Basic Income Could Bring Relief to People with Chronic Illness
Taken in '17 during a high point in Joanna’s health journey.
Imagine never being able to sleep properly. How would you feel after 24 hours? 36? 72? How would your cognitive abilities, your emotional state, your physical coordination decline if you only got 2 hours of rest every night? How would your head, muscles, stomach feel, if you were sleep deprived every day of your life?
This is what having Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia (FMS) are like - it’s the inability to be properly refreshed by a night's sleep, ever. The average person with the condition needs 8-10 hours of sleep a night to function at all. Should you miss out on sleep for any reason, it will feel like 36 or 48 hours without sleep. Now try to work like that - try going to work with your body shaking with exhaustion or crying with pain.
I’m lucky - or unlucky - that I am considered to have ‘milder’ versions of ME/CFS and FMS, as well as being severely deaf. My health conditions and disabilities could be far more impactful. However, it also means that I am considered only ‘moderately severely ill’ and able to work ‘somewhat’ by the government (up to 3 hours a day), and therefore am not (yet) considered ill enough to be eligible for AISH.
"Being one of thousands of Canadians that fall through the gaps in the social security net is an impossible situation."
Being one of thousands of Canadians that fall through the gaps in the social security net is an impossible situation. You’re in no way able to financially provide for yourself by working regularly. Yet you’re not disabled ‘enough,’ or chronically ill ‘enough,’ to receive financial aid. Instead, you survive on whatever credit cards you have while you bounce from charitable organization to charitable organization looking for health care, food bank hampers, and social workers who can get you an income-restricted transit pass. You beg the government for emergency medical benefits so you can afford your medications, and every month, you have to ask for it again, prove again you still need it. If you weren’t already permanently sick and ill and exhausted from your health condition, you would be due to the uncertainty and worry as you sink deeper into debt every month.
Because try holding down a full-time job when you’re constantly exhausted and in pain. How do you keep your boss happy when you have weekly medical appointments? You don’t. How do you hold a job when you're taking multiple sick days off a month? You don’t. I've never had one full-time job where I wasn't encouraged to quit or laid off or my health conditions became completely unmanageable after 9 months. How do you progress in your career if you never stay anywhere or if you have large gaps in your employment history? You don't. How do you save for retirement if your body hits a point after multiple months working full-time which requires taking several months off to recover, and uses up those savings you manage to accumulate while working? You don't. Instead, you work part-time if you’re lucky, always hoping each month you will make enough for rent, always hoping you won’t be sick enough times to get fired yet again.
Those of us who are chronically ill need to be focused on our health - it has to be our primary concern. Yet each month I have to worry about if I will make rent. How do I rest properly on days my condition is out of control, knowing it is literally taking money out of my pay stub? Knowing that by being sick I may cost myself my home or ability to buy groceries? Just like anyone else, I want a home and I want the ability to know I can afford to pay for it. I want to stop deciding whether to buy groceries or pay my bills each month. Even if I was on AISH, the concerns would still be the same. Plus you have to reapply every six months. That’s additional stress, doctors visits, specialist appointments. How can you focus on being as healthy as you can be, when you’re constantly having to spend all your time having to prove again that you are STILL ill? And should you ever get a bit better, or one of your conditions finally have a proper treatment or cure - you could have that aid taken away permanently, despite still being ill and disabled, and be forced to look for work after years out of the workforce while still incredibly sick.
"Knowing that I would be able to pay rent on a small place of my own even when I was very sick without going into further debt would be amazing for my mental and physical health."
Stress exaggerates every health concern. It reduces healthy individuals into unhealthy wrecks and it makes the chronically ill unable to fend for themselves. The stress of being ill, and the stress of the associated financial concerns, makes you more and more worried, which exacerbates your health conditions extensively. Basic income could change that. Knowing that no matter how weak or healthy I felt would not impact my base income would be incredible. Knowing that I would be able to pay rent on a small place of my own even when I was very sick without going into further debt would be amazing for my mental and physical health. Not feeling like I have to hoard every penny I come across for the days when I cannot work, and therefore have no income, would mean I could put more money into our economy. I could stop needing subsidized transit, Food Bank hampers, emergency health benefits, social workers, case workers, constant rounds of doctor’s notes to get those benefits. I would cost the government (and thereby other taxpayers) far less with basic income than I currently do.
With Basic Universal Income, I could feel like a whole person, not belittled or desperate or embarrassed or begging because my health prevents me from affording the necessities of life. For the first time as an adult I could feel safe, financially stable, and able to make my decisions based on more than immediate survival.
And that would mean everything.
- Joanna Farley