Why Honesty Is Crucial for Effective Advocacy

Alliah Czarielle avatar

by Alliah Czarielle |

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My husband, Jared, and I are fond of advocacy work. Our advocacy for people with chronic and mental illnesses inspires many of the things we do, including the way we run our small business.

Our online jewelry store is our bread and butter, but it also is a way for us to raise awareness about what people with disabilities experience. In doing so, we hope to eliminate common stereotypes of persons with disability (PwDs), such as the idea that because of their limitations, PwDs are always dependent on others. This certainly is not the case, because many PwDs in our community raise families and are active contributors to the economy.

In this day and age, we are blessed to have access to social media, which is an extremely powerful tool in driving advocacy campaigns. It’s so easy to talk to other people about the things that matter to us. But the question is, why should they care?

It seems one of the biggest challenges in advocacy is how to communicate our causes in such a way that our target audience hears us, understands our message, and is moved to action.

Jared and I recently participated in a taped interview for a local advocacy project aimed at PwD empowerment. We were grateful for the opportunity to share our experiences as a couple of entrepreneurs living with chronic and mental illness.

Jared spoke in earnest about how hemophilia bleeds and injuries occasionally prevent him from accomplishing his daily responsibilities for our business. I opened up about the stigma surrounding mental illness and how depression and anxiety took a toll on my self-esteem while I was working in an office.

It felt good to open up and finally be honest about our challenges. Yet, at the same time, we also felt that we couldn’t be too honest in our manner of expression lest it appear that we are complaining about the hardships in our lives.

The reality is that our lives as PwDs can be tough. There’s no sugarcoating that fact. But for the sake of successful advocacy, we often believe that we must speak more about our strengths and less about our hardships so that others will listen to us and believe we are important.

Advocacy for people with disabilities is about speaking up about what a PwD wants or needs. By this definition, a PwD should be able to speak their full and honest truth. Those conducting advocacy projects involving PwDs must encourage them to feel comfortable to express themselves in ways they find most effective. If PwDs can’t be fully open and honest about their problems, how would other people help with finding solutions?

We must also beware of confusing advocacy with advertising. While it’s well and good to talk about PwDs’ strengths to inspire and encourage others, a PwD also should be allowed to talk about the other side of the coin. Otherwise, their struggles become invalidated. Worse, a PwD might be objectified solely for the purpose of doling out inspiration. If they suddenly fail to inspire, others might not appreciate them anymore.

We should remember first that PwDs are human. Just like everyone else, we have imperfections. We can be productive sometimes and lazy other times. We may seem inspirational to others, but deep inside we might feel burdened and uninspired.

We don’t exist to gratify others. We are simply figuring out our own lives, and happy to help others along the way.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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