Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.
In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.
I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.
For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.
Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.
This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.
A Multitude of Musings 
It is only the comorbidity of my six different mental illness diagnoses that enabled me to win a disability claim. I am constantly under a microscope by people who don’t ‘see’ how I could be that impaired. Well, if the mentally ill could use a simulator or ‘broadcast’ our distorted thoughts and behaviors on a screen for all to see, we would. It is not a simple matter to ‘win’ a mental health disability in the U.S. so the fact that my every review over the years remains viewed as severe impairment by the doctors helps alleviate the judgment I face.
Then I hear of people who are denied even when they can barely shuffle a few steps at a time and I feel guilty, and angry at the system that puts people through that garbage.
I had 4 doctors, a nurse, a therapist, and a career advisor all backing my claim or I don’t think even with the brain damage I’d suffered in 2000 I’d have been granted the claim.
Bottom line is, judgment is easy. Putting yourself in another person’s shoes and trying to imagine living with their impairments is the hard part most people simply cannot be bothered with.
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So true. Here in the Netherlands, psychiatric disorders (including autism) are exempt from qualifying you for long-term care. I had to prove my impairments are mostly due to my blindness. That isn’t easy, because they reason most people who are just blind can live independently perfectly fine. Then again, multiple disabilities’ impacts are more than the sum of each disability combined, because having one disability may make compensating for another harder. That’s how I was granted long-term care funding eventually.
I totally understand judging ourselves and others is easy.
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I hope with all my heart that the days get better and better for you, you’ve earned it with your hard work and progress.
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