Thursday, April 28, 2016


Image description: Line drawing of a 'Certificate of Gimp Status' made out to Dave Hingsburger and dated 2016
We opened the letter from the government expecting my tax refund cheque. Instead, we got a letter stating that I had to reapply in order to continue in my tax status as a disabled person. I was directed to the form that the doctor needed to fill out and advised that if it cost not to expect the government to pay. OK. I guess perhaps they expected that somehow my disability disappeared and they wanted confirmation that the wheelchair under me was still real and if it was real it was necessary.

Now, let's be clear. I know I have a disability. I know that my status as a disabled person is real. I knew that my doctor would fill out the form and I would send it in and that all would, hopefully, be well. But even knowing that, going through the process, (spoiler alert: I'm still disabled) was intensely unpleasant. I'm not sure why.

I'm not sure the issue was even with the government asking me to send in new information from the doctor. Instead I think it's the atmosphere that I feel, separate from the government, from those who just assume things about me and those like me ...

... that I'm lazy.

... that I could walk if I had the motivation to.

... that I don't contribute.

... that disabled people like me are a drain on the system.

... that I need to live under the scrutiny of others to ensure my life has no fun or feasts or frills.

... that disability needs to mean poverty of mind, spirit and pocket so that it is duly punished.

... that I am a member of a community of fakers and cheats and scroungers.

I know who I am. I am proud of the disabled community. I know that these attitudes stem from bigotry and fear and even hatred. I know that.

I do.

But the pervasive attitudes towards disability, attitudes which have hardened over the years as people have identified those with disabilities as part of the problem, are so intense that I find myself feeling as if I need to explain to everyone, not just the government, who I am and why I am and how I am. I feel I need to defend myself in some vague way from some vague but deeply frightening adversary.

I now have my medical certificate certifying me as a real disabled person. I guess that's, for me, a signal that the battle continues.


Denise said...

Every 7 years I have to recertify as disabled. Because I have the audacity to have a full time job, the government does not consider me disabled. Never mind my progressive neuromuscular disease that I have had all my life. That doesn't make me disabled in the eyes of the government.

I know my disability expires in July 2020. I have an official letter to prove it. I'm already planning the cure party.

ecodrew said...

Forms like this for my son often get under my skin too, I completely understand your frustration. Sometimes I want to write "permanent disability, stop asking" on the form in sharpie and send it back. Government forms just don't leave room for understanding of permanent/chronic disabilities. I don't expect them to be compassionate, but it sucks having to re-certify.

My wife and I sometimes reward ourselves with a bowl of ice cream after a form like this, feel free to engage in the vice of your choice afterwards, haha!

Unknown said...

Bureaucracy is such a strange monster...hard to believe it all made up of individual humans who make decisions and take actions. The collective results get so skewed from are sometimes good intentions. Our individual and inevitable human weaknesses multiply and merge in strange ways, don't they?
There are always some people who will try to take advantage of any set of rules, for reasons of their own. It means everyone else is inconvenienced to varying degrees, and that the attempts to limit fraud end up harming individuals who clearly meet eligibility requirements.
And sometimes this process that starts with at least some good intentions ends up being discriminatory and harmful in ways that are hateful.
It does seem that there ought to be a way to exempt some individuals with disabilities that are clearly permanent from this sort of bureaucratic abuse.

Alicia Butcher Ehrhardt said...

If they would only THINK before they send these things out!

Sadly, there are people who milk ANY system ever invented; these people, if they become 'disabled' by a real or fake accident, will try to get benefits for it as long as they possibly can.

But to be lumped in with cheaters and fakes BY DEFAULT is disrespectful of the majority who are NOT cheaters and fakes. To require people who ARE disabled to spend their limited energy covering for the others adds insult to disability.

I've been disabled for 27 years by CFS, and for less time by spinal mobility problems. Because I can write, I'm trying to make a retirement career for myself as a novelist (have published first novel! Has disabled main character! Is not inspirational!).

US disability regulations made it impossible for me to do this before 'normal retirement age' because income for novelists is a very erratic kind of income - and they made no adjustments for it in the way they decide work status, but expected it to be the same every month. Fortunately (or unfortunately), the first novel wasn't finished anyway.

But disability status and the ability to do what work we can is proscribed for people under retirement age - the system literally doesn't allow them to write and sell and have benefits be adjusted properly, so they are silenced.

bevd said...

I have a young friend, under 30, who had a stroke. She is finding this EXACT same thing such a difficulty. Yes, she still has a serious brain disorder. Yes, she is still disabled. Yes, her Dr. still agrees. She is several years past stroke. No, she won't be able to drive, to see properly, to live without serious head pain. Does she really need to do this each year?