We have long campaigned for the introduction of ‘soft roles’ around families, roles such as community builders or community navigators. Individuals whose work it is to create more welcoming and inclusive communities for people with disabilities by focussing on building community capacity and forging new relationships. But sadly, the dominant understanding is still that it is therapy, clinicians, and separate programs that people with disabilities require. If nothing else, this pandemic will be a time when we truly understood that when hard times unfold, all we really have is community and the freely given relationships in our neighbourhoods. Services have been closed for months and yet none of the funding has been redirected to people with disabilities and their families.
Leap’s vision recognised the supports that disabled children and adults require to take part as equal citizens; but saw the damage that was done to people by putting programs and services at the centre of people’s lives, by making people ‘clients’ of services and defining them by their impairments rather than intentionally growing their gifts, talents and contributions. By focussing on paid supports rather than on developing natural supports and community capacity.
We believed that an inclusive life starts with an inclusive education and that segregation in early life typically leads to segregation throughout life. We knew that it was exceedingly difficult for families to work towards the goal of inclusion without the system in parallel supporting inclusion. We attempted to identify and lobby for the enablers of inclusion such as Personal Budgets, Inclusive Education, the creation of new roles such as community connectors or builders along with the provision of workshops for families. These workshops were essential for families to develop their vision of a rich, meaningful life for their child and to connect with other families and grow their confidence and their leadership ability. In the absence of these supports to strengthen and encourage families, to build their confidence and competence and to help them push back against discrimination and prejudice, families become discouraged. Their dreams for their child and their desire to keep them on the normative or typical pathway are poorly understood, and they find themselves swimming against the tide, pushed back towards ‘special’ or segregated options.
At times funders were very excited to support our work, but lately we have been losing out to cash strapped disability service providers and the carers lobby. Families with children with disabilities are faring very badly during this crisis. People who were isolated previously, are even more isolated now. Families whose welfare has rarely been of concern are being asked to make huge sacrifices to ensure the welfare of others. Families seeking an inclusive life for their children are struggling to be heard as the language of vulnerability threatens to rewind the clock on people’s rights.
It is critical that civil society organisations continue to fight for the inclusion of people with disabilities and their families and to ensure that this issue is at the top of Ireland’s agenda as we emerge from the pandemic. The board and members of Leap will continue to work for inclusion in our own communities. It has been an honour to walk alongside each and every one of the families we have met over the last ten years. Many of us have made lifelong friendships and our lives are richer now than they were before. Thank you also to the funders who believed in our vision. Please rethink your funding strategies and make sure you are not propping up outdated service models and consider moving to long term funding based on a clear and abiding commitment to inclusion.
Thank you all and see you on the other side.
Rachel, Keara, Trevor and Dee.