“The Fundamentals of Caring”: Movie Review

So, this past weekend I watched “The Fundamentals of Caring” on Netflix, with more than a little trepidation (even though one of the stars is Paul Rudd, one of my favourite actors.)  This post contains major spoilers for that movie, so considered yourself warned.

Content Note: Ableism, Internalized Ableim, Cripping Up, Stereotypes, Caregiver Issues

"Fundamentals of Caring" movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. "The Fundamentals of Caring" is written just above them in dark green. All against a light green background.

Image Description: “Fundamentals of Caring” movie post: Dark-haired man in a green sweater, hands shoved in his pockets, stands back-to-back with a young woman with long, dark hair in a dark orange jacket. A young man in a wheelchair with curly dark hair, wearing a brown jacket and pants and a green scarf sits between them. “The Fundamentals of Caring” is written just above them in dark green. All against a light green background.

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I say I watched this movie “with more than a little trepidation” because Hollywood doesn’t tend to “get it” when it comes to movies about disabled people, and because The Guardian’s review of “The Fundamentals of Caring” savaged the movie – not specifically because of its portrayal of a disabled person, but because the film is conceptually tired and very predictable: quirky people bonding/learning about themselves/breaking out of maladaptive patterns and transforming their lives on some journey that involves a a road trip at some point, a la films like “Little Miss Sunshine” and “Garden State” (both, like “The Fundamentals of Caring”, films that debuted at Sundance.) It’s a dying genre, the review notes, and the films that currently represent it either have to have a lot of star power to get going, or leads with great chemistry (which Rudd and actor Craig Roberts, who plays disabled Trevor, have in spades).

The Guardian is right about these things. “The Fundamentals of Caring” is basically predictable, at least in some ways. I really liked “Little Miss Sunshine” (I don’t remember a lot about “Garden State”…Zack Braff, I think?) so I could live with the “life-changing road trip” trope. I actually liked the way it was used in “The Fundamentals of Caring”. But what I liked even better was the way that the movie dared to show a person (a young adult – Trevor has advanced Duchenne muscular dystrophy, uses a wheelchair, and requires a significant amount of assistance with activities of daily living) who’s really just an asshole. Not an irredeemable asshole, but the sort of smug, late-teen smart ass who thinks that faking that he’s choking on a bite of Slim Jim and scaring the shit out of his caregiver is hilarious. And it also dared to show a relationship where when the disabled person is an asshole, someone calls him on it.

That’s just refreshing. Because, despite what we’re told by movies and television and writing that calls disabled people angels and implies that they’re perpetually happy and joyous and “incapable of deception” (direct quote from a person in my town about a person with Down Syndrome), some disabled people are miserable to be around, and disability does not give them a free pass when it comes to treating other people miserably.

Let’s take this example between Trevor and and his new caregiver Ben (Rudd), where Trevor is deliberately trying to get under Ben’s skin.

Trevor: Who do you think would win in a fight to the death? Me? Or a bird?

(Ben stares at the TV, looking pained)

Trevor: How about me versus a lot of birds, but all the birds had muscular dystrophy?

Ben: I think a bunch of birds with muscular dystrophy are fucking you up.

We don’t expect disabled people to be assholes. We don’t expect non-disabled people in particular to dare to actually say something about it (because disabled people have it so hard already that non-disabled people should just overlook it if they’re impolite or mean, right?) The subversion of the expectations is both jarring and humourous, and carried out very nicely by Rudd and Roberts.

Not that “The Fundamentals of Caring” doesn’t have flaws besides being predictable.

Some Issues With “The Fundamentals of Caring”

Craig Roberts isn’t disabled, which sticks in the craw of most disability advocates (and rightly so). If you’ve never heard this argument and can’t see why this is upsetting, consider how offensive society would find it if a black character was played by a white actor in blackface, as Dr. Frances Ryan wrote in The Guardian after actor Eddie Redmayne won the Golden  Globe for his portrayal of Dr. Stephen Hawking in “The Theory of Everything”. Leading roles in movies are already at a premium for talented disabled actors, and they can’t even get them when they come along. It’s a much bigger issue than people think, and it gets barely any attention in the mainstream media. If you doubt me, think about the major movies featuring disabled characters, think about the actors who played the characters, and think about the awards they got:

  1. “Rainman” – Dustin Hoffman gets Best Actor Oscar for portrayal of autistic man
  2. “My Left Foot” – Daniel Day Lewis gets Best Actor Oscar for portrayal of man with cerebral palsy
  3. “A Beautiful Mind” – Russell Crowe gets Best Actor Golden Globe for portrayal of John Nash, a schizophrenic professor and economic theorist.
  4. “The Theory of Everything” – Eddie Redmayne gets Best Actor Golden Globe for portrayal of Stephen Hawking
  5. “Ray” – Jamie Foxx gets Best Actor Oscar for portrayal of Ray Charles

So, this is an issue.

Other issues include Ben’s caregiver technique. Granted, I don’t know the standards for lifts and transfers in the US.  But I was taught that safely lifting even a older child, say,  from a bed to another surface requires either two people or a mechanical lift, or you’re risking dropping the individual on the short term and back damage on the long term. It’s not totally clear what Trevor’s age is meant to be, but he doesn’t attend school, so presumably he’s at least 18 and fully grown – Ben should not be lifting him alone. Picky point? Maybe. But I wouldn’t want to be a wheelchair user in trouble somewhere and have someone assume that it’s okay to try to lift me unassisted because he or she saw it done easily in a movie.  It’s not safe.

Nor would I want people assuming that the solution to an accessibility issue is to have people push/pull a disabled person in their electric wheelchair up a flight of stairs.  That is absolutely not something to be modeled for comedic value.

And there were plot points that made me :headdesk:. We learn, once Ben approaches Trevor’s mother with the idea about the road trip to see the World’s Deepest Pit, that Trevor has never been more than an hour from his house. I truly almost cried.

But then I thought, “What a discussion-generator!”

Discussion Questions for “The Fundamentals of Caring

I don’t know if the people involved in “The Fundamentals of Caring” intended to pack it as chock-full of jumping off points for discussion as they did, but here are the ones that occurred to me as I watched:

  • Name some media stereotypes of disabled people in this movie, and some stereotypes of disabled people generally. How does Ben react to these stereotypes? The hitchhikers? Trevor’s family? Other characters?
  • Comment on Trevor’s mother. Is she ableist? Does she realize it? Why can’t she see that she’s ableist, or why does she continue to act in an ableist manner if she can see it?
  • Are there other ableist characters or examples of ableism in the movie? Is is deliberate?
  • Does Trevor have some internalized ableism? Why or why not? If so, what contributed to it? What contributed the most to it?
  • Comment on Trevor and the idea of dignity of risk. Who was the most scared of the idea of Trevor going on a road trip? Why do you think that was?
  • Comment on Trevor and the idea of self-determination. Even though it’s hard to deny that the trip would be good for Trevor, should he have been forced to go when he was obviously so uncomfortable with the idea?
  • Is Ben a good caregiver? Is the relationship appropriate?
  • What is the role of a professional caregiver?
  • How much training should professional caregivers have? What they should be paid per hour?
  • Should businesses that aren’t accessible be penalized in some way?
  • Is Trevor a positive portrayal of a disabled person? Why or why not?
  • Why do you suppose the title of the movie was changed from the that of the novel it was based on (“The Revised Fundamentals of Caregiving”)?

And, of course, you need not ask or answer any of these questions. If you can get past the genre (which apparently The Guardian couldn’t),  “The Fundamentals of Caring” is quite enjoyable. I was surprised at how genuinely funny I found it, how few moments of disability-related-“Oh my God that’s SO WRONG” moments there were, and how many times I went “Oh! Teachable moment!”

I enjoyed it more than I’ve enjoyed a movie about disability for quite some time.

“The Fundamentals of Caring” is currently streaming on Netflix.

Addendum: After reading this interview with the film’s writer-director, I’m amazed that “The Fundamentals of Caring” turned out as well as it did. Rob Burnett most emphatically doesn’t “get it”.

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The Problem with “Grace”

Some of you may have seen David M. Perry’s recent article in “The Atlantic” that analyzes the disability stereotypes in “Grace”, the anti-Trump ad produced by the Priorities USA Super PAC for Hillary Clinton’s campaign. It’s a terrific article about how even when advocacy has the best of intentions, it can backfire.

Content Note: Election 2016, Hilary Clinton, Infantilization, Exploitation, Nothing for Us Without Us, Racism

The words Election 2016 in blue over the waving flag of the United States. Keyword: Grace

Image Description: The words Election 2016 in blue over the waving flag of the United States.

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I’ve been watching reactions to “Grace”. Non-disabled people see “Grace” as a slam-dunk, a powerhouse of an ad that’s going to go a long way toward hurting Trump:

The disability activists that Perry interviewed, all disabled themselves, weren’t so impressed with “Grace”:

Dominick Evans, Filmmaker: “It feels really exploitative to use this issue and speak about a disabled child and about disability and never include us in the discussion, at all.”

Alice Wong, Founder of the Disability Visibility Project and #CripTheVote: “…infantilization is [the] message that comes across in this ad. Unfortunately, infantilization of disabled adults is pretty commonplace in the media.”

Vilissa Thompson, Founder of Ramp Your Voice: “Disabled children’s images and stories are always used to evoke the sympathy feels among members in society.” She added that the images are almost always of white children.

Perry observes

“No matter how well intentioned campaigns may be, they may take a different approach than activists, even when they are working hard to court those groups. Activists want to move mainstream society to adopt new positions. Campaigns, and ad-makers at political-action groups, want to reach mainstream Americans where they are. Perhaps social change always requires activists to push politicians past their comfort zones.”

I don’t disagree with anything in the article. I added it to the Facebook page and have tweeted it several times precisely because I think it’s spot on. But I wanted to add some observations of my own about about “Grace”, based on watching Obama’s attitude toward disabled people.

I think that Thompson’s argument about disabled children being used to manipulate emotions also applies to disabled adults – and that the Democrats as a group tend to use disabled adults for this purpose more than the Republicans do. I first noticed it at the 2012 Democratic Convention, when Gabby Giffords recited the Pledge of Allegiance.

Of course, it was more than Gabby Giffords’ disabilities that made that moment emotionally charged. It was one of her few public appearances since she was shot in 2011 (presumably an assassination attempt.) But did it help that a person that, through hope, hard work and a belief in herself (which is the way everyone succeeds in America, yes?) had “overcome” the disabilities acquired through a senseless shooting to the point where she could join her peers and colleagues during this history-making event, recited the Pledge of Allegiance, so central to both the history, present and future of everyone was there to do, in front of all of them?

You bet it did.

Making Us “Feel All the Feels”

I wrote at the time, in Gabby Giffords and Emotional Manipulation by the Democrats:

I didn’t see Gabby Giffords recite the Pledge of Allegiance, but the clip that I saw and the activity on my Twitter feed told me that people were certainly affected by it. People talked about her strength, her bravery, and how they were crying.

And even I had to admit that it was nice to see Gabby Giffords if for nothing else to see how far she’d come in her recovery. But I also wrote in my piece:

“If you really want to honour people like Gabby Giffords, who have the will to live as full a life as possible with disability (and there are many of us), put policies in place that allow us to, and that allow the people who care about us to assist us to. For all disabilities.”

I was thinking this way as well the second time I saw Obama trot out a disabled person to ramp up the emotional intensity, during the State of the Union address in 2014. Corey Remsberg was a veteran who’d done 10 tours of duty in Afghanistan – he certainly deserved the recognition that he got during the address, even if the way that Obama told his story reeked of inspiration porn (“Cory Remsburg never gives up, and he does not quit,” said Obama to the crowd of the way Remsburg regained his ability to walk and talk during 16 months in a rehabilitation centre after nearly being killed by a roadside bomb in Kandahar.)  I was even more angered by this display than I was by the one involving Gabby Giffords, because it was stunningly hypocritical. The US (and Canada, for that matter) loves to talk about how it supports its troops and takes care of them when they return from war, but we all know it’s not true – disabled US veterans are at the mercy of a VA system that isn’t even fully computerized, despite Obama identifying that as a priority for his administration, long wait times for services, and an uncertain future at the hands of the country that they put their lives on the line to protect.

It was one of the many reasons that I was disillusioned with that particular State of the Union address.

Oh, “Grace”…Call Me Cynical, But…

So, even hearing this time around from the Democrats that they’re considering disabled people in their campaign strategy, to the point when Hillary Clinton has even developed a plan to address the needs of autistic people and their families, I am skeptical, when I see ads like “Grace”, that they really “get it”. Disabled people are citizens and voters – I’m tired of us being used as props to rally the rest of the voting public. It doesn’t seem like politicians can get it through their heads (although through efforts like #CriptheVote I think that they’re starting to get it and will continue to see more clearly) that we’re a major voting demographic with *a lot* of power.

But we’re going to have to tell them when they don’t get it right.

Refuse to be a prop, American friends. You’re more than that, and people need to know it.

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On an unrelated note, as of June 11 I’ve been blogging for 5 years.

Thanks to all you for sticking this out with me. 🙂

 

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Hallee Sorenson is Autistic. Please Send her Birthday Cards.

So a picture is making the social media rounds this week of a young autistic woman, Hallee Sorenson, eating cake alone  on her 18th birthday. I’m not going to repost it because I suspect that  it was posted and has made the rounds through the media without her permission. But the photo went viral because Hallee invited her class and other teens in the community to a bowling party to celebrate her birthday, and no one showed up.  No one even sent an RSVP.

Content Note: Ableism, rudeness

"Autism" in brightly coloured block letters against a black background. Keyword: Hallee Sorenson

Image Description: “Autism” in brightly coloured block letters against a black background.

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There’s no disputing that it’s a sad story. The same thing happened to the daughter of a good friend of mine when she turned twelve. I wasn’t at the party, but when I heard about it I was furious. Livid. Growing up in my house, when we got invited to a kid’s birthday party and there weren’t prior plans for that day, we went – we’d been invited, and it was polite to go.  Even if we didn’t like the kid that much, we were expected to suck it up, because it was only a couple of hours and at least there would be cake and ice cream. However, the parties where the whole class was invited were done by the time I was ten, making way for small-group sleepovers and movie parties and eventually the more adult parties of high school. But we’ll get to that later.

I was not so livid about the failed birthday party that my friend’s kid experienced that I posted on Facebook about it and solicited cards to make her feel better. That never even occurred to me. But it did to Hallee Sorenson’s cousin Rebecca, who posted this, along with the picture of Hallee at her birthday party, on her Facebook page:

“Hallee is an amazing person-a person I am proud to be related to. She is also a person who just happens to have Autism. She has never let that small detail define who she is as a person-which is why I refuse to use it as something to describe her.

“She had been so excited to have a party with her friends. She wanted to go bowling, have fun, and eat cake and Ice Cream. Invitations went out to her classmates at school and to other friends in the area. Hallee sat at her party anxiously waiting for her friends to arrive so they could have fun….but Hallee’s friends would never arrive. Not a single one. Below is the picture of her celebrating alone – eating her birthday cake. My cousin is a beautiful young woman who will always have the mind of a child…so as you can imagine, she was heartbroken and beyond sad. She was hurt…”

Rebecca also wrote that Hallee “loves getting mail- this would be the best birthday gift she could ask for. If you could find it in your heart to take a few mins out of your day and send her a card, I would be forever greatful,” She included Hallee Sorenson’s mailing address.

Transcript

Hallee’s Mother: Hallee is a sweetheart. She is a people-pleaser, she’s affectionate, she’s empathetic, she’s sympathetic, she loves everybody, she, um, has never met a stranger, everybody is a friend. We’d planned, um, a couple of months in advance for her friends at school to come. She asked for a bowling birthday, that’s the party that she asked for, so we went all out and we didn’t get a single RSVP. But I wasn’t super alarmed about that because the year previously we didn’t get any either and yet everybody showed up. But the day came and we got everything ready and nobody came, nobody called, nobody showed up. My sister had been texting me from Texas saying, you know, “How’s the party? How come there are no pictures yet?” and I stood behind a pillar, I was crying so hard I just couldn’t even talk, and I took the picture and I said, “There’s nobody here.” And she and her husband were driving and they had to pull over. They were both crying. It was terrible, and what do you do? You just feel devastated. It’s- it’s – autism is a super lonely condition, not just for the person who has it, but for their family, because there are so many things that we can’t do. We can’t go to a movie. We can’t go to a family reunion. When these kids finally want to do something that’s typical, um, you go all out, and to have nobody show, well, it’s – it’s absolutely devastating.

She (Hallee’s cousin) said, you know “Hey!” you know,  “I’m going to try and get some cards for Hallee” and then she shared it on her own personal page thinking, you know, friends would pitch in, and it just took right off the charts. It went from page to page and started jumping by the thousands. We’ve got people from Vietnam that have contacted us that want to send her cards, and churches and schools all over the UK, Scotland England. It’s amazing. I mean, how do you respond to something like this? They just want this kid to smile on her birthday. I mean, how do you say thank you enough for that? We are just so grateful. So grateful. And it’s so exciting for her. And I think that people are, you know, um, ready for something happy. People want to do something good  for somebody, and this fits that bill, and they’re going to do whatever they can to make sure she’s happy, and that’s the best feeling

Hallee: Friends would write me so that they can good, celebrate me. And they can be good friends and love me so much. And wish me happy birthday. And best friends in the world. Okay?

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I’ve discussed this story with a variety of people, and read many comments on the media coverage. The disabled people that I’ve seen comment on it have almost always reacted negatively, for a variety of reasons, and are talking about it mainly amongst themselves. I don’t see their comments on the media accounts, and there may be a good reason for that: when I see anyone’s public comments deviate from the narrative that soliciting cards from strangers over the internet to help lonely, autistic Hallee Sorenson feel loved and valued, they’re attacked.

“Congratulations. You’re a horrible person.” someone said in response to a comment suggesting that brought up some of the issues that disability advocates are raising.

Brace yourself, folks. I’m about to show what a horrible person I am.

Hallee Sorenson’s Party

Even though Hallee Sorenson may “always have the mind of a child”  (I could do an entire blog post on how unfair it is to assume what developmentally disabled people do/don’t understand and the dangers of treating them as “eternal children” on that basis, but I’m going to just note that these are issues and move on), she was legally an adult at 18. She should have had the opportunity to plan her own birthday party to the greatest extent possible. Apparently she did say that she wanted a bowling party, but then, in her own mother’s words (see video), “we went all out.”

What does that mean?

Who made the guest list for this party? If Hallee Sorenson was the one who said, “I want to invite my classmates and these other teenagers for bowling and cake,” someone should have said to her, “You can do that. Your choice. But 18-year-olds usually don’t go to cake and ice cream parties, and not everyone likes bowling. The people that you want to come may not come.” When my friends and I were eighteen, we had part-time jobs, family obligations, and homework to do during the day on the weekend so that we could go out on Saturday night and do more homework on Sunday night. I would have sent an RSVP to Hallee’s party if my my 18-year-old self had been invited, and I would have asked her about it on Monday when I saw her at school.  But would I have gone? Probably not.

Unless she was a friend with whom I habitually spent time and not just an acquaintance. But was the guest list actually made up of Hallee’s friends? Or was the goal to get as many people there as possible? Was that goal Hallee Sorenson’s or her mother’s?

Either way, Hallee Sorenson ended up with a party that eighteen-year-olds weren’t likely to attend – regardless of her disability, the party was somewhat set up to fail. But we’ve all experienced disappointment (even six-year-olds, if we must go with the idea that she’s processing events at that level of cognition), and it’s important that everyone learn to deal with disappointment and realize that life goes on. I had a shitty twentieth birthday. I didn’t get a story on CBS. I survived.

But I wasn’t disabled at the time.

Because Hallee Sorenson Is Disabled…

…it was okay to take an embarrassing story of how no one came to her birthday party and put it up Facebook, along with her photo and mailing address, without her permission.

It was okay for media outlets to pick up the story, use images of Hallee Sorenson (without her permission, it seems), and talk to everyone but her about how she felt about the birthday party.

Cards and presents from strangers are seen as an acceptable substitute for the validation that Hallee would get from real relationships with her peers.

Don’t get me wrong. I don’t doubt that Hallee Sorenson’s cousin had totally good intentions when she asked the world to send birthday cards. And what parent wouldn’t want to do something, anything, to erase the memory of a birthday party where no one showed up? But how would any of us feel if we found out that we got a mountain of birthday cards because a family member put up a Facebook post asking strangers to send them and the news picked up on it?

“She’s going to see that a lot of people want to be her friend and want to wish her well,” her cousin told CBS in a phone interview.

I totally wish Hallee Sorenson well, but I’m not sending a card. I’m sure that she’s a lovely young woman, but I’m not her friend, and me sending her a card doesn’t make me her friend.  Me sending her a card does not mean that I’ll do “friend” things like visit her or call her on the phone, that we’ll get together to do things that we find fun, that we’ll be there to talk to each other when things get rough. It doesn’t even mean that she’d get a card from me next year when this story is long gone from the public consciousness and people have forgotten it was in June that they saw the sad story about the “heartbroken” autistic girl in Bangor  and sent a card so that *they* would feel a little less sad about what happened to her.  The idea of her getting thousands of cards believing that these people will be her friends makes me feel sadder than the idea of of people not showing up for her birthday. It was shitty of them not to RSVP and say that they were going to do it, but at least it was honest – if they’d wanted to be there, they would have come.

This card business is just a deception. No one would even have thought to perpetuate it on a non-disabled person because of all the liberties that they took with her image and her information (and shame on the media for going along with it). And what has been in the almost-year since Hallee Sorenson’s birthday to get to real issue of why people didn’t come to the party? Was it simply that the party was too much for children? Did they pick a bad weekend? Or was it deeper? Was Hallee having trouble with her peers? Did she need some social skills coaching?

Or were her social skills fine, but she needed to get better friends? Like, ones that would actually care about her enough to come to her birthday party, or at least enough to tell her why they couldn’t?

A friend of mine who *is* going to send a card said, “I just feel sad for her.” I do too. Hallee Sorenson didn’t ask for any of this – not the birthday party where no one showed up, or anything after.

Hallee Sorenson’s family is celebrating her birthday with a private family party this year. I hope that she enjoys it, and wish her many happy birthdays to come.

 

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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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