“So, how’s the job hunt going?”
I was at an appointment with my doctor, a yearly checkup or something to the effect. He was trying to make small talk while looking at a clipboard.
“It’s going,” I said. “I’m filling out job applications, going to networking events, reaching out to people on Linkedin, and honing my overall skills.” I elaborated that I wasn’t giving up, and proud of myself for trying to build a life in Chicago, even if that meant having one foot in and one foot out.
“The world needs more people like you,” he said without looking up. “People that realize that there’s more to life than just playing video games and living off government money.”
Huh? His comment carried an uncomfortable implication, an unspoken expectation. I left with a kind of uneasiness that I couldn’t explain, and for the longest time couldn’t figure out why.
I’ve become part of and have learned a lot from the Disability Community over the last year. My first steps were reaching out to a woman whose Facebook post had gone viral, needing validation regarding a long-desired dream. I’ve wanted to write and publish a book but questioned the right to tell my story due to having a lot of privilege as a white woman who can pass for being nondisabled most of the time. Her answer was a resounding “YES!” and that disability is fluid in both condition and experience. I joined online groups and began following prominent figures. I learned about the Americans With Disabilities Act, my own internalized ableism, and how SSI keeps many recipients in poverty. I read, watched, and listened as much as I could, and I’m still learning. It helped me begin to grasp what I previously didn’t have the language for.
When living with a disability, you’re either pitied or put on a pedestal. I’ve been both at one time or another, and it’s been why I’ve been so hesitant over the years to write for large publications and truly plant myself in the public space. I don’t like the idea of telling people what to do and how to live their lives, especially if I’m not in their shoes. I was (and still slightly am) afraid of being idolized to the point where I feel like I can’t be me. I wrestle with that enough as it is.
I’ve only been called an inspiration on rare occasions, but it’s been equally implied in other ways. The term may have fueled my sense of determination growing up, but I can no longer deny the problematic nature of the word and the weight that it carries.
It Has the Wrong Focus
When hearing stories of those facing more barriers/challenges, the common assumption is that the person isn’t working hard enough or saying/doing the right things. This leads to a harmful misconception that most disabilities can and should be “overcome”, whether by sheer willpower or divine healing. “Inspiration” puts the sole responsibility on the disabled person to not only make everyone around them comfortable, but they often must rely on that comfort in order to fight for and obtain basic human rights.
What most people don’t realize is that for decades, there has been a system at work that aims to discriminate against disabled folks, particularly in the workforce, healthcare, marriage, education, transportation, and even art. (I’m sure if Trump and the current administration had their way, we’d be locked in institutions again and out of public view). Rather than lauding (or pushing for more) we need to examine how society has systematically failed to see us and treat us as human beings, and then hold it accountable.
We have the technology. We have the resources. Any supposed reason not to address the system going forward is just an excuse.
It Removes Agency and Projects Identity
I won’t deny that grit, determination, and resilience are part of why I’ve reached certain milestones and accomplished a number of things in twenty-something years. But attributing “inspiration” to part of my identity has often made me feel like I have to be “on” all the time, and I end up struggling to tone that fierceness down when it’s not needed. I actually have a soft, romantic, and even sensual side, and I’m in the process of figuring out how to show it more often. I have to remind myself that I no longer need to spend my time and energy proving my worth, and I’m allowed to just rest and be.
Everyone has a right to choose how they identify, and reject terms and phrases put on those who have never been where they have. (Most of what’s deemed derogatory were done so by those without disabilities, believe it or not). I’m not “semi-disabled.” I have a right to ask for help (without being talked down to or infantilized). And I’m not being selfish by refusing to deny my needs related to having Cerebral Palsy.
I’m realizing that I don’t want to attempt to do everything, especially for the sake of being a badass. I don’t want to be everything to everyone, particularly if I have to forsake my mental and physical health in the process.
It’s Just Awkward
Imagine if someone were to approach you, and the first words for an introduction were “Hey sexy!” or something along the lines of that. Whether it was intended as a compliment or a come on, there’s something about it that doesn’t feel right. I’ve been there plenty of times, and in those moments I wish I worked up the nerve to say, “You don’t know me, so how do you truly know what makes me [insert adjective]?” I’d probably be accused of not being able to take a compliment, but if I sense that it’s not genuine, I’m not going to take it as one.
And I think that’s why much of the Disability Community bristles at co-opted adaptability, especially if they’re just trying to survive in a world that wasn’t built with them in mind. Some appreciate it, and they’re entitled to do so, it doesn’t mean everyone should be lumped together. If a disabled person says “this is hurtful” or “this isn’t helpful” that should be respected, full stop.
When it comes to giving praise or speaking highly of anyone, I’ve learned to use “I” statements to communicate that I’m taking personal responsibility for what I say and how I say it.
“I admire you,” or “I’m grateful for you” doesn’t seem like much, but it goes a long way.
“Thank you for sharing your truth,” or just, “Thank you for being you,” speaks volumes.
For me personally, it melts my heart when individuals take the time to ask me what I truly want, rather than trying to convince me to take what I can get all the time (both personally and professionally)
Context is equally important, specifically how long you’ve known the person for and what parts of their story they’ve shared. If you’re at a speaking event or conference, take in and sit with what they actually said before sharing what you’ve learned or what it means to you. There’s a time and a place for everything, and a first meeting isn’t necessarily it.
In a culture that values productivity and defines individuals by how they contribute to society, I want my message to be that what you are capable of doing matters. The world needs people who can do the little things as much as the big things. It’s perfectly valid not to want to be the next big polarizing figure, or the subject of inspiration porn (that’s another subject for another time). You are worthy of living life as you see fit, regardless of who tries to make you feel bad about it.
For those getting defensive about this subject, please check your ego as well as your privilege. Impact is always greater than intention, and if you don’t live with a disability, you don’t get to tell the disabled how to live. Part of being an ally to marginalized communities is the willingness to have some humility and be corrected, even when it doesn’t feel good.
I know that many will still look at disability a certain way, regardless of how much education and insight there is. And I know that people will still look at me in a particular light, regardless of how I ask to be treated. But I hope that my closest family, friends, and even potential partners will respect where I’m coming from, regardless if they agree or not. I’m still learning how to explain what I often don’t have to think about, because I live it on a regular basis.
And now the question is, if you’re so inspired, what are you going to do about it?