This all started from a workshop in 2022.
Inclusion North held a workshop at Repro Fest with Lancaster University.
Repro Fest was all about the rights to have sex, babies and be treated fairly.
The human rights article 12 says that you have a right to marry and found a family.
This means you should be able to get married and have children, even if your family or health and social care staff are worried about you doing this.
Our experts, by experience, shared their stories about not being told about contraception, having babies and good sexual healthcare.
The project name Swept Under the Carpet came from the experts saying talking to health and social care staff about sex, relationships, having babies and contraception is ignored and swept under the carpet!
In 2024, the research partnership began with Inclusion North, Ace Anglia and the University of East Anglia.
Inclusion North and Ace Anglia employed two experts by experience as co-researchers.
The project will run for 18 months. It has 4 aims:
1: We will learn from each other’s experiences to come up with new and creative ways of doing research together.
2: We will find out what is important to research by listening to, talking with, and watching what happens to people with a learning disability in our communities.
3: We will run workshops, inviting people with a learning disability and those in policy and practice roles to help us turn the issues that are most important to people into a research idea.
4: We will see how this partnership has impacted the people involved. We will also share what we have learned to guide future inclusive research partnerships.
How will we share what we have learnt?
- We will share our research findings in different easy-to-understand formats like blog posts, flyers, and videos, depending on what people want.
- We will share these with people with a learning disability and other members of the public, and people who make decisions about the reproductive healthcare and support needs of people with a learning disability.
- We will also write a research article together with community researchers.
The Swept Under the Carpet research partnership between Inclusion North, Ace Anglia and the University of East Anglia developed from a previous project with the University of Lancaster.
This project was Repro Fest, a one-day drop-in event about reproductive justice, health, and rights, prioritising the experiences of people who may be treated unfairly in reproductive decision-making.
Inclusion North’s experts by experience facilitated a session on reproductive decision-making for people with a learning disability.
The project name Swept Under the Carpet came from the experts whose experiences of talking to health and social care staff about sex, relationships, having babies and contraception are ignored and swept under the carpet!
In 2024 the research partnership began with Inclusion North, Ace Anglia and the University of East Anglia.
The University of East Anglia had researched reproductive health inequalities which have tended to focus on individual factors or ‘vulnerabilities’ – e.g., clinical, behavioural and lifestyle factors.
The provision of non-statutory services and specialist support for people with a learning disability varies, and this could make it harder, or easier, for people to get the reproductive healthcare and support that they need.
We know that these systems of support are important for reproductive health, but the relationship between them and people with a learning disability remains unclear.
The Reproductive Justice framework considers the ways that race, class, gender, ability, and sexuality intersect with reproductive rights. Where the 3 core tenets of reproductive justice are:
• The right to have children.
• The right to not have children.
• The right to parent in safe and healthy environments.
There is a clear need to address these inequalities in systems of support for people with a learning disability to be treated fairly in reproductive decision-making.
Working as a partnership, the University of East Anglia, Inclusion North and Ace Anglia aims are:
To create an equitable and long-lasting research collaboration between people with a learning disability, researchers, and those in policy and practice roles on the topic of reproductive health.
Engage with people in our communities, including people with a learning disability, to come up with a robust research agenda (and research proposal/s) that tackle the issues that matter to them.
As part of the process the plan is to
Build capacity: we will create a shared understanding of what research is (and who it is for) and work together to learn new things and improve our research and co-production skills.
Find research gaps: we will look for areas where we need to learn more and figure out what’s most important for future research on the topic of learning disability and reproductive health with some potential research priority areas.
Plan research together: we will engage with people in our communities, including people with a learning disability, to come up with a robust research agenda (and research proposal/s) that tackle the issues that matter to them. Stakeholder workshops to help us turn what is important to people into a research idea.
Test new engagement methods: we will develop creative ways to involve the community, including people a with learning disability, in our research, and see how well they work.
Create useful guidelines: together, we will make and share guidelines for involving people with a learning disability in creating research proposals that address their needs and concerns.
