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.

Karolina and her guide dog standing in front of a piece of street art - a painting of wings.

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.

Turning my sight loss 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.

A graphic with a picture of Karolina and the quote: "Turning my sight loss journey into something positive and empowering is very important 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 of Bath – 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.

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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. 

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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.

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What is the plan for social care?

Two men sitting outside talking. What is the plan for social care?

The pandemic has had a devastating impact on social care and the people who rely on it. At Sense, our Forgotten Families campaign has revealed that a third (34%) of families with a disabled loved one still have not had any care or support reinstated since lockdown has been lifted. The Government has received considerable criticism from the press and Parliament for how it has handled support for social care. As a result, Government has released a new plan for the winter which sets out how social care will get the funding and resources it needs. What does this mean for Sense and the people we support?

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Disabled adults and their families remain forgotten in government’s plan to get society back to normal

A man and a woman sitting at a kitchen table looking at the camera. Disabled adults and their families remain forgotten in plan to get society back to normal

Through our Forgotten Families campaign we’ve been highlighting the experience of Jane’s family, who’ve been struggling to support their 20-year-old daughter Faith throughout the pandemic without support. But we know Jane and Faith aren’t the only family dealing with the devastating impact of having their support withdrawn overnight. Our recent research, showed that 75% of those who had support withdrawn didn’t receive any warning before this happened, and a third of families are still waiting for any support to be reinstated.

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“I had to get my point across that the Government has ‘fallen foul’ of its responsibilities”

A screenshot of the website with a group of people having a meeting.

During my time at Sense I have had the opportunity to attend lots of events and meetings to represent my community and speak on behalf of other Deafblind people. None quite so nerve wracking as a live streamed, virtual, parliamentary committee meeting though!

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Is it possible to articulate a better future from this COVID emergency?

A group of people standing in a circle smiling. A woman is signing.

Across the world, we are taking extraordinary measures to stop the spread of Covid-19. This crisis has a profound impact on every aspect of our lives. Those that watch the news have spent the last two months acquiring a deeper understanding of the inequalities facing different communities. People are much more emotionally engaged and want to see change. They care more about the welfare of others and what it takes to improve people’s lives – many want a better society to emerge from this crisis.

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Whilst society moves forward we can’t allow disabled people to be left behind

A man and lady hand on hand signing to make sure disabled people don't get left behind.

Over the past few weeks we have all had our lives turned upside down. Whether directly or indirectly affected by Covid-19, we have had to change how we work, see friends and family or go about previously simple tasks like doing our food shopping or exercising.  At Sense we know that this has been truer than ever for the people who we support and their families.  We have had to adapt how we deliver our services, and know that changes to routine have been difficult. 

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Government must deal with the social care crisis once and for all

The news has been dominated by stories about coronavirus in recent weeks, and the potential impact it could have across all levels of society. So it’s not surprising that coronavirus was a main focus of today’s Budget. The Chancellor, Rishi Sunak, announced the Government is creating an emergency response fund to ensure the NHS and other public services have the resources needed to tackle the impact of coronavirus. Initially set at £5 billion, it will also support local authorities to manage pressures on social care and support vulnerable people.

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