Once in a while, the media or a government agency will say something that deeply offends ostomates.

UPDATE from Health Canada (July 23, 2018 @ 4:36pm) : 

Such was the case when Canadian news articles began reporting on the testing of new cigarette warning labels, one of which featured an ostomate.

To say that my private messages and Twitter feed exploded was an understatement, and I’ve had numerous requests to let Health Canada know that I am outraged that they would stigmatize ostomies and offend my community.

A History Involving Ostomates

This isn’t the first time something like this has happened. Several years ago the CDC ran a similar campaign stating the risks of smoking and it features two ostomates (in two separate ads) who were sharing their negative experiences of living with an ostomy as a result of smoking.

A lot of pressure was put on the CDC to have the ads removed or revised, and they did end up modifying the message. In that case, I was in support of the revisions because I felt it put too much negative emphasis on having an ostomy, rather than why they had the ostomy to being in (smoking).

That said, these were patient testimonials, and nobody should have the right to undermine their experiences (I did publically reach out to one of the people featured to see if I could help by offering stoma care tips).

Health Canada’s Proposed Labels

But the new Health Canada warning label is different than the CDC ads and there is no testimonial.

For example:

The proposed labeling is part of an open consultation (including open to the public) to, “get feedback on the proposed measures to standardize the appearance of tobacco packages and certain tobacco products.” according to Health Canada (SOURCE)

Why Put Warnings on Tobacco Products?

Warning labels on tobacco products sold in Canada are nothing new and they can be quite graphic (SOURCE). They’ve been around for decades, and their effectiveness in both raising public education about the dangers of smoking and their ability to influence people to quit has been studied for decades as well.

Some studies show that these warnings cause smokers to think of risks and can encourage them to stop (SOURCE, SOURCE, SOURCE), even across dozens of countries who use similar labeling strategies (SOURCE).

These new mock-up labels have also been tested in focus groups, and their impact on teens showed that they offer education and pause to think – especially when the message is to the point and realistic (i.e. like the ostomy one).

As the Toronto Star reported, “Youth participants, aged 15 to 19, noted learning new information in the focus groups, like the fact colorectal cancer could result in reliance on a colostomy bag.”. (SOURCE)

To me, this seems like a great idea that the public (and ostomates) should be supporting.

So Why the Outrage?

If these labels are meant to educate, and they’ve been shown to be effective at getting people to quit smoking, why all the outrage over the ostomy bag?

That was my first thought when I started getting tweets and private messages about it.

Surely, if so many people were upset there must be a good reason – right?

But as I looked at the specific warning label in question, I found nothing to be offended by.

Nothing I felt was stigmatizing to ostomates. Nothing that made me feel bad about living with an ostomy. Nothing exaggerated or made to seem different from what life might look like with an ostomy bag.

It simply shows a person with an ostomy bag – the image is similar to many I’ve seen on social media that get praised and shared around!

I’ve seen comments like these and have scratched my head for the last few days trying to understand why people are so upset:

“This enforces the already terrible stigma there are regarding bags and stomas! So annoying! The wording is very offensive…”

“…it makes a mockery of everything ostomates and advocates are achieving breaking the stigma attached to having a stoma bag. I find the wording insulting as well.”

“It’s the wrong way to promote quitting and offensive to Ostomates”

“This is disgraceful ….. [the] federal government needs to get their facts right about stoma bags before putting them on cigarette packages…”

“Disgraceful and out of order very upsetting for lots of ostomates”

As I read these comments and then look back at the warning label, it’s as though I’m looking at something totally different from what the comments refer to.

The label stated a fact: “Cigarettes cause colorectal cancer”.

It then stated a possible reality of having colorectal cancer: “You may need to use a bag as a toilet for the rest of your life.”

With the message, “You can quit. We can help.” that includes a phone number and website where someone can go to find resources to help them quit.

The image is that of an ostomate with an ostomy bag on their side. This person may or may not be an actual ostomate, but I will note that the ostomy appears to be on the right side of the person, which would indicate an ileostomy, rather than a colostomy.

It gets to the point (smoking causes colon cancer which may result in having an ostomy) without actually attacking ostomates in any way. And unlike with the CDC ads, this one doesn’t show an ostomate struggling or complaining about the smell or difficulties they’re having.

There is no hint that having an ostomy is “worse than death” or that it’s a “worse case scenario”, but it is being shown as something that could happen if you end up with colorectal cancer (which is still true).

Heck, the photo shown looks tame compared what my abdomen looked like after surgery!

If the warning had been misleading or intentionally made it seem like living with an ostomy is terrible, then I would have something to say about that. All of us would.

But I just don’t see it here.

What If You Are Offended by It?

Many people don’t agree with me, and I respect that. But I would like you to consider something if you feel offended by that warning label.

Are we hurt by how other people may perceive our ostomy or are we hurt by how we feel about living with an ostomy?

I think it’s important to ask ourselves why we feel offended by things like this. The label is targeting smokers and using the facts to help inform them.

I repeat: The goal of these labels is to inform people about the risks of smoking and provide them with an incentive to quit – saving lives in the process. It is not about shaming ostomates.

And I get it: We value our ostomy because it likely saved our lives, and it also allowed us to regain a quality of life we never imagined. Nobody is challenging that and the warning label does not elude to what actually living with an ostomy can be like (I don’t believe it ever intended to).

Promoting positivity when living with an ostomy is key to my own advocacy and I’m here to support anyone who has an ostomy. But for those who know me, it also means I don’t sugar coat the realities of life with an ostomy (including having blockages, leaks, and pouch odors).

And while we may see ostomy surgery as a treatment option for illnesses we had no control over; a life-saving option after an accident or emergency; a life-improving option for someone with cancer; we should do what we can to promote the avoidance of disease and surgery influenced by lifestyle choices – like informing smokers of their risks.

If you feel hurt or offended by these warning labels, you can certainly voice your opinion to Health Canada, and I encourage all Canadians to share their thoughts with Health Canada about these newly proposed labels.

But more importantly, I’d like you to think about why a warning label that is stating a fact causes such a negative reaction in you.

Thoughts from Other Ostomy Advocates

Many of my fellow ostomy advocates do not share my opinion (and that’s OK!), but I’m glad they are starting discussions around it.

I am glad to see that not everyone is outraged by these campaigns, including Fight Colorectal Cancer, a US advocacy group that works with many ostomates. They offered a rational and level-headed response to the CDC smoking ads which aired several years ago.

What Can We Do from Here?

Firstly, I encourage you to share your thoughts and feelings about these proposed labels.

We can’t move forward as advocates and patients living with an ostomy if we don’t understand the reasons behind our motivations or rationale.

I will be opening up a thread on the VeganOstomy Community Forums to give people an opportunity to openly discuss this topic. I hope that you’ll join in! You can also leave a comment below.

Secondly, I’d like you to stop and think. Knee-jerk reactions to things like this are often short-sighted and unplanned. Something we may take offense to one minute may actually be something we agree with after giving it some thought.

If there’s something specific about the label that rubs you the wrong way (the wording, the image, misinformation, etc.), please let Health Canada know.

If you have a more effective way to help educate people about the risks of smoking, please make those ideas known!

I want to be clear that I’m not trying to start an argument within the ostomy community, nor am I interested in debating over the rights someone might have to smoke. I would love for us all to have a collective voice that benefits everyone in meaningful ways, and that starts with open discussion.

Thank you for reading this.

References

• Consultation on the proposed Tobacco Products Regulations (Plain and Standardized Appearance) – Health Canada
• CDC alters anti-smoking ads after complaint from ostomy association – The Washington Post
• Health Labels for Cigarettes and Little Cigars – Health Canada
• Graphic Canadian Cigarette Warning Labels and Adverse Outcomes: Evidence from Canadian Smokers – WHO
• Graphic Warning Labels Elicit Affective and Thoughtful Responses from Smokers: Results of a Randomized Clinical Trial
  Evans AT, Peters E, Strasser AA, Emery LF, Sheerin KM, et al. (2015) Graphic Warning Labels Elicit Affective and Thoughtful Responses from Smokers: Results of a Randomized Clinical Trial. PLOS ONE 10(12): e0142879. https://doi.org/10.1371/journal.pone.0142879
• Brewer NT, Hall MG, Noar SM, et al. Effect of Pictorial Cigarette Pack Warnings on Changes in Smoking Behavior: A Randomized Clinical Trial. JAMA internal medicine. 2016;176(7):905-912. doi:10.1001/jamainternmed.2016.2621.
• Noar SM, Francis DB, Bridges C, Sontag JM, Ribisl KM, Brewer NT. The Impact of Strengthening Cigarette Pack Warnings: Systematic Review of Longitudinal Observational Studies. Social science & medicine (1982). 2016;164:118-129. doi:10.1016/j.socscimed.2016.06.011.
• Our Response & Action to the CDC’s Ostomy Ads – Fight Colorectal Cancer
• Cigarette packs with graphic images, blunt warnings are more effective: focus groups – Toronto Star