lack of transport. We share the National Heritage’s Fund ambition to address this as part of its Strategic Funding Framework.  Sense’s own research shows that 53% of disabled adults and 77% of disabled young people feel lonely every day, and nearly 1 in 3 non-disabled people avoided talking to a disabled person.  In terms of improving access, it appears that changing attitudes is the hardest battle of all. 

Image: a man taking part in an inclusive yoga class. His arms are outstretched as he smiles to the camera.
Image: a man taking part in a yoga class. His arms are outstretched as he smiles.

No one left out of life

Sense is a service provider that offers housing and community services across the country. We are committed to providing high-quality support. We want to go further and help people achieve their basic rights to friendships, accessing their community and to feel included.  Sense’s buddying programmes bring together disabled and non-disabled people based on mutual interests.  Benefits for disabled people and volunteers are reciprocal and equal: for example, a disabled person takes part in new activities and volunteers learn new skills (e.g. British Sign Language). Both parties benefit from new connections and reduced isolation.  Similarly, our inclusive art and cultural programmes draw on disabled people’s unique contributions and creativity, give them the chance to connect with professional artists and bring disabled people and non-disabled people together based on a shared love of culture

Forgotten people and families

Fast forward to the events of this year: we know that disabled people have fallen through the cracks in government during this pandemic. There is a real risk that attitudes towards disabled people and equal access to opportunities will be permanently set back.  We have learned a lot over the last period about how our society neglects disabled people and their families. There is a feeling of disbelief, dismay and growing anger that disabled people are at the bottom of the priority list and when the public hears about the growing number of deaths of disabled people due to Covid-19. 

Two women dancing back to back, holding hands. The woman on the left wears a Sense t-shirt while the one on the right has a long-sleeved green floral top.

Opportunity for change

More than ever, we need a much more comprehensive plan to support disabled people and their families, and the front-line staff supporting them.  In 2020, we have a unique and once in a generation opportunity to address this as the Cabinet Office is charged with delivering a National Strategy for Disabled People.  Tackling inequalities and access to the same opportunities, including heritage, with a true commitment to ‘levelling up’ people’s lives, must become the new reality after Covid-19. That would be something worth celebrating.

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Why I’m calling on Matt Hancock to meet with Sense

Selfie of two men standing next to each other. One of the men, Saeed, is handing in an open letter to Secretary of State for Health and Social Care Matt Hancock.
Saeed, right, and his son Azhar.

My name’s Saeed and since August I’ve been campaigning with Sense and other families caring for disabled adults, calling on government to reintroduce the community services that stopped as a result of the pandemic. 

Continue reading “Why I’m calling on Matt Hancock to meet with Sense”

What does disability equality look like to you? Looking back at the history of the Disability Discrimination Act

A group of people that Sense supports standing in front of a coach in the 1970s.

At Sense this month we’re marking the 25th anniversary of the Disability Discrimination Act (DDA), a key law passed in 1995 that protects people with disabilities from discrimination. In 2010 the DDA was replaced by the Equality Act everywhere except Northern Ireland, but many disabled campaigners fought long and hard for this law. To mark the anniversary we’re looking back and celebrating key dates in the history of campaigning by disability activists and Sense as an organisation. Check out our timeline below.

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CEO Diaries – Are you a fierce competitor or a generous collaborator?

Four hands each holding a piece of a jigsaw puzzle. All of the pieces are joined together. Are you a fierce competitor or a generous collaborator?

Sense Chief Executive, Richard Kramer, reflects on collaboration in the sector.

Since the outbreak of the pandemic, Chief Executives across the sector have been spending more time together, courtesy of video conferencing. We are much more curious about our fellow CEO’s leadership and how other organisations are responding to the challenges of Covid-19. We are more willing to talk openly and freely, share ideas and learn from each other. It is clear that we need each other more than ever, and I wonder whether Covid-19 permanently shifted the way we engage, collaborate and relate with one another?

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Ensuring nobody is left out of life #CommunitiesCan

Two women on a Zoom call. Sense Connect was set up to ensure no one was left out of life during lockdown.

Lockdown showed us how lonely life can be when the people and places we love are taken away. But, what if life was already lonely before the isolation of the pandemic?  Sadly, that’s the case for thousands of disabled people in the UK. A study by Sense, before the pandemic, revealed that one in two disabled people (53%) feel lonely every day, rising to 77% for young disabled people. And lockdown has only made things worse.

Continue reading “Ensuring nobody is left out of life #CommunitiesCan”

As government push for all children to return to school, disabled children are once again left behind

Purple brushstroke drawing of a school building. As government push for all children to return to school, disabled children are once again left behind.

As schools and education centres across the UK re-open their doors along with most of society, through our services and engagement with parents and families, we’re seeing disabled children once again being left behind in their battle to access a full education.

Continue reading “As government push for all children to return to school, disabled children are once again left behind”