The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

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Isolated

Chronic illness is isolating.

I have spent the majority of the past five years alone, in a dark room. I no longer attend high school, and I don’t talk to any of my old friends. I’m not saying these things for pity, or sympathy; they are just simple facts.

Chronic pain keeps me from doing or enjoying pretty much everything I used to. I got sick during the transitional time from elementary school to middle school, so making new friends became really hard. Now that I’ve started online school, I don’t see anyone from my old high school or talk to them. The only “new places” I’ve been going are doctors offices – so I don’t think I’m gonna find any new friends there, but hey ya never know.

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After a few months/years friends and family get tired of asking me how I am feeling. They assume I’m gonna better, and forget I’m sick. But I don’t forget; I don’t have that luxury. They get tired of hearing me say “I’m in pain” or feel fatigued. They no longer want to know about my doctors visits or hospital stays. I don’t blame them, the never ending cycle of chronic illness is tiring and generally negative. Friends were the first thing I lost. A few close ones stuck around a couple of years, but now they’re gone too. My immediate family is still here for me, but my extended family never asks how I am anymore. I don’t need/want them to make a big deal about it – but it would be nice if they’d ask about me every once in a while.

Being alone almost all the time makes going out in public hard. I’m sensitive to noise, and the world is one big ball of sound. I never had social anxiety before, but now it’s exhausting being around other people. I feel emotionally drained even being around family. I know I’m gonna have to get over this, because I can’t stay in my room at my parents house for the rest of my life. I want to go to college and get a good job. Both of those things are gonna have to involve being around other people on a daily basis. I can have a negative outlook on life, and when a lot of negative things are going on it makes it 10x more difficult to act cheery and positive. .

If you find chronic illness isolating – you’re not alone. I’m here and probably in my pajamas.

Lots of Love,

Alyssa