So I feel that I ought to come clean about this, because I’ve been living a lie for a long time. Oh I’m “really” Disabled. That’s not the falsehood. I truly am Blind, truly do have CP, and truly do have other issues as well. The lie is that I’ve ever been truly independent – that I’ve ever truly grown up. I don’t mean learned how not to need help with certain aspects of dayly life. I mean that I’ve never taken charge myself of organizing how those needs were going to be met, even while having some very grand ambitions for what I want to achieve in life.
Now, granted, I’ll give myself that there are some valid reasons for this lack of taking charge of my own needs. I have a lot of very early trauma from medicalization. And this was later compounded by ableist bullying, which I experienced from peers, even some teachers (especially the “special” teachers who worked with me in primary school), and from some of the teachers and residence staff at the school for the Blind I eventually went to. So I’ll be the first to admit that, by my teens, I was really messed up! Getting therapy in highschool helped, especially since I was particularly blesffed in my shrink. No offense to my later therapists, but she was the best I’ve ever had! Even so, though, it’s only recently, through the work I’ve been doing in Critical Disability theory and politics that I’ve really begun to get to grips with that stuff and it’s effects. At the same time, though, there were some bad reasons for my lack of independence. Thanks to my Mom’s academic background I had the resources to at least know as much as that my attitudes, actions and behaviours were being effected by the trauma I’d experienced, even if the exact mechanisms by which it did so would take longer to tease out. And yet, even with this ammo, I didn’t struggle against the effects of my trauma as hard as I could have and should have. If anything, I kind of wallowed in them!
The result was that, for all of my teens and twenties, andfor much of my thirties, I’ve basically lived some of the worst disability stereotypes. I was lazy. Yes, lazy. And worse, I regularly used my disabilities to get away with it. Others could do things faster and more efficiently, so I let them. Oh I’d “to sometimes make a half-hearted offer to help out, but I didn’t mean it, and was perfectly happy when it was declined. In fact, I usually didn’t get around to even making such offers until whatever work was already well under way, by which time it was basically done so there really was nothing left for me to do. And I did this both out in the world and at home. As a result, my Mom, a single mom no less, ended up literally being the servant – doing all the housework, and making breakfast, lunch and dinner seven days a week, even when she had to work outside the home as well. And I had a sense of personal entitlement that let me feel that it was perfectly OK for me to exploit Mom’s labour this way.
In addition to my total lack of initiative in starting to pick up the housework, though, that sense of entitlement allowed me to feel totally justified in refusing to in any way push my comfort-zone, my very narrow comfort-zone, in order to get the help I needed in other areas. I didn’t trust “helping” agencies because of my experiences of custodialization at the school for the blind. But, instead of going to them anyway because I needed the help, and, if their was crap, getting involved in political struggles to change it, I simply refused to have anything to do with them. i was uncomfortable asking for help from my peers because, when I made half-assed, disorganized efforts at doing so, it seemed to put me in the “little kid charity-case” category rather than that of potential friend material. So, instead of trying harder to ask for help in an organized manner that would come across as competent and mature, I simply refused, once again falling back on Mom’s labour. So, every time I needed or wanted something read, I got Mom to read it (I had a scanner and OCR software, but it read so poorly in those days that I often simply didn’t bother with it). Likewise, every time I needed to travel a route I didn’t know, Mom would “have” to take me. And this became an increasing problem as, as I dropped sight and my other impairments became more noticeable, way-finding became increasingly difficult. And, instead of finding ways to break out of the social isolation I was experiencing, even if it meant getting involved in programs at CNIB or other Disability organizations because I was having so much trouble making friends among my sighted and able-bodied peers, I simply let Mom take care of all my needs for company – so much so that, at one point, she calculated that we were spending approximately 45 hours together a week.
As a result, Mom has hardly had any life other than being my full-time care-giver since I stopped attending the school for the blind and came home to attend the school for the arts, that is, since I was 14. She has not been able to have a social life of her own, or to get her own enterprises up and going, even though both of us badly needed her to be able to in order to get out of poverty. As bad or worse, though, has been that her often hidden labour has allowed me to present an illusion of independence and competence to the outside world. I have looked like I was getting out there and building a life, when, in fact, I wasn’t. I continue to rely on Mom for my logistical needs (grocery-shopping, other shopping, travel, reading, etc,) andfor my social needs, even a decade after ostensibly moving out on my own – to the point where, when Mom would come to “visit”, in addition to quality family-time, she would once again cook all the meals, do all the house-cleaning I’d neglected, shepherd me around to whatever events I wanted or want to go to, and fill in my social needs too. And these “visits” would be every week-end when she lived in town (even when she lived across town from me and travel was really difficult for her because she doesn’t drive), and they’ve turned into three, four or more week extended ?hotel-stays” in which she gets to be the hotel staff for me since she’s moved further away. And it’s wearing Mom out. Over the years, she has literally begged me, if I’m going to need that much of her help and support, to live with or near her so she can provide it to me without it totally wiping her out. But, once again, I’ve always refused, wanting to cling to the illusion that I’m managing independently. But I’ve also always refused to transform that illusion into reality either, the other way I could stop exhausting her.
So why am I writing all this? I’m doing so because I felt it was important for me to finally stop hiding my wrongs, stop hiding my lack of real independence behind Mom’s hidden labour, and come clean with my communities. As those of you who know me know, I’ve long been an ardent supporter of the rights and aspirations of people with Disabilities. Indeed, I consider myself a Disability activist, although, given what I’ve confessed here, I’m not sure I deserve that honoured label. Because, I’ve been engaging from a place of hipocracy. I’ve been attending the rallies and events and spouting the rhetoric while taking the easy way out with regard to my own independence. And worse, I’ve supported Disability and Feminist ideals while knowingly exploiting another’s labour. And I’ve always been afraid my Disability communities would discover how much I’ve relied on Mom’s labour, and either think me incompetent for not having figured out how to do better by now, and or recognize me for an ass-hole who confirms every bad disability stereotype they’ve been trying so hard to disprove and fight against. So I thought it was time to finally out myself! Because, I’m trying to stop being that ass-hole
– to really grapple with how to get my needs met, and how to live really independently instead of just the facade of it. And it seemed to me that it was important to begin that process by a little long over-due honesty.