Thursday, April 25, 2013

Freaks, Redux

Back in the day, people were so squicked out by disability that governments felt compelled to make ordinances preventing citizens who had disabilities from being in public places. They were called "ugly laws," not referring to the laws themselves, but to the state of appearance which they were intended to curtail:

"No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."
- Chicago Municipal Code, sec. 36034, repealed 1974 

I've written about the freak label before and at that time, it was in connection to a story about how a BBC children's show host with a disability prompted a number of formal complaints from the public. Today's post is a bit different. It's prompted by a complaint from a disabled member of the public against CNN.

The story in a nutshell: CNN posted a photo gallery "showcasing disfigured children and stillborn babies affected by Agent Orange in Vietnam," as they say. ('showcasing"??) This came with a warning:

"Warning: the following photographs contain graphic content of severely deformed children. Viewer discretion is advised." 

This made Penny Loker of Waterloo, Ontario angry. Born with — in her words — "a facial difference," she thought that warning people that they were about to see someone with a disability and it might be icky was wrong. (As you may be able to tell, I agree wholeheartedly with her). She e-mailed CNN and they changed the warning. It now reads:

"The following photos depict the devastating effects on humans believed to be caused by Agent Orange. Please be aware that the story of these innocent children contains images that some may find unsettling."

Really, CNN? This is the exact same thing, just using nicer language!

We may not have Ugly Laws anymore, but have we really progressed that far? Now we have warnings that people are about to see a human being who does not conform to the image of perfection and therefore might be "unsettling." Wouldn’t it be nice — even mature and reasonable — if CNN had issued a statement that went something like this:

“CNN believes that placing a warning on photos of children – or indeed anyone – who lives with a disability is misplaced and sends the wrong message. We recognize that people come in all shapes, sizes and levels of ability. To assume that seeing someone with a disability could be offensive or distressing is, in fact, offensive. We are therefore discontinuing the practice of placing warnings on content related to disability with immediate effect."

They didn't, though.

CNN did step up in terms of bringing attention to the story and in inviting Penny to host a CNN chat. However, as I'm already not completely embracing their response, I'd like to point out an additional moment of "WTF?" Because CNN went on to perpetuate the offense when they wrote their story about Penny. Compare this story on the Canadian CTV with the CNN story. Only halfway through the CTV’s video of the story — and towards the end of the written story — is there a mention of Penny never having had a boyfriend; instead, they focus on her interests, her being bright, funny, and gainfully employed and oh yes, the story itself. CNN, on the other hand, commits the first four paragraphs of their story to her romantic status. Because this is, apparently, the most important measure of a woman's normalcy? But that's a post for another day…

You get used to being a freak. To being someone who gets stared at when you're out in public. You may even get to a point where you understand, in a way. Humans are hardwired to notice differences, it's part of how we interact with the world. Noticing the difference is not offensive. What is offensive is when that difference gets labeled as something negative, disgusting, distressing or unsettling. In this day and age, working to remove unnecessary emotional labeling is something that media should aspire to. Not perpetuating the stereotype.

Thank you, Penny, for calling CNN on their crap. I'm sorry they didn't completely get it, but I hope your story will go a long way to others challenging their own preconceived ideas.

Tuesday, April 23, 2013

Real RA: The Benefit of RA Hands

Photo by David Govoni

Sometimes, RA doesn’t just take. Sometimes, RA gives.

When I still lived with my parents, I was in charge of pies. I'd found the perfect recipe for the crust and loved experimenting with different fillings. Our kitchen wasn't very wheelchair accessible, so my mother would place the ingredients and tools on the dining room table and I'd get to work. I love the feel of flour between my fingers — the cool softness of it, the way it packs into smooth shapes that fall apart with the slightest touch. After adding slices of butter, I'd mix it into the flour with a pastry cutter until it was a pile of pea-sized pellets and then get my hands in the bowl to smush them together into a ball of dough. You know the rest: rolling the dough into a large circle, carefully adding it to the pie pan, fluting the edges and adding the filling. Shortly thereafter, the delicious smell of baking pie would waft through the house.

I grew up in a baking household. For as long as I can remember, my mother’s baked goods were a regular part of our diet. When I was little, I helped — possibly "helped," it may have gone faster without my assistance! I loved when she made bread, It was my job to crumble the yeast into the warm milk, stirring until it was dissolved. Then I stepped back and watched while my mother incorporated the flour and kneaded the dough, leaning the heels of her hands into it. This part, I couldn't do. Juvenile arthritis in hands makes it impossible to work the dough as hard as it needs to come together and become bread.

When we moved to Canada, my mother continued making bread and also tried her hand at that uniquely North American treat called pies. Oddly enough, this master of baking couldn't make a good pie crust. We went without pies for many years and then one day, I had a hankering for pie and while she was busy cutting up apples, I made the dough. It was the best pie crust we'd ever tasted. And from that moment on, I was the designated pie maker.

It wasn't until years later that I realized why I could make pie crust and my mother couldn't. It was during a conversation with a friend, who blithely proclaimed that "people can either make pies or bread." She, too, was in the category of not being able to make a decent piecrust to save her life. All of a sudden, the pieces clicked into place and I realized why.

Bread needs kneading. A lot of kneading. To be a good bread-maker, you need strength in your arms from the shoulder all the way down to the hands. Pie crust, on the other hand, needs a gentle touch. Almost every piecrust recipe warns you against handling the dough too much — if you do, the finished crust won't be light and flaky.

In other words: RA hands are perfect for making piecrust. Pain and lack of mobility work together to give you the gentleness this kind of dough needs. Once the pea-sized pellets have been gathered into a ball, you're done. Any more manipulation of the dough will ruin the crust. That means you get to stop before your hands hurt!

The ability to make the perfect piecrust isn't the only gift RA gives. Look around you in the inflammatory arthritis community and you will see support, advice and friendship. Together, we are creating positive change, each one of us gathering with others to make a whole. Like the pea-size pellets make the perfect dough when handled gently, all of us give to each other and work gently together to make something better.

This is crossposted from the CreakyJoints website.

Friday, April 19, 2013

Seating Arrangements

Last Friday, I went to a Toronto concert hall to hear David Sedaris read from his new book Let's Explore Diabetes with Owls — a book that apparently has nothing to do with diabetes, although owls do make a rather hilarious appearance. I had no idea what to expect. In fact, on some level I confused David Sedaris with Dan Savage – they are funny gay men who write and have the same initials. Natural mistake. A-hem. I have a couple of books written by the former, but haven't read them yet. That's going to change very soon. David Sedaris is my new favorite writer. When he read the essay linked to above, I discovered that in one respect, I'm very much like this very funny man. Because I spent a significant part of the past week trying to find out how to contact him so I can ask how much the pygmy cost. It's wrong, I know it is, but I still need to know. How is David Sedaris not on Twitter?

Anyway! This post is not about that. This post is about something else entirely.

Going to concerts and other events have the potential for a number of surprises. Some, such as the entertainment level of the performance, are general and apply to everyone in the audience. Others are unique to a few, namely the wheelchair seating.

As I may have mentioned once or twice on this blog, attitudes towards accessibility vary. Some resist progress to the bitter end, others only grudgingly adhere to standards and guidelines, yet others have a somewhat "creative" interpretation. And then there are the places that fully embrace people with disabilities as valued customers.

You can pick any number of situations to illustrate this point and I'll start with wheelchair seating. There are places that relegate those of us who use mobility aids to a particular area, congregating all the wheelchairs and scooters in one place, usually with fencing. Occasionally, I've felt like cattle. Places that choose this approach to wheelchair seating also tend to place it in one particular location, usually the cheaper seats a.k.a. nosebleed section. Because God forbid you'd give the disabled choices.

Other venues understand that wheelchair seating should be integrated among regular seats and in different locations (and price ranges) throughout the hall. The new Four Seasons Centre is wonderful for this. Unfortunately, tickets to see the Canadian Opera Company are entirely too dear for me these days. Didn't used to be quite so expensive, but I guess you have to pay for that beautiful new Four Seasons Centre somehow…

Last Friday, we went to the Sony Centre and they get it. Seats are integrated, in different areas/price ranges and when you have a wheelchair, an usher will very helpful. They'll insists on accompanying you from the entrance to your seat. And then introduce you to another usher in that section — last Friday, the owner of a magnificent beard — who will be happy to help you in any way you’d desire.

And that's another way you can tell how dedicated a particular venue is to being inclusive: the customer service. The best place I've ever been was Disneyland and that was 20 years ago. My sister and I went to Long Beach to visit a friend of mine for 10 days and had a blast. Naturally, we visited Disneyland and it was phenomenal. Many of the rides were doable by wheelchair (or fairly easy to use if you could get out of your chair) and every time we lined up, a friendly staff person would swoop down and get us right in via a side entrance. Leaving the very long lines to keep waiting. By the time we were ready to leave about four hours after we'd arrived, my friend was agog, mentioning that he'd never done Disneyland in less than a day.

I call it using and abusing the cripple factor.

Most of the time, the world is marvelously obtuse in designing everything for people who are very able-bodied. The odd time having a disability is actually an advantage, I'm gonna enjoy it!

Thursday, April 18, 2013

Functional MRIs: Making Pain Visible

This week on HealthCentral, I wrote about some very interesting studies of what happens in the brain when you're in pain:

"Have you ever felt that your doctor underestimated your pain? Have you ever felt that others didn't believe you have pain? Have you ever wished you could prove that you're in pain? An exciting new development has wide-ranging implications for the assessment and treatment of pain.

Studies of Pain Using fMRI
Researchers are using functional magnetic resonance imaging (fMRI) to study what happens in the brain when people experience pain. Functional MRIs provide a sort of 3-D movie of the brain as it response to pain."

You can read the rest here 

Saturday, April 13, 2013

A Virtual Visit and an E-Book Giveaway

When Marianna and I talked about me stopping by her blog A Rheumful of Tips, she suggested doing something a bit different. We batted some ideas back and forth and settled on a video. Of me. 

There's a reason I'm a photographer, not a model. Well, aside from not having the ability to subsist on lettuce leaves and water. I'm not comfortable in front of the camera, but thanks to Marianna, I got to challenge myself and learn lots in the process.

Hop on over to A Rheumful of Tips to watch the results. Also: enter to win a copy of Your Life with Rheumatoid Arthritis in the giveaway!

Wednesday, April 10, 2013

On Living Well with a Chronic Illness

I am beyond thrilled to tell you that I've joined CreakyJoints as a regular blogger. They're a terrific organization and do important work for the inflammatory arthritis community - I've been a faithful reader of their posts for years and am pretty chuffed to be part of the group now.

My first post for them is about the origin of my perspective on living well with chronic illness. More specifically, two moments from my past that have shaped who I am and how I think about living with RA. The sources of inspiration: my parents and a psychic:

"I had a great time writing a guest post for CreakyJoints a couple of weeks ago and was thrilled when they asked if I wanted to become part of the team. After years of reading the great posts published on the site, of course I wanted to be part of the team! My little corner will be called Lene’s Seated View. Like the title suggests, my thoughts on living well with a chronic illness will occasionally be of a slightly philosophical bent.

So, what am I on about with this talk of living well with a chronic illness? I come at this issue from the perspective of someone who's lived with rheumatoid arthritis (RA) since I was four years old, giving me over 40 years of experience with the disease. Medications for RA that actually work are relatively recent and for most of my life, treatment consisted of painkillers. It was a big moment the day they handed me Orudis, an NSAID, which helped control the pain better than anything I'd tried before."

The rest of the post is here.

Monday, April 08, 2013

Easter Tinks

Things went a little nutty last week and the blog suffered. Again. Sorry, blog. Better late than never?

Last weekend, the Tinks came to visit and we all went out for lunch to celebrate the long weekend and two birthday goddesses: my mother and my sister.

First, as is traditional, The Boy was covered in Tinks in 1.2 nanoseconds.

We thought this more appropriate for Palm Sunday, actually

Muffin was shocked

Morgan's getting a lot of joy out of her camera

while Liam had an intense discussion with my sister about life, the universe and everything

Then off we went to a local pub for lunch. You can tell Spring is here by the patio preparations. Which naturally meant a petting zoo for children (here impersonating chickens)

At lunch, Liam and Scott got into a staring contest. 

Photo by Janne/TinkMama
While I was fascinated by the biggest French fry I've ever seen

Liam and Morgan "borrowed" Scott's phone to play Angry Birds

 Back at my mother's, the kids showed off their twin-ness

Yup. They're related alright.

Words.... must... read... words...

My mother and Morgan doing their favourite thing to do with each other


Thursday, April 04, 2013

Help Me Make a Paperback

You may have noticed I've been a bit scattershot in my approach to posting lately, but I have a good reason. Several good reasons. There's been a rather a lot of work, a lot of book promotion and just recently we dove into making the paperback.

This means reading the damn book again. Not that I don't like my book — I am quite proud of my baby and when caught unawares will admit to thinking it's pretty good. The reason I am saying bad words in connection to the book is that I have read the damn thing (oops, there it was again) at least nine times since November and thought I wouldn't have to do it again until putting together the second edition a couple of years from now.

Nope. I wanted a paperback. Which is a good idea, because a lot of people have told me they want a "book book," something they can hold in their hands, lend to their friends and family and so on. And to be honest, I want a book book, as well. I'm thrilled to see Your Life with Rheumatoid Arthritis listed on Your Life with Rheumatoid Arthritis, Kobo Books and the other places where it's being sold, but I still need to hold it in my hands.

So. I have to read it to make sure that the format changes when going from e-book to book book look nice and catch any remaining typos and errors. Because I have read the book so many times, I may not notice things that need correcting – I know what it's supposed to say and so, my brain supplies that instead of what it actually says. My brilliant copy editor are (thanks to Laurie for catching this Dragonism) caught 99.9% of my errors, but certain things were changed in formatting the manuscript for e-book and… Well. There were a few opportunities for errors to slip in.

And this is where you come in. Readers are the best copy editors. They haven't seen the text before and are therefore much more likely to catch a misspelling or an extra space. Would you please help me make the paperback better?

If you bought the book and have read it, did you notice any typos, misspellings, errors, extra spaces or anything else that needs fixing? If you did, please leave a comment on this post and let me know what it was.

PS we did catch the missing P in Suppress in chapter 4!