Have you ever woken up wondering how your government was going to put your life at risk today? Have you had your government propose torturing you on a regular basis as a reasonable way to save money? Have you had your government put your life at risk for daring to need to be admitted to the hospital because of a genetic condition? Have you been told that you are a burden on society and that you are too expensive to be worth keeping alive?
This has been my reality for at least the last month.
(Truth be told it’s been my reality a lot longer than that, but it’s been a lot more obvious the last year.)
I have a series of chronic illnesses. It may seem weird for one person to have so many until you realize that most of them are related to the same gene, so that when you get one the chances of developing the others is pretty likely. They go hand in hand.
I have Crohn’s Disease which is an autoimmune disorder where my antibodies attack my digestive system causing severe pain, bleeding, inflammation, and damage.
I have Psoriatic Arthritis in my hips which have been slowly destroyed over time and due to some of the emergency medication I have to take from time to time to keep the Crohn’s from killing me.
I also have Ankylosing Spondylitis which is a related form of arthritis that causes inflammation in my spine and can lead to some of my vertebrae fusing together over time.
There is never a moment when I am not in some form of pain which can make things difficult. I can’t work a regular job because of the frequency with which I end up in the hospital, the frequency with which I become severely ill and cannot function, in addition to the fact that the treatments for my conditions are strong immunosuppressants that put me at risk for infections. For these reasons, I rely on ODSP to survive.
I also spend as much time contributing back to society and my community, in my own way.
I’m a published author on the subject of disability. I act as a patient advocate to help people get their concerns taken seriously and diagnosed. I’ve volunteered my time with different charities, and I spend time peer-counseling people who deal with chronic illnesses and disabilities.
I enjoy my life, despite the pain and despite the illness.
I don’t want to die.
My chances of doing so have gone up exponentially thanks to the actions taken by Rob Ford’s government.
- His cuts to what is covered by ODSP insurance have put me at increased risk of a heart attack. For all the vilification that opiates receive, when your body is trying to tear itself apart internally to the point where you can’t digest oral medication, there isn’t a lot that can be administered for pain. When I get admitted to the hospital, part of the treatment ends up including high doses of opiates. This is the only time when I take opiates for pain. At home I use other means for controlling it, but in those moments, it’s the only thing that can even really be administered. Regardless of the fact that it’s maybe 4 days to a week admission, it is imperative that post admission I be given a taper dose. Why? Because after a week of taking these medications, stopping them suddenly would force my body into a dangerous withdrawal. This is not the same as addiction which is a mental and physical dependency. It simply means that my body got used to certain levels in my blood stream. Opiate withdrawal is dangerous. It causes your heart rate to speed up to potentially dangerous levels. Because Crohn’s causes massive fluctuations in weight gain and loss, because I get put on corticosteroids to treat the flare up which force my blood pressure higher, the risk to me is a lot higher. A taper dose, is basically a few days of gradually decreasing amounts, to allow my body to reduce the levels more slowly without that risk. And Ford just made it something I cannot afford. This means that after being admitted to the hospital, I will be forced to go through one of the most dangerous withdrawals medically known, for no good medical reason. I am not addicted. I am just sick, and yet I will be treated like a criminal for this reason and have my life put in danger. Their actions and words have made it clear that they consider addicts and patients the same thing. Moreover, Doug Ford and his Chief of Staff have admitted on twitter that they’re not trying to avoid Overdose or death. In fact his chief of staff has said that Fentanyl is the “best thing to happen to addicts” because it “reduces the misery”. They are not trying to reduce overdoses, they are trying to make them more common. They are not trying to reduce withdrawal caused deaths. Our deaths, in their minds, reduce misery.
- Among his proposed cuts to OHIP coverage included cuts to coverage of sedation during colonoscopies, a test I have had to undergo at least 14 times in the last decade. This test is the only way for doctors to gauge whether my digestive tract is bleeding. To check for fistulas and fissures, and tearing, and ulcerations. Even under sedation, my digestive tract is so delicate and inflamed that the procedure is often painful for me. The sedation allows me to remain still enough to allow them to do their work. My colon is so inflamed that often even the insertion of the tip of an applicator is severely painful. Now imagine what it would feel like to have a 6 foot hose inserted. Having the procedure unsedated, especially for someone with my conditions, is actual physical torture. It puts me at risk of heart attack. It puts me at risk of having my bowel perforated and torn and requiring surgery to repair it if possible. If not, it could disable me further. It puts me at risk of severe psychological trauma as I have to undergo between thirty minutes to an hour of torture. And why? Because I had the misfortune to be born with a genetic predisposition for a chronic illness, and that simple fact has doomed me to poverty. When his proposal was met with severe opposition from the medical community for this reason, he made it up to them to come up with things to give up in exchange, meaning he is literally threatening me with torture as a hostage against doctors.
- Ford is proposing cuts to ODSP services and creating a new definition of disability. I may lose the insufficient support I already receive. The amount I receive is not enough to live on already. I had to move back in with my parents in order to survive and he wants to try and cut this amount further. He wants to cut the amount that I’m allowed to make in addition to make ends meet and take more of that money away if I should manage to find work that brings in some income. He wants to make it even harder for us to get answers and information about available services by cutting an already understaffed service. It takes currently close to a year and a half, if you are lucky, to get on disability. By cutting the jobs in that department, he is making it even harder for disabled people to get on this program while also making it harder for us to work our way off of it without sacrificing necessary support and insurance. His definition change further makes the program even more restrictive when many disabled people have to make multiple attempts already because of difficulty in getting approved. People with severe conditions are struggling for years trying to get basic support and access to medication insurance to be able to get better or to survive. Many on ODSP are reduced to begging either on the streets, online, or from their friends and family to survive. Many have to rely on foodbanks to feed themselves.
- His proposed cuts to OHIP coverage would remove me from the ability to have a family doctor. I would not be able to afford it. My many conditions require a family doctor to manage the different interactions. My treatments put me at an increased risk of lymphoma which needs to be monitored regularly. My conditions put me at risk of secondary conditions developing which needs to be monitored. Not having access to a family doctor will mean I have to rely on an already overcrowded emergency system to get basic care. It will increase wait times for tests, meaning I could be spending hours with waste leaking into my body as I wait to be seen. Meaning my chances of surviving surgery when those issues are discovered are much lower. Meaning the possibility of sepsis and secondary infections are a lot more likely as are the potential for severe complications.
- His cuts to library services mean that many people living with disabilities will not have access to the internet and computers necessary to apply for services. It will prevent people from people from being able to access forms, and information that are necessary.
I am literally begging for my life.
And I am not the only one. IBD’s affect 1 in 8 people in Canada.
People’s lives depend on ODSP. Those who are too sick to work. Those who require more accessibility than businesses are willing to provide.
In an already saturated job market, disabled people are significantly less likely to be hired, but we still need to eat and live somewhere.
Disabled people are disproportionately more likely to be homeless or to be abused. The point of ODSP is to help prevent that. Ford’s changes will kill us.
I am terrified of a government that is so cavalier about inflicting pain on the least fortunate simply because we don’t have the power to stop him. I am terrified of a government that sees death as something that reduces misery. I am terrified of a government that thinks that the way to remove an inconvenience or burden is simply to eliminate the complication altogether, especially when that inconvenience is a living, breathing, human being.
I shouldn’t have to prove that my life is worth living. I shouldn’t have to justify that torturing me simply to save money is wrong. I shouldn’t have to justify my right to be allowed to live and access healthcare.
Because where does it end? Who else’s life are we willing to trade for a Buck a Beer? Who else’s pain will be require to fund horse racing for the wealthy and yet another corporate tax cut that somehow never seems to trickle down into YOUR pocket?
At this point, with all the proposed changes, the question isn’t even WILL I survive this administration, but rather how much pain I will be asked to endure before I finally beg for death?