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Friday, 30 December 2011

Happy New Year!


Happy New Year!

It's December 31st, and tomorrow it will be 2012.

I started this blog almost 6 months ago. I am really enjoying being a disabilities blogger, and developing relationships with other bloggers who are passionate about disability issues. I plan to keep writing for as long as people will keep reading!

Asking a Favour from My Readers


As we go into 2012, I have some questions for my readers:

  1. Is reading this blog useful for you? How so?

  2. What would you change about this blog?

  3. Are you experiencing any technical problems with the blog?

  4. Are there any specific disability-related issues that you'd like to see
    covered in the blog?

Please leave your answers as a comment to this post, or send me an email at girlwiththecane@gmail.com if you prefer to answer privately.  Answering the questions helps me to plan the blog's future direction and to address technical problems, so thank you for taking the time to answer!

Have fun this New Year's Eve and be safe!  Happy New Year!

New Year



Thursday, 29 December 2011

Federal judge rules that NYC needs more accessible taxis

Michael Bloomberg's concerns that accessible taxis are uncomfortable, potentially unsafe, too expensive to have on the road, and not really what people with disabilities want will have to be shelved. Federal judge George Daniels has ruled that only having 230 accessible taxis in the fleet of 13 000 yellow taxis in New York City is in violation of the Americans with Disabilities Act. The Taxi and Limousine Commission can only issue new medallions to accessible taxis until it provides a plan for improving access for people who use wheelchairs.

http://www.unitedspinal.org/2011/12/27/judge-rules-nyc-taxis-violate-americans-with-disabilties-act/

Why Accessible Taxis?


From the linked article: "As wheelchair users, it is often assumed that we want to stay home, or that we’re satisfied with the status quo. Nothing could be farther from the truth. We are just like any other American. We want to live, work, play and worship in our communities. These things, which are so often taken for granted, are impossible without on-demand, low-cost transportation, like taxis. We’re proud to be on the leading edge of this issue and look forward to the opportunities that come with it for people with disabilities.” - Paul J. Tobin, President and CEO of United Spinal

News That Makes My Day


I've been following developments in this story since I started this blog. I've been really disgusted by the dismissive way in which Michael Bloomberg has responded to concerns about lack of accessible taxis, and at his rationale for not considering adding more accessible taxis to New York City's fleet. He's demonstrated, it seems to me, a real ignorance of the transportation challenges that citizens in New York (and tourists) who use wheelchairs face on a daily basis, and a disrespect in general toward people with disabilities.

As I've said elsewhere in this blog...London's full fleet of taxis is accessible. There's no reason why New York City can't do it.

I'm looking forward to seeing more accessible taxis on my next visit to New York City

More posts on this issue:

http://www.girlwiththecane.com/accessible_cabs/

http://www.girlwiththecane.com/michael-bloomberg-accessible-cabs/

Tuesday, 27 December 2011

Lost a Limb...Regrow a Limb?

Hello again!  I hope that everyone had a great Christmas and that you're all looking forward to New Year's!

I spent Christmas with my family, at my sister's house. I got lots of opportunities to play with my little niece and work on my techniques for making her smile and laugh, holding her the way she likes (so that she can see everyone), and picking her up. I'm very aware that there are many childcare that skills I that I haven't yet mastered, but with each visit with her I feel more and more confident about my ability to look after her using one arm.

I think that's why I've been a bit grumpy about a commercial that I've been seeing on television recently. It's one of those commercials where people with various ailments and their doctors talk about how "We *will* find a cure for ____" (cancer, diabetes, etc.), and of course I know that these research efforts are very important. Besides my AVM (which is not supposed to be hereditary, but I've stories that suggest that they do seem to run in families), women on my mother's side tend to die young from cancer, and there's stroke and diabetes on my father's side...it's not exactly comforting.

Lost a Limb? We Can Cure You!


The part of the commercial that annoys me is when the young doctor comes on and says, "We *will* find a way to regrow limbs."  Granted, I haven't lost a limb, but I pretty much live one-handed, and I don't feel like I miss out on a whole lot. I actually wrote about this in article right before Christmas, about how I'd once talked with a woman online who couldn't understand why her blind date hadn't told her before their date that he was missing a hand. I suggested that perhaps he was fine with the fact that he was missing a hand and didn't see any need to tell her. But clearly she'd had a problem with it.

When I hear things like, "We *will* find a way to regrow limbs," I feel the same way. I feel like it's society saying to people who have lost a limb, "We have a problem with you being like this, so we are going to cure you," when many of these people may not a problem at all with how they are living.  Society has the problem with the disability, not the person living with the disability.

Lost a Limb: Accessibility Woes


Not that navigating society without a limb isn't difficult, particularly if one has to use a wheelchair. However, much of that difficulty with being in a wheelchair happens because accessibility is so slowly becoming a priority.  I can speak from experience on this one...it's not so miserable being in a wheelchair when buildings, spaces and transportation are accessible. Again, it's been society's problem with people with disabilities that's made having disabilities difficult. Thank goodness that's changing.  It will be interesting to see whether medical science can regrow a limb by the time that all Ontario buildings have to be physically accessible (2025).

Lost a Limb, But Still OK!


I'm fine with having little function in my left arm and hand. There are some things that I obviously can't do, but I manage. I went through a process of becoming fine with who I am with those impairments, as I imagine I would if I lost a limb.

Perhaps some people would welcome medical interventions that took away their disabilities. I'm not saying I wouldn't try an intervention myself if it could bring back a lot of function in my arm and hand. But the blanket assumption that all people who have lost a limb want/need to be "cured" bothers me. It suggests that they're not good enough, or can't have productive, fulfilled lives,  the way they are right now.

And that's simply not true.

Friday, 23 December 2011

"My Princess Boy" and My Christmas Wish for the World

I saw a wonderful segment on Dr. Phil's episode on "Radical Parenting" today. Cheryl Kilodavis talked about her son Dyson and how his love for all things pink and pretty inspired her to write "My Princess Boy", a book on the importance of accepting differences.

A Little Boy in a Dress


Kilodavis talked about how Dyson, now five, had been interested in sparkle and glitter and dresses from age two. They showed several pictures of him in dresses over his jeans as he played sports, and a video of him showing his three most favourite dresses. He's an adorable little boy, and clearly seems happy, social and active. Kilodavis said that the doctors that they'd taken Dyson to had told her and her husband that he was a very healthy, well-adjusted little boy, and not to over-encourage the fascination with dresses...but not to discourage it, either. In light of that, the Kilodavis' decided to support Dyson's preferences, whatever they happened to be in that moment. If they changed later on, they'd support those too. They would be adults that their son could count on to guide him to be the best that he could be...however he chose to dress.

People Fear "Different"


I like Dr. Phil because he's very committed to child welfare and because he has taken bullying on as a personal cause. In the interview with Kilodavis, he identified people who are "different" (specifically, people of a "different" ethnicity, who have disabilities or who are struggling with GLBTT issues) as the most common targets for bullying behaviour. I found Kilodavis' opinion that kids are becoming such bullies because adults are modelling bullying behaviour really intriguing. I was also deeply touched by how she talked about that she's just trying to support her little boy, who's secure and happy with who he is, and trying to give others tools to do the same thing, hoping that they'll say, "Yes, we will."

Dr. Phil seemed to think that "My Princess Boy" would go a long way toward helping children learn about accepting differences. I will be buying a copy of it for my personal library.

"My Princess Boy" and Other Beautiful People


Between personal experience, experiences of people that I've supported, experiences of friends and of their children, and even the experiences of children (and adults) that I hear on the news, I feel like bullying, hate speech and hate crime has taken too much of me. I feel like it's taken too much of us as a society.

My Christmas wish is that everyone finds people that will say "Yes, we will" while the rest of the world is smartening up about learning to accept differences. Because life's a lot more pleasant when you've got people around you who will love you unconditionally while you're just being who you are.

Thank you to the Kilodavis family for what they do to educate people about the importance of celebrating our differences.

More on "My Princess Boy" here: http://www.myprincessboy.com/index.asp

Interview with Dr. Phil about "My Princess Boy": http://www.drphil.com/slideshows/slideshow/6479/?id=6479&slide=0&showID=1694&preview=&versionID=

I'll see you after Christmas. Happy Holidays to you and yours. :)

my princess boy

Monday, 19 December 2011

My Brain AVM Story: Leaving Ottawa

I was in Ottawa today, and it brought back a lot of memories. It's almost 11 years ago to the day that I walked out of the Ottawa Rehabilitation Centre after being in hospitals since the end of May. I'd be going home for good.

Ottawa, December 21, 2000


My last day at ORC was marked by my infamous tantrum about a day nurse that lied about me at a previous meeting being scheduled to represent Nursing staff at my discharge conference. Administration eventually declined to send someone from Nursing if I refused to have her there. This was fine, as far as I was concerned. My psychologist read Nursing's notes, and the nurse who'd thrown me under the bus (as far as I was concerned) didn't get to speak. It was a win-win for me, really. The whole sordid story behind that is here:  http://www.girlwiththecane.com/brain-avm-4/

All of us on the unit were leaving that day, because the unit was closed over Christmas. Some people would be returning in the new year for more inpatient therapy, or for outpatient therapy. I wouldn't be, so I said good-bye to all my friends: Nick and Angela, and Helene, and Alison, and Katie. Some of them I'd see again. Angela and I spent a week together at her home in Ottawa in the next year, and I saw Katie a few times when I went to Kingston to visit my sister. The others slipped off my radar. I've tried to find some of them through the Internet, and haven't been able to. Angela kept in touch with some of them, as she went to ORC for outpatient therapy. But some even she lost touch with some of them. Perhaps they wanted to forget that time in their lives.

I said good-bye to all my physiotherapists and occupational therapists, and my social worker and my psychologist, and the doctor that oversaw my team. I was nervous. The hospitals were friendly places for disabled people. The buildings were accessible and people were okay with me moving slowly and I knew that if I had a seizure I was surrounded by people who knew what to do. I knew that the "real world" wasn't always like that.

Good-Bye Ottawa Rehabilitation Centre


I walked into ORC using a cane. I was shaky and I didn't get very far before I needed to use my wheelchair, but I walked in. I was a lot less shaky when I walked out, but my wheelchair was right behind me. I needed to use it when Dad took me to the mall so that I could do my Christmas shopping before we left town.

Today, nearly twelve years later, I did my Christmas shopping without a wheelchair. I walked into McDonald's without my cane, in fact. We don't need a disabled parking placard for Dad's car anymore because I simply don't qualify for one.

It's taken a lot of hard work, and I know that there's still hard work to come. But things are very different than that day that I walked out of Ottawa Rehabilitation Centre, and that really struck me today.

I think I needed to remember that today - that I've faced challenges before and worked hard and gotten to a good place, and that I can do it again.

What reminds you that you can get through the tough times, when you need that bit of encouragement?

Saturday, 17 December 2011

Decisions, decisions...

Elizabeth McClung and I have been having a conversation via comment on my essay "Get Up" (from my 2006 book "Run, Run Because You Can"), which I recently posted last week. It's got me thinking about decisions. Specifically, it's got me thinking about how everyone has the right to make bad decisions.

Elizabeth Said:


"Trying 10 times and failing might mean setback right?

I can't stop thinking about the complicit attitude and acts of visitors, nurses, and others in keeping this man who wanted to not be in a wheelchair to force him to be there.....for his own good (determined by others).

You wrote that your safety when climbing a mountain is not assured. So why did you get to climb and he got locked down against his will? Without further information I don't know but it doesn't amuse me or delight me, it makes me alternate between nausea and anger, as it seems a recorded discrimination based on age, not on will."

I always appreciate Elizabeth's feedback, because she often helps me to view things in different ways. I'd never viewed the story in the way she suggested. I'd always assumed that the staff had what they considered a good reason for keeping this gentleman from leaving, which was obviously what he wanted to do. Her comments made me start to think about what I would I would have done as this man's worker if he was person with an intellectual disability.

What Would I Have Done?


It's difficult to say, truthfully, because there's a lot of information that I don't have. Perhaps, like I was right after my stroke, he was confused about the new limitations on his body and didn't realize that he couldn't walk anymore.  Perhaps he had severe dementia and didn't even realize where he was. Perhaps he was simply too ill to go home and didn't want to accept it.

I realized after thinking about this that I really don't know much about the policies for keeping someone in the hospital who doesn't have awareness of how ill he or she is. If there are psychiatric factors associated with the person's diagnosis, then the doctor may choose to keep him or her in the hospital on that basis.  This man may also have had a power of attorney making decisions for him. Or he may have been waiting for transfer to a physiotherapy unit. I had to wait awhile.

But, assuming that none of these were variables, did the hospital really have a right to keep him in when he'd so strongly expressed a preference to leave? Plenty of people without disabilities choose, for a variety of reasons (some of them not-so-logical)  to leave hospitals against medical advice.

The Right to Make Bad Decisions


I'd need someone who works in a hospital to answer me for sure. And I know that on some days I certainly wished I could "save" the people I worked with from making decisions that I knew were going to make life infinitely harder for them, especially if I couldn't understand why they were making those decisions. But making decisions for people wasn't my role, ever, and I would never want it to be.  It wouldn't be fair of me to say, "This is better." I just tried to present options, emphasizing that the choice was the person's.

Everyone's allowed to make bad decisions, no matter how much we wish they wouldn't. I hope that if I'd been this man's worker, I'd have fought for his right to make the decisions he wanted, even if they were ones with which I didn't agree.

And I certainly would have had a conversation with the staff about the belt restraint on the wheelchair. Restraints should *always* be a last resort.

Thank you for the conversation, Elizabeth. I always enjoy talking with you.

Check out Elizabeth's blog at http://elizabethmcclung.blogspot.com/

Tuesday, 13 December 2011

Practicing My Auntie Skills

I'm blogging from my sister's house today. I'm visiting with her to help her get ready for Christmas.

Practicing being "Auntie Sarah"

Of course, this means that I get to spend some time with my adorable little niece, Gillian, and practice my "auntie" skills. She's now almost four months old. She grows and changes so much that she's practically a different baby every time I see her. Now she's very strong: she holds her head up, and tries to roll over when she plays on her floor mat, and screws up her little face and tries to pull herself out of her ExerSaucer when she's had enough of bouncing around in it. She looks around the room to find the source of new sounds, her blue eyes wide and alert. She loves looking at faces. When she's in a good mood, she'll smile and giggle when I make funny faces at her.

I could play with her for hours.

You Never Know What You Can Do Until You Try


Me and Gillian (first thing in the morning)
However, it's still felt strange, when I'm around her. I always feel like I'm the only adult who can't pick her up  and soothe her when she cries. But today Rachel talked about how she often scoops Gillian up with one arm      while she has to carry something else, and speculated on how I should easily be able to do that given the strength   in my right arm. So I gave it a try. And I was thrilled to discover that, yes, I'm able to scoop Gillian up from a lying-down position using my right arm, bring her up to my shoulder, and even turn her around to have her lie over my arm (her favourite position, and Rachel's favourite position as a baby as well, come to think of it).

I was over the moon. Rachel and Gavin were very       pleased. Even Gillian was happy, once I got her in her favourite position.

So, to date, I can change Gillian's diaper with one hand, and also pick her up from a lying-down position. I also gave her an afternoon bottle.

I feel much more like an auntie.  It's a very nice feeling. :)

Monday, 12 December 2011

Involuntary Sterilization: Never Again

Several feminist bloggers have recently written about a story out of Tanzania involving the involuntary sterilization of a woman with several children.  As an American doctors helped her to deliver another child, there was a problem with the epidural injection, and the woman stopped
breathing. The American doctor did chest compressions to save her life. Another doctor performed a tubal ligation, saying, "I think she does not need another baby after this." The American doctor later called the second doctor's actions "heroic"

Not Acceptable


When the story broke on the "Femnomics" blog, he defended his stance on the second doctor's actions by saying that it had to do with realities of life in remote parts of the world and that the sterilization was done with the risks in mind of what could happen if the woman got  pregnant again. But all I could think about was large group of women who were sterilized "for their own good".

(Read the whole story on the Tanzania sterilization here, plus the American doctor's defense of his actions, here: http://femonomics.blogspot.com/2011/11/involuntary-sterilization-cowboy.html)

Involuntary Sterilization in North American News


Meanwhile, North Carolina is currently trying to decide how much monetary compensation is owed to the 7600 people that its Eugenics Boards declared should be sterilized involuntarily between 1933 and 1977. According to a recent New York Times articles (http://www.nytimes.com/2011/12/10/us/redress-weighed-for-forced-sterilizations-in-north-carolina.html?_r=2&pagewanted=2&seid=auto&smid=tw-nytimes), 31 states had such eugenics programs. They were  "an experiment in genetic engineering once considered a legitimate way to keep welfare rolls small, stop poverty and improve the gene pool." The "feeble-minded", or people with intellectual disabilities or mental conditions, were often targets.

Not that America has the monopoly on the this. Forced sterilization was widespread in Canadian institutions for decades.  Even after the eugenics argument had fallen from favour, sterilization for women was still favoured as a way to them and the women who support them handle menstruation easily, as birth control, and as a way to protect them from abuse (see http://www.wwda.org.au/steril2.htm for a discussion of this).

Not Enough


North Carolina is currently proposing that the each person that was forcibly sterilized be given $20 000. I don't think it'll surprise anyone where I stand on this. There's a scene in the film "Erin Brockovitch", which (in case there's anyone left out there who hasn't seen it), deals with a lawsuit over a town's water that's got a cancer-causing compound in it, courtesy of a very large company. When the lawyers are trying to hammer out a settlement for each citizen that's been affected, Erin says, (and I'm paraphrasing), "I'd like you to consider what your kidneys mean to you...or your ovaries...or your kid's health...and times that by a million...and then come back with an offer. Anything else is insulting."

I think that's the kind of consideration that's needed here. These people need to go home and look at their kids' baby pictures, and think about how they would feel if the choice to mother or father that child was taken away from them without their consent (and quite possibly even their knowledge). And think about just what that sterilization was intended to do. And multiply whatever number they come up by another, substantial number. Then they might be getting close to a reasonable settlement.

And put the laws in place so that this never happens to anyone else again.

Anything else is insulting.





Friday, 9 December 2011

My Brain AVM Story - "Get Up"

This is another essay from my book, "Run, Run Because You Can".  You can read the first essay from the book that I posted in this blog at: http://www.girlwiththecane.com/brain-avm-story-20/


Get Up


On my first day on Penetanguishene General Hospital’s rehabilitation floor, I woke up thinking, “I can’t do this.  I don’t want to do this.”

Decide whether or not to get up after we’ve been knocked down is like standing at the foot of a mountain and deciding whether or not we’ve got the stuff in us to climb it.  Mountains are huge and craggy. They often rise through inclement weather.  Often, what’s at the top isn’t even visible from the ground.  Your safety isn’t guaranteed when you climb a mountain.

So why do it?


Because we must.  Because the human spirit hates to be grounded when it can climb.  Because we’re meant to go without fear and strike a trail that we can be proud of, right to the top of our mountains.

An elderly gentleman on my floor at Toronto Western was famous among staff and patients for repeatedly trying to escape from the hospital.  He could not understand that he was too frail after his surgery to be even walking on his own, let alone living in his own home.  He promised he would sit quietly in the wheelchair if they would let him get out of bed, but the nurses soon learned that he would hop up and make a beeline for the elevator as soon as he thought no one was watching.

He almost made it off the floor one night. One of my visitors mentioned to one of my nurses that he’d just seen an elderly man in a hospital gown heading for the elevator…did she want to know about that?

She dropped everything and ran from the room.

Never Give Up


I never met this fellow.  I never even saw him. I did, however, hearing from my family about his escapades, and the stories delighted me.  I do love people who go after what they want, and this man seemed to concoct a new escape plan every day.  He became so hard to keep seated the wheelchair that the nurses were forced to belt him in it, for his own safety.  He'd sit by the nurse’s station, as he claimed it was too lonely in his his private room, for which he paid.  He would plead with my sister each time she walked past his wheelchair, “YOU will let me out, let me out!”.  Dad once caught him trying to saw through the belt restraint with a plastic butter knife.

Faith, Hope, or a Bit of Both


Deciding to get up and try again needs that passion and conviction.  It’s a decision made in the soul.  When it’s made, heaven itself shifts, though we don’t always see the action that we want here on the ground.   “Whew, that was easy!” you might say when it’s done.  “This is what I have decided.”  That’s how these decisions are.

When there’s no choice but to hope that getting up is going to be worth it, everything becomes very clear and very easy.  It’s making that decision again, everyday, over and over, until you breathe it, that’s difficult.  Because you won’t make it once, twice, ten times...you’ll have to do it as many times as necessary, believing that it is going to pay off.  You can call that faith, or hope…personally, I think it’s a bit of both.

Whatever you call it, as long as you hang onto it, in whatever way that you can, you’ll be okay.  I believe that.

To Brighter Tomorrows


That first day, after I asked myself if what I did want was to be flat on the back for the rest of my life, powerless to look after even my most basic needs, totally forfeiting control of my body and my life, I decided I had no choice to but to get up.  And, as hard as it’s been sometimes to trust that whatever is at the top of my mountain is worth the climb, I’ll never regret taking that first step.

I am glad that I can still have faith enough to keep trying, and that I can dare to hope for brighter tomorrows.

Thursday, 8 December 2011

Transition Planning - Wishes and Dreams

This is the second post in a series on assisting young adults with transition planning as they leave high school and enter the adult world.  You can read the first here: http://www.girlwiththecane.com/transition-planning-1/

Community Living Kawartha Lakes developed a transition planning manual several years ago called "Building My Bridges from School to Adult Life - A Transition Planning Manual for My Future" which includes a page called "Wishes and Dreams". The idea of people having wishes and dreams sometimes helps students to better understand transition planning.

Everyone has Wishes and Dreams


Many young people with intellectual disabilities haven't thought about the fact that they could do anything in life other than what they're directed to do. In fact, they may have been explicitly told that they shouldn't try something because they won't be able to do it, or told some activities simply aren't options for them. It takes a while for some of them to really consider what they'd like to do in life and to start talking about it.

The people that have told them that they shouldn't try something or out-and-out forbidden it have sometimes done it with the best of intentions. They've not wanted to set the young person up for failure, or put them in a position where they could potentially experience disappointment or rejection. Sometimes they have concerns about the student's safety or well-being, and sometimes those concerns are legitimate. And everyone should be so lucky, to have people who are concerned about their physical and emotional well-being.

But everyone has the right to wishes and dreams, including people with intellectual disabilities. Transition planning is identifying those wishes and dreams, evaluating what's needed to make them come true, and coming up with a plan to do so.

Transition Planning in Action


A couple of examples...

  1. A student may want to go on to post-secondary education. Transition planning will include working with the school to sure that the student has all the courses that he or she needs to apply. In Canada, going to community college or doing an apprenticeship is an ambitious (but not impossible) goal for a student with an intellectual disability, and may take some time to achieve. There may be significant setbacks and disappoints along the way. But students need to learn to deal with setbacks and disappoints, too, just as everyone else does. Just because dreams are ambitious and may cause a student disappointment are no reason not to include them in a transition plan.

  2. A student may want to live independently. Many students with intellectual disabilities require skill-building and safety training, and sometimes some support services, to ensure that they will be safe in an independent living setting. Transition planning will include working with the school to see what independent living skills the student can learn there, assisting the family to apply for funding for a life skills worker, educating the family on how they can teach life skills at home, and assisting the student and to apply for supported independent living housing arrangements. Transition plan goals should take into account that the individual can learn new skills before reaching the goal.

  3. A student may have a goal that may be unlikely to reach for anybody.  Not many people are going to be professional ballet dancers, for example. But no one told me when I was ten that I couldn't take ballet, dream about ballet, and learn about what I needed to do to become one. I was eventually disappointed when I learned that I couldn't be, yes. But I found ways to continue to keep ballet in my life. Transition planning for the student who wants to be a Hollywood director will include researching ways to indulge his love of film in the community, perhaps through a job at a movie theatre or video store and expanding his social network to find friends to go to the movies with. Transition planning should be creative.

Wishes and Dreams of Friends and Family

Good transition planning is person-centred. People who are important to the student, such as family, friends, teachers and support people should be encouraged to talk about their wishes and dreams for the student's adult life. Ultimately, however, it's the student's life goals that should guide planning. As a transition planner, my first responsibility was to the student.

More about transition planning from the National Dissemination Center for Children with Disabilities (American resource):

http://nichcy.org/schoolage/transitionadult

Wednesday, 7 December 2011

Changing the World One Step at a Time

So, recently I've been watching a 2005 PBS documentary series from Netflix-on Demand about the Holocaust. It's called  "Auschwitz: Inside the Nazi State".

Because I'm Really Into Fun Television


As you might expect, a documentary series about the history of Auschwitz isn't exactly...uplifting. I'm not even sure what prompted me to start watching the series in the first place, as Holocaust informational material really disturbs my "no evil people, just evil acts" philosophy of life and ultimately distresses me. My sister visited Auschwitz on her tour of Europe and didn't really want to talk about it when she returned. I don't know if I could go there. I think the energy of the place would be too much for me.

I can't get my head or my heart around the Holocaust.  I can't even begin to fathom the horrors that people lived through, and what made their captors hate so much that they could put others through those horrors. I listen to the survivor interviews, and think, "How do you cope with carrying all that?"

And the thought, "I'm ashamed to be human," has passed through my mind.

Don't Want to be the Same Species As Such Horrible People


It's  not the first time I've pondered those things. I've thought them in response to hearing about hate killings of people because of their sexuality, such as Matthew Shepard. I've thought them hearing about acts of racism that people have faced over the years. I've even thought them in work, hearing about abuses that people with disabilities have had to endure from caregivers and supports (both paid and non-paid).

I'd like to believe that people aren't evil. But some days it's hard. And in my work, some days it feels like we're a very, very long way from a society where people with disabilities are respected and regarded as equals.

Some days it gets easy to ask myself, "What's the point? We'll never get there..."

Another Perspective


I finished the fifth documentary yesterday, and one of the comments from the panel discussion is what has brought me here. Jerry Fowler, who worked for the United States Holocaust Memorial Museum in Washington D.C. when the documentaries aired, said that from the Museum you can see the Jefferson Memorial. The Declaration of Independence is written on the walls of that memorial:  "All men are created equal". Yet at the time the Declaration of Independence was written, Fowler observes, men owned slaves, and would for another century. For another century after that, there was legalized discrimination.

But "All men created equal" was a beautiful sentiment, even it wasn't true when it was written, and it was definitely worth working toward...and still working toward today.  It would have been very easy at any given point in those next 200 years of legalized racism, "What does this mean for us, when it's so obviously not true?"  However, it's an idea that belongs in a space where everyone can see it and work toward it...even if getting there takes a long, long time.

(These are a paraphrase of Fowler's words...Netflix won't let me rewind this one and I actually had to let the documentary play through again to get to the interview a second time).

Changing the World


He was responding in general to a question about why we still seem reluctant to help countries that are struggling with genocide, even after all the lessons the West learned from its slow response to the Holocaust. I was encouraged by his idea that we need to be heartened by even the slow progress that humanity makes toward the ideal. I like the idea that the ideal *is* working toward, no matter how far away it seems.

On my bad days, when I ask myself why I and other disability advocates bother, I'll try to remember his words and think of just one step that I can take that day to get us a bit closer to the world I'd like to see...even if it's just a note to another disability advocate to say how much I appreciate their work...

Maybe that's the real key to changing the world. One little step at a time.

Monday, 5 December 2011

My Brain AVM Story: I Worry

I worry about a lot of people in my life.

I worry about my dad. His health is fairly good right now, but he lives on his own, and I worry about him getting lonely, or falling and hurting himself.

I worry about my sister and my brother-in-law and if they're doing okay as new parents. I worry about whether they have everything they need, and if they're adjusting okay to what I'm sure what must be a lot of new challenges (they appear to be doing very well, but I'm sure that with a new baby, a dog, and a cat, they have their "moments".) I changed my first diaper by myself over the week-end. Although it was less difficult with one hand than I thought it would be (fortunately for me, my niece loves being on the change table and didn't see to mind me tugging the clean diaper around underneath her to get it properly placed) I have no idea how especially single parents deal with everything involved in taking care of a baby.

I worry about friends that I know have a lot going on in their in their lives. Some live close, some live very far away. Most of the time there's not a lot I can do for either group of friends but be a listening ear (which makes me feel very helpless, and I've never liked feeling that way...it frustrates me).

After living on my own for so long, I've learned to deal with most of my health stuff by myself - my seizures (when I was having them), my migraines, my rare dizzy spells from Dilantin toxicity, the very rare time when I get sick and throw up. Lately, for some reason (I'm thinking a combination of chronic stress and perhaps a recent medication change), I've not been feeling as well as I'd like. And I've realized that it's difficult to admit to people that I don't feel well. I've  had so much invested in so long in being "okay", so that people don't associate any "not okay" with my disability and treat me differently, that I have literally forgotten how alarming it can sound to people when I say, "I had a little double vision today, so I took a nap," or "I was dizzy today, so I took a day off from writing,"

I don't like it when people worry about me. But sometimes, just like everyone else, I need a little TLC when I'm not feeling well. I'm learning that it's okay to ask people for that. I'm learning that it's okay to call my Dad and ask him to bring me some ginger ale when I'm not feeling well, just the way that I would gladly do for him if our situations were reversed.  Because he worries when I'm sick, and he wants to help.

I think what brought this all up was that when I went to see my sister and her family this weekend, she'd bought me a bag of groceries. There had been a major sale on at the grocery store at which she shops, apparently, and she'd filled a bag for me of things that she not only knew that I use every day (peanut butter, Lysol wipes for when the cats jump on the counters and tables) but also stuff that she knows I like but don't buy right now because they're just too expensive: Nutrigrain bars, my favourite crackers, cookies that I like, SnackPaks...

And it made me almost cry, because it made me realize that my sister worries too, and wants to help how she can.

And there was a message on the answering machine that night from a friend that I know worries, and called to find out if I was okay if I was okay after my day.

I worry about a lot of people. A lot of people worry about me, because they care. And I'm very grateful for all of them.

Saturday, 3 December 2011

International Day of Persons with Disabilities

International Day of Persons With Disabilities




December 3  is the International Day of Persons with Disabilities. It's a day to celebrate the contributions of people with disabilities and to raise awareness about their rights.

I knew that I wanted to blog about this in some way today, and I spent a lot of time thinking about it last night, and kept coming back to what Michael Bloomberg saying that having making all the cabs in New York accessible wasn't necessarily what people with disabilities wanted.

What Do People With Disabilities Want?


I'm not a scholar in the field, but I've worked with people with disabilities for over fifteen years, and I've been living with my own disabilities for over a decade. I think that our needs are fairly simple.

  1. Access to Buildings When we're cut off from buildings and from areas in buildings, we're cut off from experiences and from participating fully in the community. We don't have choices and opportunities that everyone else has.

  2. Access to Resources The current struggles to make web pages more accessible, to make menus easier to read, to make the justice system more navigable, etcetera, seem like overkill to some people without disabilities. But when you can't see a computer webpage because you're red-green colour-blind, or you can't read a menu because the print is too small, or you can't don't understand what your public defender is saying to you because you've got an intellectual disability, you're at a distinct disadvantage because of your disability.

  3. Respect for Rights and and Knowledge of Responsibilities  People with disabilities need to live in communities where, like everyone else, they have rights and responsibilities. People with disabilities, adults and children, are at a much greater risk for bullying or assault, sometimes by people are supposed to be taking care of them (paid and unpaid). Abuse can come in all forms (verbal, sexual, financial, violation of privacy, theft). Other rights that get disrespected are as follows: the right for a person to make their own decisions about their life, to be in relationships, to try new things, and to make health and/or money decisions. People with disabilities deserve to have rights abuse allegations take seriously, and need to understand that they have the responsibility to behave in ways that respect others' rights. Failure to do so will result in consequences for them, just as it would for people without disabilities.

  4. Opportunities to be a Part of the Community  Everyone has ways that they can contribute. Community members need to be open to having all sorts of people as volunteers and employees in the community and makes everyone feel welcome at community events.

  5. People-Centred Supports for Assistance When Necessary  Not everyone needs help all the time, but sometimes something comes up with which people need assistance. It's always nice to know that someone will be there if you need, whether it's a paid or non-paid support.

  6. Income Support for Those that Can't Work That Actually Reflects the Current Cost of Living  The amount that individuals receive on the Ontario Disability Support Program  leaves them at a poverty level.

The Challenges


Right now, setting up frameworks within communities where we can ensure that these five things are adequately addressed costs is taking a lot more time than it should. I believe it's at least partly because educating governments about the importance of getting funding to help address these issues is taking a long time. It's simply not high-priority.

And I think that's partly because you can't appreciate how vital these issues are until you've lived them.  I know from experience that it's difficult to realize how frustrating it is not to be able to get into a favourite restaurant in a wheelchair until you're in that position.

I didn't know until a couple of days ago that International Day of Persons with Disabilities existed, and I hope it will bring some much-needed awareness to what still needs to be done.

On the lighter side, here are some people with disabilities whose accomplishments we really need to celebrate on the International Day of Persons with Disabilities:

  1. Rick Hansen

  2. Christopher Reeve

  3. Albert Einstein

  4. Terry Fox

  5. Stephen Hawking

  6. Michael J. Fox

  7. Helen Keller

  8. Ludwig Van Beethoven

  9. Thomas Edison

  10. Charles Darwin

More about the International Day of Persons with Disabilities:

http://www.un.org/disabilities/default.asp?id=1561

Thursday, 1 December 2011

Filing taxes for social service eligibility = more people fallingthrough the cracks?

I was talking with a social services provider today about current eligibility standards for various Ontario social services programs. I mentioned new eligibility criteria that I'd come across for a particular service, and she said that she'd heard rumours that it may become part of eligibility criteria for the sector in which she works: filing taxes.

Makes sense, right? Taxes pay for social services...shouldn't people who use social services pay taxes and contribute to the funding of these services?

Ideally, yes. But the idea of making social service eligibility contingent on filing taxes troubles me.

Just Because People Aren't Filing Taxes Doesn't Necessarily Mean that They Are Trying to "Get Something For Nothing"


I know that there are people are out there who are avoiding filing taxes. I know that people have a number of reasons for doing so. I'm concerned that if receiving social services becomes contingent on filing taxes, people with disabilities who may not understand the importance of filing their taxes each year, such as someone with an intellectual disability or someone with a mental disorder, may be ineligible for services that they need. Not everyone with these disabilities has supportive family or friends to assist them with filing taxes, and government cutbacks to agency supports means that sometimes people may not have a support worker to assist them either.

A Step in the Wrong Direction


Social services eligibility criteria requiring someone to file taxes penalizes people who already may be very vulnerable, and potentially removes the opportunity to receive support from people who may be very badly in need of it already.

It's not a good way to go. Hearing that at least one Ontario service that I know have has gone this way and that another may go the same way made me feel sad and disappointed. We can do better for the vulnerable people in our society.

Tuesday, 29 November 2011

Torn About Rick Santorum

I've watched almost all the Republican Presidential Debates this time around, and I've

come away from all of them with a couple of consistent impressions. One of the strongest ones has been: I don't like Rick Santorum.

I don't like his stance on homosexuality and gay and lesbian civil rights. I don't like his stance on abortion. I don't like how he intends to balance the books in the US.

And I especially didn't like the video to which I've linked below.

Rick Santorum and People with Intellectual Disabilities


It seems inappropriate to me that he use Bella, his daughter with Trisomy-18 (which is like Down's Syndrome, but more severe), to generate warm-fuzzy "vote-for-me" feelings, granted that some of the services that he's pledged to cut will be services that will affect her ability to get a good education, good health care, and enjoy a stable future.

Rick Santorum talking about Bella

(For an excellent break-down of why this video is offensive, see the following link: http://badcripple.blogspot.com/2011/11/republicans-emotional-use-of-disability_16.html  He explains it much better than I do)

However, at a symposium on November 21, Rick Santorum told a deeply personal story about how for the first couple of months of Bella's life, he actually withheld love from her, figuring that doing so would make it easier to take when he lost her (as all the doctors told him was inevitably going to happen). The story of Bella's birth and first few months is too reminiscent of what many parents of children with Down's Syndrome say that they go through right after their babies are born. (I wrote about this at http://www.girlwiththecane.com/downs-syndrome/ ) ‎ Santorum and his wife were told that Bella would soon die, were encouraged to "let go", and had to fight to get a prescription for oxygen for her when they took her home from the hospital. The doctors apparently didn't feel that her life was worth fighting for. However, the little girl that doctors said wouldn't live a week is now three years old, and Santorum is obviously committed to making sure that these children that doctors want to give up on get a chance.

Rick Santorum talks about all this in this video, taken at the November 21 symposium:

http://articles.businessinsider.com/2011-11-21/politics/30424400_1_gop-candidates-confession-rick-santorum

Rick Santorum, You Were Doing So Well...


You'll notice that the title on that page is "Watch this Rick Santorum Video and Not Cry". I couldn't. Until I heard him talk about how in societies where there's socialized medicine, children like Bella die. This is simply not true. Nations with universal health care do not single out children with disabilities as targets for death. There does seem to be a perception among the medical community that some children are too "disabled" to bother giving intensive life-saving treatments, but, news flash - that happened within Santorum's own family, within the good ol' USA, with its decidedly non-socialized health care.

Then I was just annoyed again.

And so, I'm still torn about Rick Santorum.  However...

Politicians Are People Too


I found George Bush's Press Secretary, Tony Snow, appallingly annoying. I couldn't even really say why. I think I wondered how he could sleep at night, doing the job that he was doing. I had zero respect for him.

After he died of cancer, I saw a couple of documentaries on him. I saw that he was actually a pretty stand-up guy. He was devoted to his family, he'd hosted FOX News Sunday (one of the only FOX News shows that I find even remotely balanced), and it seemed like he'd actually done a lot of good in his career.

Since then, I've tried hard to keep reminding myself that politics just isn't an arena where the likable parts of people often get to shine.  I know from watching the bit of the November 21 Rick Santorum video that made me cry that we probably share some core beliefs and values about people with intellectual disabilities that could probably keep us talking for a while.

Would Rick Santorum and I be lifelong friends? Would I vote for him if I was able to? Probably not.  But he's a person too.

And isn't this all about looking more at our commonalities than our differences?

I would just hope that he would show me the same respect...

Monday, 28 November 2011

Fun stuff: NaNoWriMo and Me

Everything I need for NaNoWriMo!

Yay NaNoWriMo November!

On December 1, National Novel Writing Month, or NaNoWriMo, will end for another year.

NaNoWriMo started in the San Francisco Bay Area, but it's become international. The challenge is to write a 50 000 word novel in one month. I don't remember what year I started to attempt to do this. I had it in my head that I started when I was university. Looking at the history of NaNoWriMo and how it developed, I can see now that I must have started later...definitely post-stroke.

Why, in God's Name...


I like to write. I started writing fiction when I was eight years old. I don't write nearly enough of it. I know that's partially because I tend to edit as I write, and that bogs me down very quickly when I'm writing fiction. But when you have to write 1667 words a day just to ensure that you'll reach 50 000 words by the end of November, there's no time to edit as you write. Some people work from outlines, but I just write and see where the story takes me. Usually it's far from where I thought I'd go with it. And that's a lot of fun. It's a pressure-filled month, but it's a fun month.

And yet I'd never hit 50 000 words. I was always getting a little closer every year...but life just always kept me from getting to the 50 000 word mark and getting that official "NaNoWriMo Winner" badge for my website.

I'll have it this year, as I got to 50 000 words last night. Finished with a couple of days to spare. At last.

What Does This Have to Do With Disabilities?


Nothing, really. Except that I think that it's really, really important, for people that acquire physical disabilities, to look for ways to keep doing the things that they love to do.

I love to write. Lucky for me, that doesn't require any adaptations. I can use my computer. Hand-writing was difficult for a while. When I have to write quickly (like take notes in a meeting), I don't cross 't's or dot 'i's, because I'm still a little slower than everyone. But I type fairly quickly. Even if I didn't, there's excellent voice recognition software on the market. There's no reason for me not to write if that's what I want to do.

I also love to dance. I had to work myself up to signing up for ballet class, that's for sure. But I saw quickly that it was really a matter of expectations. If I'd gone in expecting to be able to dance like I used to, I would have been disappointed. That simply wasn't going to happen. That was a little difficult to accept, yes. But it also felt really good just to be dancing again, in the capacity that I could manage. When I could keep my focus on that - wow, those Saturday mornings at the ballet barre were fun.

It doesn't have to be perfect. It just has to be fun. When I can silence my inner critic and just go with the flow, in life and in writing...I never know where I'll end up.

(P.S. Thanks to everybody who cheered me on in my NaNoWriMo writing this year! I couldn't have done it without you!)

More about NaNoWriMo: http://www.nanowrimo.org/

Thursday, 24 November 2011

My Brain AVM Story: "Snowy Day"

Winter is here in Ontario.

We haven't had any snow that's stuck yet, but the temperature has definitely dropped - we've had freezing rain, and the snow won't be far behind.

I don't mind the cold so much, but snow annoys me. I'm much better at getting around in it now than I used to be, but it still creates too many obstacles that I just don't need.

I wrote this short personal essay about winter in 2006, when I was considerably less mobile. It appeared in a book of personal essays that I wrote called "Run, Run Because You Can". The book is out of print now, but I'm considering bringing it back in E-book form when I get the time to put it together.

Anyway...I hope you enjoy the essay.
Snowy Day

            Today the world is white.  Overnight, the temperature dropped to below -20 degrees Celsius, and we received five centimetres of snow.  The snow will continue to fall all day, the local weatherman assures me, and likely into the afternoon tomorrow. It is winter in Ontario.

I generally volunteer on Wednesday mornings, but today I will not risk walking into town and falling.  They don’t need me badly enough to justify a cab ride.  I could call my father, but I’m sick of bothering him at work for rides.  I call and tell them I will not be in.

Through my window, I watch the white world.  Today, stuck in my apartment, I feel stuck in my life.

“Your problem,” my father told me early on in all of this (and it does seem  oh-so-long ago today) “is that you’ve watched all those medical dramas on television, and you expect for all of this to be resolved in fifty-six minutes...it doesn’t work that way, love.”

Not in fifty-six minutes, I tell the snow, or fifty-six days, or fifty-six weeks, or even fifty-six months.  Soon it will be five years, sixty months, since the stroke.

I want to be fully recovered today.  Right now.

Successful people in our society move.  They are people that “go places”, that are “on the move”, “movin’ on up”, that “rise above the rest”.  They live “on the run”, and “on the go”.  They don’t stand and look at the world through snowy windows, they go out in it and make things happen.

“Stuck” is a knot in my throat and a brick in my stomach.  I will not be going to town.  I will not be going anywhere.  I can’t stop snow or melt ice, and I can’t make my brain realize that I have a perfectly useful left hand.

The thing about being stuck is that I totally put myself there.  You can’t feel stuck unless you’ve convinced yourself that there’s a better, “unstuck” state for you to be living in.

I think about what I would do if I went into town today

On days like this, days where I come up against a wall of “stuck”, I have to remind myself (as gently as possible, for this is the only way in which we should remind ourselves of vitally important things) that “success” in my life will flow from me just doing my best to be me.  Me, with a weak side and faulty wiring in my head!

Wednesday, 23 November 2011

Michael J. Fox is Awesome

Disruptive Philanthropy
I saw an amazing interview on Wednesday morning with Michael J. Fox.

Michael J. Fox is Awesome


Michael J. Fox will always hold a special place in my heart because:

1) I love the "Back to the Future" Trilogy

2) He's Canadian

3) For a person living with a debilitating nerve disease (Parkinson's), he's got the best attitude of just about anyone I can think of. It doesn't seem like anything gets him down (although I'm sure, like all of us, he has his days).

The interview I saw focused mainly on the role that the Michael J. Fox Foundation plays in finding a cure for Parkinson's disease. Fox sees himself as a "disruptive philanthropist" - he gives money to researchers, but he requires them to report yearly about their progress. This model of funding is apparently quite different from most, and Fox does it because it forces researchers to keep in mind that there are people at the end of the line waiting for the results of this research.

"Patient-Centred" Research


He used the word "patient-centred" in the interview, and I actually laughed out loud. Patient-centred! What an idea!  What a revolutionary concept, to design anything that is supposed to help people - supports, planning processes, research - *around* the people that these things are supposed to help!

Designing anything according to person-centred philosophy is more work. It requires more listening, more patience, and often more creativity to assist people to meet their goals. It can be sometimes be infinitely frustrating. But it's also infinitely important. It's a way of showing people respect and of saying to them that their goals and dreams are worthy of being taken seriously. It's easy to let person-centred methodologies fall by the wayside as staffing levels get cut...but it's because staffing levels are getting cut that person-centred planning, and creative, community-based ways of  assisting people with disabilities to meet their goals becomes even more important.

But back to Michael J. Fox.

He's Just Awesome


I'm more and more impressed by this man every time I see him interviewed. Anyone living with any sort of illness or disability can take a lesson from him about taking what life gives you and just...running with it. And about how sometimes being disruptive isn't always a bad thing. :)

Check out the interview here, including footage of Michael J. Fox's recent performance of "Johnny B. Goode":

http://www.ctv.ca/CTVNews/CanadaAM/20111122/michael-j-fox-parkinsons-interview-111122/

Tuesday, 22 November 2011

Obama's Inner Tommy Douglas

My father told me a story over the weekend about Tommy Douglas, the man responsible for bringing universal health care to Canada.

Tommy Douglas and Medicare in Canada


Medicare in Canada began in the province of Saskatchewan. Tommy Douglas was Premier of Saskatchewan when he introduced the legislation for Medicare in 1959, and the doctors in the province were so upset about its potential ramifications that they went on strike in 1962. The town of Kindersley was especially divided over the Medicare issue. It had its own system of health care provision management operating within the town, and didn't want to give up control to the government.

Douglas asked for a meeting in Kindersley with the town's biggest supporters and biggest opponents of Medicare. He walked into the meeting, simply said, "You all know who I am, and I know who you are. Medicare *is* going to happen, and it's going to happen my way,"" turned around and walked out. He got a phone call the next day saying that the folks in Kindersley had managed to work out their differences about Medicare. And a few years ago, Canadians voted Tommy Douglas the Greatest Canadian.

After hearing the story, I thought, "Obama needs to show a bit of that spirit. There's not enough of 'This is how it's going to be' about him right now."

Obama Finally Puts His Foot Down


I think we saw some of it the other day, when Obama spoke about the Supercommittee's failure to agree on how they're going to make more than a trillion dollars in cuts to the US budget.

Obama expressed regret that the Supercommittee wasn't able to figure out how to do this.  He said that if they've still got time to figure it out before their deadline of 2013. He also said that if they can't figure it out, there are automatic cuts locked in, totaling 1.2 trillion dollars.  He'd just rather that this be done with a "scalpel" rather than an "ax".

And he said to those in Congress who are already trying to get those automatic cuts undone, that he'll veto any of their efforts. The message to me was that, one way or another, these cuts are going to happen...whether people like it or not.

As frightened as I am by what 1.2 trillion in cuts could mean for people with disabilities in America (however the cuts come about)...this is an Obama that I like. He's finding his inner Tommy Douglas, and that man got a lot of good things done.

More on Tommy Douglas:  http://www.tommydouglas.ca/?page_id=88

Obama's speech about the Supercommittee: http://www.youtube.com/watch?v=ZYb0C2lvazE

Monday, 21 November 2011

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

Friday, 18 November 2011

Another Way of Looking at Group Home Closures

Group homes for adults with intellectual disabilities are closing across Canada and the United 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.

Monday, 14 November 2011

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?



Thursday, 10 November 2011

"Differently Abled"

More commonalities than differences
I've never been crazy about the phrase "differently abled". I remember first hearing it 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.

Tuesday, 8 November 2011

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:

  • 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.

The New York State Group Homes Situation

I found an awesome commentary on the New York Time’s “Abused and Used” series that I think 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

Monday, 7 November 2011

Lessons at Lunch

I caught up with a friend with an intellectual disability over lunch one day last week. 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. :)

Friday, 4 November 2011

New Series: Transition Planning

I’d like to do a series in the next little while on the importance of transition planning 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.