Blog

Not too long after Beth and I first became friends, we had a conversation about a meeting she’d had with an agency that were supposed to help her get equipment (possibly Dragon?). Beth explained how she’d started the meeting by outlining the goal of the conversation, setting an agenda of sorts to be that she would leave with Dragon at the end of the meeting. At which point I started laughing so hard I cried and couldn’t speak for several minutes.

Beth was used to navigating the able bodied world, a world in which she occupied a position of some power, having a PhD and a number of other advanced degrees and once she acquired a disability, she approached meetings with agencies mandated to help her in the same way she had approached meetings in her previous life. And got nowhere. Until our conversation, no one had told her how she was supposed to act. Because when you have a disability, the expectations are different. And to hear the way “normal” people interact with the world was so discordant that I could only laugh.

Say you approach a staff of an agency mandated to provide you with equipment X and funded by the government to do so. As such, it is your right to receive the equipment X, but in order to get your hands on it, you have to jump through the hoops. First, you have to demonstrate need – shouldn’t be a problem, right? After all, it seems reasonable. Except no one told you just how intrusive the questions will get, intrusive to the point of irrelevance. Any contact with the agency should be done with the mien of a grateful supplicant receiving unexpected charity and if you can gush about how miraculous it is, even better. To help you get what you are entitled to get and what the agency is mandated to give you, make sure you phrase any communication as a request, acknowledge that the staff is doing you a “favour,” remember to tell them how much easier they are making your life and how grateful you are for their assistance. Once you’re done doing that, tell them again.

I hadn’t realized how deeply ingrained this role had become in me until Beth started tilting at windmills, writing about her experiences in a way that exposed a system created to be unequal, designed to reflect a charity model even within a social welfare system which claimed that receiving such equipment or services was my right. Sure, on an academic level, I knew, have even written papers and articles about it, but I didn’t realize the true depth of it, because I’ve been in the system for most of my life and working the system and the people within it has become second nature. Whether I speak to doctors, nurses, receptionists at a doctor’s offices, attendants, management of various service agencies and you get the general idea, I am nice, I am grateful and I make sure that people feel good about giving me what I need. There is nothing wrong with being polite and treating people well. Not at all – in fact, I’ve been brought up to treat people the way I would like to be treated and it’s a fine life philosophy. The problem is when groveling becomes a necessary part of accessing services to which you are entitled. The problem is when if you don’t grovel, people start withholding that to which you are entitled.

I don’t know if it comes out of the medical system that likes to speak of patients as being compliant or from the social welfare system growing out of the charity model or a combination of the two. All I know is that when you have a chronic illness, doctors like it when you do what you’re told. If you start asking questions, they’re not happy and if you treat them as equals, they’re really not happy. This past week, Beth experienced yet another trip down the rabbit hole when she was trying to get yet another doctor to accept her as a patient so she can get an expensive treatment for which she has already been approved, but which requires her to have a GP. In the office of a very strange doctor, she yet again hit a wall, but this time, the doctor actually said “[i]f you try to argue in the slightest, I will not send off this referral at all!” brilliantly encapsulating the prevailing attitude of the medical profession and service organizations towards people who are ill or disabled.

If you’re not a good little cripple, you’re screwed.