'Expert' Opinon

A few weeks ago I found a brand collab from years ago printed out in a stack of paper more than ready to shred. I remember I didn't book this one. It was a large brand looking for a 'disabled influencer/expert/advocate'. They had approached me directly, and we went a few rounds, but in the end it didn't pan out and I was glad for it.

I thought a lot about these brand asks over the years. How I felt like I'd reached a milestone when I was first approached, and how I gradually grew confused as they bestowed names like expert and advocate on me.

In my mind, I was never a chronic illness or disability 'expert'. I am not sure I ever consciously considered myself an 'advocate' either, even though I was definitely vocal about all my experiences when I shared them. All I have is this life. All I am is these collective breaths, these stories and these distilled thoughts. That's it. I've done a ton with my life, but sometimes, my mobility and my health express at varying degrees. Does that make me an expert? I don't think so. An advocate? I'm not sure. I like to share as much as I can so others might relate. Most of the time there is a joy to being in this body and I am interested in discovering life as it unfolds. If others can learn from me, that is definitely a benefit. I am resilient. I adapt well, but I have to say I'm not great with transitions yet. Change yes -I can process change -but long drawn out transition with no goals or planning in sight? Not quite yet. That can definitely be hard when my health or mobility or life in general throws me a curve ball. My point is that I'm not even an expert at living in my own body. I am a work in progress - but I also love the cosmic 'aha' of life. I learn. I spend a lot of time thinking about what I can take away from a situation and how I can apply it.

A few years ago, after hearing 'advocate' and 'expert' thrown around, I started wondering what my eventual 'aha' might be.

Would it be tied to my identity? My self worth? My professionalism?

When I was first introduced to Instagram I was taking pictures of everything and anything I wanted to - a beautiful crack in the sidewalk, my child, the food I ate, an amusing street sign. That kept evolving as things do, realigning to my writing, reflecting partnerships or my blog themes. Soon the content itself was king, swallowing my long-format focus: Instagram basically became my blog. There was only the daily micro content of picture and post there, and that became my @bumpandhustle identity. But it didn't reflect me as a whole.

In the eyes of the algorithm, I was no longer the person who took a photo of something they liked and posted it. I was no longer someone who had been in marketing and brand strategy for over 20 years; who had been writing freelance and creating and producing content and campaigns. I wasn't the same girl who loved her kids and movies and comics and music, and felt eager to share posts on anything and everything. I didn't share glimpses of all of me, I was only sharing through one lens. While my numbers were going up, slowly everything else narrowed. I felt like posts became 'not the right brand' or 'not the right platform' and I was known less as a lifestyle and mom blogger who also posted about chronic illness and disability, and more as someone who only posted about disability and chronic illness. Wait. I have posted about my health since 2010. Where did the rest of me go? Oh I was definitely myself, but this is when I started being sought out as 'an expert' or 'disability advocate' simply because I waking up, being a mom, and sharing my story or speaking my truth while living in my body. It was interesting.

Now, this isn't intended to devalue what I was going through, or my effort or achievements as a storyteller on line. There were other exceptional disabled content creators that I was so proud to promote and connect with - I loved my content creation and loved connecting with my growing community. But connecting with businesses and brands had gone from feeling like that wonderful milestone to one that was making me feel...off.

Some brands connected with me magically, organically, building genuine relationships which I welcomed, but others were clearly looking to diversify their brand representation with optics. While some of these brands legitimately developed products for equitable and universal consumption or had targeted products for those with disabilities (or genuinely aligned their core principles of inclusivity with their actions), there were other brands that assumed that just because I was an ambulatory wheelchair user or sometime rollator-user, I would suddenly also know everything about home accessibility, renovations and everything in between. (You are disabled ergo you are an expert on all things disability.) They weren't asking me about my own lived-experience, they were asking me about the entire disabled community - something I couldn't speak to.

Other brands would ask me for disabled business resource input while contracts were being hammered out which was great (do you need any accommodations, any extra assistance, etc), but then didn't want to honour anything I said when it came to fees that directly tied into these or project turnaround, some going so far as to say that I was incorrect. Um. Still others would say it was so important to have my feedback and input, but when I or my community had vital feedback about products, events, or brand-related concerns about disability or accessibility during a campaign they would shut me down, and continue without change. This fascinated me because I wasn't just a disabled and/or chronically ill influencer. As a marketing consultant and brand strategist my actual professional opinion was instantly dismissed. Instead brands assumed my expertise to be in accessibility - something I knew nothing about beyond what my own body needed. I had created multimillion dollar brands, worked with others (including high profile clients), produced multimedia campaigns for multinationals, but all of a sudden brands considered me an 'expert' based solely on my disabilities. The cognitive dissonance and ableism of optics started to grate on me hard.

At the time I was blessed to have a part-time salary, but like many during the pandemic finances were incredibly strained for our family. We really needed the extra revenue, and I was excited to be generating it doing what I loved - engaging with my community. Connecting. Talking about something important that I lived everyday. I mention this in a previous post -my life then was a fluid action of storytelling. Even with my neurological symptoms getting worse, I felt blessed and it was easy for me to post until it wasn't. Offers to share my lived-experience with brand partners that had further reach felt good. But for every small business, aligned brand, and lovely collaboration that I said yes to; there were more of these draining or confusing contracts to negotiate that made their campaigns run on pure optics, complete with weird asks like the nonnegotiable use of my mobility aids in all pictures. I kept fighting non-equitable fee structures, contracts that no one should sign, trying to gently educate agencies and brands on cost and resource differences due to accommodations if they actually wanted to work with disabled influencers. By the time a contract was signed or I decided to pass (or they did), I was already exhausted.

There was also often an assumption that I had a thriving office, an admin team, an in-house accountant, just because I was open to collaborations...They know they're dealing with someone who is dealing with disability and chronic illness, right? They know I have kids, right? That I work from home? They know I'm not ok right now, right? They know that I am frequently dealing with symptoms, right? They do watch my content?

Subject: URGENT REPLY!!! We can't wait to hear back. Re: "BIG BRAND NAME" DEAL

Hi Kat, Just following up to see if you are able to connect with us about the potential collaboration below. We were hoping to get started on a campaign ASAP.

Thanks!

"Linda"

Hi Linda, I am not sure if you saw my stories, but I have been admitted to hospital and will be here for the next few days at least until we can get my symptoms under control. I will have to sit this one out.

All my best,

Kat

Hi Kat,

Sorry to hear that you are in the hospital. Do you know how long you'll be in there? We'd love to get started on this campaign. Is there any way you can have an assistant or someone review documents and give a formal response?

We would hate for you to miss out on this opportunity.

Linda

This happened frequently. The fear of not healing would trigger a silent starter pistol deep within me. Can I do this? Could I do this from the hospital? I would feel shame at my condition coupled with the hope that I could somehow overcome it escalating quickly within me. I would feel the stress of letting my family down; the fear of losing an opportunity for revenue -and knowing that once you turned one down, they likely wouldn't be back no matter how many times they said they would. I knew I was replaceable. This is just the way it is in a lot of casting-based businesses, but especially at the time it hit hard with what seemed to be the hunt to fill the void of disabled influencers to bring some kind of equity and inclusion to the influencer landscape. I didn't feel this from every brand - not every company. But when I did, I was overwhelmed to the point that even from my hospital bed I remember calling my husband, feeling like there was something I had to do. Some aspect of relationship I had to salvage to be the expert they needed me to be. To provide for my family and my community. I was blessed to be reminded that we choose our health first, and if they truly were the brands they said they were, they would reconnect with me. I always referred and passed the opportunities on to my community, and that made me happy, but I was disappointed a lot during that time, and my cynicism informed my expertise in business marketing, brand strategy and being a 'disabled influencer' in general. I learned so much from my experiences. For a while I started thinking about providing consulting services to these brands that were scrambling to plug disabled influencers into their campaigns, or even to other disabled or chronically ill micro-influencers dealing with brands- to equip both sides with helpful resources- but that didn't turn out to be my path, or it hasn't yet. It just wasn't my 'aha' moment.

Instead of a new goods and service offering, or even more brand contracts, my hospital visits increased. Incoming brand emails went completely unanswered thanks to the transient aphasia I was living with days at a time. My Hemiplegic migraine attacks were spiralling out of control. My inability to find words, read and write for days crushed me. I was very lucky to be dealing with one interested agent whose faith in me to deliver was incredible, but even then, I had to bow out of my commitments and as I wrote about in previous posts, I was having conversations with my specialists that would take me away from all of this kind of work for some time. 4 years to be exact.

Read the post about Kat's health that took her offline.

The first year as I healed slowly and found strategies, I volunteered in my community. Emboldened by support that came my way, I reached out to a couple of the brands that I had relationships with - who still considered me an advocate or expert with influence - and explained that I needed to be offline but that I was still trying to be active. If they were open to sponsoring me with different kinds of campaigns, I would be happy to do whatever I could to work with them. I had so many ideas that would directly benefit them and potentially create or expand social responsibility programs. But nope. At the time they were reluctant to listen, telling me they 'had no such programs', no resources, or 'didn't do that kind of thing' - just online collabs. In fact there was nothing they did in real life. I needed to be filming, posting, and engaging. "But let us know when you're back on line, ok?"

It felt like the message was clear: More optics. I was devastated. Brands at the time weren't ready. And I wasn't ready to back.

I wanted to go back back on line, but it just wasn't my primary focus. It couldn't be. I still had a lot of issues with my writing and reading - a simple 5 minute writing task would often take several hours - even volunteering as a co-chair of the parent council at my kid's school was causing me serious anxiety in terms of being able to write simple emails, texts and basic communications. There were still days that I didn't know how to process answering a phone, or recognize a name, or even know what what words to use. But with every click of the send button, I released old content creator milestones, and leaned back into myself to rebuild a strong core foundation.

By then I wasn't posting anywhere. I wasn't marketing my business; wasn't trying to be in an influencer, provide social media marketing, or consulting. I was just working hard to heal and align my health with my purpose again - wherever I was needed. If it was business, great. If it was community, amazing. Every morning I focused on being an expert at breathing, an expert at existing, an expert at being - whole, a mother to my two beautiful kids, a woman, a friend, a wife, someone who could help, who knew a business factoid, who could hug ... whatever the day brought me.

For a couple of years, I stayed more active in my community. I threw myself into as much as I could with an incredible team of women who inspire me to this day. In those 2 years I also had 2 operations for my endometriosis, and with them my mobility also started to improve drastically. My migraines slowly started becoming tamed by various treatments, and I found myself able to clock more and more hours back at my corporate post until I returned full-time. I was so proud of myself. My attacks were still happening, but I was equipped with so many strategies now that I wasn't as scared of losing my words, or not being able to read or write even as I experienced episodes. My brand strategy and business expertise had started flowing easily, especially with compassion, and I was now able to explore my team's needs on a whole new level. I started writing policies on flexible and inclusive work schedules, leadership pathways and accommodations -my real expertise had been amplified by my own lived experience and even advocacy meant something different.

The only thing I felt was that I couldn't tell my story. Not in the same way. Not yet. I felt the passion of helping my community, but my healing hadn't quite caught up. But as I turned my eyes inward- to my shock I was no longer worried about brand milestones or even optics. I was no longer concerned about what people might see if I wasn't able to find my words, I wasn’t worried about the timing of engagement, or returning to post online, and feeling the exhaustion of Instagram's algorithms and brands. I saw instead the whole picture.

I realized I set the pace. My healing had already done so much for me and I know it will continue through life's ebbs and flows. I just need more time, more breath, and more compassion - and if I am an expert anywhere, I am definitely an expert there.

Following this path of waking each morning and trusting the process, I have not only survived but started to thrive. I have continued to believe that whatever path we are on holds purpose, as long as we are breathing. Over the last year, I was promoted to C-suite- a huge celebratory milestone for me on so many levels. A huge accomplishment for me, I have started writing again at my own pace, and even very slowly started posting again on LinkedIn. I have begun the tech renovations and makeover of my corporate websites and blog. I don't know when these things will launch, but they will. I know I will keep going, and helping and sharing whenever and wherever I can, because that is who I am.

I celebrate all that I don't know when I wake up every morning and breathe deep. I honour the space in my heart and mind for all the learning I have yet to do. I remind myself that I am a work in progress. I keep sharing my story even if it's only me who is listening, and I keep moving myself forward.

I remind myself that I am an expert at not being an expert in my own body.

Aha.