I am here thinking about what clever and wonderful post to do for today, except that I can’t breathe. Or rather each breath requires concentration, effort and pain; a whole sack full o pain. Indeed, I can barely see the screen it hurts that bad, and I’ve already taken my opiate painkiller. Now, you could reasonably point out, it seems a bit, um, hypocritical to deliberately go and try to literally tear down as many muscles as you can and then complain the next day about pain. Well, I DID mention The Plan has some drawbacks, the first of which is lying two days a week minimum in bed in agony. But when you are playing for life, death, mobility, functional internal organs, and degrees of independence, you don’t make small bets.
Which gets me to my question, what use am I as a human being? Why should anyone come to help me eat, or help me to the bathroom, or help me to bed when I can’t move? Why should I be taken care of? What purpose do I serve in our national and social framework? The plain fact is that I am not well loved by many people: my family whether immediate or extended isn’t interested in assuming the burden. The reality is that care isn’t coming from family. So it falls to society. And I, as a rational member of society (albeit only barely rational in this level of pain) don’t see the gain. I am not an “angel” spreading goodness by the love that shines out of me despite my disability. Nor am I an icon to be held up as a person who deserves what they got for leading the life they lead: a sort of living public service announcement. If I was taken to schools my message would be; drink more, have sex, act a bit wild because if you exercise daily, eat a healthy diet, never do drugs and invest in education and your future you could end up in a wheelchair like me.
There is, I realize a gigantic industry of people who make their living off my existence. I have a case worker, I have a occupational therapist, a recreational therapist, a physiotherapist, a GP, several specialists, middle managers at VIHA to allocate money to the listed workers as well as home care workers, home care schedulers, middle management for home care workers, respite managers and workers. Then there are the medical supply stores that sell you a bath bench for $250 which looks very much like a plastic lawn chair sold at Target or London Drugs for $25 (but if you don’t get it from the medical supply store then your insurance won't pay); there is the company which sells me oxygen, there are the people at the insurance offices, the disability assessment officers and the disability investigators. Those are but a few of the primary people who make between $40,000-$65,000 annually administering to a small collection of people like me. There are also secondary people who make money off of me, like the Inland Revenue/Revenue Canada people who spend time to send letters requesting more information or auditing your medical deductions, the administrators at all of the doctor’s offices, EMT’s, and all the technicians for the test that are ordered, bloodwork that is drawn by one person and processed by others. Then there are the drug makers, the sales reps and the pharmacists for the medications I am on. These people all make some sort of living which requires that people like me exist. They are all hired, judged on their skills, employed and paid to take care of people like me, without any input or involvement of people like me in the process. Nor, do we receive any share of the financial remuneration they receive, even if, for example during medical test, we do more labor than they do.
Being disabled is costly. This week I made $40 for coming up with a better word arrangement for a yellow pages ad by people who knew me before I was disabled. My average costs this year to keep me mobile, and as healthy as we currently know how along with emergency aid is averaging $250-$300 a week. So yes, you could get a very nice two or three bedroom condo and pay that mortgage, or you could be married to me; which Linda is, because that is legal in Canada. It is too bad that in Canada, as long as your partner makes enough money for both of you to be very, very poor, then they are required to pay for your costs. And yes, that is what we pay for AFTER insurance; without insurance, I cannot imagine how wretched my life would be like (no boxing for a start!).
I have been contemplating the amount of legislation that has gone through or is present in order to protect the people who take care of me (like they don’t have to lift me, that is a 911 call, which, whether they take me to the hospital or not has doubled last month to $85 per callout, whether I make the call or not). Legislation to make sure I am disabled; legislation on who can and cannot be considered disabled, legislation on how much disability money I must give back if I make money, and legislation and audits confirming I am disabled. I have not yet found any legislation to encourage or assist employers in actually hiring someone with a disability. As my home worker says; “I know Safeway hired people with Down’s to bag groceries.” Well, that is true, “Have you seen any workers there in wheelchairs?” Uh…no. Any in Starbucks? No. Any wheelchairs in ANY major public retailer with the exception of a medical supply store? Well, I haven’t yet nor had she. “But,” she pointed out, “They might be in the back answering the phones.” Well….yes.
Last year, I applied for government research jobs, writing government position papers and university teaching positions. This year I have had three job offers: one was to fold a pamphlet and put it in an envelope (a job I ironically did for 4 hours at age 16 before quitting, how we have turned full circle), a job answering phones and a job putting away DVD’s which after two days I was told that the able bodied staff could do it faster.
So today I called the company, Triumph, that the British Columbia Government has given 500 million dollars to get people off disability and into jobs. They have “courses” and career counselors. What I wanted to know was, “Do you have access to part time government jobs.” Errrrr….no. Because of the 140 government jobs offered weekly, about 139 of them are full time and a majority of them require the ability to work overtime, to travel or to drive (or all three, as for instance Linda’s job does). So I asked the person at the other end, "What I want to know is, could you get Stephen Hawkins a job?” She seemed confused.
“Well,” I said, “He needs an attendant, he can’t work every day and he probably can’t work full time, plus he has a VERY limited resume. He might be brilliant, but could you get HIM a job?”
“Uhhhhh….” There was a pause, “After the orientation there will be a time for questions.”
“I just mention this because I notice that all of the “success stories” on your web page involve people with depression and back pain and going into entry level positions.”
“You know, those are things you could ask in the question time.”
I plowed on, “Indeed, the one person who was closest to me was the woman who had a stroke and had a B.A. in Business Education and was a loan officer, the equivalent of a level 14 or level 18 administrator, and you got her into a “home business” of doing data entry, which is a level 5 or level 7 administration task.”
“Um….” Another pause, “That’s something you could bring up with your career team.”
“I just mention it because that’s one of six employment you list as a “success story””
“I have another call coming in!”
From what I can gather (I have an orientation meeting with them on Tuesday), that once I sign up, they get authorization from my doctor that I am disabled and then get authorized funding from the ministry to “help me.” What I have to wonder about is if this is going to be like my recreation therapist who wanted to hold endless meetings of which SHE got paid for each of them and in the end she arranged NO recreation for me (I did it all on my own). I mean, this should be Pay-or-Play, right. Because if they are paid whether they find me a job or not, I have to think they are not going to be very motivated to find a suitable job for someone like me who is severely disabled. While if they got paid ONLY when I found a suitable job, they might really go the extra mile.
I was even less impressed (read: enraged to the point of screaming at the computer) when I found out that they expect the “disabled” placements to perform as well OR BETTER than the able bodied employees and indeed asked the workplace to rate them on ATTENDENCE (“86% of persons with disabilities rated average or better on attendance”). My first thought is, “What kind of crap job is it where attendance is the most notable skill?” and my second thought was, “I am DISABLED you FUCKERS; this means I am not going to be able to compete on a level playing field with able bodied individuals.” Because if I am conscious and can concentrate for five hours a day and I am compared with someone who can concentrate for eight hours plus overtime; I will not be rated “as well or better” than ‘non-disabled colleagues.’ When I go boxing, I don’t box the same amount of time as the other people in the class; I need to take oxygen and cooling off breaks. Plus the next line was that “90% of employers had no increase in insurance costs” by hiring someone with a disability. Oh great! You mean the place PAID to help people with disabilities is trying to convince employers that I won’t have a higher insurance cost? What is wrong with this paradigm? Well, that only “certain type” of disabilities are then desired; and I am guessing the girl with the passing out problems, the need for oxygen and the inability to move at times (along with leaving work in an ambulance a few times a month) might NOT be the most desired “disability.”
Or as my home care worker bluntly put it, “Yes, a cinema COULD hire you to rip tickets at the door, by why take the liability risk when they can hire a 19 year old with no experience but has no medical problems? Yes, it might be discrimination but how are you going to prove it and in the end, it is what they are going to do anyway.”
Right. So, right now, my entire contribution to society seems to be the testing of vibrators. Which is I suppose a noble sort of pursuit. Certainly there is a crying need with Christmas tension coming for someone to say, “People, you need to keep your stress levels down, I’m BEGGING you, please masturbate EVERY day!” But is that really enough of a reason for me to be kept alive? Or am I like the coal industry or the BC timber industry where so many people rely on me for their livelihood that even though there is no economic sense in my existence, I am supported regardless.
Okay, I’m done. I’m still in pain and this isn’t a happy blog but it is a question I want an answer to. I am not a 85 year old who has had children, lived her full life asking, “Why am I still here.” I am a person who has a wonky but still impressively big brain, but in her present situation cannot see a cost ratio reason on a personal or societal level for supporting my existence (It is pretty easy to get rid of me, just lower the hospital bed until it is flat and don’t give me any oxygen).
Gee...that was cheerful....er.....happy thanksgiving?
12 minutes ago