A lasting impact of my brain injury in 2016 is that I am terrible at filling in forms. On line, on paper, any form, any time. I can’t do it. Unfortunately, disability often means one’s life is full of forms, many more forms than most people can imagine. Too often, they are controlled by unaccountable governmental bureaucracies. They are not supposed to be unaccountable, but they are.

Take today’s article in The Tyee about getting mobility devices like wheelchairs repaired in BC. I am shocked that wheelchair users can wait months to get a simple flat tire repaired. That wait can leave them housebound and even bedbound. Who knew how incredibly difficult it is to get mobility devices fixed in BC? I didn’t. And as I continue to read, I am not shocked at all.

Disabled people and our priorities get put last all the time. Currently I am in the midst of a bureaucratic bungle, the effect of which is that I can’t get my prescriptions covered even while I pay for private insurance. It’s infuriating. It will likely take another six weeks to solve (if I’m lucky) and I’ve already been at it for over two months. And I am lucky;  I can afford to pay while this process grinds along. Many disabled folks cannot afford any surprises. Many cannot manage even without surprises because their support is too low.

Disabled people are expected to jump through a lot of hoops, even if we can’t. We spend hours navigating dysfunctional systems to get what we need. It’s always our job not only to explain but to prove to agencies and government workers that we need their help and then to fix all the problems created by how they provide that help.

I don’t know if you know a lot of disabled people but we don’t have a lot of energy all the time, and when we do, we’d rather not waste it explaining what the people who are supposed to help us are doing wrong and how they are making our lives more difficult. There’s no “normal” in the world of disability. Forms don’t work for us. We need individualized support and care.

Disabled people talk about how many “spoons” we have (sort of like units of energy) and I just used all of my spoons today on something that should have been seamless and simple. And the folks in The Tyee article describing the problems getting their wheelchairs fixed should not have to use all of their spoons doing that. They should be able to call someone to fix their chairs and other mobility devices with an expectation that repairs will be done in a timely manner. No one should be bedbound by a simple flat tire.