Category Archives: Lived Experience


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.


*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.

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.

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.


Seeing past the shell and through to the soul….

Cranky Old Man

What do you see nurses? . . .. . .What do you see?
What are you thinking .. . when you’re looking at me?
A cranky old man, . . . . . .not very wise,
Uncertain of habit .. . . . . . . .. with faraway eyes?
Who dribbles his food .. . … . . and makes no reply.
When you say in a loud voice . .’I do wish you’d try!’
Who seems not to notice . . .the things that you do.
And forever is losing . . . . . .. . . A sock or shoe?
Who, resisting or not . . . … lets you do as you will,
With bathing and feeding . . . .The long day to fill?
Is that what you’re thinking?. .Is that what you see?
Then open your eyes, nurse .you’re not looking at me.
I’ll tell you who I am . . . . .. As I sit here so still,
As I do at your bidding, .. . . . as I eat at your will.
I’m a small child of Ten . .with a father and mother,
Brothers and sisters .. . . .. . who love one another
A young boy of Sixteen . . . .. with wings on his feet
Dreaming that soon now . . .. . . a lover he’ll meet.
A groom soon at Twenty . . . heart gives a leap.
Remembering, the vows .. .. .that I promised to keep.
At Twenty-Five, now . . . . .I have young of my own.
Who need me to guide . . . And a secure happy home.
A man of Thirty . .. . . . . My young now grown fast,
Bound to each other . . .. With ties that should last.
At Forty, my young sons .. .have grown and are gone,
But my woman is beside me . . to see I don’t mourn.
At Fifty, once more, .. …Babies play ’round my knee,
Again, we know children . . . . My loved one and me.
Dark days are upon me . . . . My wife is now dead.
I look at the future … . . . . I shudder with dread.
For my young are all rearing .. . . young of their own.
And I think of the years . . . And the love that I’ve known.
I’m now an old man . . . . . . .. and nature is cruel.
It’s jest to make old age . . . . . . . look like a fool.
The body, it crumbles .. .. . grace and vigour, depart.
There is now a stone . . . where I once had a heart.
But inside this old carcass . A young man still dwells,
And now and again . . . . . my battered heart swells
I remember the joys . . . . .. . I remember the pain.
And I’m loving and living . . . . . . . life over again.
I think of the years, all too few . . .. gone too fast.
And accept the stark fact . . . that nothing can last.
So open your eyes, people .. . . . .. . . open and see.
Not a cranky old man .
Look closer . . . . see .. .. . .. …. . ME!!

Originally by: Phyllis McCormack; Adapted by Dave Griffith

Dear Legs

Dear Legs:

I have been informed that you have once again taken the day off . As we have previously discussed, your frequent & consistent absences from work are a serious issue and this pattern of non-attendance is not acceptable. The terms of your employment clearly specify that you be in attendance, and on-time for all shifts. I expect to see an improvement in your attendance immediately, otherwise further corrective action may be necessary.

Sincerely, Rest of Body

cc: H.R. & Personnel File

Accessibility – that’s how we roll.

In our house, lazy is a four-letter word

In our house, lazy is a four-letter word. Probably not for the reasons you think.

I once had a co-worker confess that whenever she saw a person who was overweight and using a mobility-scooter, she couldn’t help but think that if they just got up out of the chair and walked around they would loose some weight, be more mobile and no longer need the scooter. She failed to realize that for people relying upon mobility scooters, degree of mobility is not a matter of choice.

Believe me, I would much rather be walking around a big-box store than trying to manoeuvre with my walker or wheelchair. On days where I am in bed until noon, it is not a choice, or a matter of being lazy, I am physically unable to get out of bed and would rather be doing anything but having to rest. Including standing on-line at the bank, anything productive.

In fact, before mobility and pain became issues in my life, I swam five miles a week and ran two. At twenty I commuted 40 km by bicycle from the suburbs of Weston to downtown Toronto daily. As a competitive swimmer, I probably logged more hours in the water than in bed my teenage years. Lazy isn’t the issue, ability is.

Normally, I believe that when it comes to accessibility, there tends to be too much focus on terminology, focus that would be better served improving awareness and accommodation. With the obvious exception of the “R-word”, one of the most offensive terms there is with regard to disabilities. Other than in a strictly clinical sense, and preferably not even then, it should not be used. Ever.

But for me, the word lazy, has negative, failure, choice-related connotations that get under my skin. It also implies a belief in the mind-over-matter theory that can have similar connotations of failure. That if you really try, really put your mind to it, you can. And that those of us who can’t, just aren’t trying hard enough. While I am beyond-words thrilled for those who overcame a “will never walk again” diagnosis, for persons with disabilities who do not overcome the odds, imposing additional feelings of failure are neither helpful, nor healthy.

I realize too, that in our household when a step-child uses the dreaded lazy, it is most likely an innocent interpretation of their mother’s “it’s a beautiful day outside, get off the couch and stop being lazy” quote from the mother handbook. But still, it gets under my skin.

What Disability Looks Like

Several months ago a friend referred to me as being “sometimes-disabled” and I’ve been “spinning” about it ever since. I think that what he meant was that some days I suppose I look “more disabled” than others, but I guarantee you, I am constantly disabled. In fact, one of the biggest barriers I face is the fact that I don’t always “look disabled”.

My days do range in severity in terms of mobility and pain and on a “great day” I might be out without any assistive devices and not “appear obviously disabled”. On a “good day” I will usually have an assistive device, ranging from one or even two canes, my walker, or my wheelchair, depending upon where I am, what I am doing and which is most feasible. A friend with Cerebral Palsy is known to say, “The walker’s for me, the cane is for you.” By this she means that she brings her cane as it is an easier device to manage, though the walker is the most accommodating option for her.

Unfortunately, as I am not swift moving, it is on “good days” that I am most jostled by others around me in public. People just aren’t aware that you are unable to move with the ebb and flow of the crowd. On crowded subways, for example, people don’t often bump into each other as they are able to move with the crowd and adjust their paths subtly and subconsciously. As a result, I usually carry a cane on these days as a visual clue to others.

Great days and good days, I am able to be “out in the world”. Bad days I am at home, and again, this may range from working from the home office to being unable to get out of bed. There is a wide range in my days. I often joke that at least it keeps from getting monotonous, I mean the same thing every day might get tedious.

Though upon closer observation there are clues. One will note that I move purposefully, and slowly. Every movement is considered and I have to be constantly aware of my surroundings. I suffer from tremors as well, so often appear to “shake” which occasionally attracts the odd look. I have been informed that when I am in pain, I ball my fists with my thumb tucked beneath my forefingers. But you would have to know me very well, or read my blog, to know this about me and recognize it as a sign of pain. During meals I have to rest my elbows on the table to support myself and when out at restaurants, worry this is noted as poor etiquette. Similarly, when out with my mother I worry that people will think me rude for sitting in a chair and not offering it to my mother.

There are thousands of invisible disabilities, and millions of Canadians with those disabilities. In fact, with one in seven Canadians having a disability, and the majority of those disabilities being non-visible, it is impossible to know who has a disability and who does not.

~ For more information on accessibility compliance and accommodation ~

The Disabled Parking Perk

Accessible Parking Permits (APP) are perhaps the only “perk” persons with disabilities get. But it’s not the perk most people assume it is. For many, being out in the world only occurs on “good days” and even on a “good day”, a walk across a parking lot is equal to one lap around a big-box store, which may be all the stamina they have. A lot of mobility and chronic pain is about stamina and energy conservation, so if energy can be saved by not having to walk across the lot, that energy can be expended elsewhere and more efficiently. There are also practical considerations such as the accommodation of vehicles that may require more space, or the need for a curb-ramp to accommodate an assistive device such as a wheelchair.

I recently had a conversation with someone who argued that there were too many disabled parking spaces and based this logic on the argument that whenever they saw them, there were always empty disabled spaces. In fact, empty spaces can indicate the opposite, that there are an adequate number of spaces as there should always be at least one available for use. Always-full spaces illustrate that the current number of spaces is not meeting the demand for those dedicated spaces and more are needed. Indeed, many people I know who have an APP only use them when doing so is necessary, leaving the spaces for those who might need them more. As well, with one in seven Canadians having a disability, and the majority of those disabilities being related to mobility and / or pain, there really can never be too many spaces.

So what is the required ratio of disabled spaces to other parking spaces? A general rule to follow would be 5% of spaces* be designated as disabled spaces. Obviously, when determining the number of allocated spaces, the nature of the building should be taken into consideration. Senior’s centres, healthcare facilities would benefit from having a higher number of disabled parking spaces. For many, getting out is limited to necessities such as groceries, banking, and occasional shopping and so having additional available spaces would benefit persons with disabilities.

I also have to point out the need for signs to indicate these dedicated spaces. Paint symbols on the ground do work very well, however, we live in Canada and that means the paint is covered with snow for a large portion of the year. As a result, many people inadvertently park in these spaces illegally. Signage in addition to paint indicators, either on a post or hanging on the wall, ensure that dedicated spaces are properly indicated at all times.

And while we’re on the topic of snow, these spaces should not be used to pile snow from plowing. I encountered this twice last winter, once at a nearby hospital where the snowplow had not piled the snow in the actual space, but between the disabled spaces and the hospital entrance. This required going through the parking lot and back through the lot entrance, squeezing between the curb and the entrance-gate arm. The second time was at a local coffee-chain and the snow had actually been piled in the space after plowing the rest of the parking lot.

The location of these spaces is also of importance, obviously nearest the entrance to the facility is preferred. In my town, this means that for at least two of the downtown banks, the spaces are located behind the building, halfway down a very steep slope due to the riverbank.

Also – to those who truly believe that it is okay to “just stop for a minute” in disabled spaces as long as you remain in the vehicle, please stop. You may mistakenly believe that you will simply move your vehicle if someone needs the space, this doesn’t really work in the real world. You see, I have come along and needed the space, and I see you sitting behind the wheel, but I can’t see your windshield and so I assume you are permitted use of the space. So I park elsewhere. And even if I am aware there is no APP displayed, if you’re already arrogant and entitled enough to park in a disabled space you are not entitled to, I’m not about to confront you.

I have also, on at least two separate occasions, at two separate large retail chain stores, witnessed staff improperly using these spaces, once for a someone to drop off lunch to a staff member, and once by someone waiting to pick a staff member up. Please – if you don’t need the space, first, be thankful – I’d really rather be able to walk across the parking lot, and second, leave them for those of us who do.

~ For more information on accessibility compliance and accommodation ~

*not intended as legal advice, building codes and accessibility regulations vary by region