Via Rail Pushes Back on CTA Ruling on Tie-Down Spots in Passenger Trains

So I was puttering around  on Twitter on Sunday, trying to get an account that I’ve let go shamefully neglected up and functional again…and a long-time colleague (from the US) tweeted a Canadian story about inaccessibility that just made my blood boil. So I abandoned Twitter to rant a bit about Canada’s national passenger train carrier, Via Rail.

With many thanks to Deb. 🙂

Content Note: Accessibility issues, ableism, transportation

Via Rail train, locomotive the most visible (blue, yellow and gray with VIA in yellow block letters across the front) sits in the train yard.

Image Description: Via Rail train, locomotive the most visible (blue, yellow and gray with VIA in yellow letters across the front) sits in the train yard.

I’ve traveled with Via Rail many times, both as a non-disabled passenger and a passenger using a wheelchair, and found them lovely to deal with. However, when I was using a wheelchair, it was a manual chair that could fold up, I could easily transfer in and out of it, and I could walk for short distances using my cane. I was not in anywhere near the same position that married couple Marie Murphy and Martin Anderson are in: They both use electric scooters because of mobility difficulties caused by cerebral palsy. And the fact that VIA trains have only one tie-down space for an electric wheelchair or scooter per train really impacted the amount of traveling they could do together, unless they were willing to have one person’s scooter’s dismantled and treated as luggage. Given that scooters are very expensive (and that airlines that dismantle wheelchairs and scooters  have a bad reputation for damaging them), I understand why handing one’s pricey mobility device over to strangers to be taken apart doesn’t sound like the most attractive of options.  Both Murphy and Anderson have had their scooters damaged because of being put in storage on Via Rail trains.

And the Canadian Transportation Agency agreed with Murphy and Anderson when they formally complained that VIA’s policy of providing only one tie-down spot per train was discriminatory.  The CTA ruled that “all trains coast to coast must double their capacity to accommodate mobility aids and create two tie-down spots.”

Via Rail countered with a policy change:

  • They’d make it possible for two mobility aids to use the one tie-down area, provided that both passengers could safely transfer in and out of a standard seat for the trip.
  • A customer needing the tie-down area who couldn’t transfer to a standard seat could “bump” another mobility aid user from that area, even if they’d previously reserved it.

However, on further questioning, the CTA discovered that Via Rail’s policy change came with some caveats:

  • Via Rail only intended to implement this policy on trains on trains on the Quebec-Windsor corridor (the corridor along which Murphy and Anderson
  • It would be implemented only on three specific models of train.

Not good enough. On Nov 1, the CTA “ordered the company to either add tie-downs for all trains across the country or present clear arguments as to why doing so would create undue hardship.”

At this time, Via is “analyzing” the situation.

Meet Me at Camera Three, Via Rail

I’ll make this really simple for you.

Marie Murphy and Marin Anderson want to be able to use your trains together with reasonable assurance that their mobility aids – which they rely on to get around; these are not a luxury item –  will come out undamaged at the end of the train ride. They want to do so because they’re married and enjoy traveling together; right now they’re taking separate trains to the same destination when they travel.

They decided to do something about this. They went through the proper channels, like we’re all told to. They made a complaint, they waited for a decision – they followed all the rules. And the CTA agreed that they were right, and put some rules in place for you. But you didn’t like the new rules, so you decided you just wouldn’t follow them, and made a “policy change” that you hoped made it look like you were doing something, but was only designed (badly, I might add) to make the complainants shut up. So the CTA had tell you, “Hey, you’re not following the rules we laid out, and unless you can come up with a pretty convincing reason why you shouldn’t have to, you’re gonna have to start.”

You know what all this makes you look like, Via Rail? A mopey toddler on the brink of throwing a tantrum because the grown-ups at the CTA aren’t letting you have your way.

I really thought you were smarter than that.

I thought you were more committed to Canadians – all Canadians, not just the non-disabled ones.

I’ve always liked you, Via, Rail, but this stinks. Grow up.

 

My Brain AVM: Winter and Accessibility

We had snow in my area yesterday. There’s no dodging it anymore: Winter is on its way. Winter changed a lot for me after my brain AVM surgery and stroke.

Content Note: Ableism, accessibility, brain AVM, call-out, stroke, winter

Close-up on a large shovel full of snow.. It's held by a man in a beige jacket, navy gloves, and jeans. Keyword: Brain AVM

Image Description: Close-up on a large shovel full of snow.. It’s held by a man in a beige jacket, navy gloves, and jeans.

I’m one of those annoying Canadians who would be perfectly happy with sweater weather all year long. Heat’s a seizure trigger, so humid Ontario summers make me nervous and uncomfortable. I’m not especially bothered by the cold weather in winter, but I don’t like snow and ice, especially since my brain AVM and stroke.

Like, I really don’t like snow and ice.

Especially when it accumulates – on sidewalks, on stairs, on wheelchair ramps, in banks that I have to step over to get from my ride to the sidewalk. Sometimes it accumulates because it’s falling so fast and hard that there’s no point in trying to clear anything or make surfaces  safe for walking until there’s a break in the onslaught, and it’s on those days that I don’t go out unless it’s necessary, and do what I have to do quickly so that I can minimize time on slippery surfaces if I must be out.

I know that there are days when it’s almost impossible to keep surfaces clear, which is why I’m so impressed by businesses that try, and why I’m more likely to spend my money in them. But if I have to be Accessibility Bitch with a business about the snow/ice on its stairs/ramp that’s obviously been accumulating for a couple of days or more…especially if I have to do it repeatedly….rest assured that not only will I stop frequenting that establishment if at all possible, I’ll also let people know why I did so.

Here’s why:

I Won’t Go Where I’m Clearly Not Wanted

I’ve said this before a couple of times in my post-brain AVM surgery years, but I think it bears saying again: Not keeping stairs and ramps clear in winter whenever possible says to me that I should probably look for another way to get what I’m looking for; if you really cared about what I have to offer, you’d make sure that I can get into your building.  So maybe I look for another business that wants my money, another volunteer organization that wants my time and experience, or another community group that wants my input.

I know that you don’t intend to send that message, but that’s the message I get: That what I have to offer isn’t as good as what a non-disabled person does, and therefore not worth the effort it takes to keep your entrances free of  built-up ice and snow.

That used to make me a bit sad.  But now, frankly, I’m over it. I know my worth, and if you don’t, that’s your problem. But your short-sightedness puzzles me, particularly when business is involved.

My money is just as green as anyone’s, after all.

This Isn’t Just About Me

I am a young(ish), moderately disabled person, yes; I’m not the “norm”. I am, however, living in a community with a high population of older adults compared to the rest of the province (according to Census 2016.) I actually sit on a committee of older adults trying to make my community a place where people can age well, as someone interested in accessibility issues, and the ability to get around safely in winter is definitely a concern that most committee members share.

It’s also a concern for parents with kids in strollers, and people who for whatever reason are a little unsteady when walking, and people with no mobility issues at all who are just walking a bit too fast to get out of the cold.

Here are some things to think about:

  • A wheelchair ramp that’s got snow and ice built up on it is of no use to anyone. It’s better off blocked off, in fact, until the people in charge of the ramp can commit to keeping it a condition where it’s safe for people to use.
  • When snow and ice enter the equation, anyone can fall. I was nineteen, in the days before the brain AVM surgery and stroke, fairly healthy and wearing good boots with lots of tread when I took a bad step in a snowy parking lot in Kingston and fell flat on my back. Luckily, I walked away with just my dignity bruised.
  • I’m really not as militant as I sound. If I bring concerns about an accessibility issue to you and you demonstrate that you’re willing to listen to me and take me seriously, I’ll likely go away singing your praises.  And if I see evidence of action based on our discussion – you’re aces in my books. But having to come back over and over is annoying for both you and for me.

Bottom Line

I don’t like writing posts like this, damn it, but I’m still a bit unsteady even with my cane, especially in winter, and there are many people out there who much less steady than I am and wish that more people were saying this stuff.

So I’ll keep saying it.

Just take care of your snow and ice so that we can get into your buildings. It’s not that hard.

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As America Prepares for Hurricane Harvey, a Look Back: “Hurricane Matthew, Disabled People, Emergency Planning and Vulnerability”

I wrote this in 2016 about Hurricane Matthew (obviously) but am pinning it to the top of the blog for a bit because Hurricane Harvey has got me thinking about these things again.

Please stay safe, American friends.


Content Note: Ableism, Weather Emergency, Disempowerment, Inaccessibility

Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight. Keyword: Hurricane Matthew

Image Description: Blue, circular sign that says Evacuation Route in white block letters is displayed against a blue sky, right above a blue sign with a white arrow indicating to keep going straight.

***

Because of the US election, I’ve been watching a lot of CNN these days. Last week I saw part of a press conference given by the governor of North Carolina, talking about what people needed to do to prepare for Hurricane Matthew as it moved up the coast from Florida. I was pleased to see that there was an ASL interpreter right beside the governor. And it got me thinking, yet again, about disabled people and emergency planning.

The only true weather emergency I’ve ever experienced was the ice storm that hit Kingston, Ottawa, and Montreal in 1998. I was living in a large house with 6 other girls at the time. I hadn’t acquired my disabilities yet. We were in our house the night of the storm, we spent the next night with my housemate Karen’s relatives because there was no power or heat in our house, and most of us left town the next day once travel because safe. If we hadn’t been able to stay in the house the second night, we would have gone to a shelter. Not a big deal.

It might have been if any of us had been in a wheelchair, or dependent in any way on nursing care, or on any medical supports that required electricity or water. Even at Karen’s relatives’ house, the power was still flicking on and off during the night that we stayed there.

But we were young, healthy, non-disabled, and immensely privileged. We didn’t give a second thought to what we might have done if we hadn’t been able to access help that we needed.

I thought about that last week, as I read an article by Direct Relief America about groups that will find it most difficult to get help during Hurricane Matthew. As I read it, I found myself getting alarmed; it was suddenly clear to me that it’s highly likely that the people most at risk during weather emergencies like Hurricane Matthew are disabled people.

Vulnerability During Weather Emergencies

Direct Relief identified four factors that put people especially at risk during Hurricane Matthew:

  • Compromised Mobility — The article discussed mobility not only in terms of a person’s ability to physically move, but also in terms of access to transportation and to transportation infrastructure (roads, bridges, etc.)
  • Poverty — Poverty tends make people more vulnerable doing weather emergencies like Hurricane Matthew in a number of ways, all of which can interact with each other to make the effect of any one (or all of them) more pronounced.
  • Health — People who take a lot of medication are vulnerable during weather emergencies because they may have to evacuate quickly and forget medications that may be (or become) difficult to get. Power outages may also mean that medications that require refrigeration will spoil. The Direct Relief article does talk about physically disabled people potentially not being able to evacuate, but doesn’t discuss the potential seriousness of being without required attendant care either in a home or a shelter. Direct Relief also identified hearing and visual disabilities as a potential barrier to receiving up-to-date evacuation information.
  • Language Barriers — The effect of language barriers begins with pre-evacuation announcements and can affect how entire communities receive important information. They can also “prevent residents from communicating with dispatchers and keep doctors from talking with patients in a triage tent.”

The article doesn’t talk about this, but in the high-pressure environment of a weather-related emergency like Hurricane Matthew, front line and medical staff may be less sensitive to the unique needs of disabled people (such as intellectually disabled people who may need more support to fully understand a procedure before consenting to it.) People with hidden disabilities may also find evacuation situations very difficult, as strangers may assume that they can meet expectations that their disabilities don’t allow them to, particularly in stressful times.

The Hurricane Matthew Venn Diagram That I Can’t Draw

I started thinking about all of this, and I know that the best way to show it is to draw a Venn diagram showing that these vulnerabilities intersect with each other and all intersect at disability, making disabled people one of the mostvulnerable groups in America in a weather-related emergency like the Hurricane Matthew landfall in Florida. I’m not very good at graphics, though, so I’ll have to try to explain it!

Compromised Mobility — It’s easy to see why compromised mobility is potentially a disability issue during an evacuation order. The mind goes immediately to wheelchair users (understandably), but people using canes or walkers, who are unsteady, or who experience pain when walking may have trouble moving quickly to get ready for evacuation or may be concerned that shelters in their area aren’t accessible (I’ve heard stories from friends in US about weather emergency shelters that weren’t, despite assurances that they would be.) Some disabled people can’t drive and must worry about how they will actually manage the mechanics of evacuation; this is especially true for disabled people who are very isolated from their communities, as we know often happens. Compromised Mobility intersects with Poverty — people living in poverty are less likely to have a reliable vehicle, which makes them potentially less likely to follow evacuation orders.

Poverty — In 2014, the poverty rate for disabled adults in America was 28% — over twice the rate for non-disabled adults. This 28% will potentially experience the vulnerabilities to especially hurricane emergencies, as identified in the Direct Relief article:

  • A tendency to live inland, in communities more vulnerable to mudslide and flash flooding than coastal regions (Intersects with Compromised Mobility, potentially Language Barriers)
  • Reduced ability to remain prepared for the expenses of a quick evacuation (Intersects with Compromised Mobility, Health)
  • Available emergency medical services quickly become overburdened (Intersects with Health)

When you have money, you have more options when you’re planning for these sorts of emergencies. Many disabled people do not have that sort of money to put away.

Health — I wrote about an evening where we lost power in my apartment building that made me question how well I’d get along in my apartment if the power was off for an extended period of time. I didn’t have a cellular phone at the time, and my landline ran through a wireless phone connected to base that didn’t work without electricity. I couldn’t send or check email. I was cut off. My father was in the same boat. Not a great situation for two people with health issues. I now have a cell phone and an emergency plan.

But there’s not much to it, especially in terms of evacuation, I’ve lived in my current town on-and-off for thirty years, and I’ve never known of an evacuation order being issued. But (intersection with Compromised Mobility) I have a health condition that prevents me from driving (a seizure disorder). If left to my own devices to evacuate, the shelter would have to be within 1.5 km (what I can walk) or a fairly short cab ride, and I could only take what I could fit in my travel backpack (probably enough for a week away from home — I’m a very good packer.) I don’t have meds that require refrigeration, I don’t require attendant care, and I could manage a non-accessible shelter if I had to. If I was to have a seizure, I generally have warning that it’s coming and know how to handle it and don’t require medical attention afterward.

I consider myself very, very lucky. It wouldn’t take much for many disabled people, considering associated health conditions and required medications and daily supports, to find Health barriers to evacuation overlapping significantly with associated with Compromised Mobility and Poverty, interacting with each other and making personal emergency response strategies difficult to both plan and implement.

Language Barriers — I think that Direct Relief was thinking about spoken language barriers when it wrote this section, but language barriers are certainly a potential barrier for disabled people — just because I saw an ASL interpreter at the Hurricane Matthew press conference doesn’t mean that all people on the teams involved in the evacuation process are ASL fluent, or familiar with assisted language technology, or even schooled enough in basic disability etiquette to know basic best practices about communicating with a hearing impaired person or an intellectually disabled person.

I have written in the past about my friend Ivy, who is intellectually disabled and also has a pronounced speech impairment. Even after our many years of friendship, I sometimes don’t understand what she’s trying to tell me, and we have to work it out together. Communication with officials and accurate understanding of messages about evacuation are crucial, and language barriers for disabled people are potentially just as difficult to navigate as for those who don’t speak the oral language(s) of the area.

Putting it Together

Are all disabled people vulnerable in weather-related emergencies? No. But there’s definitely a segment of the community that are going to fit into that place on the Venn diagram where Poverty, Compromised Mobility, Language Barrier, and Health all intersect, and those people are at grave risk of falling through the cracks in weather-related emergencies like Hurricane Matthew This means that people need to have personal emergency plans in place, but it also means that resources need to be available so that people can implement these plans.

It shouldn’t only be healthy, non-disabled people with the capacity to quickly and independently receive and understand all evacuation messages and the means to act on them promptly that can expect to get what they need to safely get through an emergency of any sort. This is particularly true in places where weather emergencies like hurricanes are common.

In all emergency planning, official plans need to address the needs of as many people as possible, including disabled people, who may face barriers on multiple fronts to getting to safety.

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“The Fundamentals of Caring”: Movie Review

So, this past weekend I watched “The Fundamentals of Caring” on Netflix, with more than a little trepidation (even though one of the stars is Paul Rudd, one of my favourite actors.)  This post contains major spoilers for that movie, so considered yourself warned.

Content Note: Ableism, Internalized Ableim, Cripping Up, Stereotypes, Caregiver Issues

"Fundamentals of Caring" movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. "The Fundamentals of Caring" is written just above them in dark green. All against a light green background.

Image Description: “Fundamentals of Caring” movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. “The Fundamentals of Caring” is written just above them in dark green. All against a light green background.

***

I say I watched this movie “with more than a little trepidation” because Hollywood doesn’t tend to “get it” when it comes to movies about disabled people, and because The Guardian’s review of “The Fundamentals of Caring” savaged the movie – not specifically because of its portrayal of a disabled person, but because the film is conceptually tired and very predictable: quirky people bonding/learning about themselves/breaking out of maladaptive patterns and transforming their lives on some journey that involves a a road trip at some point, a la films like “Little Miss Sunshine” and “Garden State” (both, like “The Fundamentals of Caring”, films that debuted at Sundance.) It’s a dying genre, the review notes, and the films that currently represent it either have to have a lot of star power to get going, or leads with great chemistry (which Rudd and actor Craig Roberts, who plays disabled Trevor, have in spades).

The Guardian is right about these things. “The Fundamentals of Caring” is basically predictable, at least in some ways. I really liked “Little Miss Sunshine” (I don’t remember a lot about “Garden State”…Zack Braff, I think?) so I could live with the “life-changing road trip” trope. I actually liked the way it was used in “The Fundamentals of Caring”. But what I liked even better was the way that the movie dared to show a person (a young adult – Trevor has advanced Duchenne muscular dystrophy, uses a wheelchair, and requires a significant amount of assistance with activities of daily living) who’s really just an asshole. Not an irredeemable asshole, but the sort of smug, late-teen smart ass who thinks that faking that he’s choking on a bite of Slim Jim and scaring the shit out of his caregiver is hilarious. And it also dared to show a relationship where when the disabled person is an asshole, someone calls him on it.

That’s just refreshing. Because, despite what we’re told by movies and television and writing that calls disabled people angels and implies that they’re perpetually happy and joyous and “incapable of deception” (direct quote from a person in my town about a person with Down Syndrome), some disabled people are miserable to be around, and disability does not give them a free pass when it comes to treating other people miserably.

Let’s take this example between Trevor and and his new caregiver Ben (Rudd), where Trevor is deliberately trying to get under Ben’s skin.

Trevor: Who do you think would win in a fight to the death? Me? Or a bird?

(Ben stares at the TV, looking pained)

Trevor: How about me versus a lot of birds, but all the birds had muscular dystrophy?

Ben: I think a bunch of birds with muscular dystrophy are fucking you up.

We don’t expect disabled people to be assholes. We don’t expect non-disabled people in particular to dare to actually say something about it (because disabled people have it so hard already that non-disabled people should just overlook it if they’re impolite or mean, right?) The subversion of the expectations is both jarring and humourous, and carried out very nicely by Rudd and Roberts.

Not that “The Fundamentals of Caring” doesn’t have flaws besides being predictable.

Some Issues With “The Fundamentals of Caring”

Craig Roberts isn’t disabled, which sticks in the craw of most disability advocates (and rightly so). If you’ve never heard this argument and can’t see why this is upsetting, consider how offensive society would find it if a black character was played by a white actor in blackface, as Dr. Frances Ryan wrote in The Guardian after actor Eddie Redmayne won the Golden  Globe for his portrayal of Dr. Stephen Hawking in “The Theory of Everything”. Leading roles in movies are already at a premium for talented disabled actors, and they can’t even get them when they come along. It’s a much bigger issue than people think, and it gets barely any attention in the mainstream media. If you doubt me, think about the major movies featuring disabled characters, think about the actors who played the characters, and think about the awards they got:

  1. “Rainman” – Dustin Hoffman gets Best Actor Oscar for portrayal of autistic man
  2. “My Left Foot” – Daniel Day Lewis gets Best Actor Oscar for portrayal of man with cerebral palsy
  3. “A Beautiful Mind” – Russell Crowe gets Best Actor Golden Globe for portrayal of John Nash, a schizophrenic professor and economic theorist.
  4. “The Theory of Everything” – Eddie Redmayne gets Best Actor Golden Globe for portrayal of Stephen Hawking
  5. “Ray” – Jamie Foxx gets Best Actor Oscar for portrayal of Ray Charles

So, this is an issue.

Other issues include Ben’s caregiver technique. Granted, I don’t know the standards for lifts and transfers in the US.  But I was taught that safely lifting even a older child, say,  from a bed to another surface requires either two people or a mechanical lift, or you’re risking dropping the individual on the short term and back damage on the long term. It’s not totally clear what Trevor’s age is meant to be, but he doesn’t attend school, so presumably he’s at least 18 and fully grown – Ben should not be lifting him alone. Picky point? Maybe. But I wouldn’t want to be a wheelchair user in trouble somewhere and have someone assume that it’s okay to try to lift me unassisted because he or she saw it done easily in a movie.  It’s not safe.

Nor would I want people assuming that the solution to an accessibility issue is to have people push/pull a disabled person in their electric wheelchair up a flight of stairs.  That is absolutely not something to be modeled for comedic value.

And there were plot points that made me :headdesk:. We learn, once Ben approaches Trevor’s mother with the idea about the road trip to see the World’s Deepest Pit, that Trevor has never been more than an hour from his house. I truly almost cried.

But then I thought, “What a discussion-generator!”

Discussion Questions for “The Fundamentals of Caring

I don’t know if the people involved in “The Fundamentals of Caring” intended to pack it as chock-full of jumping off points for discussion as they did, but here are the ones that occurred to me as I watched:

  • Name some media stereotypes of disabled people in this movie, and some stereotypes of disabled people generally. How does Ben react to these stereotypes? The hitchhikers? Trevor’s family? Other characters?
  • Comment on Trevor’s mother. Is she ableist? Does she realize it? Why can’t she see that she’s ableist, or why does she continue to act in an ableist manner if she can see it?
  • Are there other ableist characters or examples of ableism in the movie? Is is deliberate?
  • Does Trevor have some internalized ableism? Why or why not? If so, what contributed to it? What contributed the most to it?
  • Comment on Trevor and the idea of dignity of risk. Who was the most scared of the idea of Trevor going on a road trip? Why do you think that was?
  • Comment on Trevor and the idea of self-determination. Even though it’s hard to deny that the trip would be good for Trevor, should he have been forced to go when he was obviously so uncomfortable with the idea?
  • Is Ben a good caregiver? Is the relationship appropriate?
  • What is the role of a professional caregiver?
  • How much training should professional caregivers have? What they should be paid per hour?
  • Should businesses that aren’t accessible be penalized in some way?
  • Is Trevor a positive portrayal of a disabled person? Why or why not?
  • Why do you suppose the title of the movie was changed from the that of the novel it was based on (“The Revised Fundamentals of Caregiving”)?

And, of course, you need not ask or answer any of these questions. If you can get past the genre (which apparently The Guardian couldn’t),  “The Fundamentals of Caring” is quite enjoyable. I was surprised at how genuinely funny I found it, how few moments of disability-related-“Oh my God that’s SO WRONG” moments there were, and how many times I went “Oh! Teachable moment!”

I enjoyed it more than I’ve enjoyed a movie about disability for quite some time.

“The Fundamentals of Caring” is currently streaming on Netflix.

Addendum: After reading this interview with the film’s writer-director, I’m amazed that “The Fundamentals of Caring” turned out as well as it did. Rob Burnett most emphatically doesn’t “get it”.

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