The Nightmare I Built My Own World to Escape—My Terrible Bargain

by Shaker The White Lady

Melissa's post 'The Terrible Bargain We Have Regretfully Struck,' and all the posts that followed it, really struck a chord with me, because like so many of us here, I have had to strike my own terrible bargain. Like Lauredhel, my own terrible bargain was made in the context of my disability.

I say that I made this terrible bargain, but in reality it was made for me. I wasn't consulted about whether I wanted to be disabled: The decision was made for me, and I was left to deal with the consequences. These consequences play out every minute of every day…for me there is no respite, not even when I walk into my own home at night.

Most people don't even think about turning a tap on without hurting their hand. I don't have that luxury. I don't have the privilege of slipping a coat on in three seconds. I am not as physically strong as other people in my family; my mind doesn't process information so quickly. Because of this, they regularly make me into the butt of jokes. Perhaps some people feel able to relax and be themselves with their families, but I am not one of these lucky people.*

Every year at about this time, because I am in receipt of funding for disabled students, I get into arguments with my family. One close family member is completely against any form of 'positive discrimination' (what US readers will call 'affirmative action'). They feel it gives some students an unfair advantage. Instead of backing me up and telling this person that they are wrong, the rest of the family shuts me down, and tells me not to be so emotional.

I get emotional because: Hey, you know what? This isn't some intellectual exercise; this is MY LIFE we're talking about. But they choose not to see that, in favour of having a quiet evening.

I've tried protesting this, but it is the same scenario as above. I have no power in the situation. I rely on my family for almost everything, including transportation. Without my family to drive me in and out of town, I would spend up to four hours and five pounds a day travelling in and out to my destination, so an effective means of silencing me is to threaten to ban me from the car. If I show how hurt and humiliated I am, this is the response.

At university, I have had staff interrupt me in the middle of a sentence, which is problematic, beyond just being rude, given my particular disability. I have been contacted on my mobile by staff despite requests I not be. I have had my complaints dismissed and have been lectured to get used to decisions being made for me contrary to my wishes.

To paraphrase a sentence from Lauredhel's post, there are always people who say that you can speak up, but, as the saying goes, words are cheap. Theoretically, I could speak up. I could go to a higher authority and complain that staff have overstepped their boundaries, but the problem is that in this particular relationship, I don't have any real power. The facility where they work is the only way for me to get the funding I need, to get the help I need to function as a proper university student. If I complain, I run the risk of getting the help taken away from me.

I don't mean that they could literally cut my funding. I don't think they have that power, anyway. What I mean is they could make my life very difficult indeed. They could 'forget' to sign documents that mean that the person who takes notes for me in class gets paid. They could also conveniently forget to send off the forms that secure funding. Yes, I know, people would always say that they would never dare do such a thing, that to deny help to a student would be more than their job's worth, but what if they did? Even if people took steps to sort the mess out, life from day to day in the university environment would already have become difficult, if not impossible.

This then, is the terrible bargain in my life. To go back to Lauredhel's post, not all people mean well. The old saying that power corrupts is back in business, and while these people are rarely in positions of absolute power, they definitely have been corrupted by the little that they have. It makes me sad, because not everyone I have met has been like this. There are a few good people in my life, but I can't afford to trust them, because what if they turn out to be like others before them?

I don't trust you. I can't trust you. I am sorry for it, but I have learned this lesson from people who earned my trust, only to betray it later by taking advantage of their power over me, because they know I need them more than they need me.

I wrestle with this simple truth: How do I know I can trust you to do what is right?

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*Important note: My family (with a few possible exceptions) are the most wonderful people I could hope for. Unfortunately, they are human. They are not perfect. Nobody is.

[Terrible Bargain: One, Two, Three, Four, Five, Six.]