“Differently Abled”

I’ve never been crazy about the phrase “differently abled”. I remember first hearing it

differently abled

More commonalities than differences

when I went away to university, in a school sponsored disability-awareness program, and it always struck me as…trying too hard. I think that I don’t really like it now because it emphasizes the differences between people with disabilities and non-disabled people, more than the similarities.

“Differently Abled” and “It’s All Relative”

I’m not the only one who feels this way, I’ve noticed. I recently read an article by a man who said that he wished that we’d do away with the practice of having non-disabled people spend a day in a wheelchair or otherwise spend time “experiencing” what a person with a person with a disability does (like going blindfolded for a period of time). He says it just emphasizes what people with disabilities *can’t* do, rather than what they can do. Being “differently abled” still means “different”.

But I wrote the phrase “it’s all relative” while replying to a comment yesterday, after having it in my head in the last couple of days, and yesterday I began to think about what it really meant. For instance, I’ve been lamenting the fact that one of my cats is getting a bit…hefty. Especially if compare her to a hamster. But compared to a cow, she’s very light.

And while I may put on my bra strangely compared to women with two hands, my friend on Facebook who broke her hand and had no idea how she was going to get dressed for work told me that I was a lifesaver when I told her how I did it.

Not So Different from You

That wasn’t so long ago…maybe two years. But it was the closest I’ve come to seeing “differently abled” as something accurate and half-way positive. I have a different skill set than people who use two hands do to do daily activities, yes.

But I still do the same activities as able-bodied people. I buy groceries and make food and make my bed and clean my apartment and do my laundry…I’ve gone hiking through the forest and downhill skiing (using something they call a sit-ski) and dancing and travelling on my own…

I think that people with disabilities can choose to look at their “difference” from others as absolute or relative, and that the people who look at it as relative tend to have a more positive view of living life with disabilities.

I may be “differently abled”, but I’m not so different from the rest of you. Really.

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My Brain AVM Story: Daylight Savings Time and Stubborn Me

It’s now Daylight Savings Time, which used to mean a couple of things in my world:daylight savings time

  • It was dark…so much more earlier.
  • Snow was near. I hate snow.
  • I could count on that nagging  “a little blue” feeling getting exponentially worse.
I don’t have so much of a problem with Daylight Savings Time now, mood-wise. I think that my moods will always be connected to the seasons and the amount of sunlight that I get, but I know better now how to prepare for less sunlight and compensate for it. I don’t feel like my world is ending when I turn my clocks back.
And, of course, I just don’t turn one of my clocks back.

Daylight Savings Time: A Two-Hand Job

If you’ve never tried to take a wall clock down, turn it back, and put it back up…it’s a two-hand job. Especially if it hangs off a little nail in the wall that recedes into the wall if you don’t put the clock back – *just so*. I grew frustrated of dealing with this twice a year and just stopped changing my clock.
There are plenty of people that I could ask to help me turn back the wall clock  for Daylight Savings time, and to move it forward again in the Spring. But I don’t, and I’m really not sure why. Usually, a visitor gets sick of having to subtract the extra hour that I get used to doing without thinking and asks if they can change it for me.  But some years I’ve gone straight through Daylight Savings Time to the spring, when the clocks spring forward again, and thought, “Cool, the clock is going to be right again.”
I think that this is definitely an example of a time when I need the “Confront me if I don’t ask for help” sign. With the amount of people out there who are willing to help me, there is no reason why my clock should be wrong for half the year.
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The New York State Group Homes Situation

I found an awesome commentary on the New York Time’s “Abused and Used” series that I thinkNew York State group homes should be required reading for everyone. I think that you can get the message without having read the articles, but for those who like a bit of backstory: The “Abused and Used” series examines a review that the New York Times did on some previously unreleased data about the mortality rates in New York State group homes for people with intellectual disabilities. The Times found that in the last decade, 1200 deaths have in state and privately-run New York State group homes have been attributed to unnatural or unknown causes – that’s 1 in 6. And that number is the start of a story of abuse reports, poorly-trained workers, lack of safety protocols (and little or no review of safety protocols when a death happens) and little accountability for residents’ safety in New York State group homes that just made me feel sick.

http://www.nytimes.com/2011/11/06/nyregion/at-state-homes-simple-tasks-and-fatal-results.html?_r=2&pagewanted=1

What the New York State Group Homes Situation Tells Us

There’s obviously something in our society that’s still very apathetic toward people with disabilities, or the situation in New York State group homes would not have happened – some governing body would have seen what was happening and snapped to attention long before it got to this point. I like Zoe Wool’s take on it (this is the required reading I was talking about earlier):

http://savageminds.org/2011/11/06/valuing-life-death-and-disability-sorting-people-in-the-new-york-times/comment-page-1/#comment-708957

The problem is (and the family of  one the residents who died also said this; see link to article in the first section) is that we don’t value people with disabilities in our society. Wool suggests it’s because we value people with disabilities relative to what kind of contribution they make (or made), rather than on their inherent personhood, to the point it determines how we speak about them.

Or whether we try to assist them to have a life or,  just try to keep them alive.

That sort of difference shouldn’t exist. Everyone with a disability should have access to the resources that they need to not only live safely and with dignity, but to have equal access to the community and opportunities to build the life that they desire that people without disabilities do. We don’t need further inequality lines within the disability community itself.

What to Do?

This is why we have to whole-heartedly support efforts by people such as Nicky Clark to stomp out disability hate speech. Because when you can call people with disabilities disgusting names, it’s not that much further to believing it’s okay to do things like slack off on those boring, inconvenient little things that you have to do in your job to keep them safe (like make sure food is cut up small enough so they won’t choke and then actually stick around to see that they don’t choke while they’re eating; see link to article in the first section), and just a bit further to justifying withholding food. I don’t know how people get to the point where they physically and/or sexually abuse residents, but apparently plenty of both was going on as well, rarely reported to police, and dealt with internally by moving the abusing staff to another home where they would abuse again.

http://www.nytimes.com/2011/03/13/nyregion/13homes.html?pagewanted=1

And I don’t know why people like this even want to work in group homes, or how they get past the interview process, but obviously in the New York State group homes a whole lot of them did…and now we’re seeing what happens when they get shuffled from house to house instead of fired and when the system doesn’t have enough safeguards to make sure the damage they do doesn’t happen again.

It makes me wonder how many other states this sort of thing is happening in… :(

Archive of the “Abused and Used” series about New York State group homes:

http://www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html?src=tp

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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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