July 31, 2016. Well it finally rained, for a few minutes, briefly relieving the drought we have been experiencing, and while the humidity continues to press down on us, it is almost comfortable outside, thanks to a steady breeze and some shady spots. It is the mid-summer long weekend here, with the civic holiday falling on Monday, tomorrow. And instead of looking forward to that extra day off, I am feeling sorry for myself, and not just because it is an extra care-giving day that I have to get through. Every long weekend, every statutory holiday, every March Break, I feel like I have been permanently cheated. While most people get to enjoy their long weekends, or at least choose how to spend them, I have to work, and it is usually challenging and not much fun. I feel bitter because through no fault of my own I am “not eligible” for the short breaks that most people take for granted.
Before you get your tiny violin out and start playing it just for me – I am not looking for your sympathy, I just want to vent. I do have respite. I work 4 days a week, and I have Fridays off to do my errands, complete chores around the house. On Friday I have no disabled autistic kid to occupy me 24/7, no teenage boys, no husband, for half the day.
The four work days, they are actually the easy ones. I like the challenges, the stimulation, and I especially like the feeling of control I have over the outcome of my work. Any parent would agree that raising children does not typically offer that particular reward. What is so great about workdays? Here are a few points for your consideration: I have a desk job at a Not-For-Profit. I get to sit down with a cup of coffee sometimes. I don’t have to be constantly on guard for possible escape due to gates or doors having been left unlocked. I don’t have to be forever vigilant of what noises are coming from the kitchen: the sounds of the fridge being raided, the muffled MMMMM of face stuffing, the clatter of cupboards, the crash of dishes, the whoosh of the kitchen sink left on, slurping sounds of somebody drinking fetid water from a dirty pot in the sink. I don’t have to double check to see if anybody has wiped after using the toilet, or whether something other than excrement and toilet paper has been put into the toilet prior to flushing. Sometimes at work it is quiet. At work there is nobody in my office constantly perseverating vocal nonsense (usually), nobody standing 6 inches from my face repeating over and over “car ride, car ride, car ride” until it actually happens out of desperate need for peace. I don’t have to concern myself about the potentially not-so-robust construction of my newer home while my 250 lb 15 year old son, cognitively aged 2 and in a rage, jumps up and down with all of his size slamming the walls and floor. The fits of rage that occur in the workplace are sublime in comparison to the outbursts at home. So if you don’t mind, I just want to complain about long weekends in general. Especially summer long weekends, those “in my face,” anything but lazy-hazy days of summer that that I have had to forgo.
So what is the point of complaining? Why bother? Because something has to change. If every person had long weekends like mine, there would be rebellion. Ignoring the needs of challenging persons and the hardship faced by those involved in their perpetual caregiving cannot be ignored for much longer. We spend how many millions on refugees, on foreign aid? Worthy things, but not when we cannot afford to help our own most needy! People with disabilities matter. Their families matter too. We need some support. We need affordable day programs for kids, youth and adults, programs that run 7 days a week minimum 8:00am to 6:00pm, that are oriented towards those individuals that are too square to be pounded into the round hole of society, and that allow the caregivers to have a chance to make a living and live their own lives. Reliable, affordable, accessible, day programs have the potential to enable families to survive, and ensure community participation for the disabled. These programs need to have at least some public support because they are expensive to run (think liability insurance), and a private for-profit or break even model for personal gain-minded entrepreneurs is not feasible in all but the largest urban centres.
I dream on my long weekends that some day our elected representatives will put their money where their mouth is, and actually deliver integration, not just for those who are a little bit quirky, but for all. I dream that, instead of just the window dressing, the carefully wordsmithed vote buying PR, somebody actually takes grasp of the problems and attempts in good faith to solve them. I dream that some day our government will rediscover and hear the voices of the grass roots, the folks in the trenches who cannot purchase a ticket to the fundraiser, who live the reality that people at the decision-making table do not, or can no longer understand.