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Friday, 28 September 2012

250th Post! My AVM Story: Wishes and Choices

So, this is my 250th post! Do bloggers generally celebrate 250 posts? It seems worthy of celebration to me.

And it seems like a long time since I've posted about anything positive. So I'm going to post an essay that I wrote, in 2006: "Wishes and Choices". It's about how I was feeling about my recovery process at the time.

"Wishes and Choices" is still true...mostly. I'm a less little naive now. I no longer believe that everything happens for a reason, but, to quote Tom Lehrer: "Life is like a sewer: What you get out of it depends on what you put into it." I'm much more accutely aware now, however (not only because of my experiences but because of many, many discussions with others much smarter than I, not to mention hours and hours of having CNN on in the background in my apartment) that "stuck" isn't always a state of mind, that "staying positive" isn't as easy as everyone makes it sound, and that sometimes even working your hardest just isn't enough...particularly for groups existing in a social system that's stacked against them in multiple ways.

I've grown up a bit since I wrote "Wishes and Choices". I hope I'm a bit wiser...and that my writing has improved at least a little bit!!

But my main impetus for writing "Wishes and Choices". hasn't changed. As hard as it's been to get here since the stroke, I wouldn't change what happened. It got me here, to my 250th post, didn't it?

And I like being here. :) Thank you all for being here with me.

(Oh, if I ever reprint "Wishes and Choices" anywhere else, I'll find some way to say what I want to say without using "inner voice".  A promise to an editor friend.)
---


Wishes and Choices


I’ve always believed that things happen for a reason. Even “bad” things.

So, one day at Penetanguishene Rehabilitation Hospital, I declared to the social worker that if I had to do everything over again, I wouldn’t change a thing. I’d have the surgery, definitely. I’d have the stroke. Definitely.

Well, that’s more written on stone on some days than others.

Some days I can’t help thinking that it would be nice to have three wishes to put towards restoring my health. Or even one wish.

I’d have to phrase my one wish very carefully.

Should I wish to be healthy again? All things considered, I am fairly healthy. The arteriovenous malformation is no longer a problem. My seizures are more a nuisance than a health risk. Despite my weak left side, I’m actually more physically fit than I was before the stroke.

Should I wish not to have a weak left side? That still leaves me with a seizure disorder, which makes me unable to drive.  Losing that freedom has affected me, in many ways, more than the weak side. Not being able to drive is a huge hassle, especially living in a rural area.

Should I wish that I hadn’t had the surgery? That would leave me with an AVM in my head, making me a ticking time bomb. I would have almost certainly had at least one other bleed, possibly causing the same neurological damage as the post-surgery stroke did.

I should maybe wish that there had been no complications after the surgery. That would be the wish, I think...no stroke to cause a weak left side, no scar tissue to cause the seizure disorder. Brain surgery seems scary, but is more routine than people think. When it goes well (which is most of the time) people aren’t even in the hospital all that long. With a routine surgery, I could have gone home in a week or so, recovered for another three, possibly been back to work by July. Life would have gone on.

But.

Would I have met some of the strongest, gentlest, funniest, most loving, resilient, intelligent, determined and courageous people I could ever imagine?

Would I have the immense respect that I now do I for nurses (and the medical system in general), co-existing with the knowledge that sometimes I must speak with a firm voice and gently insist that I be listened to if I’m to receive the best that it has to offer?

Would I know how fun it is to run over bubble wrap in a wheelchair, or that you can tow at least two manual wheelchairs (with people in them) behind an electric one?

Would I appreciate how hard life can be for people with disabilities to live in a society in which it can be very difficult to manuouevre, both physically and emotionally?

Would I know in my bones that more people care about me than I can count, and finally be able to see how immersed in love I really am?

“Stay positive.” “Work hard for what you want.” “It’s what’s inside that counts.” Would these cliches have become part of my life philosophy?

Would I know how and when to ask for help, and feel comfortable doing so?

Would I know that just because life turns out differently than you expected doesn’t mean that it’s necessarily going to be worse?

Perhaps I would have learned all these things somehow if I hadn’t have had the stroke. Perhaps these were lessons I needed to learn, and acquiring a weak left side was just one way of getting there. Perhaps if the surgery had gone absolutely according to plan, I’d still be right here at age 29, writing a touchy-feely and somewhat vague reflection on how one wish could change my life.

Since I’ll never know whether different life circumstances would have taught me what I know now, brought me to this place where I am…perhaps I’ll just leave it at this:

I don’t need a wish. I have too many choices to fill my head with wishes.

I choose to hope.

I choose to find new ways of looking at the world.

I choose to be open to the connectedness between us all, to heal and be healed.

I choose to passionately pursue the things that give my life meaning.

I choose to celebrate the victories.

I choose to relax into my failings, and to try again.

I choose to stop, rest, and listen patiently and compassionately to my inner voice.

I choose to stop trying to control everything.

I choose to believe that “stuck” is just a state of mind.

I choose to not to let people handicap me.

I choose to let myself feel what I need to, when I need to feel it, and to ask for help when things get too hard.

I choose to let my mind and spirit run fast and free.

I believe…and I insist…that I don’t need a fully functional body to do any of these things.

I don’t wish. I choose.
---

Have a great weekend. You're all awesome. :)

(Oh!  I've got a new web presence...check me out here: http://topfemaleexecutives.com/Sarah-Levis)

Tuesday, 25 September 2012

Update on NFDI2012 (National Forum on Disability Issues)

For a summary of what's been going on with NFDI2012, see http://www.nfdi.org/ or my post on the conference: http://www.girlwiththecane.com/nfdi2012/

Presidential Candidates Sending Representatives to NFDI2012


As of yesterday, both Barack Obama and Mitt Romney confirmed that they will be sending representatives to NFDI2012 to present their respective campaign's position on Americans with disabilities. Edward M. "Ted" Kennedy, Jr. will represent Barack Obama, and Rep. Cathy McMorris Rodgers will represent Mitt Romney.  Senate candidate Sharrod Brown (Ohio) will also send Rep. Nancy Garland as his representative. Republican Senate nominee Josh Mandel (Ohio) has not confirmed whether he will attend or send anyone in his place.

Former CNN White House correspondent, anchor and Washington bureau chief Frank Sesno will moderate.

Press Release: http://www.prnewswire.com/news-releases/president-barack-obama-former-massachusetts-gov-mitt-romney-sending-representatives-to-columbus-ohio-sept-28-to-speak-to-americans-with-disabilities-170974711.html

All seats are filled for the event, being held at the Hyatt Regency in Columbus, Ohio on September 28. You can still "attend" NFDI2012 via webcast, however. Visit the website to sign up.

If you have concerns about disability issues, you need to hear what the candidates have to say in order to make an informed decision when you vote. Listening to these representatives is likely the closest you're going to get, given the fact that disability issues were given only a passing nod in Clinton's speech at the Democratic National Convention, and not mentioned at all during the Republican National Convention. Please take advantage of this opportunity.

Monday, 24 September 2012

Report Finds that Ontario Health Care Professionals DiscriminateAgainst People with Mental Conditions

With all my Amercian election fervor recently, new readers might wonder wonder why I don't write about my home country (and the country in which I live), Canada, more often. It's really because (and this is a failing on my part that I'm trying to correct) I don't listen to a lot of Canadian news. I read the newspapers when I'm out for coffee, but that's not every day.  But please don't think it's because I'm so patriotic that I won't call my own country on nonsense when I see see it, because I'm not. Nonsense a-plenty is happening here in the North, as the Toronto Star's  recent article about discrimination by Ontario  health care professionals against people with mental conditions aptly proves.




Let's jump right into this one, shall we?

Ontario Health Care Professionals, Meet Me at Camera Three


Congratulations, Ontario health care professionals. You've really distinguished yourselves here. It takes a special breed of health care professional to say to someone, "Had I known you were crazy, I wouldn't have operated on you," or to leave someone with abdominal pain who actually needed urgent surgery go untreated for ten hours because they're a recovering drug addict.


I'm not saying that every one of Ontario health care professionals would treat a "crazy" person like this...I've been the "crazy" person and been treated with respect and dignity by doctors and nurses...but to those Ontario health care professionals that would treat people with mental conditions in this way, shame on you. And shame on the medical facilities in which you operate, for allowing this sort of discrimination to go on.


I wonder how you all sleep at night.

Next Steps


All of this came to light in a report by Ontario's Human Right's Commission. Commissioner Barbara Hall has a number of ideas for stopping the discriminatory practices as revealed by the report. (See link above)

I'd be interested to hear how the attitudes of the Ontario health care professionals stack up to those of other medical professionals around the country. Something tells me that, like most discriminatory attitudes toward people with disabilities, this isn't something that's isolated to one geographic area, but something with roots deeply embedded in North American society at large (dare I say even Western society at large?)

And I think that's what makes me feel saddest about the whole thing. That it's just a small manifestation of a huge problem to which the solution seems simple (at least to me): Treat people with disabilities the same way that you'd treat people without disabilities. But that doesn't seem at all simple to implement, either policy-wise or in peoples' hearts and minds.

But I guess we all do what we can, right?

Have a great day. :)

Thursday, 20 September 2012

That's Just Rude! I Don't Have to Answer That!



My awesome blogger friend Lorna did a post on this video over at "Gin and Lemonade":  http://ginlemonade.wordpress.com/2012/09/18/the-answer-is-yes/. I had never seen the video before, and found myself nodding through most of it. People didn't ask me these questions or make these remarks when I was in a wheelchair, but I wasn't out in public very much when I was in my wheelchair. But I've hung out with enough people that use  wheelchairs that I've seen examples of most of what's shown in the video.

People that comment on the video rightly point out that people with other sorts of disabilities get treated in these ways, too.  When I'm out in the community with the people with intellectual disabilities that I've supported, people do tend to ask me questions about the person instead of asking them.  I've seen that this tends to happen less in smaller communities, where people tend to know who everyone is to a greater degree (uncomfortably so, sometimes, and you know what I'm talking about if you've ever lived in a small town). But it does still happen.

I've gotten a lot of these questions and remarks because of my cane and my arm. I've had people assume that because I have physical disabilities, I have intellectual disabilities as well. Many people assume that I don't work. I've been called inspirational, which really only bothers me because I'm not sure how to respond to it. I don't feel inspirational. I don't feel even particularly noteworthy most of the time. I just live my life dealing with what I have to deal with, the same way that everyone else does.

What Bothers Me


I watched the video a couple times, thinking that, yeah, ignorance about disabilities has definitely resulted in some extremely problematic patterns of talking to people (and around) with disabilities. I remember hearing at a funeral once, about the deceased, from a friend who didn't know I could hear her : "It's better this way. He wouldn't have wanted to be a wheelchair for the rest of his life," and it gutted me. "Like I could have been?" I thought, running from the room. "Does she believe that about me?"

No one knew whether I'd ever be able to walk again.

But what really struck me, watching this video, was the sex question. Besides thinking that if someone asked me "Can you have sex in that chair?" I'd say, "I usually get out of the chair," I thought, "What a wildly inappropriate thing to ask a stranger, disabled or not!" Who expects someone who's presumably an acquaintance at best to answer a question about their sex life?

Apparently society feels entitled to ask people who use wheelchairs that question, and feels entitled to answer. And I'm *really* curious as to where that attitude came from.

I watched the video again, evaluating the comments and questions through that filter of social appropriateness. And I'm starting to wonder if the problem isn't just that people don't know what to say to people with disabilities, or don't have an appreciation of disability etiquette...it's that people somehow have gotten the impression that it's okay to treat people with disabilities rudely.

It wouldn't be considered remotely polite to:

  • Ask an elderly male neighbour, "Can you still, uh, function like a young man, if you catch my drift?"  So why's it okay to ask a man that uses a wheelchair about his sexual functioning?

  • Grill a woman in the grocery store wearing a scarf on her head about whether she has cancer, what kind, how long she's had it, etc. So why are these invasive questions about a person with a disability's medical history okay?

  • Stare, in general. Aren't people brought up not to stare anymore? (Caveat: I'd rather have a little kid stare at me openly and then be given the opportunity to ask me questions than have an adult stare at me and try to hide the fact that they're doing it.)

It's interesting when you looks at the video in this way. There's all kinds of rudeness - some of it very disability-specific, others of it just...rudeness in general (like the pick-up line that ended the video). And I think how you categorize each comment depends on who you are your personal history.  The "Jesus will heal you" thing, for example...I believe that this is ultimately rude too, yes. But more for the assumption that I want to be healed than for the imposition of someone's religion on me. I can let the religion part roll off my back now. But that's a very personal view, coming from years of work to come to terms with religion's place in my life. Others may feel differently about it (as I did at one point in my life, when any perceived attempt to convert me would have made my blood boil).

Do you think that it's become okay to treat people with disabilities rudely? What do you think has caused it?

Oh, and Canadians get asked, "My cousin/roommate's brother/dog groomer's son-in law lives in Canada...do you know him?"  all the time...%-)

Monday, 17 September 2012

NFDI2012 - Tell the Candidates That You Want To Hear from Them!

Okay, I know that I said no more politics for a while. But this is important. And if you're trying to make a decision about who ndfi2012to vote for in the upcoming US Election and you've got concerns about disability issues, this really is something that you should know about: The National Forum on Disability Issues (NFDI2012) is happening on September 28 in Columbus, Ohio, and the push is on get Obama and Romney to attend. Attend if you can, and get the candidates there!

The National Forum on Disability Issues - NFDI2012


I didn't know that NFDI2012 was happening until the organizers approached me over Twitter last week.

From the website: "The National Forum on Disability Issues is an historic nonpartisan event. The 2012 event builds on the success of the first ever forum organized by the disability community in 2008. The forum will focus on the disability positions of the 2012 Presidential candidates. Candidates for the U.S. Senate seat from Ohio will also be invited to participate. The candidates will be given the opportunity to provide their positions on a wide variety of disability issues directly to the disability community."

Personally, I think it's a fabulous idea. Besides the little nod to people with disabilities in Clinton's speech, there's been no talk from either candidate about why the 57 000 000 people with disabilities in America should vote for either of them. I know that I have questions:

  • How do the candidates plan to get the people with disabilities that can and want to work, into the workforce?

  • How does the education of students with disabilities factor into Obama's plans to strengthen the education system?

  • How will Romney make sure that people with disabilities who can't work and can't aare able to afford medical care if he overturns the Affordable Health Care Act?


I'm sure that you've all got great ones that you can add to the list.

Help Get the Candidates to NFDI2012!


Obama and Romney have been invited to NFDI2012, as have Ohio candidates for US Senate Josh Mandel and Sherrod Brown. None have committed yet to attending. Obama sent a representative in 2008, and Republican candidate John McCain participated via satellite.

NFDI2012 has provided letters on their website to send to each candidate telling them that you'd like them to be there, and as well as other social media contact media information for them, at http://www.nfdi.org/invite_candidates/.

I follow @nfdi and frequently retweet their awareness tweets about NFDI2012, which often also go to the candidates as well.

Why Do I Care About This?


Why do I care so much, given that I'm Canadian? Because people with disabilities in Britain are dying right now because of the catastrophic cuts that their current government has made...because I've seen what happens in Ontario when governments drastically cut supports (any Ontario readers remember Mike Harris and his Common Sense Revolution?)...because I fear that more cuts are coming, sooner than we're prepared for...and because I hear rhetoric from America right now that makes me think that if Americans with disabilities (and those who love them, support them, and advocate for them) don't demand some answers from candidates while they have the chance, they're not going to be able to make a truly informed decision on Voting Day.

As much as possible, you need to know what might be coming down the tubes when you vote for either candidate.

We don't have an opportunity like this in Canada when federal elections come around. I don't believe that Britain does either. Be at  NFDI2012 - September 28th in Columbus, Ohio (you can "be there" via webcast, too - I'm signed up to do so), and let your candidates know that you want them to be there, too.

More information:

http://www.nfdi.org/

http://www.disabilityscoop.com/2012/09/13/presidential-forum-disability/16447/

Saturday, 15 September 2012

I Stand With Henry

I'm back to the blog this weekend to talk about a self-advocate that I found out about this week, and to ask you to take five minutes out of your schedule to let him know, "I stand with Henry!"

Self-Advocacy Rocks


I used to work with teens with intellectual disabilities. Some of them weren't even aware when they started with my agency that they had any rights. A few from that same group left my program see me on the street now and are excited to tell me about the latest way in which they stood up for their rights.

It's an amazing privilege, to work with someone on becoming a good self-advocate...to examine with them what that means, and to see it start to sink in. Seeing the person start to apply the skills in their lives - well, that's a real "this is why I do this work" moment.

It takes courage to stand up for your rights, and practice - it's a skill. I was always proud of the teens I worked with for trying, no matter how it turned it. I've had to do it myself as a person with disabilities, and it can be pretty daunting, even when you're got support around you. I'm sure that I don't have to tell many of you this.

Keeping all this is mind, you can understand why I stand with Henry, and why I think you should too.

I Stand With Henry...Do You?


Henry has the makings of an amazing disability self-advocate. A young man with autism, he's non-verbal and uses a communication device. He wants you to know something:



Personally, I don't see why he can't go to his neighbourhood school. I stand with Henry.

If you do too, please show your support by leaving a comment on his video at YouTube, or on the blog that he wrote:

http://ollibean.com/2012/08/23/my-civil-rights/

There's also a Facebook page:

https://www.facebook.com/IStandWithHenry

It takes a lot to put yourself out there like this. Let's let Henry know that there are people who have heard his message and that agree that inclusion is the best way to go!

Have a great weekend...

Friday, 14 September 2012

AWA - A Shocking Case of Ablism at a Hospital


I talked recently about institutions, and how many of them were environments that left people with intellectual disabilities little to no control over their lives or power to make basic choices about what was right for them on even the most fundamental level. I've also written about how some members of the medical community (or even families themselves - see the posts that I've made about Annette Corriveau and her belief that she should have the right to terminate the lives of her two adult children with severe disabilities) believe that people with severe disabilities don't have anything to live for. When those two things attitudes toward people with disabilities - the idea that non-disabled people have the right to deprive them of control over their lives and to take their power to make choices on a fundamental level, and that their lives aren't worth living - combine, you get horrid stories like those of the man that the media is referring to as AWA.

Doctor Puts Do Not Resuscitate Order on Patient With Down's Syndrome Without His Consent or Knowledge



I know we've discussed ableism in hospitals before, such as Amelia Rivera and Paul Corby and their organ transplant refusal issues, and the struggle that mother's sometimes have to get medical treatment for infants with Down's Syndrome. But nothing beats coming home from the hospital and finding a DNR in your luggage that you didn't know about (let alone consent to).

AWA, a man with Down's Syndrome and dementia, found himself in exactly that position after being released from The Queen Elizabeth The Queen Mother Hospital in Margate, Britain, last year.  51 years old, AWA was in the hospital to have a feeding tube fitted. His attorney, Merry Varney, says that this is an extreme case, but that doctors frequently authorize DNR orders "without consent or consultation".  http://uk.news.yahoo.com/downs-patient-not-resuscitate-row-160531147.html

The DNR stated that staff was not to perform resuscitation on AWA in the event of a cardio or respiratory arrest with no provision of review, because of "Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties". The family was not told about the DNR either, even though they say that they and a carer were there to visit with AWA almost daily.

This is beyond reprehensible.

Medical Establishment, Meet Me At Camera Three


I've covered some low ways that doctors have treated people with intellectual disabilities and their families, but this is...pretty goddamned low. Thank God the doctors that have cared for the people I've supported in my career have been, almost without exception, very attuned to the issues involved with working with this particular population...treating them with dignity and sensitivity...because if any of them had tried to pull a stunt like this with people that I supported, they'd be toast. I hope that the doctor who signed off on this DNR never practices medicine again, and that the family takes the NHS down with their lawsuit.

Too harsh? No. None of the reasons for the DNR are justifiable, on their own or with any other reason. There was simply a decision made that, if something should happen, this person was too disabled to live a life that was really worth bringing him back to.

In addition to being disability discrimination by a hospital, that's an insult that cuts to the bone - to AWA, and to everyone who's life he's touched. And it's a shocking (and disgusting, quite frankly) abuse of the medical establishment's power.

It's also a disrespect to the system in which all doctors and nurses work. Informed consent for these sorts of things is a cornerstone. And if there were concerns that AWA didn't have the capacity to give consent, the hospital should have tracked down the next of kin and talked to them - not given up because no one couldn't find them at the hospital (as the hospital says they couldn't).

Everyone involved in making this DNR legal should have known that.

Beyond AWA - This Is Getting Old


I'm getting tired of saying this. I'm almost 35, and I'm getting middle-aged and cranky.

Enough with the blatant discrimination.

It's the 21st century, and it's time that people got with the program.

If you think that it's okay to violate someone's rights because they've got a disability - you're wrong. It's really that simple. That sort of discrimination is called ableism, and there's just no place for it anymore.

And it's time to start holding corporations and systems that perpetrate systemic ableism accountable. Yes?

But where to start...I'll have to do some thinking about this over the weekend...

Tuesday, 11 September 2012

Disability Discrimination by Airlines - Enough is Enough

I blogged about disability discrimination by airlines not long after I launched this blog (http://www.girlwiththecane.com/physical-disabilities-1/ ), when I learned that sometimes airlines insist on breaking down electric wheelchairs to put into the luggage hold for a flight even when it's not necessary. I also talked about a story where an airline returned a wheelchair to it's owner unassembled at the end of the trip and just said, "Sorry".

I've heard about other stories of disability discrimination by airlines since then.

Disability Discrimination by Airlines: Physical Disability


William Peace regularly talks about stories of disability discrimination by airlines in his blog, "Bad Cripple". Peace is a paraplegic that regularly travels by airplane. In a post that astounded me (http://www.badcripple.blogspot.ca/2012/06/cant-you-walk-little-bit.html), he talked about an experience where airline staff that were supposed to be assisting him to exist the plane said:

  • "Just walk a little bit to get to the wheelchair."

  • "You can't walk just a little bit?"

  • “You mean he cannot walk at all? What do we do? How do we get him out of the seat?” (This after he'd told the staff repeatedly that he needed a straight-back wheelchair to get off the plane and out to his own wheelchair).

He was on the plane for 45 minutes after it landed before they figured out how to disembark him. That could make a person late enough to miss a connecting flight, particularly if they have to board that flight in a wheelchair.

And according to Peace, it's not far from how he's normally treated as a passenger in a wheelchair:

"When one travels via any American carrier and uses a wheelchair it is an invitation for abuse. There is a deeply entrenched bias against people with a disability in the airline industry--especially paralyzed people who are perceived as a burden and flight safety risk. European based airline carriers are even worse. What I wrote about pales in comparison to other experiences I have had. More than once I have crawled out of a plane in frustration and anger." (bolding mine)

Disability Discrimination by Airlines: Other Disabilities


Peace's blog also has stories about disability discrimination by airlines against people with autism, people with intellectual disabilities, and, most recently, a story that's gotten a lot of attention about American Airlines refusing to let a 16-year-old with Down's Syndrome and his family fly. http://latimesblogs.latimes.com/lanow/2012/09/teen-with-down-syndrome-barred-from-american-airlines-flight.html

Joan and Robert Vanderhorst and certain that their son, Bede, is the latest target of disability discrimination by airlines. The family has flown together many times without incident. The only difference this time was that they decided to fly first class. They were apparently barred from flying because the pilot was concerned that Bede was too unruly to fly to be seated so close to the cockpit. There was a concern that he could become a disruption if the pilot had to make an emergency landing. Video of Bede that Joan took while the family was being informed of this decision shows him sitting quietly at the gate.

The family was rebooked on a United flight. They were put in the back row of economy class, and no one was seated around them.

From the media acounts...it's suspect at best. Peace has much stronger feelings:

http://www.badcripple.blogspot.ca/2012/09/american-airlines-bigotry-abounds-yet.html

http://www.badcripple.blogspot.ca/2012/09/american-airlines-attempts-to-explain.html

He's been tracking these things for much longer than I have. I'm more inclined to go with his assessment that American Airlines simply didn't want someone with Down's Syndrome in first class on the airplane...perhaps not even on the airplane at all.

What to Do About It?


I've been lucky (very lucky, apparently)...I've not had any truly negative experiences with airlines since I've had my stoke, and I've flown several times. It does seem that at the very least the policies and procedures around assisting passengers with disabilities need to be updated, and that airline and airport staff need to undergo mandatory disability sensitivity training. But who will enforce this, and handle complaints?

Peace says that he complains to the Department of Justice when he experiences profound disability discrimination by airlines, but  that it doesn't do much good. Who do you complain to when the DOJ won't do anything?

The fact that no one will stand up to the airlines about these injustices revictimizes the people that go through them. And sometimes there really is no choice but to fly - it's like making someone go back to an abuser and say, "I need you...please don't hurt me."

If you think I'm being melodramatic, go back and read Peace's words again. He's crawled off a plane rather than put up with the way the airlines treat him. I don't know what was going on, to put him in that headspace, but I'd argue that those experiences were trauma-inducing. He might disagree (making him, as I've suspected, a far stronger person than I am.)

But I think we can all agree that disability discrimination by airlines has to stop. Somehow, they must be held responsible for these actions.

Monday, 10 September 2012

Forward! (Obama's DNC Speech)


And, after I comment on Obama's DNC speech, I take a break from politics for a while. Promise. :)

Oh, Obama...


So, having missed Obama's DNC speech when it originally aired, I took some time out of my Sunday to listen to it.
I have to admit that this point I'm kind of tuning out on the economics when people give these speeches. It seems like both sides can manipulate the numbers on job creation and the economy to either make Obama look terrible or to defend what he's done. And I realize that there are a whole lot of people that think that this election should be about nothing but the economy, but if I was a voting American, I wouldn't be one of them. So there's my bias going into this (like anyone who reads regularly doesn't know that I'm biased towards the Democrats, but it's good to get these things out there.)

Now, all that being said...if I was an undecided voter - say, the Canadian just starting to learn about American politics that I was four years ago - I think I would have found Obama's speech a little confusing. I was a little confused by it myself after following American politics and Obama's message for four years. I felt like I had to fight too hard to put the pieces together.

Clinton Nailed It


When Clinton put it in front of me, I got it: "If you want a winner-take- all, you’re-on-your-own society, you should support the Republican ticket. But if you want a country of shared opportunities and shared responsibility, a we’re-all-in-this-together society, you should vote for Barack Obama and Joe Biden." Maybe it's because I'm Canadian (and therefore socialist, I'm told), but that got my heart a-thumpin'.

And I eventually got that message listening to Obama's DNC speech as well. But I had a couple of "Where's he going with this?" moments before he got there, when he was talking about:

  • How America was all about "the promise that hard work will pay off; that responsibility will be rewarded; that everyone gets a fair shot, and everyone does their fair share, and everyone plays by the same rules"
  • How Americans "insist on personal responsibility, and we celebrate individual initiative.  We're not entitled to success. We have to earn it.  We honor the strivers, the dreamers, the risk- takers, the entrepreneurs who have always been the driving force behind our free enterprise system, the greatest engine of growth and prosperity the world has ever known."

I went and found these passages in particular in a transcript of Obama's DNC speech, because they really threw me off. I understand that he's talking about the American Dream.  I thought that Obama understood, however,  that there's a large segment of the American population (and the bulk of people with disabilities fall into this category) that get a much more limited shot at at the American Dream because of the place they occupy in society and the resources available to them because of the place that they occupy on society. And I'm not just talking about monetary resources. I'm talking about having advocacy skills to help get your kid with disabilities into a good school, for example, or the confidence in herself that a woman needs to get herself out a domestic abuse situation. There are all kinds of "capital" in this society.

Obama's DNC Speech: Bottom Line


Like I said...Obama's DNC speech eventually struck a chord in my idealistic heart. He deserves kudos for addressing education, the student loans programs and for renewing his commitment to health care reform and to strengthening Social Security. I think his appeal to being good citizens was his way of trying to tie it all to Party values neatly and concretely, as Clinton did...but I really did feel like I had to work a whole lot harder to get there.
And there was no mention in Obama's DNC speech of people with disabilities. I won't hold this against him. You can't mention everyone in one speech.

But Clinton worked us in. Just sayin'.


Sunday, 9 September 2012

Gabby Giffords and Emotional Manipulation by the Democrats


I don't usually blog on the weekends, but last night I saw video of Gabby Giffords saying the Pledge of Allegiance at the Democratic National Convention, and I knew right away that I had stuff to say about it. Stuff that's not likely to make me popular, but...I've never worried about that before, so....

Before we get into that, though, some quick words about the DNC. Wow. I missed both Biden's and Obama's speeches because I was talking to a good friend on the phone, but I plan to watch them on YouTube this weekend. But I saw just about all of the other major speeches, and the tone of this convention was, for me, a one-eighty from the RNC. It was energizing, hopeful, focused on Obama's accomplishments instead of ripping on Romney (for the most part), and really just a pleasure to watch. I'm not going to pretend that the party doesn't have it's shortcomings (aptly covered by Jon Stewart on "The Daily Show" over the course of the week; he's always been good at demonstrating that he can rip into whatever whatever party is in power when they deserve it), but aren't we talking about the lesser of two evils at this point? It looks to me like the Democrats are the lesser by a *substantial* margin at this point.

But back to Gabby Giffords.

Gabby Giffords Pledges Allegiance


Readers may remember that former Congresswoman Gabby Giffords was shot in the head during what was presumed to be an assassination attempt on her in Tuscon, Arizona in 2011. She survived the attempt, but was critically wounded. She has spent the time since the shooting on recovery: surgeries to repair the damage caused by the bullet, physiotherapy and occupational therapy to restore function to her left side,  and speech therapy. Gabby Giffords now walks with a cane, has problems with her vision, and still goes to speech therapy to address issues with aphasia.

Her story of recovery is certainly inspiring, and it was great that she could be at the DNC. I didn't Gabby Giffords recite the Pledge of Allegiance, but the clip that I saw and the activity on my Twitter feed told me that people were certainly affected by it. People talked about her strength, her bravery, and how they were crying.
I admire Gabby Giffords too. But I didn't cry. I thought, "So, the Dems paired a person with disabilities with the Pledge of Allegiance to create a "tug-at-your-heart-strings" moment.  Looks like it worked."

I realize that it's not quite that simple with Gabby Giffords because she was also a public figure who was the victim of a terrible unfairness and this is one of her few public appearances since the shooting. But doesn't that create even more of an argument for emotional manipulation?

Willing to Admit Crankiness


Not that there weren't a whole lot of moments at both conventions that were designed to play on peoples' emotions. Every time a speaker tried to do the "call and respond" or tried to get people to chant something, that's a big-time play on peoples' emotions. I often found myself in danger of getting swept away by the emotion in particularly the DNC.

And I do admit that I'm a little hot-under-the-collar about using people with disabilities to manipulate public perception this week anyway. I caught a Facebook discussion about a company that apparently gave itself a pat-on-the-back via social media for using children with Down's Syndrome in it's advertising. The person who started the thread was upset because she said that if she'd not read that the model had Down's Syndrome, she never would have known, and that if the company wants to give itself for kudos for using a model with Down's Syndrome it should at least use a model that looks like he/she has Down's Syndrome.

The issue for me was that the company felt the need to point out that they use kids with Down Syndrome in our advertising. Like that makes them a better company? Or like it's a defense against accusations of wrongdoing?

"We're good people...we use kids with Down's Syndrome in our advertising!"

Like they deserve a medal for incorporating diversity in their ad campaign?

Do it because it's the right thing to do, not because it makes you look better.

Democrats, Meet Me At Camera Three


You don't deserve a medal for giving a woman with disabilities such a prominent place in the DNC.

(You do get kudos for Bill Clinton being the first speaker at either convention to mention people with disabilities.)

If you really want to honour people like Gabby Giffords, who have the will to live as full a life as possible with disability (and there are many of us), put policies in place that allow us to, and that allow the people who care about us to assist us to. For all disabilities.

Obama, I'll be watching your speech to see what you have to say about this. I desperately want to believe that you want to help.

(P.S. Miss Giffords, from one person with one-side weakness to another...you look like you're doing great. Keep up the fine work.)


An interesting blog post on the myth that all people with Down's Syndrome look the same: http://ellietheurer.blogspot.ca/2011/04/myth-all-people-with-down-syndrome-look.html

Thursday, 6 September 2012

Disability Advocacy and Social Media


Today I've been thinking about social media and how powerful it is it is for advocacy workers. Disability advocacy workers especially!

Not About Disability Advocacy, But Bear With Me


When I was 10 or 11, I was very concerned about environmental issues. Specifically, I was concerned about endangered species, and the rate at which species of plants and animals were becoming extinct. I was so concerned that I wrote a letter to the then-Prime Minister of Canada, Brian Mulroney, telling him about how I thought that the Canadian government needed to take action to make sure that as many species got moved off the list as quickly as possible.

I did get a response - the typical form-letter response about how the Prime Minister had read my letter and how my concerns would be taken into consideration, on the official letterhead with the rubber-stamped signature. I was thrilled at the time, even though it probably got no closer to Brian Mulroney than the desk of his Assistant to the Assistant in Charge of Mail from Children (or something like that...you get my meaning.) I still have the letter somewhere.

In just 25 years, we've gone from that being the closest that I could get to giving feedback to my country's leader, to having my blog post about Mitt Romney's RNC speech ending up on the US President's Google+ page, because someone who read my blog thought that he should see it.  Stuart MacKenzie on Google+ commented on a photo on Obama's page:  "You would do well to check out +Girl With The Cane . What are you going to do for people with disabilities?"

Social Media and Disability Advocacy


Now, I'm not so naive that I think that just because a link to my blog ended up on Obama's Google+ wall that he's ever going to see it, let alone read what I have to say.  He's likely got a team dedicated to social media strategic planning and the day-to-day implementation and monitoring of that plan (let's face it...he has to). Like Mulroney and his mail back in the day, I'd think that he only sees a carefully chosen sample of what's out there.

But there's a lot of power in just having that access to our leaders - through Facebook, through Twitter, through Google+, through contact forms on websites. It may still be filtered, but it's instantaneous, and it's accessible to anyone with Internet access and the skills to use social media, and it's entirely changing the landscape for how politicians and public figures of all kinds interact with their supporters and detractors. It has implications for all people that use the internet because, as remote as the chance of someone who can do something with what we've put out there might seem, there's always a chance that they might - a much better chance than there used to be, when all you could do was send a letter. Disability advocacy workers need to learn to use this to their advantage.

Take disability advocacy workers over in Britain fighting welfare benefit reform, for example. Sue Marsh and other members of the Spartacus team have used social media to build an entire movement of people protesting catastrophic budget cuts to services with disabilities. Most of the group's members are too ill to do much disability advocacy outside their homes. I see much of their strategizing go on over Twitter, with more sustained and specific planning going on in a web forum, their blogs acting as platforms for the group's message. This is not a small group of people talking amongst themselves. They are responsible for producing the Spartacus report, a document about the needs of people with disabilities in Britain that was submitted to the government, and Sue Marsh is regularly interviewed in British media about Spartacus and it's work.  Spartacus is a force to be reckoned with, and it galvanized itself as a disability advocacy movement, got itself out into the public's face and gathered support using social media and the opportunities that grew from using it effectively.  I'm sure that links Sue's blog, and that of the other major Spartacus name, Kaliya Franklin, have ended up in the email of British politicians many times over the last couple of years.

Disability Advocacy is Great, But Don't Forget Self-Advocacy


Tuesday night I was one of many people who tweeted my displeasure to CNN Political Contributor Erick Ericson when he referred to the Democratic National Convention as "The Vagina Monologues". I'm not a computer genius. Some of the teens with intellectual disabilities that I used to support were very good with computers. One of them used to brag to me that he knew how to get around not being able to access Facebook on his school's computers (to which I always said, "Please don't tell me how...I don't want to be able to answer questions about that.")  There's no reason why a person like that, obviously with more than a basic grasp of computers and Internet and experience with social media, couldn't incorporate social media use into self-advocacy:

  • A tweet to Goodwill's Twitter account about his feelings about people with disabilities getting paid below minimum wage.
  • Signing an online petition to protest a law that discriminates against people with disabilities.
  • Starting a blog about life with a disability, as Sarah Ely has about living with Down's Syndrome http://sarahely8989.blogspot.ca/

Obviously people with intellectual disabilities in particular may need training and perhaps support to ensure that they're remaining as safe as possible on the Internet (heck, there are a lot of adults without intellectual  disabilities out there that could benefit from these things) while doing disability advocacy or self-advocacy. The Internet can be a scary place, and everyone needs to know how to be safe.

But I think that it's also a very exciting place for disability advocacy workers and self-advocates. We should learn to use it to our maximum advantage, and to teach others who wish to use it for disability advocacy and self-advocacy to do so as well.

After all...the Internet isn't going away, is it?



A post I did on Internet safety for people with intellectual disabilities:  http://www.girlwiththecane.com/facebook/

Tuesday, 4 September 2012

In Honour of World Cerebral Palsy Day...

...another look at Jan Brunstrom!

I blogged about Dr. Brunstrom for Developmental Disabilities Month. The important work that she does with children with cerebral palsy makes that entry worth repeating!

Jan Brunstrom: Helping Children with Cerebral Palsy Be the Best That They Can Be


Jan Brunstrom is a doctor at St. Louis Children's Hospital, in the Pediatric Neurology Cerebral Palsy Center that she started in 1998. The twist? She has cerebral palsy herself.

http://www.ksdk.com/news/article/306823/3/In-their-shoes-The-cerebral-palsy-doctor-with-cerebral-palsy

The thing that I really liked about hearing about Jan Brunstrom is that she's ability-focused. In a world where supports are so deficit-focused (interested in hearing what the person can't do, rather than what he or she can do, to determine eligibility for supports), that's such a breath of fresh air.

And any program that encourages people not to use the word "can't" is fine by me!

Jan Brunstrom's program is very high regarded and sees over 2000 patients a year.   She's an  amazing example of someone a developmental disability (cerebral palsy) making an excellent contribution to society.

How are you celebrating World Cerebral Palsy Day? Learn about other people with cerebral palsy who are changing the world by following @abilitycatcher on Twitter.

 

Monday, 3 September 2012


Must blog about Mitt Romney's RNC speech...must blog about Mitt Romney's RNC speech.
I've been trying to do this since Friday morning.  Damn Mitt Romney's RNC speech...it's given me a nice case of writer's block.

I know you're probably all sick to death of hearing about Mitt Romney's RNC speech, but indulge me a bit. Regular readers will know that I'm an American politics junkie, despite my Canadian citizenship, and I've been very restrained about writing about Election 2012 for quite some time.

I watched most of the evening coverage of the Republican National Convention, last week, despite some moments during the speeches that felt like they were causing me physical pain. Mitt Romney's RNC speech actually had only a few fleeting seconds where I felt that way, which surprised me. Actually, Thursday night was relatively pain-free. I admit that I was getting a little bored by the time Clint Eastwood showed up, so I wandered off to make a snack and missed the full effect of Invisible Obama...and I started channel-surfing halfway through Marco Rubio's speech...but I listened to everything in Mitt Romney's RNC speech.

Halfway through Mitt Romney's speech, I tweeted, "But what are you going to do for people with disabilities, #MittRomney?"

Nothing About People With Disabilities in Mitt Romney's RNC Speech


Not that it surprised me mightily to hear nothing about people with disabilities in Mitt Romney's RNC speech. I don't expect to hear anything about us in Obama's speech next week at the Democratic National Convention. Canadian politicians don't talk about us either.

But I feel like there should be some concerted thinking going into how to win the vote of people with disabilities and the people who love them/work with them/are concerned about the issues affecting them. After all, US Census data shows that approximately 20% of Americans have a disability. http://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html That's a lot of voters, Mitt Romney, especially when you consider that the families of these people and people that work with people with disabilities will be evaluating your position on disability issues as well.

As Powerful as the US Gov't Is, It Still Has *Some* Power


Discussing Mitt's plan to bring the USA back to prosperity with a friend, I pointed out that I've heard nothing, in Mitt Romney's RNC speech (or in anything else he's said) about what he's going to do about the fact that the unemployment rate for people with disabilities is nearly twice what it is for people without disabilities. He said that he that there wasn't much that the government could do about that.

I take issue with that. You can't legislate what people think and feel, no. But you can certainly legislate that they can't discriminate or cause harm on the basis of it, and there's precedent for the federal government stepping in on cases where this is happening:

  • Declaring that groups have protection against discrimination in the workplace, hate speech, and hate crimes.
  • Recently, sending the Department of Justice to investigate whether New York City's extremely low number of accessible taxis was in violation of the ADA.
  • Even more recently, starting the process to phase out sub-minimum wage for people with disabilities.

Just something to think about.

Matters of Employment


In Mitt Romney's RNC speech (in all his speeches, in fact) is, he's talking about getting people back to work and cutting entitlements. If he wants to get people with disabilities working and off income supports, he's going to have to acknowledge that employers are going to have to be willing to accommodate needs. When I worked in special education classrooms, the schools had to work around the fact that I couldn't assist with lifts and transfers when working with students in wheelchairs. Sometimes this was a struggle to coordinate, but I was good at my job in all other areas, so schools didn't mind moving things around for me a bit - but they did need to be willing to work with me, or the job wouldn't have worked. Employers will need to keep in mind that they need to approach hiring people with disabilities in this manner - they can get very good, very qualified people, but may need to bend on things like permitting extra breaks or allowing an employee to work from home once a week, allowing a nurse to come into the office for half an hour once a day to assist an employee with health needs, or doing a staff education session on how to respond when someone is having a seizure.

Some people are going to need supports if they're going to work. Look at Anthony in my previous entry. He's started his own business (and I've heard from Mike that they're swamped with requests!), but he needs some support to keep things going. And speaking from my experience, most of the people with intellectual disabilities with whom I've worked need either some agency or one-on-one support to get and keep a job. If Romney's goal is getting them employed and off income support, he has to be willing to spend some money on supports somewhere else.

And some people have disabilities that simply don't allow them to work. Unless the US government is prepared to have them starve/freeze to death, there has to be money for them to keep themselves alive. They didn't ask to not be able to support themselves, and charity/churches/community simply can't handle all the needs of these individuals (in addition to those of all the other individuals in communities who are living in poverty). Besides, not everyone has a family or community to support them, and faith won't keep you warm and fed.

There was a promise in Mitt Romney's RNC speech that he would "help you and your family". I just don't know if, for families that have people with disabilities in them, that would be the case if Mitt Romney were elected. But this is all conjecture. Since there was no talk about people with disabilities in Mitt Romney's RNC speech (or any of his other speeches) how's anyone to know what his position is?

We'll see how Obama fares this week at the Democratic National Convention.