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GUEST POST: Experiences of the pandemic for women with a disability

Engender is currently hosting a survey developed with People First (Scotland), collecting responses from women with a disability about their experiences during the Covid-19 pandemic. In this blog, members of People First (Scotland) discuss the work they do, and share some of the experiences and issues that have been highlighted so far in the survey responses.

People First (Scotland) is a member-led Collective Advocacy organisation which supports people who identify themselves as having a Learning Disability. We work all over Scotland and the organisation is part of a wider international movement. A group of women within the membership of People First were asked to participate in the creation of a survey about the experience of women and their access to health and social care services during the pandemic. This blog post details some of their responses and captures their views in relation to this topic.

People with a Learning Disability are often marginalised and forgotten about in society and this has never been truer than our experience as women throughout the coronavirus pandemic. We had so little information when the pandemic started, no one told us what to do and there were no easy read versions of the restrictions to help us understand. For lots of people, services and support stopped completely. Some of us felt scared, alone and definitely forgotten about. This experience continues even now.

“We have had to rely on carers, family members and organisations like People First (Scotland) like never before.”

People First (Scotland) ensure we always have information about what is happening in a way we can understand. In the early months of the pandemic, there we needed information about masks, rules and restrictions. As individuals, we have been left out from the information that affects everybody during the pandemic. It is great that People First (Scotland) supported this and made sure it was available to us.

Again we were left out when it came to vaccination information and appointments, when we know that people with a Learning Disability are more at risk of dying from Covid-19, as reported by The Scottish Consortium for Adults with a Learning Disability. For more information about this you can look here.

It worries us that people with a Learning Disability are so badly affected by this disease. It has taken a lot of campaigning work from People First (Scotland) and other organisations to get it recognised that people who have a Learning Disability should be prioritised for the vaccination. Again we have felt forgotten about and lots of us have had to phone repeatedly and explain what our health issues are so we are considered.

“It feels like people don’t care about people with Learning Disabilities, but they care even less about women with a Learning Disability.”

People forget about us because not all of us have a disability that you can ‘see’. It is important that people in health and in social care remember about us and our disability. Paying attention to us and the disability that affects us is important, as is respecting and recognising that we are still equal human beings. Health is a big focus for people in the world right now because of the pandemic, but our access to health services is harder than it has ever been. Lots of us feel that it is much more difficult to get an appointment with a doctor now. This worries some of us as the doctor use to put our minds at ease.

“As women who have a Learning Disability it can be harder to communicate and talk over the phone. We feel insecure and uncertain sometimes talking to receptionists, or explaining what is happening over the phone.”

Some of the meetings we now need to have with health professionals are online on video calls. People with a Learning Disability don’t always have access to computers or other devices to set this up, which makes it difficult for us to have access to the health services we need and deserve. We are once again excluded, and this time it is digitally. You don’t have the same access to health now than you use to, especially if you don’t have a device to see a doctor face to face.

It is also really difficult to talk about personal things about women’s bodies, when you are not in a private room with a doctor. It is sometimes hard to talk if a carer or family member is in the background. If we are worried about our health, it can be embarrassing. We are worried this situation will also make reporting domestic abuse really difficult for women, because they won’t have a safe space to do it. It is more difficult now to have a private discussion with the doctor, taking away the possibility for women to talk about their lives, and for women with Learning Disabilities to realise sometimes that they are victims of abuse. Speaking to a doctor face to face feels more private and better, as it can help us feel at ease and safe.

The support that we receive as people with a Learning Disability has changed for a lot of us, and has completely stopped for many people.

“The support that we have in our lives help us to be more independent and confident. The pandemic caused a lot of support services to stop.”

Some people with a Learning Disability saw their support stop completely, making it impossible to go on with their everyday lives. Getting access to support, from social work, support workers or other services can now be a struggle, taking away from us the opportunity to live a more independent and fulfilling life.

The health of many people with a learning disability has been impacted because of the difficulties accessing health services. As a result, for some of us, our mental health has been affected. We are missing support and getting help from mental health services is very challenging. Lack of social contact makes it very difficult for women with a Learning Disability and it negatively impacts us. We have been affected quite badly because of the isolation and loneliness.

“It is difficult to talk about how we feel, because you want everybody to think that you are doing okay. But when you are ready to talk about it, sometimes, you lack the support you need to talk about your mental health”.

Some of us women in People First (Scotland) have found it difficult to get support from health if we have children who are unwell, or if we need help with them. We can’t always talk to social work without being scared that something would happen and they wouldn’t give us the help we need to stay together as a family.

“My son has ADHD and I can’t get an appointment with the GP. I worry about him. He needs a bit of extra help and with school closed it is really hard.”

We feel glad we have been able to work with Engender to talk about our experience of health and social care services since the beginning of the pandemic. It feels like someone is listening, but we hope that the people who work in health and social care services are listening too. We will continue to talk about this to ensure that our voices are heard. People with a Learning Disability deserve more from health and social care services and should always get access to the care and support they need. This is a human right, enshrined by the Human Rights Act of 1998 and the Scotland Act of the same year.

The survey can be accessed here.

You can also read a blog post from our Policy and Parliamentary Manger, Eilidh Dickson, which further discusses this survey and the Our Bodies Our Rights campaign, here.

If you do not have a disability, or prefer to share your story in another way you can still send us your experiences of the Covid-19 pandemic via our Women Covid Scot portal.

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