My Brain AVM: Disability and Prayers

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

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

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

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

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

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

***

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

“No prayers, please,” responded one person.

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

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

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

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

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

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

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

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

Disability and Prayers: Some Boring Background About Losing My Religion

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

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

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

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

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

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

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

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

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

Disability and Prayers: My Position

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

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

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

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

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

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

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

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

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

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

Disability and Prayers: If You Want to Pray…

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

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

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

I’d really like disability-friendly governments.

I need…

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

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

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

Disability and Prayers: Bottom Line

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

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

Visit Belinda Downes’ Facebook Page – Coffee with Belinda Downes

 

 

 

Save

Save

Save

Christmas 2016

A holiday greeting - the words "Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words.

Image Description: A holiday greeting – the words “Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words.

***

I had hoped to find time to do a new Christmas post for this year…for a variety of reasons, I didn’t. In the past I’ve reblogged my 2014 post, “When Christmas Doesn’t Mean Family”, and I’ve decided to again, with apologies to those who have read it before. I read it it over and it reminded me of something that I’ve been thinking a lot about this Christmas season…that for all the fuss about whether it’s more appropriate to say “Merry Christmas” or “Happy Holidays”, either well-intentioned greeting makes a fundamental assumption that for some people there’s a hope in the universe of finding joy in late December and early January, whatever festival they celebrate or don’t celebrate.

For some people, for any number of reasons, the holidays just aren’t happy times. And it’s very difficult, when you feel like you’re just holding on, to find a place in society from November onward where it feels okay to say, “I’m feeling sad/angry/frightened/lost/hopeless/lonely/confused this Christmas. Not merry. Not happy. Not jolly. I am barely holding on and trying my hardest just to get through the holidays.”

I have had a couple of Christmases where I have felt like I was just holding on. To all the people who are feeling that way — you are not alone. It’s hard to believe when it feels like you’re the only one who can’t get hold of the Christmas spirit, but there are so many more people than anyone thinks who dread this time of year.

And if you start to doubt that you can get through it, you need to reach out to the people that want to help you — even if you feel like there’s no one in your life in your life that will listen, you can always call a help line…click here to find the suicide hotlines that operate in your country.

You can get through this. Please reach out for help if you need it.

May we all experience the joy and peace of the season, this Christmas and throughout the year.

Here is “When Christmas Doesn’t Mean Family”

***

In the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family…didn’t I agree?

I nodded, because it seemed expected of me, but the question irked me. I’m not sure why I’ve felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won’t. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that’s not always the case.

When Your Family Has Forgotten You — Or Doesn’t Even Know You

When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn’t have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn’t be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes — they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. “Show me the families that will do this,” I said, Sometimes I still say this, when I hear people suggest that the government shouldn’t be caring for disabled people, but that volunteers and churches should be doing it — “Show me the families”.

“Show me the families that will do this,” I said to my professors, “and tell me what’s wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,”

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty’s position that day — and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you’re at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you’d suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that’s an assumption on my part. I’ve never asked anyone about this.)

And it’s not really the point, anyway.

Christmas Isn’t Just for People with Family

My family used to have Ivy over at Christmas (we don’t now, for a variety of reasons), but Ivy is my very special friend and we didn’t think anything of it. I believe that we were an exception. There’s still a perception out there among people that don’t have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn’t institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren’t fully integrated. Friendships with the “normals” don’t come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren’t. And, of course, this isn’t the only group in society with some members that may not have family with which they can spend Christmas, or who just can’t, as much as they’d like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you’re spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you’re alone, whether it’s by circumstance or choice, merry Christmas and all the best of the new year to you as well…the joy of this season isn’t just for those who are surrounded by family, and I hope it finds you well.

Save

Gathering My Thoughts

Yesterday I was checking Twitter all day, keeping up with how the story around the shooting of Alton Sterling in Baton Rouge was developing. And last night I was profoundly affected by the video of the shooting death of Philando Castile in front of his girlfriend and small child.

I know that as a white person, I will never truly understand how difficult these past two days have been for the black population of America, and I’m grappling with how to write how these events have affected me while being the most respectful and sensitive that I can to black people who are truly hurting.

It may take me some time to figure out how to do this…I may write about other things as I think about what I want to say…but know that I am trying to listen, and stay present, and learn, because I *am* privileged and sometimes I don’t know what I don’t know…

I am trying to work my way through some things that I need to, without making what happened about me.

I am really just trying to become the best person that I can in an ugly world where there aren’t many answers. I don’t always know how to do that, but I really do want to…let’s be patient with each other.

Happy Fourth Blogaversary to Me!

So wow! I’ve been doing this for four years. That’s one of the longer commitments I’ve made since the stroke. And considering that I really only started this blog to keep me busy during a particularly long period of unemployment…well, I’m going to celebrate hanging around for this long.

Image Description: Keyboard, mouse, and coffee mug (all white), plus a plant in a white pot, sit on a workstation light green wooden desktop. “I Love Blogging” is also written on the desktop; the “Love” is represented by a blue heart.

***

Especially since I could have blogged about a lot of things, and I chose to blog about disability…I think that’s significant. There were things that I needed to say. I’d written about disability before, in a (now out-of-print) book of personal essays, and what was in the book was what I needed to say about stroke and disability and recovery at that point, about six years after my surgery and stroke. But at that point, although my volunteer and professional experience in the disability sector had made me very capable of speaking about discrimination against disabled people, I didn’t know that this discrimination was called ableism, and just how insidious it could be. I could tell you that being called “inspirational” made me uncomfortable, and why, but I couldn’t talk to you about inspiration porn. I could talk about how environments disable people when they’re not accessible, but I couldn’t talk about the differences between the medical and social models of disability.

And I knew only the very basics about autism.

And the government considers me “trained” – I have a Developmental Services Worker diploma, which is the certification that government prefers that front-line workers possess in order to work with intellectually disabled people.

It’s been through the research that I’ve done for blogging here, the conversations with other disabled people, their families, and their caregivers with whom I’ve developed (mostly online, but in some cases quite close) relationships, that I’ve learned that, even after 20 years combined years of volunteer and professional experience of working with people with disabilities, that I had a world to learn…and took my first steps toward becoming more aware of how much appalling/icky/brutal/infuriating/insidious/none of the above (insert your favourite adjective)/all of the above ableism there is the world, and of the ways ableism was present in my thoughts and words.

It’s been quite a ride, and I thank all of you for reading what I’ve writing, for educating me, and for passing on my work. Onward into Year 5!

Also…

I didn’t write a Stroke State of the Union Post on the anniversary of my surgery this year (May 29). I tried – a couple of times. But I couldn’t get it to stop reading like a list of “Here’s what I can do now and what’s still an issue.” I know that people kind of like to hear that, but it’s not really what I wanted to focus on this year, the 15th anniversary of my stroke. I couldn’t figure out really what I wanted to focus on. Maybe…just the couple of important things that I’ve learned this year.

I’ve talked before about how I have trouble asking for help when I need it, for the things that I really do need help with. I’ve spent a lot of therapy time on that, actually. This year, even though it was difficult, I asked for help…sometimes with small things, some bigger things, and once for something that was ongoing and quite significant.

And, shock of shocks, the world didn’t end!

People seemed happy to help, and I really tried hard to believe that 1) They would tell me if they didn’t want to help and 2) That it’s okay, really okay, to admit that I can’t do everything, that I’m worthy of help when I need it, and that it’s okay to ask.

Obviously there are some issues here, and I’ve been trying very hard to work on them. I’m not sure where they come from – perhaps that awareness will come later.

I’ve learned about this year about chronic pain and its effect on a person. Some people experience severe pain after a stroke. I did not. I’ve never experienced any sort of chronic pain. But this year, after New Year’s, my left thigh started to hurt.

I didn’t think anything of it for quite a while. My niece and I had spent a lot of her New Year’s visit playing…playing with Gillian always ends up including “Hide and Seek” and building forts out of couch cushions and a lot of her jumping on me, and I love every minute of it, and there was plenty of opportunity to bruise my leg somehow. I was also falling asleep far too much on my couch over the holidays, watching Netflix on my new TV, and I was convinced for a long time that my leg was sore because I’d just “slept on it wrong.”

But in February, when I was still having pain in my thigh getting up from a seated position, and walking when I tried, I visited the doctor. X-rays showed nothing, and in March, with the pain getting worse and worse, I was referred for an MRI.

In Canada you can wait a while for imaging if you’re not an emergency case. In April and May I frequently could barely walk, and then the pain let up a bit for the nicer weather in June. By the time I had the MRI done a couple of days ago, the pain had faded, and is now fairly easy to live with.

But it’s given me a whole dimension to the empathy I’d previously felt for people who are living with any sort of chronic pain. It’s difficult to get motivated to do anything when pain makes it difficult to walk. I generally do a lot of walking at this time of year, but that’s been difficult. Not knowing what’s going on has been more stressful than I thought it would be. And this is localized pain, very mild most days compared to what a lot of people live with. It’s been an eye-opener, thinking about how other people must cope with much worse…and so gracefully. I don’t know how they do it.

These are some of the thoughts that have gone through my head this year.

I am finding it difficult to wrap my head around the fact that it’s been 15 years since I had my stroke, and don’t know what to write beyond that. More on this later, likely.

Save

Deliciously Disabled – Accessible Sex Party Planned for Toronto in August!

the word "sex" in uppercase green-blue letters on a pink backgroundAnalyticsI live not-so-far from Toronto and visit there fairly frequently, so I know that it’s not on the cutting edge of accessibility. Only 34 of the city’s 69 subway stations are accessible, for Pete’s sake (but all the subway trains are accessible, so that’s something, I guess). So good on you, Toronto, for hosting Deliciously Disabled, a sex party that’s completely accessible.

Well, not that it’s a city event. More like it’s just being held in the city. But significant nonetheless.

Deliciously Disabled is a private event being organized by disabled activist and academic Stella Palikarova and Andrew Morrison-Gurza, disability activist and consultant. The event will be taking place at the Buddies in Bad Times Theatre, which is fully wheelchair accessible, on August 14.

Deliciously Disabled – What I Like

The thing that I really like about Deliciously Disabled is that it’s not just for disabled people, and that the organizers are really trying hard to get that message across. I’ve been to events for disabled people supported by specific agencies that were also supposed to be open to the general community, but really did end up being segregated events – the way it seemed to work was that community members wouldn’t be turned away at the door, but it wasn’t an issue anyway, because they didn’t know that they could come.  I love that there are actually 40 reserved spots for non-disabled to come and enjoy a sexy evening (which isn’t just sex, this article says – there’s a place for sex and nudity, but “guests can also don masks, watch a burlesque performance, or attend a toy workshop.”)

I also think that it’s just a great idea in general.  Sexuality can be a bit more complicated for disabled people – potential partners can’t always handle talking about barriers, or their concerns that they’re going to hurt the person, or any questions that they may have. This seems like a great, inclusive opportunity for disabled people (and their partners, for those that have them) to explore sex and sexuality in a barrier-free environment. There are 25 spots reserved for wheelchairs., and a call has gone out to support workers to volunteer to provide assistance to those who need it.

Deliciously Disabled – What I Don’t Like

Actually, there’s nothing about the event itself that I dislike. What’s frustrating me is the icky ableism that the media coverage of Deliciously Disabled is bringing out in Jon Q. Public, and in some of the media coverage itself – the Toronto Sun in particular. I don’t know why I’d expect anything else from the Toronto Sun, but Mike Strobel’s article on Deliciously Disabled was…problematic.

First, it was inaccurate. This isn’t the first time Toronto has tried something like this – in 2007, organizers tried to get something similar, Acexxxable, off the ground, but it seems, from the limited information that I could find on it, that it had too much trouble finding an affordable accessible space. Second, Deliciously Disabled is not an orgy. It’d be nice if a national newspaper took this seriously enough to get its facts straight.

Second, while not outright mocking, Mike Strobel’s piece definitely edges on it.  This bothers me because…this stuff isn’t a joke. I like that there’s a really celebratory tone about Deliciously Disabled, but there are some serious issues prompting it, and a journalist skirting the edge of mocking it isn’t appropriate – it invites others to mock it, as we see in the comments:

“It must be a hell of a sight – someone with cerebral palsy having an orgasm! Hilarious!”

“Oh my, who will change the diapers?”

and this bit of “hilarity”:

Q: What is the most difficult thing about eating a vegetable?
A: Getting her back into the wheelchair after.

Granted, there’s a hearty of mix of comments from these very ignorant people and from pearl-clutchers who may be responding more to the word “orgy” than to the idea of disabled people participating in one. It’s difficult to say. However (and I acknowledge that this may be just me) I find the mocking more offensive than pronouncements that Deliciously Disabled is “disgusting” and an example of the world’s “depravity”, or just a step away from a “pedophile sex party” hosted by a “lady so sick she needs her head examined”. I can shrug that shit off, quite frankly, because it’s so profoundly ignorant. But mocking implies that a person know better and yet still making a choice to be ignorant, and that’s harder for me to take. Especially from a journalist.

And as for me…I really need to stop reading comments on articles, because between this, and all the Caityln Jenner hate (great article on that here, btw) and Duggar support last week, I’m worn out.

However, the poll on the same Sun article did say that people who responded were overwhelmingly in support of Deliciously Disabled. I don’t know if that means “Good on them, as long as I’m not involved” or “Good on them, I’d love to join in” or “I’m checking this because there isn’t a ‘I don’t care’ box”, but maybe it means that the negative comments are just coming from a small fringe of people who really are opposed and/or ignorant. It’s just unfortunate that sometimes those small fringe groups can scream really loud (look at the birther movement around Obama.)

Deliciously Disabled – How Can You Help?

Talk to people about events like Deliciously Disabled and why there’s no reason to be threatened by them.

Talk about the myths surrounding disabled people and sexuality. Let people know that the information that society gives them about disabled people and sex and the assumptions that people tend to make based on those assumptions (like, “Disabled people don’t like to have sex”) generally aren’t true.

Parents with disabled children in the school system, ask teachers what kind of sex education your child has already received and can expect to receive and why it’s differing from what non-disabled children are receiving (if this is the case). Disabled children, like all children, need sex education that teaches about boundaries, self-esteem, and safety, as well as the biology.

Make sure (whether it comes from school, medical staff, and agency, or you) that your child’s transition plan for high school to adulthood includes the education on relationships, sexuality, and sexual safety that they’re going to need to safely explore this part of life that most adults need to make them feel whole.

As Stella Palikarova said, “This is really going to take the co-operation of everyone in society,”

So, what are you doing on August 14?

 

Why Ridge Quarles’ “Inspirational” Act Was Not Inspirational At All

Empty wheelchair against white backgroundSo…it’s been over a month since I’ve been here, for a variety of reasons. It’s not like there hasn’t been anything happening that needs or deserves comment (notably, the reelection of the Tory government in Britain under whom the disability support system was so ravaged by cuts that the UN investigated at one point), but it’s been a matter of time, and energy, and the feeling that I’m saying the same things over and over again and ultimately boring people. But I saw this story last week about a disabled woman and her experience at a Qdoba fast food restaurant in Louisville, Kentucky (and a young man named Ridge Quarles) that’s roused me.

I saw the video, which is now “going viral” and the accompanying story on Huffington Post’s “Love Matters” page. Obviously meant to warm the heart and inspire the spirit, the story’s headline was “Qdoba Worker Feeds Customer with Disability, Reminds Us to ‘Help Someone Every Day’.”

Ridge Quarles, an Qdoba employee at the time, is the article’s main focus. But the article is also about one of the restaurant’s “regulars”, a woman that uses a wheelchair and travels to Qdoba by what sounds like a city-run wheelchair transit bus. Ridge Quarles says that she’s been coming for 5.5  years, often enough that the staff knows what she’ll order, and that she’s told him that the restaurant is his favourite place. He’s being lauded because after getting her set up at a table one day, she asked Ridge Quarles to feed her, and he did without hesitation. Another customer, David Jones, was moved by the gesture and decided to film it.

After all, who would take the time to help a disabled person who can’t eat by herself? This must be an extraordinary young man.

Or, you know, a human being who values helping other people when they need it. Despite the comments on the article lamenting the lack of people like that, I know a whole lot of them, and they don’t get a newspaper article every time they do a good deed. However, because this woman is disabled, Ridge Quarles’ action becomes inspirational.

As one of the commenters points out, this is inspiration porn. Even though it’s by no means bad to give assistance to anyone, disabled or non-disabled, that requests it (as long as you’re sure that your assistance isn’t actually going to hurt, like if you’re asked to do something requiring training that you don’t have), the message of this article is, “Go out and make your day better by helping someone in need, like this disabled woman.”

But we’re not there to help you feel better about yourself. We are people with fully-formed lives and stories and complex needs, and it’s not inspirational to reduce this woman to an object on which to be acted.

Ridge Quarles and the Objectification the Unknown Qdoba Customer

And for those who would argue that this disabled woman was not treated as an object, let’s unpack this a little:

  • No one, including Ridge Quarles, appears to know the woman’s name, despite the fact that she’s been coming to the restaurant for over 5 years. This account says that her name is withheld for privacy reasons, but all the other ones that I looked at said something to the effect of “We don’t know her name or her story”. She comes to the restaurant regularly – how hard would it have been to try to find out for the story, so that she can make a decision about whether she not she wants to be named, or to give her perspective if she desires?
  • Despite the fact that no one knows her name, no one has any problem with using a video that someone filmed presumably without without her knowing it (some accounts go so far to say that the video was secretly filmed) of someone assisting to her to eat in a newspaper article without her permission, as if she’s a prop in Ridge Quarles’ “it-feels-good-to-help-people-go-try-it-today” story.
  • She can’t even get into the restaurant until an employee notices her and opens the door for her, or a patron notices her and holds open the door. Where is the electric door in this restaurant? Has anyone on staff at this particular Qdoba questioned, on the basis of her not being able to get into the restaurant, whether an electric door needs to be put in?
  • Is it just when she asked for support with eating that anyone who worked in the restaurant, after 5 years of her being a customer, noticed that she needed support with eating? If not, did anyone ever think about what responsibilities they had as people observing something concerning about the care of a vulnerable person? If not, how did they miss it?

Not particularly tough questions…just ones that should restaurant staff, including Ridge Quarles, should be asking after serving for 5 years a disabled customer who should have some assistance and arrives with none, particularly the one involving whether there’s a way for her to actually get in and out of the restaurant.

Now, obviously those bullet points assume the best of the woman and the worst of the restaurant and its staff, which might not be the case. Perhaps Qdoba campaigned headquarters tirelessly for an electric door, or didn’t notice that she needed assistance to eat because she’d never showed any signs that she needed it. Perhaps Ridge Quarles actually does know her name and *is* refusing to give it out to respect her privacy. The damage was arguably done when Jones put the video online, but that’s not Ridge Quarles’ fault.

The reporting seems murky, and varies across websites, which is problematic in itself. Still, stories like this also should prompt us to ask how a person who (going by what we read in the story) needs some very basic accommodations and/or support ends up going without when out at her favourite restaurant, regardless of who is supposed to provide it.

Discussion Trends

And some commenters on the Huffington Post article did ask this. But people weren’t interested in discussing it. Some were criticized for bringing it up and “ruining” the story. One disabled commenter was asked, “Bitter much?”, prompting a comment from another about how quickly the public perception of disabled people changes from pity to anger when we start to assert ourselves.

All I know is, my first reaction after reading the story was to cringe and think about how terrible cuts to services really must be when a disabled woman who needs assistance to eat has to go to restaurant alone and hope that someone will 1) Help her to get inside 2) agree to help her to eat, and how icky it is that a piece about those issues becomes inspiration porn.

Don’t get me wrong…I’m glad there are people like Ridge Quarles in the world, who happily help others in need without expecting anything in return. But I’m also sorry that there’s a need for them, and that important aspects of those stories get over-looked because they’re not “inspirational”.

When I discuss a video, I generally embed it. But, granted that it’s so difficult to know from news accounts this woman’s feelings about being in the video, I’ve chosen not to this time. It’s easy enough to find.

Rand Paul Doesn’t Belong Anywhere Near the White House

Rand Paul with American flag to his right and Kentucky flag to his leftWell, Election 2016 is officially underway, with Ted Cruz and Rand Paul the first two to officially declare their candidacy.

(ETA: I see now that Hilary Clinton threw her hat in the ring yesterday and that Marco Rubio is supposed to today.)

For readers that have joined this blog since the last US Election, be warned: I talk about US Elections, even though I’m Canadian citizen. I talked about Election 2012 far too much. But I was genuinely curious about how it was going to shake out for disabled people in America. Most candidates dropped some general hints in their comments about their plans to bolster (or not bolster, as the case may be) the social security net, but few addressed the disability issue directly, or took the time to address a group large group of disabled people that invited the candidates to speak to them.

I already feel confident in making some predictions about Rand Paul based on past record.  He voted “No” on the ratification of the CRPD (as did Rubio, for what it’s worth) and several months ago made some off-the cuff but inaccurate comments about SSDI and fraud:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half of the people on disability are either anxious or their back hurts — join the club. Who doesn’t get a little anxious for work and their back hurts?  Everybody over 40 has a back pain. And I am not saying that there are not legitimately people who are disabled.  But the people who are the malingerers are the ones taking the money away from the people who are paraplegic, quadriplegic. You know, we all know people who are horrifically disabled and can’t work, but if you have able bodied people taking the money, then there is not enough money for the people who are truly disabled.”

After taking some time to actually learn some statistics about disability in America, Rand Paul discovered that people get disability checks for more types of disabilities than backaches and anxiety…that the people who have these disabilities don’t make up over half the people that collect disability checks, and that the fraud rate for SSDI is actually relatively low. He tried to walk the statement back, but obviously I remember it – chances are others do as well. Besides, his Libertarian “If you haven’t prepared then I shouldn’t have to help you” leanings aren’t going to make him very sympathetic to the needs of disabled people, I’d imagine, or to those of families who have disabled children that may require costly supports and services.

But I’m actually here today to comment on another story regarding Rand Paul. It’s not disability-related, so I ask for your indulgence as I meander a bit.

I came across a video on my Facebook timeline, entitled “Rand Paul Releases Sexist Condescension on Two Women Journalists”

“Interesting,” I thought, letting the video run.

I ended up watching it several times, because I couldn’t believe what I was seeing:

Rand Paul Needs to Learn to Play Nicely with the Ladies

Now, I acknowledge that NBC’s Savannah Guthrie took a bit of time getting to her actual question, but someone needs to explain to Rand Paul that even when he feels like a like a lady journalist has smacked his ego and left a boo-boo, mansplaining proper interviewing technique to her makes him come across like a little boy throwing a tantrum because a girl bested him at the spelling bee. He’s playing in the big leagues now, where other candidates smile and move on when a journalist’s line of questioning annoys them.

He’s going to have to suck it up.

*I* can be annoyed, though, and I was. I was annoyed on Savannah Guthrie’s behalf, that he spoke to her the way he did and that because of her position, she couldn’t really say anything back to him.  I think that she was annoyed, too.

And then I saw him “shush” the second reporter, CNBC’s Kelly Evans, and my eyes narrowed, and I moved from annoyed to downright angry.

My mother was not a woman who would be “shushed” and she didn’t raise my sister and I to be “shushed”. I like to think that I could have kept it polite in that reporter’s circumstances, but I can guarantee that I would have said, “Please don’t “shush” me.”

“Shushing” anyone is rude, and disrespectful, and not what I’d expect from a man who wants to be President. He’s quite rude over the course of this whole interview, in fact, especially towards the end:

He joked about this later to a male reporter who asked about vaccines: “You don’t want to be shushed, do you?”

But I don’t think that Rand Paul would “shush” a man. I think he sees men as colleagues and women as little girls, ultimately to be tolerated, but chastised when they misbehave.

Rand Paul Didn’t “Shush” Megyn Kelly

A bunch of people have called Rand Paul on this behaviour, including Fox’s Megyn Kelly. I have a love-hate relationship with Megyn. Sometimes she’s right on. Sometimes she’s ridiculous. A Jezebel reader caught it nicely, I think, when she said that Megyn Kelly is very good at speaking about issues that affect her – well-off, white, non-disabled (my addition) women. But on these issues she’s quite vocal and can be quite compelling, and her take-down of Rand Paul during an interview with him for how he treated Guthrie and Evans was fairly gutsy – gutsy enough that he didn’t try to speak over her, although you can see he wants to.

She held his feet to the fire, and I think she caught him off-guard. Who’d have guessed that female journalists won’t always defer to you, huh, Rand Paul?

But I was waiting for him to try and talk over her. I was watching him, seething, forgetting all the times that I’ve disagreed with Megyn Kelly, seeing her the way I see my sister, my friends, my colleagues, the women I’ve supported over the years, and thinking:

“Don’t you fucking dare shush her.”

I don’t want Rand Paul in the White House (not just for the reasons I’ve talked about, but this is getting long.) I’ll try not to write too much about Election 2016…but plan on hearing that again.

My AVM Story: Working “Out There”, Working on Balance

Grey silhouetted hand. From index finger and thumb dangle a scale with "Life" in purple capital letters on one plate and "Work" in blue capital letters on the otherIt took a couple of years after my brain surgery and stroke, but eventually I was well enough to work.

It’s always been part-time. Work in the educational and developmental services sector is always part-time and contract when you’re just breaking into it these days, and in the area in which I live, work in general is usually part-time and/or seasonal. Most people work a couple of jobs to make ends meet.

Until recently, it’s been rare for me to find more than one job at a time that I can actually do, given my disabilities and the restrictions that they impose on me, although with freelancing there have certainly been times where I’ve worked the equivalent of full-time. But a writing job in my apartment and a desk job “out there” don’t necessarily require the same amount of energy from me, as I’ve recently discovered.

Since September, I’ve been working at a local computer centre, created especially for people who want to do online learning. It’s part of a government program, and a good one. There’s a small fine arts community college in my community, but anyone who’s wanted to pursue post-secondary education in just about anything else has had to take the big, expensive step of moving to a larger centre and attending school there, or commuting at least 2.5 hours round trip per day. With the increasing number of programs offered totally or almost totally online at Canadian universities and community colleges, the Contact North program allows people in rural communities like mine to get assistance choosing a program, get signed up, and to have a place with fast internet access to do their work if they need it.

Most weeks it’s not a whole lot of hours. But some weeks it has has been. And recently there’s been the welcome addition of a writing/research job with a small media production company in my town, for two or three days a week. I some of that work from home, but I like going into the office at least one day a week. My last two jobs haven’t been office jobs. I miss that environment.

I come home at night and catch up on with my freelancing, and often fall asleep at the computer as I’m working. I do a lot of catch-up on weekends.

I hear people who have had strokes talk about how they’re much more tired than they were before, and I remember when that was really the case for me. But now I tend to think, “That’s not me anymore” and I push myself pretty hard sometimes when, really, I don’t know how much of my brain is still damaged, and to what extent, and how it affects me.

I can see the effects of some of it, of course. But I don’t know if even my doctors can say for sure  what all of the effects of the stroke were.

Everyone has to find a way to balance work and other aspects of life, and to figure out how to stay healthy and to schedule time for everything that they want and need to do. I’m grateful to be able to work and to have a lot of work right now, but I’m sorry that it’s not leaving me a lot of time and energy to write. I’m working on that. I’d like to be here more.

I’ve never been very good at the life balance thing. I’m trying to learn!

Why I’m Sad that Jon Stewart is Leaving “The Daily Show”

jon stewart
By Martin Monroe (http://flickr.com/photos/willismonroe/73332530/) [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons
Jon Stewart in a disability advocacy blog?

Yes. And not just because he did a story about how silly it was that the Convention for the Rights of Persons with Disabilities wasn’t ratified in the US the first time around (“It’s official: Republicans hate the United Nations more than they like helping people in wheelchairs.”)  I remember it well, because I posted on my Facebook page: “Jon Stewart is doing a disability advocacy story. This man is awesome.” (The actual clip is here, but people outside the US may not be able to watch it. Sorry…clips from Comedy Network shows that everyone can see are hard to find these days.)

I’d already declared my admiration for Jon Stewart several times on Facebook, usually out of the blue and for no particular reason, so my friends weren’t really surprised. But even I’d been a bit surprised that an issue that got next to no coverage in the mainstream media had merited a coveted spot in Jon Stewart’s show, and I really was grateful to him.

After his announcement last Tuesday night that later on this year he’ll be handing over the reins to someone else, I found myself much sadder about it than I felt like I should have been. Until I read a Facebook comment on one of the many, many articles that I read later in the week about his impending departure that said (paraphrasing) that this was the only time that the writer had heard about a TV personality leaving a show where he’d walked around feeling sad for the entire next day. And I realized that it’s not just me that’s already dreading the day that Jon Stewart leaves The Daily Show.

Discovering Jon Stewart

I started watching The Daily Show when I moved out on my own after my stroke, in 2004. I’d just missed George Bush being elected by a couple of months. Between watching Jon Stewart and Stephen Colbert, just in his sophomore year of his own show, a passing interest in American politics became a mild obsession. As the 2008 Election approached, I was dumbfounded. I’d never paid attention to this process before. For someone who was used to federal elections taking six weeks, from announcement to close of polls, it astonished me, and, frankly, sometimes disgusted me. I saw those emotions mirrored back at me every night from Jon Stewart behind his desk at The Daily Show.

Before I knew it, we were doing it again for 2012, and this time I felt knowledgeable enough (and passionate enough) to write about here. The Daily Show was no longer my only source of American news. I watched CNN in the mornings, commiserating with people over Twitter about how terrible…how absolutely terrible…the morning show format was. Unable to get MSNBC or Fox with my cable package, I listened carefully to what people said about them, watched clips, talked to people, formed opinions. I started to realize that I already knew about events that Jon Stewart talked about on the show, feeling a bit guilty that between my consumption of British news to keep up with what was going on with welfare benefit reform, and of American news simply because I was fascinated by it, I knew more more about what was going on in two other countries than I did my own. I try to balance that out now by catching the Canadian news at 6 pm.

What Jon Stewart and “The Daily Show” Mean to Me

Rolling Stone Magazine put Jon Stewart’s power over bleeding heart liberals like me nicely in this article:

“…his famous request to Tucker Carlson and Paul Begala of Crossfire — “Stop hurting America” — was a not-so-quiet refrain under everything the host did.”

That “Crossfire” appearance is widely credited to be one of Jon Stewart’s finest moments on television (and the moment that caused the cancellation of the show several months later).  Paul Begala had this to say about it when he heard about Jon Stewart’s announcement last Tuesday.

Watch the “Crossfire” interview in question (where Jon Stewart does indeed call Tucker Carlson, now on Fox, a “dick”…I hadn’t caught that until I read Paul Begala’s comments):

But the real reason I’ll miss Jon Stewart? I’m a TV person, as much as I don’t want to be. I live alone. I keep the TV on for noise when I’m doing other things, and when I’m feeling sad/lonely/overwhelmed/anxious, I watch for distraction. Once I moved out on my own, I wasn’t sure I’d ever find a job, but I did. I was a supply Educational Assistant – I was told that because of my disabilities, I wouldn’t be called very often. I got another job. I spent 5 years helping some very brave disabled young people and their families some hard battles that took a lot out of all of us, lost the job because there wasn’t any other work that I could do in the company with my disabilities when my position was cut, and couldn’t find another job for over a year. The sitcoms to which I went for laughs and distraction came and went.

But most weren’t very funny. Jon Stewart and The Daily Show consistently g0t a laugh – sometimes the first laugh in an otherwise dismal day – from me. When the day’s been long and you’re wondering how you’re going to get through the next one, that’s a lot, right there. Jon Stewart gave me a laugh, spoke right to my despairing liberal heart, and made me feel like, somehow, it was going to be okay.

I’ll miss that.

But I understand that no one can do the same job forever.

So, best of luck, Jon Stewart. And thank you to readers for letting me meander a bit…

Revisiting The Measles Vaccine Debate, in Light of Disneyland

measles vaccineApparently I need to blog about this measles vaccine business again.

It’s over a year since I talked about this, when there were small outbreaks in Canada and the US. The CDC reported 102 cases of measles at the end of January, most stemming from an outbreak at Disneyland in December.

No, it’s not a national emergency, although measles is “one of the leading cause of death in young children globally” (Read more here). The chances of a healthy person dying of measles in the US are fairly slim, as the majority of severe complications and deaths due to complications occur in developing countries with weak health infrastructure and children who are chronically malnourished. (Read more here). However, the chances are still a little too high for my liking: 1 or 2 infected children in 1000 will die, and up to 1 in 20 will experience measles-related complications. I know that a lot of people aren’t with me on this, but I consider measles a serious disease. Read more here.

I’m fully aware that many, many Americans got measles before the vaccine was routinely administered, as the disease is extremely contagious,  and survived it with minimal discomfort and downtime. Measles just used to be a part of life.

But it hasn’t been for a long time. The measles vaccine almost eradicated a disease that, for some that come in contact with it, is very dangerous. It can cause ear and chest infections, brain damage, deafness, blindness, pneumonia, and  encephalitis. Author Roald Dahl wrote about how his daughter Olivia died of measles encephalitis:

“Then one morning, when she was well on the road to recovery, I was sitting on her bed showing her how to fashion little animals out of coloured pipe-cleaners, and when it came to her turn to make one herself, I noticed that her fingers and her mind were not working together and she couldn’t do anything. ‘Are you feeling all right?’ I asked her. ‘I feel all sleepy,’ she said. In an hour, she was unconscious. In twelve hours she was dead.”

I know a mother whose son can’t have the measles vaccine because of a rare blood disorder, and she explained to me very carefully about how while the lack of a measles vaccine is always a concern, herd immunity protects people like her son. However, as fewer people vaccinate, herd immunity weakens, and puts even vaccinated people at risk, as the measles vaccination is only 95% effective.

Here’s a video about herd immunity, featuring some Gummi Bears…

Herd immunity is important, And this is why, blogging about the measles vaccine this time, I’m calling the crowd out that refuses to give it to their children.

The Decision Not to Give the Measles Vaccine Doesn’t Just Affect That Child

If a parent’s decision not to give a child the measles vaccine affected only that child, I’d be truly more than happy to let parents decide what they want. But that’s not the reality. A child who hasn’t had the measles vaccination is potentially dangerous to infants, the immunosuppressed, and other people who can’t have the measles vaccine for good reasons, including people undergoing cancer treatment…people who didn’t ask to be affected by the actions of those who refuse to to give their children the measles vaccine, and shouldn’t have to be. For people who refuse to vaccinate to insist that their right to go against the dictates of public health policy based on solid science should trump the rights of everyone else to to be in an environment that’s free of the potential to catch a disease with potentially serious health consequences is just selfish.

Yes, you parents who aren’t vaccinating your children against measles. You’re selfish. And if no one’s told you that yet, it’s about time that you heard it.

“But Autism”

I’ve read the reasons why parents aren’t choosing to get their children the measles vaccination. I’ve yet to hear a substantially-supported argument in favour of refusing to vaccinate, and this includes “Big pharma” and “toxins” and especially the “But autism” thing. In fact,  I’m flabbergasted at how often I’m hearing about people still refusing to vaccinate against measles because of the fear of their child getting autism.

In recent discussions on this, I’ve challenged on this ableist, “but autism” angle whenever I can, pointing out (as I did in my last blog post on this topic) that the studies that “linked” autism and vaccines were thoroughly debunked. I’ve pointed out that several times this week in discussions that making autism a “boogeyman” is a tactic of so-called “advocacy groups” with questionable ethics, such as “Autism Speaks”, and that many people autistic people would tell you that they’re perfectly fine with being autistic – it’s society that has the problem.

A friend did on Twitter said the other day, “As an autistic, the fact that so many people would rather have a child that’s dead than autistic child scares the shit out me.”

“Fucking Furious”

I didn’t realize until I read that, and started typing in response, “It makes me fucking furious, which is why I’m never going to stop fighting against this ableist ‘I’d vacccinate, but autism’ bullshit,” how angry about all this I really am (and I’m not autistic, so I can only imagine how autistic people must feel). Even if there was a remote chance that the measles vaccine could cause autism (which there isn’t), I’d rather take that remote chance, vaccinate, and know  that there was a 95% chance that my child would avoid the terribly contagious measles and anything more more serious that it might turn into.  I’m not a parent, but if I was, in this hypothetical world where vaccines once in a blue moon caused autism, I would without hesitation choose to do everything that I could to ensure my child stayed warm and alive in my arms, including vaccinate, rather than, God forbid, end up one of the few with a body that just cannot take the strain of fighting measles.

The Measles Vaccine – The Bottom Line

Forgive me if I cannot understand why a fear of autism prevents parents from giving children the measles vaccine, especially since it’s been proven that the two. Aren’t. Linked. Any children that I have will get the measles vaccine, to protect them and to protect others.

It’s as simple as that.

I’m sorry that I can’t be as diplomatic as I was last time. Discussions this past week have shown me that subtlety doesn’t get the point across with this particular issue.