9 Realities of being on Disability

Every election cycle, every time disability comes up in the news, there will be at least one mention of the lazy people who live on government assistance. It seems at least every year, some new bill adding barriers to receiving disability or attacking so-called fraud in the system will be put forth.

There seems to be this mistaken perceptions that disability is filled with abled people who are lying about being sick in order to lead the “easy life” of living on disability. This idea that fraud is rampant and that people are living in the lap of luxury.

This idea is so ludicrous compared to the realities of what it is really like living on Disability. So here are 9 and one bonus, realities of living on disability.

  1. It’s very hard to get approved.

Ask most people who have applied for disability and most will tell you that they were denied at least once. Even with my long list of diagnoses, I was denied 2 before finally being accepted at the tribunal stage. Maybe people have to go through the entire application, appeal, and tribunal process multiple times.

Even my approval was conditional on proving 5 years from my acceptance, that I am still disabled and still have “A chronic and reoccurring condition.” I have to go through the process of proving my disability despite the fact that none of my conditions has a cure.

Not only are you likely to be denied on your first go-round, the actual application itself is not easy and may even incur costs and fees. There are a series of forms and questions for your doctor or doctors to fill out. This often means having to get an appointment with them in order to give them the forms, wait for them to send them back, before compiling everything together and sending it in. Even doctors who fill out a ton of these forms, don’t always know the best thing to say to help you get approved. The ultimate decision will be made by some random federal employee, who with often no medical experience or background gets to decide if you are badly-off enough to need help.

In addition, there are a series of additional forms where you have to describe all the things that you can’t do, to prove that you really can’t work. These forms can take a long time to fill out and if you have executive function issues, they can also be really difficult. If you make any mistakes, your application will be denied.

There are people who have been trying to get on disability for years, unable to work during that entire time, who still haven’t been approved.

  1. It takes a long time to get approved.

It took me over a year and a half from the time I sent in my application to the time I was finally approved. If you factor in the time it took to actually get everything together to send it in, it was even longer.

It took six months just to hear back on the initial application. After that I have to put together an appeal and send it in and then wait to hear back. After you get denied again, you have to apply to go before the Tribunal. That means contacting a lawyer and waiting for them to schedule a court date. Luckily in Ontario there are community lawyers who handle the cases on contingency. Basically if they win, you try and pay them back. Not for their time but rather for the medical records that they had to pay for. The money you give back goes into a pool that is used to pay for the next persons medical records.

I was lucky, I ended up getting approved 3 days before my tribunal appointment, and a big part of me things this is because they didn’t want to read the two feet thick medical file that we submitted.

If I had had to go to tribunal, it could have been months before I received a decision. If it wasn’t in the affirmative, I would have to start the process all over again from the beginning.

  1. You have no financial privacy.

This isn’t an exaggeration. ODSP is allowed to ask for access to my bank account information. Every month I have to send them a list of all of my deposits. Did I get refund for something? I have to tell ODSP. Did I win a few dollars on a scratch ticket someone gave me? I have to tell ODSP. I have to account for every single dollar that may have passed through my account. I have to tell them about any money I may have made, as well as any money Alyssa has made during that month. If Alyssa had any private accounts, she would have to tell them about all deposits made on those.

If I use money I receive for medical expenses, it doesn’t count towards the max amount of money I am allowed to receive in a year. Sometimes they also don’t count payments made on credit cards or to pay down debt, but I still haven’t received a conclusive answer to that. This means that in addition to telling them about every single dollar in my account, I have to tell them how I spent it, then they get to decide if it’s a genuine need or not.

  1. You are forced to be dependent on family.

As I mentioned, ODSP has to be notified of any money that Alyssa makes. That’s because, at a certain threshold – which is significantly less than you would make even at below full time hours at minimum wage – they start taking away my benefit, until it reaches 0. In some cases I can ask for a special dispensation to keep receiving the medical insurance.

People on ODSP are not allowed to be independent unless they are completely single. I am punished for being married. I am also punished if I have roommates. If I do, the total rent allotment is cut by the amount of people in the house, regardless what share of the rent they pay. The only exception is children (I believe). This means that getting a roommate doesn’t even save me money, since the amount I save is less than the amount of money I lose.

I’m not allowed to have my own money. My partner and I are not allowed to be a two income household, as any other household might be. Not only does this essentially force my partner into being the sole provider for our family, but it also puts me and every other person on disability at serious risk of abuse. We have to depend on anything we might need: food, clothing, the ability to go out of the house, medicine, anything, on our partner.

I trust Alyssa, but not everyone is as lucky as I am. Financial domination is one of the most common abuser tactics. By controlling access to money, you control who a person is able to interact with. You can socially isolate them, thereby making them the perfect victim.

This is just one of the many reasons why the rates of abuse of disabled people are so staggeringly high.

In addition, this actually ends up making us a financial burden on our family members. It has the potential to create a sense of resentment, since we’re not able to contribute in the same way to the household income. We essentially doom our spouses into poverty, unless they can find employment that pays enough to support both of us comfortably.

  1. It’s not enough to live on.

Even when your benefits are not cut, the amount you receive on ODSP in not enough to live on. Basically anywhere. We live on the outskirts of town, where rents are cheaper. Even so, rent takes up 96% of my monthly benefit. ODSP is aware of how much my rent is, but they are only entitled to pay out a shelter allowance up to an amount that barely covers half the rent of anywhere in Ottawa. The only places within those price ranges are student dorms and single bedrooms for rent in shared houses which are never accessible. You might luck out if you can get approved for subsidized housing, but the waiting list is several years long at this point.

The only reason my benefit even manages to fully cover my rent is because I qualify for the special diet allowance, which gives me a small amount extra to buy food with for special dietary needs. Otherwise, I would be short.

A few months ago, we were receiving a little more money. Not much, but at least enough to cover ALMOST the entirety of our bills. With the money we try to earn on Patreon, we are sometimes able to cover the rest, and maybe a few groceries. That’s when I was receiving the spousal credit, a monthly extra paid to those ODSP recipients who are married. Even with that amount we were struggling. If an unexpected expense came up, we were in trouble. If we had a bad month writing wise (which often corresponds to bad months health wise), then we were in trouble. In truth, we were constantly struggling to keep our heads above water.

Then a few months ago, immigration decided that the spousal credit which was paid to me, and which I had to claim on my taxes, counted as Alyssa receiving government assistance. Our application was denied. Because our application was denied, we lost access to the credit. We no longer receive that money. But any money Alyssa makes, still counts against my benefit as my spouse.

In order to reapply for immigration and not get denied and risk Alyssa being deported, we cannot accept the credit, even though with the new application we are eligible again. For I don’t know how long, we have to deal with significantly less money than the amount with which we were already struggling. Now the pressure to raise money every month, in order to make sure we don’t drown, is even higher than it already was. Every little additional expense is like another weight, dragging us down below the waves.

The monthly benefit, even WITH the special dietary allowance, is more than $8000 before the still ludicrously underestimated poverty line (or Low Income Cut Off) for a 1 person household. It’s nearly $14 thousand below the threshold for a two person household. This threshold is determined by the government itself, which means the government is knowingly paying disabled people significantly less than their own cut-off for poverty.

  1. Gifts, Winnings, and other non-employment sources cannot exceed a certain limit per year or they will be taken out of your benefit.

I’ve mentioned that I have to disclose every single bit of incoming money I have. Every deposit into my bank account. That’s because even if the money I receive is a gift from a friend or family member for my birthday, or to celebrate something, even if it is money I beg for online through crowdfunding, even if it is a silly prize I win in a radio contest, if it’s money I got for selling some of my personal items, all of it has to be reported to ODSP, and all of it counts towards the threshold I am allowed to receive before ODSP cuts my benefits.

This means that even friends who want to help me, can also do so much before the help starts to harm me. The only exception is if I use that money on medical expenses.

The amount I am allowed to receive, still doesn’t bring me up above the poverty line btw. Did a family member pass away and leave you a small inheritance? Unless you put the entirety of it to pay down a debt, you better be prepared to lose your benefit.

  1. Not all Medication is covered.

I’ve talked about this before in relation to my medical marijuana. It is legally prescribed by a physician. I buy it from government licensed producers. It’s the only medication that works for most of my pain, especially since I can’t take most over the counter pain meds because they are not safe to take with crohn’s. My only other alternative would be opiates like dilaudid, except that because of my digestive issues, I can’t be counted on to digest pills regularly. I could perhaps give myself injections every few hours for the rest of my life, but I would be constantly sleeping, constantly nauseated or having to take anti-emetics, oh and by the way, you’re not allowed to do injections at home. Despite all this, it’s not covered.

The yearly cost of my medical marijuana if I actually purchase my full dose would be $10,220. (2 grams per day at $14 per gram, I usually buy less or cheaper strains, but sometimes when my symptoms are really bad I need stronger stuff and that means more expensive) I can’t pay my bills, how am I supposed to be able to buy my medication? That’s not all, because a lot of Alyssa’s meds (even when she WAS receiving my prescription insurance) still weren’t covered. The total cost being nearly $2000 a year.

Which means that while I am already struggling and desperately looking for a way to make ends meet, I also have to come up with a way to raise an additional $850 a month just for my meds. Pretty much a round $1000 including Alyssa’s.

So while receiving benefits for being in too much constant pain to work, constantly struggling with managing symptoms of an incredibly sensitive and finicky disease that lands me regularly in the hospital, I can’t count on being able to get the medication that helps me.

  1. If you need an accessibility device, you have to be approved by the ADP.

Accessibility devices are expensive. A power wheelchair can cost upwards of $2500 dollars and can range up to $7000. Walkers, hearing aids, scooters, all of them have enormous price tags. In order to get one, you have to apply to the accessibility device program, which covers 75% of an accessibility device for everyone, and 100% for people on ODSP. Except… you have to be approved by them first.

In order to qualify, you have to meet their criteria for needing a device.

First and foremost: you have to need the device around the house. Ignoring the fact that that’s pretty much impossible with something like say… a scooter… not every disability has device requirements for short distances. If I live in a small apartment where everything is only a few steps away from everything else, I probably don’t need a device at home, even if I might if I lived in a larger place.

But this also ignores the fact that disabled people actually do need to leave the house from time to time. At the very least to be able to go to the doctor. Accessibility devices can mean freedom for many of us who would otherwise be trapped indoors.

Second: The ADP doesn’t consider pain a valid criteria for needing a device. If the reason I can’t walk or have trouble doing so is because I causes me pain and not because… I’m physically incapable, or am more likely to fall, or some other reason that isn’t pain…

So now, while getting less money than I need to survive, I am somehow expected to be able to raise the money to get a device on my own?

  1. Many ODSP recipients have to beg, on the streets or online, just to survive.

I’ve seen so many people begging on the streets because ODSP is not enough to live on. People asking for money for the extraordinary expense of buying food to eat, keep a roof over their head. I’ve seen people who have chronic illnesses stand in freezing rain, because if they don’t, they don’t get to eat that day.

The first time I had to ask for help online, I felt like a failure. I had been told so often growing up that “I had potential”, which clearly I had failed since I was begging for money from friends and strangers. Asking for money online is just a different  My parents when they first found out were pissed off that I would tarnish their reputation like this. It was only when I explained that it was generational and too much to reasonably expect them to give me every month, that they sort of came to terms with it. The reality is though, that without that help, I literally couldn’t survive.

I have to ask for money every month, and every month there is the fear that this time, people will say it is too much. That people will start talking about how I must be a con artist, or something else, because I’m always asking for money. I’m terrified to post about stuff I make, to eat or otherwise, for fear that people think I used the money sent to me for medicine for something frivolous. The few luxury tools I have, like for my kitchen, were Christmas gifts from my parents – chosen carefully by me as what has the most potential to help us either save money, make money, or preferably both. I literally can’t remember what it is like to want something just because it brings you joy. I forced myself to add stuffed animals to my wish lists just because it was the only thing I could think of that I couldn’t find some other purpose for.

If I didn’t ask for money, every month, Alyssa and I would have not had groceries for many months. Alyssa and I would not have been able to pay our bills. Our car would be repossessed and I would have no way of leaving the house. Alyssa wouldn’t be able to afford to take the bus to interviews or to work and I wouldn’t be able to drive her anymore. Our internet would be shut off and we would no longer be able to make money online through our various means, which means we would lose even more, till finally we would be left with just the apartment, and mac and cheese. Which of course, would likely end up with me in the hospital…


  1. The Stress of it All is Killing me

Not that that would be unusual at this point. I was in the hospital just this last Saturday. The combination of overwhelming stress, coupled with a week of panic attacks, in conjunction with a cold that hit me twice as hard and for twice as long, resulted in my bowels forgetting how to work properly, which caused a non-surgical blockage and extreme pain.

I’m on high doses or even doubled doses of all of my medication. In some ways I’m improving. There are fewer obvious ulcers on my intestines as of my last scope. And yet despite that, my symptoms are getting continuously worse. No matter how many times they put me on steroids and how much immunosuppressants they pump into my blood, my inflammation refuses to go away and instead gets worse.

I’ve developed new conditions, I’ve regained conditions I had grown out.

I keep getting sicker.

And the answer for why is stress. For the last 5 years I have been in steady decline. Ever since I started struggling with trying to make ends meet. Ever since I had to take out a line of credit just to pay for one dose of my Remicade.

I’m in a state of chronic inflammation. It is causing multiple of my organs to start struggling. Long term stress causes your blood vessels to thin. It causes damage to the pancrease as it is forced to spurt out more insulin than is reasonable. It raises significantly the risk of diabetes. The inflammation makes digestion harder, so that my meds are not as effective. It causes scar tissue to form on various parts of my digestive system and increases my risk of various cancers.

The frequent steroids used to deal with the inflammation as an emergency stop gap, cause further deterioration of my hips. It causes added weight gain which increases my risk for heart attack. It even further increases my risk of cancer.

And there is nothing I can do to stop it. Short of suddenly selling several million copies of my book and getting a book deal, there is nothing I can do to improve my situation and be able to not stress for just a short time. Enough to be able to let my body rest and maybe go into remission. Enough to give my body a chance to heal, rather than spending every waking and more than a few unwaking moments trying to keep my head above water another day.

It’s killing me. Literally. And I can’t stop it from doing so.

9 Realities of being on Disability

3 thoughts on “9 Realities of being on Disability

  1. 1

    I shared that on my tiny tumblr, but you know, it’s so many words in the digital river. (Meanwhile tech trubs keep me from doing it on WordPress.) Good luck, in the most earnest way possible I say. You’re farther down a path my household has been on, and it’s quite scary. Worst comes to worst for us, I’ll be the one who is alive, probably, and a sad boy.

  2. 2

    A question for both of you: do you think that the Ontario “basic income” scheme (currently being piloted in a few communities) has any promise? Would it be an improvement on the current meagre system of benefits?

    As I understand it, the basic income amount in the pilot study is up to $16,989 for a single person and $24,027 for a couple, and an extra $500/month for people with a disability. But I’m conscious that that’s in Canadian dollars, and that the cost of living is expensive in Ontario. The model of administration they’ve chosen (where your income is “topped up” to the guaranteed minimum amount) also doesn’t remove the need for intrusive means testing. (They could instead have administered it by giving everyone a fixed amount but then taxing it back for those on higher incomes, but they haven’t chosen that option, probably because it’s not integrated with the tax system.) So it doesn’t seem like a perfect scheme, but I’d be interested to know whether you think it would be any better than the status quo.

    It also seems that another core problem with all benefits schemes is that rent is so fucking expensive, especially in major cities. The only way to fix that is to build large amounts of subsidized housing, implement rent control, and/or expropriate exploitative private landlords.

    1. 2.1

      It’s not a cure all by any means, but it would mean a substantial increase in my monthly allotment which would be a HUGE help.
      I think that realistically we need a societal attitude shift that no longer equates productivity with worthiness and especially not with worthiness to be kept alive.

      I will try to remember to write more later when I’m a bit less swamped, because there is a lot here.

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