Ohio House Bill 214, Its Serious Implications, and Why I Can’t Support It

So this actually happened before Christmas, but deserves some comment, I think, for multiple reasons – the least of which being it got relatively little media coverage, given the GOP’s scramble in the weeks before Christmas to push tax reform through and to pass a funding bill that would prevent a government shutdown. But here it is: On December 15, the Ohio Senate passed a bill, Ohio House Bill 214, that “punishes clinicians for performing abortions that were sought specifically because of either a potential or a conclusive Down syndrome diagnosis“. They are the third state to put such legislation on the books, claiming that it will protect people with Down Syndrome.

The GOP is going about this the wrong way.  But, frankly, I’m not sure that they care.

Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag. Keyword: Ohio House Bil 214

Image Description: Ohio governor (then a Republican presidential candidate) John Kasich speaks to a group of supporters during a town hall event before the Wisconsin presidential primary in Madison, Wisconsin on March 28. 2016. He is a white man with gray hair, wearing a dress shirt with black pants. He stands in front of a large American flag

Content Note: Ableism, Abortion, John Kasich, Medicaid Cuts, Ohio Down Syndrome Abortion Ban, Sexual Harassment, Trump, UK Austerity Cuts

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I’ve talked in detail before about how I understand why laws like Ohio House Bill 214 seem like they  should be something that disability advocates should support as a no-brainer…and about why I don’t support them.

I know that women are routinely encouraged to abort fetuses with a Down Syndrome diagnosis.

I know that there’s a movement in support of eliminating the Down Syndrome genotype from the population.

I have loved ones who have Down Syndrome, and I’m grateful for their lives, their friendship, the contributions I see them making to their communities.

But I will never tell a woman, “Your reason for having an abortion is wrong.” It’s not my right. And I’m not the only one in the disability activist community who thinks so.

David Perry’s son has Down Syndrome. He’s made the excellent point that Ohio House Bill 214, under the guise of criminalizing abortion, actually criminalizes discussion between a woman and her doctor:

“…this law doesn’t hinge on the act of performing an abortion, but rather on whether there is “knowledge” of motivation for abortion. If the doctor is aware of a prenatal diagnosis as motivation, an abortion would be a felony. Without awareness, even if that was the woman’s motivation, an abortion could safely proceed. Therefore, the bill functions only to silence women after they receive their prenatal diagnosis—or, even worse, early pregnancy screening (note that such screenings are not accurate enough to be diagnostic)—lest a doctor begin to suspect their motivations and refuse to terminate a pregnancy.”

Ohio House Bill 214 makes it so that a woman seeking an abortion because she knows or suspects that the fetus she’s carrying has Down Syndrome is highly motivated to stay quiet about her reasons for wanting the abortion so that she’s not refused it.  And in this environment, the myths about Down Syndrome and stigma surrounding it continue to thrive – there’s no room for open, honest conversation with medical health providers and anyone who may report to them.

And, as I’ve said several times in this blog – if the GOP cared about disabled children, they would make it easier to raise a disabled child in America.

It’s also worth noting that the Trump administration is removing “guidance documents” about the ADA from its website. There was no explanation as to why, beyond a statement by Jeff Sessions that they were part of a broader removal of “25 examples of improper or unnecessary guidance documents identified by our Regulatory Reform Task Force led by our Associate Attorney General Rachel Brand.”

The GOP in the House and Senate don’t care about disabled people, it seems, except when it can use them as pawns to do an end-run around women’s constitutionally-protected rights to bodily autonomy.

Let’s Break Briefly from Ohio House Bill 214 to talk about Ohio Governor John Kasich

I remember this guy from the Presidential debates. I remember thinking, “Okay, I could live with him as President. He gets that there needs to be a safety net and that it’s unfair to demonize people for needing it.”

I should have listened more closely to those people who’ve been saying, “Don’t be fooled; John Kasich is no moderate.” In 2016, Politico summarized his actions to limit abortion access in Ohio:

“Laws signed by Kasich prohibit almost all abortions after 20 weeks of pregnancy, mandate ultrasounds before a woman can get an abortion and require abortion clinics to establish formal written agreements with local hospitals about emergency care — a provision that has been repeatedly modified to be even more restrictive and make it harder for clinics to comply. “

It’s too bad, because Kasich reminded me (or he used to) that not all of the GOP are from that school of Paul Ryan and Mitch McConnell and their cronies (I’d say Trump, but I figure that Trump only identifies as GOP because he can go the furthest with them; he’s not a Conservative) that don’t seem to have much use for marginalized groups or much interest in helping them.  I know that there are Republicans, because I talk to them, who are quite socially aware: they’ve done their research on social issues, they speak with insight, and while I may not always agree with them on all things, the conversations are always thought-provoking.

I wish more of them would run for office, damn it.  Because it’s becoming difficult – so difficult – not to become totally disillusioned with the current crop of GOP in the House and Senate, watching them throw my friends in the US under the bus again, and again, and again.

(Not that there are Democrats that are doing it too – as I wrote earlier, I’ve been disturbed, and upset on female American friends’ behalf, by some of the Democrat rhetoric around sexual harassment in particular recently. Its hypocrisy seems to have increased in the last little while, and I think it’s important to call that out, because I like to be fair.)

But that, at this point, is not affecting legislation. The tax bill and the repeal of the individual mandate affects especially my disabled friends that are, for a variety of reasons:

  • Most affected by cuts to Medicaid
  • Unlikely to benefit from the tax cut.

Cuts to Medicaid mean that disabled people lose services that they depend on; some will no longer be able to live independently; some will die. This is the way it happened in Britain  with the austerity cuts – the government thought that it could save money by making cuts to supports and services to disabled people and to the National Health Service, and people died – in excess of  120000 deaths were estimated to be linked to austerity cuts, as of November 2017.

But back to Ohio House Bill 214…

America, Meet Me at Camera Three

Ohio’s House Bill 214 is not an indicator that the GOP cares about people with Down Syndrome; it’s a blatant attempt by the GOP to emotionally manipulate the public into supporting an (albeit limited) ban on abortion – after all, who could object to measures designed to stop the abortion of disabled children?

I object, as I said earlier.

Ohio House Bill 214 is  totally typical of a government more committed  to fetuses than it is to making sure that American families have what they need to raise children, and I won’t feel like the monster that Ohio lawmakers want me to because I can’t support it. Using a fetal diagnosis of Down Syndrome as a way to further an anti-abortion agenda is pretty objectionable – a similar law was found to be unconstitutional in Indiana, and another in Louisiana is being blocked by the court –  so he hasn’t got much moral ground to stand on here. Dr. Leesha Thrower, whose daughter has Down Syndrome, said it better than I can:

“These politicians do not care about my six-year-old daughter. If they did, they would be using their valuable time to make sure that every child born with Down syndrome has what they need to live a healthy, full life…I want my leaders to have my back, and my child’s back, instead of using her as a pawn in a political effort that is only going to harm women and make it harder for them to make the right decision for them and their families.”

Well said, Doctor. Well said.
Happy New Year, folks. Let’s make 2018 a good one.

.

 

 

Ableism in Britain’s NHS – Ian Shaw Put in Palliative Care with a Treatable Cancer

Ian Shaw, a 35-year-old disabled British male, is recovering nicely from testicular cancer. He’s fortunate; if Dr. Justin Wilson hadn’t stepped into his case, ableism within Britain’s National Health System might have prevented Shaw from getting chemotherapy.

"Ableism" written in white block letters on a brick wall. Keyword: Ian Shaw

Image Description: “Ableism” written in white block letters on a brick wall.

Content Note: Ableism, cancer, child death, euthanasia, medical model of disability, organ donation, parent killing child with disability

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Ian Shaw is autistic, intellectually disabled, and doesn’t communicate using words. He has epilepsy. He’s spent most of the last decade in secure units because he has behaviours that are difficult to manage, but his parents fought to get him moved into a community residential setting, and eventually got him a placement.

A few months after moving, he was diagnosed with advanced testicular cancer. Shaw’s family blame the staff at his previous placement that the cancer was not detected sooner – he’d apparently had a testicular swelling treated the year before, but no follow-up had been done.

Ian Shaw received his cancer diagnosis in December 2016. By February 2017, the tumor had grown so large that it was affecting Shaw’s spine, making him unable to walk. Doctors at Luton and Dunstable hospital said that, given the rapid downturn in his condition, they wouldn’t be able to start the planned chemotherapy treatments, and declared his condition terminal. Shaw went to live with his family and receive palliative care in their home.

Enter Dr. Wilson, a psychiatrist who has studied cancer treatment in intellectually disabled people.

Ableism in Ian Shaw’s Treatment

Knowing that testicular cancer is very treatable with a high rate of success, the story puzzled  Wilson.  Statistics support his position:

“For men with cancer that has spread to the lymph nodes in the back of the abdomen, called the retroperitoneal lymph nodes, the survival rate is about 96%. But, this depends on the size of the lymph nodes with cancer. For men with cancer that has spread outside the testicles to areas beyond the retroperitoneal lymph nodes, the survival rate is 73%. About 11% of testicular cancer is diagnosed at this stage.”

Given that Ian Shaw’s tumor was affecting his spine, even if we assume that the survival rate was even 60%, why the assumption that there was no point in trying a course of chemotherapy for a cancer that statistics show does respond readily to it?

Dr. Wilson’s theory was that there was some ableism involved, as he told the BBC:

“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,”

He was also concerned that the challenges of administering chemotherapy to someone with Ian Shaw’s behavioural challenges were making the hospital reluctant to offer treatment. He requested to be put in touch in with the family, who got a second opinion about treatment for Shaw after talking with him.

The University Hospital Trust for Luton and Dunstable Hospital said that Ian Shaw’s disabilities weren’t a factor in the decision to put him on palliative care, but the proof seems to be in the pudding on this one:

  • Shaw is receiving chemotherapy at the Royal Marsden Hospital – he is put under anesthetic while it happens. Not a perfect solution, but it allows it to happen
  • The tumor is shrinking  – Shaw now uses a wheelchair
  • A young man who had been told he was going to die within months has hope

If Ian Shaw was indeed refused treatment initially because of his disabilities, it was because of this medical model of disabilities that tries to tell us that “quality of life”,”quality of contribution to family/community/country”, and “quality of relationships” need to fall within narrowly-defined, highly subjective parameters in order to be “valid”. It’s a way of looking at people, community, relationships, and the world that it seems like we should have grown out of by now, quite frankly.

The Importance of Confronting Ableism

It’s not just Britain. We know that disability affects whether or not someone gets an organ donated to them in America, and whether people are granted permanent residency in Canada. We know that it was also in Britain where the courts gave a hospital permission to kill Nancy Fitzmaurice, who didn’t have a terminal illness and who was breathing on her own with no life support; she was twelve years old.

Any person could become disabled at any time. It’s important for all disabled people to know that these ableist attitudes exist within our systems, so that they can be prepared to fight them if they have to, especially  when they’re dealing with agents of systems (medical system, legal system, judicial system, etc.)

Ableism kills. We must never become complacent.

Read More about Ian Shaw’s Story

Ryerson Student Learning Centre has Serious Accessibility Issues

So for those who don’t know, the Ontario government’s mandate on accessibility is that the province must be fully accessible by the year 2025. Movement toward this goal has included a legal requirement that newly-constructed public buildings be fully accessible. Ryerson University in Toronto apparently didn’t get the message when it built the Ryerson Student Learning Centre.

Content Note: Ableism, Accessibility Issues 

A young man in a wheelchair can't get up concrete stairs. Stock photo; not the Ryerson Student Learning Centre.

Image Decription: A young man in a wheelchair can’t get up concrete stairs. Stock photo; not the Ryerson Student Learning Centre.

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David Lepofsky, lawyer and accessibility advocate, is blind. He took Carol Liebermann of Global News on a walk around the Ryerson Student Learning Centre, built in 2015, to show her, from an accessibility standpoint, how there’s “one design flaw after another.”

Here’s a summary, from another video, that Lepofsky did for the Accessibility for Ontarians with Disabilities Act (AODA) Alliance, of some of the major problems with the Ryerson Student Learning Centre:

  • Angled staircases at several key areas in the building. For blind and low-vision students, these guide feet one way for a short distance, then abruptly change the direction, creating a tripping hazard.
  • Hangout steps that encourage people to put their legs and belongings in the line of traffic, and that aren’t accessible to students who use mobility aids.
  • An information desk and computer information kiosk that both lack basic accessibility features.
  • Several problems with the main entrance: angled stairs that follow a confusing route, a ramp that follows a confusing route (with hangout steps), an elevator that’s not plainly visible and that many people won’t think they can use due to confusing signage, and angled pillars in the path of travel.
  • Significant problems with signage, particularly for students who read Braille.

There are other problems as well – enough that Lepofsky’s  information video is 30 minutes long.

Ryerson responded to Lepofsky’s criticisms:

“The Student Learning Centre meets the requirement of the current applicable Ontario Building Code and meets the best practices of Ryerson’s Accessibility standards, to ensure that the building is inclusive to all abilities. In the spirit of inclusivity, on-going improvements are being integrated into the programming and physical operations of the building.”

Here’s the problem with that.

One More Time – Universal Access Benefits Everyone…

You don’t have to have lived as a disabled person in Ontario for very long to know that a building can be fully accessible under the Ontario Building Code and still have accessibility barriers. The Building Code simply isn’t comprehensive enough. It’s an issue, all  disabled in Ontario know this, and we need to keep at the Ontario Government about it – because it’s not okay that the Building Code is okay with a blind man getting whacked in the head as he walks because a slanted pillar is architecturally edgy.

And we all know that Ryerson isn’t going to say in its official statement that perhaps, in light of Lepofsky’s criticisms, that the best practices of its Accessibility Standards need to be revisited to see if they do indeed meet the needs of all students.  But let’s hope that Ryerson does revisit those standards –  as a university that offers a prestigious disability studies program, it should recognize that disabled people are the experts about their own experience. It should also recognize that some of the barriers present in the Ryerson Student Learning Centre arose from fundamental errors in thinking about accessibility. If they were best practices, Ryerson should really be embarrassed:

  • Braille signage often doesn’t give the same information as printed signage
  • The information desk in the lobby has no wheelchair height and no knee space for wheelchair users. The sign that’s put up when the desk isn’t manned invites people to ask people in yellow shirts their questions (no good for blind or low-vision people) or go to a certain room, to which no directions are given.
  • The computer at the information kiosk  has a touchscreen, which is inaccessible to people with several types of disabilities.
  •  Signage problems make the external elevator difficult to find and confusing to use.

Those aren’t best practices. Those are significant issues, ones that walk throughs with disabled people could have identified and that could have been easily changed before the building was even opened.

The Ryerson Student Learning Centre is Supposed to Be for All Students

Now, I know that there are people rolling their eyes and thinking that I’m being too picky, and that David Lepofsky and I should be thankful that Ryerson tried. But the way I see it, if David Lepofsky decided tomorrow to become a Ryerson student, he’d be paying exactly the same tuition and student fees that non-disabled students do, only the brand-new building whose facilities for both learning and recreation are supposed to fully  and easily available to him as a student are only available with the stress and anxiety involved with dealing with poor design, bad signage, reliance on others to ensure safe navigation.

That’s ableism, folks.

As is the expectation that disabled folks should just shut up and be grateful for every crumb of access that we’re given, especially in buildings that are built with public money.  So give me a break with the whole, “Why can’t you just be happy?”

Accolades vs Access

The design for the Ryerson Student Learning Centre won several architecture awards, which says a lot about where Ontario is in its thinking about accessibility at the moment.

2025 really isn’t that far away. Care to place your bet on whether we’ll actually have a fully accessible Ontario by then?

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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Manatee County “Interpreter” Signs Nonsense ASL at Hurricane Irma Press Conference

I’m surprised that it took me until early this week to hear about this story, because it does appear that it was covered by several media outlets. But here we are. I only heard on the September 19th edition of The Daily Show that Manatee County in Florida fucked up with its ASL interpretation during a televised press conference designed to get evacuation information out to citizens just before Hurricane Irma hit.

Content Note: Ableism, Weather Emergency, Emergency Planning, Privilege, Classism, Disrespect, PWD as an afterthought

Young white woman wearing a orange shirt holds her hands in front of her, just above chest level, palms facing her with her thumbs up and fingertips almost touching. Her nail polish is orange, and her hair is strawberry blonde. She is smiling. Keyword: Manatee County

Image Description: Young white woman wearing a orange shirt holds her hands in front of her, just above chest level, palms facing her with her thumbs up and fingertips almost touching. Her nail polish is orange, and her hair is strawberry blonde. She is smiling.

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Seriously, Florida?

It’s this sort of thing that makes disabled people one of the most vulnerable groups in America when it comes to weather emergencies, as I’ve written about before.

The issue isn’t that Manatee County didn’t think about providing ASL interpretation, as you can see in this video. The person who uploaded this video captioned it with what the interpreter is signing, and I think it’s clear what the main issue is.

But for those who don’t want to/can’t watch the video…the issues are:

This is unacceptable and infuriating, for a few reasons.

To Start…

Certified interpreters were available. Florida Governor Rick Scott used interpreter Sam Harris:

Sarasota County also used a qualified interpreter at its news conferences.

VisCom, a company that has provided Manatee County with interpreters in the past, wasn’t called about providing services for Hurricane Irma communications. Charlene McCarthy, the founder of VisCom, had offered to send in an interpreter for a September 9 press conference in Manatee County, but her offer was declined; no interpreter was used for that press conference.

For some reason, Manatee County decided not to use an interpreter. It’s not as if no one was anticipating the need for a press conference; the media started talking about Irma and where she would at least potentially hit just after Hurricane Harvey landed.

Meet Me At Camera Three, Manatee County Administration

All this brings one word to mind: afterthought. Deaf and hard-of-hearing people were an afterthought as you prepared to get potentially life-and-death information to your residents about a weather emergency. Think about what it must feel like to know you’re an afterthought.

It’s this half-ass attitude toward accessibility that continues to give disabled people the impression that their communities of residence don’t value their money, skills, desire to give back to their communities, or (in this case) even their lives. Go ahead and deny that this was the message you meant to send, Manatee County – it’s the message that you *did* send, with your failure to take simple steps to ensure that Deaf and hard-of-hearing people in your communities got the same access to the life-and-death press conference information that hearing people did.

You owe your Deaf and hard-of-hearing communities an apology, and a promise that this won’t happen again.

And for Those of You Who’d Tell Me…

You know who you are, you keyboard warriors.

Yes, you. The ones making comments like these on the internet coverage:

  • Deaf people activate CLOSED CAPTIONING on their tv sets. I guess numbnuts in government and around the country are unaware of that secretive tidbit of information. They also get text messages, emails, instant messages and communications from each other/family and read local news. They can translate audio to text. It’s not like a reeetarded interpreter is their only source in the year 2017. Duhhh
  • “I think what is shocking is that in 2017, taxpayers have to pay for that nonsense. they practically give away voice to text software, and there are plenty of free apps that would instantaneously give the devil a much more complete picture of what the officials are saying…Shameful waste of money.”
  • “Considering the few people who require this, it was a waste of time anyhow”
  • “Reminds me of the fake sign language interpreter at Nelson Mandela’s Memorial, standing right next to Barry O and flailing about – that was quality comedy!”

Listen, folks. There are whole bunch of reasons why these comments are disgusting, but I don’t even need to get into them, because they’re all invalid for one, simple, legal reason:

Title II of the ADA dictates that “state and local governments must ensure that their communications, including emergency communications, are fully accessible to people with disabilities.” 

Accessibility is the law, and it’s been that way in America for 27 years. End of story.

But the fact that people felt comfortable letting fly with that sort  of ableist (not to mention classist, in some cases) shit  in the comments section of a story about how Manatee County’s lack of preparation meant that a group of disabled people didn’t get emergency information about a Category 5 hurricane….well, it made me feel ill. I wanted to draw some attention to it.

That sort of willful ignorance about the challenges that disabled face from the people in their  communities – well, it’s beyond disappointing.  It’s gross, really.

Seriously, America. Grow up.

Canada continues to send its thoughts and prayers for those affected by the recent hurricanes…

Interesting article on captioning vs ASL

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My Brain AVM: Disability and Prayers

This week I’ve received a lovely gift: a prayer shawl from the church I attended when I was a child. It got me thinking about disability and prayers.

Content Note: Religion, “I’ll Pray for You”, Ableism, Accessibility, Politics, Social Attitudes toward Disability, Christianity, Mental Health, Parent Death

Close-up on a woman's hands and wrists, wearing a bracelet, holding an older man's hand (wearing a wrist watch.) Speech bubble from the left of the picture says, "I'll pray for you." Speech bubble from the right says, "...Sorry?" Keyword: disability and prayers

Image Description: Close-up on a woman’s hands and wrists, wearing a bracelet, holding an older man’s hand (wearing a wrist watch.) Speech bubble from the left of the picture says, “I’ll pray for you.” Speech bubble from the right says, “…Sorry?”

The shawls are a ministry of my childhood church. A group knits shawls for those in the congregation that need healing, the shawls are blessed and prayed over, and given away. My father received one several years ago when he was in the hospital a few years back. but the ministry hadn’t yet started when I was in the hospital after surgery for my brain AVM and stroke recovery. A dear friend asked last week if I’d ever gotten one, and I said, “No,” and one showed up at my door with this note:

This shawl was knitted by {name omitted} and blessed with prayers for your healing ~ Body, Mind and Spirit

***

The appearance of this gift was timely, because in a Facebook group to which I belong, made up mainly of disability advocates but also of people just generally interested in disability issues, disability and prayers also came up. a thread got a bit derailed the other night when a presumably well-meaning individual offered to pray for us all.

“No prayers, please,” responded one person.

Group member Belinda Downes, who educates people about facial differences,  asked the group moderator if she could explain why the offer would be problematic to many people in the group, and then went on to do so. I quote Belinda here, with her kind permission:

“Thanks for the offer to pray. I’m a Christian too…so may I respectfully explain why offering to pray ‘for us’ is not helpful? If this is not appropriate…please let me know.

1) I understand as a Christian that we are taught to pray at all times about all things, and to have compassion for others. It’s not so much the prayer that is the problem but the ‘compassion’.

2) Speaking for myself, when strangers who don’t know me offer to pray for my scarred face, I know they are praying for the wrong thing. The people offering to pray for me try to imagine what it what be like to be me, and their guess is always a very sad story about loss and loneliness, but personally I’m very happy and have many great long friendships.

3) Because of point two, when people offer to pray for me, I don’t hear kindness, I hear inappropriate judgement. I hear that people think my life is sad and wrong just because of the way I look. And because of that I have the same reaction that {name omitted} has.

4) My advice would be to pray for what you know about, not what you think you know. And God will lead you to really know that He wants you to know about. God Bless.”

I don’t feel like I can comment specifically on everything that Belinda has said, because I’m not a Christian anymore. I’m a happy agnostic –  I figure that there’s something out there bigger than me, and (most days) I don’t feel any real need to pin it down beyond that, for me or for anyone else. I’m happy to let people define it for themselves, as long as they’re not hurting others in the process.

But I do have thoughts on disability and prayers. Let’s talk a little bit about that, and then I’ll tell you about what in Belinda’s post I *can* comment on.

Disability and Prayers: Some Boring Background About Losing My Religion

I was Christian when I was growing up. I was a devout Christian all through my teen years, in fact. My family was Anglican, but my faith had more evangelical leanings – I’d prayed the salvation prayer, and I believed it, even if as a result my faith life mostly vacillated between feeling like I wasn’t a good enough Christian or scared of what would happen if I wasn’t a good enough Christian.

I noticed in my last year of high school that sometimes I didn’t feel like I could “buy into” what my faith was telling me anymore. I simply found it hard to believe that people around me who were doing amazing things to help other people were going to hell just because they weren’t Christian. I wondered why God would judge my gay friends so harshly, and expect me to as well. I didn’t know that I was taking my first little steps away from Christianity.

Sometimes, when I talk about to Christians now, they say, “Did you think about it this way, though? Like – ” and I stop them right there, because I didn’t decide to leave Christianity on a whim. It was a journey. There was a lot of discussion with a lot of people (Christians and non-Christians, of all ages and in all stages of their faith), a lot of crying, a lot of anger expressed that I didn’t even know that I had in me, and a lot of thinking about ideas that I didn’t even understand at the time. My mother said, “Try not to think about it too much.” I wanted to say to her, “How can I not think about it?” In some moments I was very sad, in others I was terrified, in others I was exhilarated…because in leaving one world, a new one was opening up to me, and it was full of possibilities.

Getting through all of that, to a place where I can comfortably, with peace, say, “I’m not a Christian anymore, but if you are, great. Tell me about it!” took about six years, and I did alongside  defining events of my adult life to date.

Losing my grip on my mental health, when I thought that struggle was over.

Losing my mother, when I thought I’d have her for decades longer.

Losing my ability to move my body to move my body the way I wanted, a possibility that I’d never considered. My brain AVM and stroke changed all that.

Losing the life that I’d planned for myself, fighting to gain any bit of it back that I could, with every bit of will that I could muster, and then learning to let it go and build a new life.

So my convictions on my spirituality have been tried and tested, and I’m quite happy and at peace with where I am (and hope the same is true for you, because it’s a nice feeling.)

Disability and Prayers: My Position

I’m afraid that I’m going to sound contradictory. But…

Despite the fact that I’m not a Christian anymore and that I haven’t been to my childhood church more than five times in the last twenty years, I love the prayer shawl that I received this week. I love the idea of something warm to wrap around me, imbued with the loving intentions and focus of others who know me and my family, even if they don’t see me around church anymore. I live in a small town; these people still see me.  Most of them saw me grow up, so they know that there were rough times long before the brain AVM and stroke, and they see that I’ve built a life for myself as a disabled person since the stroke.

I know that lots of people in my community were praying for me when I was in surgery, and afterward, when we weren’t sure what would happen, and as I was recovering, and I’ll always be grateful. And I still welcome the prayers for healing of mind, body and spirit from the people who made my shawl  because I know that I can use this loving focus of intention. After all, there are times when, for a variety of reasons, totally unrelated to my disability, my body, mind and spirit do feel wounded and raw and in need of healing.

I still miss my mother, twenty years after her death.

I’ve often feel helpless and sad for friends and family that are facing far too much grief and uncertainty.

My body isn’t as quick to recover when it’s injured. Pain in my knee and foot set my back significantly this summer.

I wonder what’s ahead for me and if I’m making the right choices for my life.

It’s nice to know that people are thinking of me and that they care, and I will think of that when I wear my prayer shawl on cold nights.

However, in general I feel the same was as Belinda about disability and prayers. When strangers or people who don’t know me well say they’ll pray for me, I feel like there’s an assumption that my weak leg and a weak arm must make my life difficult and unhappy. There are some things about my life that I’d change, but I manage quite well with my disabilities and I don’t give them a whole lot of thought – but, as I’ve written about before, I’m lucky enough to have landed in circumstances that mitigate the effects of constant, debilitating systemic ableism.

I can’t stop you from praying that my physical disabilities be healed, but it’s not what I need. Or even want, really.

Disability and Prayers: If You Want to Pray…

If I could have anything…I’d want a serious commitment from government at all levels (and the funding and resources to back it) that *all* Canadians have what they need to live safe and healthy lives in their community of choice, where they can contribute their talents and feel like their presence is valued and appreciated.

As far as that concerns disabled people, the federal government  is taking some steps with their efforts to create disability legislation similar to the US Americans with Disabilities Act.

But lawyer and  disability activist David Lepofsky declared back in 2015 that Ontario was unlikely to reach its goal of total accessibility by 2025 – bad news, because an accessible Ontario is good for everyone, not just disabled Ontarians.

I’d really like disability-friendly governments.

I need…

I need good snow removal on the sidewalks in town and on steps and ramps so that I don’t fall and hurt myself. I don’t need electric doors to work – I can manage – but, damn it, it’s nice, because I’ve got one arm/hand to work with and sometimes I’m carrying stuff in my hand and have bags on my arm and my cane hooked over my elbow…and other disabled people really do need them. I need people to take me seriously when I say, “This is an access issue.”

I need open minds and open hearts and people to keep talking and not making assumptions about me and my disabled friends – assumptions about what we can and can’t do, about what *you* can and can’t do (and about what you should and shouldn’t do), about what’s legal and illegal. We need people to talk *to* us, not around us or about us – especially when the talk is about things that will impact our lives.

My life’s practically an open book anyway since my brain AVM and stroke, but if I don’t want to answer, I’ll just say so. I’d rather you ask. Just keep it respectful. Respect and dignity. We all deserve that.

Disability and Prayers: Bottom Line

There’s a bit of a list of things I’d love you to pray for, if you want to pray for me:  Friendly governments, accessible spaces, open hearts and minds, respect and dignity. But if you’re still not sure – ask, don’t assume. Even on the days when I look like I’m miserable (and I know that I have them), it’s probably got very little to do with my weak side.

This one rambled a bit. Sorry. Thanks for reading.

Visit Belinda Downes’ Facebook Page – Coffee with Belinda Downes

 

 

 

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SunRise B&B Refuses Service to Visually Impaired Man Because of his Service Dog

My dad let me know about a story I missed last week, about a Toronto couple being turned away from a bed and breakfast in Prince Edward County, Ontario because of the service dog traveling with them. The owners of the Sunrise B&B in Bloomfield, Ontario are, according to CBC.ca, “upset about what happened,” but stand by their decision to insist that Jill Greenwood, her husband David (who is visually impaired), and his guide dog Romy, find alternate accommodation.

I have thoughts.

Content Note: Ableism, human rights violation, expectation of accommodation

Golden labrador guide dog lies on the grass, alert with head up. Dog's black harness is visible. Just off to the side, we see the ower's legs in blue jeans, and their white cane. Keyword: SunRise B&B

Image Description: Golden labrador guide dog lies on the grass, alert with head up. Dog’s black harness is visible. Just off to the side, we see the ower’s legs in blue jeans, and their white cane.

***

Legally Speaking

John and Joan Stenning, the proprietors of the Sunrise B&B, say that the Greenwoods didn’t tell them them that they’d be coming with a service dog. They say that had they been told, they would have informed the Greenwoods that their “no pets” policy includes service animals.

That set off alarm bells in my head (as I’m sure it does for many readers) because most businesses know better than to try and bar a service animal.  However, in Ontario, a number of factors have collided to make the bed and breakfast industry a strange little pocket of the hospitality industry where lawyers can apparently argue that the Stennings didn’t break the law by denying service on the basis of a service animal:

However, the Accessibility Directorate of Ontario did confirm that denying service to some because of their service animal violates the Ontario Bill of Rights, so I can’t see how how the Stennings or their lawyer can argue that they’re in the right.

Let’s unpack this a little more.

Public vs Private Space

I don’t know what the law has to say the status of your house as private space once you decide to rent rooms in it. But it seems to me that once you decide to open a business that lets the public into your life like that, you give up some of the right that you have to pull the “private space” card. I presume that no one held the Stennings at  gunpoint and demanded that they open a B&B. Anyone going into that business has to know that while they definitely have the right to set boundaries (within reason) about what guests can do, they also can no longer do exactly as they want in their home, all the time.

They may have to change behaviour to reflect that other people are in the house (keeping music and TV volume low, shorter showers, ensuring public gathering areas are always tidy.)

They may have to meet safety standards that they didn’t before.

Human rights standards need to be met. The Greenwoods aren’t interested in taking this to court, but maybe the next people with service dogs will be. The Stennings were just a step from violating the law under the AODA, and, if I understand the pending legislation correctly, would be in the wrong were it currently law:

(2)  No person, directly or indirectly, alone or with another, by himself, herself or itself or by the interposition of another, shall,

  (a)  deny to any person occupancy of any self-contained dwelling unit; or

  (b)  discriminate against any person with respect to any term or condition of occupancy of any self-contained dwelling unit,

for the reason that he or she is a person with a disability who is keeping or is customarily accompanied by a service dog, or who requires the accompaniment of a support person or the use of an assistive device to assist them with their service dog.

(Lawyers can feel free to tell me how I’m wrong, because the Stennings’ lawyer thinks I am…and Lord knows I’m no lawyer…)

And let’s not forget, they apparently violated the Ontario Human Rights Code.

If you don’t want to keep your home space private and not have business law affect it, don’t choose to run a business in your home.

And even if they weren’t in the wrong, or their behaviour had little chance in the near future of putting them in the wrong if repeated…what has refusing the Greenwoods service at the SunRise B&B got them? A bunch of negative publicity all over the internet – at least four different news articles, not including my blog post, plus the bad reviews on Facebook and the B&B listing sites.

I wonder if it was worth it.

Best for the Stennings and all other B&B owners who’d prefer to discriminate against those that use service animals to start thinking about how they’re going to deal with this issue, because mark my words…it won’t quietly go away.

Business Needs to be Business at the SunRise B&B

And if the Stennings and other B&B proprietors don’t like that idea…well, it’s really too bad.

People who rely on service animals aren’t doing so to be difficult. They have the animals because they’re disabled and the service animal helps them to function in society. Guide dogs in particular (like Romy) are expensive, highly trained, and they have papers to show they’ve been trained.

Denying someone service because of their guide dog is as bad as denying service (in an accessible building) to someone who uses a wheelchair, over concerns about the dirt that the chair will track in or that other guests will be disturbed by the sound of the elevator or find the electronic doors to be too slow to open and close, etc.

I admit that I don’t know what it takes to clean up a B&B thoroughly after a service animal has stayed there for a night or two.  But obviously other B&Bs manage it , because there are plenty of them in the US, and its Americans with Disabilities Act *does* require many B&Bs (there are exceptions, based on number of rooms to rent and whether the proprietor lives on premises) to accommodate people with service animals.    If a proprietor can’t manage whatever cleaning needs to be done, or can’t afford to hire help or someone to do it for them, then instead of painting disabled people and their service animals as a burden they shouldn’t be expected to shoulder, perhaps they shouldn’t be in the B&B business.

No other business owners in Ontario gets to pick and choose which pieces of accessibility legislation they feel like following – they have to accommodate disabled people. If added cost is involved, it’s a cost of doing business in Ontario.

Expectation of Accommodation

David Greenwood says he can’t remember whether he told the Stennings that he’d be traveling with Romy. Over and over again in the comments sections on media accounts of this story, I saw people saying that he should have made sure the the Stennings knew, in part because the “No Pet” policy for the SunRise B&B was posted on their website. To them I say:

And, as Kim Sauder said over at her blog, “Crippled Scholar”:

“It’s bad enough that systems aren’t in place to accommodate disabled people without advance warning (thus giving people an excuse to fall back on when a space isn’t accessible) but to suggest that we should have to announce our presence in situations we weren’t even expecting to require accommodations is absurd.”

Perhaps (and I realize I’m only speculating) that’s why David Greenwood can’t remember whether he mentioned he had a service animal when he made a reservation at the Sunrise B&B: it’s relatively difficult in 2017 to find a business that won’t accommodate a guide dog like Romy, that provides support because of a documented disability and has all the papers to prove it.

Perhaps he wasn’t thinking that much about it because he assumed that the Stennings, like most business owners in Ontario, know that you can’t deny service based on use of a service animal, and didn’t expect to have to identify himself in advance as disabled in order to receive accommodation.  After all, it’s also just a bad business decision to get embroiled in this sort of thing. When business owners try to bar people on the basis of needing a service animal – surprise! – it often makes the news.

As blatant ableism sometimes does.

Bottom Line

This was an unfortunate situation all around. Here are the takeaways as I see them:

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BC Town Will “Explore” Improving “Q to Q Ferry” Accessibility…Maybe

I already put a link up on the Girl With The Cane Facebook page to mssinenomine’s blog post about the City of New Westminster’s new “Q to Q Ferry” service, but I wanted to follow up with some comments of my own.

Content Warning: Ableism, Lack of Accessibility

Concept illustration showing a wheelchair in front of stairs, to represent something inaccessible Keyword: Q to Q Ferry
Lack of accessibility leaves people out.

Image Description: Concept illustration showing a wheelchair in front of stairs, to represent something inaccessible.

***

The City of New Westminster, British Columbia, is running a ferry service to connect two communities, Quayside and Queensborough, which are separated by the Fraser River. It’s a pilot project that runs until late September.

It isn’t accessible – there’s a step to get on the ferry.

Specifically, the website says:

“The ferry can carry up to four bikes per sailing on a first-come, first served basis. Although walkers, strollers and bicycles are permitted on the ferry, the use of wheelchairs and scooters is not supported.

As the ferry docks are located on the Fraser River, which is subject to a large tidal height difference, the access ramp can be steep at times and there is a step to get onto the ferry. Cyclists, passengers with strollers and those with mobility challenges should use their judgement about whether they are capable of using the ramp and ferry based on conditions at that time, should exercise caution and use the available handrails as necessary. If the demonstration service is extended into a longer trial or permanent service, the City would explore ways to improve the accessibility of the ferry terminals.”

This is why Canada need a federal Canadians with Disabilities Act, by the way. Because given that these attitudes about accessibility are out there, it’s going to take government legislation with some teeth in it to make accessibility a reality, and not all the provinces aren’t going to make those laws by themselves – currently only Nova Scotia, Manitoba, Ontario and Quebec have disability legislation on the books. British Columbia is working on legislation.

An Act is in the works under the Trudeau government. But today I’m concerned with attitudes.

Lack of Accessibility is Bad Optics

I wrote this post on accessibility several years ago, about how if buildings aren’t accessible, if wheelchair ramps aren’t kept clear in the winter, if electric doors don’t work, if there’s even just “a little step” to get into a place, you send a powerful message to disabled community residents (and disabled visitors to your community, and their families, friends, caregivers, and anyone who’s ever been affected by poor access and who notices when it’s available/not available):

  • When you don’t maintain the features that make your business accessible (keep ramps clear, maintain electric doors, etc.), you say to disabled customers, “You’re disposable – we don’t care if you can’t get into our business and on that basis decide to go somewhere else.”
  • When your business isn’t accessible, period, it says to potential disabled customers, “We don’t care that you’ve got money to spend here. We’d rather not have your business.”

Both leave me thinking, “Why is a wheelchair user’s money not as valuable as a non-disabled person’s money?”

The Q to Q Ferry’s “We’d Rather Not Have Your Business” Plan

The Q to Q Ferry seems an especially egregious accessibility offender because its website makes it sound as if the City of Westminster figured that whether or not it could make the ferry accessible shouldn’t have a bearing on the ferry’s sustainability as a long-term venture. The “we’ll get to it if it becomes an issue” attitude toward ferry accessibility is significantly flawed in that accessibility is already an issue (not for the City, apparently, but certainly for people who use wheelchairs and scooters) and it’s reasonable to ask why the City wouldn’t acknowledge an accessibility issue at the ferry’s planning stage; there’s nothing about disability in the RFP (provided to mssinenomine by Alice Cavanaugh) :

  • Did the City forgot disabled people as it planned the “Q to Q Ferry” project?
  • Did the City consider disabled people, but didn’t figure that they’d want to use the “Q to Q Ferry” service, and figured accessibility planning was unnecessary?
  • Did the Vity consider disabled people, but didn’t figure that accessibility was a big enough issue in general that the “Q to Q Ferry” plan needed to consider it?
  • Did the City figure it could save money by not addressing accessibility right away and just hoped that no one would bring up the issue? (My money is on this one)

Whatever the reason, the City of New Westminster has shot itself in the foot, because they don’t have everything they need to evaluate whether their pilot project is sustainable. It won’t know at the end of September whether disabled people would use the ferry even if they could (including people with mobility difficulties who don’t use a chair, but might have trouble on the ramp, per the website warning); it will have no idea what the revenue stream from that demographic could be. It won’t know what it will cost to operate an accessible ferry, and therefore whether it has been charging enough over the summer.  When you prevent a group of people from accessing a service, you run this risk, as mssinenomine also observed:

“Whatever information gathered from this trial will be flawed because the trial itself is flawed. The City of New Westminster will have no idea how well large the need for this service is, because it has, by design, excluded an entire segment of the population who may or may not want to use it.

Are these the best times? Intervals? How do bicyclists, people pushing strollers and wheelchair and scooter users interact with other pedestrians? Should boarding be prioritized? How effective is our wayfinding?”

And it didn’t count on bad publicity.

Disabled People Know How to Spread the Word

Bad publicity not just from me and from mssinenomine and the reach of our blogs, but from the CBC.ca article that says that the ferry isn’t accessible to wheelchairs and scooters, and disabled people in the City of New Westminster itself, the disabled visitors to that city…and every family member, friend, caregiver, service provider, and everyone with a vested interest in accessibility, because we get the word around about these things. It’s a very big community, and it recommends businesses and services on the basis of how accessible they are and says, “Don’t bother” about the ones that aren’t.

I do let businesses know when I’ve encountered an accessibility issue and give them a chance to address it before I move on. But if it’s something that’s easily fixed and it doesn’t get fixed, or if I get a bad reaction to bringing it up (like “If the demonstration service is extended into a longer trial or permanent service, the City would explore ways to improve the accessibility of the ferry terminals,”) I won’t go back. And I’ll tell people exactly why.

Why should I use the services (or recommend to other disabled people that they do the same) of a business that’s just willing to “explore” becoming accessible given a set of circumstances? Either my money is good enough for them or it’s not.

It’d be nice to get the Mayor of New Westminster’s input on this, wouldn’t it? mssinenomine talked to him on Twitter – check it out. And thank you to mssinenomine and to the Disability Visibility Project for bringing the story of the Q to Q Ferry Service to my attention.

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Trumpcare, Mental Health, and the Goldwater Rule

Back to politics today for  a moment…because there’s something I want to say, and because I’m struggling with something about Donald Trump and the Goldwater Rule.

Content Note: Ableism, Healthcare, Politics, Trump, Mental Health

Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background. Keyword: Goldwater Rule

Image Description: Senator Susan Collins, a white woman with short red hair wearing a dark blazer, white blouse, and pearls, stands in front of an American flag background.

Although I have Republican friends that I cherish in spite of our differences in opinion, regular readers know that as a group I’m hard on them. I’ve called them out, sometimes by  name (some have told me unfairly.) I don’t believe that I’ve been off-base.

But I also believe in giving credit where it’s due. So, to Senator Susan Collins of Maine and Senator Lisa Murkowski of Alaska, who’ve stood firm in this round of Obamacare repeal deliberations that what’s been included in the proposed repeal scenarios are not good for their constituents, despite bullying from Donald Trump, thank you. Thank you on behalf of my disabled American friends, and the children, families and elderly people of America that not only depend on Medicaid to keep them happy and healthy, but depend on it to keep them alive. Thank you for insisting that America be a country where everyone is taken care of. Your integrity and courage give me hope.

Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees. Keyword: Goldwater Rule

Image Description:  Senator Lisa Murkowski of Alaska, a white woman with short blonde hair wearing a red blazer, a write blouse, and a pendant on a chain, stands in front of some trees.

Thank you also to John McCain, a man with whom I’ve definitely had my disagreements, who came to Washington in spite of his cancer diagnosis, right after brain surgery, speaking eloquently about bipartisanship and the need to work together to craft a plan for healthcare, pushing himself through the week and into the early hours of the morning last Friday night to cast the vote that brought down Trumpcare. Sir, I salute you.

Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background Keyword: Goldwater Rule
MESA, AZ – June 4: Senator John McCain (R – AZ) appears at a town hall meeting on June 4, 2010 in Mesa, Arizona.

Image Description: Senator John McCain, a white male in his 70s with white hair wearing a navy blazer and blue dress shirt. stands against an American flag background.

I won’t ever forget what the three of you have done for my American friends.

And to the rest of GOP who are struggling with the idea of single-payer as an idea for health care in the US…on one level, I get it.

Didn’t think I’d say that, did you? Well, I’m nothing if not practical. Single-payer isn’t a perfect system. Not by a long shot. Are there wait times? There can be, for non-emergency issues especially. Is it bureaucracy-heavy? Not any more than the bureaucracy created by the American system having to deal with many insurance plans, I’d argue, but I could be wrong. But even though I waited a couple of months for the functional MRI that the AVM Clinic at Toronto Western Hospital needed to decide how to best treat my AVM, I didn’t have to worry about whether my family could afford to have one of the best neurosurgeons in North America specializing in AVM treatment rooting around in my head for 14 hours.

Take our system and make *your* single-payer system better. Show us up. In fact (if it’ll get you moving on this), I’ll bet that you can’t do it. Go ahead and prove me wrong.

Please! 🙂

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Now…why I’m struggling.

Donald Trump, Mental Health, and the Goldwater Rule

Last week, two friends who work in the mental health field, for whom I have a great deal of respect, said that despite their concerns about the Goldwater Rule, they firmly believe Donald Trump has a mental health condition and needs evaluation to determine whether he’s psychologically healthy enough to continue on as President. The American Psychoanalytic Association officially said recently that members shouldn’t feel restricted by the the Goldwater Rule when discussing Trump.

This is a tough one for me. I don’t like Trump at all, simply because I don’t tend to like people that are lying, arrogant bullies.  But I’ve fought hard against the idea that he’s unfit for office because he’s “crazy” because:

  • Even the most qualified mental health diagnostician would need time and access to Trump to make an accurate diagnosis
  • If the policy is that a clean bill of mental health is required to be the President, then Presidents as far back as Lincoln have been in violation
  • It’s ableist. There’s no reason that a President with a well-managed mental health condition should be treated any differently, in terms of perception of ability to govern, than a President with any other sort of well-managed condition.

And I think that ultimately I still believe that the Goldwater Rule should apply to the position of the President, provided that some other safeguards are put in place (because we do know that Presidents have had mental health conditions, and even degenerative brain conditions, that went largely unnoticed while they were in office):

  • Any President (not just Donald Trump) gets his or her mental health evaluated by an independent mental health practitioner on a regular basis. (I don’t know if this happens, or how often.) The Presidency is an extremely high-stress job, and it’s not unreasonable to periodically check at the very least whether that stress is having an adverse affect on the President’s well-being.
  • Concerns about the President’s mental health are treated like concerns about the President’s physical health – they are quickly, and thoroughly evaluated and, if necessary, treated. The President takes time off work if necessary, but the assumption is that he or she will be able to return to work, and that it will happen as soon as possible. The public is entitled to no more information than it would be if the President had a physical issue.

In other words: If the White House properly monitored the President for mental health conditions and ensured that if there were any conditions that were affecting the President so much that they interfered with his or her ability to govern that the President took time off (if necessary) and received the treatment and education needed to ensure that the condition was well-managed and no longer an issue…then I’d continue to stand on the Goldwater Rule and say, “It isn’t up to people who’ve never spoken to President to make a diagnosis. It’s up to the White House.”

But I don’t have that confidence in this White House. They can’t even make Donald Trump stop using his phone. They’re not going to convince him to let someone do even a simple mental health evaluation, or start treatment if that was deemed necessary – and Donald Trump is not a man that would step down. Not for the good of his health. Not even, I don’t think, for the good of his country.

So, I Struggle…

I’ve struggled as I’ve watched mental health diagnosticians openly break the Goldwater Rule since Trump’s election with their pronouncements in the media that he’s got any number of mental health conditions.

I struggle now, wondering if they were right to break the Goldwater Rule the way they did.

I don’t think that a mental health condition should automatically disqualify anyone from any job – I know too many people with well-managed mental health conditions that are in high-stress positions and that do an excellent job. But, like my friend said:

Whether someone agrees or disagrees with the content of his inflammatory statements, that is not the issue. This is not a matter of attributing mental illness because of disagreement with his views/statements. If you go back and view interviews with him from decades ago, he’s still the same big jerk, but his behavior has changed.”

It’s one thing to be a seventy-year-old civilian man with no insight into behaviour change and perhaps the need for help, and with apparently no one around you who will call you on that blind spot. It’s quite another thing when you’re the most powerful man in the world.

I think I know now where I land on this. If the White House won’t take action when there are indicators that the President needs treatment for a mental health condition, other people with experience and knowledge in the field of mental health need to be allowed to speak without fear of what it could cost them. It’s ableism to say, “People with a mental health condition can’t be President,” but it’s not ableism to expect Presidents that do have mental health conditions to work with their staff and medical team to manage those conditions so that their ability to govern isn’t affected.

To be clear:  Mental health professionals who are worried that Donald Trump isn’t competent to lead need the freedom to speak about it. Someone has to.

 

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