Musings on Music and Ableism (Inspired by Kanye West)

There are several adjectives which come to mind when the topic of the hour is Kanye West, and this week, media reports have added a new one: ableist. During a concert in Melbourne, Australia on Friday, West refused to perform until everyone in the stadium stood. He reportedly went as far as to check ID to verify that those not standing were actually disabled. Now, there are many things wrong with this situation.

1) It’s none of his business why a given person chooses to not stand during his concert. If someone has paid for A SEAT, they have the right to sit in it.

2) Not everyone who has a disabling medical condition is considered “disabled” on paper, and wouldn’t have “proof” to show anyone. My chronic pain means that sometimes I’m exhausted and just can’t stand for long periods of time. Do I have documentation saying I benefit from sitting to regain some energy? Nope. And neither do many others.

3) It is obscenely invasive to assume that people need to prove anything to attend a music performance.

The thing is, though, that even though this latest demonstration of insensitivity is pretty awful (and it really is, no question), we’re absolutely fooling ourselves if we believe Kanye West is the first and last (or even the worst) example of ableism in live shows.

I mean, for the audience member who uses a wheelchair to enter the Qantas Credit Union Arena at all implies that it’s at least wheelchair accessible in the first place. How many performers or their promoters book gigs in spaces that aren’t accessible at all to people in chairs? How many small-scale music venues can we name, without even thinking about it, which are basement or second-floor establishments, with no elevator? Even if a space has ground-floor access, where are the washrooms located? Are we telling physically disabled/chronically ill people that only those who can make it into these spaces, only people who never have to pee, have the privilege of enjoying live music?

Yeah, we totally are.

Every time someone opens a new club and doesn’t insist on ground-floor washrooms and a slight ramp to get over the lip at the door, they’re telling disabled people that they’re not welcome.

I get it. Space is at a premium, and there are many factors that go into renting venues for long-term occupancy and for one-off events. Sometimes, in older buildings, increasing accessibility is cost-prohibitive. It can cause serious hardship for event promoters who are doing their best to provide what they can for as low a cost as they can offer. But it’s still a problem, no matter the justification.

Kanye West was 100% in the wrong. But before you jump on the accusatory bandwagon, take a minute to think about who else is doing exactly the same sort of thing. Then ask if you’ve thought to call them out as loudly as you do West.

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“You’re obviously high-functioning autistic, though, right?”

I never know how to answer that question. Mostly because it’s a bullshit question. Today, I am not functioning very highly at all. I got up, woke up the kids, showered, and walked them to school. I spoke the entire way there, reassuring an anxious child that school would be okay today, and that they could do it. I left the school, and haven’t said a word since. 

This weekend, I was in a situation where I had to disclose my autism during a training session that had gone right off the rails for me. I was unable to attend to anything by that point because of my sensory defensiveness, and was struggling with a migraine, to boot. When I was required to figure out where to stand based on which metaphor resonated most with me as a response to a question, I was done. I sat down, disengaged, and waited for the activity to end. When the trainer asked for feedback, I explained that I was unable to participate in the activity because thinking in metaphors is a challenge on a good day and impossible on the day in question. 

And so she stated that I must be high-functioning. Because how else could I be in a teacher certification program? How else could I have been actively participating up to this point? How else could I not be rocking in a corner, banging my head against a wall? (believe me – that’s pretty close to what I wanted to be doing by then, but, well, time and place, right?) 

a) It’s none of your fucking business where my levels of “function” vs. “dysfunction” lie, unless it is directly relevant to you and unless I am comfortable sharing that information; 

b) I don’t think we have the same definition of “function.” My being able to play the neurotypical game doesn’t mean it doesn’t cost me more than I can afford at times. Yes, I am capable of accomplishing tasks in the way that the NT world requires. Can I do it at a sustained level without break? Not so well. 

Today, I’m at home, in bed. The last four days, I dealt with mind-killing pain. I walked for an hour and a half this morning, and can barely type this post now. “Too much” is relative, but wow, have I gone long past its definition for me. 

The kids’ll be home in 2 hours, and the one task I said I would do, I haven’t. I will do my best to turn on again for them when they come home, because while they get the need for quiet disengagement, they also need me to be present in ways that can feel like too much on days like today. 

Pushing through really hard stuff doesn’t make me more functional than those who avoid or melt down. I *want* to avoid. I *want* to melt down. It takes an astonishing amount of energy to force myself to stay “appropriately” engaged. Inevitably, I pay for it. In, as it goes, sweat. 

So, no. I am not high-functioning. I function. And then I don’t. Repeat repeat repeat. 

Gloria Gaynor is not enough for me (warning for possible SA triggers)

I’m so fucking tired of simply surviving my life.

The latest step in the years-long quest to find the answer to what makes me sick will be an endoscopy and colonoscopy this week. Because I have a family history of many auto-immune issues (including but not limited to Crohn’s Disease), that’s what we’re looking for. The GI doc requested that while we’re at it, I should reintroduce gluten into my body to see if he can find some damage due to celiac while he’s in there.

I have been trying to focus on feeling as well as I can through this prep process. I have been unbearably sick at times over the last three weeks, wondering every day if it will be worth it to have inflicted this torture on myself. You’d think that would be the most upsetting part of this process, but I’ve noticed in the last few days that how I’m feeling physically is nothing compared to the absolute terror I’m feeling right now.

Imagining the process of having tubes inserted into parts of my body has triggered a trauma response I would not have expected. I am feeling extremely triggered. I am feeling like every non-consensual act of sexual violence I’ve experienced is right on the surface again, pushing at my skin, stretching me too tight. I can’t breathe sometimes, it hurts so much.

This is different, I keep telling myself. This is a medical procedure to which I’ve consented. I am in control of this: I can choose to not even show up, if that’s what’s necessary. But can I? Really? I’m not in control over what’s been happening to my body for the last Gd only knows how many years. My body has betrayed me, and has coerced me into needing invasive and violating procedures to determine just what the hell is wrong with it. My body, the battleground for my trauma and my illness – it’s calling the shots.

When I had my tubal surgery last year, I didn’t have one moment of apprehension. I was completely in control of the situation, and it was, although emotionally complicated, an entirely positive experience from start to finish. So what makes this time so different? Is it because it’s connected to my mystery disease that has robbed me of so much? Is it because I’m still dealing with relatively fresh memories of invasion, violation, and betrayal, and it’s all mixing together to make a giant trauma mess?

I don’t know. There are only two things I know for sure:

1) I am TERRIFIED of what’s to come on Thursday.
2) I don’t want to be.

This is the shit I have taught others about living through sexual violence but have chosen (unwisely) to think I could avoid. You never know what’s going to trigger you, when, or for how long.

And it fucking sucks.

Loss, grief, survival, resistance

It seems to be obvious to everyone else, but I’ve been struggling with understanding why my mental health has felt so strained this year. I suppose it makes sense that I’d be feeling overwhelmed. So much has happened in a relatively short period of time, and most of what has happened in my life represents some kind of loss.

I started this year having to accept that I was too sick to work. My body rebelled against me, and has left no concrete signs as to what’s wrong or how to fix it. I worry every day when I wake up that I’m not going to be able to get out bed again, that I won’t be able to pick up the kids from school, that I won’t be able to go to school myself.

I lost my job. I knew it was a probability that my contract would not be extended, but it still caught me off-guard. My income disappeared, and with it my hope for financial security when I planned to return to school in the fall.

I lost my grandmother. I knew it was coming, probably soon, but she’s still gone and I didn’t really have a chance to say good bye to her.

I gave up any outstanding fantasy of being with someone with whom sharing my fertility would be a welcome and wanted thing when I chose to have my tubes tied. I grieved the fact that there had never been that moment of shared joy in a partnership during the years when going through another pregnancy would be a healthy choice for me. I made the right decision in choosing the surgery – I have no regrets at all. But the permanence of it left me wishing things could have been different.

I moved. I started school. I also started two part-time jobs, and transitioned the kids back into school. Nothing really to grieve there, but admittedly a lot of change and a lot of stress all at once for one little me.

Somewhere in the middle of that (and it doesn’t matter where), I was also sexually assaulted. It is what it is, I didn’t and won’t go to the police, it’s a work in progress to get okay again, and I’m not mentioning it for any other reason than, “Holy shit, that’s a lot of crap in one short period of time.” ‘Cause really? If I weren’t me, and I were talking to someone who’s 2011 looked like mine, I’d be a little worried about how they were doing.

So how am I doing? I’m grieving more than I have time for. I’m surviving (and sometimes that means nothing more than putting one foot in front of the other, making sure we have clean clothes and fresh food, and getting our bodies where they need to be occupying space). I’ve pulled away from some friends, and am trying to reconnect, because I know that isolating myself when I need support the most is dangerous for me. At times, I try to never stop moving, because I don’t want to have time to think, to feel, to process. I’ve really turned inward, to keep myself from falling out all over the place. My trust in my own judgment and in people I’ve known forever is up and down, and I often miss the obvious when people close to me are struggling with their own stuff. Eating and sleeping are inconsistent again.

I thought it would be a good idea to do a bit of a “check the oil, kick the tires” kind of psych appointment, to make sure I was more or less on the right track in terms of how to keep myself reasonably healthy. After being asked if I ever do “weird sex things” and whether my experiences of sexual assault were “true rape,” I haven’t really been that motivated to return. So I survive.

In the midst of all of this, I have pain. Pain so bad some days I don’t know what to do with myself. My body actively betrays me. My heart is stapled together after shattering so completely. And my mind? Well. Good days, bad days.

I fell off the wagon the other day. No. I didn’t fall. I stepped off. I made a choice. My entire world was chaos, and I could not find order. So I did the simplest thing I could think of to line it all up in way that I could deal with, that would restore some order, even for just long enough to take a single deep breath. I cut myself to stop the world, because it was something I knew would work. And I can’t even tell you how much shame I felt after doing it, after disclosing to someone close that I had done it, after dealing with that person’s reaction to it.

Too much has happened and continues to happen to my body without my consent.This contentious, “diseased” act, this choosing to make small cuts in my flesh – that was me. Something I chose to do, and chose to stop doing when I didn’t need it anymore. Would I have felt this shame had I gone and gotten a new tattoo? Re-pierced my nose? Aren’t they the same thing, if they satisfy that need to assert dominance over a body forced too much to submit?

I don’t have any answers. I don’t plan to make a habit out of it. It’s not something I enjoy doing. It is, however, a tool that came in handy when I needed to resist the feelings of loss, of grief, of body betrayal. I’m committed to using as many other tools of resistance as I can access.

‘Cause survival is the journey as much as it is the destination.

On being the undeserving poor: choosing student debt from a shallow puddle of options

I went back to school full-time this week. Again. I’m enrolled in a masters-level program, a professional degree that will hopefully lead to a career that fits my needs and those of my family. I managed to save enough over the last year or so to cover one of two years’ tuition, reduced my monthly expenses, and got a part-time job that fits around my school schedule.

I did everything I possibly could to avoid having to deal with the folks at my provincial loan institution again. I owe. I owe so much, I could be a doctor (almost). I have been screwed over so many times by the student loan system. I don’t trust it, and I resent having to jump through so many hoops to qualify. Before I had children, when I was doing undergrad coursework, I had to drop out of school during a major depressive episode. Every single time I’ve applied for assistance since then, I’ve been required to write a letter explaining what happened, and discussing my strategies to prevent it from happening again. Every year. It’s not enough that I had to do it once (which is entirely appropriate). To have to pull out the memories of that time, rehash my failure, my inability to function at that time, my loss (because that’s how I experience that time of my life) is painful, and anxiety-inducing, and humiliating. I know that a lot of that is my own love-hate relationship with my mental illness and that they would probably be making the same demands had I dropped out of school for a broken femur or a tumour or the death of a parent. But. No matter the reason, it’s a hurdle no one should have to repeatedly try to clear. There is no reason at all why, with the successful completion of subsequent years, this demand should be made annually. I finished a graduate degree with an A- average since that incident (ahem. while raising 2 preschoolers). Obviously, I’ve managed to get my shit together well enough to attain academic success.

And yet, here I am, back again, jumping on the gravy train. I’m at the caboose, this year being the last I’ll qualify for assistance. There’s a maximum amount of support available, you see, and I’m right at that limit. So, why more school? The answer to that is simple, and complicated.

Short story: Because life as a single parent to my children with a traditional 9-5 office-based job isn’t tenable. Because shiftwork isn’t doable. Because retail doesn’t pay enough, and I don’t think my body is strong enough for it anymore anyway.

For now, I need more flexibility to be available to my kids when they need me, and to accommodate my health when it’s not so good. I need to work towards having a schedule that is always somewhat flexible in terms of amount of vacation time (if not actual timing of vacation). I don’t have regular kids, and I don’t have a lot of back-up on a daily basis. As they get older, it’s entirely possible that at least one of them is going to need me more, not less.

I am ingratiating myself to the system, and playing by its rules, in order to finance my future ability to be available to my children. I am agreeing to pay back this not insubstantial loan, that may actually lead to a system-wide savings of several hundreds of thousands of dollars, as I position myself as my child(ren)’s adult care provider. I am increasing my capacity for resilience by slowing down my life pace to accommodate the stresses my particular set of variables creates/attracts. With luck, this will increase my overall physical and mental health, and keep my needs for accessing the public healthcare system to a minimum.

I am accepting the ongoing bureaucratic bullshit that comes with provincial student loan agencies because there aren’t affordable mental health options for me (or my kids). Because there isn’t enough support in their schools for them. Because social assistance wouldn’t begin to pay my rent. Because I’m likely not disabled enough (and what does that even mean?) to qualify for disability. I am choosing to BORROW money because the “free” money costs too much.

I’ve been accused of “hiding from the real world” in choosing to return to school. I’ve gotten comments about the amount of student debt I’ve accrued over the years, and questions about why I’d willingly choose to do so again. To those people, I say, “spend a week in my life, then talk to me about what’s real,” and “I’m open to whatever viable suggestions you have to go a different way.” So. If y’all have some other ideas, I’m open to hearing them. In the meantime, I’ll be sitting over here doing my homework.

Thank you, Jack. You will be missed.

Hi, Jack. May I call you Jack? It seems weird to call you anything else, in spite of never having known you.

Jack, I wanted to tell you how sad I was to hear of your initial diagnosis of prostate cancer. I watched as closely as any of us not directly involved in federal politics can, as your body got weak (from the disease, from the treatment). And I saw you smile your way through it, and respectfully take down anyone who dared to identify your illness as a liability.

I moved to Toronto two years ago, Jack. Moved right into Toronto-Danforth, actually. I was thrilled when I realized you would be my direct representative in the House of Commons. Not only could I say that the NDP as a political party spoke for me, but now you, its leader, were literally doing just so.

This past May, you accomplished something few could even fathom: an NDP official opposition, with an amazing 103 seats. I watched as the results poured in across the country, anxious about the increasing Conservative majority, but also dancing with joy at the vibrant orange glow across our nation’s map. I shared this incredible victory with my then-10-year-old, who begged to stay up to watch the outcome.

“Come on, Jack,” he’d scream at the TV, “GO ORANGE GO!”

There’s something you have to understand about my kid, Jack. He’s … well. It takes a lot to get him engaged in something if there’s nothing in it for him. And the political game for a kid who can’t vote? I thought I was getting myself into a fool’s task with that one. But he was mesmerized. He asked questions of the different parties, talked about platforms, and accepted when I pushed him beyond, “Oh, I’ll choose to think he’s good because you do, mom.” And sure, I’ll admit it: he was completely obsessed with your moustache. You see, Jack, my dad has always had a moustache, and my son has grown up to equate that thick lip fringe with men who are worth his trust.

I saw you once, late one crisp January night in 2006. I lived in Ottawa at the time, and I was walking down Bank Street to Somerset to catch my bus home. I saw you ride past me on your bicycle, trench coat flaring out behind you in the wind you created with your speed. I remember thinking what a fantastic image it made: the great hope of the left, cape swirling behind you, on your two-wheeled steed.

You really did accomplish something miraculous, Jack. Thank you. My thoughts and prayers are with your family at this time, and I am relieved that your body is finally at rest. You were amazing.

And my now 11-year-old will really miss your moustache.