Disability Misery

I’m multiply disabled, by whichever model you use. I am on disability assistance and I live in Canada where I even have access to healthcare. Given all this, you might think that the fact that I still have disability related depression, that I am proof that disability really is misery. That the medical model is right.

I want to make this really easy to understand.

I’m not miserable because I’m in pain.

I’m miserable because I can’t get the strength and dosage of the meds that I need to make the pain tolerable, or even go away.

I’m miserable because my back hurts, and so do my legs, and hips, and ribs, and shoulders, and all these things would hurt much less if I could stand less, have to bend and lift less, could worry less. All of these things are possible but are kept from me.

I’m miserable because my inability to do these things without pain means that my partner has to do a greater number of household chores.

I’m miserable because I have to beg, literally beg, to be able to afford the pain medication I can get, and because I am begging, I have to get smaller amounts of weaker strength to have any hope of having enough.

I’m miserable because my continuing pain is not considered serious enough to help fix what is causing it. My conditions are responding to the meds and body ARE responding to the meds. My increased pain is caused by stress and anxiety caused by worrying about whether I am going to be able to survive financially, tomorrow, next week, next month. I can’t look further than next month because that little future is already so desperate and depends on other people’s continued generosity.

I’m miserable because the increased pain caused by my worries make it harder to do the extra things I do to try and make ends meet and in the hopes of someday being able to know without a doubt that we will be ok for months to come. This in turn makes me have to worry even more about money and so makes my pain get even worse. The advice from ALL of my doctors for ALL of my conditions is to reduce my stress, but all of them have acknowledged that they have no idea HOW I can do that.

I’m miserable because the usual proposed solution of getting a job is not available to me. In part because of discrimination against disability, in part because of lack of accessibility for my disability, and all of which are just a part of a greater problem which exists currently which allows for extremely abusive and toxic employment situations that increase anxiety, and so end up not really being a solution at all since I’m still getting sicker. Also the few jobs that are available still don’t pay a livable wage so I would still be worrying about having enough money.

I’m miserable because asking for meds to make my pain go away ends up with me getting shamed and accused of drug seeking, drug dealing, and addiction. Because the risk of addiction is seen as more important than the fact that I am in pain.

I’m miserable, because the money I receive from disability is not enough to live on. My rent makes up 96% of the money I receive from disability. NOTE: If I get a roommate, disability will reduce my monthly stipend by what they consider half my rent amount. Cheaper apartments are available but are not accessible for me – they would require me to use the stairs multiple times a day and if I want to leave the house. I am only allowed gifts up to a certain amount, unless the money is used for medical expenses. If I managed to earn money above a certain amount, my stipend will be reduced. The amount is less than what would be necessary to be able to live comfortably (by which I mean, not having to crowdfund to be able to pay bills, buy medicine, buy food, and occasionally buy gas, and if we are being really fancy, maybe even enough not to fall into a debt hole or be otherwise panicked by incidental expenses like having to fix or replace a flat tire, or to let me buy new shoes to replace the ones that are falling apart?)

I’m miserable, because bureaucracies whose main goal is to save as much money as possible get to decide which accessibility measures I actually need. I’m miserable because the standard for getting certain accessibility devices isn’t “would they improve quality of life, reduce pain and symptoms, and help them participate more in society”.

I’m miserable because accessibility is the exception not the rule, meaning that I am reminded daily that I am not wanted here.

I’m miserable because there are policies in place that mean that my partner who I love dearly, is made to suffer because I’m disabled. Not because there is something wrong with me, but because society punishes them for daring to love a disabled person. My being disabled affects her immigration application. My being disabled affects her living situation as well as her monetary situation. This is caused not by my crohn’s or arthritis but because of government decisions to MAKE those a factor.

I’m miserable because being in pain means that I am socially isolated. Not because I am unable to do anything physically, but because the resources for me to do the things I can do are not made available to me. Because I am prevented from doing anything about my pain while out in public, unless I want to risk trouble with police, security guards, or even with random strangers.

I’m miserable because when my pain prevents me from being able to do something comfortably, like talk on the phone, like focus enough to send a certain email, I am punished for this fact, rather than being given options that I could do more easily or having someone available to work with me to get things done.

I’m miserable because often the process to get accessibility are often themselves, inaccessible.

I’m miserable because many of the few accessibility options actually in place seem to have been developed by people who have no experience with disability themselves. For example: Store mobility devices that are only reachable after a fairly long walk and are also frequently not allowed to be taken all the way to the car after you are loaded down with purchases. Room in aisles or between displays not being wide enough to allow accessibility devices through, making parts of the store unreachable.

I’m miserable because new buildings that go up are still frequently inaccessible, with stairs at the front entrance or even just a curb, doorways that are too narrow to allow devices such as wheelchairs and walkers though them, few elevators, or elevators that are only accessible with a lot of trouble – like locating a key, going far out of your way, having to find a doorway that isn’t clearly marked, having the existence of an elevator kept secret (No really, this happens. I had no idea that one of my favourite Karaoke bars had an elevator until very recently. Someone needs to go upstairs to get someone to get the key mind you, but still now at least I know it is a possibility.)

I’m miserable because many accessibility services or resources assume that you will always be supervised or attended by someone who is abled. Stores that provide wheelchairs that have to be pushed, places that don’t provide assistance for the visually or hearing impaired expecting that they will have a partner or interpreter accompanying them. Because some people actually think that disabled people should all be supervised when out in public.

I’m miserable because people who have never been through what I am going through every day, who have no understanding of what I deal with, feel entitled to make decisions about what I should be doing, how I should be living my life, whether or not I really am disabled, what I need to function and survive, and so forth.

I’m miserable because the fact that this is the case is seen not only as acceptable but most people cannot even conceive of the idea that it could be or should be otherwise.

I am miserable, because the comfort of an abled person is literally considered more important than the life or needs of a disabled person. To see this you need only look at people who insist on using blinking lights despite them not being safer and being a potentially fatal risk to a group of people. Look at the fact that airlines and other places will remove a service dog if an abled person so much as complains about them. Because accessibility is seen as an option or special treatment rather than an actual fucking need.

I am miserable, because I feel guilty that I receive as much as I do, when many don’t even get that, and yet I still have to ask for help because even more than someone else is not enough to survive.

I am miserable because I am reminded EVERY DAY, that as far as society is concerned, I am not worth keeping alive. Literally once, I was told that I was not getting better fast enough and so the government service that was paying for part of my medication at the time, was no longer willing to keep paying for it. Because I wasn’t getting better fast enough with a disease that is known to sometimes never go into remission. Because improvement of symptoms and not dying wasn’t considered good enough.

I’m miserable because the very people who have helped me so much, who remind me that I am a person with value, who help me to see myself as someone worthwhile, ARE ALL GOING THROUGH THE SAME FUCKING THING. I’m miserable because my experiences as a person of disability are not only not unique, I am considered one of the lucky ones in many ways. I am forced to watch friends of mine struggle because of systems in place set up seemingly to make life more difficult for them, for no conceivable benefit.

I’m miserable because I’m literally trying to convince society every day that I am worth living, and because I grew up in this society, I sometimes need to be reminded of that as well. Not because I don’t think I’m worth keeping alive, but because when the whole world is screaming that I’m not, sometimes my self-worth gets drowned out and hard to hear.

I’m miserable because I am told that by society that I should be grateful that they don’t just kill me or let me die or put me on display in a circus. I’m told to be grateful for the misery I am put through by society.

Yes, pain sucks. Yes, it sucks my energy away, and is unpleasant, but I’m miserable because I don’t have to wait for a cure to not be in pain, I could not be in pain right now, or at the very least in a lot less pain, if only society saw me as a person instead of a burden. There are a myriad of ways that society could make it so my pain didn’t matter. Ways that we don’t have to wait for. Ways that exist right now, without needing additional research or creation but just empathy and a belief that we are worth living not just surviving.

Disability Misery

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