Image description: A gray and white striped cat with light green eyes sits in a black and silver wheelchair, staring fiercely into the camera as if daring anyone to remove him from his personal mobile comfy seat.
Links from this post are included at the top for easy reference. This is not a sponsored post and is for educational purposes only. Please consult a medical professional before making any major changes!
ezlitecruiser.com/pages/details-on-the-deluxe-regular-dx-models
ikea.com/us/en/p/raskog-utility-cart-white-20382932
I called this newsletter Disability Deep Dives, and I intend to deliver! The audio version is about 16 minutes. If that’s too long for you to read or listen to comfortably, the first half talks more generally about chronic illness and the wheelchair I got last year, and the second half gets into specifics like which headrest I chose and how I submitted it to insurance. Please enjoy however much you are interested in or able to!
Chronic illness is a bit of an odd duck in the disability community. A lot of disability advocacy focuses on moving away from the “medical” model towards what is called the “social” model. To borrow Nina Tame’s classic example, there’s nothing wrong with not having two working legs. People can get around perfectly fine using wheelchairs, crutches, and canes, just like people do with bikes, cars, or elevators. The only thing “disabling” about not having two working legs is society’s inaccessibility. There’s nothing keeping a wheelchair user from enjoying a concert, park, or market except things like missing ramps and blocked white lines on disabled parking spaces (most people don’t know that these are used for ramps and should be kept clear!).
This is a generally positive reframe of disability. It places responsibility on the able-bodied world to include everyone, instead of making disabled people beg for consideration. It recognizes that choices like installing stairs instead of ramps aren’t neutral – they deliberately exclude a significant part of the population. Our society chooses to remove some people’s ability to participate for all the usual terrible reasons.
When chronic illness enters the conversation though, things are not so clear-cut. There are a lot of disabling things society does to make my condition worse – such as the fact that doctors don’t do house calls and that insurance doesn’t fully recognize my conditions. BUT. Also. My body doesn’t just function differently – it genuinely functions worse. Worse than the normal very wide spectrum of human functioning. ME/CFS means my mitochondria probably don’t make enough ATP for my body to stay properly fueled. POTS means my autonomic nervous system does not send the correct signals from my brain to my body in response to stimuli. Even if it were totally normal for me to attend concerts lying down in a mobile hospital bed, and I could do it for free, I might not be able to go because I’m having a nervous system shut down.
There isn’t an easy solution to this tension. We can be proud of our identity as disabled people and also want our mitochondria to work a little better. We can fight ableism in all its forms while also looking for treatments to reduce our pain levels. It’s messy. It’s both/and. For such a diverse movement, it’s easy to forget just how different our needs and goals can be as chronically ill people, which is why a lot of people identify as “sick” as well as “disabled.”
And that leads me to:
Wheelchair Shopping
Because my outings are so few and far between (an average of one every week or two), I’ve gotten by for years just using a cane or hiking poles. I’ve used a wheelchair a few times, primarily at places like theme parks where I knew I would be out for many hours. But normal transport chairs don’t give me the support I need. They keep me off my feet, but sitting up for more than a couple of hours without head and neck support causes pain and symptom flare-ups that can last for days afterwards, probably due to some of the connective tissue disorder issues that are often co-morbid with POTS and ME/CFS. Grocery-store scooters are the worst as I have to lean slightly forward to steer and keep my arms outstretched. It’s better than walking and standing, but only barely.
Wheelchairs and scooters in public places mean that people are making an effort to be accessible, and that’s great! But they don’t fit my needs, and because of that, I wasn’t sure any wheelchairs existed that would. There are large, reclining electric wheelchairs, but they’re expensive – more expensive than many cars – and insurance doesn’t always cover them. They also require modified vehicles to transport them in, and they may require adapting a house to make space. Manual wheelchairs, even if they reclined, were a non-starter. It’s not my legs that don’t work, it’s my whole vascular/nervous/energy-producing system, and I had a hard time finding wheelchair reviews online that addressed my specific back and head support needs.
Enter: The EZ-Lite Cruiser
There are several companies that make foldable electric chairs like this one. They fold forward like a stroller vs. side-to-side like a normal foldable wheelchair. Most weigh between 50 and 65 lbs, and they (currently, before tariff increases kick in) cost between $1,800 and $3,500 US dollars. Not cheap, but also not tens of thousands of dollars like many true powerchairs. Other similar brands include Fold&Go and ComfyGo. I heard that Fold&Go is better for heavy outdoor use, but they don't recline, and reports are that their customer service isn't quite as good. ComfyGo is a cheaper alternative with a very similar model to the EZ-Lite Cruiser, as well as one with a longer backrest, automatic recliner, and leg raiser. I almost got that one to compare, but it is heavier and we weren't sure it would fit in our car. That model also doesn't have an adjustable headrest, which ended up being very important for my needs.
The EZ-Lite Cruiser comes in a base and deluxe model. I tested the deluxe because it reclines and has a taller backrest. I added the premium headrest and leg rests, and once I got everything positioned, I tried using it around the house while making breakfast. Normally, I walk the 22 steps from my bed to the kitchen, rush from the fridge to the microwave, and frantically heat up prepared foods while my heart rate climbs higher and higher. Sitting down while things cook doesn’t really help, because getting back up spikes my heart rate even more. By the end of the 5-10 minutes it takes to heat up tea, a microwaveable sausage, and a piece of toast, I am exhausted and end up trapped in bed for the next hour or two. RIP to the many cups of tea that went cold because I forgot about them in the kitchen and was too tired to go back out and get them.
Once I started to use the wheelchair, I realized I didn't have to rush, hunch over the counter like a goblin, or deal with constant heart rate spikes while heating up my food. On good days, I can now make food that requires mixing and pouring and multiple trips between the fridge and the toaster oven. On bad days, I would normally eat bedside snacks, cold foods, or need my spouse to care for me like I’m the duchess of Downton Abbey. Now, I am usually able to heat up my own food and make my way back to bed without making my symptoms worse. Some mornings, I sit in front of the window while my tea steeps, watching the steam curl up and into the sunlight for several minutes, something that never would have been possible before.
Not having to rush from the bed to the kitchen and back – and being able to go back to the other side of the kitchen if I forgot an ingredient or tool – have been delightful tiny luxuries I didn’t know I was missing. It’s also freed up mental space because I don’t have to pre-plan every step of my out-of-bed moments in order to not leave anything in the wrong spot.
We’re still working on finding a table that is the right height for me to work on, but with a few creative Ikea products, we made all my usual items and ingredients accessible, and I’ve been cruising smoothly ever since. For the first several months, it was too hot to take it outside except for a couple doctor’s appointments (which took place on rough days and probably would not have been possible if I’d had to stand and walk), but once it got colder I was able to go on dog walks around the neighborhood and even zoom around our local downtown to Christmas shop independently. I cannot overstate this: the ability to backtrack if I forgot something is an incredible luxury I did not know I was missing.
Now for the specifics (feel free to stop listening or reading here if you’re not in the market for one of these!):
Note: again, this post is not sponsored and I was not compensated for sharing any products mentioned. This post is for educational purposes only and does not replace the advice of medical professionals. Please consult a doctor before making any life changes!
Pros: The EZ-Lite Cruiser folds smoothly, and the leg rests and headrest have a simple detachment system to take them off for transport, though people with low hand strength or arthritis might need an assistive device to help pop the spring-loaded pegs in and out and twist the fasteners. It uses joystick controls which require some dexterity, and they made an add-on joystick that allows a caregiver to drive it while standing behind the chair.
Once the more fragile pieces are detached, the remaining frame is very sturdy and looks like it will hold up even under air travel handling. The company’s customer service has also been excellent. When the reclining mechanism jammed, I texted them a photo, and they called me within a couple of hours and told me how to fix it. They also noticed I hadn’t installed the no-tip wheels and gave me advice on how to add them. The cushion is very comfortable and is 100% cat-approved. The battery lasts 10 miles on a single charge and is airline and cruise-line compatible.
Cons: It took a couple months to ship, and was manufactured in China, so its price may go up. It does not have an automatic recline function, so I have to reach my arm back awkwardly to pinch the mechanism, and someone else has to do it if I want to lay all the way down or else it jams (it's easy to fix if you have enough hand strength). It is also still quite heavy, even though it’s one of the lightest weight electric folding options at 55 lbs. I can do very short bursts of exertion, so I can help my spouse lift it when folded, but it takes a second person or a ramp for me to get it into a vehicle or up and down stairs (I’ve heard dog ramps and wheelchair jack lifts work well, but I haven’t tried them yet). I also haven’t felt comfortable taking a lyft or uber with it as I would need the driver’s help to get it in and out of the trunk.
Premium Headrest: This add-on is essentially what makes the chair work for me. Standard neck pillows or head rests that just support the back of the head don't give me the support I need. Something has to be sitting under the base of my skull and taking the weight of my head to avoid pain and flare-ups later. The premium headrest does the trick and is easy to move to different positions when reclining at different angles. I also push it all the way down to support my shoulders and upper back when I need to sit up to steer. It takes some work to get into position, but it’s very customizable and easy to adjust once it’s in place. I do have to reach up and over my head to move it while in the chair.
Premium Leg Rests: I use these when I am going to be seated for a long time. They make the turning radius much larger and are a little wobbly. They also don't extend far enough or raise up high enough to fully prevent blood from pooling in my legs, so I usually lift them and put my feet on the calf cushion part so my knees are bent. This is similar to how I sit in bed, so it works for me. Because they are so bulky, I usually leave them off for making breakfast or going to doctor’s appointments and just prop my feet up on the edge of the closed built-in footrest when I'm not moving. This bends my knees enough to keep blood from pooling for short periods. But for home use or a longer, more casual outing with stops I would definitely include them as they are easy to pop on and off.
Insurance: I was able to get the purchase reimbursed by Blue Cross/Blue Shield as an out-of-network purchase, but it took a fair bit of time and effort. First, I had to submit a letter of medical necessity from my doctor to show that a manual wheelchair would not be sufficient. I drafted the letter based on one from the site HowToGetOn.Wordpress.Com which has a lot of useful information about how to navigate disability benefits.
Note: insurance reps will NOT tell you all the things you need to include in this letter in order to get approved. The samples on How To Get On cover the most important things, especially that the wheelchair is needed in the home and will help with “Mobility Related Activities of Daily Living” (MR-ADUs) such as hygiene, cooking, and chores. This was enough for insurance to approve the medical necessity, but because wheelchairs are often purchased under a rent-to-own model, they processed the claim as a rental rather than a purchase. This made the “allowed amount” they would cover very low, around $300 instead of $3000.
Because nobody would explain how to get a purchase approved over the phone, I turned to my new secret weapon: the “medical guidelines for durable medical equipment” PDF. You can typically find these documents, intended for providers, by searching your insurance name plus “medical guidelines wheelchairs” or whatever service you’re looking for. These are long documents with the specific requirements that must be met. In that document, I found a note saying that wheelchairs must be rented instead of purchased if they are going to be used for less than 6 months. I filed a second appeal after 6 months had passed saying that I was still using it, along with an addendum from my doctor stating that I would need it for more than 6 months, and it was almost immediately approved. I recommend searching for your insurance’s version of that document before you submit a prior authorization or letter of medical necessity to see if there are any additional hoops you need to jump through, and make sure you include them in your original letter of medical necessity.
Alternatives to the EZ-lite Cruiser
Motorized wheels, add-on batteries, and drive assists are now available for many manual wheelchairs. If you’re able to sit up without much support and just need a lower-energy mode of wheeled transportation, those might fit the bill. They don’t solve my problems of needing a higher backrest and the ability to recline, but they might help others. The wheelchair subreddit (reddit.com/wheelchair) has many useful reviews.
At some point, I may need a custom powerchair, but in the meantime, this has given me so many tiny freedoms and hope for larger ones. If I do get a custom one in the future, I can still see using this one for travel or flying since airlines are notorious for breaking expensive chairs. They won't work for everyone, but if you are ambulatory and have similar reclining/head support needs due to chronic illness, there's a good chance you can make it fit. Honestly, as nice as it is for mobility, it’s also amazing to know that no matter where I go, I’ll have a place to sit that won’t strain my neck or increase my pain levels. This alone dramatically increases the amount of time I can sit up and participate in activities.
Local wheelchair sales centers may have similar models to try, and the EZ-Lite Cruiser has a risk-free trial period (though you will almost certainly need another person to get it unpacked and repacked in its shipping crate).
Final thought: accessibility improves life for everyone. Whether we have standard mobility needs or not, we all deserve freedom and support. I hope products like this help more of us get where we need to go – and that mobility technology and coverage keep improving for all of us.
Our community discussion post next week will be about our favorite mobility aids and imagining what our perfect assistive devices would look like. Be thinking about what you’d like to share!
Be well friends! <3
