Back to WordPress! With a Focus on Web Accessibility…

Laptop with wheelchair icon in a yellow diamond sign, centred on the white screen. Keyword: Accessibility

Image Description: Laptop with a white screen. The wheelchair icon in a yellow diamond sign is centred on the computer screen.

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Well, I’m back to blogging. On my new WordPress set-up.

Here’s some advice to all of you bloggers and would-be bloggers out there: If you’re going to move your large blog off WordPress to another platform, be darned sure that you’re going to be satisfied enough with the new platform that you’re not going to want to move back. Because it’s very easy to move a large blog off of WordPress…it’s a hell of a lot of work to move it back on.

Especially if you’re committed to making your blog as accessible as possible.

An Apology Re: Accessibilty

Despite all my talk about physical accessibility, I’ve historically not been very good about ensuring that the blog is as web accessible as it could be, and that’s not something that I feel good about. Until this summer I didn’t really know what it took to make a website accessible, but as someone who at least knew that it was possible for websites to have accessibility barriers on them that could be fixed, I should have taken the time to investigate my own site for barriers and fix what I could.

I’m sorry.

What Brought This On and Where I’m Going Now

This summer I took a course in auditing websites for accessibility. I know what the issues were on the old blog. I’m trying to clean them up on this blog, post by post. I moved from Medium partly because I didn’t have enough access to the code to do that.

I’m trying to clean up at least 5 posts a day, but this will take a little while. Give me until Labour Day. If after then you still spot accessibility issues – like photos without alt text or an image description, or uncaptioned videos (CNN videos are bad for having no captions) where there isn’t an option on the YouTube frame to turn them on and I haven’t provided a transcript, please let me know at admin@girlwiththecane.com.

And for those that have trouble seeing the self-hosted blog, I’ll still cross-post to Medium publication.

Forgetting May 29th – My Stroke Story

I wrote this when I was hosted at Medium, because when I moved there I lost the page on which I’d posted my stroke story…but I thought I’d post it here again anyway. Enjoy!

Cartoon of a woman on the phone saying, "I got kicked out of the hospital today...apparently "Stroke Patients Here" didn't mean what I thought it did!" Keyword: Stroke

Image Description: Cartoon of a woman on the phone saying, “I got kicked out of the hospital today…apparently “Stroke Patients Here” didn’t mean what I thought it did!”

***

 I realized two things last week:

  • The page that had my story on it didn’t travel over from from my WordPress blog when I moved to Medium.
  • May 29th came and went, again.

So as much as I don’t like talking about myself, I figured that I’d better put something up here on Medium about who I am and how I came to be here.

The story actually starts on November 7, 1999, when I had a small hemorrhagic stroke in the middle of a job interview in Parksville, British Columbia. I didn’t realize at the time that I was having a stroke; I thought that the sudden, intense headache was due to a migraine. I wouldn’t learn until that night, when I’d gone to the hospital because my neck was hurting and I was concerned that I had meningitis, that there was blood in my cerebrospinal fluid.

That’s bad, apparently. Bad enough that the hospital called my father in Ontario and suggested that he fly out. By the time he got there the next day, I was in a hospital in Victoria, and I’d been diagnosed with an arteriovenous malformation (AVM) in my brain that had started to leak.

AVMs, according to the National Institute of Mental Health are “abnormal, snarled tangles of blood vessels that cause multiple irregular connections between the arteries and veins.” AVMs can occur anywhere in the body, but brain AVMs are particularly problematic; they “damage the brain and spinal cord by reducing the amount of oxygen reaching neurological tissues, bleeding into surrounding tissue (hemorrhage) that can cause stroke or brain damage.”

My AVM had been with me since birth, but no one had any idea it was there until it announced itself when I was 22; because I’d not had a reason to have any imaging on my head done until it bled, no one had seen it. It would need to be treated, which could be done with radiation, embolization (inserting a special glue into the AVM via a catheter through the arterial network), or craniotomy (open brain surgery), depending on the AVM’s size and position. I could get treatment in Vancouver or Toronto. I chose to go back to Ontario to be treated at the AVM Clinic at Toronto Western Hospital. After looking at my films, the surgical team determined that with a 4% (non-cumulative) chance of bleeding each year, my brain AVM would almost certainly bleed again, and might cause damage next time. Their recommendation was to try and reduce its size with an embolization, and to then remove it via craniotomy.

Which brings us to May 29, 2000. Seventeen years ago.

I remember the night after the embolization surgery, but the days after the craniotomy are fuzzy. I’ve captured some of my first memories in Finger Spelling.

I remember the seizure that accompanied the stroke, a couple of days after the craniotomy, but I don’t remember a moment where I woke up and thought, “I can’t move my left side.” It was more a gradual realization that this heaviness was real and not going away — the doctors were evaluating my level of paralysis, and physiotherapists were coming in and tossing my arm and leg around, and sometimes people would adjust my arm because I’d moved and it was pulling on my shoulder because it had stayed where it was…

I needed help to sit up in bed, and help to lie down.

I needed help to get dressed and undressed.

Walking was out of the question. While the team tried to stabilize my seizures with IV medications, I was bedridden; the few times nurses got me up to sit in a chair by the window, I was exhausted within minutes.

Because I was now forced to use my non-dominant arm and hand, everything I did was painfully slow and inelegant: brushing my hair and teeth, eating, writing (when it was vital for me to do it).

I was in the hospital five weeks, and then I went to an inpatient stroke rehabilitation hospital. The transfer there was so stressful that I spent most of the first day vomiting. I yelled at my night nurse to leave me alone, because I was never going to walk again. I don’t remember that; I was told later.

Seventeen Years Later

I used to remember November 7 and May 29 every year, but now they tend to slip by me, unnoticed. They’re two more days where I do what I do: go to work, feed my cats, work on my writing, watch Colbert (taped; I’m trying to go to bed earlier), fool around on Facebook…

Some people call the day they had their stroke their “re-birthday” but that’s never made much sense to me. Nothing about me died to be reborn the day I had my stroke except some brain cells. I guess in that way I’ve kind of rejected the recovery movement as well, because I see so many people waiting until they’re “better” to live again, instead of constructing a life that they want to live as they’re getting “better”.

Not that there’s nothing wrong with working to make your weak side as functional as possible after a stroke, especially now that we know that the window for regaining function is much bigger than previously thought — after all, I’m still seeing very small gains in my hand over a long-term basis. But imagine if I’d sat around and waited to be sure I’d gained as much as I could in my left hand before learning to do things with my right hand? I would not be:

  • Living independently — making my own (albeit simple, but that’s okay — simple meals can be nutritious) meals, doing my own laundry and grocery shopping, taking care of my cats, keeping track of my finances, doing simple housework (I do have someone help me with housework), managing my healthcare
  • Working part-time in the community and part-time as a self-employed individual.
  • Travelling on my own — as close as Toronto (4 hr bus ride), as far as Mississippi (5 hrs by plane with a stop in DC on the way over and Chicago on the way back) and out to BC and back again by plane. Further with people with me.
  • Educating myself — Finishing up my degree in Psychology, completing the Developmental Services Worker diploma on campus at Loyalist College, completing technical writing training by distance from Simon Fraser University
  • Advocating for myself and other disabled people as an internationally-known disability activist.

Life happens as recovery happens, so might as well get prepared as soon as possible.

Dealing with Challenges

I still definitely face challenges. I was very lucky in that not long after I felt able to work, I got a great part-time job in my field that I found enjoyable and fulfilling. But I lost the job after few years because of funding concerns. Work has been difficult to find with my disabilities, and always part-time and low-security. I started writing the Girl With the Cane blog during a particularly long stretch of unemployment.

I’m learning that as I approach middle age, I’m not as resilient as I once was. I fell last winter and fractured my kneecap and I’m still experiencing a lot of pain. Several months later, I still can’t walk nearly as much as I’ve been able to in the past, which is very frustrating; not being able to at least walk to and from town and work like I used to feels like a big blow to my independence. I ask for help with transportation much more than I used to. I had a major seizure last September after being seizure-free for a few years, so driving is a few years off even if I could afford a car.

Even after 17 years, asking for (and accepting) help doesn’t come easily, but I work at it.

Canadian and Privileged

Despite challenges, I feel lucky to live in Canada, where my medical treatment and rehabilitation didn’t put my family into major debt and where getting income support and help to pay for my medications as a disabled person who couldn’t work was relatively easy (compared to what I’ve heard it’s like in the US). These systems aren’t perfect and I’ve heard real horror stories, but I’ve been fortunate.

Privileged, even — I’m white, straight, cisgendered, and able to pay my bills, with affordable health care (including dental, medicine and eye exams) with the means to access it. My family is supportive and loving. I’ve only ever felt unsafe a very few times in my life.

I’m very fortunate, and I try to always remember this as I do what I can to make the world better for those that haven’t been as lucky as I have. Some days it doesn’t feel like I can do a whole lot, but sometimes you don’t need to do a whole lot to make a difference in someone’s life. So I do what I can and hope it’s enough.

I’m looking forward to forgetting May 29 next year. 🙂

 

Christmas 2016

A holiday greeting - the words "Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words.

Image Description: A holiday greeting – the words “Happy Holidays in red with cartoon sprigs of holly, holly berries, and mistletoe arranged around the words.

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I had hoped to find time to do a new Christmas post for this year…for a variety of reasons, I didn’t. In the past I’ve reblogged my 2014 post, “When Christmas Doesn’t Mean Family”, and I’ve decided to again, with apologies to those who have read it before. I read it it over and it reminded me of something that I’ve been thinking a lot about this Christmas season…that for all the fuss about whether it’s more appropriate to say “Merry Christmas” or “Happy Holidays”, either well-intentioned greeting makes a fundamental assumption that for some people there’s a hope in the universe of finding joy in late December and early January, whatever festival they celebrate or don’t celebrate.

For some people, for any number of reasons, the holidays just aren’t happy times. And it’s very difficult, when you feel like you’re just holding on, to find a place in society from November onward where it feels okay to say, “I’m feeling sad/angry/frightened/lost/hopeless/lonely/confused this Christmas. Not merry. Not happy. Not jolly. I am barely holding on and trying my hardest just to get through the holidays.”

I have had a couple of Christmases where I have felt like I was just holding on. To all the people who are feeling that way — you are not alone. It’s hard to believe when it feels like you’re the only one who can’t get hold of the Christmas spirit, but there are so many more people than anyone thinks who dread this time of year.

And if you start to doubt that you can get through it, you need to reach out to the people that want to help you — even if you feel like there’s no one in your life in your life that will listen, you can always call a help line…click here to find the suicide hotlines that operate in your country.

You can get through this. Please reach out for help if you need it.

May we all experience the joy and peace of the season, this Christmas and throughout the year.

Here is “When Christmas Doesn’t Mean Family”

In the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family…didn’t I agree?

I nodded, because it seemed expected of me, but the question irked me. I’m not sure why I’ve felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won’t. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that’s not always the case.

When Your Family Has Forgotten You — Or Doesn’t Even Know You

When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn’t have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn’t be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes — they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. “Show me the families that will do this,” I said, Sometimes I still say this, when I hear people suggest that the government shouldn’t be caring for disabled people, but that volunteers and churches should be doing it — “Show me the families”.

“Show me the families that will do this,” I said to my professors, “and tell me what’s wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,”

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty’s position that day — and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you’re at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you’d suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that’s an assumption on my part. I’ve never asked anyone about this.)

And it’s not really the point, anyway.

Christmas Isn’t Just for People with Family

My family used to have Ivy over at Christmas (we don’t now, for a variety of reasons), but Ivy is my very special friend and we didn’t think anything of it. I believe that we were an exception. There’s still a perception out there among people that don’t have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn’t institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren’t fully integrated. Friendships with the “normals” don’t come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren’t. And, of course, this isn’t the only group in society with some members that may not have family with which they can spend Christmas, or who just can’t, as much as they’d like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you’re spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you’re alone, whether it’s by circumstance or choice, merry Christmas and all the best of the new year to you as well…the joy of this season isn’t just for those who are surrounded by family, and I hope it finds you well.

Gathering My Thoughts

Yesterday I was checking Twitter all day, keeping up with how the story around the shooting of Alton Sterling in Baton Rouge was developing. And last night I was profoundly affected by the video of the shooting death of Philando Castile in front of his girlfriend and small child.

I know that as a white person, I will never truly understand how difficult these past two days have been for the black population of America, and I’m grappling with how to write how these events have affected me while being the most respectful and sensitive that I can to black people who are truly hurting.

It may take me some time to figure out how to do this…I may write about other things as I think about what I want to say…but know that I am trying to listen, and stay present, and learn, because I *am* privileged and sometimes I don’t know what I don’t know…

I am trying to work my way through some things that I need to, without making what happened about me.

I am really just trying to become the best person that I can in an ugly world where there aren’t many answers. I don’t always know how to do that, but I really do want to…let’s be patient with each other.

Assisted Death and Mental Health – An Unnamed Woman’s Story

Trigger Warning for Suicide, sexual abuse, assisted suicide, euthanasia

caution tape on black background - assisted suicideThe Dutch Euthanasia Commission recently revealed that last year, in the Netherlands, an unnamed woman was granted a death by euthanasia because of suffering brought on by a mental health condition. For people outside the Netherlands, where the debate about assisted death for people with mental conditions is just beginning, it’s a controversial story.

The young lady in question was 22 years old. She’d been sexually abused from age 5 to 15. Metro UK reports that she had “Post Traumatic Stress Disorder, chronic depression and severe anorexia” and “hallucinations and compulsions.” Doctors declared her mental health conditions “incurable”, and the suffering that they caused her “unbearable”, and on this basis she was granted the right to the death by euthanasia that she requested.

There’s a lot to unpack here. I understand why, in light of what we know about this young woman’s condition, suicide looked like an option for her. I don’t understand why she was granted an assisted death and I’m not sure that I agree, based on the information that I’ve been able to find, that she should have gotten one.

“Assisted Death”, “Assisted Suicide”, and “Euthanasia”

Let’s get a matter of terminology out of the way. I will use “assisted death” in my discussion in this piece because while we tend to use “assisted suicide” as a catch-all for several types of death in which a doctor is involved, in the Netherlands it has a particular meaning and isn’t interchangeable with “euthanasia”.  In Dutch law, a physician prepares a lethal injection for an “assisted suicide” but does not administer it.  The physician administers the injection during “euthanasia”. Media sources are quite clear that that this young woman was euthanized.  I think it’s important, for clarity, to use a third term to speak generally about the assisted death debate…on the one hand.

On the other hand, for the purposes of this discussion, the distinction doesn’t really matter: the fact that any kind of assisted death was approved for a chronic psychiatric condition is dicey even in the Netherlands. It requires evaluation by two specialists, one of whom must be a psychiatrist, and both of whom must agree that the applicant is “incurable” and experiencing “unbearable suffering.” Dutch doctors are somewhat reluctant to make these declarations about mental conditions. (Pg 14)

So there’s *that*.

Thoughts on Suicide Generally and Assisted Death Particularly

I don’t like the idea of people committing suicide, of course, but, bodily autonomy – you have a right to do what you want to your body, regardless of how I feel about it. I’ve been suicidal. I don’t think that I truly wanted to die, just as I think that most people considering suicide don’t truly want to die. I think that they’re people in tremendous pain that want it to stop and that suicide sometimes looks like the only option. That’s part of what makes suicide so sad – if you take that option, not aware that there are there are others, or that you can access others, or lacking confidence in your ability to use other options, you can’t change your mind.

But I also think that there’s a very small number of people who have truly decided that they want to die, who have thought it through with a clear head and who fully understand the consequences, and whose unclouded reasoning shows when evaluated by professionals. They want a dignified death that’s under their control, perhaps with loved ones around them, where they don’t have worry about something going wrong and loved ones being traumatized beyond the grief of the death itself. I can respect that. I support that. I think that there needs to be safeguards around the right to access it, but I think that the access should be there.

People who request an assisted death are generally terminally ill, but not always.

They don’t have to be in the Netherlands.

They won’t have to be in Canada, if the legislation proposed in 2015 is passed as presented.

This woman wasn’t, although she may have died eventually if she’d not found a way to manage her anorexia.

Cause for Caution

There are good reasons to consider assisted death legislation that doesn’t have terminal illness as a criteria, but these are good reasons to  approach it cautiously, too.  Three major concerns come out of this story for me:

  1. Granting assisted death on these declarations sets a dangerous precedent, not just for people with mental conditions, but for disabled people in general. Many  disabled people are (rightfully) concerned about assisted death legislation and the potential for people to make assisted death decisions of behalf of disabled people based on perceptions of what living as a disabled person must be like. What if this young woman had not sought an assisted death, but had ended up in the hospital because of the anorexia, and doctors had deemed her “incurable” and her suffering “unbearable” and put a DNR on her? It could happen.
  2. I was an emotional mess to varying degrees until my early twenties, and then things started to turn around with the right meds and good therapy on a regular basis, even as I was getting used to being disabled – I’m uncomfortable with doctors throwing around the word “incurable” for a 22-year-old, especially since she’d experienced temporary improvement with intensive therapy. And I’m not a certified counselor, but I know women and men who experienced long-term sexual abuse in childhood. After a lot of therapy and hard work they haven’t forgotten, but are able to live with it as they go about their full, fulfilling lives. What a tragedy if, still in the thick of it at the young age of 22, they’d asked for an assisted death and a doctor had deemed them “incurable”!
  3. I was anorexic and severely depressed when I a teenager, and I remember my thought processes at the time. I couldn’t trust my perceptions on anything, not just because of the lens of  body dysmorphia and depression through which I viewed everything, but because my body was just so malnourished. I  can believe that this woman had convinced herself that she wanted to die and that she maybe even could have presented some cogent-sounding arguments in favour of giving her an assisted death. But do I believe that someone with  active PTSD, severe anorexia, depression, compulsions, and hallucinations was able to look clearly and objectively about whether she truly wanted to die? I wasn’t there, I didn’t talk to her, I’m not a doctor. I’m not saying she couldn’t. But I think that it’s reasonable to question whether she really could.

However.

When Treatment Doesn’t Work

Again, I didn’t know this girl. I don’t know what she went through in those 10 years. I don’t know what kind of work she did to get better since the abuse ended. Maybe she tried every kind of therapy she could get her hands on, and nothing made any lasting difference.

I do know that for some people, drugs and therapy don’t work for depression. They try drug after drug, and they keep trying new therapists, trying to find one that they click with, and some even try electroshock therapy, and nothing makes a difference. I imagine myself at my worse, depression-wise, trying everything that I can, and feeling more and more discouraged when nothing seems to work…that would literally be hell on earth. Add PTSD to that, and the physical problems that anorexia causes, and I get it. I get what she’d ask for something drastic.  I won’t – I can’t – judge her asking.

Again, Caution

But the fact that she was deemed “incurable” at a very young 22 years when there still could have been so much about her state of mind influencing that decision and she *had* shown some improvement relatively recently makes me think that it was too early to give her what she wanted. And it’s cemented for me the vague feeling of discomfort that I’ve had around the legislation in Canada’s assisted death law, that allows people to make a request based on mental health conditions.

I’m not well when I’m deeply depressed. I can’t trust what my brain is telling me about my life. I need laws (and people that work with them) that work as much as possible with my survival instincts in those times, not against them.

To be clear: I am not suggesting that people with mental conditions lack the capability or capacity to make important life decisions, even when feeling very unwell. That is simply untrue. Each case is individual, and I can only speak for myself. I am just calling for caution. When it comes to assisted death, we need to proceed with caution, and make sure that everyone who needs protection is protected – including the people that may need protection from themselves.

FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!" Keyword: Judge Rotenberg Centre

Image Description: “JRC” in navy letters behind a red circle with a slash through it. Underneath. in black letters: “STOP The Torture! Close It!”

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Two years after a federal advisory panel met to discuss the Judge Rotenber Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices.

This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting for. The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undersired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

10 Days

 

Doodle 10 anniversary chalk mark on spiral notebook page isolated on white background

The blog has been down for 10 days. When I typed “girlwiththecane.com” into my URL bar and my site actually came up, I almost cried.

I never knew how important this blog, that I’ve spent 5 years building, was to me…until I was practically sure it was gone.

I’m sorry to everyone who’s come looking for me in the past 10 days, only to have it look like I disappeared.

Thank you to whomever I spoke to in Tech Support on the phone today who finally got things moving and made things right again. It only took 14 phone calls and over 15 hours on the phone with your department in the last 10 days.

I’m so glad to be back. Have a great weekend.

 

Administrative Note

GwtC-LOGOSome time in the next few days (probably over the weekend) I’ll be moving the blog over from this self-hosted domain to Blogspot.

I’m taking the domain with me, so once I’ve pointed the domain to where I’ve copied all my content and the little Internet elves have had time to make the changes, you’ll still be able to access the blog at girlwiththecane.com.

But if for whatever reason a long period of time goes by where you can’t access the blog as usual, you will still be able to able to access all posts at http://girlwiththecane.blogspot.ca/.

Keep watching Twitter and the Facebook page for updates!

See you soon over at Blogspot!

Tomorrow is “Bell Let’s Talk” Day

Bell Let's TalkI’m going to put in a plug for Bell Let’s Talk Day tomorrow because…this is my blog, and I can. 🙂

And it’s a cause near and dear to my heart. Bell Let’s Talk is a charitable initiative spearheaded by Bell Canada to support mental health organizations in Canada. Its goals are to reduce stigma, increase care and access, support the mental health of its own employees and show organizations how to do the same, and to invest in research.

As someone who quite possibly wouldn’t be here without access to professional mental health services when I was at the lowest points of my lifelong struggle with chronic depression and obsessive compulsive disorder, I wish for everyone that they had the opportunities for healing that I did. Even the therapists that I cursed on a regular basis pulled me through, I see now. And while I’ve been fortunate enough not to experience a huge amount of stigma because of mental health diagnoses, I certainly know that it exists. I know that stigma is a huge problem.

I support any initiative that increases access and decreases stigma for people with a mental health diagnosis.

Bell Let’s Talk Day – January 27, 2016

Bell has already committed $100 million in funding. However (from website):

“On Bell Let’s Talk Day, for every text message, wireless and long distance call made by Bell Canada and Bell Aliant customers, every tweet using #BellLetsTalk, and every Facebook share of tomorrow’s Bell Let’s Talk Day image at Facebook.com/BellLetsTalk, Bell will donate 5 cents more to Canadian mental health programs.

Bell’s donations are made at no extra charge to Bell Let’s Talk Day participants, though normal long distance or text charges, if any, apply. To learn more about the campaign, or to download the Bell Let’s Talk toolkit and help get the conversation started, please visit Bell.ca/LetsTalk.

Thanks to the response on Bell Let’s Talk Day 2015, Bell committed a further $6,107,538.60 in funding for Canadian mental health – bringing the Bell Let’s Talk total to $73,623,413.80.”

Bell Let’s Talk – Add Your Voice!

Please support Canadian mental programs tomorrow (January 27) and be sure to check out the Bell Let’s Talk website to see the work that Bell Let’s Talk has supported since 2011, a list of Canadian resources, and 5 simple ways to help end the stigma around mental illness! Thanks!

My AVM Story: Back to Physiotherapy

Bar track walk physiotherapy unit for rehabilitation
Bar track walk physiotherapy unit for rehabilitation

I thought that it was probably time to post an update on the chronic pain that I’ve been having in my left leg (my weak leg) since last January. After an MRI showed that there was nothing in my thigh that should be causing any pain, and my GP admitted that she was stumped, we decided to do what we probably just should have done in the first place: have a physiotherapist investigate.

Back to Physio

There are a number of physiotherapists in my town, but physiotherapy through the hospital is covered under the province’s medical program. There’s a waiting list, of course, but my leg wasn’t really bothering me at the time, so being on a list wasn’t a hardship. My name came up about a month ago for a block of appointments, and I’ve now been to three sessions.

Some background: I still fall every now and then, especially in winter when snow and ice make the sidewalks difficult to navigate. Generally, I’m much more likely to fall when I’m tired because my toe tends to drop on my weak leg and I’m not as careful about making sure that I lift my leg enough that it clears the ground. When my toe catches the ground, I pitch forward, and when I can’t right myself in time, I fall. Other stroke survivors will know what I’m talking about.

I don’t think much about it when I fall because I usually don’t hurt myself, I’m able to get up without assistance, and I just continue on. The people around me are much more upset than I am.

In fact, until my new PT started talking to me about falling during my first session with her, I had totally forgotten that last year, at New Year’s, I slipped on an icy patch in Dad’s driveway and fell. By moving my muscles and figuring out what hurt, she was able to figure out that it was likely this fall that had damaged my leg and that was causing the muscles to be so irritated now. She gave me some exercises to do at home and said that we’d talk more on my next visit.

The exercises helped, and she assigned some more the next week. But she had some other physiotherapy goals in me.

Surprise! I Need to Learn How to Walk.

She had me do what she called “squat walks” on a bar track walk unit (see picture), so that I could support myself using my right hand. She wanted me to have both legs slightly bent at all times. And she wanted me to walk putting my left foot on the ground heel-to-toe, not trying to bring it out-and-around to avoid catching my toe.

Heel-to-toe is how non-strokies walk, apparently.

She told me later that I had a death grip on the rail during that first walking session, because squat-walks involve putting much more weight on my weak side than I’m used to. Apparently I don’t put much weight on my left side, even after 15 years, because my brain still tells me that my left side is unstable and that I will fall, even though my left side can take much more weight than I believe.

So I can actually walk in a much more of a balanced way. I’ve just never tried to do so, because my brain’s been telling me that I’ll fall (not that I’m conscious of this; I just try something, feel waaaaay too off-balance and stop).

During our next session, she added having me walk backwards, toe-to-heel. *This* was hard. I’d get my heel back and my toe on the ground…and instead of being able to put my heel flat on the group, like my PT instructed, my heel would turn out, away from my body, and I couldn’t get it to turn back. This has gotten easier, but it reminds me of the time in my post-stroke Saturday morning ballet class when I raised my left foot to do the demonstrated barre combination…and it just sat there, raised.  It was like I’d overloaded the neural pathways to the point where even moving wasn’t an option anymore.

My PT and I have talked about how rehab right after a stroke is about getting people minimally functional again. The people at Penetanguishene General Hospital were happy that I got any function back in my weak arm at all. They weren’t disappointed that they couldn’t get my hand to lay flat in the (brief, in the grand scale of things) time that I was there.  I walked out of Ottawa Rehab Centre using a straight cane, and people had done as much balance work with me as they could in the (again, relatively brief) time I was there, but we didn’t work on the finer things that we’ve talked about in this run of physio:

  • How people move their hips when they walk
  • How wide people place their feet when they walk
  • How people do everything involved with walking without looking at their feet to make sure that they’re doing it properly

There’s much more to walking than we think, and my PT said to me, “Babies do it all naturally. But when you’re older, you need to learn it all.”

A Thought About Stroke and Recovery Time Limits

I’ve never really thought, despite what I’ve read over the years, that there’s a concrete time cap on recovering function after a stroke.  My PT has confirmed that the period is much longer than anyone has previously thought, and that’s good to know. I’m fine with myself any way that I am.  But it’s nice to know that 1) My body and brain are capable of more than I thought of and 2) There are things that I can do at home, once this run of physio ends, to keep seeing how far I can get. There are even rails on the walls in my apartment building to use.

And hopefully my leg won’t give me the trouble that it did last winter.

General Notes

Work has been very busy lately so I haven’t been able to be here as much as I’d like. But here are some things that are in the hopper:

A blog on the inquest into Connor “LB” Sparrowhawk’s death.It’s important to me that I do a really good job on this one, so I’m taking my time and trying to think what the best way is to to talk about my feelings on this. But it is forthcoming.

Internalized Ableism Sparked by a discussion with reader Shannon Barnes, I’m trying to put together my thoughts about how damaging it can be when people that society is encouraged to regard as role models when it comes to disability advocacy have ableist attitudes…especially ones that insist on airing these attitudes publicly.