Running On Empty

My life quite literally runs on a battery. If my chair is not charged, it's like having my legs give out. Though I've had no problems with my chair battery of late, I've had problems with the battery of life. School is always a bit of an adjustment because its the point where everyone realizes that, like it or not, a giant chunk of life will be spent on assignments and classes. While I very much enjoy being back at Kings with friends and classmates, I already feel like the battery of life is draining. You may be reading this and thinking: "it's only the 2nd week of school, chill out!" Trust me when I say that school is not the cause. It's actually one of the places that I know what to expect from everyday. The cause of the battery depletion is the company that boasts that they make independent living easier. Let me clarify that the majority of my assistants are devoted to their work and reliable. However, the management is absolutely awful. Every year around this time, in spite of sending my school schedule, I fear them not sending someone at my requested a times. There has also been a major problem with being understaffed, which means that I may have a time and an assistant scheduled, but as anyone is liable to quit at anytime, it means nothing.

Being short staffed, the management deals with us much like a jigsaw puzzle, cutting times anywhere they see fit. Though I understand that sometimes this must be done, it seems to be happening more often than not. One might think that a time cut is not a huge deal, but it's the difference between a rushed job and a thorough one. Another common occurrence is the sending of helpers you've never met before. While I could no doubt handle them in the day, they are commonly sent at the times when I'm least alert, morning and bedtime. The most irritating thing about all this, is that the scedulers and the government alike, have no inkling of what it's like to live with a disability. So cutting bookings and funding is as easy as pressing the tempting red button. You may be wondering, "how do you get yourself out of this mess?" I am on the wait list for the supportive housing, which essentially has help available anytime I need it. Unfortunately you have to wait many years for an opening, and so far I've waited 4 In a perfect world support companies would be run by the people facing the disabilities, as they would have a better insight and understanding of what is needed. With so much uncertainty, it's no woner my battery is running on empty...

Karli