Disability and admitting that one is disabled should not be a social faux pas. Everyone is fully able-bodied temporarily. Whether it ends in a sudden accident or the slow creep of life, we’ll all face it in some way. Many of the more….let’s call them inspirational for the sake of conversation…terms come from a place of discomfort. You may think that this is the whole point! We don’t want disabled people to feel bad, so we use other phrases! However, that’s not what I’m meaning. It can get a little complicated, so let’s try and break it down a bit.

Take this as referring to all the phrases like “Differently Abled” and “Disability is My Superpower” and all statements that are similar. On the surface, it seems to be very much a positive thing. The statement even has a more positive birthing when it came about in the 1980’s from festival workers. From people wanting to be seen as human, equal, and worthy of taking up space. For a long time, people born with deformities or significant disability had few options. Often those options included freak shows or an institution. The phrase was originated to be used to help illustrate that just because they look different or have different physical needs, it doesn’t mean they’re less. Just because someone needs a wheelchair or a walker doesn’t mean they can’t enjoy the same things you do. Now, I want you to really sit with this for a moment or two. These phrases came about because we had to remind the rest of the population that people born differently were still, in fact, people…..

Take an honest amount of time to think about the implications. It may sound harsh against such positive sounding intentions, but look at it from a step back. The phrase came about to remind able-bodied people that people with a disability…are still people. To be quite frank, there’s still an uphill battle for those of us facing extra need. Just walk around with a cane and you’ll hear all sorts of reminders. With enough time, you’ll hear plenty of unwelcome opinions that come out of left field. Persuasions that if you use your aids too long you might never be normal again. Suggestions of trying yoga or some new essential oil from a popular MLM scheme. Concerns if you look young that you’re possibly faking your illness for attention. The simple act of using a mobility aid is approached by way too many people as something to police. I dream of a time when the most common discussion about one’s mobility aid is to compliment one that’s been decked out to be a cool personal accessory or tips for getting maximum benefit.

We’re in a culture that want’s to use “differently abled” to remind others that disabled people are human. Are we accomplishing this while an overwhelming number of people will jump at the chance to try and convince aforementioned disabled person that they should maybe just try harder to appear “normal”? We don’t need a shift in wording, we need a shift of culture. A shift in understanding. A shift in acceptance

Acknowledging that some of us have to have accommodations is just a fact of life. That being said? It’s still a major consideration and deserves to be thought of as such. I can still travel, but I have to pack medical bags, make sure my meds are all in order for long and short term, consider what mobility aids I need, work out how to travel with all my ring splints, plans for meals way in advance, look at communication availability of the location, and discuss with my partner or travel mates what to do in case of emergency. Spontaneous trips can be exciting, but they can also carry more risk than average for someone like me. Does that mean I never do such things? Pfft…no. But it does mean I’m more keenly aware of what I’m risking as consequences so it happens less often.

Whether work or pleasure, so many things have to be taken into planning of day to day life. That’s fine, but the more feel-good phrases of “differently abled” carry a hidden implication of small accommodations make someone more “normal”. A way of gently side-stepping responsibility of those around you to consider what may assist in your ability to perform and/or enjoy what is happening. A congratulations of how much you’re able to be like “one of us”….and now we don’t have to worry about it because you’ve got this! A permission slip to pass the buck. Even to the degree that when the impact of chronic illness/disability becomes overwhelming, it opens the door for a pat on the back and token phrases of “But you’re so brave!” to follow up. This slips into another facet of this impact….

You’re Such An Inspiration!

Sideways encouragement like being perceived as brave or strong…doesn’t hit how one might assume. Imma hold your hand when I say this….telling us that you don’t know how you’d survive if you had to live our lives? It likely doesn’t make the subject of your “praise” feel proud or renew their ambition. Many of us struggle to keep going and there’s a constantly growing number that have given up. It could be the lack of support, access to proper medical assistance, or simply the reality of what someone’s condition takes from them. What it comes down to? It doesn’t matter the specific reason because we’re not here to judge someone for how they feel in the moment.

There is a less obvious burden that comes with such sentiments. We not only have to navigate our own challenges to survive…but we’ve got to serve as an inspiration for you too. I’m fully aware that this is not intentional. Well, at least most of the people I know would never mean it this way. I’ll assume that if you’re reading this, you’re in the same demographic of intended support. Let’s pull the previous concept into this. Statements meant to remind everyone that we’re equally deserving and worthy. Yet what is getting brought to attention? Coping with something that was forced upon us. Not our creativity or business skills. Nor out wit or our grace with children. Our ability to *checks notes* do normal person things. Can you see how maybe, just maybe, that it chips away at our humanity? Even if it’s just a little bit?

This is related, in part, to all the inspirational videos that are popular. I’m sure ya’ll have seen at least one by now.

• Marathon runner was in a car crash and the doctors said they’d never walk again. By SHEER WILL POWER…they got prosthetics and started running marathons again!
• Artist lost their arms, but PERSEVERED to learn how to paint with their mouth!
• Child born with no legs PUSHED THEMSELVES to be a champion swimmer!
• Woman OVERCAME HER ILLNESS to get a degree!

The list goes on and on with possibilities. As we discussed with the term “differently abled”, it sounds positive and encouraging on the surface. It even touches on what was just mentioned and celebrates accomplishments of the individual. Yet…look at the highlighted words. If you can imagine for a moment that you’re faced with a similar disability. What might you feel? Would you be motivated to try harder? Would you simply be happy for the person in the feature?

Or…..

Would you perhaps feel shame that you have not achieved as much? If you see your loved ones posting these videos, would you feel like they acknowledge that you’re enough the way you are? Would you feel pressured to stuff your needs aside in preference of achievements?

It’s where the term “Inspiration P*rn” comes from. It’s a video that makes you feel real good. However it lacks the reality and real life experience. It gives you a glorified perception of what real interaction in that situation looks like. And you never see all the behind the scenes that made it happen.

Some of it is absolutely work that we have to do as disabled people. We have to also willingly step back from feeling such responsibility. That can mean different reactions for every individual. It may mean calling out loved ones on their impact. It could mean deciding that you’re not engaging in such conversations. It may mean brushing off the comments as if they didn’t happen. It could be discussing accommodations at work. It might even look like wearing mobility aids when before they tried not to. It may even look like reevaluating how they approach all their relationships moving forward. It may even look like therapy and choosing to give up on certain dreams for the sake of their health. How it looks will never be the same for all of us.

Unfortunately, this can also come with social consequences for us. Change, even when beneficial, doesn’t happen in a vacuum. It’s a community effort. It doesn’t mean that able-bodied people need to carry the entire burden, and the disability and chronic illness community can’t do it on our own.

What Can We Do to Encourage the Change We Need?

There are people doing the work of helping people step into the mindset in a more constant way like Imani Barbarin that has accounts under Crutches and Spice on social media. They tackle many subjects in a way that I can’t replicate and deeply appreciate. (It was actually a recent post of theirs that reminded me to pull this draft up from the depths of 2020 and finish it). Check out accounts like that.

Look at our own bias that may exist. Are we judging ourselves or our loved ones by a metric that asks them to flay themselves for the sake of reaching goalposts that were set by outsiders or allowing them to walk their own path? Are we expecting others in similar circumstances to ourselves to have the same priorities in the same way or giving them the opportunity to choose what they feel needs the most effort? Are we listening to what our disabled and chronically ill people are feeling and holding space or are we trying to skip to the part where we feel better?

Do we put ourselves on a pedestal because we aren’t in a position where a new building not having a ramp doesn’t impact us? Or do we notice that it doesn’t and make effort to change it where we can? Do we stop when we can access things we need or want to do? Or do we add to the voice of those still disenfranchised? Do we expect everyone else to carry our burden as disabled people? Or do we try to work with those around us? What do we think working together needs to look like? When we celebrate the accomplishments, is “despite everything you deal with” included either out loud or behind a bitten tongue? There’s no perfect way to approach change of this magnitude, but there’s the willingness to try in good faith.

If this hits funny, please remember that this is not about denying accomplishments or walking on eggshells. I’m not saying we SHOULDN’T celebrate the accomplishments of those that are disabled/chronically ill. I’m saying we should try and learn a mindfulness around it. Base it from a place of love and respect and we can learn to shift in a more authentic way towards true acceptance. It’s not going to be an easy path because we live in a culture that presses all of us to judge our worth from our ability to produce. However….

Look at this little hover fly on the flower. We don’t say, “Wow! You do such a good job and thrive even though you’re not eating dead stuff and poop like your cousins!” Nor do we say, “You’re so brave, little fly, pretending to be a bee. Out there doing things like eating and flying.” Such things likely sound absurd. It’s just a hover fly, doing hover fly things. It’s not out here worrying about whether its stripes are good enough. It just wants to fly and eat and mate and keep enjoying its little fly life. When it becomes unable to fly, do you think it will try its best to survive? Or do you think it would benefit from all the other flies telling it to do flower yoga so it can get back to things?

We’re all out here doing the same. I’m not working with my OT to find ways to do my art because I want anyone else to be proud or give me their approval. I do it because it matters to me and feeds my soul. At the time it becomes no longer healthy for me to do so…do you think I need to have my reasoning and choices ripped apart by those not living in this meat suit? Or do you think I just need someone to be there with me and give me the space to grieve? Someone to support my choices, even if they’re sad and inconvenienced by how I’ve chosen to put myself first?

I’m a bug nerd, so I’m not sure that suggesting that if you wouldn’t say *insert questionable phrase here* to this cute little hover fly, maybe don’t suggest it to your disabled/chronically ill loved one. While that works for me? Find something that works for you to help knock down some of what society has written into your world view. I’ve got faith in you to make the steps!

It’s not an easy road or a quick road. But if we all chose to head towards that destination? Even if we all take our own detours and arrive at different times. With joy just as much as frustration and grief. With missteps down the wrong paths alongside sprints towards the goal…we can get there.