Stop patting my shoulder!
I have stopped talking about my visual impairment because I am fed up with so-called encouraging words and patting on the shoulder. Everyone who knows me knows that my bad days doesn’t depend on my poor eyesight.
Joachim HenstadTitle: Assistant
I don not mind if you laugh at me when I am waving or saying hello to complete strangers. Or when I am confusing my wife’s friend with my own daughter, and ask her to clear away the table. I also understand that you might have opinions on why I bought a motorbike in Mexico before the kids arrived. But spare me your pity.
I have degenerative macula, an eye disease that causes the optic nerve to calcify, so that the clearness of vision gradually worsens. The result is that I cannot, or more correctly, I am not allowed to, drive a car. My head often gets in the way of others, for instance while watching television. That a rhino easily becomes an elephant and a lion turns into a hyena makes visits to the zoo a source of great material for stand-up comedy. I don not ”see” anything depressing in this, do you?
Demand something of me, please
As an individual I have never, or very seldom, complained of my disability. It is an issue that does not bother me. But on every CV, action plan, application for funding, and job interview, it is always been a high priority.
When I was most actively participating in support actions through NAVE, the Norwegian Labour and Welfare Administration, and the least active in every other area in my life, it reached the point to where I viewed my own disability as synonym to getting paid. Scary, but true!
Before I got a work placement and later a regular employment at Funka, I viewed demands as pure scaremongering. And to be honest, during my period on work placement my fears were confirmed. It was with sweaty palms and enlarged pupils I received the first job requirements. From the formal ones like working hours, deadlines and internal guidelines, to the more informal, ”do you have a minute?”, ”could you do me a favour?”, and ”here”.
As time went by I sensed a pattern. For every task I fulfilled, I became more and more aware of my own place in the business. The palms became drier and the pupils smaller. Demands were no longer scaremongering, but rather a vote of confidence from colleagues and employer. The work placement was over!
Today I have worked at Funka for three years and accessibility, Funka’s area of expertise, is no longer unchartered waters. Today I fearlessly swim in an ocean of abbreviations and acronyms like WCAG 2.0, W3C and WAI-ARIA. ”What?” and ”huh?” has been replaced with the Discrimination and Accessibility Act and Mandate 376, largely thanks to demands.
So, all you employers, subsidised activities and fellow human beings out there, stop patting my shoulder because you see me sitting five centimetres from the screen or the form that needs completing. Do it rather when the task is completed or the demands are met!
Related chronicles by Joachim Henstad
30 January 2014
Funka’s assistant Joachim Henstad fights for better accessibility but gets beaten by the king of the forest.