Lessons at Lunch

I caught up with a friend with an intellectual disability over lunch one day last week.chaz bono We hadn’t seen each other in a while, so we talked about a lot of things, among them the fact that she won’t be watching “Dancing With the Stars” next season. It’s one of her favourite television programs, but she’s upset about the way the judges have “teased” Chaz Bono for being overweight.

Chaz Bono and the Media

I’ve blogged here about “Dancing with the Stars” and the ignorant way the media’s treated Chaz’s decision to have gender reassignment surgery. http://www.girlwiththecane.com/bullies/ I don’t watch DWTS myself, but entertainment news filters through to me (usually). I think that Chaz Bono has handled himself with a great deal of class and dignity, being in the spotlight through the whole process and then going on DWTS despite public objection based on ridiculousness such as, “He’ll make our children want to change genders.”

I’m Not Perfect

I made two errors in talking to my friend about this: I assumed that she’d misunderstood the gender re-assignment issue, and I assumed that I knew more about what was going on in the show than she did (even though I haven’t been watching the show!) Actually, the judges have been denigrating Chaz Bono because of his weight:

http://abcnews.go.com/blogs/entertainment/2011/10/chaz-bono-dancing-with-the-stars-judges-treat-overweight-men-women-differently/.

But I, assuming that I knew more than her, I explained that they were really making fun of him because he used to be a girl. And boy, did I feel silly (and humbled) when I did some research and discovered how upset Chaz has really been about the names the judges have called him: Ewok, penguin, and basketball.

Lessons for a Monday

So, Lesson #1: Don’t make assumptions. I’m pretty good at not doing that in my work, but obviously sometimes I need a reminder.

My friend took the news that Chaz used to be a girl totally in stride. “They shouldn’t make fun of him for that, either,” she said. “They just shouldn’t be making fun of people for who they are.”

“You’re right,” I said. “It’s none of their business.”

“That’s right!” she said. “I hope that Cher sues them!”

Lesson #2: Accept people for who they are. Sometimes I think we all need a reminder.

It was a great lunch.

Happy Monday. :)

 

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New Series: Transition Planning

I’d like to do a series in the next little while on the importance of transition transition planningplanning within the education system for students with disabilities. Look for a post every now and then about this subject.

Transition Planning

Ideally transition planning should be going on whenever a student with disabilities is faced with the prospect of a major change in educational programming (starting at a new school, for example), and is especially important for children with disorders on the autism spectrum, who often don’t handle transitions well. However, I have the most experience with assisting students with intellectual disabilities and their families to prepare for the transition from high school to adulthood, so I’ll be focussing on that.

IEPs: An Introduction

In all of the Canadian provinces and territories, and across the United States, students that have a disability that causes them to need support or accommodation in school have that all documented in something called an Individualized Education Plan (IEP) in Ontario and the US. Many provinces also call it an IEP, although some provinces some call it by slightly different names (Special Education Plan, Individual(ized) Program Plan). These documents are different only in name and format from an IEP; they serve the same purpose and contain the same information.

The IEP lets school personnel know about what a student with disability requires to learn and function optimally in the classroom. Some students may need a laptop to take notes and longer to writer to write tests and exams. Other students may need to work on a modified curriculum is modified, and need the quiet of the Resource Room to do classwork. The IEP clearly spells out these needs. The IEP also makes them aware of any important medical information. For example If a student is prone to seizures and needs to have the ambulance called if they have more than one in a hour, this should appear in the IEP (as well as a Medic-Alert bracelet that the student wears, but that’s another story). Sometimes, if a student has a history of violent behaviour, a Safety Plan with specific instructions on how to handle this behaviour accompanies an IEP.

IEPs review happens once a year, and can happen more often should issues come up. The yearly meeting, referred to in Ontario as the IRPC (Internal Review and Placement Committee) is a place where parents can talk to their child’s teachers and other school administration about their child’s progress, and discuss changes that they’d like to make for next year. Students over 16 in Ontario are entitled to attend their own IRPC, and parents or the student can bring an advocate in. The IPRC is also is also an excellent opportunity to discuss another section of the IRPC: the Transition Plan section. The school should be assisting your son/daughter to develop a transition plan. Other agencies may be helping, but the school has a responsibility to do this. This is the same across Canada and the United States. School boards place a great deal of importance on transition planning and periodic review of the transition plan as it appears in the IEP.

The Importance of Good Transition Planning

Good transition planning is important. You and your student should be an active part of the process. to ensure that the school creates the best plan possible. After all, the plan is about your young adult and his/her life.

You don’t want to get to Graduation Day and be asking yourself, “What are we going to do now?

“Where is my daughter going to stay while I’m at work, now that she can’t go to school?“

“My son says he wants a job – how do I go about helping him to get one?”

“I know that I’m supposed to apply for some sort of government funding for my daughter, but how do I find out what it is and where I begin?”

“Where are we supposed to get a new doctor now that my son is 18 and the paediatrician won’t see him anymore?”

“My daughter says she wants to live alone, but I don’t think she’s ready, and I’m tired of fighting with her about it,”

Every one of those problems has solutions – but not on Graduation Day. Transition Planning has to start, much, much earlier. As we go through this series in the next couple of weeks, we’ll discuss why, and the best ways to partner with your school and community agencies to assist the young adult in your life to create the best plan possible.

More on IEPs: http://specialed.about.com/od/iep/a/IEP-Plan.htm  Note:  This is a very general resource.  It doesn’t mention transition planning or the transition plan section of the IEP.

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When a “Token” and an “Activist” Is the Same Thing

“Token” and “Activist”

Something that I wrote in a comment the other day got me thinking.

I’ve never felt awkward about being the only person with disabilities in a group, or the “token disabled person”, if you will). I credit this to my experiences with people with disabilities before the stroke, telling people that they had the right to try tokenwhatever they want, and to having a support system that really encouraged me the same way after I had my stroke. I’ve definitely been aware that I’ve been the only one in groups like writing circles, meetings, or my ballet class with a visible disability, but the disability is rarely my biggest worry. So I’d never really considered, until I commented on it earlier this week, that when someone with a visible disability is *the* person with a disability in an organized activity, they’re automatically an ambassador for the rest of us…whether they like it or not.  And if a person’s invisible disabilities are known to everyone in the group, and they’re the only one who has them, the same applies.

Automatic Activists

It’s a big responsibility, and not everyone asks for it. Sometimes people just want to go to an activity and enjoy it, without the pressure of having to represent everyone like them.

I don’t think that humans deliberately regard people like this. It’s not meant to be hurtful. I don’t think we’re even aware that we’re doing it most of the time, and I probably do it myself. Perhaps it’s one of those “short-cuts” that the brain uses to categorize people, much like stereotyping. I think that we’re certainly able to rise beyond a bad impression of one person and not generalize it to everyone else, if we choose.

I just think, for people struggling to come to terms with especially acquired disabilities, it can be another layer of learning to deal with large-group social interaction that we don’t necessarily anticipate. I didn’t come out of the hospital ready to embrace activism, through my words or my writing or by being the token disabled person in an activity. I just wanted to get back to a point where I was feeling well enough in my new life to get back to feeling like me.

Activist on My Own Terms

But I wasn’t “me” anymore, was I? I was “me” in a wheelchair…”me” with a cane…”me with a weak arm…but not the “me” who had gone into the hospital for surgery.

It took me a while to realize that the new version of me was okay. And then accepting everything that came along with it, and then celebrating it, was okay.

But I do understand why some people are never comfortable in activities where they are the token disabled person.

Can you think of other groups that might be uncomfortable when members are the “token member” in a group?

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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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