Sensationalizing Disability and Difference

The Woman with Giant Legs, The 600 lb Virgin. Why are so many documentary titles written as promotions for modern day circus freak shows? So much for dignity.

It could be that these titles represent narratives from the people who bully/are ignorant/hateful. In this case, the titles would be written to highlight the insensitivity and ignorance. People tend to describe others by what makes them visibly different from other people. This is especially true of people with disabilities. I have often heard of people I've known with disabilities described as "the guy in the wheelchair," or "the girl with no arms and legs."

 When I watch documentaries with these kinds of titles, I don't feel that I'm watching a freak show. They usually depict the person as more than a disability or difference and highlight issues of accessibility, stigma, etc. These titles are an obvious shock tactic. What do you think is the purpose of the shock tactic? To quote the ignorant or to reinforce attitudes about those who are different?


The woman with the Giant Legs... by kterrl

I leave you with a quote by the title character, John Merrick, from The Elephant Man, "I am not an animal. I am a human being. I am a man."

Lucky

If I'm not chronically ill, then what am I?

I've been describing the debilitating symptoms I have been having for over five months as "harmless" and telling people that I am "healthy, but I just feel like crap." Now I'm questioning these descriptions which I have used to demean my experience.

In one of my Health and Society classes, I was taught that "health" involves more than physical wellness. If I don't feel well, then in the eyes of my professor, I am not healthy. It seems silly to me, in retrospect, to think that I have considered myself "healthy". How can I be healthy? Chronically feeling awful has hurt me emotionally. I'm not a happy person. Also, I can't be productive, so I have too much time to think. I am constantly bored and lonely, but I don't feel up to do anything about it.

I think my doctors would disagree with this professor's definition of health. For my whole life, I've been told that I'm lucky: I was born with two neurological conditions called Dandy Walker syndrome and hydrocephalus, but the tube in my brain unusually has never broken or become infected. This makes me "lucky," even though my balance problems have made all athletic activities difficult and humiliating, as well as learning things like math and following auditory instructions. My thin medical chart at Sick Kids musn't have mentioned anything about the hardships I endured because nurses and doctors were always happy and surprised at my regular check-ups. Because my life wasn't threatened, I guess sympathy for my other issues wasn't necessary.

I have a cardiac arrhythmia called Inappropriate Sinus Tachycardia, which basically means my heart is naturally fast. My heart is structurally perfect, though, and it's not an irregular rhythm. Oh, and my medications work well enough to give me a normal average heart rate. So my heart racing spells are just anxiety and depression, right? Well, this is what my cardiologist insists, so it MUST be true. Why wouldn't it be? He sees me in his office for a whole five minutes at a time and runs some heart tests, so naturally he is fully acquainted with my mental state. Yes, I'm "lucky," even though I am still symptomatic and I've exhausted my medication options. My next option would be surgery.

I also have severe environmental allergies for which I have been taking allergy injections for five years. These allergies have triggered my asthma, given me hives and sinus problems at various points in my life. I have fused spinal discs in my neck and a curvature in that same area, both of which give me pain and severe tension. My feet are flat and this hurts me too. I have a long history of severe sensitivities to drugs -- at least that's what I assume the vomiting and weakness have resulted from. And one of my eyes is lazy or something -- I forget. It only became a problem when I got sick several months ago. Now the opthamologist says my eyes tend not to work together properly. Or something like that. Even he said my eyes work the same way they would if I was drunk. I told him my prism lenses help me with this, but still, he says they are "a crutch" and I shouldn't use them unless I'm really tired. So, I must choose to feel drunk simply because I don't "need" glasses?

I think I've decided to share all of this in blog because I am sick of being humble. I am that way because doctors have been training me to think that I'm lucky and in turn, I have felt guilty for being sad about my issues, or feeling like I've had a difficult life. I've been sick for over five months with post viral symptoms like balance and vision problems, abdominal and leg pain, leg weakness, nausea, light headedness, etc. and it is only now that I've thrown my hands up and said, "I can't do this anymore." I've tried saying it before, but I couldn't because I had watched SickKids commercials with children in the hospital for a year. So when I felt myself starting to say "I can't do this" I would tell myself to "buck up." I felt that by allowing myself to grieve over the loss of my quality of life, I was being selfish and cowardly. I didn't want to become weak mentally, especially after priding myself for being so strong and enduring more medical experiences than the average person my age.

Now I see that my chronic humility has been making me weak, mentally. I find it so hard to look someone in the eye and say, "I'm having a hard time." I just want people to see the happy, optimistic Ashley. I tell people I'm sick, of course, but I always feel guilty for complaining. I feel like such a broken record. There is nothing new in my life and usually feeling crappy is the first thing on my mind when someone asks me "how are you?"

I'm also sad because I've missed out on so much since I got sick. I graduated after five years of university and couldn't celebrate; I've missed many birthday parties, including my own, and I can't work. I wanted to gain money and experience for Centennial college in January, where I will study Corporate Communications and Public Relations. Instead, I will have to "Pause," as my favourite Emily Carr had to a couple of times in her life. She has inspired me to use this "Pause" to reflect on my humility, my relationships and my future career. I've been writing a lot in my diary, but it's time to make everything public. Other people deserve to know what it's like to be "lucky."