When You Hate the Marketing for an Assistive Device that Might Actually Be Useful, a Sort of Review

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.

First Impression

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.

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Reinterpreting the Social Model of Disability to be More Inclusive and Less Confusing

There are two main models that people use to understand disability and its place in society.

The most common is the medical model of disability (AKA the individual model) which positions disability as a solely individual medical experience and puts emphasis on treatment or cure. The overall goal is to have the person with the disability become non-disabled or its closest approximation.

It can lead to situations where the individuals desires and comforts are ignored or even undermined by the strict demands of the medical and rehabilitation establishments. The attainment of normalcy can come at the expense of quality of life for the disabled person.

In his memoir Standing Tall. Spencer West talks about how he was encouraged to use bulky and uncomfortable prosthesis even though he could get around much more easily using a wheelchair or walking on his hands.

The push for prosthesis also required him to sleep in a painful back brace to get his spine aligned so he could use them properly.

Ultimately, he rejects the use of prosthesis because they don’t actually help him or enrich his life in any way.

Disabled people have been challenging the supremacy of the medical establishment by trying to shift the conversation away from being seen as patients but rather consumers of medical services. This would allow them to get the medical interventions they need without being forced into those they don’t. Unfortunately due to the popularity of the medical model, people are often forced to receive treatments and therapies they don’t want in order to receive services. Treatments are often tied to disability supports or workers compensation. Failure to comply could mean the loss of necessary funding.

Disabled people have therefor created a new way of looking at disability that is self-defined and a direct challenge to the prescriptive power of the medical model.

The Social Model as imagined by its original creators goes like this

Disability is the social oppression experienced by people with impairments and can be alleviated by a social shift which eradicates the social prejudices and physical barriers that keep people with impairments from full social and public inclusion.

Well that was confusing so lets break it down

Disability no longer refers to a medical diagnosis. It is actually a social oppression like racism, homophobia or sexism.

Instead those diagnoses are now referred to as impairments

The solution to all the problems of people with impairments is physical accessibility like ramps, sign language and braille. and for people to stop discriminating. Then everything will be perfect right?

Probably not.

There are two main criticisms of the social model

1.) It denies the individual lived experience. Some people do suffer from more than socially created expressions of bigotry. Not everyone’s problems will be fixed by ramps or braille. Some people live with actual barriers caused by their conditions like chronic pain or fatigue.

2.) It completely ignores intersectionality. The model is often criticized because it was invented by white, male wheelchair users and therefor is tailored to meet their needs while overlooking the needs of people of colour, women, the LGBTQ community and any other marginalized group.

Not everyone’s problems are fixed by a ramp and the language of the model is so academic it has no real meaning in social usage.

It does however have a point social and physical barriers are a major problem that create additional problems for disabled people.

I don’t find any value in the semantic gymnastics the model uses Disability vs. impairment. There are already words to describe the social oppression of disabled people; ableism (my preference) and disableism. Both are already in use and neither can be used to deny the lived experience of a disabled person.

There is a lot of value in the spirit of the social model in that, the inclusion of disabled people in society cannot be attained without dismantling the physical and social barriers that exist to exclude us.

It just needs to be removed from the bastion of academia in which it was created and currently resides so that it can evolve into something that people can understand and apply in their lives.

Why I Don’t Use People First Language: A Brief History of My Relationship with the Language and Disability

I am going to be clear up front, this is NOT a condemnation of person first language or the people that use it. I always endeavor to refer to people respectfully which includes using their preferred labels. This is rather a case of personal opinion and a reflection on how the language of disability is structured and created.

If you live in North America and you have any sort of connection to the disability community, you have probably come into contact with ideas around the politics of language. By this I mean how people want to be referred to if their disability is being referenced. The biggest and most outspoken contingent is for “people first” language (person with a disability, person with autism, etc.). If you look at disability etiquette guides you may even be commanded to use people first language and discouraged from using terms like disabled person.

The latter is my personal preference and oddly enough, were I to be live in the UK, those same language etiquette guides would agree. Interestingly their rationalization is very similar to that of arguments for people first language. The individual is paramount in language framing. An individual should not be defined by their diagnosis. They discourage using terms like “the disabled” or any other language where the person’s humanity is erased.

If the reasons are the same why is the conclusion different?

In North America disability is mostly defined in society through a purely medical perspective. Disability equals a disease that must be stopped and is the source of suffering in the individual. Disability is often permanent and no one wants to have focus on them based around the assumption that they are medical balls of suffering rather than as people. Hence trying to focus on the supremacy of humanity first in rhetoric to distance themselves from the negative connotations of the disabilities they are permanently connected to.

Language in the United Kingdom is based more around defining disability as a social experience where often the most limiting barriers are not people’s diagnoses but rather the fact that society is full of physical and social barriers that limit the disabled person’s ability to participate fully in society. In this way disability is not just a medical diagnosis but an experience of social exclusion. Putting disabled first functions as a description of the experience of social oppression.

That may sound complicated and more than a little convoluted and it is. While in my experience, I am far more limited by socially created physical and social barriers than I am in what I cannot do, I recognize that for others while they share my experience of social exclusion, they do have personal experiences of disability removed from social life that may cause them suffering or hardship.

So there are these two dominant points of view and I find both of them flawed so why go why choose between the two instead of choosing something else like special needs, differently-abled, etc.. Short answer I find both innacurate and condescending (why, is another post entirely).

Long answer, the language around how to describe disability changes often. These changes are usually a reaction to the fact that the existing terminology has become something more than just a medical description and this something more consists of turning medical terms into insults. These insults were and are used to directly insult the people they are supposed to describe.

This is most evident in terms used for people with intellectual disabilities. They used to be classified as idiots, morons, imbeciles and cretins. All those words have actual medical definitions and are not in fact just synonyms for stupid. That is however, how they came to be used. In direct response to this the medical profession decided to find a new word. One that wouldn’t have the negative connotations of insults. The word they chose as a catchall to replace them was retarded.

A word currently so offensive and stigmatizing that there is a movement to have it removed from public usage.

Other disabilities are not immune to to being reduced to insults. Statements like “are you blind?”, “are you deaf?” or”That’s lame” all have connections to descriptions of disability and certainly aren’t meant kindly.

That’s when they stopped using medical terminology and started adopting euphemisms like “special needs” and “differently-abled”

The idea being that the language itself was causing the stigma and if disability either the word itself or a diagnosis was removed it would both remove linguistic stigma and create positive non-medical terminology.

This to was a failure “special needs” is used as an insult, The main premise that it was the language that created a stigma towards the people. In reality it is the people who are stigmatized and any word used to label us will by association be viewed negatively. They could change the dominant preferred label to ” fluffy bunnies” tomorrow and the most likely result would be that sales of pet rabbits would plummet rather than our benefiting from positive associations with cute animals.

This is why disability has returned as a label so long as it’s attached to person as a qualifier. In my opinion word order is irrelevant. Until the stigma attached to actual disabled people is tackled, we can call ourselves whatever we want, the oppression we experience will not save us.

That is not to say that mindful language choices are not important. Negative associations with words that describe disability should absolutely be challenged.

But so far as having a single supreme, universally accepted label is concerned, I don’t think uniformity is necessary. In fact linguistic deviance may help challenge people to think about why they use the language they do and may spark a conversation that goes beyond labels and looks at the people that choose them.

For me choice is key. If I am going to be labeled, I am not going to just accept a term that is almost certainly created by nondisabled people, I am going to define myself.

So to conclude I prefer the term disabled person/people because it is accurate and reflects my personal experience of disability but I accept and encourage other disabled people to choose for themselves.