I Still Have A Lot to Learn About Disability

'Canadian money' photo (c) 2009, Lauren Siegert - license: http://creativecommons.org/licenses/by/2.0/

It’s 2Am, and I should be in bed sleeping, but after tossing and turning, and disturbing the unhusband with my sighing, I decided to give up the battle and get up. Something happened to me today that I have not been able to reconcile in my mind.

Over the years, I have lost more than a few White friends to racism.  It is something that I have learned to negotiate like a pro.  I don’t stay up nights pondering what a proper response should have been, or whether or not my actions were correct in any given situation involving race, because this is something that I have been dealing with for the majority of my life.  Unlike race, disability is something that is extremely new to me.  In the almost six years since I have been disabled, I have experienced plenty of ableism.  It has usually come in the form of invasive questions, rude stares and the ever popular inaccessibility.  They have happened so often that I have developed rote responses.

For the first time since becoming disabled, I lost a friend due to my disability yesterday.  I have no doubt in my mind that their thought pattern was absolutely ableist, though they defended their argument with a false class analysis — but what is keeping me from sleeping — is not their ableism, but my response.  As I yelled back, defending myself from attack filled with righteous rage, I justified my decisions, explained my life and my need repeatedly.  I said personal information that is none of anyone’s business, because I felt the need to defend my need for a mobility device and its importance in the daily functioning of my life. 

One of the truths I have come to realize with disability is that it means a life of dealing with gatekeepers. We all have to negotiate the medical establishment, but in our everyday lives, disabled people are forced to explain their conditions, their need for accommodations and continually justify that these requests are a human right – a civil right.  In my fit of rage, it did not cross my mind that she had no business asking me these questions, or sitting in judgement of me to begin with.  It did not occur to me that I had a right to my own privacy, and that questioning my needs, or my decisions as it relates to my disability constitutes an act of ableism.

I argued back and explained in detail the very private details of my life, only to be told that I was exaggerating and that what I had to say was bullshit. The bottom line is, no matter what this person believes, they don’t know what it’s like not to be able to hug your children when they need comfort because you are in pain.  They don’t know what it’s like to spend a week on your back on the couch because of pain.  They don’t know what it’s like to miss meals because you are in too much pain to cook, or because though the kitchen is only a few feet a way, it might as well be miles.  They don’t know what it’s like to look out a window and see people coming and going, living their lives while you are trapped in your house watching the world go by without you.  They don’t know what it’s like to deal with a system determined to treat you as though you are asking for handouts and freebies, even as the top 1% get their tidy little tax right offs and place money in offshore accounts.  They don’t know what it’s like to be in pain because this week, you simply could not squeeze in the cost of your pain medication. They don’t know what it is to have to stretch your pain medication because you know that you cannot afford to refill the prescription until payday. They don’t know what it is to smile through tears, because you cannot bring yourself to let the people you love see you hurting.  They don’t know what it’s like to have your 11 and 6 year old boys act as a carer for you. They don’t know what it is to sit on your kitchen floor and cry, because you have just realized that you don’t have any milk for the cereal you just poured, and will have to wait for a member of your family to go and get it, because you are incapable of a simple trip to the corner store.  In short, they don’t know what it is to have your independence stripped from you through no fault of your own. They don’t know the million compromises I make everyday of my life, but the thought that I might potentially get something I don’t deserve is enough to rush to judgement and attack.

A mobility device, is not a new flat screen HD television, it’s not an all expenses paid vacation, and it’s certainly not a luxury item.  A mobility device is the difference between participating in this world and being trapped in one’s home or body.  In short, a mobility device is a fucking necessity for my life.  Being able to interact with the world staves off the depression I often suffer during the winter.  It makes me feel whole.  Being able to function and do the basic chores necessary to existence is not a fucking luxury that anyone should ever have to put off because of finances. 

I asked for help because I needed it.  Now as I am sitting here and realizing that my call for help was viewed by someone I liked and respected as begging for a handout, I see clearly the ableism in this suggestion.  It’s not just about the money, as much as it may comfort them to think that.  It’s about the fact that if you have any kind of marginalization, no matter what it may be, asking for any kind of help, respect, or accommodation, is seen as being difficult — or asking for special treatment.  The problem of course is that this so-called special treatment might potentially level the playing field just a little and we simply cannot have that can we.  We need the stratification in order maintain our unbalanced and illogical power structure.  Pyramids have a wide base and a narrow peak for a reason. 

It doesn’t matter that we used to have two computers, or that I have a 2 year old 47 inch tv, or that I occasionally buy make up and nail polish, or that I own a coach purse, which I got on sale [see I am justifying again], or that I bought my son a guitar for Christmas, or even that I spent money on a wig recently.  What matters is in the here and now, and what I need at this very second.  One need not be living in a card board box, eating at a soup kitchen to be in need.  We don’t ask the Mitt Romney’s of the world to justify making 20 million dollars a year, or the Galen Weston’s to justify making billions a year, even when we know that because we live in a capitalist system, earning that kind of income is absolutely dependent upon exploiting someone, and potentially exploiting the earths precious resources as well. Having a few creature comforts does not negate need, we have only been taught that this is the case.  Furthermore, I think it is worth noting that while creature comforts are not a need in terms of general subsistence, a level of comfort is good for one’s mental health [yes justifying again]. To many, need must mean abject poverty, while the rich walk around with a sense of entitlement that dwarfs Mt. Everest. Asking for a need is not about getting something for nothing, and if you don’t believe a mobility device constitutes a need, trade with me for a month and see how you feel.

Where has this rugged individualism gotten us?  We are so disconnected from each other that we attack those we should be allying with.  The people who are out to cheat the system are minute in number I promise you.  The real thieves aren’t the underclass, working class, or even the middle class.  The real thieves are the top 1%, and if we wait for their largesse to trickle down to us, we will spend a lifetime waiting in need.  The welfare queen driving around in a Cadillac, while her man eats T-bone for dinner is a myth. Humans are social animals – this is specifically why solitary confinement is considered torture and yet because we believe in fallacy of meritocracy, we have allowed this anomie to fester and grow to the point where our neighbour has become our enemy, and we police our communities on behalf of the very people who impoverish us.

As much as I am angry and I am hurt, I know that I learned a very valuable lesson.  I will no longer be justifying my needs, my disability or my life choices.  I know that the desire to do so comes from internalizing a lifetime of disableist and classist messages.  I will not allow myself to be distracted from the issue at hand because of any kind of latent shame.  It’s hard enough to admit when one needs help, without having to deal with someone else’s issues. If someone can truly believe that playing oppression Olympics to justify an attack, while using an ableist and classist argument is unproblematic, then for the sake of my mental health, I have the right not to accept this as tolerable.  It is a hard thing to lose a friend, but if the cost is my self worth, then a parting of ways will be better for me in the long run. 

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