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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When Your Disability isn’t Considered in Grade School

I have hemiplegic cerebral palsy and am on the autism spectrum. I wasn’t diagnosed with the latter until I was eighteen and had already graduated high school. In some ways the total lack of knowledge my parents had about cerebral palsy contributed to this lack of diagnosis. My extreme sensitivity to touch and textures was attributed to my CP. My behavioural issues were never linked to my hyper-sensory issues and as such was generally considered to be poorly behaved and to have issues with anger management.

So though my autism absolutely affected my grade school experience, it was not something my parents or teachers were aware of. So for the purposes of this post, I am going to focus mainly on how having CP affected my experience of government mandated education.

Doctors would often describe my cerebral palsy as mild. As far as I can tell that mostly just boils down to the fact that I can walk without the assistance of a cane or walker and can climb a flight of stairs.

Having a disability that has been labeled as mild by the medical establishment also seems to have the added pressure of being considered “not disabled enough” to need accommodations.

When disability and education are discussed it usually follows one of two streams.

Inclusive education: where disabled and nondisabled students are taught together with added supports for the disabled students.

Or Segregation: where disabled students are taught separately from their nondisabled peers.

Each group has their pros and cons and supporters or detractors.

In my case neither of these scenarios was even considered. I was just dropped into a school that had no supports for disabled students. I was one of only two students in the school with a disability. The other was in the English stream whereas I was in French immersion, so while we were aware of the other, we had little contact with one another. We might as well have been attending different schools.

Because my disability wasn’t really considered to be something that required consideration or accommodation, it was never discussed that I might face physical barriers to access the school or activities. As such when I encountered them it never occurred to me that I could or should complain or demand access. I was already being viciously bullied by the other students and was keenly aware that if I mentioned my difficulties, I would just be further separating myself from my classmates.

As I have mentioned in a previous post, one of the issues I encountered at this school was an inability to use the sinks in the school bathroom. This being the early 1990s, those motion sensor taps hadn’t been invented yet so in order to conserve water, the school installed sinks that had rounded knobs that stopped the flow of water as soon as you let go of them. I did not have the hand dexterity or strength to use those taps. It never even occurred to me that I should complain. I thought that the inaccessibility was normal and acceptable.

Other than that in those early years my difficulties came up when scissors or tracing were involved. I could not hold objects still with my weaker limb in order to trace a object or cut it with my dominant hand. I had a lot of particularly sloppy looking art projects as a child.

Gym class was generally awful at both my elementary schools but there was a situation at this first school that was particularly bad and occurred because my disability was never considered and I was expected to just be abe to do everything that my able-bodied peers could.

It happened in grade 5 which was also the year I insisted on transferring schools. The teacher had planned an alternate gym activity. We were going to ski in the playground.

All the other children put on their skis and immediately began racing down the low hill that the school was built on. I on the other hand found that as soon as I put on the skis (which were poorly sized to my small frame) that I was immobile. My left leg was to weak to get me moving. I quickly fell down. I decided the best course of action was to just stay still until the class was over. Unfortunately the teacher noticed my nonparticipation and demanded to know why.

I explained that I wasn’t able to ski but assured her I was fine and didn’t mind. She however concluded that if I couldn’t ski than no one could. Against my pleading, she recalled my classmates told them the fun was over and even pointed to me as the cause.

My peers spent the rest of the day making it very clear that they were less than impressed that I had ruined their fun.

I could have easily just played outdoors without skis, there were several sleds at school as sliding down the hill in Winter was a common recess pass time but instead, I was made the scapegoat for my teacher’s lack of imagination or consideration.

Unfortunately my move to a new school later that year did nothing to improve my situation as I became the only disabled student in the entire school, a trend that continued into high school.

While in high school, I continued to have the expected issues in gym class, where my lack of athletic ability was further highlighted because my school had added a points system to the curriculum. Our performance was publicly displayed on a chart where I was placed dead last by a wide margin. These placements were supposed to be anonymous but were most definitely anything but. The comparison was supposed to incite competition but was really more of a ranking system.

High school gym was where I first really advocated for myself but it did not come from a new found sense of entitlement to access and inclusion. It came from a real fear that if I participated in the outdoor rollerblading class that I would risk real and serious injury. I had to spend the entire class sitting in the change room while I waited for the others to return.

The class that actually had some of the worst access in high school was actually Grade 9 & 10 Science. My social isolation followed me from elementary to high school and when it came time to find a partner in science class, I was frozen out. There was an odd number of students so I was left out. I tried to find a pair who would let me work with them but was repeatedly refused. I asked the teacher to assign me to a pair but he felt that it was not his responsibility. I was thus forced to work alone. I had to try to complete experiments that had been designed for two able-bodied people alone and with only one fully functioning hand.

This continued with me underperforming my experiments until due to my lack of dexterity I burned myself with hydrochloric acid. It would have continued beyond that because my teacher remained unmoved by my obvious disadvantage but finally a pair in the class took pity on me and allowed me to work with them.

My troubles in science class weren’t over though. When we started doing experiments where our findings had to be written in charts that we had to draw by hand with a ruler to our teachers precise specifications. As I have mentioned, I don’t trace well, I can’t hold a ruler steady so my charts looked sloppy and I began to lose marks for presentation even if my findings were correct.

I explained the reason for my difficulties and asked if I could make the charts on the computer in advance and fill in printed sheets by hand. I was refused.

My request in no way threatened the academic integrity of the experiment and would have stopped me losing marks for something other than a wrong answer but I was refused and that refusal did not come with a justification.

I never complained to the school, I don’t even think I mentioned it to my parents at the time. It never occurred to me that that complaining was an option. I didn’t know I had the legal right to accommodation.

The reason I did not know this was because I had been completely isolated from other disabled people and to the adults around me this was seen as a good thing.

In an ableist society, a disabled person’s value is determined by how little effect their presence has on the nondisabled people around them. This creates a hierarchy of disability that is often internalized inside the disability community. The fewer accommodations you need or reject using despite need means you have more value. You are less of a burden.

The more obvious your disability or the more you are seen as part of the larger group of disabled peopled, the less value you have. This is a systemic problem and often leads to disabled people comparing themselves to others and finding the others wanting.

People brag about the accommodations they don’t use. This reinforces the idea that needing and accepting accommodations makes you lesser.

I categorically reject this idea because I have experienced the harm and marginalization that is the result of being denied the help I need to succeed.

My experience has also made me acutely aware of the harm that total isolation from disabled peers can cause. I never knew any better and that ignorance did not mitigate the harm I experienced through lack of physical or social access. Perhaps if I had been aware of other disabled children, I might have known to fight back against those instances of oppression where changes could be made.

In my isolation, I never knew that change was even possible.

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.