The Invisible Ones

This entry comes mostly because I wanted to know what it was like.

There are unspoken assumptions that, as someone with a visible disability, I have to 'contend with' on a daily basis. But what about those who have assumptions that are even less spoken of, that may be completely mute until there is clearly evidence of pain? And even then I imagine that there are assumptions that serve to belittle, dispute, and write-off that individual with O.I. All because why? Because they have a 'less severe' form of the brittle bones condition?

I am someone who considers myself with a less severe form of OI type III. Because while I spend most of my day in either a power or manual wheelchair, I have had fewer surgeries and other respiratory problems than many others with OI type III or IV. I'm able to stand and walk with assistance of objects around me or a walker, I don't have a rod in my spine (only in both of my tibias), and the only daily medical procedure I need to remind myself about is to charge my power wheelchair at night.
But medically I am not on the scale of 'less severe' because I have very obvious bone deformities and my mobility is calculated as having to spend whatever percentage of my day in a wheelchair. Medically someone with a less severe form of O.I. might be of average or "near-average" height. That individual doesn't have an obvious barrel rib cage, they might not require the use of a mobility aide, and might have a few dozen fractures in their entire lifetime. And because they might not look disabled I think there are a couple liberties I am able to take that they are not:

I do not have to worry about people looking at me funny when parked at a handicap spot. I do not have to do much explaining or carry around a letter stating "the official diagnosis" when I go see a new doctor. Although going in to a crowd of people isn't the safest, 90% of the time people will get out of the way because they are aware of my wheelchair. Having a visible disability means that there are things that I don't really have to explain, and for better or worse - I'm sure it has saved me some amount of physical pain and broken-record explaining yet again.
For people without visible symptoms of O.I. or any other disability I am under the impression that 'coming out' as a disabled person is a wholly nerve wracking process. When I talked to my elementary school class about it there was no question about "Why is Sandy talking about why she's different?" It's obvious why, they could see it!
For an elementary school class it might be hard to wrap young minds around the idea of: if you can't see something, does it really exist? Isn't that just imaginary? And if it only exists sometimes because you can see it sometimes, how does that change things? Is it easier to forget the disability? Because I sometimes forget the presence of my wheelchair and my friends do too, but someone without a visible disability - 'forgetfulness' could almost seem like an outfit choice. Sometimes you see me wearing my watch and sometimes I forget and leave it at home.

And it seems incredibly unfair to me that the more others might 'forget' about their less-severe form of O.I. the more that person needs to remember. The more that person might find themselves needing to remind, re-explain, insist, prove, 'come-out' as disabled again and again. But then I am sure there are those moments when their 'invisibility' is a privilege, an undercover passing as just one of the others because I think that would be easier?

Maybe I'm totally wrong about all of this? Because I would really like to think that we are the ones who choose what it means for the things people see about us.

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