Thread by @sweeneykitkat

@DisabledinCa @fordnation Being disabled in Canada means first being told you are overweight, and you should be happy your illness is making you thinner, while you are throwing up everything. The first doctor you see asks you, “How much pot would you say you smoke a day?”

when you do not drink, smoke, or do anything of that sort.
Being disabled in Canada means spending 3 years having a doctor telling you to "wait and see" while your loved ones watch you wither away physically and emotionally. Over time you see 3 psychiatrists for

a possible eating disorder but don't have a Gastric Emptying Study done until 2-3 years to see if your stomach is working. You then retake that test exactly a year later, because your last results were deemed inconclusive, but no one thought a second look would help at the time.

Being disabled in Canada means having a doctor finds a medicine, the only one that actually helped symptoms with little side effects back in 2012 but then refusing to keep using it because, "He asked around and the Ministry probably won't approve compassionate coverage for it"

Being disabled in Canada means losing over 100lbs, then being told your body is too weak and you now have chronically low electrolytes. You get a free trip to the ER almost every 2 weeks, and when your ER doctor tells you to get in contact with your specialist,

he doesn’t return your calls, then acts surprised at the 6 month check in when he discovers you were in the ER at all. You are referred to an internist who suggests tests, but your specialist has decided they are not worth investigating.

Being disabled in Canada means ending up in ER TWICE in 2015 within 6 hours while you're bloated up like a whale because you can’t use the washroom, but in the first visit your blood tests were fine so time to go home. You come back but happen to meet an incredible specialist;

your saving grace and he informs you that you are bloated from undigested food mixed with the inability to use the washroom. They found it with one ultrasound, could have saved you the additional 6 hours of suffering if they had done that during the first visit.

Upon meeting this doctor, you think everything is going to get better and it does a little bit but . . . Being disabled in Canada means also discovering that it was stronger version of the medicine your last specialist refused to get, that ended up saving you in hospital,

and lucky you it’s over $400 a month because you need it 3 times a day. Your amazing new doctor works his ass off for half a year to help you acquire this one medicine that could save your life, only to have to APPEAL the request to the Ministry of Health, ending his letter with:

“If this medication is withheld from her, I fear she will revert to the severe disability of her bowel with resulting severe malnutrition, fluid and electrolyte abnormalities that will surely threaten her life. I don’t know how to make this case any more powerful than it is.”

You get the medicine, things ease up a little, you regain some weight, but things are still hard. You learn that past tests, smaller ones that didn't seem important had showed your dysmotility but were not investigated thoroughly.

Your electrolytes are finally managed until the liquid supplement is discontinued, and the Ministry is telling your new family doctor to stop submitting requests for it, it is not being made anymore.
Now we come to 2020 . . .

Being a disabled Canadian in 2020 is hearing everyday on the news that Covid-19 is not that bad and only the elderly and ill can die from it. You remember being a healthy 20-year-old, catching H1N1 and how it took your schooling, your job, and your health.

You hear grown adults debating the semantics of why wearing a mask is taking freedoms, while they tell you to just stay locked up since you are old or sick. You wear your mask despite being nauseous and sore to help protect them, but not everyone shares that protection with you.

They say if they get sick, they will just deal with it, but they don’t know what you’ve learned from personal experience; sometimes just dealing with it isn’t enough.

Being a disabled Canadian in 2020 is hearing how no adult can live on less than $2000.00 a month and wondering how you survived the last 10 years of Hell; thank god for your loving family.

You watch the government on TV, finally hearing them say you matter months later but then watching them squabble like children as they make any relief they promised contingent on other “more important issues” like attendance to meetings.

The government deems you worthy of a simple $600.00 payment, one that with your DTC you might get but it unfairly leaves out a huge number of others who are suffering as well. Your support offers an extra $100.00 a month but a box of masks is $40.00,

and you now need wipes, sprays, cleaners, and all sorts of fun new equipment to go with your other medical needs. This is also offered by the same people who you can barely get on the phone or were not there the few times you went into their building.

Finally, being a disabled Canadian in 2020 is the agonizing daily pain of knowing that you may never find or marry your true love because you are too broken to be financially stable and loved. You have additional costs because your body does not work properly on its own,

but that is no reason for you to expect the same stability a healthy adult requires. Canada cannot have disabled people receiving enough money to be considered above the poverty line, that would be “a windfall”.

And if you do find that lucky someone, they will be so lucky to have you as a burden and their income deducted.
My point of writing this is not simply to vent; I want to others to gain perspective on what some are going through.

This pandemic has been extremely hard on everyone, but things were hard BEFORE the pandemic for those of us with disabilities.
#DisabilityRights #ODSP #EqualityForAll