Welcome back to the blog!
Today, December 3rd, is International Day of Persons with Disabilities. It is a day to celebrate the achievements made by disabled people. At the same time, it is also a day to recognize that there’s still more work to do, to raise awareness on the barriers and discriminations faced by people with disabilities. So as you can imagine, this is a very important day for disabled people, and of course, for those advocating for this very marginalized group. In celebrating IDPD 2021, I want to share with you, a blog that’s been a long time in the making. I hope to address the issue through my lived experiences, as someone living in the grey area of disability.
Disability, is complex. No two disabled people experiences the same. This is true even for people with the same medical conditions or impairments. Therefore, the “one size fits all” description simply doesn’t work here. But I think, society wants to cut corners, and to make assumptions about disabled people, by doing so, this really hurts disabled people. And sometimes, it can even be dangerous.
Many people living with disabilities (myself included), living in what’s called the grey area of disability. And often, our disability or our ability to function every day varies or changes from time to time, it could change on a day to day, or even an hour by hour basis. But unfortunately, society doesn’t see that, and can’t seemed to comprehend that.
As a visually impaired person, I’ve been told at times, (usually by a sighted person), that I don’t “look blind.” Well, I would say that that’s just “half truth.” And why is that? It’s true that I’m not blind, not completely blind, that is. And it may also be “true” that I don’t “look blind” on the outside. But let me get you educated on this: Blindness (and visual impairment) doesn’t have a look! Just because I don’t look visually impaired, doesn’t mean I’m not visually impaired. Just because I’m not totally blind doesn’t mean I’m fully sighted! I am, among the majority of visually impaired/blind people, that live in this grey area of blindness—not completed blind, and not fully sighted. It’s a complex situation, only we wish that sighted people would at least try to understand!
My experiences as a chronically ill person is one that is even more complicated. I’ve been told that I don’t “look sick” (or disabled) on a fairly regular basis. This type of comments are said not only by strangers, but also by people that know me and very well know that I’m chronically ill. The reality is, that comments like this is far from the truth. My chronically ill body impacts my day to day function in even more ways than my vision loss, even though I dislike this kind of comparison, but this is true, at least for me. My illness changes, not just day to day, but sometimes, hour by hour, and it sometimes changes faster than I can respond. Unlike my vision loss, as long as I have the accessibility tools I needed, I could be just fine, or I may need some minimal assistance from others. But with my chronic illnesses, I simply cannot say the same. Even when I do everything right, I have the tools/medications, and the people, unexpected things still happen.
For me, dealing with chronic illnesses is truly another beast to handle, and a hard one to tame. I’m the type of person that like most—I like to be in control of things. But, with being chronically ill, I’m often not in control. On top of that, I think I’m in this even greyer area of disability/chronic illness. Because most of what I do to take care of my health, people don’t see— because I live alone, and I do most of my treatments at home. I also go to hospital appointments on my own as well. I can function on days when I’m not in a flare or recovering from one. So on the outside, I look fine. And I also think, what’s making my chronic illness particularly even more invisible and hard for others to understand is that, I don’t have tubes or wires attached to me or coming out of my body. I’m not a wheelchair user. I do use a cane, but that’s my white cane, for my visual impairment. And, on my bad or worst days, I’m usually trying to get through it (alone) at home or, in the hospital. I’m never really outside for others to see that unwell, curled up in a fetal position or screaming in pain side of me. And to be honest, that’s a very vulnerable position for anyone to be in, and I don’t really want others to see that. But unfortunately, society is so quick to judge people based on how they look on the outside. So, it’s no wonder how most people don’t see how much I really struggle, just because they don’t live with me. And did I mention? I also happen to look young for my age, so it’s expected or assumes that I must be healthy.
As you can see, I live in the grey area of disability. I don’t “look blind, sick or disabled” by society’s misconceptions on blindness, chronic illness and disability. I only show my face in public on good or better days. I even talk a lot less about my disabilities these days, because I don’t want to be the person that’s always talking about my struggles, or always “complaining.” And sometimes, the less I talk about it, the more I’m making people believe, that I’m probably “all better” by now.
Lastly, I urge you, on this International Day of Persons with Disabilities, whether you are a disabled person or an able-bodied person, check in with your disabled friends or family member. Just because they are quiet, doesn’t mean they’re OK. Let your disabled friends and family have a safe space to voice their concerns. If you are someone like me, feeling like you also live in this grey area of disability, know that you are not alone. Even though sometimes it feels that way. There are a lot of us out there. Reach out if you need to. We’re here for you, we are here for each other.
By: The Invisible Vision Project