Whose body it is, anyway?

I had a little run-in at work around their policy for evacuations.

I tried (and failed) to explain to them that while in a REAL emergency I would get myself down the stairs (five floors) and out to the assembly area without assistance, I didn’t see the point of risking permanent injury to my knee for a drill.

Drill vs. real. Is that so complicated?

Oh. My. Gosh.

The gnashing of teeth, the finger-pointing, the invasive orders. Sheesh.

I was told that not only must I now carry an evacuation sheet folded up in my badge holder AT ALL TIMES, but I must also persuade TWO of my co-workers to agree to be my emergency assistants and that they must come find me – even during a drill – and one of them must STAY WITH ME while the other takes my magic evacuation sheet down to the emergency coordinator who will send fire-men to evacuate me.

However, they won’t send the firemen to evacuate me during a drill because – hello? – it’s a drill. And I won’t cooperate with any of this nonsense during a REAL evacuation; I’ll wait until the fit people are down the stairs (we’re the top floor) and I’ll hobble my own self down the stairs. I will NOT risk anyone else’s life during a real emergency just because I have a tricky knee.

What? They can play-act during a drill, but I have to act like it’s all real during the same drill? WTW?

I was so humiliated. I felt like they were painting a scarlet D (for disabled) on my forehead and yanking away 100% of my medical privacy and autonomy as a free adult. Don’t I get to decide whether or not I want to blow out my knee? Must I be punished for wanting to live a reality-based life, one that differentiates between a real emergency and a drill?

All this kerfluffle happened within view and hearing of my co-workers. It’s been a long time since I’ve been that humiliated.

Now I have a better understanding of why my mother gets so frustrated when one of her many offspring tries to do something “for” her. She’ll snap, “If I want your help I will ASK for it.” Of course every adult wants to be independent, self-sufficient and able to care for themselves for as long as possible – no one wants to be told, “You can’t take care of yourself anymore.”

I felt like my boss was saying, “You have a damaged knee, so you don’t get to think for yourself anymore – we get to take away all your autonomy and humiliate you at will.”

I swear I almost quit today. I wanted to just look her in the eye and say, “No. This is MY BODY.” and walk the heck out.

This isn’t directly about diabetes, but it spoke to me (!!!) about how people try to tell us what to diet to follow, when to eat, how to use insulin, when to exercise, not to eat sugar when we’re hypo, etc. etc. etc. Why is it so hard for people to respect our autonomy and privacy when we have an illness or condition?

You don’t want to get me started on the taking away my autonomy part! I use a walker and can’t drive so my mother takes me to the grocery store. She goes to the far end to start putting my bags in the cart while I run my debit card thru their little machine. About 90% of the time, the clerk will turn and try to hand the receipt to my mother like I am not capable of handling it – they saw me run my card thru you would think I can handle a receipt. Sometimes I wonder if they think I am contagious.

When I was doing HBO, I stayed at a senior apartment building owned by the hospital. The doctor had to sign off on me being able to stay there. One of the questions was if I could make it down the stairs in case of an emergency. The nurse filling it out asked if I would be able to scoot down on my butt & I said yes. A couple days after I moved in, someone from the management at the apartment knocked on my door and asked me to get out of my apartment early the next day because they were having a fire drill – I was sworn to secrecy about it. I was still in a wheelchair then.

It sounds like you’ve had a time of it, Kelly.

I’ll never understand people. Never.

How utterly humiliating! Don’t know being put in this position if I’d be screaming or crying. Probably both. Tears streaming from anger & frustration.

How they could expect you to put yourself at risk for a drill is absurd. No room for understanding. The rules must be followed. Not!

Sorry. That stinks.



At my building, 5 floors and somewhere between 500 and 600 people, they tell my supervisor, who is in a wheelchair, about the drill before it happens so he can go down the elevator and get out of the building first. He has two guys set up to carry him out, with two back ups, just in case one or more of them aren’t there.

I use a white cane due to my visual impairment.

People don’t believe it when I tell them that on an almost daily basis, total strangers will run up to me and physically grab my arm and yank me away from stairs, or grab my arm and try to “guide” me without asking if I need help or where I’m going. Every sighted person I tell is shocked that people would make physical contact with me without asking, but for people with visual impairments it’s, sadly, pretty routine because people assume that blindness equals helplessness. (The proper way to do it is ask if I need help and then, if I say yes, let me take their arm. I never object to people asking if I need help as long as they respect whatever answer I give them, which more often than not is, “No, but thanks for asking.”)

I can understand why your employer might want proof that you can get out of a building safely (or else make their “own arrangements”) due to legal concerns. But still, they should be asking what works for you, not just deciding for themselves what’s best. And, at the very least, should be doing all this in an office and not out where other employees can hear the whole discussion.

I can understand the concerns. Drills are a legal requirement and have to be seen to have been fully complied with.

I know that it is frustrating but in the long run it is worth doing.

I can well understand the diabetes bit though - I often get asked “should you be eating that?” or if told that I should take insulin during a hypo, or that if I did things properly these things would be cured! And this from people who do not know anything, or know someone who had it many years ago etc. But people are generally well meaning - just ignorant.

Awesome article. Thanks for sharing.

I will never understand people either Jean!

LOL – Alan, I like the way you think!!!

Slugging didn’t occur to me, but right now I’m thinking about making them climb down from the 25th floor of the Royal Bank Centre building – on their knees! ;0)

Maybe being an otherwise free, independent and self-supporting adult who just happens to have a bum knee (all those stairs!!!) would help them latch on to a clue.

Thanks so much for that. I did feel a bit like an adolescent yesterday, wanting to yell: “You’re not the boss of me!”

But of course, she is the boss of me, the bossy witch. LOL

I hope I never use that demeaning voice on anyone. Gah.

Jen, I’m speechless with horror at the thought of people just grabbing your arm and trying to propel you around like a marionette. Yikes!!!

Unfortunately, I have no trouble believing how awful people can be to the disabled. I distinctly remember boarding a bus once with a cast on my foot and crutches, and a strong, healthy young cur of about 15 refusing to give up his front seat in the area clearly labeled as being reserved for the disabled, because “how do I know you’re really disabled”. I remember thinking, “WHAT? You think I slap on a cast every morning and grab the crutches just for my commute?”

Or there was the time when I was told I could only drink full-sugar soda or beer from the concession stand, but not my own bottle of water, and explaining that I’m diabetic and I don’t want or need soda or beer right now, just plain water (hello? thirsty? not enough insulin on board?) fell on stupid ears…

Whether it’s oppressively trying to take over “for” us or oppressively refusing to cooperate when we NEED and are politely asking for consideration, far too many people get it hopelessly wrong when interacting with people who have special needs or circumstances.

I spent about a half-hour in the ladies afterwards, doing just that: crying big, hot tears of humiliated frustration.

Creeps.

Earlier this year I was off my feet for 6 months (Charcot foot) and in a wheelchair or on crutches. I kept the wheelchair at work because it is handicap-accessible and my house is not. It did not affect my work whatsoever - what’s the difference between sitting in an office chair or a wheelchair? But the Human Services Department had to do an investigation anyway, to determine what changes might need to occur. Our office was on the ground floor, no steps anywhere. I told them I could move faster in that wheelchair than 60% of the overweight or elderly people who also worked in the office, and if needed I’d be happy to transport anyone who needed it on my lap. I had been working for over a month in the wheelchair before the investigation and they still made me go back to the doctor and bring a letter saying it would be okay. Like I was too stupid to know. The really dumb thing is that work was the best place for me to be. I live on a farm. At home I had to hobble around on crutches feeding animals and doing the chores.

When did we become creatures driven by rules, rather than by common sense?

It’s maddening what a wee bit of power will do to someone wielding a rule book. Sheesh.