If you watch ads for electronic walking aids like the Bioness L300 or the Walkaide, you will come away with two distinct impressions. First that being disabled is the worst thing to ever happen to anyone and must be negated regardless of the cost. Secondly that the advertised product is a magic bullet that will solve all your problems.
Both of the devices I mentioned treat foot drop. A condition I have as a symptom of my cerebral palsy. Most people with foot drop deal with the effects (which can include increased risk of falling, spraining ankles and general difficulty walking because the heel doesn’t lift on its own) with a leg brace known as an AFO.
AFO’s are often just solid plastic that keep the heel rigid so that when you walk, the heel hits the ground first rather than landing flat footed or toe first. AFO’s are not particularly comfortable and contribute to muscle atrophy as they do not allow for muscle movement. This means that if you aren’t wearing it, your risk of tripping or worsening your gait increases.
I myself after wearing my AFO regularly for months rolled my ankle so badly it was sprained for a year on an occasion when I wasn’t wearing it. Now I try to balance my time in the brace to avoid that level of muscle atrophy in the future. I still however have drop foot and have of late been stubbing my toes a lot lately while not wearing my brace (twice to the point where my toes bled). I would love to get rid of my AFO and devices like the Walkaide or Bioness may allow for that.
Both devices use electrical pulses to raise the foot while the wearer is walking. Bioness by placing a sensor in the heel of the shoe which alerts the device to stimulate the muscle when the heel is lifted. Walkaide uses the movement of the knee as a guide. Both devices are worn just below the knee. Unlike the AFO these devices are therapeutic in nature and build muscle in the wearer. For some, after enough use, the device may become unnecessary after enough muscle and brain training take place depending on the reason the device was prescribed in the first place and the condition’s complexity.
I became aware of the Walkaide several years ago, around the time I got my first AFO. I was intrigued and my Physiatrist suggested that I would be a good candidate for the device but that it wasn’t covered by Saskatchewan insurance. The cost she estimated would be around $5000.00. As I didn’t have anywhere near that kind of money I quickly decided not to pursue it but I was curious, so I looked it up online.
I was entirely sickened by the advertising that the advertising that the company produces. My initial source was this video which looks at how the Walkaide is used by someone with cerebral palsy.
The framing of cerebral palsy is grossly offensive. It is in so many ways made worse because the person doing the framing is the parent of the user.
The child’s mother describes the grief associated with having a disabled child and the feeling of loss for the imagined nondisabled child she never actually had but only expected to.
While I can understand having these feelings, considering the way our society views disability. I cannot fathom why any parent would express them publicly where their child will almost certainly see it and know that in their parent’s eyes they are broken. The fact that the Walkaide is framed as “fixing” the child only adds to the offensiveness.
I would be devastated if my mother so much as uttered such a statement. If she did so publicly to sell a product, I would feel completely betrayed.
There are other problematic points in the video but this is by far the worst.
All of the other videos feature adult users and are better because they at least can consent to how they are portrayed but still problematic. You can view the entire series here. My issue with the other videos is mainly in the framing of disability as the ultimate tragedy and then framing the Walkaide as some kind of miracle cure.
I would like to highlight the overview video which is made up of clips of all the others for one big reason.
In three cases where they highlight testimonials. The testimonial is not coming from the user but from a parent or spouse. This suggests that a disabled person should consider the expense not just for how the device might help them but to keep them from being a burden on their loved ones. It’s a way to make people feel guilty and that they are burdens. This is unacceptable. By watching only that video, you may not even guess that the users themselves are capable of opinions.
In all the videos at some point or other, the user or family member speaks about how worthwhile purchasing the devise is. In one, a person even says it is worth more than the actual cost (so the company is doing you a favour by not actually charging more). They plead with the viewer to find some way to afford it.
Oddly if you go looking for a price tag you won’t find one beyond the odd estimate on message boards. Even the price I quoted above was a guess by my doctor.
I more recently became aware of Walkaide’s main rival, the Bioness L300 at a routine check-up from my physiatrist. It has been several years since the two devices became available and Saskatchewan insurance now covers the Bioness (though not the Walkaide). I was prescribed a trial of the device.
I of course went home and did some research. I was again disappointed.
Again there is the disability as ultimate tragedy narrative. This time set to sad music with dramatic narration, Again it positions the device as a miracle cure.
Bioness doesn’t line up a bunch of videos on its website but you can find quite a few on Youtube.
I think both Bioness and Walkaide have forgotten that they sell medical devices that have actual benefits for certain people and not the latest snake oil faux treatment.
I don’t like feeling conflicted about accessing a therapeutic device because I feel like doing so also comes with having to overlook my discomfort with their deeply offensive marketing.
I have gone ahead with my Bioness trial so I will provide as objective a review of my experience of the product as possible. Most of my observations can only be applied to the Bioness and not the Walkaide (though I am told by people who have trialled both that the sensation of the electric stimulation is the same). I hope that this can cut through the bullshit and bring the narrative back to the actual medical uses of the device, devoid of the miracle hyperbole that is used as a marketing strategy.
The first thing that happens during the initial fitting is the calibration of the electrical stimulation. My reaction to that was pain. You need to be aware that electrical stimulation is not comfortable. It is not a pleasant buzzing. It hurts. Ig=f you have low pain tolerance, this is not the device for you.
As you walk around, you do get used to the pain but it is always present and you are aware of it.
Because the Bioness works on a heel sensor, if you are standing still and shift your weight you will get a shock. That shock will continue until you fix your stance (this shock is startling and I’ve embarrassed myself in public already). I learned that if you are standing still or walking intermittently (like if you’re shopping) it is best to turn it off.
Impressions of benefits
That being said, I have seen marked improvement in my walking, particularly going up stairs or walking on uneven ground. I no longer end up walking on the edge of my foot on uneven ground. I have also already noticed the impact on my ankle and calf muscles. While it is to early to see results, I can definitely feel muscles being used that have been mostly dormant since I started using an AFO.
The Bioness works for me though I have heard anecdotally from medical professionals that just because you have a condition that can be treated by the device doesn’t mean that it will work for you. One person I spoke to claimed that as many as 50% of trials fail.
So like any other medical device it has its pros and cons. improve muscle strength and
If it works, it does noticeably improve walking and a feeling of stability. It also deters muscle atrophy but that comes at the cost of comfort. The electrical stimulation isn’t fun and it will be a while before I think I can tune it out completely. Sometimes it is downright distracting even if the current is at a tolerable level.
Ultimately for me the benefits are worth the negatives but the only reason I am even considering it is because it is covered by government insurance. If it wasn’t, I would walk away in a heartbeat.
If we assume that my doctor’s estimate of $5000.00 is correct, I can think of things I would rather spend it on if I had to make that choice.
I could pay two semester’s tuition or pay four months rent plus groceries. Both of which are more tied to my quality of life than being able to retire my AFO.
These devices are not miracles and they need to stop marketing them as such. They need to focus on their actual risks and benefits while recognizing that disabled people’s priorities should not be solely focused on their conditions but broadened into realizing that people really do need to pay rent. People shouldn’t be guilted into buying something that they can’t afford.
An electric orthotic isn’t helping much if you have nowhere to live and no food to eat.
AFOs may not have as many benefits but they are more widely compatible with people and they are considerably more affordable.
I remind you again these are medical devices. People deserve to make informed medical decisions so the risks and rewards of all available options should be presented objectively and the costs should never be hidden until after that decision is made.
I beg the makers of both Bioness and Walkaide to do better and to be more respectful of the people they are marketing to.