Why community is so important to disabled people and how it works for me

“Even though I have never met most of my online contacts in person, I still consider them to be an important part of my life”

A community that will still push you to be your best and encourage success is most important. Jess shares her perspective of why community plays an important role in the life of disabled people. Jess Long is a service user engagement officer employed by Livability, visiting services and reviewing service user experience.

What does community mean to you?

A community isn’t just the group of people that you live near to, and it’s not just the people you go to church with. It can be just a few people or a group that all have one thing in common. It might be your family, group of friends or collection of medical professionals. A community can be a valuable asset to everyone, but especially for a disabled person.

What does community need to work well?

To me, a community is much like a human body. Every organ and cell has one main objective and their share of tasks to perform. If these tasks aren’t done properly, it means others can’t do their jobs either and it’s a domino effect. For any community that a person is a part of to truly work, all involved have to do their part for it to show its true value.

Which community is most important to you?

The community that is most important to me are my friends and family. I wasn’t born with a disability, so when the disability developed, it impacted me and this community massively. I relied on them for physical and emotional support, to help me adapt to my new life and living space and to enable me to still do everything I wanted to.

In the longer term, they continue to offer as much support and understanding as I need. They hold me when I cry and they celebrate with me when I achieve success. This community is my safe place that won’t look at me any differently and still has incredibly high expectations of me.

A community that will still push you to be your best and encourage success is the most important to anyone, whether that’s friends and family or support workers and physiotherapists. It’s important for someone with a disability as they won’t treat you any differently. It’s good to have people that have got your back.

What does your role at Livability involve and what do you learn from the people you meet?

My job as a Service User Engagement Officer allows me to go round services and observe both the smaller Livability communities and the Livability community as a whole. It’s a delight to see. I speak to people who use our services and help to highlight what goes on within their community.

This keeps the conversation going and ensures that everyone involved in Livability is helping to shape its future in a way that isn’t just functional, but desirable. To be its best community, Livability will be shaped, not just by the needs of those that use it, but the wants and desires of those same people.

What frustrations have you experienced in enjoying full participation in community life?

The times where participating in community life is difficult for a disabled person, is often where there is a breakdown in communication or lack of understanding. I’ve had my team of doctors all try to do different things to fix one problem, due to non-communication. I’ve been left on a train in my wheelchair, unable to get off due to the attendants not ringing my destination and explaining that I’ll need the ramp!

I’ve also been to a conference where they moved the entire room of delegates to another room, so that I could take part. It was hardly a seamless approach to accessibility and inclusion! Having these moments repeatedly can actually deter me from taking part and makes me feel like a nuisance to those surrounding me.

What choices can people make to support disabled people get the most from their community?

Everyone can make a difference for someone. The people in my community offer support, guidance and help me shape my life the way I want it. You can do the same for someone else. Where there is a person, there will always be a community and as a wheelchair user, it’s even more important to me now than ever.

Jess Long is one of three Service User Engagement Officers for Livability in the Quality and Practice Development Team. Jess is passionate about empowering people with disabilities, making places as accessible as possible and helping the world to become a more inclusive, more disability confident society.

Watch our new film ‘Why is community so important?’