I couldn’t talk for part of today. I thought I was clear enough but no one, not even Linda could understand me. My home care worker told me that I was “pretending” and started to make fun me and my talking, and saying how convenient it must be for me to “pretend” I can’t talk when I don’t want to. Linda told her that, no, this was a part of my condition. But the worker laughed that off because she had seen me a couple weeks ago and I could talk okay then. “You pretend” she tell me. Since I couldn’t make myself understood any other way, I had an overwhelming desire to strangle her.
Yesterday’s hours of erratic heartbeats had caught up with me last night when I was “out of it” though Linda said I was in considerable pain but only able to moan instead of talk. I had already recorded and demonstrated the weakening of the right side of my tongue as well as my vocal cords before Xmas but neither the GP or I knew what we should do about it. Over the break, there had been two instances of the gag and swallow reflux failing as well as waking up choking because saliva had collected in my lungs and stopped enough air for me to wake up gasping and choking. I didn’t know that could happen.
Later, after several hours of rest, when I was understandable, I called the manager of the home care whose response to the home care staff telling me I was a liar and a faker to my face before making fun of my speech disability was 1) “That seems odd.” 2) “I am sure she didn’t mean it” and 3) “I am sure it didn’t happen that way” at which point I handed the phone over to Linda who confirmed that it did happen that way. The manager never said that the action was inappropriate, but that the person would be spoken to. After dealing with this particular manager that if a case worker had told a black client with Parkinson’s not to feel bad about having a brain fog because black people are by nature less intelligent and they complained, I am positive she would say, “I’m sure they didn’t mean that.” What I find so dehumanizing is that assumption that after being verbally abused and mocked about your disability by the person paid $19.59 an hour to assist you; that I, the person who slurs and is a ‘client’ must be wrong until Linda gets on the phone and says, “No, it actually happened.” Why are the disabled automatically to be disbelieved? Not only did this manager NOT ever apologize for the care worker’s behavior (Instead of “statements like that are unacceptable!” I got, “Well you do have a LOT of different conditions” – that justifies human right violations and verbal abuse now?) but also said that they were technologically incapable of reducing that care giver’s number of days; so until a replacement is found, they will be returning. In fact, they will be the next home care giver I get (oh the laughs we will have!).
In somewhat unrelated news, after four weeks of attempting to go to the office of the Income Assistance for British Columbia to apply for Person with Disability Status, I was told on the phone that I had to complete a 10 minute on-line process and then await a call, maybe on Wednesday. Then, if I passed the phone interview, I would have a 90 minute meeting to determine if I qualified for “Welfare.” The person on the phone was adamant; “You can only become a person with disability and apply for that once you are eligible for Welfare.” The on-line session was completely about my requirements for job searching and how I would be required to provide proof of job searching for three weeks before I would be eligible to even apply to receive Welfare. What did this have to do with being a PWD and getting a subsidized bus pass again? It ended with a two page list of things I must bring to the meeting not limited to: “Proof of application to Employment Insurance”, “A current Resume”, “Proof of job Search” and that I could be rejected without sufficient examples of cold calls, applications to advertised jobs and similar evidence of attempts at employment.
I returned to the BC government webpage on the Fact Sheet on Persons with Disability where the application for asssistance states clearly that forms are available to individuals eligible for disability OR income assistance. I called the Ministry back and was put on hold for over 30 minutes to be told that, “I don’t have to go into that now, someone will contact you on Wednesday.” When on Wednesday, as I may be ill, incapable of picking up the phone or in the hospital. This seemed to throw the person on the other end of the line in a panic. “Do you have shelter?” they asked. (Dude, you just made me take a 10 minute on line test to determine if I am looking for work enough and NOW you ask me if I have shelter? Do you have a lot of homeless with laptops and wireless access?) Yes, but I have a severe medical condition. No, no, they couldn’t talk about it, but I HAD to pick up when they called. It was very strange as, according to the Ministry, only if I qualify for welfare, act as an able bodied person and bring a resume do I then get past the gatekeeper to apply to be a person with disability. And if I have a house, or stocks, or anything that can be sold for cash; I can’t be disabled, at least not officially, in the province of BC in Canada.
Why is the agency in charge of people with disabilities, when they have a person on the line asking them what day it is today (me, because I didn’t know) does not check what is the person’s disability. They never asked, because unless I qualify to go on welfare, it didn’t matter to them. Regardless if my disability impairs me from understanding the demands and tasks to be done at very specific times and days. That does seem a puzzler, no?
The point of this New Years post is that though I am ready to try and get a jump on my condition, set up a stable environment and push myself in social, physical, cultural and activist goals, activities, dreams and hopes, there is no point listing them. Why? Because today I was told from my home care company that the only person who could authorize care workers assisting me in taking a bench shower is the same case manager I, my GP and my previous GP have been trying to contact since October so care workers can help apply my oxygen mask. Or to put it bluntly; since I am currently dependant on others to enable basic functions or advance my medical and social stability it looks like this year is going to be a continuation of last. And last year was a time when the time and personnel wasted ensuring that I KNEW that as a disabled person I was not equal to or should try to dream, desire or imitate the life of “normal” people versus any sort of empowerment was at least 15:1 if not 50:1.
The only people who on a regular basis who are telling me that they believe in me, that they are rooting for me, that I DO make a difference in the world and I can continue to do so are the people who read this blog. That is the positive difference in my life. That is what I am thankful for in this New Year. I wrote on my intro in Ouch that “blogging makes a difference” – well, the people who are there, who read you and respond and let you know that my thoughts (while completely and totally wrong) are going to be taken as seriously as the next persons. Right now, that is of tremendous importance to me. People take what they want from what I write and I write so can they do that. But I have to thank all of those, especially those who have disagreed, corrected, dissented, argued against or rebutted my ideas that you NEVER dismissed me because I slur, or because I am in a wheelchair or because I am in some way different. Right now, that isn’t how I am generally treated. And if it wasn’t for the people who comment or email me, I don’t think the self image of myself as YES, being just as equal, just as important, just as worthy a voice would have survived. No one deserves to feel they are a ‘lesser human.’
Anyway, Happy New Year? I hope to amaze and astound you with my latest trick: Hang gliding (hey, they have tandem rigs, so what if I am scared of hieghts!)
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