Yeah, and people who say this as if they’re uncovering a secret disability fraud scheme probably don’t look like patronizing, asshole ableists, but here we are having this discussion. Whether someone looks disabled or not does not give anyone the right to harass, record, or otherwise be an asshole in public. Everything public is meant to be accessible and usable by all people, not just those with the most common or convenient needs.
Here’s a disability-related look of my daily reality, although I don’t have visible disabilities. I never have a pain free day, nor do I have a nausea free day. On the 1-10 pain scale used in ERs and doctors’ office charts in my area my pain is a 5 on a good day. That’s with medication and a surgical implant. Also, rarely do I have a day without some degree of lightheadedness that can range all the way up to vertigo.
Those are the symptoms that most affect my abilities to perform normal daily tasks and live life. I have quite a cluster of other problems caused by a number of conditions I have that add layers of discomfort, pain, exhaustion, brain fog, memory issues, and other much less pleasant issues.
So in addition to constant head pain that fluctuates in type, areas affected, and severity, my constant nausea fluctuates. Sometimes I throw up, sometimes I just fell like I have to all day, and moving around increases that likelihood. Lights, sounds, many smells, movement, being in a car, temperature fluctuations, and physical activity all make my pain, nausea, and sensory sensitivities worse.
Some days I only get out of bed to go to the bathroom. Sometimes I sleep 16-20 hours a day. Sometimes I sleep 2-4 hours a day for days on end. I don’t have control over my insomnia or hypersomnia.
Add to this I have conditions that affect my immune system, blood pressure, heart rate, asthma, irritable bowel syndrome, bladder dysfunction, a tendency for and history of chronic sinusitis and bronchitis, multiple indoor and outdoor allergies that aggravate my asthma and sinus issues, multiple injuries in my lumbar and sacral spine, depression, OCD, PTSD, and anxiety.
Another fun perk of chronic pain is that your nervous system can adapt to your state of constant pain as being a normal, good thing, so it decides to do a fun thing called Central Sensitization. This means that things that didn’t used to cause pain and shouldn’t theoretically cause pain can become painful.
Brushing your hair? 😂 No, no, no! That’s going to feel like Freddie Kruger or Edward Scissorhands is giving you a deep tissue massage rather than the light combing your doing. Wearing fitting clothes or being crushed by a boa constrictor? We can’t trust our tactile reception or pain response when we have Central Sensitization. Sometimes everything hurts. Then the next day the same action may only be mildly uncomfortable. Our nerves like to keep us guessing because they are adapting the best they can.
Great thing about this? It’s another mostly invisible illness! So yes, please state when you see some seemingly “normal” or “able bodied” person doing some weird stuff. Also, if a disabled person does a “normal” thing this automatically means they aren’t disabled, right?! 🙄🤦🏻♀️ Better yet, mock them and post to all available social media without the person’s knowledge or permission. You’ll be a real hero for gatekeeping for the real disabled people. I imagine diagnosing people takes less than a second of time to run through your Captain Oblivious Disability Gatekeeper check list.
Another fun possibility with high pain levels and chronic pain is peripheral pain or peripheral symptoms; when your main affected area of pain gets too intense your body just starts sensing and feeling weird stuff. My favorite was when my tongue, left arm, left hand, and left pinky all went numb. I thought maybe I was having a stroke in my early 30’s. Nope. My migraine pain got so intense and lasted so long my body started diverting some of its focus to other weird symptoms. Sometimes my torso felt as if I’d been beaten, and pulling on a soft, stretchy, t-shirt made me cry. My skin contact with anything was so painful that day I was continually fighting off tears.
So if you find yourself out in public and see a person using a wheelchair or any type of assistive mobility aid don’t take it upon yourself to feel free to guess if they really need it, suggest they lose weight, or offer them a groundbreaking opportunity with your multilevel marketing products. Don’t stare, take pictures or video, and definitely don’t upload them to websites meant to mock people.
See someone wearing dirty clothes, clothes way too small or big, who smells bad, who is talking to themselves, who is crying, whose child appears to be having a temper tantrum? If you do not have any kind of help to offer then do nothing. Taking photos, assuming they are deserving of ridicule or judgment because they are in public and don’t meet your standards isn’t a reason to be a jerk.
Often people with different disabilities may go out for necessities or appointments and it takes all they have just to go out. They may not have the energy, ability, or mental willpower to dress up nicely, shower, etc. AND go out for shopping, doctor’s appointments, etc.
I can say this from personal experience. I may only have the willpower and energy to push through my pain and symptoms for so many tasks in a day and after that I’m unable to function. I probably look like someone you wouldn’t want to sit next to in the waiting room. However, I got up and did what I had to that day. I took care of my needs.
That’s often what it’s like when you live a life of chronic pain and disability. The last thing we need is public humiliation or people questioning if we really are disabled or just lazy. We don’t need harassment about using the disability parking spot and loud speculation about if we are using someone else’s placard. If you take anything away from this it’s try to be more kind and understanding. Err on the side of compassion.