#CovidLeadersList: People with learning disabilities and autism call for greater understanding and representation following the pandemic

“We must celebrate stories of everyday strength and resilience”: People with learning disabilities and autism call for greater understanding and representation following the pandemic

• 93% of people with learning disabilities or autism feel more isolated from society due to the pandemic
• 76% have been made to feel like they do not matter, compared to other people
• 75% worry that after the pandemic, they won’t get the same opportunities they had before
• 97% feel government should do more to address their specific needs
• 97% say it’s important that more people understand how coronavirus has affected people with learning disabilities and autism
• The research coincides with the Dimensions Coronavirus Learning Disability and Autism Leaders’ List, launched on International Day of People with Disabilities

New research reveals the extent of isolation experienced by people with learning disabilities and autism across the country due to the coronavirus pandemic, as they unite to call for more understanding, representation and opportunities across society, during and after the pandemic.

The research from Dimensions uncovers a collective sense of exclusion, with 93% feeling more isolated from society due to the pandemic and 97% calling for more to be done by government to address their specific needs.

Encouragingly, the hardships faced during this year have inspired people with learning disabilities to see a more positive future. Seeing this year as a catalyst for change, 67% are hopeful that more reasonable adjustments for people with learning disabilities and autism will be considered in the future, and 57% have been inspired to get more involved in politics and decision making.

The research has been published alongside the Dimensions Coronavirus Learning Disability and Autism Leaders’ List, launched in association with Learning Disability England and VODG. The List is a special edition of the UK’s first national list recognising people with learning disabilities and autism who are challenging stereotypes and entrenched social prejudices. This year’s List celebrates those who have made special efforts to make communities better for themselves and others during the pandemic – tackling entrenched social biases by helping others and overcoming challenges of their own.

Sarah Walters, Campaigns Manager at Dimensions, said:

“It’s incredibly inspiring that, despite the challenges faced this year, so many people with learning disabilities and autism continue to achieve remarkable things and are more determined than ever to see a brighter, more inclusive future.

“Covid-19 can’t be an excuse to sit back and do nothing. Our research should be a wake-up call – the pandemic needs to be a catalyst for change for us to do more to listen to and understand the lives of people with learning disabilities and autism.

“We are so proud of, and inspired, by this year’s Leaders. Now, more than ever, we must stand with them to help tackle the inequalities they face every day.”

Raising awareness and understanding

The pandemic has been challenging for everyone but has created specific and significant issues for those with learning disabilities and autism, who have experienced disruptive changes to routines, shielding restrictions, and being unable to see their loved ones.

As a result, 97% think it is important that more people understand how coronavirus has affected people with learning disabilities and autism.

Max Green, who has autism, OCD and epilepsy, has gone above and beyond to change this. Alongside his full-time job in IT, Max is an active YouTube blogger and used his time in isolation to create videos informing and educating audiences on the impact of coronavirus on people with autism. He launched a 10-part series titled ‘The Autism Connections’ where he interviewed a variety of people with links to autism about their knowledge and experiences.

Aaron Senior, who has autism and was born with a rare genetic disability called Kabuki Syndrome, works as a Lived Experience Advisor in NHS England and Improvement and is passionate about ensuring people like him are heard and understood. During lockdown, Aaron had to cope with self-isolation, being separated from friends and family. He took it in his stride and used his positivity to support the NHS autism team to understand the challenges faced by people who were shielding – leading to the development of accessible Covid-19 resources for people with autism and learning disability.

Isolation from society

With the experiences of people with autism and learning disabilities during the pandemic largely missing from public discourse, coupled with reduced community interaction, 88% feel that the pandemic has made it easier for society to forget about them.

To combat feelings of loneliness and social isolation, Molly Kirby set up the Friendship Group for people with learning disabilities or autism in Warrington. Molly has autism and wanted to help others who, like her, might struggle with feeling shy and anxious around other people.

During lockdown, Molly recognised that keeping connected was more important than ever and began to lead group meetings via Zoom. Her sessions have helped to connect dozens of isolated people in the area and allowed them to bond over shared experiences in these challenging times.

Kumudu Perera, who was born with a learning disability, has a real passion for helping others. Before the pandemic, he volunteered for a number of different charities, helping with local community campaigns. Lockdown brought an end to his in-person volunteering but didn’t stop him from wanting to help. He started volunteering as a Phone Buddy at My Life My Choice Project, which offers friendship and support to people with learning disabilities. Kumudu loves the chance he has to fill other people’s days with happiness and help take their mind off things that worry or upset them – making them feel they are not alone.

Politics and the pandemic

Only half (50%) of people with learning disabilities and autism feel that they have been listened to and respected by government in its response to the pandemic. As a result, 76% have been made to feel that compared to other people, they do not matter.

Becki Parker, who has autism, was concerned by the slow pace at which easy-read versions of vital information on coronavirus were being produced. Taking matters into her own hands, she dedicated her time in lockdown to working with Inclusion North to produce daily videos and coronavirus bulletins, ensuring people with learning disabilities and autism were provided with the accessible, accurate updates they needed to stay safe.

Becki has also campaigned on the issue, creating and sharing a video addressed to Prime Minister Boris Johnson, calling for more accessible guidance regarding coronavirus to be made available.

Like Becki, 57% of people with learning disabilities and autism now want to be more involved in politics and decision making as a result of the pandemic.

Achievements over lockdown

Many people with learning disabilities and autism have overcome major hurdles during the pandemic and made progress in various aspects of their lives. 70% feel proud that they have learnt to use online communication tools, stayed in touch with their families and friends, or helped others to feel better during lockdown.

One person who is particularly proud of their achievements is Victoria Elizabeth Smith. Victoria has a learning disability and, throughout her life, has struggled with a lack of confidence due to the way she’s been treated. To help others like her, she works as a Gig Buddies assistant for Stay Up Late, a project that pairs people with and without learning disabilities in Sussex to develop friendships and go to events together.

Victoria quickly adapted during lockdown and has been running virtual coffee mornings and socials for participants. She even starred in her own comedic one-woman show, as part of an online festival, attracting over 1,000 views. Over the course of the year, Victoria’s confidence has improved ten-fold and she has set herself a new goal of one day performing at the O2.

The Dimensions Coronavirus Learning Disability and Autism Leaders’ List was announced on 3rd December and celebrated in the evening, at a virtual ceremony hosted by the winner of the Dimensions’ 2019 Leaders’ List, Murray Bruce, and his dad and BBC Radio 2 presenter Ken Bruce.

Liam Bairstow, the star of Coronation Street and the winner of Dimensions’ 2019 Leaders’ List, said:

“The coronavirus pandemic has impacted the lives of everyone in ways that, only a few months ago, would be difficult to imagine. For many people with learning disabilities and autism, the pandemic has been a period of anxiety and uncertainty, as our daily routines changed beyond recognition.

“And yet, it has also been a time of people persevering, coming together and looking after each other. It’s wonderful that Dimensions’ special Coronavirus Learning Disability and Autism Leaders’ List celebrates those stories of everyday strength and resilience in this extraordinary time.”