Some time ago I ran into a bit of an issue. You see, I applied for AISH, and as with all things in life, found that what I had hoped would be a simple matter of filling out roughly 2/3 of a JK Rowling novel and ensuring that I crossed my T's and dotted my I's, turned into a bit of, shall we say, a feces festival.
Let me offer you a tiny bit of a background on myself, seeing as how the individuals in your offices undoubtedly censored all of the letters and emails I sent your way some time ago.
When I was eleven I was diagnosed with scoliosis. By the time I was thirteen, my curvature was at 75 and 30 degrees. At 50 degrees a surgery is considered a necessity, at 75 degrees, your lung capacity can be compromised by the curve. The movement was quick and unexpected, and my surgery was basically considered an immediate need, lest I lose use of my right lung all together. I was fused from T1 to L4, which medically, translates to "a flipping large portion of ones spine." For a thirteen year old, to be fused with bone and surgical steel... Well, let's just say it was an intense procedure that has altered the course of my life completely.
But the story doesn't end there! Because when you are thirteen, you aren't done growing, and when you're still growing any medical treatment is basically at the mercy of the power of your body. Ultimately, I have four more surgeries to correct problems that have resulted from having my spine fused as such an early age. You see this picture below? Guess what it is. Go on, guess.
Let's jump ahead to modern days. I am suffering from severe and chronic back pain thanks to my surgeries. My remaining lumbar vertebrae are a twisted mess and I have degenerative arthritis in them. I am have frequent bouts of sciatic pain thanks to the nerves that are caught up in the whole mess, and when my back cracks and the sciatic pain starts I can literally not move.
It is, you might say, a bit of a bummer. I am jumping from medication to medication, intense narcotics for my age. Long acting morphine, Lyrica, Cymbalta, short acting morphine, Baclofen, BuTrans... The list goes on. You can always take a bit of this and a bit of that for the major things, but there are flare ups where no medication in the world can stop the pain from forcing you to the couch. There are moments when the pain is so deep inside your bones that you feel hollow, like the skeleton of a bird, but heavy all at the same time. There are these moments when your body starts to rebel and spasm against you, and in those awful, terrible moments you can feel your bones being wrenched to one side, out of position, all because the power of your disease is stronger than the power of medical science.
Those times blow major chunks.
To deal with this pain, you need medication, and to pay for medication you need money (or access to an excellent black market source, I suppose. It's not as if Alberta is renowned for it's back alley operations.) And about a year and a half ago, I no longer had the money. I didn't have coverage either, not that it made a difference, because at the time my medications wouldn't have been covered by any insurance plans. Not Blue Cross, not Manulife, none of them. Well, that's a lie, one of them would, but only up to $500 a year, which would have amounted to exactly a month and a half worth of that medication. It was hardly worth the premiums.
I hear about AISH, and how the incoming new Premiere (that's you, Alison) was increasing the monthly AISH allowance. Bonus! I think. I only need about $300 a month to cover all my medical expenses. The rest I am fortunate enough to have my mom for (Keep in mind, this is a woman practically bed-ridden with debt of her own. I wasn't about to ask her to pay for my medication; and my absent father didn't have any money to spare, even if he wanted to offer it up.) So I fill out the AISH paperwork, get the information from my acting family doctor (the previous GP I had been dealing with was away on maternity leave and then started at a new clinic. At the time, I had yet to reconnect with her.)
Somehow I manage to cram my defense into the minute boxes on the AISH application, and away it goes into the mail. I must have waited six, maybe even eight months to get my rejection from AISH. Let's see, 8 months times $300... I spent roughly $2400 on medication in that time. I wasn't employed for a solid portion of it, being unable to find a job that didn't require me to be on my feet for eight hours (one of the cruel realities I've had to face. If I was able to stand and walk no problem, I could easily get a serving job. Unfortunately, that's not in the cards for me.) September rolls around, as does the rejection, and what does it say?
AISH doesn't believe that my condition is severe nor permanent.
Right. Okay. Well, first off let me try to explain this... You can't unfuse a spine. We don't currently have the technology for it, so unfortunately, no, my condition is permanent. And as you might gather from the pain that has been increasing over the last ten years, it is not about to get better any time soon. When you are paralyzed on the couch from pain, it is severe. When you are missing post-secondary classes for vital doctors appointments and to try different treatments on the off chance that something might work, it is severe. When the pain bring you to tears, makes you difficult to deal with (thank you, patient loved ones), forces you to stop your favorite activities that don't even involve aggravating your condition (such as writing), cuts off some air flow to your lung, forces you into the ICU after a surgery, causes you to have a surgery far too early, is described as a highly unusual case of scoliosis, and becomes the driving factor of your existence, your condition is severe.
So tell me, Alison, how anyone within the government, within social services or the medical community, has the gall to tell me that my pain is not good enough for a bit of help? If the pain I have now, at almost 24 years of age, isn't 'good enough' (for lack of a better term), what do I have to do? How much pain for I have to be in? Do you want to break it down on a scale of one to ten, because I have filled out more than enough of those scales in my life time and can tell you without hesitation that my average pain is at a 9. What's your pain level at today, Alison? Feeling okay, are we? Feeling perky I bet!
Of course I was going to appeal the decision, and damn it all if I wasn't going to make the case of a lifetime in front of a panel that would essentially decide my ability to access basic health case.
In case you haven't looked at the AISH act recently, there are a few things you ought to realize. AISH support is to be used in the support of the necessities of human life. Well, Alison, without my medication I will not be in any particularly state of 'living'. In fact, one might argue I would be as close to the living un-dead as I could possibly be while still having blood circulate my veins. Your government makes wild claims about who and what AISH is meant to support, and yet there seems to be no consistency in the release of AISH funds. One of the AISH workers even had the gall to tell me that it was not up to them to monitor how funds were spent.
Are you freaking kidding me? Are you absolutely kidding me? Where are the checks and balances? Where was the little box on the initial form that said "Please indicate how much support you expect to receive from AISH" in order to show those red-stamping my form that, hey, I'm not after a free ride, just a bit of help with my medication!
So we have no checks and balances, differing definitions of 'severe' and 'permanent', and then there is the use of the term 'co-habitating partner'.
Let's be clear here. The province of Alberta does not use the term 'common law' (which is generally looked at to be six months of living together consistently.) Instead, we use 'co-habitating partner' which requires three years of living under the same roof. Three years. Very important. So according to AISH, if you are married or have a co-habitating partner, their annual income must be included in your application.
Why then, when I am just moving in with my boyfriend at the time, am I told that his income needs to be included in my reassessment form before I can appeal the initial decision? Because, as your people told me, we will be living together and thus are 'co-habitating partners'. Interesting that despite the fact that we hadn't even moved in together at the time, we were already deemed co-habitating partners according to Alberta laws.
So you must understand my confusion. Is it three years? Six months? Or are is AISH and the Alberta Government predicting my living situation for me with some sort of crystal ball? If that's the case then I have a crystal ball of my own that says 50% of all marriages end in divorce, so maybe you could just give me some support now, and then we'll cross the other bridge when we get to it? What's that? It doesn't work that way? You're outside of the law, are you? Outside of lawful definitions that have been put in place to protect residents of Alberta?
Oh sure, you might be all of those things, but you aren't outside the reach of Alberta citizens, and in case you didn't notice, your little stunt this Spring with the slashes in education and healthcare haven't made you the most popular group in the Province. I almost wish I had voted Wild Rose.
Let me make this clear, Alison. You can prevent me from getting the medical support I need. You can pass me off to one of your underlings to deal with. You can even choose to ignore me, but I will not be forgotten. I have pain, and I will live with it every day for the rest of my life, and because of the inability to apply checks and balances by your government, and the incompetence of AISH in general, my pain is not and will not be properly dealt with because I can't afford the medication I need.
You can silence my words, you can ignore my points, but dammit all if your bureaucracy doesn't do a thing to shut up the pain I live with with every day of my life.
That's on you now, and it will be until you make the changes that are needed.
Sincerely,
Kathleen Sawisky
