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

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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.

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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.

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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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Thoughts About the May 4th Vote to Repeal and Replace Obamacare

I watched far too much CNN last Thursday. But I couldn’t turn it off. I couldn’t believe that the vote to repeal and replace Obamacare was actually happening.

Content Note: Ableism, Healthcare, Politics

Headshot of Canadian Prime Minister Justin Trudeau (white male in his 40s with short, wave brown hair and blue eyes) looking thoughtfully into the camera. "Hey Girl, I'll Cover Your Preexisting Condition" is written across the picture in white block letters. Keyword: Obamacare

Image Description: Headshot of Canadian Prime Minister Justin Trudeau (white male in his 40s with short, wave brown hair and blue eyes) looking thoughtfully into the camera. “Hey Girl, I’ll Cover Your Preexisting Condition” is written across the picture in white block letters.

 ***

Watching from my privileged place here in Canada, where:

  • My mother spent six weeks in intensive care before she died of cancer
  • My father had surgery to fix the three breaks in his leg after being hit by a car and spent two months in a physical rehabilitation hospital
  • My twin niece and nephew were delivered by emergency C-section at 26 weeks and spent the next 3 months in the NICU
  • I had 2 brain surgeries to correct a congenital vascular malformation and spent 5 weeks in the hospital after the ensuing major stroke and nearly six months in inpatient stroke rehabilitation

…I reflect on how we only saw bills for ambulance service and records transfers…and think about where any of us might be if we lived in an America where Trumpcare was the law…and I am appalled.

Appalled

I’m appalled by the bill itself, although I’m fairly confident that despite making it through Congress, it’s dead in the water when it reaches the Senate. It barely got enough support from the GOP to squeak through the house. It *won’t* get the support from the Democrats that it needs in the Senate without major changes. Paul Ryan was so desperate to push this through that he didn’t wait for a ruling from the CBO about the cost of the bill and who it will affect (although we know that the CBO’s analysis of the first bill that Ryan failed to shove through Congress six weeks ago indicated that 24 000 000 people would ultimately lose their health care because of it.) Trump was twisting arms to get people to vote for it up until the morning of the 4th. Representative Chris Collins told CNN’s Wolf Blitzer that he didn’t even read the whole bill before voting “Yes” on it and he was not the only one.

Process-wise, this was a nightmare, and it will continue to be a nightmare for the GOP.

And for what? As Nancy Pelosi said on the floor of the House last Thursday, the people who voted for this will “glow in the dark”. The Democrats will make sure that everyone remembers who voted to repeal and replace Obamacare also voted take away health care for the Americans that need it most. Because I am furious on behalf of my disabled American friends, and scared for their future, here’s a list of who voted which way on the Trumpcare bill. Make the people who voted “Yes” glow in the dark for midterm elections in 2018.

What The Fight to Get Rid of Obamacare Is Really About

Obamacare sure as hell isn’t perfect. It needs to be fixed so that healthcare becomes and remains affordable and accessible for everyone. But it’s only in the minds of a group of Republicans who want to obliterate anything with Obama’s stamp on it that it needs to be repealed and totally replaced with something else, instead of tweaked so that the people who got healthcare coverage under Obamacare could keep it and so that coverage could become more affordable for those that are paying far too much for it right now. In their zeal to repeal and replace, with the bill they’ve presently voted on, they’ve thrown an alarmingly large group of Americans that includes the elderly, disabled people, people with cancer, people with mental conditions, people addicted to drugs, and women who have been sexually assaulted under the bus and pretty much said, “We don’t mind standing back and watching you die.”

According to the Kaiser Family Foundation’s list of pre-existing conditions that have universally been used to deny people insurance in the past, and that have raised premiums in the past, if I lived in US I’d be at risk of outright losing my insurance or a premium hike for factors that I can’t control, several times over. So would friends and loved ones, including my baby niece and nephew, who didn’t ask to be born three months premature.

Conclusion

I don’t believe that this bill will become law. But if it did, people who depend on getting health coverage through Obamacare would die. It is simply unfair that ability to obtain healthcare be tied to how much money you make. It’s more than unfair. It’s barbaric.

American friends, tell your representatives that when you call them — that the world is watching, we’re judging, and we’re using words like “barbaric”. Ask them if they can live with that.

Not sure what else to say about this right now. Just know that there are Canadians who are watching what’s going on and talking about it amongst ourselves, and that we will help however we can.

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Utilitarian Thinking and Ableism

Two profoundly ableist articles had the disability community buzzing last week. Because of their subject matter, scope, and implications, it feels like many more articles were released, but it really is only two.

Content Note: Discrimination, Infanticide, Rape, Rape Culture, Systemic Ableism

"Ableism" written in white block letters on a brick wall. Key word: Peter Singer

Image Description: “Ableism” in white, block letters across a brick wall.

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The first article discusses ethicist Athur Caplan’s argument for a blanket policy that organ transplants not be granted when people have “disabilities that impair you so that you cannot have any quality of life.” He used being in a “permanent vegetative state” as an example, but conceded later that people with Down Syndrome should be eligible for transplants because “they enjoy life,” and “they contribute to their families, and their families enjoy having them.”

Well, that’s very gracious of him.

What I do like about Arthur Caplan’s article is that, while he does take a stance on his position with which I’m uncomfortable, he also puts out a call for dialogue about where the line at which organ transplant should cease to be granted (and while disabled people aren’t mentioned specifically, he does recommend that disability groups and the “transplant community” be involved), and a fairly comprehensive list of talking points. I think that disabled people and their advocates have plenty of talking points to add, but I’m going to get to that.

I think that this was one of the most important talking points on his list, from a paper by SD Halpern and D Goldberg that recently appeared in the New England Journal of Medicine: “Some healthcare professionals contend that cognitive function should not be a basis for allocating organs because it allows healthcare providers to decide that some lives are more valuable than others.” We know from the organ transplant denial cases involving Amelia RiveraPaul Korby, and Lily Parra that this is already happening.

I want to move on to the next article and come back to this one.

Peter Singer, Disabled People and Rape

The other article that grabbed the disability community’s attention this week was about philosopher Peter Singer’s recent editorial in the New York Times about the Anna Stubblefield case. Anna Stubblefield was a professor at Rutgers University when she had sex with a disabled student, D.J., and was charged with rape. She was convicted in 2015.

Nathan Robinson’s “Current Affairs” article about Peter Singer’s editorial is very good and should be read in whole. It shows how Peter Singer actually argues that in the court proceedings for the Anna Stubblefield case, D.J. was treated in an unfair and ableist manner. Writer Astra Taylor interviewed a disabled woman who was in the courtroom during the trial and who absolutely agrees with Peter Singer.

Robinson’s article doesn’t explain, however, why Peter Singer then couldn’t leave well enough alone and suggest that if a person is intellectually disabled to the point where they don’t understand consent, they can’t withhold it, and therefore they’d presumably enjoy sex whether it was forcible or not. D.J. couldn’t speak, but even if they presumed an intellectual disability, Peter Singer posits, he must have liked the sex because he wasn’t struggling.

It reminds me of the 2014 case in Georgia where Judge Christopher McFadden overturned the “Guilty” conviction for a man that raped a woman with Down Syndrome three times in 12 hours because she didn’t “act enough like a victim.”

As Robinson says:

“The New York Times therefore just published a philosophical defense of raping disabled people, and Peter Singer has — somehow — reached a new low on disability issues. (Actually, to be precise, an argument that it’s not clear what the harm is in raping disabled people, along with the implication that non-consensual sex acts against physically and mentally incapacitated people aren’t actually rape anyway if the victims do not know what consent is.)”

Peter Singer’s argument is disgusting, but not unexpected. He has in the past:

  • Debated whether it might be moral to kill disabled babies, and decided that in some cases it might be immoral to let them live.
  • Said he couldn’t raise a child with Down Syndrome because it wouldn’t make him “happy” not to raise someone that would be his “equal”.
  • Suggested that the lives of intellectually disabled people are worth less than those of non-disabled people.

Peter Singer is a utilitarian philosopher. It’s important to note that, not just because of the reasons (outlined by Robinson in his article) that utilitarian thought just doesn’t work well when you use it to discuss people, but also because it makes so many damn assumptions.

And we all know how much I love those.

Utilitarian Thought and Assumptions

Let’s go back to Arthur Caplan’s article for a moment.

Because there aren’t nearly enough donated organs to meet the demand for them, the approach to how people get them has always been somewhat utilitarian, to make sure that they go to people who need them the most, who will get the most use out of them, and who will follow the post-transplant regimen properly. It’s unfortunate, but difficult decisions need to be made when allocating scarce resources.

However, there’s an assumption at the foundation of Arthur Caplan’s argument that intellectually disabled people are in a different class than non-disabled people. Not only should their suitability depend on the practical criteria outlined above, but also on a determination that it’s worth keeping them alive to begin with: Do they “enjoy life”? Do they “contribute to their families”? Do their families “enjoy having them?”

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

If you could go along with Arthur Caplan’s reasoning and (apparently) believe that those criteria are even remotely fair to propose, how would we measure how well they’re being met? What evidence of being “enjoying life” would a transplant team be willing to consider? Who does a person have to make “happy” to be considered? What barriers to potentially enjoying life (or to expressing that enjoyment?) should be taken into consideration? What does it mean, to “contribute to a family”? Does family have to be biological, or could it be friends? Should those two types of families be weighed differently, and how? What about people who, through no fault of their own, have seen little or nothing of their families and haven’t had the chance to make that many friends (like those that have been instititionalized for most of their lives)?

Is it right to assume that, in the absence of information from the person, that just because they can’t have what a non-disabled person considers a good quality of life, that they’re unhappy and wouldn’t want their life prolonged by an organ transplant?

Utilitarian thought claims to be logical, but it’s so rooted in ableist assumptions that it’s downright dangerous when it’s applied to disabled people.

Peter Singer assumes that there’s no harm when an intellectually disabled person who doesn’t understand consent and doesn’t struggle is raped. He can’t know that. He can’t read minds. He assumes that a low IQ = no inner life. As a bioethicist, he should know better. His assumption that everyone responds to rape by struggling is easily refuted. I hope that by now someone’s made him aware of just how ignorant he sounded.

I’m willing to believe that Arthur Caplan actually wants to do some good, even if he’s misguided, but I suspect that Peter Singer is really just an ableist fuck who tries to use ethics to justify his positions. And I’m sorry that the New York Times saw fit to print his tripe without a balancing article correcting his assumption about how rape could affect an intellectually disabled person, and that advised that lack of consent doesn’t imply consent. Don’t have sex with someone if you don’t have their consent, period.

Bottom Line

As icky as these articles are, I’m not all that shocked by them.

I wish I was.

It’s just not a shock anymore to that these attitudes like these are still out there. It’s disheartening, though, to always come up as the option that’s not as preferable in these utilitarian reasonings, especially when the ableism is so obvious and especially when it affects resource allocation and safety on even as a hypothetical.

True equality still seems a long way off.

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Rest in Peace, Anthony Corona

I’ve just heard about Anthony Corona’s death in December. I have thoughts.

When I was in school to become a Developmental Services Worker, which is the certification most preferred by the Ontario government for those who work in support positions with intellectually disabled people, the curriculum didn’t include Crisis Prevention Institute’s Non-Violent Crisis Invention certification that most agencies required in staff at the time.

Content Note: Ableism, Restraint, Abuse, Neglect, PWD Death

Small, lit, white candle held in someone’s cupped hands lights the darkness. Keyword: Anthony Corona

Image Description: Small, lit, white candle held in someone’s cupped hands lights the darkness.

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The school I attended didn’t believe in the NVCI certification; its philosophy was that workers should absorb any violence directed at them by the people they supported.

I argued with my teachers about this; I didn’t think it was fair to potentially many people, depending on the circumstance. I had a rock-solid belief, supported by the NCVI philosophy, that restraint should be a last-resort measure. But I also wanted to be sure that if I found myself in a situation where a person I was supporting was agitated and at risk of hurting self, others, or me, that I had the tools to effectively de-escalate the situation, and if a restraint (or hold, as NCVI calls it) was the tool that was necessary — well, that was regrettable, because the situation ideally should been escalated before it got to that point, but if the person was so out of control that a hold was necessary then the analysis of how we got there could wait, because the safety of everyone involved was at that point the primary consideration.

Safety.

Which is partly why I was so upset to hear that after being held in restraint on his bus ride home from school last December, 18-year-old autistic youth Anthony Corona died. I didn’t hear about this when it first happened, but it’s come up again recently because the coroner found he died from positional asphyxia — he’d had his head held between his knees for twelve minutes, blocking his airway and circulation, and he died soon after the people restraining him had discovered he’d stopped breathing.

There is no excuse for this.

Corona, who was also intellectually disabled, seemed from accounts to be out of control when he was restrained — he’d thrown a half-full bottle of water at an aide and physically attacked another student. At 5’10” and 190 lbs., he was a large young man, but could have been restrained easily using a two-person NVCI hold, removed from the bus without breaking the hold, and held and periodically repositioned by employees (who could have spelled off by other employees, if necessary) outside the bus until more assistance arrived. He, the employees doing the hold, and anyone else in the area would have been safe, provided that the hold was being done properly by trained individuals.

CPI does not sanction (nor does any other system of behaviour management of which I’ve ever heard) forcing an individual’s head between their knees and holding it there for even ten seconds, let alone twelve minutes. This restraint caused his death by positional asphyxia — and the determination that autism and was a contributing factor needs to be struck from the coroner’s report. Autism is not a lethal condition, and the suggestion that behaviours exhibited by Anthony Corona (ones that the coroner has apparently linked to his autism diagnosis) contributed to his death is ableist victim-blaming.

Shame on the coroner.

I wish that I could see the police report, because several things have struck me as I’ve read media accounts of Anthony Corona’s death and events leading up to it on which I’d like clarification.

Restraint on the Bus

Anthony Corona was “harnessed” into his seat (this account also mentions that he was harnessed) for the two-hour bus trip to and back from Bright Futures Academy each day. Also, school president Becca Colucci said that students are seated on the bus based on their behaviours. Another Bright Futures Academy student on the bus told a reporter from the Press-Enterprise that staff often didn’t secure Anthony in the harness and that he knew how to slip out of it. Becca Colucci corroborated this.

Restraint should always be the last resort. Was a harness and chain (whatever role it played) truly the least restrictive option for bus transport for Anthony, given that it restricted his movement for a total of four hours a day? Was it fair not to give him the choice of with whom he wanted to sit (or at least near?) This institutional approach to transportation practically guarantees behaviour issues in people prone to them, especially given that, as the student mentioned earlier also told the Press-Enterprise reporter, staff generally could be “quite rough” with Anthony and seemed reluctant to deal with him. This points to staff-related issues around Anthony that needed to be addressed, for everyone’s safety, before we even get into what happened on the bus, particularly around putting a safety plan in place for both school and bus.

Anthony Corona’s Safety Plan

Even though Anthony was secured in his seat, if he had a propensity toward behaviour that could put himself and/or other people risk, a safety plan for that contingency should have existed so that in an acting-out episode, all staff know details like what holds are and aren’t authorized, when the bus should be stopped, what the other students should do and who should initiate that, who at the school should be called, etc. — in short, making sure everyone knows their role, has the information they need to perform that role effectively, knows from whom they’re supposed to take instruction, and what the chain of communication is. If they can’t get on board with the safety plan, they need to work somewhere else, because these plans exist for a reason: to keep *everyone* safe until the person is under control again.

Apparently a safety plan did exist. We’ll come back to that.

T here were 21 students on the bus the day that Anthony Corona died, with only 2 aides and a driver (even though there can be up to 6 aides on a bus.) Even if Anthony Corona was the only one on the bus whose behaviour the school considered a particular risk (and given that Bright Futures Academy serves “special education students referred by local school districts due to significant behavior challenges”, that’s probably not the case) two aides in this setting isn’t enough. Things must have seem stretched enough that a student felt compelled to intervene when Corona became agitated, which is absolutely inappropriate, and why there should have been enough aides on the bus to both safely de-escalate acting-out behaviour and clear the area to the greatest extent possible. If someone has become violent, other people need to be kept safe as well.

Now, the bus driver pulled over once he realized what was going on, and tried to help. However, it’s difficult to tell from media accounts what he was authorized to do. This article states that “Bright Futures staff were properly trained” before Anthony Corona’s death and subsequent restraint retraining for staff, so we’d expect that the bus driver could help out safely and effectively in this situation. However, the driver told the police that he was “unaware that Corona had a plan to control his behaviour”   Also, when the driver pushed Corona’s head between his knees, he was “trying something that his supervisor said had calmed Corona a few weeks ago”. The supervisor hadn’t reported the incident to the school.

In other words, he tried a new technique that presumably hadn’t been approved for use, with no idea of how it might interfere with what the aides were doing or how it might affect Anthony Corona (and, as a result, the people around him.) The aides let this happen despite knowing (presumably) that the technique wasn’t part of the safety plan.

For twelve minutes. This wasn’t a mistake that happened because someone made the wrong decision in a moment of panic. There was plenty of time to deliberate on whether they were doing the right thing, and they continued to use a technique that they must have known wasn’t approved.

Training

As history professor and disability activist David Perry pointed out, it wasn’t so long ago that Ethan Saylor and Eric Garner died for the same reason that Anthony Corona did —positional asphyxia. No trained person should have forgotten so soon that some restraint positions can be lethal.

When you get right down it, no trained person should figure that it’s safe to keep someone’s head pushed between their knees for twelve minutes. Shame on them and the people who “trained” them.

Shame On All of Them

The institutional practices, lack of coordination, and the assumptions both underlying and arising from both aren’t things that can just be apologized away, nor totally solved by the seat belt clips that the school bought to transport students more securely. Shame on Becca Colucci, for thinking that Bright Futures Academy’s “deepest sympathy” to the family and retraining in restraint for all bus staff are enough to address this. Apologies barely sufficed when an autistic student with epilepsy had a seizure and seriously burned his leg after allegedly being left unattended by Bright Futures Academy staff in 2015. When a vulnerable person that parents have in the care of your school dies at the hands of your staff (Colucci even told police that she didn’t believe that Anthony Corona was restrained correctly), retraining staff in restraint is only part of the answer — and the tip of the iceberg, really, because restraint should always be the last resort. Another part of it is the person in charge having the decency to resign.

And shame on the California Department of Education for not making Becca Colucci do it. Anthony Corona may have not have been someone that some aides at Bright Futures Academy wanted to deal with, but to his grandmother and aunts he was a family member.

Anthony Corona’s “crime” would have gotten a non-disabled student removed from the bus and bus privileges suspended for a period, or perhaps suspension from school depending on the severity of the fight with the other student; at the very worst, the police would have been called, but it’s unlikely that charges would have been made.

Corona, however, a young, intellectually disabled, autistic man, died.

Something to think about as we start Autism Awareness Month.

Rest in peace, Anthony Corona.

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Jason Chaffetz, Health Care, and Privilege

CNN has been out at my place since yesterday, and I didn’t get a chance to get caught up on newsletters or internet because I was at work…but even from the little bit that I picked up about Trump’s new healthcare plan, I’m seeing problems.

Content Note: Classism, ableism, poor shaming, Trumpcare

Image Description: Red medical bag with a with white cross on it and a stethoscope resting on it. Keyword: Jason Chaffetz

Image Description: Red medical bag with a with white cross on it and a stethoscope resting on it.

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I like Obamacare. I was happy to see that so many people, particularly disabled people and people with pre-existing conditions, finally got healthcare. If I’d been American when my brain arteriovenous malformation was discovered, I doubt that any health insurance that my family could have afforded could have covered the cost of the surgery to repair it, let alone the cost of hospitalization and rehabilitation after the post-surgery stroke and the years of medical follow-ups. My surgery wasn’t emergency, but it was important — given that I was only 22 when my AVM caused my first brain bleed, it was likely to cause another, potentially much more serious one, but no one could say when. Would we, had we been Americans, decided to take postpone a costly surgery as long as possible, or not do it at all, and just hope for the best?

It might not have been an option. As a Canadian, I was able to make my decision based on the risks of having the surgery or not having it, and cost wasn’t a factor. Given that there was a 75% that they could treat the AVM with no ill effects, but later in life I might have another bleed while driving down the highway or holding a baby and potentially lose control of my left side, the choice seemed easy. I just hit that 10% that comes out of a major surgery in that area of the brain with severe damage, and that’s what happens when you play the odds. At least the AVM is fixed, and I didn’t have to worry about whether my healthcare was going to bankrupt my family.

I can work, but it’s complicated (ultimately because of my disabilities.) The jobs that I can do are usually part-time, low-wage, with no benefits. I’m one of the lucky ones — because I live in a low-rent building and because a government program covers the cost of my medications, I can still pay all my bills.

Jason Chaffetz, Healthcare, and Class Privilege

One of the bits about Trump’s new plan that I did hear yesterday (because it’s all over my Facebook feed) was the Jason Chaffetz interview with CNN. If you haven’t had a chance yet to hear the very definition of class privilege, take a listen (or read the transcript below the video, from 1:47 to 3:02):

Alisyn Camerota: What if it leaves lower-income Americans uninsured?

Jason Chaffetz: Well, we want them to be able to provide, have a method so that they can get access to it. There are things that we really do like, for instance dealing with pre-existing conditions, allowing people up to the age of 26 to —

Alisyn Camerota: You’re going to keep those tenets?

Jason Chafferz: Yup, these arbitrary lines of states —

Alisyn Camerota: Sure.

Jason Chafferz: So I think there’s a lot of good things that we need to —

Alisyn Camerota: But access for lower-income Americans doesn’t equal coverage.

Jason Chaffetz: Well, we’re getting rid of the individual mandate. We’re getting rid of those things that people said that they don’t want. And you know what? Americans have choices. And they’ve gotta make a choice. So maybe rather than getting that new iPhone that they just love and that they want to go and spend hundreds of dollars on, maybe they should go invest in their own healthcare. They’ve got to make those decisions themselves.

Alisyn Camerota: So, in other words, for lower-income Americans you’re saying that this is going to require some sacrifice on their part.

Jason Chaffetz: Well, we’ve got to be able to actually lower the cost of healthcare. I mean, one of the things we’re concerned about is healthcare inflation is just consuming the American budget, both for the families and and at the federal government. We have to be able to drive those cost curves down and provide good quality access. We do think that with more choice, that you will get a better product at a lower price, and that’s good for everybody on the entire spectrum of income.

Chaffetz goes on to say later that a potential outcome of the plan is more access, less coverage (3:54).

Let’s run down Jason Chaffetz’s assumptions about lower-income Americans and their lives, as indicated by this conversation:

  1. They’re frivolous and don’t make good spending decisions.
  2. They have money that they can put into saving for healthcare and just aren’t doing it.
  3. They should sacrifice even items that arguably aren’t even luxury (many people don’t use a land line anymore and depend on a cell phone) to bring down health care costs for everyone, when it doesn’t seem that he’s holding higher-income Americans to the same standard.

There’s also an implication that giving up that cell phone should be enough to provide people savings enough to get all the coverage they need, when the new plan has shown no proof of that so far. This tweet talks about the cost of a phone vs the cost of a young woman’s ankle surgery.

The GOP Doesn’t Like Low-Income Americans

It’s a relief that Trump has decided to keep the Obamacare regulations on pre-existing conditions and staying on parents’ plans until 26, and that he’s committed to making the plan portable across state lines. And when Jason Chaffetz went on FOX to further explain his comments, after social media exploded, he said that, “What we’re trying to say — and maybe I didn’t say it as smoothly as I possibly could — but people need to make a conscious choice and I believe in self-reliance. And they’re going to have to make those decisions.” That sounds much better than the plan he described on CNN.

However, I wouldn’t forget his words in that first CNN interview. GOP policies regarding low-income Americans tend to be punitive, assuming that all low-income people are either out to scam the system or irresponsible, and that higher-income people are deserving of better treatment. When we consider that the GOP also wants to cut Medicare, this healthcare bill as described by Chaffetz on CNN is all those things; even though he’s tried to walk it back, we shouldn’t be shocked if that’s exactly what Trump’s healthcare plan turns out to be.

The American Medical Association agrees that the current version of “Trumpcare” won’t provide adequate health care for vulnerable Americans. AMA President Andrew W. Gurman said in a press release about Trumpcare:

“The AMA supported health system reform legislation in 2010 because it was a significant improvement on the status quo at the time; and although it was imperfect, we continue to embrace its primary goal — making high-quality, affordable health coverage accessible to all Americans,” AMA President Andrew W. Gurman, M.D. said. “As drafted, the AHCA would result in millions of Americans losing coverage and benefits. By replacing income-based premium subsidies with age-based tax credits, the AHCA will also make coverage more expensive — if not out of reach — for poor and sick Americans. For these reasons, the AMA cannot support the AHCA as it is currently written.”

Other groups have joined the AMA in its stance, including the American Hospital Association and the American Academy of Family of Physicians.

I’m Worried

Canadian healthcare is far from perfect. Obamacare wasn’t perfect either. And I’m only learning about this new plan, and I’m willing to see how it pans out.

But I’m worried, even just after hearing Chaffetz’s CNN interview, that disabled people who can’t work and other groups living in poverty are going to suffer under this new bill. Please be prepared to fight for them.

They need your voice.

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Conflicting Advocate Hats: Alex Spourdalakis

Content Note: Ableism, murder of disabled child, suicide, abortion

Gray sad face with closed eyes. Keyword: Alex Spourdalakis

Image Description: Gray sad face with closed eyes.

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14-year-old Alex Spourdalakis was murdered by his mother Dorothy Spourdalakis and godmother Jolanta Skordzka.

And I say “murdered” deliberately, not to garner an emotional response, but because Alex’s mother and godmother did legally murder him. They gave him an overdose of sleeping pills with the intention of bringing about his death. When it became apparent that the pills weren’t going to kill him, they stabbed him repeatedly, and slit his wrists so deeply that they almost cut his hands off. They murdered him.

All this happened in 2013, but Alex Spourdalakis’ murder and the trial are back in the news again recently because Dorothy Spourdalakis and Jolanta Skordzka have been released from prison. They pleaded guilty to involuntary manslaughter and were sentenced to time served. After getting credit for the three years that they spent at the the Cook County prison, they are now free women. They spent significantly less time in prison than Robert Latimer served for murder of his disabled daughter, Tracey or that that Kelly Stapleton will for the attempted murder of her autistic daughter, Isobel, both of which were considerably less violent crimes.

Alex Spourdalakis and Two Important Conversations

As I did when I wrote about Kelly and Issy Stapleton, there are two important conversations to have when we talk about what happened to Alex Spourdalakis. One of them is what happened to drive a mother to such hopelessness that she felt there was such a lack of options for her child that his death was the most preferable. Overall, the media has painted Dorothy Spourdalakis as a woman who couldn’t get any support to deal with Alex’s specialized support needs, but the Chicago Tribune talks about how Mary Betz of Autism Illinois visited Dorothy Spourdalakis when Alex was hospitalized to find out what supports she needed, and was told that only a lawyer was necessary. The same article talks about how Dave Clarkin, a Department of Child and Family Services spokesman, said that family members refused “referrals to community-based services ranging from respite to psychological counseling.”

Why?

What is it about services that made the family reluctant to accept them?

The second discussion is about how even if there’s a total lack of services, it’s not an excuse to murder a child. And I acknowledge that the stress level for parents taking care of disabled children can get very high — it still doesn’t make killing a disabled child excusable. There’s a perception in our culture that if a disabled child is in pain, or if we figure that the child isn’t going have what we define as “quality of life”, or if care of the child or watching the child go through the challenges potentially involved with having a disability is going to take too great a toll on the parent(s), then the child’s murder not only becomes justifiable, but understandable.

If the child is disabled.

We’re disgusted by parents who kill their non-disabled children.

But when the child is disabled…different story. And there needs to be more discussion about that — there needs to be more discussion about how when you kill a disabled child, you are killing a child, period, and the deliberations of the justice system and the penalties for that action need to reflect that.

Read this blog for more about the murder of disabled children and two important discussions

Dorothy Spourdalakis and Jolanta Skordzka were originally charged with first degree murder, they should have been convicted with first-degree murder, and they should have received the appropriate sentence. Parents and relatives don’t get to decide which children get to have a future and which don’t.

I was speaking about this last week, and a friend said, “Careful…you’re starting to sound pro-life again.”

Alex Spourdalakis and Conflicting Advocate Hats

When Zika first emerged, I blogged about how abortion for ableist reasons sometimes makes me feel conflicted as someone who is both pro-choice and opposed to ableism, and how I deal with that conflict. Alex Spourdalakis’ story brought up some internal conflict as well, once my friend explained his statement…how could I be so judgemental of Dorothy Spourdalakis for denying her son the right to live based on her own needs, when I essentially gave women who had abortions a free pass for doing exactly the same thing?

“That’s *not* what I do,” I said.

“Isn’t it?”

I went home and thought about it.

And lost a bit of sleep.

And decided that no, that’s *not* what I do, although you’re certainly welcome to disagree.

Sounding the Same, But In Fact Very Different

Very soon after starting this blog and reading other peoples’ blogs, I started coming across perspectives that made me question, for really the first time, what my stance on abortion was going to be if I was going to be a disability activist. It was a more complicated question than I’d thought, and it made me fine-tune my stance to “It’s not a baby until it can live outside the mother” which can both simplify and complicate the whole business.

For the purposes of my friend’s query, however, it makes things very simple — for me.

I mentioned earlier that I wasn’t using the word “murder” in this context to evoke emotion because Alex was legally murdered. I just as deliberately *won’t* use the word “murder” when I’m talking about abortion because “murder” is a legal term that presupposes that a fetus is a person. And there’s where the rubber hits the road for me. My friend may be correct in that the language that I use to talk about the murder of disabled children sounds like the language that some (not all) pro-life people use to talk about abortion, but the two situations couldn’t be more different in my eyes.

Alex Spourdalakis was a person with rights guaranteed to him by both the United States Constitution and by the United Nations. He was a minor in his mother’s custody, which meant that she was responsible for his well-being. Her rights as a US citizen do not guarantee her a child that is easy to take care of, but in the state of Illinois a parent can voluntarily surrender a child should care of that child become too difficult for the parent to manage — it’s a drastic step involving relinquishing parental rights, but it’s not as drastic as making a profoundly ableist assumption that a disabled child has no chance at happiness in life and that death would be preferable to life in “the system” and committing murder based on those those assumptions.

Even though Dorothy Spourdalakis’ intention was obviously to kill herself after murdering Alex, her suicide note indicated that his murder was about what *she* couldn’t deal with putting him through anymore and with what she didn’t want for him (as it seems to often be in these cases.) A picture circulated through the media, showed the following excerpts from her handwritten note, touted as reasons that Dorothy believed Alex Spourdalakis was better off dead:

  • Alex will not be neglected and abused by the medical community anymore.
  • Alex will not suffer under “the system”
  • Alex will not be discriminated against anymore
  • Alex will not be treated as “retarded” or less than human because he is disabled and cannot speak for himself.

I have empathy for parents that are beaten down by a lack of support and the pain of seeing their beloved children suffering. I really do. But justifying the murder a 14-year-old who is “disabled and cannot speak for himself” in the name of getting him away from those that would treat him as “less than human” would be laughable if it wasn’t so infuriating. After all, what could be more dehumanizing than deciding that you have the right to take that child’s life based on your assumptions on his feelings about it? So forgive me if I can’t buy Dorothy Spourdalakis’ noble-sounding rhetoric.

Murdering your child because of any of the things she mentioned (or, as I believe it more accurately is, a parental desire not to see a disabled child deal with those things) is not okay. It’s simply not.

Which brings me back to what my friend said to me. As I said, Alex Spourdalakis (and Tracey Latimer, and everyone on this list of disabled people murdered by parents or caregivers, which is only current to the end of 2014) were people that were murdered. They had legal rights that a fetus (or developing child, if you prefer) doesn’t — and that I’m not invested in fighting for a fetus to get, frankly (or interested in arguing about why that position is right or wrong.) That’s a whole other fight to me, and one that, for a variety of reasons, I’m not willing to take on.

I do feel very strongly about the murder of disabled people and the how their murderers get the sympathy of the public and media and the leniency of the justice system. It’s a fight that I *will* take on because it’s simply not right.

Bottom Line

So that’s why my friend’s challenge to my thinking didn’t make me lose (much) sleep — and why I’ll continue to fight to make sure that:

1) There’s more investigation into why parents get pushed into these places of desperation, where murdering their disabled children seems like the only option for dealing with the challenges that they encounter on that journey

2) Ableism in all forms continues to be recognized and eliminated as much as possible.

3) Safe and affordable abortion is available to all women, regardless of their reason for making that choice.

I can manage wearing conflicting advocate hats, but I’m glad that people call me on it when my thinking appears inconsistent. I need that to stay the best advocate I can be.

Rest in peace, Alex Spourdalakis. I will not forget you.

Please read the Autistic Self-Advocacy Network’s Statement on the Sentencing of Alex Spourdalakis’ Murderers

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