from the lab rat's desk september 15, 2007
Monday, 17. September 2007, 03:08:39
It is getting chilly at night and the days are less and less sunny, and I dread the cold winter ahead. There is more I dread and it bother me to even say of write of it, denial offers comfort, especially when there is just and overwhelming amount of the negative in day to day life.
Where I live is no palace, definitely not. I am at the bottom of my life without much chance of improving my lot. Whereas some years ago I had a full time job and my own business, and was teaching master classes a couple of times a week, now I am a breath away from homeless. My crime was that I had the unmitigated gall to lose sufficient numbers of brain cells to an orphan disease, for which there is neither cure or treatment, nor any big and powerful organization to fight for research and quality of life. I didn't get this as a result of neglecting my health, taking part in risky behaviours, nor abusing substances. It was just my rotten luck.
Where I live is no palace, definitely not. I am at the bottom of my life without much chance of improving my lot. Whereas some years ago I had a full time job and my own business, and was teaching master classes a couple of times a week, now I am a breath away from homeless. My crime was that I had the unmitigated gall to lose sufficient numbers of brain cells to an orphan disease, for which there is neither cure or treatment, nor any big and powerful organization to fight for research and quality of life. I didn't get this as a result of neglecting my health, taking part in risky behaviours, nor abusing substances. It was just my rotten luck.
Once I had a diagnosis (MSA) some of the other odd problems started to make sense. The heart attack at age 35, the infarct at 40, the weird results of blood tests which twice had me falsely reported as having HIV/AIDS (1985-6). I had been diagnosed with Epilepsy, Meniere's, IBS, depression, possible MS. I waited lengthy times for testing, often 6 months in between tests and seeing specialist. I had hoped reporting symptoms early would give me the best chance of restoring my health and keeping me working. With struggles, fighting to keep going and raising two teenagers by myself, I tried every home gown "cure" I could find. I had a disgusting KowBucha mushroom floating in a large jar on my fridge, I fed it tea and sugar and drank the disgusting brew which resulted religiously every morning, to no avail. I drank teas which probably kept me going even though the ingredients are now deemed dangerous, it kept me working a few years longer. MY employer at one point was so concerned for me I was taken to her specialist for celiac disease and twice fo9llowied an elimination diet which proved I had no problems which were food related. Why am I trying to impress you? Because I feel I am being punished. Punished for being sick, punished for being poor. Punished for living longer than it was thought I would. Punished for trying to make my own choices. Punished for trying to live my own life. Because I want to be heard and no one listens to those stuck on the junk heap of humanity. Once you've become someone who cannot pay taxes, cannot be employed and basically has no future beyond collecting a disability cheque, you are a non-person. When non-persons have problems they are unlikely to become solved unless it makes for good television, sometimes that happens, rather like a lottery, you are the pity party of the day, rah rah, they throw you some kindness and feel good about having "done something". I have a roof over my head. It is always tenuous. If something should happen, either financially or because the tenancy is ended for other reasons, there is nowhere to go, not anyplace you could seriously consider a home. I live nin a building on the East side. A mixed bag of substance abuse, street sex trade, old people and disabled on pensions, the recently paroled, newly immigrated and the recovering addicts. My apartment would be too rich for me if I did not share it with my also disabled son. If we had a falling out neither of us would have anything more to look forward to than shelter or a room in a fleabag hotel if we are lucky. That is my nightmare, the what if? The building I live in has lots of problems. It is not well maintained and it is old. It has so much mold in some apartment the board of health closed them from use until properly cleaned up. There are bedbugs in "red" zone but occasionally they make their way. I have a myriad of potions and powders to discourage infestation and so far so good. Is this what sick people should have to contend with? On the bright side I have a balcony and I can keep my pets, those are all good for my health and not negotiable, I would not move anywhere without my pets, garden and my son for as long as he wants to be my roommate.
I worry, Worry is bad for my health. I have reason to worry. There is a lot of drug trade and probably sex trade too going on in the building. There are 56 suites many empty (thanks to bugs and mold) and squatters readily find their way into the building. Most of the calls to the police from here are the result of people who do not live in the building. MY manager was overwhelmed by all the troubles and devastated at how badly the police treated both the tenants who were more likely the vitims of crime and the manager (a small woman about 5'2" who bravely stands up to the worst of people). She was told that if there were more troubles in the building the building could be shut down and all of us would find ourselves homeless. CAN THEY DO THAT? I don't know. I haven't found anything on the web to substantiate a law or codicil to the tenants act that might allow this, however it is hardly written in plan language and interpretation could really vary by quite a bit. What if they could? The city has a less than 0.3 vacancy rate. The vacancies there are are at market value (bachelor at $1200), and the rate for shelter if disabled is a maximum of 375.00. I am mortified, and if my building manager is shaking at the prospect of having the whole building closed due to criminal activity, 50 some suites worth of tenants, families, disabled, elderly, all suddenly have no place to go. Apparently if you have room,or a couch to sleep on, statistically this city no longer considers you homeless, which would mean that if my daughter or sister allows us to camp in the living room, we would not be considered homeless and no great effort would have to be made to house us. I am aghast that a room with shared bathroom in a rat infested hotel suffices as housing for someone with disabilities, or for that matter anyone. Your privacy and safety are gone, your belongings likely gone because where would you put it? Does that not seem like punishment? Families risk losing their children into that bottomless pit of horrors called foster care while parents struggle to make a life sufficient to regain their children. How in god's name can you not fall apart? Yet they seem surprised that so many homeless have mental health issues. I am not surprised. State of anxiety, that's where I often find myself these days, with every siren I have to wonder, is today it? Is this where it gets even worse? I have already lost security, enjoyment of the premises I rent, privacy is the first thing lost when you become disabled, just a slight bit better than being a ward of the state but pretty damn close. In return you get that monthly cheque, the one that covers you for part rent and one or two meals a day. The ministry is short on social workers so it has been more than two years since I've seen one. Even though in the beginning I was promised a daily help with housekeeping and other services, well those no longer exists. The food dollar is having to do some major stretching as everything has become much more expensive and we haven't had a raise in many years.
Even though the balcony is my bit of paradise, is is a part of a hellish building,which if I didn't have a big dog and a son living with me I could not deal with. Old building, mold, no insulation, poorly heated. We've had drugged out crazies trying to climb into the windows the balcony. Women especially disabled women are easy targets in housing where there is no privacy, and if we are abused where do we turn? Will you just be shifted to another shelter to have it happen all over again? It isn't just our building, the neighbourhood is under policed. Our building manager is not the police it is not her job to keep the peace. It is her job to rent the units and call the plumber of carpenter when needed. That the neighbourhood watch and police can rag on her over it is bizarre, if anything it reflects on the police. If the police did their job we might feel safe. I've called the police more than once when they did not respond, never showed up. It will get worse with the continued gentrification and the NIMBY bands of neighbourhood watches. Poor equals undesirable. Instead of solving that whole poverty business they'd like to see us brushed under the carpet of wholly relocated "elsewhere". We're all suffering from the anxiety that comes with being poor, unwanted, always looked on as the reason the city isn't pretty enough and bringing the property values down. Freedom is having choices and being allowed to make your own choices. I feel I have none. Any day I could lose what I call home, and where I end up next will not be a choice, unfortunately to sleep in the park requires a wellness level I cannot meet, or I would take the park bench, not that it's legal in this burg to sleep in the park, there is a hefty fine. The worry is making me more ill, not that anyone cares. How far are we from poorhouses, or the desire to reduce the population of unwanted by any mean necessary, are we going to be targets, Guinea pigs eventually? Ever wonder why the homeless seem paranoid? MAYBE THEY HAVE REASON TO FEAR. I am looking for answers, can they put us out or not? That and we hope to find some kind of housing solution that presents a choice, something we'd actually not do out of abject desperation but because we can see ourselves being happy and secure there. When I was working all those years ago I thought there was a safety net, that' what all those taxes were being paid for, why not, the government kept telling us how rosy the finances were and the ever growing surplus - HA!
From "UN Convention on the Rights of Persons with Disabilities" Article 28 Adequate standard of living and social protection 1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability. 2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures: (a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs; (b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes; (c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and r.....http://www.afinemes.com/textile/?id=195 or http://www.afinemes.com/wpress/2007/09/16/from-the-lab-rats-desk-september-15-2007/
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