Tips from a Disabled Human - Part 1

Phones

If you have a cellphone, make sure to not lose it! It could save your life and be a lifeline, especially since phone booths are becoming gradually defunct. I cannot lose my phone or SIM card because it would also cost a lot of mental energy just having to change my number on verything including my bank account. I'd lose access to many apps. Every night it needs to be fully charged, as well as before each trip. Bring a spare phone charging dock thingy if you can.

Paratransit

If you cannot use regular public transit for multiple transfers on a regular basis, apply for paratransit, or learn to drive if you can. Many disabled people are socioeconomically at a disadvantage, so I understand how disabilities can become very expensive to have. This is why some people depend on friends or family to drive them around.

Wheelchairs and mobility aids

If you have any sign of fluctuating pain or health problems making you use a mobility aid, it's best to have a varied assortment of aids if you need more than one. I have multiple canes, and also, try not to overestimate your abilities regarding tolerance, because we are not invincible physically. Whenever I decide to leave my cane at my group home when I go out I end up regretting it. Limping in the morning when I wake up is annoying.

When you get out of a taxi, don't close the side door immediately before opening the trunk. The driver could forget you have something back there and leave. Signal to them you still have something in the trunk. A tiktoker once had a driver leave with her wheelchair.

If using airlines or are dependent on taxis ansd need a scooter or wheelchair, there's plenty of airline-friendly one you can get.

If your disabilities cannot be taken seriously enough or you reasonably fear you'll get dismissed by Occupational Therapists (can be the case with FND or even some types of pain), state programs, psychiatrists and other therapists, for example because you are an ambulatory mobility aid user and can walk a lot of the time, but need help for long walking distances due to energy depletion, pain, fatigue, etc, and especially if you have combined autism or other neurodivergences making your BADLs/IALDs/ADLs more difficult, your only four options are either:

- donations by mutual aid

- used aids on online marketplaces

- paying with work insurance (or a parent's insurance)

- paying out-of-pocket

Personally, because my grandfather died last year (which is sad), and left us things, we'll be able to get me everything I need soon. But: crowdfunding may most likely not work unless you're famous on TikTok or whatever. And even then you have to really research different wheelchair types, etc. and even try demos or rent one.

Don't sweat it if at first you have to depend on a 900$ Amazon 'made in China' wheelchair and can't find a custom fit chair. In my region, wheelchair dealers don't do their jobs properly so you just go in and they think you want a hospital wheelchair or a scooter.

You will maybe have to get more than one wheelchair in succession, because other ones don't fit right to your body or energy or are painful.

Determination

I can drive.

I can speak.

I can read.

I can form independent opinions.

But however, I have several disabilities. GI issues. Autism. ADHD. Minor musculoskeletal deviations/stress that can cause big pain in waves.

I wake up every morning with my right ankle hurting so bad I limp or a few minutes.

I cannot stand for hours in a supermarket, otherwise I get very tired and have back pain.

I get back pain from sitting for long periods. Even though this is recommended for my job.

And also, my biggest disability isn't even acknowledged formally by most people. I call it "human integration disorder".

Eating, walking, working, showering, and doing basic human tasks, if I had to do it once in a while, I'd be okay. However, when it becomes routine, and repetitive, because we live as consciousness in a human body - it becomes cripplingly hard.

When you have more "severe" HID like I do:

- You become more sensitive to your own pain and suffering, and have far less tolerance for routinely, repetitive tasks that demand constant physical and mental human effort out of you - to the point that just doing that for a few years constantly drives you to the edge and can result in a mental health hospitalization. Happened to me several times.

- You might need internet body doubling just for basic self-care (with camera turned off for shower).

- Symptoms can fluctuate back and forth, but the disorder stays.

- You don't feel human in any way at all. You might hate being human. Absolutely hate being human. Even if it's subconscious in nature.

- Almost all foods give you GI problems.

- You are not comfortable in your body nor in many environments on Earth.

- People think you're not happy anywhere but that's not true, you just need very specific conditions to thrive.

- You have very uneven capabilities.

- You nered very specific conditions to thrive.

- You resort to seemingly drastic measures to compensate because there's not enough versatile options.

- The moment your body decides to heal itself, whenever it tries to 'tie the knot', it messes up worse.

My autism is considered low support needs. But my HID feels like it's MSN/HSN (moderate to high support needs).

I am not giving myself disabilities. I am discovering what I already have.

And yet, I persist.