Monday, September 29, 2014

D is for Disabilities

photograph ©Kristin Lord 2014

The dog days of late August have been a memory for the past two years due to unseasonably cool and wet weather in the northeastern provinces and states.  As we headed into Labor Day weekend, I saw no reason not to spend my last free morning taking down some overgrown foundation shrubs from a four-foot painter’s ladder, especially when routine yard work usually costs more to hire than I get paid.  “Let’s just clip the tops to my height and then saw off the base,” I thought. The first one went down quickly. No reason at all to hesitate on the three others I had in my sights, at least not until I was three feet in the air and heard a “snap” emanating from my right knee. After a few minutes of excruciating pain, I was relieved to walking toward the shed, the clippers in one hand and the ladder in the other.

Before five more minutes had elapsed, I was on the ground twice more. The ladder had long since spiraled off to the left, while the clippers narrowly missed my head. One of the neighbors, hearing my torrent of Anglo-Saxon expletives, came running and grabbed my cell phone for me from the car, while a second neighbor offered to drive me to the hospital. I was down a third time before she could get me there. On the proverbial pain scale of 1 to 10, these four falls were each at least a 9. The only way to get through this was not to fall again.

The x-ray showed nothing broken, which left me with a provisional diagnosis of a soft tissue injury. “Can I drive?” I asked the attending ER physician. “I’d play that one by ear, since you have hurt your right knee. Press down on the foot rest on the wheelchair and see how you feel.” “The foot rest is broken.” “Then try the edge of the foot rest.” “Thanks.” For once, there was no pain. I’d play it by ear, I thought, literally and figuratively. If I could press down on that malfunctioning wheelchair part, then I could probably use the piano pedal. If I could manage the piano, then I could probably drive, and if I could drive, I could work. It also followed that there was no reason to make more than minor changes at the office. Indeed, I had already solved one problem while waiting for the x-ray. I asked the ER physician for a physiotherapy requisition, got fitted with crutches, and phoned our neighbor to come get me. Meanwhile, my husband would pick up our daughter from her own work.

I got home, made my way in through the small step at the back door, and sat down to work-related paperwork. I even managed to get upstairs to bed and downstairs the next morning.

I was going to be just fine. See?! Left to my own devices, I went out the back door on my crutches, checked my safety in the car, then drove to nearby Fergus and paid some bills.

Before I did that, however, I whacked away at more of the paperwork that was sitting on my hard drive.  Little did I know that that would be no more successful at that than attacking the sapling in the back yard the day before. The Apple gurus in Waterloo, 30 minutes away, had told me a month before that I was unlikely to need any more work on my computer, but if I did, they would have to replace the memory board under warranty. Of course, the memory board took that moment to go haywire. And of course, the .05 per cent of my work that was not saved externally or emailed was the .05 per cent I needed for a letter of recommendation and for the start of term after Labor Day.

The folks at Apple were good at scheduling an appointment, once they had located my extended warranty. They even understood why I no longer had my hard drive hooked up to my Time Capsule (too many lightning strikes to the house —that is apparently a common problem). Although the staffers made no promises, they were optimistic that I could get the files onto my external hard drive and memory sticks, which I could then install on an older machine, and they even hopeful that I would have my “good” laptop back before I started teaching the next week.

All I had to do was drive to the Apple Store in Conestoga Mall by 7:30 that evening.

No, let me rewrite that last sentence: all I had to do was to check my privilege. There is no public transportation where I live. My ability to continue working while temporarily disabled was entirely dependent upon being able to drive and having access to a working vehicle. I also have a moderate amount of third-party coverage for physiotherapy, thanks to the fact that the other adult in the family has a job with benefits. Single-payer medical care got me through the hospital. My work is of the sort that can be managed by an employee on crutches with insignificant adjustments (one of my departmental colleagues worked from both crutches and a wheelchair at different times over many years). This matters a lot, since I did not have to worry about losing my job. It also matters because I might not have been eligible for workers’ compensation, given that contract academics are not usually paid over the summer and that the accident occurred at home in August. In sum, I was lucky that I did not have to ask about the law but rather was able to turn up for work on schedule.

Along the way, I discovered many other areas in which I could no longer take ordinary activities for granted —not just the running or the sports that I had planned to take up again but perhaps never can. (The jury is out on whether I will make a full recovery, or even whether I should have an MRI, for which there is a waiting list in Ontario.) Like most jurisdictions in O.E.C.D. countries, Ontario has legislation covering disabilities. Like most public employees in these jurisdictions, I have been required to attend a briefing on this legislation. Over the Labor Day weekend, I refreshed my memory about both the law and its limitations in a hurry, grateful at every step of the way (so to speak) that as these problems go, I was on the lower end of necessary accommodations, and that at least some of them would likely be temporary.

Both the law and best practices in many countries require “reasonable accommodation” to provide equal access to the complete gamut of venues, services, and activities for anyone who would otherwise be eligible if he or she did not have a disability. In many cases, there is a difference between the minimum required and what is truly equal access. For instance, the leader of our seminar at work gave the example of a blind student taking a survey course that had one chapter on art and architecture. “Reasonable accommodation” would at the minimum entail replacing the unit on art and architecture with a mutually acceptable alternative, such as having the student read a story or a play that made reference to art or architecture in addition to the plays already assigned for everyone else. A better approach would be to work with the student to make as much of the section on art and architecture as possible available in a format which that student could use, if necessary by getting expert assistance. The law, however, recognizes that there are practical limitations to what may be feasible.

Despite generally noble intentions, “reasonable accommodation” and universal access are easier concepts to develop on paper than to put into practice. Most communities have a large number of private houses that have been turned into businesses or semi-formal public places, and not all meet standards of accessibility, whether literally or in practical terms. Modern public facilities vary enormously in accessibility. Some are superb. The new main entrance to the library at Wilfrid Laurier University, my employer for the last decade and a half, was designed with universal access in mind (photograph below). It is also carefully engineered to fit into the rather awkward slope between the library and the surrounding ground and buildings. The planter at the front will have a community garden (unfortunately, not edible at this point), and there will be more seating. Cannon Design, the architectural firm behind the project, did a splendid job actualizing the desires of the library staff. By coincidence, it was opened a day or two before my accident, and was almost immediately put to use by yours truly.

Wilfrid Laurier University Library
Universally accessible main entrance
Architect: Cannon Design, Toronto, Ontario
photograph ©Kristin Lord 2014
with thanks to Nancy Willing and Gohar Ashoughian of the WLU Library for information on the project

Conestoga Mall in Waterloo and Stone Road Mall in Guelph each have an ample supply of accessible parking. In fact, they appear to have more than the two major shopping malls in the Toronto area that we visited on consecutive weekends, despite the malls in Toronto being several times larger. On the whole, I have ended up with more problems in Toronto than that good city surely deserves. I had to cancel plans to attend a large public event held at the downtown convention center in Toronto because the nearest subway station was closed and there was no place to sit down at the function.

The most egregious example of lack of access I have seen so far turned up when I phoned the Ministry of Transportation of Ontario about my temporary accessible parking permit. The staffer at the office of the MTO nearest my home, in a building that it had occupied for no more than a decade,  rather apologetically informed me that either I or someone appointed by me would have to retrieve the application from the Ministry in person, as it was not available on line. In order to get the application processed in a timely manner, I would then have to return the form with documentation, again in person. (I am unclear as to whether I could have delegated that part of the procedure, but in any case it was moot because of scheduling issues.) Doing so locally would entail walking up and down twelve cement steps. Otherwise, I could drive 30 minutes to the village of Arthur or use the outlet near my office, 30 minutes away in a different direction but obviously more convenient for me. Unfortunately, the MTO outlet near my office had a thirty-minute wait at an off-peak time and no tag and number system allowing people to use one of the few available chairs. A kindly woman let me cut ahead of her to retrieve the form, which took a matter of seconds, but it would have been inappropriate to do the same when finalizing the document, a much longer procedure. I drove to Arthur, where I was the only client there.

What works for one person may not for another. While the manager of the local supermarket was more than happy to offer put me into a motorized cart, that may be overkill for someone with crutches or a cane. (A friend who uses two canes to get around mostly shops at smaller food stores.)

Disabilities are expensive as well as time-consuming, a point seemingly lost on many of those who set the rates for people who are on longer term disability pensions. There are noticeable increases in living expenses even for someone in a short-term and relatively straightforward situation, as shopping for groceries at the deli or on line usually costs more than going to the supermarket. (Once again, I was lucky to have family members able and willing to shop from my grocery list and to have a good and reasonably-priced deli in the area.) Modifications to vehicles and housing are unaffordable for many people who need them, even in wealthy countries, unless they have access to public or private insurance. People who cannot drive often have other impediments.

I have been fortunate to have escaped the worst of what could have happened. Despite the issues of parking and access to certain venues, I have experienced a great deal of generosity from family, friends, colleagues, and medical professionals. In particular, I racked up one of those debts that can never be repaid from a friend with a more serious disability and one of longer duration. She had invited me to join her at a restaurant for lunch before she knew of the accident. On the day we met, I could not find her vehicle in the parking lot. I must have arrived first, I thought, and so I left her the one accessible spot — but in a scene reminiscent of O. Henry’s short story “The Gift of the Magi,” she had placed her own car in such a way that the accessible spot would be left for me. In the end, neither of us took it, and we each ensured that the other made her way safely from the restaurant to her own vehicle. That same friend urged me to do everything reasonable to ensure that I could walk safely without a cane or crutches before the onset of ice and snow, lest some of my leg muscles atrophy over the winter, leaving me with more permanent damage than would otherwise be the case.

We never know when we or another person will become disabled, whether physically or intellectually. Students in one of my classes once wondered about the extra table and chairs located haphazardly at the front of the room. I replied that they were probably there in case a student came in with crutches or a wheelchair, although admittedly they should be better arranged and labeled. 

The spot was occupied for its intended purpose before lunch the same day.

Some queries for Friends and Quaker organizations: 

In what ways do we ensure that we are aware, both as individuals and as a Religious Society, of the range and types of disabilities (of all degrees and likelihood of permanence, whether visible or non-visible, including health and mobility-related, psychological, social, learning, and developmental disabilities), the status of current legislation, and our moral obligations as believers in equality? Do we get competent professional advice when we are unsure what to do?

Do Quaker-related facilities meet the highest standards of accessibility law and practice? If buildings are grandfathered in under previous law, what is being done to bring them up to code? If buildings are not accessible, do Friends’ business sessions and other decision-making meetings take place in them? What about parking and public transit routes?

What procedures do your Meeting have to ensure that all members and attenders have, to the extent possible, equal opportunities to participate in the spoken aspects of Meeting for Worship and Meeting for Business? Large Meetings may have the money and the justification to install a hearing loop, but what can be done in smaller Meetings? At the very least, agendas and supporting documents can be posted and the text of proposed minutes run by people who need a written summary. Likewise, are Meetings able to ensure that those with visual impairments are able to access minutes of Meetings for Worship for Business? Can we make it possible for those with limited mobility to participate in discussions electronically?

If Meetings for Worship are held in private homes, to what extent are those homes universally accessible (at least one entrance, toilet and sink, and suitable seating)? Do the homeowners have adequate liability insurance? Do they tell people in advance about any companion animals that may be part of their household?

Do Friends Meetings take reasonable precautions concerning ice build-up (if relevant) and fall prevention?

Is programming for sessions such as Quarterly, Half-Yearly, Area, and Yearly Meetings designed to be accessible to all?

Do Quaker children and young people with exceptionalities (whether physical, psycho-social, or intellectual) have access to the same range of Quaker-oriented programming and facilities as their peers who are not so affected? If not, what can reasonably be done to rectify the imbalance?

Do nominating committees ensure that adult Friends and attenders, regardless of disabilities, have suitable opportunities to serve the Meeting and/or larger Quaker bodies? Can Friends “think outside the box” about what might constitute ideal qualifications for a position?

Do Friends label foods brought to potlucks and other gatherings, and do they try to provide a variety of options so that everyone will have something to eat, regardless of food restrictions? (Ann Arbor Meeting, in Ann Arbor, Michigan has an excellent form that can be filled in by people contributing to potlucks.)

Are Friends aware that others, both inside and outside of the Meeting, may have chemical allergies and sensitivities that preclude being near people wearing perfume and cologne?
For many with physical disabilities, back-country hiking is beyond their wildest dreams.
A trip to the local supermarket is equivalent to running a marathon.
Johnson Canyon, Banff National Park, Alberta
photograph ©Kristin Lord 2013

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