My Brain AVM Story: Left Side Neglect

I’m very lucky that, even though I still have some deficits on my left side I still have a relatively high degree of sensation on my left side. I still do have some left side neglect, however.

Left Side Neglect

left side neglect

Left side neglect is more common than right side neglect

When I was in early recovery stages, it was much worse. Apparently this generally stems from visual field impairment on the left side, which tests showed wasn’t really a problem for me.  But I *did* have a reduced sense of sensation on my left side at the time, and also had trouble telling where my left arm and leg was without looking at them, so I also I just didn’t account for my left side in my movements and activities. At worse, this meant half-walking into a door or winging my arm off a piece of furniture. More commonly, it meant walking around with my t-shirt half-hiked up my left side, until someone reminded me that I’d forgotten to pull it down over my jeans when I got dressed. It just wouldn’t occur to me to check to see if I was fully put-together on my left side before leaving my room.

Today I remember to check my shirt, and I don’t walk into door posts or furniture. However, my stroke left me with a slight slope to my left shoulder that has me constantly checking my left side. My bra strap slips off my left shoulder sometimes, and I don’t always catch it until it occurs to me to (subtly, I hope) feel my shoulder and see if it’s still there (and less subtly wrench it back onto my shoulder if it’s not). When I haven’t done up my jacket or cardigan (and I hate doing up buttons or zippers with one hand, so my jackets and cardigans are usually open) the left sleeve creeps from my shoulder down my arm as I walk, sometimes bunching at my elbow before I look over and realize what’s happening. Left side neglect.

<h3>Stoke-Brain Quirks</h3>

So, even with the high amount of function return that I have, lots of sensation on my left side, and no visual field impairment,  my brain still has its little stroke-brain quirks. All things considered, though, I can live with dealing with a bit of left side neglect. I can even deal with being teased about it – apparently my niece Gillian’s shirts sometimes slip off her shoulder a bit and my sister and her husband laugh at her “left side neglect”.

If left side neglect puts me in company with my adorable little niece, I’ll take it.

More on left side neglect: http://eskes.psychiatry.dal.ca/Files/WHAT_IS_NEGLECT.pdf

 

 

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Halloween Dance: Musings About Segregated Events

On Thursday I volunteered to accompany a group of people with intellectual disabilities to a Halloween dance in another town.

Segregated Events…*sigh

I’m not 100% sure whether this dance was marketed only to people with intellectual and/ordance physical disabilities and their support workers or whether the dance was open to the community at large.  There didn’t appear to be any people from the community at large at this dance, and I know from volunteering at  these sorts of dances in the past that the people who come do tend to be almost exclusively people with disabilities that are supported by agencies, and volunteers and/or staff who agree to attend as support. In other words, they’re segregated dances, and it’s left me with a somewhat bad taste in my mouth for quite some time  (much in the same way that the Special Olympics does).

Some of the people that attend these dances are terrific dancers. More importantly, a lot of them simply love to dance. Why aren’t we encouraging people with disabilities to attend community dances, and providing needed support for that to happen if necessary?

On the Other Hand…

I have an idea of the “whys” and “wherefores” for these questions. Sometimes staffing pressures don’t allow that kind of support, and it’s not always easy to get volunteers. And I know that for some of the people I’ve supported, I’d have concerns about them going unsupported to a community dance where alcohol was being served (although it’s certainly their option to do so). I worry enough about their safety as it is, given the research I’ve done into the higher rates of assault for people with disabilities – less than I would than if we were living in a big city, but I think it’s naïve for anyone to assume that violence can’t find them in a small town. Even with my cane, a loud voice, and a more than reasonable amount of force behind me (and no compunction about using all three to defend myself if I had to), I won’t go walking in my town past a certain point at night alone, and definitely not in certain areas.

I see why people like the segregated dances. They’re inter-community social events. They’re a chance for people to meet up with friends supported by other agencies. Sometimes, people from my community have found people that they knew from when they were institutionalized as children, teens, or young adults. It’s interesting to see people form new friendships and rekindle old ones.

Why Not Just Dance Together?

I think that the way I’d ideally de-segregate these dances is that I’d try to bring more of the community into the dances as they’re currently conducted. Because, seriously, I had a blast on Thursday night, and I think it was because it was the least judgemental place to dance that I’d ever been.  I wasn’t a very good dancer before my stroke, and I pretty much just flail now – but nobody cared. The woman with Down’s Syndrome who grabbed me for I-can’t-even-remember-what-song and tried to teach me to ballroom dance didn’t appear to care that the stubborn fingers on my left hand wouldn’t interlace with hers – she just grabbed my wrist, showed me where to put my other hand, and we laughed and laughed as she tried to get me to spin around the floor. No one cared if you liked to dance in a large group, a small group, or by yourself, or if you wanted to dance a slow dance with your opposite-sex partner or your best same-sex friend or just twirling on the floor by yourself. People danced in their wheelchairs, people sang loudly without letting a little thing like not knowing the words get in the way, and no one seemed to think a thing of it.

It was inspiring. There was a place for everybody.

It was humbling. I thought, “This is the way it’s supposed to be – and we ‘smart’ people are supposed to get it, but we don’t. It’s the people that we look down on that truly get it.”

Sometimes…I wonder how “smart” all of us “normal” people really are.

Happy Halloween!

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My Brain AVM Story: Therapy animals

I never realized until recently just how many kinds of animals work as therapy animals – dogs, horses…even elephants!

Therapy Animals at PGH

I was in stroke rehabilitation at Penetanguishene General Hospital for their annual summer barbecue, hosted by a benefactor at his large home. PGH is a very small facility, so it wasn’t a big deal to get everyone who wanted to go out to the large property for a day of fun and food and – pony rides.

The staff said that they’d get me up on the pony for a safe, guided ride if I wanted one. They really encouraged me to try riding the pony, in fact. I wasn’t having any of it. I couldn’t see how they’d get me onto the pony, and I had it in my head that I’d be too heavy for it anyway.

But perhaps I should have. Horses are very effective therapy animals. I’ve known for a long time now that some people with developmental disabilities such as autism and Down’s Syndrome experience significant functional gains from being in contact with horses – the process is called equine therapy.  Equine therapy is also used by psychotherapists, to help people get over eating disorders, anxiety disorders, and grief issues, and to manage conditions like ADD/ADHD. http://www.bearspotfarm.com/poniesatwork.pdf  Doing some investigating this week, I also learned that a part of equine therapy, referred to as therapeutic riding (or hippotherapy) actually helps people with physical disabilities due to brain injury, cerebral palsy, and stroke to recover balance and function.

And ponies *are* horses.  I googled that. And then I googled “equine therapy ponies” and found a place that’s a team of ponies which which they do equine therapy and hippotherapy http://www.equinetherapyassociates.com/index.html

Horses are amazing. Maybe I should have tried to go for a pony ride that day.

Therapy Animals at ORC

But I didn’t. Ottawa Rehabilitation Centre had a therapy animal program – they had a therapy dog that came in weekly, and I never missed his visit. He was an older dog, a little slow-moving. I can’t remember what his name was, or what breed he was. But he and his owner spent Thursday afternoons in the Rec room, where Arts and Crafts was held on Thursday nights, and we’d all file in and out as our schedules allowed. That dog would sit there and happily let you maul him as long as you wanted, and I saw him get smiles out of people that never smiled otherwise.

*My* Therapy Animals

There was a family in the area that had therapy dogs when I moved home, but I never met them – they worked pretty much in the hospital.  So I found my own therapy animals.

I loved being at home with our family dog, Sandy, but she was quite elderly. She died while I was living with Dad. I wasn’t able to get a dog when I moved out on my own.  My apartment building allows pets, but the winter conditions in the area made me very unsteady on my feet for the first couple of years. I couldn’t guarantee that I could walk a dog as much or for as long as it needed. So when I finally decided to get a pet, I got a kitten. Poor Paddington was ill and had to be put down not long after his first birthday. But Faira came to live me soon after, and then Mindee.

therapy animals

Faira and Mindee

I hadn’t had cats when I was growing up, and I can see now why they don’t make good therapy animals. Like most cats, Faira and Mindee only want affection on their own terms, and sometimes I think they see me as only food provider and main obstacle to completely taking over the bed. But, as I write this, Faira is purring on my lap, half-draped over my arm, and the two of them are (I’m sure) exhausted by the close tabs they kept on me while I had food poisoning last week (read: they both slept on the bed with me/on me/somehow touching at all times…they do this when I’m sick).

I consider them therapy animals, even if they’re not officially ones.  And, now that I know what trying to lift a sleeping cat *actually* feels like, I have a much greater appreciation for what my nurses told me trying to lift a limb affected by stroke is like.

Everything has a lesson to teach us, apparently.

 

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More on Michael Bloomberg and Accessible Taxis

Google delivered this to my inbox a few moments ago:

http://gothamist.com/2011/10/21/say_hello_to_the_mv-1_taxi_the_tlcs.php

I don’t know if it’s just me…I’m having an awfully hard time understanding what the new strategy is. It’s been made about as convoluted as it could possibly get.  Garth Johnson, the author of the article, attempts to sum to it up:

“Instead of just picking a wheelchair-accessible cab that would have been built in Brooklyn, the TLC picked one that isn’t which it will now try and maybe get retrofitted to be accessible at the same time adding yet another vehicle into the fleet and spending more money to create another version of the already-troubled Access-A-Ride program. Nope, still doesn’t make sense.”

Truer words never spoken, Mr. Johnson.

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Accessible Taxis (or Lack of, Mr. Bloomberg?) in New York City

The news just keeps throwing ‘em at us lately.  This time, the US Justice Department is suing New York City over its relative lack of accessible taxis, but NYC mayor Michael Bloomberg doesn’t see what the big deal is.

http://www.nydailynews.com/ny_local/2011/10/20/2011-10-20_bloomberg_rides_feds_hard_says_that_suit_to_add_handicappedaccessible_cabs_is_un.html

http://www.disabilityscoop.com/2011/10/24/accessible-taxis-mayor/14294/

Bloomberg Doesn’t Think Making All Taxis Accessible Will Workaccessible cab

In fact, he’s opposed to the idea of making all of the taxis accessible (despite the fact that it’s already been done in other cities, most notably in London, England) on the following grounds:

  1. Accessible taxis are more expensive to operate.
  2. The suspension is worse in accessible taxis than in typical cabs, so people might use them less.
  3. People are going to get hurt trying to get across the increased space between the back seat and divider in an accessible taxi, to pay the driver, increasing the risk of lawsuits.
  4. People in wheelchairs will find it too difficult to hail an accessible taxi from the street and get into it anyway.
The New York Post agrees, apparently:

Bloomberg’s proposed solution is to have the city’s 230 accessible taxis dispatched by phone to locations. A number of people who use wheelchairs or who have friends and/or family that use wheelchairs indicated in comments on the articles just why this wouldn’t be acceptable to them.

Bloomberg Evaluates “Needs” re: Taxis

I have multiple difficulties with all this, but the one that really got to me the most when I came across this story yesterday can be summed up in a single quote attributed to Bloomberg:

“It’s always somebody who says, ‘oh, no, everything has to be handicapped accessible, or wheelchair accessible,’ but that’s not necessarily what the people that are in wheelchairs need,”

I think that comment in particular ranks as one of the most ignorant about disabilities that I’ve ever heard. What in God’s name do they need then, Mr. Bloomberg? It’s not like it’s okay *sometimes* when things aren’t accessible, because on that day the paraplegic isn’t feeling so tired and might be able to manage a regular taxi…generally, when you’re in a wheelchair, you’re in there for a reason, and you don’t have the choice of saying, “I’ll just go non-accessible today.”  The thread running through a lot of the comments on the linked articles was that people wished that Mr. Bloomberg would spend a day or two in a wheelchair trying to get around New York City, to get an idea of what his constituents that use wheelchairs *really* need.

Accessible Taxis and Visitors

And not just constituents. New York thrives on tourism. If I was in a non-folding wheelchair and my main consideration about what city in which to vacation was ease with which I would be able to get around…frankly, from what I’ve heard, I’d probably go to London.  It’s an awesome city, just as exciting a place to visit as New York, and *all* the taxis are accessible.

Really, Mr. Bloomberg…could you blame me?

 

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Rest in Peace, Stuart Walker

The police aren’t ready to declare 28-year-old Stuart Walker’s death a hate crime, but the brutality of the murder has too much in common with Matthew Shepard’s death in 1998 to convince me otherwise.

Shepard, an openly gay student at the University of Wyoming, was tortured, pistol-whipped, tied to a fence, and left to die.  His murder was the reason that American anti-hate crime legislation was eventually extended to cover homosexuals.

Walker lived in Cumnock, Scotland.  His body was found on early Saturday morning, Scotland time. His injuries suggest that he was a was tied to a lamppost, beaten, and burned.

http://www.bbc.co.uk/news/uk-scotland-glasgow-west-15426893

Stuart Walker’s Death and Unpleasant Memories

I remember when where I was when I heard about Matthew Shepard. I was in university, in my room, listening to the radio. When the news came on, and I heard what had happened, I felt like throwing up.  I had friends who were gay. I was scared for them. I didn’t like that things like this happened in my world.

I felt the same way yesterday when I heard about Stuart Walker’s death on Twitter. I have friends who are gay. I know that there are teens and children in my community who are struggling with their sexuality – not by name, but I know they’re there…heck, I hung out with some kids that were struggling when *I* was in school, and I don’t imagine that the issues associated with being gay, lesbian or bisexual in a small town have gotten any less difficult to deal with since I graduated.

And while I’ve never supported any individuals with intellectual disabilities who have indicated that they were gay, lesbian or bisexual, but I’ve had delightful conversations with a few that are. The idea of  people who are already at risk in so many ways, having to live with the potential for even more stigma and violence just to be who they are…it’s frightening.

And it’s sickening. For anyone to have to hide who they are out of fear is downright sickening.

For anyone, whatever their sexual orientation, to have to die the way Stuart Walker did, is just…beyond-words-wrong.

I wish I knew what the answer to all this was.

Scotland, know that there are Canadians mourning with you.Stuart Walker

Rest in peace, Stuart Walker.

 

 

 

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Interview with Ricky Gervais, for those interested…

Ricky Gervais Defends Himself

I gather that Ricky Gervais has spoken to several people about the “mong” controversy, but Iricky gervais happened upon this interview with disability blogger Nicky Clark as I was looking around Twitter tonight. The interview itself is interesting…the comments, in my opinion, are even more so.

http://nickyclark.blogspot.com/2011/10/when-nicky-met-ricky.html

I tend to agree with what what Nick McGivney said in his comments – this interview was a good start, but it’s going to take more than this to undo the hurt that his words caused.

I’m skeptical about how genuine Ricky Gervais is actually being in this interview, but perhaps I’m being too cynical. I’d like to hear how other people feel about it.

 

 

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Ricky Gervais Returns to Twitter

So, Ricky Gervais returns to Twitter by mocking people with disabilities. This time it’s not “retard”, but “mong”.

For those who don’t know, “mong” has for decades been considered a shortened form ofricky gervais “Mongoloid”, which is what people with Down’s Syndrome used to be called. It’s an insulting, bullying term, along the same lines as “retard”.

But Ricky Gervais insists that he didn’t mean to be insulting to people with Down’s Syndrome when he used “mong” in a series of jokes on Twitter recently, among them “Good monging” , “Night night, monglets” and “Two mongs don’t make a right”.  Like other comedians who defend their use of “retard”, he claims that he was using “mong” to insult “dopey or ignorant” people.

The twitter pics of him in self-described “monged-up” poses with captions such as “My favourite drink is toilet” obviously weren’t meant to mock people with Down’s Syndrome either. *laying on the sarcasm very thickly*.  I find it difficult to understand why he’s surprised that advocacy groups are upset.

I’m going to link back to the very first post I wrote about this sort of this…about “political correctness” and “words just being words”…and reiterate that I’ll never call for any word to be banned.

But I do wish that people (this means you, Ricky Gervais) would be more responsible with what they put out there.

http://www.girlwiththecane.com/politically_correct/

By the way, Ricky Gervais…

I know this means nothing to you…but I stopped watching “30 Rock” after Tracey Morgan’s last stunt like this.  And I was getting bored with “The Office” anyway, so I really won’t find it difficult to cut it out of my Thursday night viewing. *shrugs*

Here’s another commentary on Ricky’s jokes, and his refusal to apologize, which I particularly like.

http://blogs.telegraph.co.uk/news/tomchiversscience/100112084/ricky-gervais-and-mong-if-its-politically-correct-to-think-its-bullying-then-im-politically-correct/

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Response from Philip Garber’s Professor

Just found this online.

http://www.nytimes.com/2011/10/14/nyregion/professor-of-philip-garber-nj-stutterer-defends-actions.html

It’s interesting to hear her side of it.

- Sarah

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Lessons from Philip Garber

A Facebook interaction last Thursday evening was…not my finest moment, advocacy-wise. It all centred around an article that I found and linked to about Philip Garber, Jr., a college student with a stutter who was asked by one of this professors not to speak in class.

http://www.nytimes.com/2011/10/11/education/11stutter.html?_r=1

“Your Speaking is Disruptive

Philip Garber’s “profound stutter” is not the only thing that makes him unique in his 2 classes per semester at the County College of Morris.  At 16, he’s in college when most of his peers are still in high school. Philip Garber’s education has been home-schooling and charter schools, and he says that he’s not experienced any discrimination because of his stuttering. In light of that, his History teacher’s suggestion that he not ask or answer questions in class so that he not “infringe on other students’

Philip Gerbertime” and the more blunt, “Your speaking is disruptive” surprised him.

Shocked, my original comment on the article was: “If I’d been his support worker, she would have been toast.”

Opinions

Then a dear friend who is a college professor weighed in. She said that she wondered why he was focusing on college so early instead of continuing with the speech therapy that he’d decided to leave a while ago.  I said that I could see her point – why would Philip Garber put himself in such a high-pressure setting, that presumably would make his study worse, when there was plenty of time for college?

Another friend who knew better than both of us came along and pointed out that speech therapy doesn’t work for everybody, and that stress or nerves don’t always affect stuttering.  And another friend that I totally wouldn’t have expected to be on Philip’s side posted in emphatic support of disciplining the teacher for how she’d handled the situation.

Philip Garber and Person-Centred Support

I thought about Philip Garber and that article a lot last Friday.  While I could see my professor friend’s points, something about the way I’d responded was really bothering me, and it took me a while to figure out what it was. While Philip wouldn’t be a person that I’d normally support in my line of work, I’ve certainly worked with teens with intellectual disabilities that have *wanted* to go to college or university. One young man with a mild disability had his heart set on Bible college. I had my doubts about whether he could handle it, as did the high school that he attended. But we used the brief time that I was available to support him to go through the application process, and I heard later that they’d accepted him. I assume that they did so expecting that they’d be able to meet his needs, as we’d made them clear in the application.

And that’s when I figured out what was bothering me. I’d forgotten about being person-centred, as a support worker. If I’d been a support worker for this 16-year-old young man (for anyone, really), being  person-centred  always makes it very simple: “You don’t want to do speech therapy anymore? Let’s talk to your parents about why you don’t want to do it and see if we can come to some sort of compromise. And if you want to take college courses…let’s see what it would take for you to get in.  It’s up to you.”

And I’d forgotten about good advocacy. Philip Garber obviously has the academic credentials to be at County College of Morris, or the school wouldn’t be letting him take courses there. Whether he’s paying to go himself or there on some sort of scholarship, his tuition is being paid. He’s a student at the school, and as a student at the school with a disability, he’s entitled to accommodation – not an attitude of “I’d rather not deal with your disability, so don’t talk.”

She *would* have been toast. As his support worker, I’d have made sure of it.

What Do You Think?

I don’t think I’m really forgetting these things…maybe just need to get back into the swing of things. More volunteering, perhaps, now that school’s over.

By the way, here’s a link to Philip Garber talking on YouTube…decide for yourself how “disruptive” his speaking would be if he answered questions in a school environment.

http://www.youtube.com/watch?v=4E6k_Z9eM4M&feature=related

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