Why raising awareness can be more complex than we might realize

Sharing information must be done with care, contemplation, and consent

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by Elizabeth Hamilton |

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“I know you!” The stranger’s surprise utterance greeted me at the elementary school of Amelia, my youngest daughter, who’s now 12. It happened years before she was diagnosed with Friedreich’s ataxia (FA). This type of encounter happened occasionally: A random stranger would recognize me, which caught me off guard.

Let me explain. Over a decade ago, I was promoted to a dream job overseeing a department with volunteer programs and an incredible donor base. A robust marketing campaign for our seasonal program had me sitting on interview couches with news channels, conducting radio interviews, standing on stages before crowds, and talking with local journalists for two months at the end of each year. It was busy, fun, and complicated.

Why was it so complex? Because it can be challenging to explain to others why support is needed for people who are struggling — whether from trauma, a mental health diagnosis, or other barriers to their well-being — in a way that solicits funding while being strengths-based. I wanted clients I worked with to hear me talking and feel good about themselves as well as their involvement with our programs. I wanted to be honest about the need and to ensure strong outcomes for clients who were sharing their stories.

Staying true to my social work roots, I dug into the research for guidance. I came up empty-handed.

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A role reversal

Pulling from what I knew, I created guidelines for highlighting our clients’ stories. Over the years, I updated it as I gained experience. Now that I’ve moved from being a professional to being a client on the other side of systems and services, I use these recommendations in a new way. I want to build awareness while handling my own life with the level of care I’d provide a client.

The first thing I think about is informed consent, which is a big concept wrapped up in two words. It’s discussed a lot in research but not as much for publicity or outreach materials, at least that I can find. Most parents have seen legal waivers requesting permission to use their children’s photos taken during school functions. That allows a school to promote its work through social media, newsletters, and other materials. Such waivers are in almost every permission slip I sign for school.

I also see informed consent in almost all of the paperwork for the enrichment programs offered by local nonprofits that Amelia participates in. Informed consent for any of these promotional materials ensures that the client (me) has thought through and understands in detail what it means, not just for today but for the future as well.

An internet search of my name, for example, might bring up this column. Am I comfortable with a future employer, client, or others having the information about me in these publications? I think about that a lot for both me and Amelia. I talk with her about what I’m sharing because, even though she’s only 12, this story is hers, too. I want her to understand what sharing it means and build up her ability to make informed decisions. Sometimes she doesn’t want things shared.

Secondly, I want everything about our family and our lives to have a strengths-based message, meaning that we highlight our assets and gifts, not just our struggles. Having FA is hard, but I don’t want our lives to be painted with a broad brush indicating that we’re victims of this genetic disorder. We are still living fully with lots of laughter and love in our home. The message of what this disease and our need for support are like can also highlight how blessed we are.

I consider my emotional well-being before I agree to any interviews or speaking engagements about FA. I look at the calendar and make sure Amelia doesn’t have any medical appointments that week. Even if there are no signs that Amelia’s symptoms are progressing or new medical concerns have appeared and we breathe a sigh of relief in the doctor’s office, it still drains our energy.

It can also be traumatizing to talk about our FA journey. I want to avoid depleting or overextending myself, which I sometimes do!

Maybe someday I’ll find a great publication on evidence-based practices for highlighting client stories in a strengths-based way. Perhaps a reader will provide something in the comments below! Until then, I’ve found the above information helpful.

Do people still recognize me, even after I’ve left the lights and cameras of that former dream job? Yes, sometimes. Do I use that moment to explain what I’m doing now, after our lives shifted with Amelia’s FA diagnosis? Sometimes. Other times, I smile big, thank them for saying hi, and return to my current dream job of being a mom.

Note: Friedreich’s Ataxia News 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.


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