Christmas 2017

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

Content Note: Christmas, “Merry Christmas”, seasonal depression, being alone during the holidays, loneliness, institutions, social isolation, roles of agency staff, Huronia Regional Centre

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It’s Christmas again, and I’ve again decided to reblog my 2014 post, “When Christmas Doesn’t Mean Family”, with apologies to those who have read it before. I like it, and there are a lot of new readers who haven’t seen it.

I’m also going preface it with the same comments I did last year…that is, 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”

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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 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 is Ivy very important to me, 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 non-disabled people don’t come 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.

My Brain AVM: Winter and Accessibility

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

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

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

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

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

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

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

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

Here’s why:

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

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

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

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

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

This Isn’t Just About Me

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

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

Here are some things to think about:

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

Bottom Line

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

So I’ll keep saying it.

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

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My Brain AVM: Thoughts on Pain

I’ve talked before about how I have a lot of privilege, considering that I had a brain AVM that required surgical intervention and that I’m now disabled. Part of that privilege is that the whole journey came with very little physical pain.  I’ve had some reminders of that recently.


Vector illustration - red grunge stamp with "PAIN" written in white letters. Keyword: brain AVM

Image Description: Vector illustration – red grunge stamp with “PAIN” written in white letters

Content Note: Chronic pain, stroke, brain surgery, dental work, friend death, Hurricane Harvey, Hurricane Irma, Hurricane Maria, Puerto Rico hurricane damage, Las Vegas mass shooting

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I got a terrible headache when my brain AVM first leaked and caused a hemorrhagic stroke in the middle of a job interview. I know now that my pain tolerance is pretty high, because I not only finished the interview (and got the job), I walked to the doctor’s office and then walked home. I sometimes get migraines, and it’s not the pain that sends me to the hospital (even though the pain certainly isn’t pleasant)…it’s that my migraines make me throw up, and after a while I have to get a shot of Gravol to settle my stomach enough to let me keep my seizure medication down.

But, like most people, I don’t like pain, and I’m glad that I didn’t experience much of it with my brain AVM and stroke. I had some awful headaches after the surgery to treat my brain AVM, but who wouldn’t have headaches after having their head opened?

My friend Jason, who had a stroke when he was a bit older than me (not related to a brain AVM; he was in a car accident) wasn’t so lucky. His stroke came with central post-stroke pain. He didn’t talk about it much, but his mother once told me that he almost always had intense pain in his affected hand. I don’t know if I could have dealt with that and stayed as positive as I have through my recovery.

I’ve had periods since my stroke where I’ve dealt with chronic pain. Specifically, I’ve injured my weak leg a couple of times, badly enough that at times even a short walk to town was too painful to think about. But the pain ended with rest, elevation, and ice.

Mouth and teeth pain is a whole different ball game.

Pain That Won’t Be Ignored

At the beginning of September, my teeth were sore – all of them, it seemed. My head was aching. My ear, which had been hurting on-and-off all summer for no reason that any doctor could find, was aching. I was pretty sure that I knew what was wrong, but a trip to my dentist confirmed my suspicions that I’d been grinding my teeth again, and needed to started wearing my mouthguard to bed at night.

“Why haven’t you been wearing your mouthguard?” my dentist asked,

“Because I don’t like it,” I said, feeling (and probably sounding) like a mopey five-year-old.

“You need to wear it, or this will keep happening.”

So I did. And when the headaches and mouth pain didn’t go away, I figured that it was just because I’d made my muscles especially sore, and went about my business. Until one day, when it felt like the side of my face literally exploded – I didn’t know that teeth could hurt that much, and with my head pounding and the stabbing pain in my ear, my dentist got me in for a same-day appointment. He armed me with prescriptions for antibiotics to treat an infected tooth and Tylenol 3s for pain control, and I went home and cried on the couch while I waited for the pills to kick in.

I’m now two weeks after a root canal, perhaps looking at surgery to remove wisdom teeth that have just broken through after not moving for twenty years, and still apparently grinding my teeth somehow without knowing it, because my mouth and/or head/ear is always hurting to some degree. I have a muscle relaxant that I can take daily to deal with the muscle pain caused by the teeth grinding, and if I take ibuprofen throughout the day I can usually keep the pain reasonably at bay. But when I’m home I often have a cold can of pop held to my jawline on the right side of my face, because…numb is good.

And sometimes I still cry, because even with the muscle relaxant, and the ibuprofen, and the cold pop can, everything hurts. And I really didn’t realize until this round of mouth pain just how powerless it makes you feel, to be in a lot of pain and know that there’s nothing you can do about it.  It’s lonely. It’s exhausting. I can see why having to deal with severe chronic pain drains people and makes them depressed. I can see why it makes them desperate.

I’m looking at people who have to deal with chronic pain with new empathy, and I have a renewed sense of gratitude for the privilege of getting through this brain AVM journey relatively pain-free.

Jason died a few years back from complications related to other injuries he sustained during the car accident. I miss him, but I’m glad he’s not in pain anymore.

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Pardon me while I get a little political.

Friends in the US are having a very difficult time right now – hurricanes, health care uncertainty, and yesterday a horrific mass shooting in Las Vegas. I struggled to find what I wanted to say about it, and then decided to leave words far wiser than any I could come up with…

…and ask you to please consider doing what you can to support humanitarian efforts in Las Vegas and in areas of the US affected by the recent wave of hurricanes, especially Puerto Rico.

Here’s a list of links:

Support for Victims of Las Vegas Mass Shooting

Support for Puerto Rico – Hurricane Maria

Support for Florida, Louisiana, Puerto Rico, and Texas – Hurricane Harvey, Hurricane Irma, Hurricane Maria

Portlight – Portlight was created specifically to provide emergency aid during weather disasters to disabled people whose needs might otherwise cause them to fall through the cracks. Portlight is helping with relief efforts for all hurricanes.

More of My Writing About Disability and Emergency Preparedness

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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Thoughts on “Unite the Right”, Trump, and This Blog

I have some things I want to say about the weekend’s events with the “Unite the Right” protest in Charlottesville, Virginia…but it’s mixed in with some other stuff, so bear with me…

Content Note: alt-right, Andrew Anglin, Charlottesville, David Duke, Donald Trump, Jason Kessler, Protest, Racism, Terrorism

Swatika in a bold red circle with a slash through it. Keyword: Unite the Right

Image Description: Swastika in a bold red circle with a slash through it.

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It’s important to me to be fair. I like to try, to the greatest extent possible, to see all sides of the story.

It’s been important to me not only to comment on how Donald Trump and his statements and policies violate the rights of others, but how attitudes toward:

have been ugly and at times hypocritical as well.  Not because I like him – I don’t like Donald Trump at all. But because Donald Trump and the people around him have rights, too.

I feel like I’ve been fair.

But I’ve decided after this weekend that this blog won’t be a space anymore where Trump his administration get protective space. I started leaning that way after his tweet in July about barring transgender people from the military. I see now that he’s pursuing that course of action and I just…don’t want writing a defense of Trump in light of legitimately problematic ways that he and his administration are talked about (like falling back on sexism to criticize Kellyanne Conway) to be mistaken for support for Trump’s policies and how he conducts himself as President.

I’m especially resolved on that decision after his response to the “Unite the Right” protest.

Trump’s Response to the “Unite the Right” is Unacceptable

On Saturday, Trump said:

We condemn in the strongest possible terms this egregious display of hatred, bigotry and violence, on many sides. On many sides. It’s been going on for a long time in our country. Not Donald Trump, not Barack Obama. This has been going on for a long, long time.”

It’s hard to know where to start, especially since Homeland Security Adviser Tom Bossert was (badly) defending the statement on Sunday.

And good for the GOP who are breaking rank and letting the President know that his statement was unacceptable. Credit where it’s due.

Andrew Anglin, a prolific neo-Nazi with a large following, had this to say about Trump’s speech:

“Trump comments were good. He didn’t attack us. He just said the nation should come together. Nothing specific against us. He said that we need to study why people are so angry, and implied that there was hate… on both sides! So he implied the antifa are haters. There was virtually no counter-signaling of us at all. He said he loves us all. Also refused to answer a question about White Nationalists supporting him. No condemnation at all. When asked to condemn, he just walked out of the room. Really, really good. God bless him.”

Something that the White House should consider, perhaps.

As for what I need to say on all this…

The Alt-Right Can Believe Offensive Things If It Chooses

I’m not disputing the “Unite the Right” protesters’ right to gather and protest the removal of General Lee’s statue, any more than I dispute the right of the people to counter-protest “Unite the Right.” Not because I believe in what “Unite the Right” stands for, by any means. I think that the alt-right’s beliefs are disgusting and their justifications for those beliefs are ridiculous. I think that it’s pathetic that the removal of a Confederate statue got the movement so riled up. But just because I (and most of America) doesn’t agree with them doesn’t take away their right to peaceful protest. If I’d believed for a second that the “Unite the Right” protesters had actually come with legal, peaceful protest in mind, I wouldn’t have been so concerned when I heard that the protest was in the works.

But, as we all know now (and I think we all suspected),  “Unite the Right” wasn’t intended to be just a peaceful protest of a statue’s removal. Marching onto a university campus at night with torches, yelling racist statements, isn’t peaceful – it’s a terrifying act of intimidation and violence.

They marched up the door of a church where an interfaith prayer service for peace was going on, making people scared to come out.

Counter-protesters reported that they had torches swung at them and pepper spray and lighter fluid used on them.

And that was Friday night; the official “Unite the Right” protest didn’t even begin until Saturday.

Peaceful protest was never the intent.

And I’m aware that the counter-protesters were violent as well. Earlier today, “Unite the Right” organizer Jason Kessler was  escorted away by police from where he tried to speak at the protest, after being  shouted down by the crowd and being pushed and tackled. I’m not going to defend assaulting Kessler. Violence isn’t appropriate, period. It doesn’t get anyone anywhere, and creates an atmosphere where everyone is unsafe.

However, those that are criticizing the counter-protesters for being violent need to acknowledge that the alt-right folks set the tone for the weekend on Friday night when they terrorized the UVA campus.

Their antics that night may not have legally been terrorism, but they were certainly an act of terror in spirit, escalated the next day by an act that was clearly domestic terrorism –  and because of it  19 people were injured and a woman, Heather Heyer, is dead.

As Jake Tapper said to Tom Bossert: “How many people did the counter-protesters kill?”

Headshot of a white woman, 32, with curly reddish hair and amber eyes. She is weaing pink lipstck and eye make-up in blue and purple tones. She has light freckling on her nose, and dimples. She is smiling. Keyword: Unite the Right
Heather Heyer, 32

Image Description: Headshot of a white woman, 32, with curly reddish hair and amber eyes. She is weaing pink lipstick and eye make-up in blue and purple tones. She has light freckling on her nose, and dimples. She is smiling.

Donald Trump Owes America More Than What He’s Been Giving It

Donald Trump refuses to call these things out for what they are or give any compelling argument that he’s committed to making America a place where all people truly are equal, and that makes me sick – because he’s the President, and even if the “Unite the Right” protesters had sat cross-legged in a park in silent meditation all weekend, he still shouldn’t be behind what they believe, or what any group whose philosophy involves restricting the rights of Americans based on race, sex, religion, sexual preference, gender identification, or disability believes.

And he should be prepared to say so clearly and definitively. When David Duke says about the President, “We’re doing this in your name,” a President who truly believes in an America where everyone is equal says, “Stop. Immediately. I don’t want to be associated with what you, your beliefs, or what you do.”

Duke, on what “Unite the Right” represents to him:

“This represents a turning point for the people of this country. We are determined to take our country back. We are going to fulfill the promises of Donald Trump. That’s what we believe in. That’s why we voted for Donald Trump, because he said he’s going to take our country back. And that’s what we’re going to do.”

I fear for a country whose President won’t denounce hate.  And I don’t want my blog to be a place where he gets anything that can be construed as defence anymore. I’ll be thinking very carefully about what I write about Trump in the future.

I feel like I need to make my allegiances clearer… and that I owe my American friends more than what I’ve been giving them.

I know that none of this is much help to a country that’s frightened and grieving and feeling very divided – but it’s what this Canadian has to give today.

And maybe this, because Trae Crowder always nails it…*foul language – NSFW*

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Forgetting May 29th – My Stroke Story

I wrote this when I was hosted at Medium, because when I moved there I lost the page on which I’d posted my stroke story…but I thought I’d post it here again anyway. Enjoy!

Content Note: Stroke and Stroke Recovery, Arteriovenous Malformation (AVM), Unexpected Medical Problems/Surgery/Hospitalization/Disability, Brain Surgery, Privilege

Cartoon of a woman on the phone saying, "I got kicked out of the hospital today...apparently "Stroke Patients Here" didn't mean what I thought it did!" Keyword: Stroke

Image Description: Cartoon of a woman on the phone saying, “I got kicked out of the hospital today…apparently “Stroke Patients Here” didn’t mean what I thought it did!”

***

 I realized two things last week:

  • The page that had my story on it didn’t travel over from from my WordPress blog when I moved to Medium.
  • May 29th came and went, again.

So as much as I don’t like talking about myself, I figured that I’d better put something up here on Medium about who I am and how I came to be here.

The story actually starts on November 7, 1999, when I had a small hemorrhagic stroke in the middle of a job interview in Parksville, British Columbia. I didn’t realize at the time that I was having a stroke; I thought that the sudden, intense headache was due to a migraine. I wouldn’t learn until that night, when I’d gone to the hospital because my neck was hurting and I was concerned that I had meningitis, that there was blood in my cerebrospinal fluid.

That’s bad, apparently. Bad enough that the hospital called my father in Ontario and suggested that he fly out. By the time he got there the next day, I was in a hospital in Victoria, and I’d been diagnosed with an arteriovenous malformation (AVM) in my brain that had started to leak.

AVMs, according to the National Institute of Mental Health are “abnormal, snarled tangles of blood vessels that cause multiple irregular connections between the arteries and veins.” AVMs can occur anywhere in the body, but brain AVMs are particularly problematic; they “damage the brain and spinal cord by reducing the amount of oxygen reaching neurological tissues, bleeding into surrounding tissue (hemorrhage) that can cause stroke or brain damage.”

My AVM had been with me since birth, but no one had any idea it was there until it announced itself when I was 22; because I’d not had a reason to have any imaging on my head done until it bled, no one had seen it. It would need to be treated, which could be done with radiation, embolization (inserting a special glue into the AVM via a catheter through the arterial network), or craniotomy (open brain surgery), depending on the AVM’s size and position. I could get treatment in Vancouver or Toronto. I chose to go back to Ontario to be treated at the AVM Clinic at Toronto Western Hospital. After looking at my films, the surgical team determined that with a 4% (non-cumulative) chance of bleeding each year, my brain AVM would almost certainly bleed again, and might cause damage next time. Their recommendation was to try and reduce its size with an embolization, and to then remove it via craniotomy.

Which brings us to May 29, 2000. Seventeen years ago.

I remember the night after the embolization surgery, but the days after the craniotomy are fuzzy. I’ve captured some of my first memories in Finger Spelling.

I remember the seizure that accompanied the stroke, a couple of days after the craniotomy, but I don’t remember a moment where I woke up and thought, “I can’t move my left side.” It was more a gradual realization that this heaviness was real and not going away — the doctors were evaluating my level of paralysis, and physiotherapists were coming in and tossing my arm and leg around, and sometimes people would adjust my arm because I’d moved and it was pulling on my shoulder because it had stayed where it was…

I needed help to sit up in bed, and help to lie down.

I needed help to get dressed and undressed.

Walking was out of the question. While the team tried to stabilize my seizures with IV medications, I was bedridden; the few times nurses got me up to sit in a chair by the window, I was exhausted within minutes.

Because I was now forced to use my non-dominant arm and hand, everything I did was painfully slow and inelegant: brushing my hair and teeth, eating, writing (when it was vital for me to do it).

I was in the hospital five weeks, and then I went to an inpatient stroke rehabilitation hospital. The transfer there was so stressful that I spent most of the first day vomiting. I yelled at my night nurse to leave me alone, because I was never going to walk again. I don’t remember that; I was told later.

Seventeen Years Later

I used to remember November 7 and May 29 every year, but now they tend to slip by me, unnoticed. They’re two more days where I do what I do: go to work, feed my cats, work on my writing, watch Colbert (taped; I’m trying to go to bed earlier), fool around on Facebook…

Some people call the day they had their stroke their “re-birthday” but that’s never made much sense to me. Nothing about me died to be reborn the day I had my stroke except some brain cells. I guess in that way I’ve kind of rejected the recovery movement as well, because I see so many people waiting until they’re “better” to live again, instead of constructing a life that they want to live as they’re getting “better”.

Not that there’s nothing wrong with working to make your weak side as functional as possible after a stroke, especially now that we know that the window for regaining function is much bigger than previously thought — after all, I’m still seeing very small gains in my hand over a long-term basis. But imagine if I’d sat around and waited to be sure I’d gained as much as I could in my left hand before learning to do things with my right hand? I would not be:

  • Living independently — making my own (albeit simple, but that’s okay — simple meals can be nutritious) meals, doing my own laundry and grocery shopping, taking care of my cats, keeping track of my finances, doing simple housework (I do have someone help me with housework), managing my healthcare
  • Working part-time in the community and part-time as a self-employed individual.
  • Travelling on my own — as close as Toronto (4 hr bus ride), as far as Mississippi (5 hrs by plane with a stop in DC on the way over and Chicago on the way back) and out to BC and back again by plane. Further with people with me.
  • Educating myself — Finishing up my degree in Psychology, completing the Developmental Services Worker diploma on campus at Loyalist College, completing technical writing training by distance from Simon Fraser University
  • Advocating for myself and other disabled people as an internationally-known disability activist.

Life happens as recovery happens, so might as well get prepared as soon as possible.

Dealing with Challenges

I still definitely face challenges. I was very lucky in that not long after I felt able to work, I got a great part-time job in my field that I found enjoyable and fulfilling. But I lost the job after few years because of funding concerns. Work has been difficult to find with my disabilities, and always part-time and low-security. I started writing the Girl With the Cane blog during a particularly long stretch of unemployment.

I’m learning that as I approach middle age, I’m not as resilient as I once was. I fell last winter and fractured my kneecap and I’m still experiencing a lot of pain. Several months later, I still can’t walk nearly as much as I’ve been able to in the past, which is very frustrating; not being able to at least walk to and from town and work like I used to feels like a big blow to my independence. I ask for help with transportation much more than I used to. I had a major seizure last September after being seizure-free for a few years, so driving is a few years off even if I could afford a car.

Even after 17 years, asking for (and accepting) help doesn’t come easily, but I work at it.

Canadian and Privileged

Despite challenges, I feel lucky to live in Canada, where my medical treatment and rehabilitation didn’t put my family into major debt and where getting income support and help to pay for my medications as a disabled person who couldn’t work was relatively easy (compared to what I’ve heard it’s like in the US). These systems aren’t perfect and I’ve heard real horror stories, but I’ve been fortunate.

Privileged, even — I’m white, straight, cisgendered, and able to pay my bills, with affordable health care (including dental, medicine and eye exams) with the means to access it. My family is supportive and loving. I’ve only ever felt unsafe a very few times in my life.

I’m very fortunate, and I try to always remember this as I do what I can to make the world better for those that haven’t been as lucky as I have. Some days it doesn’t feel like I can do a whole lot, but sometimes you don’t need to do a whole lot to make a difference in someone’s life. So I do what I can and hope it’s enough.

I’m looking forward to forgetting May 29 next year. 🙂

 

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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.

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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”

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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.

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15 Years Post-Stroke: Thoughts on Neural Pathways

It’s that time of year again…the anniversary of my stroke didn’t breeze right by me – I thought of it on May 30, but it was a kind of, “Oh yeah, May 29.”

And it’s a big anniversary, too – 15 years.

15th Anniversary graphic. Keyword: Neural Pathways

Image Description: 15th anniversary graphic

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The Backwards Bicycle

I found this really interesting video last on the weekend done by engineer Destin Sandlin who had some welder friends of his make a bicycle where the front wheel went the opposite direction from the one in which the handle bars are pointed – a backwards bicycle. What he found was very interesting.

 

For those who don’t want to watch the eight minutes, you can’t ride a bike built like this without a great deal of practice. Destin practiced 5 minutes every day for 8 months before he could ride it.

Destin’s takeaway from all this is that 1) Welders are often smarter than engineers 2) Knowledge doesn’t equal understanding and 3) Truth is truth.  The video got me thinking, however, about stroke, and about how once neural pathways are set to do something one way, it takes a lot of practice to override those pathways and build new ones that let you do a task another way. If you’ve ever tried to learn to write with your non-dominant hand, you know this.

Children are better at tasks involving building competing neural pathways because their brains are very plastic  – it took Destin’s son 2 weeks of practice, 5 minutes a day, to learn to ride the backwards bike, as opposed to Destin’s 8 months, because childrens’ brains change much more easily, and much more quickly, than adult brains. This is also why, if you insist on having a stroke or doing some damage to your brain in some other way, it’s good to do so while you’re young – it’s easier for your brain to build new neural pathways to replace damaged ones.

My Stroke and Neural Pathways

Knowing that, I now know why so much of stroke rehabilitation involved repeating exercises over and over again (I think). It was about taking the parts of my body affected by the stroke and moving them properly over and over until a “path” of neurons developed that supported proper movement.  This link about neuroplasticity explains the process well

For some parts of my weak side, building new neural pathways has gone very well. There are no signs in my face that I’ve had a stroke. I walk with a limp, but I can walk quickly. My arm has good range of motion. However, there’s little fine motion in my foot and almost no fine motion in my hand – at best, I can wrap my fingers around handles on some car doors, but that’s no guarantee that I’ll have the strength in my hand to pull the handle out and open the door.

I was always told that I could expect recovery in my weak side up to 5 years after my stroke and not much after that, but I learned this year, when I did some physiotherapy after a fall, that 1) I still don’t put a whole lot of weight on my left leg, ever, because my brain thinks that I’ll fall if I do and 2) Walking slowly, with a lot of concentration on putting weight on my left leg, is “training” me to walk with much less of a limp. However, I’ve laid down some fairly strong post-stroke neural pathways in the last 15 years (as I’ve learned to get around as quickly as I can while staying upright) that keep that limp pretty stubborn. And as we saw in the video, even after you lay down a new neural pathway, it’s very easy to start to functioning according to the old one again if given the chance.

So the concentrated walking requires a lot of diligence, and in most days I’m in too much of a hurry to be practicing it all the time as I should. Same with my arm and hand. I could probably get more function back if I made a really concentrated effort to use my left arm and hand all the time, regardless of how long it takes to finish a task and how frustrating it is. But I’ve gotten really good at living one-handed, right-handed – I don’t even think about it anymore.I think that this is probably a good place to be 15 years post-stroke, but I guess there’s always a little voice that wonders, “Did I become too comfortable, too soon?”

But it’s not as if a one-handed, weak-legged life, or disabled life in general, is without challenges, even after 15 years. I’m not sure that life will be truly “comfortable” for a long time, maybe ever. But is anyone’s life every truly comfortable? I don’t know. Everyone’s got their challenges.

15 years post-stroke…

…it’s good to be here. No question about that.

I’m working “out there” approximately half-time, and as of recently I can walk to work and back from where I’m working. I’m writing the rest of the time – I wrote a book of personal essays in 2007 (now out of print) about disability and being a stroke survivor that drastically needs an update, and I’ve started doing that.

I’d like to get more involved with disability advocacy work in my own community.

I’ve not been here nearly often enough, and I need to change that. After all, it’s an election year in the US, and 2016 is making 2012 look uneventful. There’s a lot that needs to be said.

15 years. Day-to-day it’s sometimes felt like it’s moved impossibly slowly. But over the long run – so quickly. It’s amazing, really.

 

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Happy Holidays

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

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I haven’t been here for a while.

And there’s been so much to write about! Since I last posted I’ve watched both a Republican and a Democratic Presidential debate. Donald Trump declared that if he becomes President, he’ll ban Muslims from America. Quebec’s laws on physician-assisted death changed. And this week themighty.com published (and later took down) a piece called “Meltdown Bingo” that offended both autistic and neurotypical disability advocates and prompted the creation of the #CrippingTheMighty hashtag on both Twitter and Facebook.

Read The Mighty’s apology for “Meltdown Bingo”

I’ve been working and trying to finish up another writing project, and I’ve been sick with a cold for 10 days. And, of course, I’ve been preparing to spend Christmas with my family, which now includes a new niece and nephew – 5-month-old twins, siblings to my now 4-year-old niece.

So I hope you’ll forgive me if, by way of a Christmas piece, I repost what I wrote last year.

Happy Holidays to you all. 🙂


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.

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My AVM Story: Back to Physiotherapy

I thought that it was probably time to post an update on the chronic pain that I’ve been having in my left leg (my weak leg) since last January. After an MRI showed that there was nothing in my thigh that should be causing any pain, and my GP admitted that she was stumped, we decided to do what we probably just should have done in the first place: have a physiotherapist investigate, and maybe do another round of outpatient physiotherapy.

Bar track walk apparatus in physiotherapy room.

Image Description: Bar track walk unit in physiotherapy room.

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Back to Physiotherapy

There are a number of physiotherapists in my town, but physiotherapy through the hospital is covered under the province’s medical program. There’s a waiting list, of course, but my leg wasn’t really bothering me at the time, so being on a list wasn’t a hardship. My name came up about a month ago for a block of appointments, and I’ve now been to three sessions.

Some background: I still fall every now and then, especially in winter when snow and ice make the sidewalks difficult to navigate. Generally, I’m much more likely to fall when I’m tired because my toe tends to drop on my weak leg and I’m not as careful about making sure that I lift my leg enough that it clears the ground. When my toe catches the ground, I pitch forward, and when I can’t right myself in time, I fall. Other stroke survivors will know what I’m talking about.

I don’t think much about it when I fall because I usually don’t hurt myself, I’m able to get up without assistance, and I just continue on. The people around me are much more upset than I am.

In fact, until my new PT started talking to me about falling during my first session with her, I had totally forgotten that last year, at New Year’s, I slipped on an icy patch in Dad’s driveway and fell. By moving my muscles and figuring out what hurt, she was able to figure out that it was likely this fall that had damaged my leg and that was causing the muscles to be so irritated now. She gave me some exercises to do at home and said that we’d talk more on my next visit.

The exercises helped, and she assigned some more the next week. But she had some other physiotherapy goals in me.

Surprise! I Learned in Physiotherapy that I Need to Learn How to Walk.

She had me do what she called “squat walks” on a bar track walk unit (see picture), so that I could support myself using my right hand. She wanted me to have both legs slightly bent at all times. And she wanted me to walk putting my left foot on the ground heel-to-toe, not trying to bring it out-and-around to avoid catching my toe.

Heel-to-toe is how non-strokies walk, apparently.

She told me later that I had a death grip on the rail during that first walking session, because squat-walks involve putting much more weight on my weak side than I’m used to. Apparently I don’t put much weight on my left side, even after 15 years, because my brain still tells me that my left side is unstable and that I will fall, even though my left side can take much more weight than I believe.

So I can actually walk in a much more of a balanced way. I’ve just never tried to do so, because my brain’s been telling me that I’ll fall (not that I’m conscious of this; I just try something, feel waaaaay too off-balance and stop).

During our next session, she added having me walk backwards, toe-to-heel. *This* was hard. I’d get my heel back and my toe on the ground…and instead of being able to put my heel flat on the group, like my PT instructed, my heel would turn out, away from my body, and I couldn’t get it to turn back. This has gotten easier, but it reminds me of the time in my post-stroke Saturday morning ballet class when I raised my left foot to do the demonstrated barre combination…and it just sat there, raised.  It was like I’d overloaded the neural pathways to the point where even moving wasn’t an option anymore.

My PT and I have talked about how rehab right after a stroke is about getting people minimally functional again. The people at Penetanguishene General Hospital were happy that I got any function back in my weak arm at all. They weren’t disappointed that they couldn’t get my hand to lay flat in the (brief, in the grand scale of things) time that I was there.  I walked out of Ottawa Rehab Centre using a straight cane, and people had done as much balance work with me as they could in the (again, relatively brief) time I was there, but we didn’t work on the finer things that we’ve talked about in this run of physio:

  • How people move their hips when they walk
  • How wide people place their feet when they walk
  • How people do everything involved with walking without looking at their feet to make sure that they’re doing it properly

There’s much more to walking than we think, and my PT said to me, “Babies do it all naturally. But when you’re older, you need to learn it all.”

A Thought About Stroke and Recovery Time Limits

I’ve never really thought, despite what I’ve read over the years, that there’s a concrete time cap on recovering function after a stroke.  My PT has confirmed that the period is much longer than anyone has previously thought, and that’s good to know. I’m fine with myself any way that I am.  But it’s nice to know that 1) My body and brain are capable of more than I thought of and 2) There are things that I can do at home, once this run of physio ends, to keep seeing how far I can get. There are even rails on the walls in my apartment building to use.

And hopefully my leg won’t give me the trouble that it did last winter.

General Notes

Work has been very busy lately so I haven’t been able to be here as much as I’d like. But here are some things that are in the hopper:

A blog on the inquest into Connor “LB” Sparrowhawk’s death.It’s important to me that I do a really good job on this one, so I’m taking my time and trying to think what the best way is to to talk about my feelings on this. But it is forthcoming.

Internalized Ableism Sparked by a discussion with reader Shannon Barnes, I’m trying to put together my thoughts about how damaging it can be when people that society is encouraged to regard as role models when it comes to disability advocacy have ableist attitudes…especially ones that insist on airing these attitudes publicly.

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