November 1st - For Better and For Worse

November 1st. It's always an important day in my world.

It's the day when all the Hallowe'en candy is marked down and I join the other sale-happy shoppers at 7:30am at Wal-Mart. I stock up on perfectly sized bags of emergency carbs that come in the form of sour patch kids and sour cherries.

It's also, ironically, my diabetes anniversary. (And no, I didn't get diabetes from eating too much candy thank you very much) Today marks my 11th year living with the big D and, as always, I'm surprised at how much time has passed, slightly annoyed when I think of all the time, energy and money that this crazy disease takes up, and eternally grateful for all the things that it has helped me to do. All the people I have met. All the changes I have made in my life. All the adventures.

Today is a bittersweet kinda day where I let myself feel sad for just a little bit and then do my best to celebrate the fact that I'm still here, still strong, still healthy, and still fighting the good fight.

November 1st, 2013 is an even bigger day than usual. Two more things are happening today to help make my day all that much brighter.

First of all - guess what starts tonight?

That's right folks. Another curling season is about to begin. 

Even more exciting that dusting off my broom and curling shoes is that today is the day that an article I wrote is being released - internationally. You may remember a few months back that Dave Hingsburger over at Rolling Around in my Head asked me to write an article about how to support someone with a developmental disability who has diabetes. Well, today is the day that the article arrives in inboxes around the world. It's exciting to think that perhaps, because of what I've written, someone takes the time to ask the right questions and say the right things. It's exciting to think that a few more people will offer support instead of judgement. That they will take the time to check out the DOC and help people connect with others who truly get it. It's exciting to think I might make a difference. 

I can't put the article up on my blog yet but will be able to in a few weeks. Thank you to everyone who sent me suggestions of things to include. 

So yes, today is a big day in my world. And yet, as is often the case, I celebrate it in a small way. With at early morning swim because I can. With friends at the curling rink. Laughing over snacks and drinks. Curled up in bed with the man I love. Grateful, as always, to have been given another year. 

Reaching Out

Yesterday was a very interesting diabetes day.

I started writing my blog pretty innocently back in January 2011. I had no secret ambitions. No plans for world domination. I just wanted to reach out a little bit and see if anyone reached back.

They did and I have made some pretty amazing friends and learned a lot of diabetes tips and tricks. I also like to think that I may have helped a few people along the way...and perhaps helped dispel a few diabetes myths.

Yesterday, I was asked to write an article for a newsletter that is distributed pretty widely in my field. It's a newsletter aimed at direct support workers who support people who have a developmental disability.

I was asked to write an article about supporting people who have diabetes.

I am honoured and excited by this challenge and can't wait to flex my writing muscles.

I was still grinning from that new when I arrived home after work to discover a FedEx envelope waiting for me.

From Animas.

With a thank you card and a CD of pictures from the photoshoot we did a few weeks back.

Later this year I will be featured in their Animas newsletter.

Neither of these honours would have happened without diabetes and neither would have happened if I hadn't decided to be open, honest and very public about living life with type 1.

I'm so glad I reached out.

I'm even more glad that people reached back.

Here is a small sample of the photos Animas sent me. It's pretty odd being in front of the camera instead of behind it but I'm happy with the results. 

When it is Better Not to Know?

As some of you know I work with adults who have a developmental disability. I work with them but I also work with families of adults who have a developmental disability. And I work with other agencies who support adults with a developmental disability.

Oh, and I also work with foster children who have a developmental disability. And their foster parents. And their caseworkers. 

Basically, I work with a lot of people. 

I like to think of myself as a realist and I firmly believe that it's usually better to know than not to know something. 

Not always, but usually. 

So what would YOU do if you were meeting with a child (and by child I mean 17 years old) for the first time and they have no idea that they have a disability? I don't know this of course and when I tell him that I work with people who have disabilities, he looks shocked and asks if he has one. 

And then I got to watch his worker awkwardly try to explain without actually saying that he has a disability. 

Afterwards his worker apologized and said that she just couldn't bring herself to tell him the truth. "He's just such a nice kid" she said. 

To which I replied "yes he is, and he has the right to know". 

This is not the first time I've experienced this. I've met several parents who asked me not to tell their adult child that they have a disability. 

Really!?! 

That's kinda like not telling someone they have diabetes. Just telling them that they're lucky because they get to have an injection every time they eat anything. 

Look, I'm the first person to tell you that labels should not define you. Nor should they set limits for you.  

But labels help us understand ourselves and each other sometimes. Hearing the word 'diabetes' was pretty scary and overwhelming but it sure helped me focus on what I needed to do. And it helped me understand how I needed to do it. 

To me, it's just plain wrong to withhold information in order to 'protect' someone. The truth is always the best way to go. 

Non?

Assumptions

I want to introduce you to two young triathletes. They swim, cycle and run triathlons together. Their names are Connor and Cayden Long and they were just named Sports Illustrated's SportsKids of the year.

Take five minutes and watch this video. Trust me.

Their story is not about winning the race. It is about giving something to someone else and finding a way to connect with someone you love. He could have chosen to bring his brother to watch his races from the sidelines. Or he could chose to race together.

This story is also about advocacy. It is pretty impressive how this articulate young man is able to explain how he wants to make a difference and to hear him say that he wants people who don't care to start caring.

At first they reminded me of the amazing Team Hoyt that I had the honour of watching run the last stretch of the Boston marathon in 2011.

Team Hoyt is a father and son team. They are incredible and inspire a lot of people.

But Team Long are two brothers. Young brothers who, at an age when many siblings don't want much to do with each other, decided to do triathlons together. Decided to train together. Decided to sacrifice speed for partnership. Decided to make a difference in each others' lives AND teach people a thing or two about false assumptions.

Watch the video.

And then think about all the assumptions that this five-minute video just challenged...about how kids behave, how families work, what disability means and what it really means to be an athlete.

Fingers Crossed

I headed to the post office the other day with two envelopes to mail.

One was headed to Toronto, one to the East Coast.

Both have to do with diabetes.

The first one is my application for the Disability Tax Credit. It contains a cover letter, a five page summary of what I do every day to keep myself alive and healthy and a 9+ page application signed by my diabetes doctor.

I should hear back in 6 to 8 weeks re whether or not I qualify.

The second envelope contains a request to my insurance company to cover the cost of my continuous glucose monitor (CGM) sensors. There is a two-page letter from me explaining how they work and the importance of having them, an application form and an estimate from my pharmacist of the cost.

I called the insurance company last week to see if they covered the sensors and was told that no, they do not. But I could request a review of that decision and should hear back within a week once they receive the information.

Why am I doing this now?

Because of a conversation I had with a new friend from Israel and a new friend from Norway.

Both use the CGM. All the time. Neither couldn't believe that I didn't.

"I have tried it before" I said "they're just so expensive".

"That is not an excuse" was the reply.

Fair enough.

I understand the value of continuous glucose monitoring. It helps identify patterns to better control your blood sugar but, more importantly, it helps keep us safe. Alarms sound when blood sugar drops below a certain number. In the middle of a run or in the middle of the night.

CGMs have saved people's lives - woken them up from a bad low that they didn't feel.

I know. I get it. I agree.

So I'm starting the fight to have them covered by my insurance. So I too can take better care of myself.

All because of my two new international friends.

Thanks boys!

(Over)commitment

On Wednesday night I was sitting (well more like lounging) on the couch with my laptop.

I did three things in the space of about 15 minutes.

• I responded to an email about some possible research being done re rights and adults who have a developmental disability
• I sent a final shot list and confirmation details to the bride and groom whose wedding Doug and I are photographing this Saturday
• I made the final corrections to Thursday's blog entry for Running on Carbs

Rights, disabilities, diabetes, and photography.

Just a few of the things I love to talk about, write about and include in my everyday life.

Other things I did this week? Swam three times (with my new Masters coach!), hit the road on my bike to practice my rpms, watched the sun rise on my early morning runs, watched the sun set as Doug and I went for an impromptu flight over Niagara, hosted a baby shower, volunteered for Hospice Niagara, went to the theatre and had a massage.

My days and weeks are busy and packed with activities.

Activities that I choose. Activities that make me happy, that make me think and that keep me healthy.

At dinner the other night, Doug and I were talking about what it takes to get to the Olympics. Not that we really know because neither of us have been to the Olympics (despite my best attempt at swimming 200m in under 1 minute - I can't get my time under 3:48). But we can sort of guess how much time and commitment it might take to get to the level that it takes to even qualify for a spot.

And I got a little bothered.

If someone told me that they worked long days, seven days a week. That they gave up almost everything else in their life, that they left their family and friends and that they committed their life to work, I would have a few choice words to say to them. I am a firm believer in and advocate for finding a balance between work and life. Work to live, don't live to work.

And yet, elite athletes essentially do the same thing except instead of attending meetings, making business deals, and writing reports, they commit themselves to their sport...and we idolize them for it. They are heroes. They are so high up on the pedestal that they are unreachable. We watch in awe as they do things at speeds we can't attain or sustain for even a few seconds and with a strength that we will never have.

Please don't misunderstand - I am not criticizing the choices that our elite athletes make. I'm just commenting on how differently the two forms of incredible commitment and dedication are perceived. Tell me someone does nothing but work and I get annoyed. Tell me someone trains seven days a week and I think "wow, I wonder if I could do that".

I will NOT be part of the 2012 summer Olympics despite my very respectable super sprint triathlon time.

I have not yet received my invitation to join Canada's swim team despite the fact that I swim faster than ALL the seniors in the pool.

But that's probably for the best because, in the space of fifteen minutes I can advocate for diabetes, finalize wedding photography details and discuss rights research. I thrive on variety and can't imagine spending most of my time doing one thing.

So I'll watch the Olympics every second I can, I'll cheer on les Canadiens, the underdogs and the heroes. I'll dream of being able to (insert sport here) as fast or as well as they can, even for one day and then I'll go back to my very fun, very active, very fulfilling life.

WHO Says...

What does the word disability mean to you?

I've been thinking a lot about what disability means lately thanks to a few blogs I've written, a few I've read, a few conversations I've had and a comment that was made to me. The comment is what started it all actually.

A person I have not yet met in real life but have been writing to online made a comment to me about my disability. And about my being an advocate for people with physical disabilities.

My first thought was 'wow, that's a really nice thing to hear' and it was quickly followed by a second thought: 'whoa wait a minute, I don't have a disability!'.

Do I?

I have type 1 diabetes which is a chronic disease.

Is it a disability?

I would hazard a guess that the first thing that comes to mind for many people when they think disability is probably a wheelchair. If they think a little harder, they might add blindness or deafness to the list. Perhaps MS? But really, what does the word disability mean?

According to the World Health Organization disability is “any restriction or lack (resulting from any impairment) of ability to perform an activity in the manner or within the range considered normal for a human being”.

I can run a half marathon in two hours and eighteen minutes but I have to stop several times to check my blood sugar and eat carbs or take insulin depending on the number I see on the glucometer. I perform the activity in the range that is considered normal (if by range they mean time) but I don't think my particular way of running a half marathon is in a manner that is considered normal for a human being (which or course then begs the question 'what is normal?' but we'll save that one for another day.) 

On the other hand, when I go swimming, my blood sugars behave so well that I can remove my insulin pump and swim for an hour without my blood sugars going up or down. So I swim in a range and a manner that is considered normal for a human being. 

Am I disabled when I run but not when I swim? 

And really, who cares? Does it matter whether I have a chronic disease and a disability or just a chronic disease? Does my life change somehow if I'm suddenly using the word disability as a way to define myself? 

I would argue that it does. 

I don't pretend to speak for other people who have type 1 diabetes but, because I have type 1 diabetes, I seek out others like me. I encourage others people like me. I share stories and experiences with other people like me. If there was a chronic disease parade - I would march behind the type 1 diabetes banner. 

If I have a disability, then am I not challenged to share my stories and experiences with other people with disabilities? To join the disability pride parade? 

Disability is a pretty big umbrella - just like chronic disease is a pretty big umbrella. I don't pretend to understand what it's like to have lupus or MS or arthritis just because I take insulin every day. I also can't possibly imagine what it's like to be unable to see, walk, hear or feel just because I am unable to make insulin.  

I have no answers to my questions. I just continue to have more questions. But it gets me thinking which raises my awareness which in turn forces me to think outside of my comfort zone. And that, my friends, is what growth is all about. 

The Language of Labels

Last week I drove to a meeting with one of my co-workers. I'm not even sure how the conversation started but we ended up having a fascinating discussion about definitions and terms that are used to label people.

Specifically, we discussed the terms disability, condition, illness, and disease.

I explained to her that I have met a few people with type 1 diabetes who find the word 'condition' to be very offensive. They argue that condition is defined as a state of health. As in, he was in critical condition or she was in prime condition.

So, arguably, we can have type 1 diabetes and still be in pretty darn good condition. Or in really bad condition. But diabetes itself is not a condition.

So I said to her that I don't have a chronic condition, I have a chronic illness.

And she replied "I don't think that's the right word either".

"Chronic disease then?" I asked. "That sounds better" she replied.

Then she launched into an explanation of the term disability and the conversation really became fascinating.

According to what she learned in school, disability is a transient rather than a permanent thing. For example, someone might have a physical impairment that requires them to use a wheelchair to get around. The impairment is permanent - they will always have that impairment. But it doesn't necessarily mean that they always have a disability. If they live in an area where everything is completely accessible to them - then technically they are not disabled because they are able to function the same way everyone else can. But if they live in a area that is full of barriers - that's when they become disabled.

So I asked "if the person lives in a large city with an accessible home and accessible transit, buildings, workplaces, stores etc then they are not disabled but if they move to a small town where they cannot take the bus, get into stores or buildings, then they are disabled?"

"Pretty much" was the answer.

That's fascinating.

"Just like how, if someone with Down Syndrome lives in a small town and they are a fully accepted and active member of that community, then they really don't have a disability. They still have Down Syndrome but they don't have a disability. Take the same person and put them in a larger city where they can't easily integrate into the community, get a job, contribute, access services etc and suddenly they have a disability."

That is SO interesting. I had never thought of disability that way before.

When I got home that evening I looked up the terms illness and disease. According to my research, an illness is a state where a person has feelings of pain or discomfort for no identifiable reason.

Identify the reason (eg. diabetes, cancer etc) and then they have a disease. So I guess, based on that definition, I have a chronic disease. Not an illness and not a condition.

I don't know about you folks but I find language absolutely fascinating. I am amazed how some people are able to weave words into eloquent stories that describe perfectly how they are feeling or what they are thinking. And yet what is often the case is that people can't quite find the correct term to explain how they're feeling or what they're thinking - it can lead to all sorts of frustrations and misunderstandings.

Language can set people free and it can also put people into tiny boxes that limits their ability to do what they want to do. I see that every day and I hate it.

But on a purely intellectual level - it sure is fun to debate and discuss the meaning of things and the nuances that make our language so beautiful and so powerful.

D-Blog Week Day 5 - What They Should Know

What I want other people to know about diabetes?

Before I answer that, I need to take a step back and explain something. I work with people who have developmental disabilities. Actually, I believe the new term on the block is intellectual disabilities. Some of these people also have physical disabilities. Others might have a mental health diagnosis thrown in. Sometimes two just for fun.

Essentially, the people I provide support to have a whole bunch of labels attached to them and with those labels come assumptions, stereotypes, discrimination and a whole bunch of other negatives that affect them before people even learn their names.

It. Sucks.

So I've learned to read their referrals, note their diagnoses and then forget about everything that was written down.

When I meet them, I try really hard to meet the person.

Not their label.

In an ideal world, that's what I would like everyone to do.

Because I'm Céline.

I'm not the diabetic.

And just like how not every person with Down Syndrome fits the Down Syndrome profile, not everyone with diabetes fits the diabetes one. In fact, none of us do.

Don't put people in boxes. Don't make assumptions. Meet the person. Ask tons of questions to understand as much as you can or want to understand. But don't say things like 'Oh, you have (insert diagnosis here) that means you cannot (insert ridiculous assumption here)'.

Pride (rawr!)

On Tuesday, Dave Hingsburger came to St. Catharines to speak about Disability Pride.

I first met Dave around this time last year when he and his partner Joe came to teach us how to teach others about abuse prevention. I wrote about that unforgettable experience here if you're interested.

Dave is a rare soul who challenges everyone he meets to look at the world through other people's eyes. The funny thing about Dave is that, even though his blog is the first thing I read every morning and even though I've had the opportunity to meet him a few times and interact with him over email - he surprises me every time I hear him speak.

When Dave is presenting, he always get there early. In fact, he's usually one of the first people in the room. He sets himself up at a table at the front with his notes and his tea (can't forget the tea!). He sits there quietly as the room fills with people. Sometimes people come up and quietly talk with him but, more often than not, he sits alone. Sometimes he looks up, sometimes he looks down. He always looks quiet and it's honestly hard to believe that he is the presenter. Hard to believe that, in a few more minutes, he's going to move people, anger people, make people laugh, cry and gasp in horror. Hard to believe that he's going to inspire several hundred people to take a look at themselves, at how they treat others and at how they want to be treated. Hard to believe he is, once again, going to challenge everyone to change the world.

Damn it, he surprises me every time.

He moves me every time.

He always makes me want to work harder and refuse to be complacent.

And I know what to expect from the man. I've heard him speak. I've read his stories.

On Tuesday, Dave spoke about disability pride.

He told some moving stories and made some very compelling arguments about how other groups of people have pride. Ever been to the Pride Parade in Toronto? I have, several times. Don't tell me they aren't proud of who they are.

Ever been to a multicultural celebration? I have. Don't tell me they aren't proud of who they are.

Dave argues that people with disabilities should be too. No more whispers of "he has Down Syndrome", no more whispers of "I work with people with disabilities". "ENOUGH!!" he roars. "We need to own this, we need to stand strong together, make change together and fight against hatred, prejudice and bigotry together!"

He's right, of course, and he's leading the movement.

And, once again, he's convinced this girl to join in the parade.

Conversation Café

Last November my friend Kate emailed me. She works at Brock University in Community Learning which is a program that offers learning opportunities for everyone in the community to enjoy. One of the things that they do is organize Conversation Cafés. Conversation Cafés are created to encourage discussion and learning.  They are based on the principle that no one person has all the answers and that the knowledge of the group is much more rich than the knowledge of a single person.  Each Café is held at a local coffee shop and each Café has a different topic to be discussed. The conversation is run by a moderator and a guest with knowledge about the topic is invited to attend. The guest presents an overview of the topic and then participates in the conversation.

Next Tuesday, March 6th, there is a Conversation Café on the following topic:

How can we support the full inclusion of all people, including those with a developmental disability, in our community?

We all want safety, security, happiness and health. We all want the right to choose how we live out our lives. Being recognized as an individual and having the opportunity to make a valuable contribution is important to every person. Often however, people with a developmental disability can feel like they are on the outside of the community, looking in. In this public discussion, we explore how to create a community that welcomes all members.

Since I work with people who have a developmental disability, Kate asked me to review her summary to make sure it made sense. I made a few edits and sent it back with my approval.

She then asked me if I'd be willing to be the guest at the event.

I'm not a big fan of doing presentations and I'm certainly not a big fan of talking in front of a room full of strangers.  But I am a big fan of a good conversation and I am an even bigger fan of doing things that scare me so I agreed.

I just found out that my night is March 6th so I have a week to get my thoughts in order and be ready to talk for ten minutes about what community inclusion really means.  And what a disability label really means.  And what discrimination means.

In order to prepare myself I have been having little imaginary conversations in my head.  I imagine a conversation where people are asking me questions or challenging things I have said. In my head, I say my part first and then I try to think about what someone else might say to me so I can figure out how I might respond. 

Here's how one of these imaginary conversations went.  

Me: "people with developmental disabilities live in the community but they are not always part of the community. For example, if you or I wanted to join a bowling league, we would go to our local bowling alley and sign up.  If someone with a developmental disability wants to join a bowling league, they are told to join the Special Olympics bowling league. "

Other person: "Well, what's wrong with that? Joining Special Olympcis means that they get to be with other people just like them."

Me: "Just because people share the same label of 'disability' doesn't mean that they are all the same and that they are going to be friends with other people with that label.  I have Type 1 diabetes but, if I wanted to join a bowling league, that doesn't mean I'm going to go find a Type 1 diabetic bowling league.  People shouldn't be clumped together because they have the same label.  They should be able to be with people who share similar interests. "

No offense to all the other T1s out there but I just don't think I want to join a bowling league where I have to be with you just because our pancreases don't work.  We are more than our diabetes right?  I'll hang out with people with diabetes when I want to be part of that community. But I won't seek them out when I want to be part of the bowling community.  

Anyway, I've got my rough draft written for my presentation which leaves me with a few days to ruminate on it.  I've already made Doug pretend to be my audience once and I suspect he's going to be hearing it a few more times before the big night.  And if anyone is free next Tuesday night and wants to be part of the conversation - come on out! 

A Day to Remember

Today I met one of my heroes.

He doesn't run, cycle, have diabetes or take amazing photographs (that I know of).

He drinks tea, not coffee.  He likes movies and dogs.  He thinks I look a lot like a girl named Emily.

His name is Dave Hingsburger and he fights for the little guy.

More importantly - he teaches them how to fight for themselves.

Dave teaches people to say no.  Actually, he teaches them to say NO!!  No to abuse.  No to discrimination.  No to people telling them how to feel or act.

Dave and his partner Joe came to our agency today. They came to teach a class on abuse to adults with a developmental disability.  Because people with developmental disabilities are more likely to be abused than any other population.

And the majority of this abuse is done by staff who are supposedly there to support them.

Think about that for a moment and let the horror of it sink in.

So Dave and Joe came to our agency today to teach people that they have a voice.  A right to say no. And a responsibility to speak up so that abuse stops.

Their two hour class was informative, hilarious and empowering.  I was there to learn how to teach the material but my role was to sit quietly, not offer any answers and not help anyone.

Within minutes, Dave had built a sense of trust in the room.  He empowered people to speak up, help their peers, share their feelings and stand up for themselves.  It was extremely moving to watch.  People with whom I work with every day surprised me.  Over and over.  Quiet people found their voice and said no.  People who are easily upset or stressed participated happily in role plays.  People who can't read offered to stand in front of the group and read - with help from a peer.

Today was every bit the day that I hoped it would be.

Dave and Joe were every bit as charming, entertaining, approachable and passionate as I hoped they would be.

The people who took the class were every bit as engaged, respectful and eager to learn as I hoped they might be.

And the staff left the session every bit as inspired as I hoped they would be.

It's nice when you set high standards for everyone and they exceed them by a mile.

Thank you Dave.  Thank you Joe.  You have reminded this girl why she does what she does.  I hope we can carry the torch that has been passed to us with the care and respect it deserves.