Hi everyone! I recently asked my Instagram community–which includes many of you–if they would be willing to crowdsource ideas around disability centered topics so that I could share here on the blog, for the benefit of everyone. If you’d like to be included on future crowdsourced ideas be sure to follow me over at ThisLittleMiggy on Instagram. Also, please, please, please leave more of your ideas and solutions and even questions in the comments below so we can continue to help each other out!
The first topic is: What are your best tips, tricks and advice for Wheelchair users and parents of children who are wheelchair users? This could be anything from “an easy way ro clean mud off your wheels” to :we found this product or tool that has been very helpful” and anything in between!
I’m going to start with our family’s best tip that has been really helpful both for Lamp and us.
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We use a Osprey Hydration backpack (pictured above) that hangs on the back of Lamp’s chair so that she has independant access to water whenever she needs it. Because there is a long straw that drops down on the side, she is able to reach back and hook her arm around it, and then bring the straw to her mouth. This has been particularly helpful at school this past year as the kids must bring their own waterbottles instead of using communal drinking fountains. Since Lamp can’t just grab a waterbottle from her backpack, and it’s a clumsy process in many ways to ask an aid/parent/friend to reach into your backpack to grab your water bottle and help you take a drink, we have found this solution to be really, really helpful. While we used it in the past for roadtrips and such, we have basically started keeping it on her chair full time. Additionally, it’s helpful for us as parents and caregivers as we only have to fill it up about once a day. FYI, we do order extra silicon nozzels for the bite valve to keep on hand as they start to leak after a while.
Here are some more awesome insights and ideas from all of you about wheelchairs. Keep in mind that what works for one person or family, may not work for everyone–please be kind in your comments and suggestions. Also, these suggestions and ideas will differ widely for manual wheelchair users, vs. power wheelchair users, therefore I made sure to ask everyone to differenetiate between the two.
Community Responses:
Autumn–manuel wheelchair user
I’m a wheelchair user and also a photographer. I’ve recently added a stroller umbrella holder onto my chair that I can hook a small monopod (tripod but only 1 leg) on to my chair so I can film/photograph while using my chair!
Kathleen, Floral Park, N–power wheelchair user
Learn how to instruct someone how to put your chair on manual so if you run out of battery when you’re out alone (hello, college!) you can get help!
Nicole, Mesa, AZ–parent of a child who is a power wheelchair user
1. Stiffy brush for cleaning muddy wheels
2. Cordless air duster for cleaning dust
3. Replace regular springs with heavy duty ones on minivan to support electronic wheelchair lift on back 😱
Katherine, Los Angelas, CA–manual wheelchair user
When getting fitted for your first (or a new) chair, if at all possible have another chair user fit you. People with experience know what you do or do not need, and know the importance of having a chair that fits like a glove.
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image from GoFreewheel.com
Alison, Toronto, CA–manual wheelchair user
–The freewheel. It’s worth the $$ out of pocket for the absolute freedom and stability.
–Always having two seat covers and opting for something semi waterproof (accidents or when it rains).
–Side guards that are hard and go over top of the wheel. I can weight-bear when transfering (but im under 70lbs), and they keep clothes MUCH cleaner than straight side guards.
–I have high pressure wheels but they are mostly puncture proof. Many less flat tires. Pumping up to max frequently is important (I often let it go too long).
–Having other wheelchair users involved in a fitting/decision making about a new chair is life changing. No one knows better about function than a wheelchair user. I advise all parents to find an adult wheelchair user if their OT, stea tech are not disabled themselves.
Stephanie, Ontario Canada–power wheelchair user
For phones, I LOVE a gooseneck phone holder! Can be clamped to an arm or anywhere on the chair and is great for ppl with weakness! Any cheap version works, but if you’ve got the means – MOGO Mounting Solutions in the states has an amazing system!
Grace–pediatric physical therapist
Ponchos! So many of my patients benefit from the ease of a poncho (fleece or even waterproof) during winter months. Quick and easy on/off plus you can cover the chair if oversized enough. One cutie got a custom one this year with her name embroidered 🙂
Beth, Southwest England–power and manuel wheelchair user
I use a power and manual chair depending on what’s happening. For purely aesthetics look up spoke skins. Made me feel so much more confident in my manual chair when I had rainbow wheels.
Kim–parent of a child who is a manual wheelchair user
–For first and second chairs – ask for light up front wheels… We also recently decorated the spokes with spoke skins from Amazon and it’s been a fun addition.
–I also would recommend, on a more emotional level, keeping your attitude about the chair neutral or positive. My daughter is a part time chair user and I never want her to feel like her needing the chair is negative. She gets options on when to use it. It’s part of her and she loves it.
Victoria, North Carolina–parent of a child who is a powerchair user
Look into efix for an option of a manual chair with power mobility!
Anna-Marie, Cardiff UK–parent of a child who is a manual wheelchair user
My 6 year old uses a Swifty adapted buggy. We have found that the io buggypod works perfectly with it to convert it to a double so I can get out and about by myself with baby and big brother at the same time. Suitable once baby was 6 months. Bought ours second hand for around £100 [Euro].
Lastly, there was one question I posted from a specific reader who is a new wheelchair user. This is her question with an answer from Erin below.
Reader Response + Question:
“I’m COMPLETELY new to my chair despote having it for about a year now. I still have no clude what I’m doing and wish it came with a full access manual. I’m so lost…I wasn’t “taught” how to use a manaual wheelchair so I don’t even know [if] I do it right. I’m trying to work, and have a pvery part time job as a tour guide for Ghoset Hunts and the tour path is an unpaved gravel park path. Lots of grass. When it’s rained I get stuck in the gravel and mud and get dirty. Also, very inaccessibel wieh curbs, steep ramps, uneven paths besides the rest of the issues. I come hope from just an hour long tour and feel horrible with black and blue hands, dirty, so much pain from pushing through it all…. I can’t afford a freewheel, or spinergy wheels, or a smart drive…”
Erin–manual wheelchair user
In response to the person in your stories, I wanted to shout out that muddy, gravelly and wet grass terrain is the worst. Getting dirty and bruised trying to navigate that is to be expected to some extent. Some gloves can help with grip on slick rims, and when something like a freewheel isn’t an option, moving backwards so the bigger wheels go first (sometimes I use my wheelchair like a walker, holding on to the frame and crawling or lumbering to push it ahead of me, but you can sit and pull the wheels to roll backward. The bigger wheels are better suited to navigate rough or wet terrain so it’s effectively like using a free wheel.) this won’t help with being exhausted as that’s how inaccessible terrain feels. I did want to add something more general, though. The idea of “using it right.” It’s YOUR body. Having to go through a series of assessments and medical professionals to get a wheelchair can make it feel like something they own and govern. And because it’s new to you, it’s normal to need and want advice — and the connection with other wheelchair users that comes with that. I hope that you get a LOT of practical advice and tips, now and whenever you need them. But regardless of how much you have to learn, don’t leave out your own expertise as you learn, explore and work things out that work for you. You get to decide the ‘right’ way to use your chair.
Thanks everyone who sent in an ideas, suggestions and advice!
If you can think of anything else that would be helpful to know please post below!
To the new WC user: some thoughts – there are good videos from the University of Washington SCI network on YouTube – google Wheelchair handling skills to add techniques for handling inaccessible terrain in a manual chair. Gravel or other loose surfaces are not friendly to WCs so perhaps your employer could put you on different parts of the tour that are not on gravel or grass? Larger tires are better for loose materials as well so perhaps you can ask your medical professionals about getting fatter front or rear tires. Gloves and good rain gear are also helpful for keeping hands, forearms and hips cleaner. I carry extra paper towel in a pack to dry off my hands frequently. Thinking of you as you make this adjustment. It really takes loads more training that anyone thinks it does!
I’m psyched my comment was featured! I’m totally fangirling! There are some amazing tips on here. Thank you so much for compiling this resource.
P.S. I’m totally checking out that stiffy brush!