Category Archives: Awareness

Wheel-Trans

Turns out the TTC has been using video- surveillance from their Wheel-Trans vehicles to conduct ‘investigations’ into misuse by riders and not notifying riders that they were doing so. Reviews have been conducted by an independent panel using only visual observation of a small fragment of a rider’s true lived-experience to determine eligibility for service use. No medical evidence, no interview of the rider, nothing. They just looked at someone for a few minutes and formed an opinion of that person and their abilities.

I would be interested to learn whether the panel even considered where the riders traveled to using the service. I would bet that the majority of use was to medical appointments, banking, groceries, work, or other necessities. Not that this matters in the slightest, if a person with a disability wants to use the service for purely social matters like visiting friends, that should not be an issue, but I would just bet that the majority of use was for necessity purposes and would serve as additional material in defense of rider.

And, as Toronto Ombudsman Fiona Crean stated in The Toronto Star’s “TTC suspends use of Wheel-Trans security camera footage to weed out ineligible users” by Paul Moloney*, “There are lots of diseases where one day you’re okay and the next day you’re not.”  Many people with disabilities, specifically those incorporating chronic pain, are often only able to be seen ‘in public’ on ‘good days’, so basing a decision on eligibility simply on one short video is a ridiculous assumption that this would be standard representation of that rider’s mobility or eligibility. On days where a rider might ‘appear’ eligible, the rider is most likely unable to use the service at all. There is no video evidence of those days. Basing an opinion solely on visual observation of only a few minutes in a riders entire lived-experience is ridiculous beyond words. Not allowing ‘suspect-riders’ the opportunity to even present medical evidence or address the independent panel doing the review is problematic on a multitude of levels.

Obviously there are other serious issues with questionable issues including: failure to adequately notify riders of the true use of such video surveillance; failure to notify riders of investigations against them; and questionable resource allocation on behalf of the TTC on investigations rather than on barrier removal and increasing overall accessibility. According to The Star, 54 out of 47,000 riders were found to be ineligible during the TTC’s investigations. Hardly a high-percentage of TTC deemed ineligibility and certainly not enough misuse of service to warrant the allocation of such resources. Considering the fact that other than door-to-door service, there are no additional benefits to Wheel-Trans usage over their conventional modes of transportation, including cost it is not surprising to find such a low percentage of misuse. In fact, there are so many disadvantages to using Wheel-Trans that it seems obvious use would be only by those requiring it, with no other options.

Fortunately, the TTC has accepted the Toronto Ombusmen recommendations and has suspended the practice of using the video surveillance for review of eligibility for the time being. It will also be notifying all riders deemed ineligible since 2011 to invite re-application for usage. Not good enough by a long-shot.

Simply observing someone for a few minutes before forming an opinion of them and their abilities is wrong. Affecting someone’s quality of life based on this opinion is unconscionable.

 

www.rollamile.com

 

*The Toronto Star: TTC suspends use of Wheel-Trans security camera footage to weed out ineligible users, By: Paul Moloney City Hall Bureau reporter, Published on Wed Jul 10 2013.

‘Running’ a Business in an Inaccessible Environment

Having run my own business and marketing consulting firm for decades, I knew when I started my accessibility firm, that there would be challenges. I expected, and have encountered, many of the expected challenges: raising capital, keeping up with technology, employee and human resource issues, time-management, the usual challenges for start-up businesses.

I knew that as a fledgling industry, I would have extra work to do educating potential clients about need. I knew I would have to overcome price objectives and the negativity surrounding ‘legislated compliance’. Businesses aren’t fond of spending money, especially when the government makes them, regardless of the purpose. They must first be educated about the huge return on investment that accessibility provides. The benefits accessibility has for all of their customers. Accessibility increases corporate perception, customer loyalty and sales, and unlike the mis-perceptions about cost that abound, do not have to cost a lot. And again, the return on investment is huge. I was just tweeting this evening with a gentleman about the many benefits of simply having a few chairs available for customers. Sit, stay, spend. For a multitude of reasons and for the benefit of many, particularly the bottom-line. There are numerous small things that can be done to remove barriers and increase accessibility, and they don’t have to cost very much. To paraphrase: If you build a ramp, they will come.

What I was not expecting was how many barriers to access would exist for my business and how affected it would be by inaccessibility.

I tried, for example, to join the local Chamber of Commerce, but couldn’t as I would have been completely unable to gain entry had I been using my wheelchair. Fortunately, I was able to use my cane to avoid a meeting in the parking lot where it was snowing quite hard at the time. But still, I cannot, as an accessibility firm, support a Chamber that is entirely inaccessible.

I have gone to an untold amount of business meetings where using my wheelchair would have been quite impossible in terms of accessibility. The latest came during a round of pre-event meetings for a local event I was to be speaking at. Despite my topic being about wheelchairs, I arrived with my walker to find the meetings being held on the second-floor of a Victorian-home converted to offices. Again, I am fortunate that I was able to return to my car and grab an alternate assistive device, my cane. I have to mention that the organizers were more than accommodating, offering to move the meeting to the main floor, etc. But that would have been way too much of an effort as everything was set up in the upstairs boardroom already, and I have already caused too much additional unwanted attention at this point.

Ironically, the event venue itself attempted to be accommodating providing a ramp for my sole-use, but this ramp proved completely inaccessible, even the cameraman had difficulty WALKING up the steep slope. Again, I resorted to using the cane I now keep attached to my wheelchair for such frequent occurances. I am fortunate that I have other options. I cannot image the added difficulties not having my additional assistive device options would pose for me and my business. Again, I note that both the organizers and the event tried to be accommodating and I am grateful for any accommodations, I just prefer accessibility and independence.

I encountered similar problems with every attempt to attend networking meetings. They were either entirely inaccessible (I myself have had difficulty finding accessible venues at which to host my own events), or I encountered what I call the ‘red-sea syndrome’ that occurs at most events, and makes networking in a wheelchair quite difficult. Many people are quite hesitant to approach someone sitting in a wheelchair, so I will usually be the one to approach others and introduce myself. I have found that approaching a small group of individuals and casually inserting myself into the group, and then conversation, quite impossible. Inevitably, someone will notice my chair approaching and a polite, ‘parting of the seas’ will occur as everyone re-adjusts to allow me to pass. This is nice of them. Unfortunately, at this point I find it quite difficult to casually insert myself into the conversation and will sheepishly, roll-on past, thanking them as I do. It may not be the chair, it could be me, but it’s easier on my self-esteem to blame the chair.

What does seem to work is finding another individual standing alone and approaching them with something along the lines of, “Hi, I’m Donna, I don’t like sitting alone at these events so thought I would come over and introduce myself”. Individual approaches seem to work better for networking, though can occasionally strike fear in the eyes of those being approached when they realized I have signaled them out. I don’t think this is a reaction to my disability in any way, but an innate, networking event reaction for most.

I have a feeling too, that many potential customers are hesitant to approach us for fear that they are not currently accessible. They are unaware of the many mobility options available to me. Plus, they are calling inquiring about accessibility, this positive fact outweighs the obvious fact that if they are looking to increase accessibility, they may not currently be so. But I am hesitant to ever play the D-card as an excuse for my business, and honestly, there are many other reasons that a potential customer might not call.

I am not sure why I was so surprised by that inaccessibility affected my business, inaccessibility affects my daily life, and I suppose, for us especially, success lies in literally being able to get our foot in the door.

www.rolllamile.com

Nothing to Wear – Accessorizing Accessibly

For many, dressing everyday takes on additional considerations. Again, I offer only my personal experience, and all of the following is dependent of course, on my physical capabilities for the day, but for this, we will assume that I am having a good day. I also want to acknowledge my gratitude at the fact that I am still able to drive and have the ability to opt for other options aside from my wheelchair. Having these options is something many do not, and I appreciate the fact that I do. I am also grateful that I have the assistive devices that I require, including a scooter. Many are unable to afford the items that would ease their mobility. I am also still able to lift my own walker and wheelchair in and out of the back of my car, this alone makes much of my mobility as it is, possible.

My process requires the answers to several questions,

Where am I going?

Like most, this will dictate several decisions regarding apparel, but not in the usual sense. This next question is actually the more relevant for me..

Have I been there before?

If not, I will usually opt for my walker as it provides the benefit of being more portable than my manual wheelchair, as well as providing an always-available-seat* that my cane(s) do not.

If I have been there I am obviously better able to assess the accessibility and pre-aware of barriers. I will know whether ample seating and short walking distances are involved and perhaps be able to use only my cane(s).

I have found that calling ahead to determine accessibility is useless and usually just serves to complicate the whole process. Either the person on the other end answering will be unaware of what actual accessibility entails, or they will attempt to over-accommodate. One example of over-accommodation was when I called ahead for a mammogram to see if it was possible to sit for the procedure or how long standing would be required. As it was at a hospital, accessibility for wheelchairs is usually pretty good so I also advised I would be using my (preferred method) wheelchair. When I arrived the entire waiting room had been re-designed to accommodate a wheelchair and subsequently re-arranged immediately following my being taken for the appointment, serving mostly to make my wheelchair use a spectacle. I mean a hospital, particularly the radiology department must see its fair-share of patients using wheelchairs. Having now had one, I have used my walker for all subsequent exams and not called ahead.

These are my major decisions regarding accessorizing with assistive devices, but there are additional accessorizing considerations. The easiest of my devices are my canes, but I find that when I use just my cane, people (strangers) frequently ask, “Oh, what happened?” a question I have not been asked when using my walker or chair. Aside from one nurse at the emergency room who remarked “you really need a wheelchair?” when I borrowed a courtesy one from the hospital which was easier than lifting mine from the car. Unsure of how to answer, I simply pulled out my parking pass and said, “I left mine in the car”. The most difficult to use is my manual wheelchair, though it is the easiest for me in terms of comfort, and the difficulties lie only in barriers and inaccessibility, and are unrelated to my disability or manoeuvring of the chair itself. I would prefer to use my chair in almost all situations, but usually it is easier not to. Again, I am blessed I am able to exercise other options, but frustrated by the requirement to do so.

Some other accessorizing accessibly considerations:

Purses. The best option is always a cross-body strap so that my hands are free for other purposes, like walking on (canes, walker, manual chair). A single-shoulder purse usually just slides down the arm. Clutches and handbags are out of the question, unless I am using the walker, where they can be stored in the seat (another advantage of the walker is that it comes with a small amount of built-in storage).

Shoes. Sadly, flats are now the only feasible option. Plus, wearing my stilettos while using a cane or walker looks ridiculous, aside from being quite dangerous. So flats it is. I miss my Pretty Boots, but would miss walking much more and so I happily wear flats.

Eyes. Glasses are my latest assistive device and remembering them and their accessories is proving to be an ongoing process.

Toes / Feet: A long time ago I realized that when I used my assistive devices, people would look at my feet first, and then my face. So I started painting each of my toe-nails a different colour in sandals, or wearing mis-matched socks and quirky shoes, just to have a little fun with people.

Jewlery. If I am using my cane, I cannot wear bracelets, for some reason these tend to get caught and broken by the cane. Being a clutz is part of the issue, but the cane contributes. Rings can be uncomfortable if I am going to be doing a lot of manually wheeling the chair.

 

*walker use: assuming it is not raining, if raining, a slip-cover or plastic bag is required to keep the seat dry while walking outside. Holding an umbrella while using both hands with the walker provides additional difficulties, and quite frankly, the umbrella hats look a little ridiculous when not on a beach.

 

www.rolllamile.com

Experiential Teaching

Our talk at IgniteGuelph seems to have revitalized discussion surrounding the benefits of experiential teaching methods such as empathetic models and simulation exercises, and the opposition to these by many in the disability community which I hope to address here.

Our session at the University of Guelph on Accessibility Education a month after the IgniteGuelph event looked at a dozen and a half examples of accessibility curriculums. The majority of which included experiential teaching methods, and all of those lauded the benefits as well. In fact, in the medical education system, where accessibility and disability education has enjoyed the longest history, the use of standardized patients is now a “mainstay” and the “substantial majority of medical schools use the standardized patient exercise to teach clinical skills and / or to assess clinical competence” and “the strengths render the standardized patient approach particularly well suited for teaching students about disability”.

The reasons for including experiential methods when teaching disability to medical students are numerous. One Occupational Therapy program used the days students spent in wheelchairs to both see what future patients encounter in terms of barriers but also to which muscles are required to maneuver and use the chair itself. But perhaps the two most important benefits of including experiential methods to teach disability to medical students is that the “allow for “teachable moments to be created, rather than waited for” and “reinforce role of patient as authoritative source of knowledge”.   

Two of the biggest arguments against experiential teaching methods are that they focus primarily on the limitations of disabilities and that disability can’t be taught.

Now I could use dozens of quotations extolling the virtues of experiential education by scholars, staff, and students but prefer instead to deal with my own personal experiences and motivations. What follows is not meant to be a justification, simply an explanation of our motivations for using them and what we see as the benefit.

I think that it is the objective of the teaching that is the most important factor in the debate, not the actual use of techniques themselves. At Roll a Mile, our use of such training methods is to increase awareness about accessibility and barriers to access. We are not attempting to teach about disability, we are trying to increase accessibility. Awareness is key to doing this, and while a few minutes spent ‘rolling a mile’ in a wheelchair will never get close to illuminating all of the accommodations, adaptations and barriers faced on a daily basis by someone who uses a wheelchair regularly, but it can raise awareness. And raising awareness is a good thing when it comes to barrier removal and increasing accessibility. I suppose my motives are selfish really, by raising awareness and increasing accessibility, I can more readily buy toothpaste.

I agree that disability is difficult to teach. To accurately simulate chronic-pain one would have to inflict constant, yet random, blows to the body with a baseball bat all the while having young children scream continuously in their ear. According to a jury-of-my-peers, this is not permissible. But seriously, using chronic, debilitating pain as an example, it would take years to properly simulate. Literally years. Years of slowly having every aspect of one’s life affected. Of losing family, friends and worst of all, your ability. Years to go through the stages of grief as you mourn the life you thought you would have, the functions you’ve lost. Years of losing your job(s), your savings, your car, your house, and your independence. Years of learning acceptance, adaptation and working within limitations. Years of adjusting to frequent medical visits to be poked and prodded, to have fluids removed and injected. Years of tests, and doctors, and the whole dysfunctional healthcare system. It would take years to properly convey to someone what living with chronic pain is like. Truly replicating any disability is impossible. Especially considering every disability is as unique as the individual with them.

And as for the concern that empathetic models tend to focus on the limitations of disability, I cannot help but strongly disagree. In my experience, anyone that ascends a ramp using a manual wheelchair, cannot help but gain a new awareness, appreciation and even admiration for anyone who does so on a regular basis. However, the use of terms like “capability-compromising exercises” does not serve to help the cause. At Roll a Mile we use “differing circumstance” models and simulation exercises that, rather than only exposing limitations, focus on adaptations and accommodations while providing firsthand familiarity with barriers to access. And it is this first-hand experience that we feel enable our participants to not only learn more, but to retain and engage more.

Teaching the rules and regulations of accessibility and the A.O.D.A. are important, but so to is ‘going beyond the building code’ to understanding the rationale behind the regulation. Accessibility needs to be presented from more than just that of policies, procedures and physical structures. We go beyond compliance as legislated accessibility is not actual accessibility.

Unfortunately, unless personally affected, most simply aren’t aware of issues of accessibility. And the truth is that most barriers to access exist simply as a lack of understanding, not an act of malice. The example I like to give for that is a local medical facility that had put a small table to act as a sanitation-station outside the entrance to an office. In this instance, the Building Code required clear-space, but really, doctors and nurses cannot be expected to know the Building Code, let alone how much additional effort is required by a person using a manual wheelchair or walker to gain entry when there is no clear space. Simply bringing this to the attention of the correct person resulted in removal of the barrier. Awareness is key to accessibility. And first-hand experiences can raise awareness significantly.

At Roll a Mile, our desired outcome is not to teach disability, but to increase awareness about accessibility and barriers to access. Our sessions and scenarios are tailored to reflect workplace realities so staff are able to provide proactive, adaptive, accommodating service and strive for understanding and awareness over empathy or pity. And we use empathetic models and simulation exercises to do it, because we truly believe their benefits outweigh their negatives.

www.rollamile.com

First, they came for the strollers and I didn’t speak out because I didn’t use a stroller….

On Tuesday last week, Global News’s Minna Rhee reported a story regarding the banning of strollers from certain spaces, in particular doctor’s offices, ‘War on Baby Strollers’ (http://www.globaltoronto.com/video/wars+on+baby+strollers/video.html?v=2339063245&p=9&s=dd#stories).

Within the medical building featured in the news story, several pediatricians’ offices within the building had a no stroller’s allowed policy. This resulted in stroller-lined hallways throughout the building. Dr. Aaron Lindzon, a pediatrician interviewed conceded it was, “basically, it’s a space issue”.  The story concludes with “the bottom line is, ask in advance, and don’t be surprised if the doctor asks you to leave the wheels behind, and points out that leaving the strollers in the hallway contravenes the Ontario Fire Code which requires they be clear of impediments.

But the policies of banning strollers concern me greatly, and should be considered an accessibility issue. The use of assistive devices should be permitted in all spaces, and strollers could technically be considered assistive devices. If my wheelchair is permitted, so should a stroller be. They are both mobility devices. And I know a few mothers with disabilities where in that circumstance; the stroller would become an assistive device for the caregiver. I suppose the caregivers of those babies-in-strollers could also technically be considered personal support workers. As well, a person in a wheelchair would not be able to access the stroller-lined hallway in the story, which is a huge issue, and not just in an emergency situation. The strollers themselves become barriers to access.

Awhile back there was a news item out of Ottawa where a bus driver on the public transit system required a woman, her baby, and stroller to disembark a bus in order to accommodate a passenger using a wheelchair. The bus company issued a statement to the effect that the driver had misinterpreted their accessibility policies and the bus line staff would receive more training on the policies.

The aim of the Accessibilities for Ontarians with Disabilities Act, (A.O.D.A.) is for an accessible Ontario by 2025. Progressive implementation of the Act will result in more accessible physical spaces going forward and, hopefully one day, all spaces will be accessible. Benefits and opportunities for all are presented by accessibility, inclusion and diversity, and the unexpected benefit of accessibility on society as a whole is known as the ‘curb-cut phenomenon’. Named from the cuts in curbs originally for wheelchairs that benefited strollers, bicycles, delivery carts, and more. In fact, the typewriter, telephone, tape recorder and email were all developed by, or for, persons with disabilities, and have benefited everyone.

But for now, some common sense approaches could greatly benefit accessibility and strollers. For example, if you are a pediatrician, you should be aware that your patients come with apparatus and find office space accordingly. Medical buildings in particular should know that a large percentage of persons visiting the facility will be ill, have a disability or chronic condition, or use assistive devices. It is a medical facility.

So as an accessibility advocate, I am officially on the side of strollers. And there is, another reason that I think the banning of strollers should become an accessibility issue, if you take the case of the Ottawa bus incident, I do not want to see persons with disabilities demonized by being pitted against babies. Accessibility is not about preferred access it is about equal access.

It should be noted that I am not saying that a person in a wheelchair is in a similar circumstance to a baby in a stroller, certainly everyone has very different mobility options, I am only saying that in terms of accessibility and assistive devices, accommodation should be made for both. Accessibility for all, cradle to grave.

www.rollamile.com

Accessible Terminology

Normally I am of the opinion that there is too much time spent focusing on superfluous items such as appropriate terminology than on implementing actual accessibility, but there are a few glaring exceptions.

Invalid, for example, is one I dislike especially. Broken down, it quite literally is in-valid, meaning not valid, of no importance. And I’m sorry that my brain doesn’t always communicate effectively with the rest of my body, but that doesn’t invalidate me as a person. Confined can be bothersome, people are not ‘confined’ to, or by, wheelchairs (they are, confined by lack of ramps). Gimp reminds me of camp crafts and cripple of potato chips.

And truth be told, it is not the words themselves that bother me, but the attitudes behind the words. It is the attitude we must address, enlighten and overcome, not the words. And quite frankly, I really don’t care what you call me, I just want to be able to buy my own toothpaste. But I do care what you call others, and any word, when used to name-call, becomes negative. Again, not the word itself, but the motive behind the word.

But it is entirely different with the r-word. There is no need to use the r-word. Ever.

In a clinical sense, the word means slowed development. But as language continues it’s constant evolution, the r-word, like many others, has changed. The clinical definition was first adopted by society as a reference to people with intellectual or development delays. Like all labels, it is limiting, but also insulting and hurtful. There are many, many great articles and activists out there who express far more eloquently than I ever could, exactly how hurtful and hateful this word is, and I will link to a couple at the end of this post. The r-word should not be used, ever. There is no need, even from a clinical perspective or physics principle, there are other words we can use.

Today we see the word used as a slang substitute for stupid, ridiculous, idiotic.

For example, “I can’t believe the restaurant did that, it’s so r-word” or “you’re acting so r-word”.

To understand exactly how the connotation of this word has changed, and how inappropriate the use of it now is, try this; substitute a race or religion instead of the r-word in the example sentences above.

Get it now?

The meaning of the r-word has changed from meaning ‘slow development’ to meaning ‘ignorant’. As in, if you are still using the r-word, I think you sound ignorant.

Politically correct isn’t about trying to limit speech, it’s about trying to expand vocabulary to be inclusive.

http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

http://www.r-word.org/r-word-resources.aspx

Blog #2: Accessible Terminology, a Post-Script on PwD

A quick post-script to our previous blog on Accessible Terminology, there is one more term of reference I take issue with.

The A.O.D.A. advocates using the reference term ‘person with a disability’ and while I completely appreciate the sentiment behind it, putting the ‘person’ before the ‘disability’, I have two issues with it.

The first is that my disability comes before everything else. It comes before my being able to attend my son’s graduation, my ability to access buildings and businesses to do my job or perform daily functions of life. It came before my ability to join my local chamber of commerce. I am not whining or complaining, just stating a fact. My disability even dictates my fashion choices. For example, I now have to wear flats with good grip and not my pretty boots. Cross-body strap bags and purses free my hands to hold whatever assistive device I might need them for, ie) cane, walker, scooter, wheelchair. These are just simple facts of life and I truly am not complaining for I have a wonderful life, but my disability affects every single aspect of it. So for me, putting the person before the disability is a token gesture, while I truly appreciate the acknowledgement that I am indeed a person and not a disability, it is not going to relegate my disability to the background.

My second issue is that ‘person with a disability’ is cumbersome in both conversation and writing and has been shortened to ‘PwD’ in most references. Like any industry, we already have our fair share of abbreviations; A.O.D.A., a11y, O.H.I.P., O.D.S.P., P.S.W., but aside from PwD adding yet one more, it also tends to relegate us into one. We are now PwDs. Most persons with disabilities, have already, in a sense, become relegated to being abbreviations; A.D.D., C.P., M.S., C.O.P.D., A.L.S., M.D., C.F., F.M.S., we don’t need to be further reduced. However, a friend has recently convinced me to embrace the abbreviation, “After all” she says, “we earned those letters after our name.”

Some scholars earn a C.A., PEng or PhD designation, we at Roll a Mile will be changing our business cards to read: ‘Name, M.S., PwD’ or ‘Name, C.P., PwD’ and will be wearing our PwD designations with honour.

And if we are to be referred to as ‘person with a disability’ then it serves that people lacking a disability be referred to as ‘person without a disability’, or abbreviated, P-wod.

www.rollamile.com

Counting Backwards

And suddenly he is a ten year old. Able to use power-tools, but not unsupervised. He is smart and has great ideas, but some just aren’t feasible.

And the ten year old is suddenly six. He can be left to his own devices for short periods, but cannot be left alone. He is curious about what things are, and how they work.

And the six year old turns three. He struggles with the words to express himself. He sulks and removes his diaper, peeing around his room. Logic is not formed. Full of wonderment and fear at the world around him, but without the words to ask why.

He is two now, and striking out at the world around him. He takes apart the phone, but no longer to fix or figure out the workings, but just because it is there, and he can. The physical dexterity is there, but not the workings of complex inquiry or reason.

The toddler will become infant again. Reduced to sleep, sustenance and bodily functions. He will not have mobility, and be constrained to bed.

Through all but the end there are momentary glimpses of the man he will become. The husband and father. Scholar, teacher, neighbour and friend. But these become fewer, and farther between.

Alzheimer’s doesn’t just rob us of time, it turns it backwards.

Daddy I love you and will remember for us both.

dmj

www.rollamile.com