An interesting thought for all
I post about this not because I want to further belabor my opinions, but because I think everyone should consider this point.
I came across a website last night while looking for online MG support groups (since Iowa doesn't have any that meet in person). It was a website about "invisible disabilities." The tag line for the link was "But you look so good!" I was intrigued, having had that line said to me numerous times. I investigated the website and was surprised at what I found.
There are certain disabilities that are considered "invisible" such as deafness, chronic pain, chronic fatigue, etc. These are disabilities that you cannot "see" in everyday life. The website discussed the frustration and hurt of those with invisible disabilities and the incorrect viewpoints of others. People often view people with these disabilities as lazy, faking it, or simply making it up. There is a certain amount of disdain for those with invisible disabilities because it doesn't seem like there's anything wrong with them, therefore it can't be that bad.
I was able to apply this information to my own life. Myasthenia Gravis is one of those invisible disabilities. No one could look at me from the outside and say "Oh, she must have MG." I'm not in a wheelchair, nor do I use assistive devices like a walking stick or leg braces. The only physical symbol of my disability is the medical alert bracelet I wear. I get frustrated with people who don't understand or choose not to acknowledge that I need accommodations. Coworkers still assume that because I'm a young person, I shouldn't need to take frequent breaks, and I shouldn't call in sick when they know full well what I'm dealing with. Complete strangers GLARE at me for using my handicapped permit when I'm exhausted. People who look like nice people from the outside feel the need to nonverbally give me their opinion on my physical status. I've often been tempted to confront the glaring individual and say, "I'm sorry, did I ask for your assessment of this situation? Did I ask you to comment on whether or not you THINK I need this parking permit?" Many of those people would be dumbfounded and speechless, even ashamed.
The next point that this website made is that there is a certain pecking order among those with disabilities. An author of one article referred to it as the "crip caste." The worse your disability, the higher you are in the caste system. This not only exists within the disabled community, but in society in general. If you're in a wheelchair, you're obviously worse off and therefore deserve more "honor" than those who appear to be less affected. Disabled individuals are criticized for being on disability if they're not in a wheelchair or don't have an obvious disability. I overheard two women at work talking about that one day. They were talking about a young man who was on disability and working part time. I didn't catch why this person was on disability. One of my coworkers said to the other, "He shouldn't be on disability. He's a young person. Save the disability benefits for the older people who have contributed to society and worked hard to put money into the system." The other replied, "I agree. And I don't think he really needs it anyway. He should just get a full time job and work like the rest of us." I was angry at this conversation, and incredibly hurt. If they knew they were in the room with someone who was young, disabled, and struggled to work, they might not speak so candidly about the topic. I debated whether I should stand up for this anonymous young person and enlighten these women as to what the situation is really like. But, instead, I just walked away. For the rest of the day, I viewed my coworkers differently. I felt alone, hurt, and looked down upon. It further reinforced my desire to keep my MG hidden. I'd rather people not have the opportunity to judge me.
I'm a happy person at work. I have a coworker that calls me "Smiley" since every time he sees me, I'm smiling. He said to me one day, "Man, you are just a happy woman!" I've had numerous customers in my checklane comment on my smile, my upbeat attitude, and my bright disposition. And don't get me wrong, I am a happy, bubbly person. But people don't see that I'm constantly struggling, constantly in doubt, and becoming depressed about it all.
My challenge for you, those who read to the end of this entry, is to consider these invisible disabilities in your encounters with others. The people on my friends list are all kind, caring people, but it's always something to think about. You never know when your kindness might welcome and touch someone who's feeling ostracized and alone.
I came across a website last night while looking for online MG support groups (since Iowa doesn't have any that meet in person). It was a website about "invisible disabilities." The tag line for the link was "But you look so good!" I was intrigued, having had that line said to me numerous times. I investigated the website and was surprised at what I found.
There are certain disabilities that are considered "invisible" such as deafness, chronic pain, chronic fatigue, etc. These are disabilities that you cannot "see" in everyday life. The website discussed the frustration and hurt of those with invisible disabilities and the incorrect viewpoints of others. People often view people with these disabilities as lazy, faking it, or simply making it up. There is a certain amount of disdain for those with invisible disabilities because it doesn't seem like there's anything wrong with them, therefore it can't be that bad.
I was able to apply this information to my own life. Myasthenia Gravis is one of those invisible disabilities. No one could look at me from the outside and say "Oh, she must have MG." I'm not in a wheelchair, nor do I use assistive devices like a walking stick or leg braces. The only physical symbol of my disability is the medical alert bracelet I wear. I get frustrated with people who don't understand or choose not to acknowledge that I need accommodations. Coworkers still assume that because I'm a young person, I shouldn't need to take frequent breaks, and I shouldn't call in sick when they know full well what I'm dealing with. Complete strangers GLARE at me for using my handicapped permit when I'm exhausted. People who look like nice people from the outside feel the need to nonverbally give me their opinion on my physical status. I've often been tempted to confront the glaring individual and say, "I'm sorry, did I ask for your assessment of this situation? Did I ask you to comment on whether or not you THINK I need this parking permit?" Many of those people would be dumbfounded and speechless, even ashamed.
The next point that this website made is that there is a certain pecking order among those with disabilities. An author of one article referred to it as the "crip caste." The worse your disability, the higher you are in the caste system. This not only exists within the disabled community, but in society in general. If you're in a wheelchair, you're obviously worse off and therefore deserve more "honor" than those who appear to be less affected. Disabled individuals are criticized for being on disability if they're not in a wheelchair or don't have an obvious disability. I overheard two women at work talking about that one day. They were talking about a young man who was on disability and working part time. I didn't catch why this person was on disability. One of my coworkers said to the other, "He shouldn't be on disability. He's a young person. Save the disability benefits for the older people who have contributed to society and worked hard to put money into the system." The other replied, "I agree. And I don't think he really needs it anyway. He should just get a full time job and work like the rest of us." I was angry at this conversation, and incredibly hurt. If they knew they were in the room with someone who was young, disabled, and struggled to work, they might not speak so candidly about the topic. I debated whether I should stand up for this anonymous young person and enlighten these women as to what the situation is really like. But, instead, I just walked away. For the rest of the day, I viewed my coworkers differently. I felt alone, hurt, and looked down upon. It further reinforced my desire to keep my MG hidden. I'd rather people not have the opportunity to judge me.
I'm a happy person at work. I have a coworker that calls me "Smiley" since every time he sees me, I'm smiling. He said to me one day, "Man, you are just a happy woman!" I've had numerous customers in my checklane comment on my smile, my upbeat attitude, and my bright disposition. And don't get me wrong, I am a happy, bubbly person. But people don't see that I'm constantly struggling, constantly in doubt, and becoming depressed about it all.
My challenge for you, those who read to the end of this entry, is to consider these invisible disabilities in your encounters with others. The people on my friends list are all kind, caring people, but it's always something to think about. You never know when your kindness might welcome and touch someone who's feeling ostracized and alone.