Writers Block

Writers block! I haven't been able to write in a very long time. When I do, it sits blank. I have many books, blogs, articles, posts, and sketches sitting in my brain, fading away while waiting to go nowhere fast. The room fills up, the stink and overly warm feeling of the room fills up before becoming ice cold.

Broken Systems: Canadian Healthcare in Reality

I am sick and tired of being let down by our systems. This time it is my doctors office; I do not single out the doctors as the receptionist is a constant in the office, regardless of who is the doctor. 

Please allow me to share:

Last summer, my job was showing signs of taking a toll on my health. I consulted my family doctor and decided a day away per week from work would do me well for six weeks. During those six weeks, the disability coordinator in Human Resources at work left for a new job and the doctor left the province to move closer to home. The new doctor started near the beginning of September. It took me several days over two weeks and several phone calls each day to get an appointment at the end of the first week of November. I was there for my afternoon appointment ahead of time with a list. Rather than the usual kind of family doctor appointment, I had to go pick-up my son from daycare before they closed and go back to the office with my son for my appointment, which ended up being super short, distracted, and dismissive. I did get a note for accommodations at work that she did not seem to really understand. She didn’t want to prescribe my medication either, so off went a referral. Despite previous notes on file with Human Resources, work required further documentation from my doctor than the note. Earliest available appointment was March 27th. I finally got fed up enough of being mistreated at work and my health failing from the toxicity that I gave notice in December to leave work at the end of March. A whole series of stressful events ensured at work thereafter. Workplace stress became so overwhelming that in my second last week of work that I called my doctors office in a bad state and, as usual, they had no appointments available. Thankfully the doctor on call was one of the rare breeds willing to handle an employment oriented case for a patient not their own. The on-call doctor put me off work for the rest of my tenure and for the next three months as the toll on my health was quite evident. Darn good thing too because I was supposed to see my doctor the following week to the on-call doctor as scheduled, but the appointment time written down the card was wrong by the receptionist. So, the appointment was moved to the next month at which time I requested a not for EI in case they needed it so my doctor wrote a note to express that I left my place of employment due to workplace stress exacerbated my health symptoms. Good thing because EI did need it. Of course, when you unemployed, all of the sudden you cannot work, you engage whatever insurances you have available as soon as you remember they exist. I had pre-booked an appointment with my doctor for the last week of June where I also left insurance paperwork to be filled out. At that appointment, she also finally believed me that I have health issues and said she would send a referral for my severe fibromyalgia. That said that is only after I gave her the date of my last specialist note according to my notebook records and she retrieved my file to look at it. I called the doctor a month later and followed up with the insurance company to keep them in the loop when I also learned that policy is that after 150 days I am responsible to pay the doctor directly myself. I tried to follow up again a couple weeks later with the doctor. I followed-up with my doctors office to get the name of the specialist to whom they referred my case for two reasons: due diligence to ensure they did actually sent it and to call the other office to ensure receipt. The receptionist said she would call me back with the name of the specialist and when she called me back she said it was sent and then put me on hold to look up the name of the doctor when I asked again because I was not leaving the phone call without that information. I am now on a cancellation list with the specialist. Last week my file was closed with the insurance. Today I received a call saying that the form is ready for pickup at the office. I relayed that my file had been closed by the insurance company as it had been inactive for too long and that I am presently unable to cover the fee. The receptionist retorted that the doctor had spent a lot of time on my file and that next time she will have to ask for the money upfront. She also argued that the doctor has not had my file that long. After the call, I counted that it will be 11 weeks tomorrow, so yea. I am sorry that I was off by a week and I realize that summer vacation was probably during that time. Now, the doctors report is ready, the file with the insurance is closed, I am unemployed but thankfully on EI and I am so tired of fighting for par today. Oh, so tired. 

I hope the doctor did spent a lot of time with my file as claimed by the reception because ever time that I have seen her, I have requested to view my file. Maybe, just maybe she will finally let me see my file; she even questioned why I want to see my file. For those who don’t know, I have one good eye, one good ear, and a whole world of pain from musculoskeletal and nerve issues. Information is healing; the more I understand about my health, the better I adapt to life. I have learned a lot from the hospital records that I acquired from both the Moncton Hospital and the IWK while I await my doctors decision let me see my primary file with all my records from all my appointments that she hold in her custody. Understanding my childhood health records has helped me heal a lot and even has assisted in my return to living my my life well through good humour.

I do not know where to turn. I know that I should be seen by specialists. All of the doctors and specialists that I have had have left the region over the years and what referrals I can get require annual renewals that require a whole other level of appointment-making skill. The only reason I have the diagnosis I have is because I went in with a two sided bullet list of symptoms and was sent to a specialist ten years ago. I hold on to what little hope I have that I can access proper care, or at least surveillance, in this broken system of ours.

I do not know really what to expect with saying all of this here, but I guess that is also why I am posting here. Support, encouragement, active legal or social actions… I appreciate any and all kind words. And to anyone experiencing similar situations: you are not alone. 

The Economics of Disability

A few months ago, I got into an argument with my brother over my financial situation. He could not figure out why medical expenses are so high for me and why my medical debts have accumulated as they have. After much thought, I realize not many people would really understand the economics of living with disability. In reality, although people with disabilities are expected to make lower than average incomes, they require supports that cost money beyond what the average person experiences. Now, I will list my impairments for newcomers and as a refresher: prosthetic right eye, moderate-severe hearing loss, migraines, scoliosis (a mild s-curve to my spine), depression survivor, fibromyalgia, and complex post-traumatic stress disorder. There are no cures for any of these - only quality of life treatments. I will break down one by one. Take a look at the table below and ask yourself, "how would I be able to afford this?".

In another post, I will explain how I have learned to off-set these costs through simple strategies in times when I can only barely afford the minimum amount.

Item	Frequency	Cost	Months	Monthly Basis	Average Coverage
Prosthetic Right Eye
Eye Care Solution Kit	Monthly	$10.00	1	$10.00	None
Eye Drops	Monthly	$25.00	1	$25.00	None
Prosthetic	Every 8-10 years	$2100.00	96	$21.88	1st one only at 80%
Prosthetic cleanings	Every 6 months	$70.00	6	$11.67	Sometimes 80%
Moderate-Severe Hearing Loss
Hearing Device	Every 5 years	$4000.00	60	$66.67	$500 every two years
Batteries	Every two moths	$20.00	2	$10.00	None
Accessories	Every 5 years	$30.00	60	$0.50	None
Migraines
Magnesium	Every 3 weeks	$30.00	0.8	$37.50	None
Advil	Monthly	$20.00	1	$20.00	None
Gravel Ginger	Every 3 weeks	$12.00	0.8	$15.00	None
Specialized Glasses	Every two years	$500.00	24	$20.83	Disability Credit
Scoliosis
Physiotherapy	Every 6 weeks	$120.00	1.5	$80.00	80% up to $500
Chiropractor	Every 3 weeks	$60.00	0.8	$75.00	80% up to $500
Depression Survivor
Counselling	Every 2 months	$130.00	2	$65.00	80% up to $500
Fibromyalgia
Naturopathic therapies	Monthly	$160.00	1	$160.00	80% up to $500
Massage Therapy	Every 3 weeks	$100.00	0.8	$125.00	80% up to $500
Complex Post-Traumatic Stress Disorder
Yoga	Weekly	$15.00	0.25	$60.00	None
Chronic Pain
Medical Marijuana (MMJ)	Daily	$10.00	0.03	$333.33	Disability Credit
			Full Coverage	$1137.38
			Minimums	$141.04
			Plus MMJ	$474.38

By the way, "Disability Credit" means there is no coverage but I can claim it on my taxes.

Canadian Disability Statistics and Me

The second phase of my doctoral studies research was related to people with disabilities and skills. Phase one was on language for specific purposes. When I went into phase two of my PhD work, I started reading statistics I could hardly believe about people with disabilities. Here, I present some of them from my own point of view. 

According to Statistics Canada, in 2012, there were more women than men reporting disability, women with disabilities are more like to be alone and even single parents than their male counterparts, and pain related disabilities are the highest for both genders. I learned that I am a member of the group of women with disabilities who have been single parents (11%) and to have lived alone (24.6%). And by the way, according to one of my classmates from my doctoral seminar course women, single parents in vulnerable sectors are most likely to wind up in abusive relationships. Talk about scary. Even scarier, I have fallen victim.  

There were also some fears that I always had confirmed. Like, I worried that being a woman with disabilities would be hard for a partner to handle. Turns out, men with disabilities were more likely to be married while women tend to be alone (14.5% of women versus 8.9% of men). Only 5.8% of women with disabilities even have a child living with them versus the 16.1% of women without disabilities who have children living with them. 

Of course, common sense, as the severity of the disability increases, as does the cost. For myself, that includes hearing aids and a prosthetic eye. I am also one of the 86% of women who use prescription medications at least once a week – mine is medical marijuana. This is never covered under any benefit plan anyway, so this is out of pocket regardless. 

Education is where I found some hope through government programs and being told wild tales of a beautiful life. Women with disabilities were half as likely to have obtained a bachelor’s degree than those without. This is where I am most fortunate to have been accepted to a couple of programs, two with some financial assistance. That was thanks to the opportunity to attend as many workshops as possible I am part of the cohort of women with disabilities who enjoy the educational experience. I did too! Unfortunately, the academic faculty experience is not nearly as set up for people with disabilities as the academic education side of the institution. 

Over half of those with disabilities required more time to complete their studies. I was fortunate with having attended many skills workshops to adapt methods to keep up with my cohort and then some. I also needed to work to pay bills. I always preferred to work over go into further debt. In my PhD years, it will likely be a part of the half that took longer to achieve present level of education. And… I did also feel like the 36% who felt like people avoided them or felt left out of school things. Thankfully, bullying in academia is fairly well dealt with, so of the ~25% who experienced bullying, it was not in my direct experience as a student. As a faculty member, that was another story.  

Here is where life as a person with disabilities, who, if they managed to achieve a certain level of education, becomes a missing puzzle piece: in the labour force. Statistics Canada sated in their report that the severity of disability often increases the difficulty of making certain kinds of work unsuitable and require to limit the number of hours they work or may require other workplace accommodations. In general, only ~62% of people with disabilities, ages 25 to 54 participate in the workforce. They are also often expected to end their working life at 55 or even 57 if you look at the government program eligibility criteria. Of course, women experience higher rates of unemployment to men (13.4% to 9.5%). They are more likely to work part time, as women tend to in general. 

When you are working, you are involved in more institutions than the government, which can often feel isolating. Indeed, near half of those with disabilities perceived labour force discrimination in that they felt disadvantaged due to their condition or felt that they were perceived to be considered disadvantaged by the employer. 

Surprisingly, given all the barriers mentioned above, nearly 28% of women with disabilities reported wages or salaries, at only a few points less than men. Women were less likely to be self-employed though (7.7% and 12.5%).  The rest reported assistance of sorts in 2012. Unsurprisingly, however is that women with disabilities have a lower average income compared to all three other cohorts (women without disabilities and men with or without disabilities). In Atlantic Canada, where I live, Women with disabilities reported on average 30,290$ personal income, versus women without at 33,930$. Imagine! I achieved a position of making up to 84,000$ a year at the time of my departure. In Canada, the average increases as a household, but dives deeply if the women with disabilities lives alone.  

Even though I face disabilities due to my impairments and chronic pain, my objective is to always be a functional member of society. I have worked so damn hard to craft and thrive only to have been pushed back by visible and invisible barriers. Statistics Canada proved to me the barriers are real just as much as they are perceived.  

https://www150.statcan.gc.ca/n1/pub/89-503-x/2015001/article/14695-eng.htm