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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The Joy of Shoes that Fit: Fashion and Disability

2015-07-08 15.15.25

I have never owned a pair of truly pretty shoes. All of my shoe purchases are generally based on whether the shoe works with my various orthotics or if I’m going for a dressier shoe (because I have yet to find a pretty shoe that works with even the least invasive orthotic) will they stay on my feet. This has left me with runners for day to day and casual (almost exclusively black) Mary Janes for when I need to dress up.

I have been wearing some version of this type of shoe to every formal event for my entire life.

I have been wearing some version of this type of shoe to every formal event for my entire life.

Shoes are the stereotypical feminine obsession. Chickflicks are full of characters who either have copious amounts of shoes or are lusting after a particular pair of inaccessibly expensive pumps in the store window. Brands like Jimmy Choo, Chanel, Miu Miu and Gucci are commonly mentioned with reverence. While these fictitious portrayals often exaggerate reality, there is a very real social expectation that women will wear pretty shoes.

It is not at all uncommon to see women wearing heels or ballet flats for everyday activities. These shoes are either notoriously uncomfortable (heels) or provide little support for the foot (flats). Stylish shoes are not only meant to be worn to special events or occasions but are often expected in day to day life. Some employers expect their female employees to wear heels. Though there is push back against those expectations.

Shoes are a fashion statement and it is very common to see women going their entire day wearing ballet flats or heeled boots.

I can’t wear either.

Day to day I am either using either my AFO

My AFO

My AFO

Or if I don’t know how many stairs I will encounter a pair of shoes that can accommodate my custom orthotic that compensates for the difference in my leg lengths

I had to get D width shoes to accommodate my AFO despite my B width feet and the fact that I only use an AFO on my feft foot. When I am just using an orthotic lift, I can get shoes of the appropriate width but my left foot is significantly smaller than my right so no matter how I shoe shop I always have one foot that is swimming in to much space (I can’t afford t buy two pairs of shoes to accommodate the difference). With runners, it is generally possible to tighten the shoe sufficiently to make a single pair work.

When it comes to formal or just more dressy events I have to forgo orthotics for the duration if I don’t want to have clunky runners paired with my nice dress. I am ok with this as these events are not frequent. One day or a few hours without orthotics every month or so is manageable–I rebelled when my job at a department store required black dress shoes and wore black runners instead–but finding dress shoes that fit is its own kind of hell.

I can’t wear heels (I would end up breaking an ankle) and flats just fall off my smaller foot. So I have been stuck with Mary Janes (flat shoes with an ankle strap). Even then I run the risk of rubbing the ankle of my smaller foot raw if the strap isn’t snug enough. Add to that the fact that my smaller foot has for the last few years been swelling in hot weather and dressy shoes are just a recipe for pain and discomfort.

So when my sister asked me to be a bridesmaid at her wedding this summer, my main wardrobe concern was the shoes. Luckily she left the choice up to the individual rather than restricting style or colour which would have made shopping a nightmare. It’s hard enough finding serviceable shoes as it is without adding restrictions. Although being unemployed I was dependent on my mother to purchase the shoes for me (she is a notorious bargain hunter).

Ever since I discovered the online marketplace Etsy, I have been obsessed, though generally from afar. I was particularly interested in the shoe makers who offered custom fit shoes. They have always been well out of my price range but I coveted them.

For the auspicious occasion of her daughter’s wedding and my role as bridesmaid, my mother (with much trepidation) agreed to buy me a pair. I selected a cute pair of oxfords. They are dressy enough for the occasion and cover enough of my foot so that the leather won’t dig in if my foot starts to swell at my sister’s outdoor wedding.

I sent them my foot measurements and e-mailed them scans of my feet so that they could tailor the shoes to my individual feet.

Just over a month later after a minor postal hiccup (the delivery person tried to deliver the shoes to a house across the street), they arrived and they are amazing.

Shoes as they appeared in the box

Shoes as they appeared in the box

Shoes with sole visible

Shoes with sole visible

For the first time in my 28 years, I have a pair of shoes that fit me perfectly (you can’t see the size difference in the photos. They are also the prettiest shoes I have ever owned.

me wearing the shoes

me wearing the shoes

I can’t fully explain how good it feels to finally have a pair of pretty shoes that match my personal style, rather than a pair that fits poorly and only barely qualifies as a dress shoe.

These will be my go to shoes for formal events, job interviews or whenever runners just won’t do until they fall apart (which I imagine won’t be for a while because they are really well made) or the shoe industry clues in that disabled people want pretty shoes too and that maybe, they should start catering to our needs instead of making us constantly make do with what little is available to us.

Fashion and Disability: Why are Adapted Bras so Hideous?

My relationship to fashion is a rocky one. Mostly due being autistic. As a kid I was extremely sensitive to the texture of clothing. If I wore something that was even slightly uncomfortable, I would get so stressed out that I felt like I was physically turning inside out. Consequently, buying me clothes was a major pain for my mother. We would have to go to multiple stores just to find a single outfit. An outfit I may only wear once because its texture and feel might change after it was washed.

Did I mention that I wasn’t diagnosed on the autism spectrum until I was 18? So my mother just thought I was being unnecessarily difficult. I got a lot of lectures about clothes and how frustrated she was about my behaviour towards my wardrobe. Add to that my hemiplegic cerebral palsy which left me unable to tie my shoes until I was nine and difficulty with zippers that lasted well into my teens.

Consequently I was a very unfashionable child. It wasn’t that I was unaware of fashion, I simply had to be completely ambivalent to it in order to be comfortable enough to function. I wore a lot of oversize t-shirts and pants with elasticized waists. Any article of clothing that was even remotely restrictive was impossible. I never wore denim or anything lacking in stretch. Basically, I wore a lot of track suits of the 80s variety.

track suit

I had so many of these. This became an issue at my Christian Preparatory High School where track suits were considered unprofessional and were against the dress code. I had about 5 outfits that were comfortable that barely passed dress code muster that I just constantly recycled. I have a much more diverse wardrobe now. I’m not sure if I have better coping skills or if they just put lycra and spandex in everything now, rendering clothing generally more comfortable (I also love the trend of tagless shirts, whoever came up with those is a genius who should be sainted). One article of clothing I continue to have difficulty with however are bras. Bras cause difficulties for both my disabilities. I lack the necessary hand dexterity to actually put them on properly. Whoever invented the hook and eye system most commonly used as a bra fastening probably never has to use it and certainly didn’t have to use it one handed. I have also found that I find bra clasps against my skin to be extremely uncomfortable to the point that it impacts my ability to function socially. Yet there are so few alternatives for people with either hypersensitivity or limited dexterity. While adaptive bras so exist, they were absolutely not designed with fashion consciousness in mind. Silvert‘s has a small selection that include these,

silvert bra

silverts 2

Those two bras are pretty representative of what is marketed as adaptive bras. You can find similar products from other adaptive clothing retailers.

They are not the sort of bra that can be worn under a low cut top or even a tank top. They are also in no concievable way sexy. Pretty bras it seems are the sole domain of people with more dexterity than I have. It also just reinforces the idea that disabled people should not be sexy. The thing is, it doesn’t have to be this way. It is entirely possible to make a pretty (or at least more fashionable) accessible bra without resorting to frumpy. The problem is very few companies do. A while ago I was fortunate enough to find the Bonds Pull Over Bra (pictured below)

BONDS-Pull-Over-Bra

I bought three. They offer good support, have adjustable straps and look pretty much exactly like a normal bra you would find in a store. They also don’t have clasps of any kind so are easy to get on and are comfortable. They have also been discontinued and are no longer available. I’m not sure why, the Bond’s website was full of rave reviews for the product. So while you can’t get them anymore they do prove you can make a supportive pullover bra. I wish they would bring it back and that other lingerie retailers would start making similar products in different styles. Most other pullover styles are bralettes which have very little support. They worked okay for me in my younger days but I find I now need something a little sturdier. I am also finding that on an increasing basis even bralettes have back clasps.

Free People bralette

Free People bralette

While I wish mainstream retailers would make the effort to include accessible bras in their lines, because who doesn’t want easy comfortable bras. It’s not like they’re something that is worn all day everyday… oh wait.

So they would have consumer appeal outside the disability community. I also find it disappointing that clothing brands that are specifically marketing adaptive clothing seem to care so little for esthetic (it’s not just the bras believe me). As I have grown further away from my track suit wearing youth, I find myself less able and less willing to force myself into ambivalence about what I wear because there is so little created with people like me in mind. I no longer accept the visible otherness that being unable to wear trendy clothing or at least wearing the same few things repeatedly creates. I like to express myself through what I wear and I find it galling that I am limited now in what is considered an essential clothing item.

If anyone knows of some comfortable accessible bras that my hours of trawling google haven’t found, please share in the comments.