The Cost of Unnessecarily Medicalizing Acts of Daily Life

A few weeks ago I found myself in the Occupational Therapy Kitchen of my local rehabilitation  hospital. My physiatrist was filming me demonstrating how I undertake various cooking tasks as a person with hemiplegia (to be shown to her medical students).

Cooking for me is both time consuming and laborious. It can take me nearly ten minutes to peel a single potato. Peeling even that one potato can leave my left wrist cramped and in pain. I generally avoid cooking anything that involves peeling vegetables as a result.

My doctor started out by having me demonstrate how I would normally complete a task by myself at home, which inevitably took me about three times longer than an able-bodied person.

Then she had me do the task over, using the adaptive kitchen gadgets that the hospital used for physiotherapy. While my actions were still slow and awkward, the tasks were completed more quickly and with greater ease. The usefulness of adapted tools for daily life cannot be fully described.

Much of the reason for this is that I and many people do not have access to them because they are prohibitively expensive. I suspect that part of the reason for this inflated cost is that they are marketed not as kitchen tools (or other adapted gadgets for dressing, cleaning, etc.) but as medical devices.

I doubt most people view their kitchen knives, pots or cutting boards as medical devices. I suspect even disabled people who have access to the adapted versions actually think of them that way.

Yet if you google “adapted cutting board”, you will come across companies like Patterson Medical, which sells adapted kitchenware along with other adapted devices for various acts of daily living. Patterson Medical does also sell more tradition medical devices such as splints.

The relegation of adapted devices to the almost sole domain of medical supply companies is that they become very expensive. A standard non adapted cutting board can be purchased in the price range of $10.00-$30:00 depending on size and material. A large Patterson Medical cutting board costs $66.00. For all that additional money, you get metal spikes to hold food still for cutting, suction cups on the bottom to hold the board steady and a corner with sides to keep bread still for spreading PB & J. None of these differences really justify the additional $30.00-$50.00. An additional $15.00 maybe to cover the extra material and labour.

Smaller ones can be purchased on Amazon for the still inflated price of $57.99 (and it’s not nearly as good). This one is sold by a company calling itself The Therapy Connection.

As a poor graduate student, most of my kitchen gadgets were either gleaned from my mother’s kitchen or bought at the dollar store. As such they have no adaptive qualities.

Not having access to affordable adaptive gadgets inevitably means doing without them. Meaning that access to tools that allow people to go through life more safely and conveniently is a luxury. A luxury should really be me coveting a Vitamix Blender. You know, a thing I want but will never have and can completely live without, without consequences.

A product that allows disabled people to do a task more safely and easily and at a closer approximation of how the rest of the world performs that task, should not be a luxury.

The thing is, these are products that can more often than not benefit everyone. They greatly reduce the risk of accidental self-injury while preparing food. By keeping them firmly relegated to “for disabled people”, they will never enter the mainstream where they may become more affordable.

One of the reasons for this is that everything about being disabled is medicalized. Nondisabled people avoid that association and view basic adaptations as oddities. They avoid using them themselves in any context other than voyeuristic experimentation. Consider the fascination with wheelchairs, scooters and crutches as long as they know they can walk away from them as an example.

Another non financial cost is that people who would benefit from such devices may not even know they exist. They are sold on the internet and at specialty stores. If you don’t have a strong disability peer network or helpful doctor. You may not know these things exist.

Keeping everything about disability labeled either medical or therapeutic, keeps them on the fringes and limits access.

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How Secret Limitations on Grants for Disabled Students Hurt Us

Being a student with disabilities can be a complicated and expensive endeavor. While university is a financial strain for most students, disabled students often have additional costs associated with either services or equipment that we require to succeed academically. The government does recognize this additional financial burden and has grants in place to offset them.

The problem arises from the fact that the policies and restrictions for these grants are shrouded in mystery and if you can identify them, don’t necessarily mesh with reality.

On the surface the Canadian grant for Special Services and Equipment for Students with Permanent Disabilities seems amazing. It is advertised as offering qualifying students with funding up to $8000.00/academic year for services like tutoring or equipment like computers and adaptive software.

I have benefited from this grant in the past and hoped to access it again as I begin my PhD. Much of what I had received previously is either functionally obsolete after two operating system upgrades makes them no longer compatible with modern computers or just no longer functioning at all. As a result I applied for an updated version of Kurzweil 3000 (mine no longer works properly). If you are unfamiliar with Kurzweil it retails for over $2000.00 CND. It is also invaluable in that it enables me to get through my extensive list of required course readings.

The problem, the grant policies don’t allow for full upgrades of Kurzweil (purchasing an updated copy), only software upgrades (something that isn’t even available). On paper it looks like they understand that software evolves and that students need access to that update except they will only pay for it in a form that doesn’t exist. Effectively making their upgrade policy useless.

The biggest problem here isn’t that the policies are bad. Bad policies can be combated with evidence of their uselessness but that, the policies aren’t readily available to grant applicants. All you know when you apply is that you could be eligible for up to $8000.00/year. All the fine print surrounding cost restrictions and what they will replace is hidden and only available to the people deciding on whether or not you are approved.

I only found out about the restrictions after, I was only approved for a fraction of the funding I had applied for. I call my local student loan office and was met with a wall of statements like “well it is not our policy…” or “we have funding limits on…”

None of this information is available to applicants, you just end up with wrenching disappointment when you are not approved for things you were counting on.

On the National Student Loan Service Centre website, the grant is described like this

If you require exceptional education-related services or equipment, you may be eligible to receive the Canada Student Grant for Services and Equipment for Students with Permanent Disabilities. This grant offers:

  • up to $8,000 per academic year (August 1 to July 31) for each year of studies after high school (including undergraduate and graduate levels), provided you continue to meet the eligibility criteria.

The assistance provided under this grant is determined apart from your assessed need.

Eligibility

You are eligible if you:

  • apply and qualify for student financial assistance (have at least a $1 of assessed need)
  • are in a full-time or part-time program at a designated post-secondary institution
  • meet the criteria for students with permanent disabilities
  • include one of the following with your loan application as proof of your permanent disability: a medical certificate, a psycho-educational assessment, or documents that prove you’ve received federal or provincial permanent disability assistance
  • provide written confirmation that you are in need of exceptional education-related services or equipment from a person qualified to determine such need
  • show, in writing, the exact cost of the equipment and services.

The website for my provincial loans website is even more optimistic. It says that if your needs exceed the $8000.00 limit that you may be eligible for an additional $2000.00 from the province. They then link to the various forms that must be filled out. There is no mention of specific policies or restrictions (even though it’s the government you know they must exist).

You only learn about a policy if you ask for something that goes against it. You’ve already waded into the deep end of bureaucracy through the application process. You got the proof of permanent of disability, the statement of need, and the exact cost of what you need (which you need two quotes for each item, yeah they didn’t mention that on the website either). Now you are met with even more bureaucracy as you try to figure out why you weren’t approved for the full amount. The fact that classes start next week and these things were needed already. You are now faced with the reality that you may not get them at all.

It is hard to fight a system that knows all the rules and only informs you of them piecemeal when you break one.

It isn’t entirely surprising that the Canadian government won’t replace broken or obsolete technology. They are already skeptical  that disability itself can be permanent. I have in my dealings with them had to reprove my permanent disabilities countless times. The government seems to think that people miraculously recover. Forcing disabled people to waste time doing the same thing over and over.

This is best exemplified in this rant by Rick Mercer on benefits for disabled veterans.

It should be noted that in the case of veterans, the Canadian government now believes that miracles only occur every three years and have extended the length between required reproof by veterans to that time frame.

Under this system of miracles it is not difficult to understand that the government does not understand that computers break and that software becomes old and obsolete (or does not upgrade the way they want it to) necessitating repurchase.

Putting those kinds of limitations on disabled students effectively limits or can limit how much education that student can get. If the technology they received during their undergraduate degree is no longer suitable when they reach graduate school, it may affect their ability to continue in school.

Yet available information on this grant only hints at restrictions with phrases like “eligible students may qualify” and focusing on the high amount of the grant and making it seem that the help will continue by saying the money is available each year, giving the impression that you can apply for replacements.

Making the policies available or even summarizing the most common things that come up would go a long way in helping applicants tailor their applications for maximum success.

Keeping them secret makes it seem that the government doesn’t want applications to succeed or make the appeals process to onerous for applicants.

Completely erasing the fine print hurts disabled students while allowing the government to appear to be offering more aid than is actually available.

A Media Guide for Nondisabled People Talking About Innovations for Disabled People

Recently, I have written two articles on problematic media coverage of innovations designed for disabled people. The first was on the viral support among predominantly able-bodied people for a stair climbing wheelchair and a standing scooter. The second about Nike’s supposed shoes for disabled people which are actually only available in men’s sizes. In both cases none of the products being talked about are looked at critically so their flaws or limitations are never exposed.

These stories just become part of the able-bodied saviour genre of inspiration porn and inevitably do more harm than good because it leaves people who are unfamiliar with disability issues with an inaccurate assessment of what barriers still exist and the limitations on existing innovation.

I have therefor decided to provide a guide to talking about innovations for disabled people that will allow media creators to be more objective and hopefully limit the harm done by lazy inspiration porn inspired journalism or content creation.

I will use the two stories that I have already covered to show where more questions needed to be asked and more information given.

The first and possibly most pointed criticism I have of these kinds of stories is the framing. These are rarely meant to be true news stories. They are intended to be feel good click bait. This framing does not lead to a critical engagement with the content because such engagement might interfere with the intended warm and fuzzy feelings the viewer is supposed to have.

This is a problem of inspiration porn generally and it is harmful. The stories that impact disabled people’s lives should be told and they should never be diminished to the story that poses a balm to all the other bad news that surrounds it.

Doing that is both dehumanizing and perpetuates harmful stereotypes about disabled people which does not lead to warm and fuzzy endings for the subject of your feel good moment. (for more on the issues of inspiration porn go here and here)

A good way to gauge whether a story about disability is news worthy is to ask these two questions.

  1. If the subject of this story was replaced by a nondisabled person, would this still be news? If the answer is no, then you may want to reconsider it.
  2. Who is the target audience, is it everyone (this includes disabled people) or is it meant to appeal predominantly to nondisabled people? If the latter you should definitely think twice before running with it. If you are unsure, you should consult with disabled people to see how they feel about the story (the plurality of people is really important here)

Disabled people need to see stories that impact their lives in mainstream media. It is useful in both showing that media understands that the disabled experience is part of the broader human experience. Telling disability stories well also gives a more accurate representation of the disability experience to those who don’t live it, so disability stories can and do have universal relevance. They just need to be told in a more critical way.

In this article, I’m dealing specifically with how to cover innovations and technology but these ideas should be applied to all media coverage of disability.

Once you have determined that you do not want to ad another piece of retrograde inspiration porn to the world and that your story has actual merit. How do you do that story justice? The answer is ask questions. Don’t just accept the first answer.

Take the story about the Nike shoes which were widely glorified as shoes for disabled people. People who wrote about this story should have asked the following questions.

  1. Are these shoes really available to all disabled people? Look at different conditions that might require specialized footwear, is this shoe as universal as advertised. Are these shoes available to men, women and children?
  2. Does this shoe accommodate the orthotics that are common among disabled people? Things like heel lifts, AFOs, or Bioness sensors.
  3. Ask why any limitations found from the first two questions were not addressed by the company.
  4. Ask if the company plans on addressing these issues.
  5. Ask why a single company is addressing this issue.
  6. Ask other companies why they aren’t providing specialized shoes.
  7. Does a company providing a long overdo product deserve to be treated as heroic?
  8. Does the limited useability of their product indicate that the company was genuinely trying to help or just get good press?

In reality these shoes were only available in men’s styles and sizes which means that anyone who doesn’t fit those sizes cannot benefit from them. This adds up to the majority of disabled people as men and women with smaller feet as well as children were entirely left out. Nike however, still got a lot of great press and was positioned as a hero. I found no mainstream criticism of the limited usefulness of the shoes.

Attempts to engage with people who created these stories either resulted in no response or an acknowledgement but no change in content.

I did successfully get a response from the person who curated this Upworthy post on the Nike shoes.

She acknowledges the limitations but didn’t change or remove the story from Upworthy. It still has quotes like,

Nike proves that you can create a product designed for the needs of a smaller community that has mass appeal as well.”

The reality that Nike failed to deliver on its universal claims and instead only serviced a very small portion of the disabled population, isn’t really in line with Upworthy’s standard of feel good or inspirational blurbs. It is however disappointing that they would leave the story in its clearly inaccurate state even when faced with that inaccuracy (the fact that this story is blatant inspiration porn and that Upworthy is a huge purveyor of disability inspiration porn is another post altogether).

In the case of technology like stair climbing wheelchairs and standing scooters, media creators should be asking questions like,

  1. Is this  invention going to be marketed or will it stay a university engineering project?
  2. If this device is marketed who will be responsible for paying for it.
  3. Does this device answer the needs of everyone who has difficulty climbing stairs/navigating narrow corners?
  4. Is this really the the best and most comprehensive way to address physical accessibility barriers?
  5. What the the popularization of these devices mean for people whose barriers to access are not addressed by these devices?

These questions are far from comprehensive but they are a good start in contextualizing innovations for disabled people. Using them as a spring board for your story will help you have a more nuanced and realistic representation of the facts and their actual impact.

I will conclude with one final and utterly crucial piece of advice.

Always include the voices of actual disabled people, free from the spin of business advertising. Don’t just have people who talk about disabled people and the impact a given product will have. Ask actual disabled people. The wider variety of disabled voices you get, the better.

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.

When Celebrating Accessible Technology is Just Reinforcing Ableism

So this video has been popping up on my Facebook news feed a lot lately.

It’s a video demonstrating a wheelchair invented by Swiss students and it’s a wheelchair that can climb stairs.

Now I know that stairs are a major physical barrier to wheelchair users and I have no issue with any technology that addresses those barriers. I however find the support of able-bodied people for technology like this troubling.

Viral excitement over adaptive technology seems to be directly connected to whether or not it challenges the social aspect of an inaccessible society. People are all for increased access so long as they don’t have to do anything about it.

It reminds me of another mobility device video that was being widely shared primarily by able-bodied people with the video caption “Making Wheelchairs Obsolete”

The 9 1/2 minute video details the uses of the Tek Robotic Mobilization Device which is basically an upright version of an electric wheelchair. It is specifically designed for people with paraplegic paralysis and isn’t really suited for wheelchair users with other conditions. The video however talks about how users of Tek can get around spaces that are inaccessible to wheelchairs like narrow store aisles. The device is also only really functional indoors with its low to the ground base incompatible with anything but a completely flat ground. Yet whenever I came across this video on Facebook it was always in terms of making wheelchairs and by extension the accommodations associated with them obsolete.

People love the stair climbing wheelchair and the standing scooter because they think it fixes the accessibility issue caused by a lack of ramps or elevators without actually having to install ramps and elevators. The perception is that the problem is solved without any change to society or the environment.

The happy “Look problem solved” mentality is however short sighted for many reasons. Primarily the reason that these devices are not suitable for all people with mobility impairments. Different wheelchair users have different mobility device needs that may not be met by either device. People with mobility impairments who don’t use wheelchairs may also need additional space to maneuver or ramps. The celebration of these kinds of technology show a very narrow understanding of what disability is. In the case of the Tek device, it is only useful indoors so an alternate mobility device is required outdoors.

Secondly for those these devices would help, able-bodied people ignore the cost of these devices and that in most cases that the cost would be shouldered by the disabled user. This essentially assumes that it is ok for certain people to have to pay a price of admission while others do not.

Third it assumes that it is ok to always put the burden of change on disabled people rather than deal with the reasons that accessibility isn’t already the norm. It positions the disabled body as social space where others can enact changes to mobility instead of making the actual social environment more mobility friendly. This ignores both the autonomy of disabled people and the fact that many of us don’t want to be “fixed” either by cure or imposed treatment.

Finally by so clearly associating an accessible environment to disability (therefor rendering it “other” and undesirable) people ignore the universal benefits of an accessible environment. Ramps are useful to people pushing strollers or carrying heavy objects. (for more on the last two points read Emily Ladau’s piece on why it is better to change the environment than people).

Yet this mentality that it is both easier and cheaper to as one person responding to my criticism on Facebook put it “Because it’s vastly cheaper to put shoes on people than to cover the entire world with carpet.” I’m not sure anyone has actually done the math on how much it would cost either to provide all disabled people with various mobility aids vs. Making public spaces accessible. I suspect he might be surprised at the outcome as a single ramp benefits everyone who uses it while a specialty wheelchair (that is likely expensive) benefits only a single person. It also just maintains the idea that if disabled people want access to the world we exist in, that we should have to jump through hoops that don’t exist for everyone else.

The more just solution is to remove the hoops altogether and not make ability to participate contingent on changing the oppressed group so that the oppressor never has to change but can feel like progress has occurred.

The Bureaucracy of Disability Accommodation in University

So I will be starting my PhD in Critical Disability Studies this Autumn. In preparation for this I have been applying for housing. I learned my lesson about campus housing during my Masters. I need physical accommodations for housing.

I like many other disabled people have been taught to shun accommodation wherever possible. I grew up believing that the less obtrusive my disability was, the more value I had as a person. I know this wasn’t my parents’ intent, they just wanted me to be independent and were a bit misguided in how that should be achieved. If I asked for help with something, I was often refused under the assumption that if I just tried hard enough, I would eventually figure it out. In reality this lack of support led to a lot of frustration and often things didn’t get done.

That is not to say that disabled people shouldn’t strive to learn to do new things but the mentality of responding to a request for assistance with “You’ll just have to figure it out” is generally not helpful. It also at least in my case led to the internalized idea that I shouldn’t ask for help even if I needed it (you can read about how well that went for me in grade school here).

While I have been getting better at asking for and even demanding (when necessary) the accommodations I need, I still often find myself with the idea that there are certain appropriate accommodations and that if my needs don’t fit that narrow description that I don’t need accommodation.

Which is how for the length of my master’s degree I found myself living on the fourth floor of a walk-up apartment building. I just assumed that because I don’t require adapted appliances or lowered sinks that I didn’t require accommodation.

As such I ended up in the general housing application pool and got what I was assigned.

As I mentioned, I ended up on the fourth floor of a four story walk-up. I managed but it wasn’t easy. Moving in and out were the worst, carrying everything up and down the stairs. I had help in those instances. While I walk well and can climb stairs, my balance is poor, particularly while carrying things. Added to that, stairs are difficult when I am wearing my AFO (leg brace) because it holds my ankle in a stationary position. Consequently I didn’t wear it much.

Getting groceries was particularly difficult, at first because I had to shop and get them on the bus and then from the stop up to my apartment. I was extremely limited in what I could buy because weight and balance were always a consideration. In order to avoid having to make multiple trips to the grocery store, I began having them delivered. Though it was easier for me physically, I still had to contend with delivery personnel  who were less than impressed with having to carry the food for me.

Now it is time for university housing round two, I know a lot more and I know what I need. Getting it however is a different story.

I know that to live comfortably and safely I need the option to avoid stairs when I am carrying things or wearing my leg brace so I need a ground floor apartment or an apartment in a building with an elevator. In order to get this, I had to get a form filled out by my doctor who is unfamiliar with the housing arrangements at my university. I filled the form out myself and luckily my doctor trusts that I know what I need and signed it for me. Because I saved her the trouble of filling out the form, I also luckily saved myself the usual fee charged for such services.

This was annoying enough but it was after I submitted the form that things got even more complicated.

Most universities have a single disability services regardless of type of disability (psychiatric, physical, learning, etc.). All your needs are taken care of in a single location. Not so at my current university. There it is broken up into three separate offices; physical and sensory disabilities, psychiatric disabilities and learning disabilities. They also much prefer it if you are only registered through one of them. Heaven forbid you have multiple disabilities with diverse needs. You have to decide what your “primary” disability is and go through that office.

Trying to choose a primary disability is ridiculous and kind of depends on circumstances.

I have both cerebral palsy and an autism spectrum disorder. Because the entire point of university is to learn and my autism is the most likely to impact my ability to do that, I registered with Learning Disability Services during my master’s. My cerebral palsy is rarely an impediment to learning. I can get around buildings and classrooms with minimal difficulty.

Where housing is concerned however my cerebral palsy becomes the key consideration, though it is important to note that not being accommodated for my physical needs does inevitably negatively impact my autism as added stress makes my autism more apparent.

I however cannot request housing accommodations through Learning Disability Services, they are in the domain of Physical Disability Services. So despite having already gone through the bureaucratic intake for my learning disability, I had to redo the process for physical disability.

When you go through having to prove that you are disabled and therefor entitled to accommodation you learn a few things.

1. Your permanent disabilities are assumed miraculously cured if the diagnosis or documentation is not recent

I learned this when I registered through Learning Disability Services. I provided documentation of my diagnosis but because I don’t generally feel the need to get rediagnosed on a regular basis it was considered to be out of date despite the fact that autism is permanent. All of my accommodation were thus given very begrudgingly. The reason I didn’t have more current documentation? My home is over a thousand kilometres from school and I didn’t have access to doctors that know me and my medical history. Which brings me to…

2. Disabled people are not expected to be traveling long distances to go to school (I guess if a program isn’t offered locally we are supposed to just not go)

As I mentioned, I don’t live close to my university and am trying to organize accommodations for housing. Yet upon submitting my intake form. I am invited to an in person interview. When I explain that going isn’t possible until I return to school I am treated to an explanation as to how the interview and filling out of additional forms is usually necessary before accommodations can be considered. They eventually agree to allowing me housing accommodations without the interview as I need housing in place before I arrive at school.

I was also treated to questions about why I was already registered with Learning Disability Services and a not to subtle suggestion that if I needed physical accommodations that I shouldn’t have done that.

Having secured permission to apply for housing accommodations, I begin to fill out the request form. I am reminded of my past beliefs that certain accommodations shouldn’t be sought because on the form only 3 types of accommodations are listed.

1. Do you need an automatic door opener?

2. Do you need light flashing alarms instead of audible alarms?

3. Do you require adapted appliances and a wheelchair accessible space?

My answer to all three is no. The form offers no question or space to request accommodations that are not met by those changes. I end up using an unrelated text box to discuss my needs. Hopefully I will be accommodated but it is obvious that they are not used to getting requests that deviate from what they expect disabled people to need.

My Love/Hate Relationship with Dragon NaturallySpeaking

So I type one handed and I’m an academic so a lot of typing is required, this poses a couple of issues. First I can’t type very fast and second I regularly feel like I’m getting carpal tunnel syndrome. I’ve been tested for the condition twice and in both cases the results were negative. While I may not have carpal tunnel, I do often deal with a lot of wrist and hand pain from typing. It was recommended that I start using speech recognition software and the only one that was ever recommended (by multiple people) was Nuance’s Dragon NaturallySpeaking. Since then I have owned and used two versions of Dragon. Dragon Home 11 and Dragon Home Premium 12. I will discuss my experience of both individually and then discuss issues that are common to both.

Dragon 11

I primarily used Dragon as dictation for writing but like most people with a new toy, I checked out its other features. Primarily controlling my computer with my voice. I was particularly amused with its functionality on the internet. I liked how I could command the software to open a link and have it do so (I know I’m easily amused). This function did however show an issue not with Dragon but with the general inaccessibility with website design. Occasionally buttons would not be coded with their visible titles. This meant that if you want or have to open a link with your dictation software, you have to verbally guide the mouse to the button and request the mouse click it,

Overall I enjoyed the software. I didn’t find it to be nearly as accurate as they claim (yes I calibrated it for highest accuracy). Anything composed through Dragon requires close editing.

The biggest issue I found was that it was completely incompatible with the web service Moodle which is commonly used by universities to offer online classes or online companions to campus classes.

I don’t just mean that I couldn’t dictate in Moodle, somehow the combination of Moodle and the Dragon add-on cancelled the ability for me to even type in the program. In order for me to complete online courses or online components to classes, I had disable the add-on. This forced me to type all communication through the site. It also put me at a disadvantage when taking internet delivered exams as I would have to type.

Dragon 12

I have a lot of buyer’s remorse over upgrading to Dragon 12. I found that the software was much less user friendly and entirely incompatible with the internet either for typing or navigation. If I tried to use Dragon with the internet, rather than obeying a command or typing in a text box, it would open another box type whatever I said and then I would have to click through to transfer the text to the web. So it had no navigation capability and an overcomplicated way of entering text. According to the product description, this is not how the software is meant to work so something was going wrong. My attempts at communicating with tech support were fruitless.

While I got nowhere with tech support. I was regularly called by sales begging me to upgrade to Dragon 12 from 11. As I had already done this, these repeated calls were frustrating as I explained each time that I had already done so and registered my new copy. I received at least five such calls before I demanded to be removed from their phone list.

As song as I was only dictating in Word, it worked as well as Dragon 11 but heaven forbid I needed to change tabs to check something in another program or particularly if I needed to check something online. Even if I turned off the microphone. Doing anything other than dictating while the program was active would initially slow both the program and my computer and ultimately cause Dragon to freeze, forcing me to forcibly close it through task manager and restart it. This issue deteriorated to the point that Dragon would crash on it’s own every 10-15 minutes. This eventually forced me to request the only assignment extension of my entire Masters degree because it was so time consuming.

Dragon 12 was a complete failure in functionality.

Issues in both versions

Accuracy, all versions claim to have accuracy rates over 95%, this has not been my experience at all,. Even after longterm use (accuracy is supposed to improve as you use the program more). This might be due in part to the highly academic work, I most commonly use it for, it recognized the word obstetrics as Star Trek. Often if you don’t catch errors immediately but find them later during editing it is difficult or impossible to discern what the intended word or phrase was to begin with.

I have a BA Honours in Women and Gender Studies and I occasionally wrote about issues of gendered and sexual violence. I found that the software was more likely to misinterpret words associated with violence. It really didn’t want to recognize the word rape for example. It wrote thing like grape or great. The software does have word training where you input the word and then train it to recognize your pronunciation of that word. Even with training it still didn’t want to accurately recognize the word rape. There is something disconcerting about yelling the word RAPE at your computer in frustration even if no one is around to hear you.

International English norms

Nuance and Dragon hate Canada, I can think of no other explanation. When you first use the software, you have to train it to recognize your voice. You help this along by setting your location so that it knows what accent to expect and what spelling is preferred. I don’t even know why there is a separate option for Canada because during selection it says in brackets that Canada uses American spelling. This is not true. Canada follows the British spelling system. Unfortunately selecting Britain isn’t a great option either because although we share spelling norms and say Zed instead of Zee, we use American terms for punctuation. We say period to denote the dot at the end of a sentence rather than full stop like the British. This causes issues of flow while dictating.You can’t change the settings in the software to change punctuation commands.

I am to fully programmed to use North American punctuation to be able to use the British settings. Using the Canadian/American setting causes it’s own difficulties that go beyond my frustration with being forced to adopt American spelling. If a word isn’t in Dragon’s dictionary (which happens a lot with academic terms) you can add them by dictating the spelling, You better just hope that the letter Z isn’t involved. I constantly forget that Americans say Zee, so I’m yelling Zed at my computer with no results. It’s beyond frustrating and a genuine flaw in the design of the software.

The fact that the software set up has to put in brackets that they assume Canada uses US spelling suggests that they know we don’t and just don’t care to set up a properly functioning set up for us. This despite the fact that they acknowledge the Britain does use another spelling and terminology and gives the preset options. You can go in and change the dictionary to reflect Canadian spelling but that is time consuming and quite frankly you shouldn’t have to. This is a huge oversight on the part of the software designers and it needs to be fixed.

Conclusions

When the software works it doesn’t seamlessly replace typing but it is a great option for those who can’t type or want to limit their typing. When the software fails it can be a big problem for the users who rely on it. There are some flaws in the software that I genuinely hope the designers will fix (though considering my experience with customer service I’m not holding my breath). They have now released Dragon 13 which I haven’t used and my attempts to see if they fixed the language flaws have been fruitless so I’m going to assume that they haven’t.

I start my PhD in the Fall and I will need to replace my Dragon 12 because it causes more problems than it solves and I may have to research the competition while searching for a replacement.

This post was typed single-handedly because my copy of Dragon 12 is unusable.