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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Canada Needs a Canadians with Disabilities Act

Those of you who follow me on Twitter may have noticed that I’ve been filling up your timelines a bit with some blitz activity. Depending on who you follow, you may be getting it in double or triple the amounts. If you’re Canadian, you’ve likely (correctly) figured that it has something to do with the election. Specifically, it has to do with people that would like to see the creation of a Canadians with Disabilities Act.

Content Warning: Politics, Accessibility Issues, Red Tape

Road sign against a sky with a sunburst in the upper right corner. The lower sign on the post is a rectangle, white, with "Election Ahead" in black capital letters. A white Caution sign is directly above it - a white triangle with a bold red border and a large black exclamation point centred in it. Keyword: Canadians with Disabilities Act

Image Description: Road sign against a sky with a sunburst in the upper right corner. The lower sign on the post is a rectangle, white, with “Election Ahead” in black capital letters. A white Caution sign is directly above it – a white triangle with a bold red border and a large black exclamation point centred in it.

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When I say “election”, I don’t mean the American election. Canada is having a federal election. And, like the American election for the rest of the world, this particular Canadian election campaign has seemed just endless. After all, it’s gone on for nearly three months at this point, instead of the usual 6 weeks.

You heard me correctly. From start to finish, Canadian election season runs approximately 6 weeks. Usually. This time around, it’s been three months, and the Barrier Free Campaign and disability groups supporting it have taken advantage of the extra time to get a focused message out to the Members of Parliament and the media: It’s time that Canada had a Canadians with Disabilities Act at the federal level.

Canada Has No Canadians with Disabilities Act (CDA)

America is celebrating 25 years of its Americans with Disabilities Act (ADA) – federal legislation that says that it’s illegal to discriminate against disabled people. That’s simplified, of course. The ADA serves a vital function:

prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life — to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities.

Canada doesn’t have such a law at the federal level. Ontario has a provincial law called the Accessibility for Ontarians with Disabilities Act, and advocates fought hard to get it put it in place. However, the government’s adherence to the act has been…piecemeal, at best, lately. There’s a grand plan to have all public spaces publicly accessible by 2025, with a number of accessibility standards for both physical buildings and for customer service that first the private and then public sector have had to have met by this point. The prospect of financial penalties for organizations or businesses that failed to meet the standards was supposed to keep the public and private sector moving toward meeting the standards and 2025 goal.

But the AODA Alliance has known since 2013 that, despite election promises, the Ontario government hasn’t been enforcing violations of the Act, even though those responsible for enforcing the law know that up to 70% of the private sector is violating the reporting requirement and there is money to put toward inspections and enforcement.

The Alliance tried to address non-compliance issues with the government, but it just became another example of the push-pull interactions typical of Government-AODA Alliance interactions around accessibility:

Alliance: “Here are our concerns.”

Gov’t: “We promise that we will do this.”

Alliance (Later): “What’s the status on this? Here’s a report showing how you might do it, if you need help.”

Gov’t: “We’ll have a timeline for that on you soon.”

Alliance (Later): “It’s been nearly 403 days since you promised that you’d have a timeline on when this is going to be done…”

Gov’t: “We assure you that it’s a priority.”

And time passes and passes…and I walk around Ontario towns and cities silently wondering “I wonder how many of the accessibility standards this business has met? I wonder if the guy who owns this restaurant is even thinking about the 2025 deadline yet, and what the heck he’s going to do about the fact that his bathrooms are down a full flight of stairs?”

What Would A Canadians with Disabilities Act Do?

Good question.

I’m not so sure that making the federal government responsible for making Canada barrier-free would make it happen any more quickly or efficiently, but at least something might potentially happen in the rest of Canada, accessibility-wise, for disabled people. As I write this, Manitoba is the only other province/territory with legislation that protects disabled people against discrimination. I like the idea of a national Canadians with Disabilities Act that would guarantee that disabled people have full access to airlines and trains in Canada, and to Government of Canada services and website content, and to the ability to vote in a federal election unassisted.

This doesn’t eliminate the need for accessibility planning on the provincial level. That still needs to happen. But this is an important step that Canada needs to take as a country, so that disabled Canadians and non-disabled Canadians have the same rights.

We are all Canadians, after all.

Enter David Lepofsky and The Barrier Free Canada Campaign for a Canadians with Disabilities Act

So David Lepofsky of the AODA Alliance and Barrier Free Canada (one of the most active disability activists in Ontario that I know of) has been on a Twitter-blitzing crusade for the past couple of weeks. He wants Prime Minister Stephen Harper and the Members of Parliament up for election and the media outlets in Canada to know that:

  • A country-wide Canadians with Disability Act is something that has garnered a lot of support among disabled Canadians and their advocates (true)
  • Current Prime Minister Stephen Harper promised us a Canadians with Disabilities Act in 2006 and never followed through with it (true)
  • Disabled Canadians, their needs, and their desire for a Canadians with Disabilities Act are getting almost no media coverage during this election season (true).

And I would add: America made the Americans with Disabilities Act 25 fucking years ago, and the fact that we can’t get our act together to do it is, frankly, embarrassing.

I don’t join in on Twitter-blitzing that often, but for this cause I like the idea of a bunch of MPs and media people looking at their Twitter feeds and going, “Huh. I’m not quite sure who these people are, but this is the third day this week that they’ve jammed up my feed. They sure are persistent.” Maybe they’ll even look into what we have to say.

So if you can live through the Twitter blitz until the 19th, I’d appreciate it. I’d appreciate it even more if you joined in. We need every retweet that we can get.

Canadian friends, please send a letter of support for Barrier Free Canada to your local candidates. And get out and vote on October 19th!

Note: Originally I incorrectly stated that George W. Bush signed the ADA into law. It was actually George Bush Senior. Thanks to Matthew Smith for pointing out my error.

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