Mo

Reporting on Disability Advocacy, Products, and Inclusion!

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My Custom Wheelchair Makes Life Beautiful

klI have owned a custom wheelchair for a year now, as a part time user. Using my chair for long distances has changed meaning a bit over the year. At the start, I was using it for longer grocery store trips, and of course bigger events like the aquarium or a theme park. As I worked hard in physical therapy, I stopped needing mobility aids for short distances, anything under ~30 min was doable. I was even able to take a couple big trips without an aid, and I had started walking ~30 min each day. Unfortunately, FND had to rear it's head, and chronic leg pain and occasional tremors/buckling occur now. Fortunately, I already have a lovely wheelchair made just fo rme!

Wheeling myself around is quite a workout on the shoulders, but the muscle pain is nothing compared to the sensations in my leg from walking. I feel as if I am actually able to enjoy ljife from my chair, because I'm not focusing on making it through the pain. I can notice so many more flowers, smells, enjoy the sunlight a little more. The term "wheelchair bound" really bothers me, as my wheelchair gives me the mobility I miss out on under different circumstances.

Now, I'm going to (do my best and) tell you all the brands on my chair. The frame, wheels and brakes, seat, and back, are all from different brands. The frame is from APEX, the wheels and brakes are from NEWTON, push rims are The Natural-Fit, the seat cushion is Jay Fusion, and the back rest is Optima (I think these are right, being a mobility aid user is like being an advertisement for the mobility company, so the branding is all over). I also have a power assist from Smart Drive.

My wheelchair is fairly light, especially if you disassemble it and carry just the frame or just the cushion. The heaviest parts of my wheelchair are my Smart Drive Power Assist, my cushion, and the frame. The wheels are awkward, but not too heavy for me. The backrest is fairly light as well, which is nice. The cushion is removeable (as are most things on the chair), and I take it with me in cars to help with my pain, as the shaking from car seats can hurt my leg(s).

The Smart Drive power assist is a helpful tool for pushing yourself. It can drive you on flat surfaces, gives you extra weight for downhills, and can give you a little extra boost when you're going up hills. There is even an app that allows you to adjust the speed a bit (However, it is extremely slow no matter what setting you pick, I'm speedier with my arms but I'm SO grateful for the help when I need it.)!!

I had an Amazon DRIVE wheelchair for a while before I got my custom one. It got the job done, but not well. A custom chair has allowed me to live my life comfortably, and encouraged me to leave the house more often than I would if I was trying to walk, or using my old wheelchair. If you can afford a custom chair, if your insurance covers it, if you feel you need one, I encourage you to do so! Mobility aids are a journey and it's okay to try one out, even if it ends up not suiting your needs! And remember kids, most people don't *want* to be in a wheelchair-it makes life more difficult because things are rarely made with us in mind. If you *want* a wheelchair, you probably need one. You don't have to ask, "Can I use this for pain/exhaustion/fall risk/etc. issues?" The answer is do whatever you want forever! If you try a chair and it ends up not being the mobility aid for you, see if there is someone nearby with similar measurments that you could maybe donate it to! Or, if you have a progressive/degenerative condition, you could keep it for when/if you grow to need it.

[inclusivityreports]

Why Fake-Claiming is Wrong and Bad

Fake-claiming, a concept, but not a word, known by many. Ever see someone in a wheelchair move their leg(s) and think, "They're faking being disabled!" If this happens to you, you're probably normal about this likely intrusive thought. You shake it away and think, "Well they're probably using it because they need it, and it's not my business." Some people, however, like to post their opinions to the world about who is faking what and why. This is called fake-claiming.

There is even a rather popular subreddit called r/fakedisordercringe (Hi guys!), where they post videos of people raising awareness about their conditions. The rules of the reddit say that you must have a reason as to why you think the person is faking, but most the reasons I've read are actually symptoms of the disorder, or common presentations of it, or even an uncommon but still heard of presentation. It's like they don't google or crowdsource or verify information. A lot of their targets are members of the LGBT+ community, or are alternative. The idea that someone would change their appearance in a way that gains attention, when they already have a disability, is so outlandish to this subreddit that people get accused of faking the disorder. Some common disorders that are fake-claimed are DID/OSDD, Tourette Syndrome, Functional Neurological Disorder, and other movement disorders or dynamic disabilities (where the person's capabilities change day to day).

Now, why fake-claiming is wrong and bad! First and foremost, if you are not their doctor, you have no say! Secondly, many, if not all, disorders exist on a spectrum. Some people with Spina Bifeda don't know they have it their whole lives! Saying someone is faking because they have a mild, extreme, or fluctuating illness does not make any sense. When one person gets called fake for having an inhuman alter in DID/OSDD, suddenly everyone with an inhuman alter is being questioned. If someone gets called fake for having self injurious tics, suddenly everyone with those tics is being questioned. If one person's Functional Seizure looks too different from an Epileptic Seizure, or another person's Functional Seizure, they get fake-claimed. When both FND and Epilepsy can cause seizures that look all sorts of ways.

People think they're doing good by saying, "This person is faking because of these reasons, and they're doing harm to the disability community!" But fake-claiming is honestly doing *more* harm to the community because it spreads seeds of doubt about our very existence.

[inclusivityreports]

Loop Switch Product Review - Non Sponsored

Loop Earplugs are a sensory friendly motivated brand, made to help protect hearing and sanity. With numerous options for sound blocking, including Engage, Experience, and Quiet. Each earplug is made with a different purpose in mind - The namesake. Engage is an earplug designed to reduce background noise while keeping what matters at an appropriate volume. The Experience earplug reduces all noise, while still keeping everything audible. Quiet is the highest level of sound blocking available from Loop. You may be asking, "how can I choose?!" Well, Loop's website is designed to help you pick! As well as in depth descriptions and reviews on each product, there is a test that will determine which sound aid will help you the best.

Still can't choose? My recommendation is Loop Switch! This is an earbud designed with all three previously mentioned levels of sound blocking. A slider on the side of the device that allows you to... switch... between sound blocking! Three circles along the slider, one open, one half filled in, and one closed-to symbolize the Engage, Experience, and Quiet modes, respectively. My favorite modes to use are Engage and Quiet.

Engage is named well, it does make me feel much more present in my environment, without the distractions of the busy café I'm writing from. The workers washing the dishes is no longer a harsh hose of water, but a dull roar of an ocean. There is foot traffic and busy talk, but feels like a background TV show compared to my current focus.

Experience is my least favorite. While it does work at muffling overall noise and still letting you remain aware of your environment, I find that I can hear my breathing exceptionally well on this mode, and it ends up making me anxious after a while. This may be a mode better suited for people who work in noisy environments but still need to hear everything, like transportation or factory work.

Quiet is my second favorite, like being teleported into your own world. External noise may leak through, but it feels as if the sound is from a dream, or as if you are in a dream. This is the mode I use when I am most overwhelmed, or need to focus without any distractions at all.

Loop earplugs are an exceptional device to protect hearing from harsh, loud sounds, and to protect peace of mind from repetitive, high-pitched sounds. They are comfortable and easy to wash, and they come in a cute little circular carrying case. The earbuds are labeled right and left ear to ensure they are being used correctly.

[inclusivityreports]

Pain Poetry

Twisting, writhing pain,

Hugging, cradling away,

A hammer in my veins,

A drill bit to decay,

My brittle bones betray.

Can't you hold any weight?

Can't you work 'til late?

Can't you just obey?

Why, why, why, must I be in pain?

[inclusivityreports]

Disability access and product reviews

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Functional Neurological Disorder

Now this is a big condition to be tackling, with a vast amount of names, misconceptions, and misdiagnoses. Functional Neurological Disorder, or FND, presents different symptoms. It is the second most common reason for outpatient neurology visits, after headaches. Single presentation FND is the most common, meaning you have one Functional Symptom. Multi presentation FND is when you have more than two Functional Symptoms. FND may present as seizures, paralysis, dystonia, gait issues, aphasia, stutter, tics, hallucinations, sight loss, hearing difficulty, pain, and more.

The history of Functional Neurological Disorder is not bright; being labeled under psychiatric titles like Conversion Disorder, or Hysteria. This disorder is thought to be part of the cause behind The Dancing Plague of 1518, which could be a whole post by itself (I’m totally writing about that oh my goodness!)!

Neurology is the study of the nervous system, the study of how the brain and body communicate with each other. In many neurological disorders you can see evidence on MRIs, CT scans, or EEGs. FND can be seen on FMRIs, a Functional MRI, which shows where blood flow is going to the brain. This means there is no structural damage or electrical activities causing the symptoms. Rather than the malfunction being in the brain or body, there is a miscommunication in the nervous system. The brain may send a signal for the leg to move, and the body may receive that signal as pain, tremors, or not at all! It’s like a kinked hose, the faucet is working, and the bucket is structurally sound, but somewhere along the line, the water is getting interrupted or disarrayed.

Many neurological movement disorders worsen with stress, and disappear or lessen in sleep. Providers that say that FND is purely a stress disorder are basing their medical opinion on outdated terminology and information. FND is a disorder of the nervous system, which also manages stress. Going back to the kinked hose analogy, lets remember that most disorders and disabilities have both genetic and environmental factors, and say that some hoses are very thin, weak, or pliable, prior to ever experiencing a stressor. For a normal, strong hose, a stressor may dampen the water pressure a bit, or stop the flow for a moment. But with a hose predisposed to bending or leaking? A stressor could cause the hose to spray erratically, or stop flowing at all.

Now, there are many, many conditions that FND can copy or mimic. FND used to be a diagnosis of exclusion, which lead many to feel as if it is a “throw away” and “last resort” diagnosis. However, there are positive testing traits for FND. Multiple doctors should always be visited for diagnosis, as many mental health symptoms can be hormone imbalances, vitamin deficiencies, or physical health issues. A good neurologist will know what to look for!

[inclusivityreports]

Zenni Optical Review - Non Sponsored

Zenni Optical is an online prescription glasses website that I have been using for years and years. They are relatively cheap, and delivery is pleasantly fast. Bad eyesight is an overlooked disability, it's so common for people to use and rely on glasses, it's even fashionable! Growing up, I was always told how expensive prescription sunglasses were. Zenni Optical has made my photosensitivity affordable and cute! On top of normal glasses, sunglasses, and blue light glasses, they also sell safety glasses! I worked in a clean room that required safety glasses and I bought many pairs from Zenni because of how reliable they are with their products and delivery.

Every pair of glasses you order comes in a case with a microfiber cloth for cleaning. The case is sleek and sturdy, and the color changes sometimes if Zenni is doing an event! The microfiber cloth is a good size, not too small, so it's easy to handle. It has designs and advertisements on it.

This website has plenty of styles and lens choices to make your glasses feel like you, which is so important in disability aids! Zenni has round, geometric, square, cat eye, tortoise shell, and more frame shapes, with many options for lens customization, and over 15 classic color choices for sunglasses.

I use a silver geometric framed, pink tinted lens, to help me with my photosensitivity! It has made life easier and much more enjoyable! Living life with less neurological symptoms from light sensitivity is a wonder, and it came at such an affordable price, compared to buying glasses in store!

[inclusivityreports]

Smart Crutch Product Review -Non Sponsored-

As someone with Ehlers Danlos Syndrome and Functional Neurological Disorder, forearm crutches help me out a lot! Compared to traditional crutches, which rest in the armpit and can cause pinching, forearm crutches rest on your arm(s) below your elbow. There are many brands which carry forearm crutches, but this review will be exclusively about Smart Crutches!

Smart Crutches are highly adjustable, customizable, and fashionable. Using a mobility aid can feel scary, and being able to pick the color and design can make you feel more confident in your comfort! Coming in two height sizes, which is further customizable after purchase, Smart Crutches also have adjustable handle lengths, and adjustable forearm platform angles. There are over 30 different design choices for the graphic on the top of the crutch, including fantasy, nature, zebra stripes, and racing stripes. My crutches have ocean waves on them, and the graphic has held up very well over the years!

I have been a proud owner of Smart Crutches for about three years now, and they have not broken, needed extreme adjustments, or faded/dented at all. I use my crutches for hiking as well as walking around town, and they give me the mobility and stability I need to move with confidence.

One con that people may point out, is the price. These crutches cost about $240, compared to traditional forearm crutches which average about $40. There are other forearm crutch brands that cost similar to the Smart Crutch. With how customizable these crutches are, I 100% think that they are worth the money.

[inclusivityreports]

Flare Audio Calmer Review

-Non Sponsored-

Flare audio's Calmer product is designed to dull noise, not deafen it. This means it does not look or work like an ordinary earplug! Though, Flare does sell earplugs, earphones, and other audio products made for listening to music or protecting your ears! Calmer works by reducing how many times sound waves bounce around your ear canal, softening the blow on your eardrums. Calmer has a few different variations, such as Calmer Extra (increased sound reduction), and Calmer Pro (different decibel blocking for stress relief). There are also versions with softer silicone, or smaller sizes for children and people with smaller ears.

I have had my Calmer product(s) for a few years at this point, and they have held up fantastically! I own Calmer Outlet (the first version of Calmer, made with more firm silicone), and Calmer Pro. The packaging was environmentally friendly and conscious, and came with information sheets on how your product works! A little black Flare pouch is included to hold your Calmer product while not in use. Cleaning is simple, just make sure you plug your drain! You don't want to lose an item this good. A little bit of body and silicone safe soap, and some warm water, pat them dry, and you're good to pop Calmer into your ears and live life with less stress!

Calmer helps me by reducing the higher pitched noises, which helps me focus on what I need to and not get overwhelmed by stressors. Do you have Autism, Misophonia, Tinnitus, or love rocking out to loud music? Calmer could help! Dull the chewing, muffle the electricity, calm the hum, protect your ears! Flare as a whole is passionate about what they make, who they make it for, and why! Protecting hearing, preventing stress, and making noise mean something beautiful.