Below the Line –Transcript of Louise’s Poverty Story for CFRC Radio
Friday, October 15, 2010
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Hello my name is Louise and I’m here to share my poverty story. I'm doing this as part of the Queen’s University Symposium on Poverty that is being held in Kingston Ontario from October 14-16, 2010. When the opportunity to produce this radio show came up, I was thrilled. But then I thought, ooh. How do I do this in a way that will educate, keep the audience interested, and not sound too negative? Well, by asking myself this question, I realized that I had my work cut out for me. I rose to the challenge.
I have a mix of stories to share and it is my hope that, by sharing them, it will educate the listening audience in such a way that they will think differently about a person who is in poverty. Many of these stories will illustrate that people who are in poverty are caught in a trap. They are caught in a web of social services programs that don’t always work together, or they lack the skills, education, and background, that are necessary for an employer to decide if a person is eligible to be hired for a job.
If you add a disability to the mix, either visible or invisible, then the extent of poverty can be much greater because the ability to get hired, so one can break free of the poverty trap, will be greatly diminished.
As a person who has a disability, I am going to focus on this aspect of the poverty story because it is the one I know about the most.
Let me start out by explaining why I am in poverty. I was not born into it. I was born into a family where both parents were professionals. They earned a decent income and they were able to give us lots of opportunities as children. We went camping. We had a summer cottage and were taught the basic life-skills that are so necessary for us to function well in society and later on. My parents encouraged us to be the best we could be and, because nobody would do anything for us, we had to learn. It was their goal to give us the guidance to figure out how to do things and they would help us only if we got stuck and couldn’t solve the problem. It was an environment that was conducive to learning.
Despite being born into this land of opportunity, I was an insecure kid. I didn’t fit in well at school and I was bullied unmercifully. I learned to hate and avoid school because I was so afraid of the other kids. At the age of 10, I became so depressed that I was prescribed the anti-depressant, Sinequan. The doctor also recommended that my parents send me to another school. For grade 7 & 8, I went to boarding school in Toronto. I hated it at first but then I loved it and it wasn’t long before I was doing really well. I developed self-confidence, I was involved in many school activities, and I finally started to get some really really good marks. I felt great. However, at the end of grade 9 my family decided, regardless of this, that I better to go back to public high school in Peterborough because it was expensive to send me to boarding school. The sad part was, when I returned to high school the kids started to resume their bullying. They’d found out I had been to boarding school, so I was now dubbed as a snob, and was shunned.
Being isolated at school, it didn’t take long before I sunk back into a depression and I really missed my friends from school in Toronto. In fact I became so depressed that by January, I had to be admitted to the psychiatric ward of the hospital for the first time. It was there that I was medicated and I had to stay there for 2 months. This made matters worse with my peers at school because, when I returned, the kids found out I’d been there, and they further stigmatized me not only being a snob, but as also being crazy. Now everyone started to avoid me. When I tried out for sports or tried to join a regular club, I wasn’t accepted. Life became so unbearably lonely, that it was hard to keep out of the depression. The only bright spot I could find was when I joined the school choir. I was in a class that was held at night because it was designed to serve all the high schools in Peterborough and it was there I started to make some friends. We had a common bond in song and that was a good thing. It helped to ease the loneliness a bit, but it was still hard to go to my own school and face the kids.
Because of the medication that I was being given for a depression, my marks weren’t great and it started to look like I was going to fail a few courses. I went to the guidance counselor and, on his advice; I dropped from a 5-year level course, to a 4-year level. This meant I would no longer go to grade 13 and ultimately to University. This is unfortunate because my parents had been investing in The Registered Educational Fund for most of my life and, back then, it would only pay for University. Dropping to a 4-year level closed a lot of doors.
I somehow managed to graduate from grade 12, despite having three more admissions for 2-months each time, but I did it because the school board was able to supply me with a tutor who could help me to keep up. I wasn’t so lucky when I applied for, and was accepted to, Community College. I had no idea what to take because I was interested in tinkering with things rather than working with some of the traditional women’s jobs. However, for a woman in the 70’s to follow a career where I would be in a classroom full of men was not a good idea with my mental health issues. For this reason I decided to go into nursing. Well, that was a big mistake. It was not part of my personality and, within 8 weeks, I got depressed again. This time the doctor certified me to the hospital so I had no choice but to stay there. I was there for 3 months and, as a result I lost the funding that had paid for the course and, of course, I lost the course.
Shortly after I was discharged from hospital I had to go onto welfare because the course was now gone and I was having too many problems at home. My parents wanted me to buck up, cheer up, and stop feeling so sorry for myself, but I couldn’t do it. The stress of trying to meet their expectations was only making matters worse so the psychiatrist recommended I apply for welfare and move away from home. He said that was the only way I was going to be able to heal.
Well, I followed the psychiatrist’s advice having no idea what kind of trap I was walking myself into. I didn’t know how difficult it would be to later break away from the social services program and the poverty trap. If I had known then, what I know now, I would never have done it. I was an insecure and confused teenager and I who couldn’t figure out who was the best person to listen to; the professional or my parents. Unfortunately I chose the professional and I now realize that was a big mistake. But you can’t undo the past. The best you can do it share your story, and hope that others don’t make the same mistake.
When I went onto welfare I was 17 years old and, back then, it was mandatory for a person to apply for 3 jobs a day. You not only had to apply for the jobs, but you had to also get a signature from the employer to prove that you did it. I certainly wanted to get a job but it was very hard to go looking for work when you’re so medicated that your mouth is twisted slightly out of shape, you’re drooling, and you’re slurring your speech. You know full well you’re not making a good impression to the employer and it wasn’t a surprise that they weren’t calling me to give a job interview.
I spent many months of trying to meet my commitment with social services but when I never got one call for an interview, I got demoralized, started to self-doubt, and wonder what is wrong with me and I eventually got depressed.
This meant that, by the age of 20, I’d been in the hospital five times and I was taking up to about 20 – 25 pills a day. I had no work history, other than a few summer jobs, I had no post-secondary education, and I was rapidly losing the chance to ever get enough work history or background that would give the job references that are so necessary for one to even get an entry level job.
In 1980 I eventually heard of a government program called OCAP (Ontario Career Action Program) and I applied for it. With that program, you work for a regular employer for 4 months and the government will pay your wages. You are expected to show up for work every day and they are expected to write weekly evaluations on your job performance. I had excellent performance reports because I was a quick learner, I showed up for work every day and I volunteered to do everything. At the end of the 4 months I was hired but then I made a mistake. I had to get a wisdom tooth out and I decided to get it done on my lunch hour. Well I did this on the Thursday before Thanksgiving and unfortunately I ran into complications. Within hours I had developed a dry socket and the next day I had an infection, so I had to take the time off work. I was fired the following week.
This meant I had to go back onto welfare until I could find another job. I eventually found one at a Chinese Restaurant. It didn’t give me a lot of hours and it was an awful place to work, but at least it was a job and it was better than nothing. In fact this employer was pretty good because whenever I had to go in hospital he would keep my job for me to go back to when I got out. It was hard to stay hopeful though and I was having multiple hospital admissions. So, after about 3 years of this, I finally got so depressed that I gave up. I became suicidal and I started developing behavior problems; fighting out against the world and against the trap I was in.
In 1983, Peterborough could no longer manage me so I was transferred to Kingston Psychiatric Hospital. By this point I’d not been able to get a decent job, I was not integrated into society, I could barely afford to survive on the income I was earning at the Chinese Restaurant, and it seemed next to impossible to ward off the demons of depression.
At one point I remember even asking a social worker to share the results of the psychological testing, capacity assessment testing, and career interest testing with a potential employer because I thought that would help me to actually get the job. I knew the employer was not getting a good impression of me by a visual look alone. However, the social worker didn’t agree that she could share this information with the employer and she wouldn’t.
When I got to Kingston Psychiatric Hospital I no longer had an interest in life, I didn’t want to be alive and I honestly had no idea how to break out of the trap. For the next 2 years I continued to deteriorate in my behavior and it was no surprise when they decided they were going to send me to St. Thomas Psychiatric Hospital. I was there for 10 months.
Thankfully when I did get out I was past that stage of rebellion and I moved back home with my parents who were now in Cobourg. I lived there for 10 months. When I was there I went back to high school as an adult student to get used to studying again and then my parents agreed to fund me taking a course at St. Lawrence College in Kingston. I took 2 years of business administration with a major in accounting before I, ended up getting depressed and had to back in the hospital again. I lost the course. However, I had gotten lot further than I had ever got before. Being aware of that progress helped me to develop a high level of energy and this was helping me to keep moving forward.
Unfortunately, the psychiatrist became concerned about this new level of energy because he’d never seen it before. I was going at a pretty high pace and I was not sleeping very many hours, so he was concerned and he diagnosed me as being manic. He gave me new medication to slow me down.
I don't remember the names of the medication I had been on over the years, but I know the names of at least 28 of them. In my opinion, I was on too much. The loss of hope and the bad behavior that I had started to exhibit did not help me one bit.
There really is no one you can blame or point fingers at, but I do see this as a trend goes on throughout the system. It is a systemic issue that needs to be changed. It is a trend that has led people into needless poverty and often to our prisons or out on the streets and this is so unfortunate.
When I got out of Kingston Psychiatric Hospital I moved into The Friendship Homes, which is a supportive living environment for people who have had a mental illness.
In 1995 I got my first part-time job at a convenience store and my life started to take a turn for the better. However, at the same time I started to have problems walking and I was falling for reasons I could not explain. My legs weren’t going where I wanted them to go and I had a lot of pain so, when I got home from work, I did everything in my power to conserve my energy so I could go back to work the next day. There were times I literally had to crawl up the stairs to get to my room so, the staff started to become concerned about my safety. I had been trying to get an answer about the leg problem from the doctor for about a year at this point, but I was getting nowhere. The family doctor would say it was not physical and she would send me to the psychiatrist and the psychiatrist would say it’s not mental and he would send me to the GP.
It wasn’t until a worker from Friendship Homes decided that she would come to an appointment with me and tell them that we were not leaving until they’d come up with an answer, that the two doctors talked to each other and it was decided that I was to be admitted to the psychiatric hospital. They never really did find out the problem at that point but I ended up in a wheelchair. It wasn’t until several years later that I finally found out what the real problem was. All that medication that I had been taking over the years and that was twisting my mouth out of shape and causing me to drool had caused permanent nerve damage with my legs.
It sounds pretty devastating to say that medication had caused the problem and put me in a wheelchair. Now that I’m over the shock, I have to say it did open the door to new opportunities. The first thing it did was force me to move out of the Friendship Homes because their houses where not wheelchair accessible. I had to move into a full-priced apartment that cost $604 per month and I was only getting $930 a month from the disability pension. In addition to this, I had to pay $100 a month to buy the wheelchair because my family was not allowed to help me at that point. The program that was the precursor to the ODSP program was the Family Benefits Allowance and it never used to allow the family to financially support you.
Because the rent was so high I decided I had no choice but to get a job so I could pay for the rent so I joined the Job Club. When the job club ended every single person said to me that when they saw my drive and energy, and they heard me speak about my methods of how I was looking for work, they were motivated to do the same. The irony is that in the end, they all got jobs, and I never got one call for an interview. I can only assume that it is because of my lack of work history, viable work references, and possibly the wheelchair, but I don’t know this for sure.
Another thing that happened that I call a miracle because it helped lead me on the road to recovery was, believe it or not, developing sleep apnea in the late 1990’s. I had been falling asleep without warning, and nobody knew why. I finally went to the sleep specialist and that’s when I discovered I had severe sleep apnea. For a year he tried to treat it with the CPAP machine and even an oral appliance. But it didn’t work. Try as he might, he could not bring the apnea down to a controllable level. He happened to make a comment one day about how the sedation of the medications would be what was causing the problem and thankfully that sent alarm bells off in my head. Enough so, that I went back to the psychiatrist and said I wanted to reduce some of the medication, but he would not agree. I then went to my family doctor and I asked her the same thing. Thankfully she took over the prescribing and was able to taper me off of them all. By getting off the pills off I had another little miracle happen that I never would have expected.
I’d been on them for 32 years and was frequently getting depressed, often giving up, and having far too many admissions to hospital. But when I was off the medications I discovered the symptoms of the mental illness vanished. So did the sleep apnea (almost) and the stomach reflux. I was finally on the road to recovery. My first goal was to go back to school, and then to look for work.
I found a College fund to apply to and I took a course in web design. Unfortunately I discovered upon graduation that I cannot be self-employed and work from home when I live in subsidized housing. I would have to find another location where I could work.
Undaunted I went to ODSP, applied for Employment Supports and, with their help, I looked for a job. The first thing the employment counselor did was have me go and do some psychological testing and capacity assessment testing. They wanted to make sure they would find a suitable career path that I can do from a wheelchair.
The results that came back, were nothing sort of miraculous. Previous testing had shown that I was functioning at a rather low level, but now that I was off the medication, the tests showed the complete opposite. Psychologically, there was no evidence of a borderline personality disorder or a bipolar disorder. I had a healthy adaptive approach to coping with pain and, intellectually, I scored average or slightly above average in all the categories that I was tested in. I was so thrilled that I shared those results with everyone. Little did I know that this would result in the services being cut off from the Mental Health Care Team? They had been helping me find services, overcome barriers to the wheelchair in the community, and help me deal with the frustration of its limits. By using their service to stay grounded it kept me from getting depressed again. However, in order to receive their service you had to have a diagnosed mental illness and I had just ruled them out.
Despite losing the worker, I was still determined that I was going to get a job. I went back to the employments support counselor and I asked for her help to resume looking for a job. They set me into a 4-month placement at a place where I could work in web design, but at the end of it I didn’t have enough skills for them to justify hiring me. They needed me to learn another web design skill. I rose to the challenge. I went to the employer that I had been working under and I asked her if she would be willing to be my mentor if I were to teach myself the new skill. I thought I could extend the length of my placement, work under her mentorship, and if I did a good job, that they would consider hiring me to actually work full-time. She didn’t say no to the idea so I made an appointment with employment supports to see if this could be done. When I got up there I discovered unfortunately, the government had restructured the program and because I would not be employed by the newly appointed deadline, they would have to close my file and I would have to wait a year before I could reopen it again. I couldn’t believe it. But what do you do? That’s how the government works.
The good news is, being emotionally stronger; they were not going to knock me down. I was determined that I was going to get a job and break out of poverty, no matter what. I went to another employment agency and I asked for their help. The employment counselor wasn’t sure what to suggest I work at given my level of skill so he made a comment, why don’t you just work at one of the 2 Call Centres in town? Well, I hadn’t applied to them because they were open 24/7 and I had been told that they do not accommodate shifts for anybody, so I was worried that I wouldn’t be able to get there when I use public transit and it doesn’t run at night. However, his statement was a challenge and I went up and applied. In both cases I was accepted for the job. I took the job at the one that I liked the best and I was there for 18 months. I loved it.
For the first time ever I was actually able to get off ODSP. But it wasn’t easy. The ODSP program has a lot of incentives built into it so this meant that even though I was working full time and getting double the income I was on ODSP they couldn’t migrate me off in a way that would allow me to qualify for the rapid reinstatement program. I had to earn another $18. I signed up for every over-time shift I could, earned the $18, and that was the end of ODSP. It was exhilarating. I was so happy to be off it. The thing is I got another shock. I discovered the Social housing program has 2 different formulae; one for those receiving social assistance, and one for those who are not. Well, as soon as I left ODSP, my rent increased by 680%. It went from $78 per month plus hydro, to $533 plus hydro. I also had to pay more for my Access Buses and other cost were getting to be very expensive. I was not getting further ahead. I wasn’t worried about this though. I was used to not earning a lot of extra money, and I was thrilled to be working. The only thing that got difficult was when they closed No Frills grocery store and S & R Department Store in the downtown. All of a sudden there wasn’t enough hours in the day to work and get my daily essential tasks of living done. I managed but I was doing it by cutting down on my sleep and pushing myself harder and faster than I had before.
My high level of energy enabled me to do it, but then we had an Access Bus strike. Because I have a severe scent-allergy I could not take conventional transit. The only way I could get to work was by leaving home at 5:45 in the morning and traveling 11 kms. to work by power wheelchair. I was able to charge the chair when I was there, and then, if I was lucky, I could take a bus home.
With a grocery store and a department store no longer being downtown I had to do without a lot of things. There are no delivery services that you can call for someone to pick up items for you, nor do I have the help of family and friends. I managed to sustain the pace throughout the whole Access Bus strike, but then tragedy hit. The employer changed the time of my shift to one that would not leave me enough time before or after work to take transit to stores while they were still open. Emotionally, I broke down. I couldn’t stop crying because, no matter how hard I tried, I could not overcome the physical barriers I was suddenly having to face.
The stress of trying to sort it out, coupled with only 4 hours of sleep at night to accommodate for the Access Bus strike finally got the better of me. I couldn’t stop crying and this doesn’t work well in a Call Center. So I went to my doctor and was advised to take time off work. He diagnosed me with an Adjustment Disorder. Well, Shepell FGI, an agent for my employer rejected his medical and I was given 30 days to appeal. It too was rejected and I was now facing job abandonment.
Throughout the summer I was so frustrated, not only with the problems with getting to work, but also from the lack of support from my relatively new doctor. I asked him why he would label me as mentally ill instead of naturally stressed out with all the things I was trying to overcome so I could continue to work, and he got up, walked out of the room and told me to find another doctor. That almost finished me, but I am too determined to quit.
I went out to the woods at Lemoine’s Point and I traveled through the woods very very slowly. That’s when I heard this.
(Sounds of birds and crickets were cut in)
When you listen to these sounds, it calms your whole body down. My heart rate slowed. It was restoring my soul. Out there I could do a lot of thinking, write a lot of letters, and try to take steps necessary to salvage my job. In the end, I lost the battle. The appeal medical had been rejected, the doctor had walked away, I was facing job abandonment, I was devastated, and I felt I had no choice but to quit. I was too tearful to return to work right away.
When I went back to get ODSP, I discovered, much to my horror that because I had been an optimist and applied for the E.I. Sick Benefits with the hopes that I could return to work, I could not get back on ODSP through rapid reinstatement right away. This is because it is mandatory to exhaust all other sources of income before you return.
Employment insurance gave me an income but it was not enough to cover my rent and all my medical expenses. Now I had to wait 4 months in order to get that. It was beyond belief.
I didn’t even have bus fare to go to Martha’s Table or the Food Bank to get food.
Finally after 4 months I had one more return to the psychiatric ward. I had a situational depression that no medication could treat. I got to stay there for 9 days, eat some healthy food, and restore myself.
I am now back on ODSP but the hardest thing I have ever done is try to do nothing. I apply for jobs and volunteer jobs on a regular basis but I don’t always get called because I cannot do the equal tasks to everyone else.
If you were to ask me to sum up, in a nutshell, why I am in the poverty trap, my answer would be I did not gain enough self-confidence and strength as a teenager to overcome the bullying at school, the many depressions, and I did not get the post-secondary education at a normally young age. The longer you go without getting that good start in life, the harder it will be to break free of the poverty trap.
It is wrong for the government to be cutting funding for things like the special diet allowance. We need to speak up collectively to ask for more income for people who are disabled and, through no fault of their own, cannot get a job.
Until this happens, the poverty is going to continue and, much as I hate to say it, I’m going to be thankful for those hard-earned tax dollars that you are paying in order to keep me alive. If you are willing to take the risk and hire me contact CFRC at 613-533-2121 and they will tell you how you can find me.
I want to thank you so much for listening.
I have blown a lot of minds yesterday at the Queen's University Symposium on Poverty that is going on from October 14 - 16th in conjunction with the production of this radio show.
It has been top-notch fantastic. I actually had someone reach out and hug me yesterday - actually touch me and make me feel like a welcome, and very valuable human being. It put me into tears of joy.
By sharing this story and that about the effects of trying to survive under these very broken and flawed social services policies. One guy, a nurse by trade, spoke about his experience working at Street Health in London and in groups that are trying to eradicate homelessness. He spoke of the behaviours observed and how policies were being set to try to keep people in line, and then I spoke about how I responded on the receiving end of those policies.
For example, he mentioned how they used to give away socks and bus tickets and how some people could never seem to get enough - they were too needy.
And I said, I am one of those needy people. That's because I don't want your socks or your bus tickets to be just given to me. I want to be accepted for who I am, treated like a valuable person who can contribute in some small way to society - either by working, volunteering, providing input or feedback and then working TOGETHER to help solve the problem - not have the input taken and then the person (who is getting paid) take my input and adopt it into a thesis or theory that will carry them on as a valuable contributing citizen in this world, etc.
I even shared how, when they caged me in the psych system and had me locked up in seclusion, how I would fight out. I couldn't break free of the stigmatization and overmedicating being done by the psychiatrists so I changed my mindset to one of, I'm going to give you a run for your money. If you're going to keep me locked up, I'm going to fight out and make you work hard to keep me under control.
I was identical to that Ashley Smith teen who was incarcerated in a youth detention facility for throwing an apple at a cop, and then who fought out about being caged for such a minor offence. She spiralled out of control, was eventually transferred to 19 different prisons, and finally committed suicide in Kitchener.
The only difference between her and me is she was in prison, I was in the psych, she finally succeeded, and I made multiple failed attempts to do the same thing. Thankfully the drugs caused the walking problem and sleep apnea so that the psychiatrists finally turfed me out on my ear. When they realized they caused permanent damage to my legs, they washed their hands of me, my GP got me off the medications, the mental illness vanished, and I have never looked back.
Please read my other Blogs:
Transit: http://wheelchairdemon-transit.blogspot.com
Health: http://wheelchairdemon-health.blogspot.com
I have a mix of stories to share and it is my hope that, by sharing them, it will educate the listening audience in such a way that they will think differently about a person who is in poverty. Many of these stories will illustrate that people who are in poverty are caught in a trap. They are caught in a web of social services programs that don’t always work together, or they lack the skills, education, and background, that are necessary for an employer to decide if a person is eligible to be hired for a job.
If you add a disability to the mix, either visible or invisible, then the extent of poverty can be much greater because the ability to get hired, so one can break free of the poverty trap, will be greatly diminished.
As a person who has a disability, I am going to focus on this aspect of the poverty story because it is the one I know about the most.
Let me start out by explaining why I am in poverty. I was not born into it. I was born into a family where both parents were professionals. They earned a decent income and they were able to give us lots of opportunities as children. We went camping. We had a summer cottage and were taught the basic life-skills that are so necessary for us to function well in society and later on. My parents encouraged us to be the best we could be and, because nobody would do anything for us, we had to learn. It was their goal to give us the guidance to figure out how to do things and they would help us only if we got stuck and couldn’t solve the problem. It was an environment that was conducive to learning.
Despite being born into this land of opportunity, I was an insecure kid. I didn’t fit in well at school and I was bullied unmercifully. I learned to hate and avoid school because I was so afraid of the other kids. At the age of 10, I became so depressed that I was prescribed the anti-depressant, Sinequan. The doctor also recommended that my parents send me to another school. For grade 7 & 8, I went to boarding school in Toronto. I hated it at first but then I loved it and it wasn’t long before I was doing really well. I developed self-confidence, I was involved in many school activities, and I finally started to get some really really good marks. I felt great. However, at the end of grade 9 my family decided, regardless of this, that I better to go back to public high school in Peterborough because it was expensive to send me to boarding school. The sad part was, when I returned to high school the kids started to resume their bullying. They’d found out I had been to boarding school, so I was now dubbed as a snob, and was shunned.
Being isolated at school, it didn’t take long before I sunk back into a depression and I really missed my friends from school in Toronto. In fact I became so depressed that by January, I had to be admitted to the psychiatric ward of the hospital for the first time. It was there that I was medicated and I had to stay there for 2 months. This made matters worse with my peers at school because, when I returned, the kids found out I’d been there, and they further stigmatized me not only being a snob, but as also being crazy. Now everyone started to avoid me. When I tried out for sports or tried to join a regular club, I wasn’t accepted. Life became so unbearably lonely, that it was hard to keep out of the depression. The only bright spot I could find was when I joined the school choir. I was in a class that was held at night because it was designed to serve all the high schools in Peterborough and it was there I started to make some friends. We had a common bond in song and that was a good thing. It helped to ease the loneliness a bit, but it was still hard to go to my own school and face the kids.
Because of the medication that I was being given for a depression, my marks weren’t great and it started to look like I was going to fail a few courses. I went to the guidance counselor and, on his advice; I dropped from a 5-year level course, to a 4-year level. This meant I would no longer go to grade 13 and ultimately to University. This is unfortunate because my parents had been investing in The Registered Educational Fund for most of my life and, back then, it would only pay for University. Dropping to a 4-year level closed a lot of doors.
I somehow managed to graduate from grade 12, despite having three more admissions for 2-months each time, but I did it because the school board was able to supply me with a tutor who could help me to keep up. I wasn’t so lucky when I applied for, and was accepted to, Community College. I had no idea what to take because I was interested in tinkering with things rather than working with some of the traditional women’s jobs. However, for a woman in the 70’s to follow a career where I would be in a classroom full of men was not a good idea with my mental health issues. For this reason I decided to go into nursing. Well, that was a big mistake. It was not part of my personality and, within 8 weeks, I got depressed again. This time the doctor certified me to the hospital so I had no choice but to stay there. I was there for 3 months and, as a result I lost the funding that had paid for the course and, of course, I lost the course.
Shortly after I was discharged from hospital I had to go onto welfare because the course was now gone and I was having too many problems at home. My parents wanted me to buck up, cheer up, and stop feeling so sorry for myself, but I couldn’t do it. The stress of trying to meet their expectations was only making matters worse so the psychiatrist recommended I apply for welfare and move away from home. He said that was the only way I was going to be able to heal.
Well, I followed the psychiatrist’s advice having no idea what kind of trap I was walking myself into. I didn’t know how difficult it would be to later break away from the social services program and the poverty trap. If I had known then, what I know now, I would never have done it. I was an insecure and confused teenager and I who couldn’t figure out who was the best person to listen to; the professional or my parents. Unfortunately I chose the professional and I now realize that was a big mistake. But you can’t undo the past. The best you can do it share your story, and hope that others don’t make the same mistake.
When I went onto welfare I was 17 years old and, back then, it was mandatory for a person to apply for 3 jobs a day. You not only had to apply for the jobs, but you had to also get a signature from the employer to prove that you did it. I certainly wanted to get a job but it was very hard to go looking for work when you’re so medicated that your mouth is twisted slightly out of shape, you’re drooling, and you’re slurring your speech. You know full well you’re not making a good impression to the employer and it wasn’t a surprise that they weren’t calling me to give a job interview.
I spent many months of trying to meet my commitment with social services but when I never got one call for an interview, I got demoralized, started to self-doubt, and wonder what is wrong with me and I eventually got depressed.
This meant that, by the age of 20, I’d been in the hospital five times and I was taking up to about 20 – 25 pills a day. I had no work history, other than a few summer jobs, I had no post-secondary education, and I was rapidly losing the chance to ever get enough work history or background that would give the job references that are so necessary for one to even get an entry level job.
In 1980 I eventually heard of a government program called OCAP (Ontario Career Action Program) and I applied for it. With that program, you work for a regular employer for 4 months and the government will pay your wages. You are expected to show up for work every day and they are expected to write weekly evaluations on your job performance. I had excellent performance reports because I was a quick learner, I showed up for work every day and I volunteered to do everything. At the end of the 4 months I was hired but then I made a mistake. I had to get a wisdom tooth out and I decided to get it done on my lunch hour. Well I did this on the Thursday before Thanksgiving and unfortunately I ran into complications. Within hours I had developed a dry socket and the next day I had an infection, so I had to take the time off work. I was fired the following week.
This meant I had to go back onto welfare until I could find another job. I eventually found one at a Chinese Restaurant. It didn’t give me a lot of hours and it was an awful place to work, but at least it was a job and it was better than nothing. In fact this employer was pretty good because whenever I had to go in hospital he would keep my job for me to go back to when I got out. It was hard to stay hopeful though and I was having multiple hospital admissions. So, after about 3 years of this, I finally got so depressed that I gave up. I became suicidal and I started developing behavior problems; fighting out against the world and against the trap I was in.
In 1983, Peterborough could no longer manage me so I was transferred to Kingston Psychiatric Hospital. By this point I’d not been able to get a decent job, I was not integrated into society, I could barely afford to survive on the income I was earning at the Chinese Restaurant, and it seemed next to impossible to ward off the demons of depression.
At one point I remember even asking a social worker to share the results of the psychological testing, capacity assessment testing, and career interest testing with a potential employer because I thought that would help me to actually get the job. I knew the employer was not getting a good impression of me by a visual look alone. However, the social worker didn’t agree that she could share this information with the employer and she wouldn’t.
When I got to Kingston Psychiatric Hospital I no longer had an interest in life, I didn’t want to be alive and I honestly had no idea how to break out of the trap. For the next 2 years I continued to deteriorate in my behavior and it was no surprise when they decided they were going to send me to St. Thomas Psychiatric Hospital. I was there for 10 months.
Thankfully when I did get out I was past that stage of rebellion and I moved back home with my parents who were now in Cobourg. I lived there for 10 months. When I was there I went back to high school as an adult student to get used to studying again and then my parents agreed to fund me taking a course at St. Lawrence College in Kingston. I took 2 years of business administration with a major in accounting before I, ended up getting depressed and had to back in the hospital again. I lost the course. However, I had gotten lot further than I had ever got before. Being aware of that progress helped me to develop a high level of energy and this was helping me to keep moving forward.
Unfortunately, the psychiatrist became concerned about this new level of energy because he’d never seen it before. I was going at a pretty high pace and I was not sleeping very many hours, so he was concerned and he diagnosed me as being manic. He gave me new medication to slow me down.
I don't remember the names of the medication I had been on over the years, but I know the names of at least 28 of them. In my opinion, I was on too much. The loss of hope and the bad behavior that I had started to exhibit did not help me one bit.
There really is no one you can blame or point fingers at, but I do see this as a trend goes on throughout the system. It is a systemic issue that needs to be changed. It is a trend that has led people into needless poverty and often to our prisons or out on the streets and this is so unfortunate.
When I got out of Kingston Psychiatric Hospital I moved into The Friendship Homes, which is a supportive living environment for people who have had a mental illness.
In 1995 I got my first part-time job at a convenience store and my life started to take a turn for the better. However, at the same time I started to have problems walking and I was falling for reasons I could not explain. My legs weren’t going where I wanted them to go and I had a lot of pain so, when I got home from work, I did everything in my power to conserve my energy so I could go back to work the next day. There were times I literally had to crawl up the stairs to get to my room so, the staff started to become concerned about my safety. I had been trying to get an answer about the leg problem from the doctor for about a year at this point, but I was getting nowhere. The family doctor would say it was not physical and she would send me to the psychiatrist and the psychiatrist would say it’s not mental and he would send me to the GP.
It wasn’t until a worker from Friendship Homes decided that she would come to an appointment with me and tell them that we were not leaving until they’d come up with an answer, that the two doctors talked to each other and it was decided that I was to be admitted to the psychiatric hospital. They never really did find out the problem at that point but I ended up in a wheelchair. It wasn’t until several years later that I finally found out what the real problem was. All that medication that I had been taking over the years and that was twisting my mouth out of shape and causing me to drool had caused permanent nerve damage with my legs.
It sounds pretty devastating to say that medication had caused the problem and put me in a wheelchair. Now that I’m over the shock, I have to say it did open the door to new opportunities. The first thing it did was force me to move out of the Friendship Homes because their houses where not wheelchair accessible. I had to move into a full-priced apartment that cost $604 per month and I was only getting $930 a month from the disability pension. In addition to this, I had to pay $100 a month to buy the wheelchair because my family was not allowed to help me at that point. The program that was the precursor to the ODSP program was the Family Benefits Allowance and it never used to allow the family to financially support you.
Because the rent was so high I decided I had no choice but to get a job so I could pay for the rent so I joined the Job Club. When the job club ended every single person said to me that when they saw my drive and energy, and they heard me speak about my methods of how I was looking for work, they were motivated to do the same. The irony is that in the end, they all got jobs, and I never got one call for an interview. I can only assume that it is because of my lack of work history, viable work references, and possibly the wheelchair, but I don’t know this for sure.
Another thing that happened that I call a miracle because it helped lead me on the road to recovery was, believe it or not, developing sleep apnea in the late 1990’s. I had been falling asleep without warning, and nobody knew why. I finally went to the sleep specialist and that’s when I discovered I had severe sleep apnea. For a year he tried to treat it with the CPAP machine and even an oral appliance. But it didn’t work. Try as he might, he could not bring the apnea down to a controllable level. He happened to make a comment one day about how the sedation of the medications would be what was causing the problem and thankfully that sent alarm bells off in my head. Enough so, that I went back to the psychiatrist and said I wanted to reduce some of the medication, but he would not agree. I then went to my family doctor and I asked her the same thing. Thankfully she took over the prescribing and was able to taper me off of them all. By getting off the pills off I had another little miracle happen that I never would have expected.
I’d been on them for 32 years and was frequently getting depressed, often giving up, and having far too many admissions to hospital. But when I was off the medications I discovered the symptoms of the mental illness vanished. So did the sleep apnea (almost) and the stomach reflux. I was finally on the road to recovery. My first goal was to go back to school, and then to look for work.
I found a College fund to apply to and I took a course in web design. Unfortunately I discovered upon graduation that I cannot be self-employed and work from home when I live in subsidized housing. I would have to find another location where I could work.
Undaunted I went to ODSP, applied for Employment Supports and, with their help, I looked for a job. The first thing the employment counselor did was have me go and do some psychological testing and capacity assessment testing. They wanted to make sure they would find a suitable career path that I can do from a wheelchair.
The results that came back, were nothing sort of miraculous. Previous testing had shown that I was functioning at a rather low level, but now that I was off the medication, the tests showed the complete opposite. Psychologically, there was no evidence of a borderline personality disorder or a bipolar disorder. I had a healthy adaptive approach to coping with pain and, intellectually, I scored average or slightly above average in all the categories that I was tested in. I was so thrilled that I shared those results with everyone. Little did I know that this would result in the services being cut off from the Mental Health Care Team? They had been helping me find services, overcome barriers to the wheelchair in the community, and help me deal with the frustration of its limits. By using their service to stay grounded it kept me from getting depressed again. However, in order to receive their service you had to have a diagnosed mental illness and I had just ruled them out.
Despite losing the worker, I was still determined that I was going to get a job. I went back to the employments support counselor and I asked for her help to resume looking for a job. They set me into a 4-month placement at a place where I could work in web design, but at the end of it I didn’t have enough skills for them to justify hiring me. They needed me to learn another web design skill. I rose to the challenge. I went to the employer that I had been working under and I asked her if she would be willing to be my mentor if I were to teach myself the new skill. I thought I could extend the length of my placement, work under her mentorship, and if I did a good job, that they would consider hiring me to actually work full-time. She didn’t say no to the idea so I made an appointment with employment supports to see if this could be done. When I got up there I discovered unfortunately, the government had restructured the program and because I would not be employed by the newly appointed deadline, they would have to close my file and I would have to wait a year before I could reopen it again. I couldn’t believe it. But what do you do? That’s how the government works.
The good news is, being emotionally stronger; they were not going to knock me down. I was determined that I was going to get a job and break out of poverty, no matter what. I went to another employment agency and I asked for their help. The employment counselor wasn’t sure what to suggest I work at given my level of skill so he made a comment, why don’t you just work at one of the 2 Call Centres in town? Well, I hadn’t applied to them because they were open 24/7 and I had been told that they do not accommodate shifts for anybody, so I was worried that I wouldn’t be able to get there when I use public transit and it doesn’t run at night. However, his statement was a challenge and I went up and applied. In both cases I was accepted for the job. I took the job at the one that I liked the best and I was there for 18 months. I loved it.
For the first time ever I was actually able to get off ODSP. But it wasn’t easy. The ODSP program has a lot of incentives built into it so this meant that even though I was working full time and getting double the income I was on ODSP they couldn’t migrate me off in a way that would allow me to qualify for the rapid reinstatement program. I had to earn another $18. I signed up for every over-time shift I could, earned the $18, and that was the end of ODSP. It was exhilarating. I was so happy to be off it. The thing is I got another shock. I discovered the Social housing program has 2 different formulae; one for those receiving social assistance, and one for those who are not. Well, as soon as I left ODSP, my rent increased by 680%. It went from $78 per month plus hydro, to $533 plus hydro. I also had to pay more for my Access Buses and other cost were getting to be very expensive. I was not getting further ahead. I wasn’t worried about this though. I was used to not earning a lot of extra money, and I was thrilled to be working. The only thing that got difficult was when they closed No Frills grocery store and S & R Department Store in the downtown. All of a sudden there wasn’t enough hours in the day to work and get my daily essential tasks of living done. I managed but I was doing it by cutting down on my sleep and pushing myself harder and faster than I had before.
My high level of energy enabled me to do it, but then we had an Access Bus strike. Because I have a severe scent-allergy I could not take conventional transit. The only way I could get to work was by leaving home at 5:45 in the morning and traveling 11 kms. to work by power wheelchair. I was able to charge the chair when I was there, and then, if I was lucky, I could take a bus home.
With a grocery store and a department store no longer being downtown I had to do without a lot of things. There are no delivery services that you can call for someone to pick up items for you, nor do I have the help of family and friends. I managed to sustain the pace throughout the whole Access Bus strike, but then tragedy hit. The employer changed the time of my shift to one that would not leave me enough time before or after work to take transit to stores while they were still open. Emotionally, I broke down. I couldn’t stop crying because, no matter how hard I tried, I could not overcome the physical barriers I was suddenly having to face.
The stress of trying to sort it out, coupled with only 4 hours of sleep at night to accommodate for the Access Bus strike finally got the better of me. I couldn’t stop crying and this doesn’t work well in a Call Center. So I went to my doctor and was advised to take time off work. He diagnosed me with an Adjustment Disorder. Well, Shepell FGI, an agent for my employer rejected his medical and I was given 30 days to appeal. It too was rejected and I was now facing job abandonment.
Throughout the summer I was so frustrated, not only with the problems with getting to work, but also from the lack of support from my relatively new doctor. I asked him why he would label me as mentally ill instead of naturally stressed out with all the things I was trying to overcome so I could continue to work, and he got up, walked out of the room and told me to find another doctor. That almost finished me, but I am too determined to quit.
I went out to the woods at Lemoine’s Point and I traveled through the woods very very slowly. That’s when I heard this.
(Sounds of birds and crickets were cut in)
When you listen to these sounds, it calms your whole body down. My heart rate slowed. It was restoring my soul. Out there I could do a lot of thinking, write a lot of letters, and try to take steps necessary to salvage my job. In the end, I lost the battle. The appeal medical had been rejected, the doctor had walked away, I was facing job abandonment, I was devastated, and I felt I had no choice but to quit. I was too tearful to return to work right away.
When I went back to get ODSP, I discovered, much to my horror that because I had been an optimist and applied for the E.I. Sick Benefits with the hopes that I could return to work, I could not get back on ODSP through rapid reinstatement right away. This is because it is mandatory to exhaust all other sources of income before you return.
Employment insurance gave me an income but it was not enough to cover my rent and all my medical expenses. Now I had to wait 4 months in order to get that. It was beyond belief.
I didn’t even have bus fare to go to Martha’s Table or the Food Bank to get food.
Finally after 4 months I had one more return to the psychiatric ward. I had a situational depression that no medication could treat. I got to stay there for 9 days, eat some healthy food, and restore myself.
I am now back on ODSP but the hardest thing I have ever done is try to do nothing. I apply for jobs and volunteer jobs on a regular basis but I don’t always get called because I cannot do the equal tasks to everyone else.
If you were to ask me to sum up, in a nutshell, why I am in the poverty trap, my answer would be I did not gain enough self-confidence and strength as a teenager to overcome the bullying at school, the many depressions, and I did not get the post-secondary education at a normally young age. The longer you go without getting that good start in life, the harder it will be to break free of the poverty trap.
It is wrong for the government to be cutting funding for things like the special diet allowance. We need to speak up collectively to ask for more income for people who are disabled and, through no fault of their own, cannot get a job.
Until this happens, the poverty is going to continue and, much as I hate to say it, I’m going to be thankful for those hard-earned tax dollars that you are paying in order to keep me alive. If you are willing to take the risk and hire me contact CFRC at 613-533-2121 and they will tell you how you can find me.
I want to thank you so much for listening.
I have blown a lot of minds yesterday at the Queen's University Symposium on Poverty that is going on from October 14 - 16th in conjunction with the production of this radio show.
It has been top-notch fantastic. I actually had someone reach out and hug me yesterday - actually touch me and make me feel like a welcome, and very valuable human being. It put me into tears of joy.
By sharing this story and that about the effects of trying to survive under these very broken and flawed social services policies. One guy, a nurse by trade, spoke about his experience working at Street Health in London and in groups that are trying to eradicate homelessness. He spoke of the behaviours observed and how policies were being set to try to keep people in line, and then I spoke about how I responded on the receiving end of those policies.
For example, he mentioned how they used to give away socks and bus tickets and how some people could never seem to get enough - they were too needy.
And I said, I am one of those needy people. That's because I don't want your socks or your bus tickets to be just given to me. I want to be accepted for who I am, treated like a valuable person who can contribute in some small way to society - either by working, volunteering, providing input or feedback and then working TOGETHER to help solve the problem - not have the input taken and then the person (who is getting paid) take my input and adopt it into a thesis or theory that will carry them on as a valuable contributing citizen in this world, etc.
I even shared how, when they caged me in the psych system and had me locked up in seclusion, how I would fight out. I couldn't break free of the stigmatization and overmedicating being done by the psychiatrists so I changed my mindset to one of, I'm going to give you a run for your money. If you're going to keep me locked up, I'm going to fight out and make you work hard to keep me under control.
I was identical to that Ashley Smith teen who was incarcerated in a youth detention facility for throwing an apple at a cop, and then who fought out about being caged for such a minor offence. She spiralled out of control, was eventually transferred to 19 different prisons, and finally committed suicide in Kitchener.
The only difference between her and me is she was in prison, I was in the psych, she finally succeeded, and I made multiple failed attempts to do the same thing. Thankfully the drugs caused the walking problem and sleep apnea so that the psychiatrists finally turfed me out on my ear. When they realized they caused permanent damage to my legs, they washed their hands of me, my GP got me off the medications, the mental illness vanished, and I have never looked back.
Please read my other Blogs:
Transit: http://wheelchairdemon-transit.blogspot.com
Health: http://wheelchairdemon-health.blogspot.com
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