Chronically build your future

 

Here’s the surprising thing my disabled and non-disabled friends. Many disabled people and those with health related and chronic illnesses feel ill at ease as if everything is out of our control. And why wouldn’t we as a lot of the time we are battling to survive whether that be managing our conditions and fighting to receive or to maintain the support needed to meet our needs in everyday life. However a lot of our architects of our world and environments without even knowing it. How so? Well those of us who may need assistance are often directing others in how we need our support and or care delivered. Whether that be personal assistance, live in care or a support worker. Or even if you’re battling with the local authority to get or maintain the support you need, self advocating or working with an advocate. All of that is a form of not only trying to get service to meet our needs but in the process of doing this without or without support we attempt to define the terms of how we need to live within the system as it stands. As such we are attempting to shape our own worlds, even the act of thinking about what we need and then attempting to define and ask for it is a form of world building we have to have an idea of that need and have a plan of how that support would work i.e defining our world. We are in the early stages of being architects of our own futures. Even for those who need more support with this who may not have the capacity to lead in this process, maybe under a DoLs, there in theory the support of staff to help you have your say in shaping how you want service to be.

I word vomited all that to say that we can still have a say in our futures. Now as much as ever it feels really dark for a lot of disabled people and that in certain countries hard won rights are being eroded whereas in others disabled people have even seen such progress. But where this is collective will there is hope. And whilst governments can roll back legislation. They can’t roll back some of the collective capital that those legislation has allowed some disabled people to build. They can cut funding but the knowledge gained from organisations that were built by disabled people, campaigns that were and still are being fought, the savvy of disabled representations and influencers in the social media; You can’t erase all that know how and if those that came before us could build movements with minimal progress made when they started then we can rebuild again. Those of us who can just need to use new avenues that open up, find new ways of working, campaigning, building. And I think it looks different in the 21st century, not everyone can be on the frontline of a physical protest, or protest at all. They are many disabled vloggers or influencers on social media that in my eyes are just as much part of the movement or message as anyone who works in a DPO or is part of a campaigning group. Writers, vloggers, muso, artist, it’s art but by definition it’s also political even if said art isn’t of disability in its subject matter. It’s all giving a voice to disabled experience in my opinion. It's part of a movement.