Community
The importance of fostering strong, inclusive and supportive community networks frequently emerged during my research. The consensus was that community networks are essential for disabled people as they can reduce feelings of isolation and loneliness. In a UK study, 61% of disabled people were found to be chronically lonely, and this was even higher (70%) for young disabled people.
I found that encouraging disabled and non-disabled people to interact and learn from each other helps to dispel fear and prejudices and encourages disabled people to become part of a social fabric and not just observing from the sidelines.
No person is an island. We all need support and we all need connection; this is central to our wellbeing.
A number of disability organisations have the goal of “helping people with disabilities achieve independence.” However, I was introduced to the the concept of interdependence by a researcher in Australia whereby a person exists in a community to which they contribute and from which they receive assistance. Whilst I wondered if this negated independence for disabled people, the researcher highlighted that interdependence was a support system that actually enabled autonomy.
In my own experience, non-disabled people tend to think about disabled people very often with a focus on the dependence. Dependence on others to get around, to dress, to use the toilet, to communicate.
But are any of us truly independent? No one exists in isolation, and our lives are enriched by the relationships and connections we have with others. For disabled people, the myth of independence can be particularly damaging. It places unrealistic expectations on them to navigate a world that is often not designed with their needs in mind. It overlooks barriers such as inaccessible environments, discriminatory attitudes and limited access to support services.
“I need people to help me lift items, carry things, park my car. My accessibility is dependent on the people around me. I couldn’t do it without them. I need and rely on others. That’s just how it is”
If we reflect on the Maori model Whare Tapa Whā, we think about how the four walls are interdependent; a weak wall represents vulnerability, demonstrating that neglecting any aspect of wellbeing compromises the stability and strength of the entire structure. Our wellbeing is as interdependent as we are. Whare Tapa Whā underscores the role of whānau (family) in providing emotional and social support, stressing that a strong support network is crucial for mental and emotional wellbeing.
Crann is an Irish charity which provides life-changing solutions for children, adults and families living with neuro-physical disabilities.
They provided me with deeper insight into their unique Model of Care which focuses on six key areas, inspired by core components of whole family well-being in the 2Gen approach. This approach recognises that the wellbeing of children and their parents is interconnected, and by supporting both generations simultaneously, more sustainable and impactful outcomes can be achieved.
They take the family as a unit and ask ‘what do you need as a family?’
A pioneering model and I can see how clearly this can offer substantial benefits. From my experiences with various organisations and individuals, it has become evident that a robust support system, in whatever form it may take, is crucial for disabled people's wellbeing.
However, during my time at Side by Side Advocacy in Australia, I asked what about disabled people that don’t have someone in their corner? What about those without a family or support system? How do you seek out those hard-to-reach people who desperately need support? The answer, as I learned, is that this remains an ongoing and arduous battle. This isolation leads to limited access to essential services such as healthcare, education and employment opportunities.
This is a huge challenge and one that needs addressing in the UK. I think of isolated groups here in the UK, people unable to get the support they need purely because they don’t have the support system around them or the awareness of what support that can access.
Addressing this challenge is paramount. It requires a concerted effort from all stakeholders, particularly the government. While decision-makers and service providers recognise the profound impact of lacking support systems, the solutions often fall short. Many programs are designed with the assumption that individuals have a basic level of support or advocacy, but this is not the reality for many disabled people. It is not just a matter of implementing new programs but of fundamentally rethinking how we design and deliver support to ensure that no one is left behind.