100 posts!

This is the 100th post to this blog. :)

And we’ve had two guest bloggers, so this makes this my 98th post.

I can’t believe that GirlWithTheCane already has 100 posts. Thank you to everyone who finds time in their day to read what I write here.

I’m having a lot of fun with this, so I plan to keep going for as long as I can…with 3 to 5 posts a week. I’m going to keep the focus on disability and disability issues as much as possible, but I may comment on some other social justice issues from time to time.

I also need to work on find a WordPress theme that will  me to make this website more accessible. That’s a priority.

If you have other suggestions, please let me know!

Thanks again for reading.

– Sarah

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Another Way of Looking at Group Home Closures

Group homes for adults with intellectual disabilities are closing across Canada and the group homesUnited States as a cost-cutting measure for agencies. For some families, losing group home support has already thrown them into a caregiving crisis as they adjust to having a family member who previously lived in a group home at home. But some of these crises are also opportunities for individuals, and families and agencies need to fight to make sure that governments see that and provide adequate support for individuals who have moved into other living arrangements. Because it was the assumption that people with intellectual disabilities couldn’t live in community settings that left them in institutions for so long, and we all know how wrong that assumption was.

Group Homes: Little Institutions

It wasn’t until I actually got some experience in a group setting myself through school that I realized how close they were, with no intention from staff or agency to them being that way, to little institutions themselves. When one or two staff is responsible for five or six people on a shift, there’s no way, in what each resident is supposed to consider his or her own home but has been declared to need staff assistance or supervision, lives on the agency’s schedule and the needs of the house. Dinner is what the staff makes and when the staff makes it. Bedtime is when staff says it is. Outings are when staff has the time. And, as we’ve seen in the recent investigations of the New York State group homes, it’s easy for abuse to go on in these environments.

But What to Do?

I’m not trying in any way to suggest that it’s easy to look after an adult child or sibling with intellectual disabilities full-time at home. There are issues involved with this: supervision (particularly when safety is an issue), care, and helping the individual to construct a meaningful day. But I think we need to ask ourselves, not just because group homes are closing more and more but because sometimes we make an assumption that a group is what the person needs when it may not be…is a group home the only option? Is there another living setting that could work?

For example, if the person doesn’t want to live at home but doesn’t quite have the skills to live alone yet, is there another family that they could pay room and board with, plus a little extra for some support with things that they find difficult to do (laundry or bill paying, etc.) Some agencies help families to set up placements like this.

Or if the person is living at home, what community supports are there to assist with caregiving? Some that may be of help are:

– nursing/supportive housing programs
– day support programs
– adult respite programs
– support workers
– informal support networks such as family and friends

Government funding for these sorts of things is unfortunately low right now right (at least in Canada. It’s a time to be creative, to network with other families, and to pool funding when possible to get the most out of supports. And a time to let your government know that if it expects you to have an individual in your family with a disability of any kind live at home with you, you need the support to make that happen.

The most important part of all of this is our attitude toward this. We can choose to look at people with intellectual disabilities having even closer ties to the community than group homes can give as a burden, or as something worth working toward. I told the teens with which I worked, “Assume the resources are there and that we just have to find them.” I’d rather look at the group home challenge this way, and hope that other agencies will as well as they plan to move people out of the group homes that are closing.

And, of course, that we’ll all continue to advocate for as much support for families as possible.

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Sex and Disability, and a New Book

Sex and disability can be a complicated business, but a new book has just been released that will hopefully help those with questions.

Intellectual Disability and Sexuality

I’ve written before about the widespread (and completely erroneous) assumption that adults with intellectual disabilities don’t have sex drives and therefore don’t need education about sex, sexuality, and sexual safety. http://www.girlwiththecane.com/wp-admin/post.php?post=161&action=edit

It’s not only erroneous, but completely unfair.  People with intellectual disabilities have the right to be in relationships and, when the time is right for both, to express physical love for each other. They may need counseling for longer periods about the potential consequences of decisions of sexual activity…but then again, plenty of people go off and have sex, presumably having gone through sex education in high school, still believing things like “Women can’t get pregnant the first time they have sex”.   *Everyone*, people with intellectual disabilities included, needs good, quality sexual education.

But, we already know that I have strong feelings on that. And I’ve certainly thought about sexuality issues for people with physical disabilities – but issues for people with intellectual disabilities have always dominated, because of the work that I do. Until recently, after some conversations with some women with physical disabilities. And then I saw the news about this book on Twitter, which made me think even more.

This blog is about how pleased I was to see that a book about sex has been written for people with all sorts of disabilities.

http://www.beyond-ability.com/disability/the-ultimate-guide-to-sex-and-disability-for-all-of-us-who-live-with-disabilities-chronic-pain-and-illness

sexuality

“The Ultimate Guide to Sex and Disability”: For All of Us Who Live With Disabilities, Chronic Pain, and Illness”

Because, like accessibility issues, most people just don’t think about how a physical disability and/or illness and/or chronic pain would affect their sex life until it becomes an issue. And there simply aren’t enough resources out there to help people navigate sex and disability, given that sex is such a difficult issue for so many people to talk about to begin with.

With so many professionals saying that sexuality is such an important part of our make-up, there’s no way that this part of life should just be expected to end because of a disability or illness or chronic pain. Sex and disability should be able to co-exist. I’m happy to see that “The Ultimate Guide to Sex and Disability” has been published. I hope that it helps people  to discuss issues around disability and sexuality with partners, medical staff, and care providers, and that the people they talk with will be open to hearing the information that the book presents. Open, non-judgmental dialogue about this subject is very important.

I may even buy “The Ultimate Guide to Sex and Disability” myself…learning is always a good thing, right?

 

 

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“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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