7 April 2018
After a catastrophe, the insurance company gets involved. In my case, because I am a resident of New Zealand, the country’s national insurer came into the picture. The Accident Compensation Corporation (ACC) people do their best to assess the situation and help the injured get back into life covering everything from medical care through to the equipment and therapies that support independence. It is the ‘assess’ part that is on my mind of late.
Several months into Claudia 2.0, the ACC sent me to a specialist physician who assessed the nature of my impairment. His job was to describe the physical impairment as well as its likely duration. What he discovered and described was not news to me. I am paraplegic and the impairment is permanent. The degree to which I am permanently impaired, according to his assessment, is 78%. Let that sink in. That leaves 22% of me unimpaired.
Like any good insurer, the ACC uses this information to make decisions about the support I need, the length of time I will need it, the chances of me getting back into the workforce and staying there, whether I need vocational assistance (i.e. to learn a new occupation), and the level of compensation I am entitled to for the injury. They have formulas, of course. They have calculated values and assigned figures to everything.
Because of my head injury, I suffer from fatigue. Like most people, when I think of fatigue, I think of feeling tired or sleepy or even a little sore. Brain fatigue, I have learned, is quite different. I don’t feel anything physical, but I do sometimes feel overwhelmed, or brain-tired or cranky. These are signals that I need to rest my brain – give it a break from stimulation of any kind for just a little while. For this reason, I have not returned to work full time – four days is quite enough.
The insurer covers that one day – meaning my employer pays me for five days and ACC reimburses them for one of those days. Like any good insurer, ACC sent me to another specialist physician, this time to assess whether I am likely to ever return to full time work. It is his job to describe my condition and its likely duration. What he discovered and described was completely in line with what we discussed during the appointment and was true to what I feel, but one line of his report stood out to me and continues to throb in my head, “Looking at her total productivity and overall work hours, she is most likely operating at around 70-75% of her pre-injury capacity”.
Reading that, all I could think was that on my best day, I am 3/4 of what I was.
It will not surprise you to know that I have been thinking about this a lot.
First of all, fuck the 75%. I won’t let it be who I am.
Second, what can I do to make sure I’m getting all I can from what works? Which leads me to a bit of discussion that goes on in my new tribe about the use of the terms ‘disability’ or ‘disable’ or ‘handicap’ or ‘special’ or whatever else gets put in front of or behind the word ‘person’. And yes, it isn’t just about the word but about placement – does it go before ‘person’ or after ‘person’? Mostly, I find these discussions tedious. Treat me like a human. Don’t be a jerk. We’ll get on fine. But recently I came across something that made me think twice. Some people prefer “person with a disability” because it puts the fact that we are people first. Others prefer “disabled person” and the reason really stuck with me – although I was impaired by an accident, I am disabled by the world around me.
I am unable to enter buildings if there are stairs and no ramp, I am unable to use a toilet if there isn’t enough space to turn around, I am unable to reach the counter if it is too high, I am unable to board the bus if it doesn’t drop to the curb, I am unable to shop in some stores if the aisles are too narrow. When the world is designed with all levels and types of impairment in mind, all people are enabled to do all of the things I’ve listed. I am disabled by poor planning, lack of foresight, assumptions about my capability, prejudice, ignorance, and thoughtless design.
All of this came together in my head to remind me of a speech made in 1863 by a freed slave called Sojourner Truth. In her speech ‘Ain’t I a woman?’ she says
If my cup won’t hold but a pint, and yours holds a quart, wouldn’t you be mean not to let me have my little half measure full?
I never understood this so clearly as I do now. If I can only rely on 22% of my body and 75% of my capacity and you can rely on 100% of both, wouldn’t you be mean not to let me have, do and be all I can? Allowing me to be all I can takes nothing from you or from anyone else.
To be clear, I do not blame anyone but me for my impairment. I am not suggesting for a moment that if the world were better designed, I would be made whole. I acknowledge that I have work to do to get the most I can out of all I have. My plea is that the rest of the world doesn’t hinder me in that pursuit.