I sometimes used a single‐point walking stick in the late 2000s / early 2010s. It could be hard to aim and angle, but helped a bit on occassions when I was fatigued or sore but otherwise easily ambulant and alright with my hands.
I trialled two different length‐adjustable four‐point walking sticks in March 2021, as possible helps for transfers between wheelchair and toilet/shower/bed/etc. They both felt wonky (albeit in different ways), and I couldn’t be sure if either would be beneficial.
Around February 2021, I hired a “ball walker frame”. It was shaky and dangerous no matter how it was set up or used. So I discussed it with / demonstrated it to my O.T., then returned the walker at the earliest opportunity.
From early 2021, most times I shower I take a Breezy everyday bath stool with fixed back in with me. It is not always enough, but I love it!! It has increased the circumstances in which I can bathe.
When positioned appropriately: it has a good grip on the floor; the structure remains very supportive, sat on or leaned on in a variety of ways; and getting in or out of the seat intentionally is relatively easy. The wide, curved shape discourages falls and there is plenty of grababble edge (in addition to three handle hollows) for extra support. Its lightness has been a relief, as I need to shift it around the bathroom many times each week.
Because it is hard to get my wheelchair into the bathroom, sometimes I use the bath stool to prop me up while I am at the sink. It has also stood in brilliantly for hand‐rails at the toilet; however; the need to lift the bath stool across the room (and myself) or otherwise block the doorway makes these last uses too impractical for a regular strategy.
Sits around the toilet to provide arm supports. Tried late 2020 or early 2021. Wobbles. Restricts movement (everything from feet to hands). So, unfortunately only made things harder. Can turn ordinary seats into armchairs, though, so I suppose that could be something.
I have needed a wheelchair since the mid‐late 2000s. I have had one (an inappropriate one) since the mid 2010s.
For detail, please refer to Wheelchair Trials, in conjunction with Wheelchair‐Related Tools, below.
I mostly live out of one, schoolbag‐sized shoulder bag. Since January 2021, I have supplemented this with a bum bag for shorter periods in which I do not need the whole lot. The latter has a very long strap, so I can loop it around a rigid wheelch seat or sling it across my chest. Both bags are relatively easy to carry on my bike, but very difficult to hold from my (non‐rigid) wheelchair. This is mostly a non‐rigid‐wheelchair problem. It will be important to keep in mind, though! I may need to be prepared to change bags or hesitate before committing to certain frame geometry.
In May 2021, I tried an Advantage Bag Company Catch‐All Too mesh net at a couple of different heights beneath a court sports chair seat. This seemed awkward, but the general idea is certainly an improvement on hanging straps across back canes or wedging bags into the undercarriage directly.
Some jobs require extra equipment or are about, say, carting goods somewhere (eg field‐recording, shopping, and moving objects around home or workplace). Again, this has been doable on my bike or when I have been able to walk easily, but not in the old wheelch (unless I play trolley, pushed by somebody else).
Straps and harnesses
Last time I flew anywhere, the airline provided a simple trunk harness to help me hold myself up in the seat. It was AMAZING. (I’m afraid the only literature I remember seeing on these was in Japanese, but they are definitely a Thing worldwide… just under‐utilised/‐advertised. Anyway, I must find references to point at so you all know exactly what this raving’s about.)
I have used a couple of sorts of lap/foot/etc belts in sports wheelchairs. Certain Mobility Plus (I think?) ones, awkward friction‐based things, have been a pain — hardly staying done up at all, for which my game and general wellbeing both suffered. But those on the Motivation Multisport, simple velcro straps, have also been AMAZING.
In 2019, I compared a sports chair with and without spoke guards. They made it in some ways harder to grip the wheels, but did prevent some harm. Zip ties for holding them on were awful. In concert with quad‐friendlier pushrims and gloves, I suspect the benefits of a carefully chosen set of spoke guards and pliant, reusable fixings would outweigh the awkwardness.
In May 2021, I tried Push Mobility Push Hubs spoke guards, which affix with velcro loops. Once I got the hang of it, they were much easier to get on, off, or adjusted than zip‐tied guards and more comfortable in use. Their decorative designs are lovely and cheery, too!
Throughout the 2010s, my main mobility aid was a folding bicycle.
A sturdy bike allowed me to cover reasonable distances (from tens of metres to tens of kilometres) around town, quickly enough to get between safer places in time to minimise risk. Being very compact and quick to fold and unfold, my bike enabled me to catch buses and trams as needed.
At low speeds and indoors (such as at the supermarket or along corridors en route to gigs), I used the bike as a kind of walker. Of course it was much too long for moving around at home or in cramped or crowded public spaces, so most places I could not usually access in this way.
As my condition deteriorated, I had to make substantial modifications to the bike to keep riding it. These progressive changes encompassed pedals (MKS Ezy Superior Lambda proved brilliant for wayward feet), cranks (child‐short to facilitate pedalling), handlebars (replacement of soft grips with gaffer tape to increase tactile feedback and decrease hand/wrist injury), wheels (smaller, all‐terrainnier, more versatile), gearing (needed lower and to introduce a range), brakes (need stronger, more reliable ones), and more. Even so, by 2021 I could no longer use it well/safely as a walker, and the times I could ride it continued to diminish faster than I could afford to make necessary modifications.
In June 2021, I trialled a 1.2m‐long folding metal ramp. It was a lot like the ramps on Melbourne metro trains. Rolling along this was much better than tackling a bare drop, when not feeling well, but I would not be able to set this ramp up or move it away by myself regularly. The ramp juts high enough above the step to obstruct most doors from swinging open or closed across it, so could not be left in place in such locations. It could be an appropriate solution for doorways that open away from a step, for outdoor ledges, and for travelling/visiting inaccessible environments.
Computerised stenography requires much less dexterity, in my experience, than typing or handwriting, and usually remains practicable for longer than speech does when paralysis is setting in.
I have touched previously on some practical considerations regarding stenography in Typing Computers Better.
From the early days (circa 2009?) of Mirabai Knight’s Plover initiative (now, more broadly, the Open Steno Project), I occasionally trialled (non‐functional) chording techniques and so‐called arpeggiated mode, on QWERTY keyboards. It was many years before I could both successfully run the actual Plover software in a real‐world–usage environment, and interact with it through hardware that would allow true stenographic chords. Nevertheless, it was obvious from the beginning that this technology would be transformative. The motions were much simpler and took less work than conventional, serial typing.
Plover is excellent these days for monolingual desktop computing. However, swapping between language variants is clumsy and tedious — especially with motor impairments! As of July 2021, it cannot run on mobile phones or in TTY‐like text consoles, both of which I would love to operate through stenography.
I found it inefficient to learn to use other people’s stenography theories, which behaved in ways counterintuitive to my own relationship to language. This is something complex to thoroughly remedy. Late 2020, I started compiling my own stenography dictionaries from scratch, which proved far more rewarding and usable for me than modifying somebody else’s ad hoc.
From mid‐2019, after I had obtained a computer keyboard (ErgoDox) able to transmit chords, I gradually started to practice stenography itself and adapt it into my own life. For someone who grew up accustomed to touchtyping at 100+ wpm, the extremely heavy springs (which my tremulous hands now desperately needed, to ward off typos, for systems like QWERTY and Dvorak) in this keyboard kept my stenography input shockingly slow and tiring. But I was also someone who could barely type at all anymore! Stenography was clearly easier in comparison, except there was so much vocabulary to develop before I could put the technique to much use.
By November 2020, I had my first stenography‐specific keyboard, a g Heavy Georgi. It had unfortunately shipped damaged and my capacity to keep up with my correspondence needs had diminished too much to finish organising replacement/repair.
In 2021, I have been using a SOFT/HRUF Splitography occasionally; when I can sit at a desk. Then, it is pretty great! However, due to its form, it is not generally possible to set up the Splitography when I am in other positions/locations, and it is impractical to carry with me.
In May 2021, I began using the more contained, single slab of a Stenomod Quiet TinyMod4 (some of the time) when bed-bound. Its keys require less force to operate than the rather stiff Splitography; however, the layout is a little cramped. Being able to swap occasionally between the Quiet TinyMod and the Splitography offers some relief, exchanging one’s kind of tiringness for the other’s. Being a one‐piece unit, the TinyMod is much simpler to schlep around, for everyday communication. It might be the most immediately practical of the passive stenography keyboards currently available.
In July 2021, I changed some of the TinyMod’s keycaps for ErgoDox ones, to permit a slightly more comfortable handshape. Rectangular tops for the vowels allow my thumbs to activate the keyswitches from further back, somewhat relaxing the entire hand. I also found that changing to lower or higher caps on the central keys would reduce the incidence of wrongly positioned fingers; however, none of my square keycaps I poached for this experiment were flat enough to engage comfortably.
More customised or stand‐alone set‐ups — for in‐community use in the vein of the prototypical Stenosaurus — would be well worth trying for. This could be possible through rewriting some software and getting the Georgi fixed.
When I cannot speak, my loved ones or bystanders and I rely heavily on slow, clumsy fingerspelling and a tiny vocabulary of signs. I also communicate some stuff to my dog by signing.
Since December 2019, I have been keeping a tiny Ohto minimo mechanical pencil in my wallet or notebook. Compared to random writing tools one might be able to borrow when out and about, it is less challenging to control. This is due both to the way that a mechanical pencil lead moves on the page, and how the minimo can be stabilised from multiple angles at once by more of my hand than a typical full‐sized pen(cil) can. However, this device is only suited to short bursts of use and pretty small writing.
Based on experiences with the minimo and with hexagonal‐barrelled implements, I decided to try a nice chunky clutch pencil for drawing and highlighting. The chance came in July 2021, with a Kaweco Sketch Up 5.6. It is looking good so far.
Fountain pens are much easier for me to write with than biros. I have been depending on fountain pens for most of my written communication since the late 2000s. A very narrow nib helps keep my wonky lines from turning into illegible blobs too easily.
For several years, I wrote mainly with discontinued cheapies from Platignum. This mystery model was top‐heavy, with a slippery enamelled barrel — which could make angling the rather vulnerable nib a challenge. But it traversed the page in a predictable manner and travelled well (until pen‐borrowing acquaintances would inevitably destroy the nib).
Come the mid-late 2010s, I found a squareish aluminium Lamy pen (AL‐Star) particularly good for maintaining a dependable grip. Unfortunately, in March 2021, mine was dropped on my wheelchair (due to lack of accessible storage possible on/in the Karma Ergo Lite 2) and snapped when I unwittingly sat on it. So I became penless againless.
In April 2021, I started using a Kaweco Liliput with a ribbed body. It is small but weighty and stays put in my hand pretty well. The nib, sized medium, was difficult for me to write clearly with, so I fitted a finer one (“extra fine”, even) to better result. Additionally, either end of the body can work as a laptop pointer.
I am mostly (doing my best at) using standard cutlery, which is sometimes a struggle or impossible.
An Etac Light combination knife/fork, left hand is, for many things, a bit easier. It is really well balanced, although the chunkiness of the handle can be difficult for me to reach around.
[Occupational Therapist] has suggested that a light‐weight camping set could be helpful.
Does not need to be held from as high to pour, nor filled with much water to use (minimum one cup versus usual minimum of four). The waterline and bubbliness being readily visible from virtually all angles in a Breville the Compact Kettle Clear (BKE395) has further helped me to correct tilt much more accurately and safely than I could previously.
Touchscreen interfaces are extremely difficult for me. It has become very common for people and institutions to insist on the use of them. Styli up my odds of a clean poke to the correct spot. On my laptop, this helps me skip over some of the struggle involved in moving the mouse cursor. On a modern mobile phone or consumer tablet, it is essential.
For a while in the 2010s, I used a type of stylus which consisted of a narrow plastic cylinder and a pliant, hemispherical tip. This was the Targus something‐or‐other. It made a big difference for operating mobile phone touch screens, although the big blob of the end could be hard to see around, impeding precision. Unfortunately, without a decent clip or loop, the something‐or‐other went missing easily and could be hard to hang onto during breaks. Eventually, the tip worked itself off and wouldn’t fit back in.
[Support Co‐ordinator] organised its replacement in June 2021 with (what happened to be) the same product, in a substantially smaller size. I find it hard to hang on to, and that — due to the awkward grip and the shaft’s being so light — the whole stylus often flicks off in random directions. Off‐gassing from the coated tip bothers me more than it used to, too. Still, this model makes a helpful back‐up. For example, if I use a smartwatch‐based personal alarm, keeping one of these styli in my pocket will reduce delays to accessing the controls in an emergency.
The butt and lid on my Kaweco Liliput pen both work as a pointer on the old‐fashioned touchscreen that my laptop has. However, in this use, the heftiness is immediately tiring. Sadly, the Liliput ends are no good for tapping on the touchscreens found on most 2010s smartphones etc, as they work differently.
In July 2021, I began using a similar Kaweco pen, an Al Sport, fitted with a transparent “Connect Disc” for operating smartphone‐style touchscreens. Unscrewing its lid slows down spontaneous use and the tapping of its large, rigid tip is loud, but this stylus is substantially easier than the Targus ones to hold, direct, and keep track of, especially during protracted use. It may even open up the option of digital handwriting for communication over the phone network. Alas, the Connect Disc does not work properly on my laptop’s screen.
I am told that an appropriate stylus for my laptop is usually available at a reasonable second‐hand price over auction websites — I just haven’t been able to access those!
Some masks themselves cause me problems. However, have some reusable cloth ones that are okay. These make some difference, help buy time. On other hand, interfere with smell, so sometimes interfere with ability to quickly detect potential hazards.