Left Out and Locked Down
Scotland In Lockdown: Stories from Disabled People and People with Long Term Health Conditions The University of Glasgow Illustrated by Sophia Neilson
Acknowledgments The stories in the booklets come from people who shared their experiences as part of the Scotland in Lockdown study, without whom this work would not be possible. The work was completed by a large team of researchers at the University of Glasgow and funded by the Chief Scien�st Office (Scotland). You can find out more about this study here: h�ps://scotlandinlockdown.co.uk/. The booklets were produced by Dr Caitlin Gormley, Dr Phillippa Wiseman, and Dr Nughmana Mirza who are all based within the School of Social and Poli�cal Sciences at the University of Glasgow. All three were co-inves�gators on the Scotland in Lockdown study and they wanted to bring these stories together in an accessible and crea�ve way with the help of Research Assistants Molly Gilmour, April Shaw and Nicola Ceesay. This project was funded by the Economic and Social Research Council’s Impact Accelera�on Accounts. This series was illustrated, and made possible, by Sophia Neilson, a Sco�sh-based ethnographic ar�st and illustrator. You can find more of her work online @soofillustrates or www.soofillustrates.com. The series was translated into French by Jennifer Rieck and into Urdu and Arabic with the support of Amina: The Muslim Women’s Resource Centre.
In In March March 2020 2020 Scotland Scotland went went into into lockdown lockdown in in response response to to the the Covid-19 pandemic. COVID-19 pandemic. We were all asked to ‘stay at home’, ‘stay COVID-19 pandemic.We Wewere wereall allasked askedto to‘stay ‘stayat athome’, home’,‘stay ‘stay safe’ safe’ and and ‘protect ‘protect the the NHS’, NHS’, and and were were told told that that we we were were ‘all ‘all in in itit together’. together’. This This was was not not the the case case for for people people who who were were already already marginalised marginalised and and isolated, isolated, who who faced faced even even more more hardship hardship and and inequality inequality as as aa result result of of the the pandemic pandemic restric�ons. restric�ons.
This collec�on focuses on four communi�es who spoke to us for the ‘Scotland in Lockdown’ study, including: Disabled people and people with long term health condi�ons
People People with with refugee refugee status status or or seeking seeking asylum asylum and and experiencing experiencing des�tu�on des�tu�on People in the criminal jus�ce system Survivors of domes�c abuse and sexual violence
The images that follow represent the stories that they told us about life in lockdown.
180,000 180,000 shielding shielding le�ers le�ers were were sent sent to to people people categorised categorised as as ‘extremely ‘extremely clinically clinically vulnerable.’ vulnerable.’ Shielders Shielders were were advised advised to to stay stay at at home home and and minimise minimise contact contact with with other other people. people.
Government Government informa�on informa�on was was unclear unclear and and inconsistent. inconsistent. Disabled Disabled people people were were forced forced to to decide decide for for themselves themselves whether whether or or not not to to shield. shield.
“I’ve “I’ve been been essentially essentially shielding shielding because because my my kind kind of of illness illness doesn’t doesn’t fit fit into into the the categories categories of of shielding. shielding. I’ve I’ve just just been been keeping keeping away away from from everybody, everybody, I’m I’m not not officially officially on on the the list.” list.”
“Our members members tend tend to to be be isolated isolated “Our for a a range range of of reasons: reasons: no no close close for links with with families families or or friends. friends. This This links is essential essential and and helps helps them them with with is their mental mental as as well well as as physical physical their health. Lockdown Lockdown has has meant meant that that health. some people people were were without without some support for for weeks.” weeks.” support
“The “The majority majority of of our our members members do do not not have have internet internet access, access, let let alone alone devices. devices. Ordering Ordering food food or or services services online online is is not not an an option option for for them. them. Equally, Equally, keeping keeping in in touch touch with with relatives relatives is is impossible impossible without without a a device device and/or and/or internet. internet. This This is is causing causing distress distress and and increased increased their their isolation.” isolation.”
Disabled Disabled people people did did not not get get informa�on informa�on that that was was understandable understandable or or easy easy to to read. read. People People with with learning learning disabili�es disabili�es were were neglected neglected because because informa�on informa�on was was inaccessible. inaccessible. .
“I “I think think the the government government should should explain, explain, like like the the understanding understanding for for us us disabled disabled people, people, because because sometimes sometimes we we find find it it very very difficult difficult to to understand… understand… II wish wish they they would would give give us us leaflets leaflets with with full full guides, guides, like like pictures pictures and and words words in, in, and and it’s it’s more more clear clear and and more more sense.” sense.”
Wearing a mask was just not an op�on for everyone.
“Some “Some people people resent resent and and sometimes sometimes they they judge judge people people if if they’re they’re not not wearing wearing a a mask. mask. It’s It’s like, like, oh, oh, they they should should be be wearing wearing a a mask mask at at all all times, times, Nicola Nicola Sturgeon Sturgeon says says so... so...
...I ...I think think sometimes sometimes people people get get excluded excluded from from that that if if they’re they’re not not wearing wearing a a mask, mask, and and it’s it’s like like carrying carrying that that burden, burden, thinking, thinking, oh, oh, it’s it’s my my fault, fault, II didn’t didn’t wear wear a a mask, mask, but but people people just just don’t don’t consider consider other other people’s people’s feelings feelings when when they’re they’re out out and and about.” about.”
(Sunflower lanyard signalling hidden disabilities)
The The pandemic pandemic put put enormous enormous pressure pressure on on disabled disabled families, families, many many of of whom whom were were already already struggling struggling and and marginalised. marginalised.
“We don’t get very much respite at all and the small amount that we do get has been stopped and who knows when that’ll be back.”
“Not “Not knowing knowing what’s what’s coming coming and and how how it’s it’s going going to to affect affect me me and and my my ability ability to to look look after after myself myself and and my my kid... kid... it’s it’s been been really really hard hard feeling feeling like like I’m I’m not not being being the the mum mum that that II want want to to be.” be.”
Being Being physically physically distant distant meant meant that that in-person in-person support support had had to to stop. stop. Having Having less less personal personal support support made made itit much much harder harder for for disabled disabled people people to to feel feel connected, connected, live live equally equally and and independently. independently.
Some Some disabled disabled people people felt felt the the move move online online opened opened up up opportuni�es opportuni�es for for connec�ons connec�ons “It's all on zoom now. It's fantastic... I've been able to connect with my community... I've done so much”
Many Many vital vital support support services services stopped stopped during during lockdown. lockdown. Organisa�ons Organisa�ons stepped stepped in in to to fill fill that that gap. gap. “If “If II didn’t didn’t have have my my carers carers coming coming in, in, II wouldn’t wouldn’t have have seen seen anybody.” anybody.”
People People who who needed needed support support were were scared, scared, isolated, isolated, and and lonely. lonely.
“In “In a a crisis, crisis, we we met met with with people people face-to-face face-to-face with with adequate adequate protection protection and and safety safety measures measures in in place. place. When When we we visit visit members members at at Assessment Assessment and and Treatment Treatment Units Units this this would would be be done done outside.” outside.”
Remote Remote GP GP appointments appointments were were not not suitable suitable for for everyone. everyone. Some Some people people were were concerned concerned their their condi�ons condi�ons would would not not be be monitored monitored and and could could deteriorate. deteriorate.
“I “I actually actually found found myself myself getting getting angry angry and and II found found myself myself getting getting really really stressed stressed and and it it was was simply simply like like ordering ordering things things like like insulin insulin only only to to discover discover my my doctor’s doctor’s surgery surgery was was closed. closed. II was was really really stressed stressed because because II have have no no choice, choice, II need need insulin insulin to to stay stay alive” alive”
The The pandemic pandemic disrupted disrupted daily daily rou�nes, rou�nes, which which could could have have serious serious consequences. consequences. Managing Managing aa condi�on condi�on like like epilepsy epilepsy showed showed how how challenging challenging this this could could be: be:
“I “I use use an an app app to to take take my my meds, meds, but but at at the the time, time, I've I've also also noticed noticed that that I'll I'll also also sometimes sometimes forget, forget, or or I'll I'll just just press press the the app app to to say say that that I've I've taken taken my my meds, meds, but but I've, I've, II might might have have just just forgotten. forgotten. II honestly honestly can't can't tell... tell... so so II think think I've I've definitely definitely forgotten forgotten a a few few times, times, or or even, even, doubled." doubled."
“I saw the queues. Walking’s painful but standing’s excruciating because when I stand still for any length of time, it can be, like, tostand standin inaaqueue.” queue.” 20 seconds. It’s so uncomfortable to just… just…to
“I really can’t manage to carry the shopping up the stairs… I ended up crawling up the stairs with the stuff that needed to go in the fridge, like the meat and stuff. I just sat on the floor in my kitchen and cried before I had the energy to put anything away. Two days later, there’s still stuff strewn all up the stairs. A friend came to visit, and he put a load of stuff away for me.”
Restric�ons Restric�ons prevented prevented disabled disabled people people from from going going out out for for far far longer longer than than any any other other group. group.
“Days just blurred into one another. The only real major outside contact was going to my GP or going to a psychiatrist. That was literally the only times I’d leave the flat. So I just, sort of, lost all sense of what day of the week it was”
“My “My flat flat just just felt felt cramped cramped and and compressed compressed all all the the time. time. It It felt felt like like you you couldn’t couldn’t breathe, breathe, like, like, everywhere everywhere II went went there there was was always always someone someone there.” there.”
“I genuinely feel like disabled people have just been abandoned, forgotten about and left to try and survive as best we possibly can.”
Thank You to our Partner Organisations Aid Aid & & Abet Abet Amina Amina The The Muslim Muslim Women’s Women’s Resource Resource Centre Centre Crohn’s Crohn’s & & Coli�s Coli�s UK UK Diabetes Diabetes Scotland Scotland Empower Empower Women Women for for Change Change Faith Faith in in Community Community Scotland Scotland Families Families Outside Outside Glasgow Glasgow Disability Disability Alliance Alliance Govan Govan Community Community Project Project Health Health and and Social Social Care Care Alliance Alliance Scotland Scotland Maryhill Maryhill Integra�on Integra�on Network Network People People First First (Scotland) (Scotland) Safe Safe in in Scotland Scotland Scotland Scotland Versus Versus Arthri�s Arthri�s Sco�sh Sco�sh Refugee Refugee Council Council Sco�sh Sco�sh Women’s Women’s Rights Rights Centre Centre SOLD SOLD Sco�sh Sco�sh Prisoners’ Prisoners’ Advocacy Advocacy and and Research Research Collec�ve Collec�ve The The Poverty Poverty Alliance Alliance Women’s Women’s Support Support Project Project
Disabled people and those with long term health condi�ons form a diverse group in Scotland. We spoke to 40 people including disabled people, people with learning disabili�es, and people managing long-term health condi�ons, and 5 supporters from organisa�ons working with these communi�es. This group experienced inequali�es and barriers to realising their rights to live with dignity that were made worse through the pandemic. 2022