I Don’t Want to be an Inspiration Today, 2011

Vulnerability is for the brave. - Lidia Longorio

Sometimes I feel like this. I drew this in 2011 before “inspiration porn” was coined. This illustration could encircle what being the center of inspiration porn feels like, and how at the end of the day gratuitous comments like, “You’re an inspiration” isn’t enough when all we want is change.

Inspiration Porn is an image of a disabled person doing something ordinary while dutifully wearing an inspiration halo given by a non disabled society. This exceptionalizes and objectifies disabled people as inspiration porn which allows non disabled people to put their own worries “into perspective”…to be grateful they’re not us. Using these images as feel-good inspiration is based on an assumption that disabled people have terrible pitiful lives, and that it takes some extra kind courage to be us.

But this drawing also depicts the feelings I was having in the beginning years of my advocacy (2007) and still do —feelings that can arise from being a public advocate, and all the responsibilities that come with this role underneath a spotlight while simultaneously struggling through the thing you’re advocating for. What I really felt when I drew ‘I Don’t Want to be an Inspiration Today’ is how difficult it can be to be known for something that’s been so arduous, especially the way I advocate.

Some only advocate about disability through the lens of societal obstacles and that is OK. Ableism and inaccessibility is a big part of daily struggles for disabled people. But from the beginning I also chose to be honest on what this progressive rare disease and disabled life is truly like.

Talking about societal barriers is easier, being vulnerable about the personal is much less so, but I share this more honest side because there are people who are newly disabled or have been for a very long time and still struggling. Nothing good comes from pretending something that isn’t or you aren’t.

I share about loss and grief because that IS what IS happening alongside the triumphs, empowerment, dreaming and accomplishments. I’m not a monolith of emotions so obviously I feel a range including joy and passion, but grief and loss has also been a big part of this disabled journey, too. To pretend otherwise is to deny my own and others’ experience. To pretend away the moments of who we are when a crowd isn’t looking is a disservice. .

In 2006, I accidentally fell into advocacy. The amount of pro bono advocacy work I was doing back then along with a full time job was intense. It still is even after 17 years, but I think it’s important work. This hasn’t come without personal struggles in doing so.

To be so public and open, I often doubt myself in the amount I share. I never wanted to be the “inspiration”. I’m still not used to my story being splashed everywhere, and publicly spilling my intimate vulnerabilities is something I do, but it’s not easy. I’m happy to share, but I’ve also had a fear in growing my following, not only because more eyes equals more criticism (i.e. online bullying), but because there’s that many more eyes to watch me progress to a stage that I’m not sure will look like. I want to be known as Kam and not necessarily because of something perceivably sad in my life. 

.In my advocacy, I share the nuance of being proud of yourself and the package you come in, but also how that package can be painful and grief stricken, and that it’s ok to acknowledge this.

It’s hard. The grief, the loss. Some advocates have gotten mad at me, saying I shouldn’t be so negative about disability, but I don’t think I’m being negative, I’m being real. This is what I don’t like about advocacy or rather, micro advocacy: the going around and telling people how they should feel and do things, but there’s no one way to do anything, and the same goes for disability and how we process and experience the path through acceptance, grief, and loss. It makes me upset that we can’t talk about this or the emotional journey of disability, and that in so many ways the online “influencer” space of constant empowerment dictates how people should feel. But I’m not here to be a “fierce b*tch” (as we like to annoyingly say to each other, as if this equals empowerment), and I’m not here to be a life coach (please, do not call me this). I’m just here to share my small corner and say, I’ve struggled, I’m struggling, just like you, so take anything you can from my experience, because you’re not alone.

The point is there is also the journey of acceptance. Treatment may never come about for people like me, so it’s been important to also communicate the processing of the emotions through the milestones of a disabled life, while also knowing that you can have a fulfilling existence. I don’t think there’s enough advocacy in this area that talks to disabled people, and this is what my advocacy is about; it’s for disabled people, it's not about disabled people. 

I know what loneliness feels like and I’ve used this to propel me through continued advocacy in hopes that it matters to someone who feels alone. And don’t we all feel like that sometimes? Just utterly alone? Like. What’s the point? As we helplessly lie on the floor, forcing the window light bands to crawl over us. Give those bands some time to saunter over your body even if a crowd is watching, and know that you can. #kamdraws