Tag Archives | welfare benefit reform

Happy Thanksgiving?

I wanted to write a post about how one of the things that I’m grateful for thisthanksgiving Thanksgiving is how far people with disabilities have come. But I didn’t quite get there.

Happy Thanksgiving…*sigh*

I was going to start my Thanksgiving post off with this:

“On Thanksgiving Sunday, my father and I watched “The King’s Speech” together. My father told me that King George VI had a younger brother, John, who was basically kept in isolation from not only the public, but from the family’s day-to-day life because of epilepsy and perhaps autism.  His mother visited him often, and he had a cottage and a full staff of his own, but he was kept out of the public eye and court life because he was “different”. Segregating a child from the public eye that way seems as alien an approach to dealing with disability to me as shutting a child with a disability in an institution and forgetting that they exist…or, as a health care professional, suggesting to parents that it’s in everyone’s best interest to do that.”

I wanted to suggest, in my Happy Thanksgiving post,  that we’ve come oh-so-far since then, with so much success in closing institutions and people with disabilities being treated so much better by the medical community. But then I remembered the posts that I’ve written about discrimination in granting organ transplants, the attitude that some of the medical establishment holds that babies with Down’s Syndrome should be aborted or denied life-saving treatment after birth, and the recent story out of England about the man with an intellectual disability who found a DNR that he’d not consented to in his suitcase when he returned home from a hospital. I remembered the conversations that I’ve had with colleagues about how group homes are really just little institutions, where abuse can happen just as easily as it did in the larger ones that people fought so hard to close.

I remembered that for several years after my stroke, there wasn’t a truly accessible restaurant in my town, and that legislation mandating that government buildings become accessible in my province was enacted only in 2005. Right now, an overhaul of the main street in my town has the sidewalks torn up on both sides, making passage practically impossible for anyone using a manual wheelchair and difficult for anyone with any sort of mobility or balance disability. No one thought of this, apparently, or cared enough in their hurry to get the job done to consider that they should only tear up one side of the street at the time.

I remembered that Henry Miles Frost has been petitioning since before school started to go to the school that’s just down the street from him instead of a special school somewhere else. Despite all of the people that stand with Henry, the school board won’t be convinced. http://www.facebook.com/IStandWithHenry?fref=ts

I remembered Britain, and how people with disabilities have been struggling there the past year as their benefits have been slashed.

What do you do when it’s difficult to remember the positives?

Happy Thanksgiving. Sorry I’m late…

By the way, Prince John died when he was 13. This blog post talks about his story in more detail: http://www.sockitmama.com/2011/04


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Rest in Peace, Karen Sherlock

In Britain, a disability campaigner and member of the Spartacus group fighting so karen sherlockhard against the current round of cuts in disability supports, has died.  Her name was Karen Sherlock.

Rest in Peace, Karen Sherlock

Diabetic since childhood, Karen Sherlock’s health had deteriorated in the last few years to the point where she was basically housebound. She had serious kidney disease, and was in constant pain. She was also no longer control her bowels, and often suffered bouts of uncontrollable vomiting. Only partially sighted due to the diabetes, she had stopped using the stairs out of fear of falling, and greatly curtailed her activities in kitchen out of fear of hurting herself on the stove or with a knife.  Asthma, a heart condition, vitamin B12 deficiency, anaemia, high blood pressure, high cholesterol,high blood pressure, and an underactive thyroid combined with her other conditions to leave her constantly fatigued. On June 8, it’s suspected that Karen Sherlock had a heart attack, and the activist so beloved to the Spartacus community died.

To have to live in such pain and discomfort for the last few years of one’s life would be bad enough. Karen Sherlock had significant stress added to her life by worries that, even though she was declared unable to work in 2008, she’d eventually lose her Employment and Support allowance. You can read about these worries in Karen Sherlock’s own words, in this blog:


Sue Marsh explains why losing a support like the Employment and Support Allowance is something that so many people in Britain with disabilities in Britain are fearing right now:


Karen Sherlock fought hard to keep her support, and was told that a ruling had been made in her favour on May 31st…just a little over a week before she died.

Many things jumped out at me as I read her words about her situation, but this was one of the things that jumped out the most:

“So, what happens next is anyone’s guess, but none of us are devoid of disability striking us at any age or walk in life. A sudden accident that takes away our sight, or our ability to walk, talk or use our arms and legs. An incurable disease that will cause our health to deteriorate so that we cannot function. If this happened to any of the government members, what would they do if they were told, “you’ve got to have an Atos medical.” Or, “off down the JobCentre you go because you can still work of course, Atos said so?” How would that change their lives and the impact it has on everything they do every single second of their living lives?

The trouble is the government do not seem to be able to see this in their blinkered lives and opinions.”

My condolences to all who knew and loved Karen Sherlock. May she rest in peace.

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How An Activist is Born

On “Ramblings of a Fibro Fogged Mind”, a blog by my new friend Ravenswyrd, I read a post calledactivist “How is an Activist Born”. She talked about how she’d been moved to activism by the release of the Spartacus Report in Britain, a response to the austerity cuts and proposed welfare benefit reform. Disheartened by her own experiences with the disability support system in Britain and concerned about the direction in which it was heading, she become involved with the Spartacus group herself, working alongside other campaigners to get accurate information out to the public and to protest what has become a very scary situation for people with disabilities in Britain.

It got me started thinking about when the activist in me was born.

Quiet, Non-Confrontational Girl Becomes Volunteer

I didn’t get started in the field thinking that I wanted to be an activist. I was a high school student looking for volunteer work that would look good on my resume (I wanted to be a social worker when I grew up, that year). An opportunity with an agency that supported people with intellectual disabilities came up, and they seemed willing to have me, so I went with it.

And I enjoyed it. I liked the people that the agency supported. I liked the staff. I made some terrific friends among both groups. It was pretty fun, as far as volunteer work goes, though I wasn’t so naive that I didn’t know that working in developmental services wasn’t a field fraught with difficult issues and difficult questions and sometimes things that were difficult to face.  I just didn’t give them a whole lot of thought at the beginning.

Then, one day, I was walking in town with Beth, one of the women that the agency supported at the time. We walked toward a group of teens sitting on a bench, and I noticed by the way the she started twisting her fingers that she was anxious about something. As we passed the teens, one of them said, “Hi, Henry.” The others jeered.

Good one, I thought, rolling my eyes. I didn’t quite understand the joke, but presumed that they just thought it was funny to call her by the name of another client. Implying that all people with disabilities look the same, so it’s okay to call them all by one name?

I shook my head. Far too sophisticated for that bunch, I thought.

In the meantime, Beth had started to cry. We went to a bench and sat down, and talked about what was wrong. The teens calling her the wrong name had really upset her, and apparently it wasn’t the first time it had happened.

Volunteer Becomes Activist

I was angry. I didn’t like that she had just been walking down the street and someone had upset her enough to make her cry, for no apparent reason. I didn’t like that they’d taken pleasure in it. I didn’t like that it had happened before. I was still pretty quiet and mousy at that point in my life, but anyone who’s known a quiet, mousy person will tell you that we’re the ones that you really don’t want to get angry.

I told Beth that I’d be right back, and I walked back to the bench where the teens were.

“You called my friend by the wrong name and you made her cry,” I said, interrupting their conversation.  They stared at me.

“The one sitting over there,” I said, pointing. “Her name’s not Henry. It’s Beth. You call her Beth the next time you see her. Don’t ever let me see you make her cry again.” I turned and walked away.

For a kid who would rather have set herself on fire than directly confront someone, it was a pretty gutsy move.  I think it was really the spark of that “This isn’t fair and I want to change it,” fire in me.  It took a while for that spark to get going full-force, though.

I want to thank the people who nurtured it along. They know who they are.

Do you consider yourself an activist for any cause? What or who led you to become one?

“How An Activist is Born” – Ramblings of a Fibro Fogged Mind: http://ramblingsofafibrofoggedmind.wordpress.com/2012/04/28/how-is-an-activist-born/



Image credit: stuartphoto / 123RF Stock Photo

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John Kerr: Benefits Cut, Fit to Work?

And so it begins in Britain. John Kerr of Dundee, Scotland, who is blind, deaf, eats via tube, and doesn’t communicate verbally will have his benefits cut on June 7th because the person who filled out forms on his behalf that the Department of Works John Kerrand Pensions required made an error.  I don’t know what forms, or the nature of the error; media coverage on this over the Internet is scarce. According to disability blogger and advocate Nicky Clark, however, the form was substantial (over 30 pages), and Kerr’s options now are either to find employment or go through an appeals process to attempt to get his benefits reinstated.


Waiting on John Kerr Details

I admit that I’ve known about John Kerr and his story story since last Friday and held off on blogging about it. I’ve wanted to see what the Department of Works and Pensions would do.  I’ve seen the Ontario Disability Support Program send letters saying that income supports have been cut off because the recipient hasn’t provided requested information, and that they can appeal the decision; often a phone call to the intake worker assuring them that the requested information is indeed on its way is enough to get the suspension reversed before the next cheque is issued (depending on the date and the information required). But according to Nicky Clark, this error is going to take weeks to rectify, potentially leaving John Kerr and his caregivers in a very bad financial situation.

Who’s to Blame for What’s Happened to John Kerr?

I’ve seen arguments that the people who filled out the form for John Kerr need to lie in the bed that they’ve made regarding his benefits cut. After all, the government can’t be held responsible if someone makes a mistake and creates a situation like this, whether they intended to or not, they argue.

My technical writing training tells me otherwise. If these forms are so unclear that someone could make a mistake so crucial that it costs them their benefits, then they’re not well-designed enough. The design flaw could be a number of things (or many of them):

  • It’s not clear on the form what the response process needs to be. Where does the form need to go? By what date? Addressed to whom?
  • It’s not clear how to respond to respond to the questions.  On scale questions, which end of the scale is most severe, and which is least severe?  What if two answers apply to a given question? Can you attach paper if you need more than the allotted space to comment?
  • The questions themselves are unclear.  What if you have a learning disorder and you’re unsure to whom you should go for help? What about people with low literacy levels?
  • It’s unclear how crucial accuracy is. Clearly it was for this particular form.

Obviously a form can’t be developed that meets absolutely everyone’s needs, but there *is* a process by which technical writers try to make documents as accessible to as many people as possible. Government forms aren’t particularly user-friendly (as I’m sure all of you know), which is why I used to spend a lot of time with people I supported and their families assisting them to fill out forms – precisely so this sort of thing didn’t happen. Not that I’m perfect and don’t make mistakes, but I’ve filled out a lot of the forms now and find them a lot less terrifying than people I worked with and their families did.

No One Should Live in Fear of Losing Benefits Over One Mistake On a Form

Or two…or three. This story and its suggestion that you have to be a robot who doesn’t make mistakes instead of a human being who may be dealing with multiple challenges as you fill out a large government form suggests to me that this is just another way that Britain is experimenting with thinning the ranks of people on benefits. It’s underhanded and insidious, as many people (like John Kerr) do need substantial assistance filling out the forms, and are powerless as to whether it’s submitted with mistakes or not.

And it’s just plain not right.

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Disability Living Allowance Cuts in Britain

As I’ve said before in this space, I blog about the welfare benefit reform and the austerity measures in Britain because, as a Canadian citizen, they deeply concern me.  I worry aboutdisability living allowance what’s going to happen to friends in Britain who have disabilities and rely on benefits like the Disability Living Allowance to help with the costs of the specialized equipment and attendant care that they need to continue to live in their homes. I also worry about the anti-disability rhetoric surrounding welfare benefit reform, because I hear it in Canada and the US, too. I’ve wondered if one of those countries will be next to make disastrous cuts to disability supports.

Disability Living Allowance Cuts

The Disability Living Allowance cuts and the anti-disability rhetoric reached an all-time high in Britain this week. On Monday, 500 000 people (1in 5 claimants) have started to live in fear of having their Disability Living Allowance cut off, including veterans. They may not be eligible for the stripped-down benefits program that will eventually replace the Disability Living Allowance, the Personal Independence Payments.  All people on Disability Living Allowance will be reevaluated before seeing if will receive Personal Independence Payments, as one of Secretary for Ministry of Works and Pensions Iain Duncan Cameron’s problems with the system is that people are given “lifetime awards” for Disability Living Allowance. and never reevaluated, allowing them to “fester”.  He blames this as one of the reasons that the number of Disability Living Allowance benefits claimants has risen 30% in the “past few years”.


Amelia Gentleman of “The Guardian” reports that disability advocacy groups believe that the 30% rise is for different reasons, and points to remarks (not made in the article, but that I have I’ve read before) that Duncan Cameron’s changes are to eliminate benefit fraud. The British government itself acknowledges that Disability Living Allowance Fraud is at 0.5, so substantially cutting or eliminating the benefits of 30% of the claimants seems excessive.


Anti-Disability Rhetoric

However, if you look at articles like this, you can see where people might get the idea that people with disabilities are just vindictive bullies out to get everything they can from whoever they can.  And that if you look like a disability, you might just be pretending to get off work:


A couple of notes on Odones’ article:

  • Those PETA-esque protest tactics (the fake blood, etc.) have apparently not been used by Hardest Hit since the ’90s.
  • What is Odones’ definition of “fraud”? Does it include an alcoholic or a drug addict? If so, is it going to include a person who has committed a crime while in a manic state? When did disability become about morality and who made Odone the judge and jury?
  • As far as I’m concerned, if you want to chain your wheelchair to public property, it’s as legitimate a form of protest as any. It’s not “bullying”, and it certainly doesn’t make you a member “powerful and extremist lobby”.

And if Christine Odone has witnessed people with disabilities “fighting dirty” – it’s because they’ve had to.  Because no one else will listen otherwise, and because it’s our independence…our lives…at stake. She would fight too.

Thank you to Sue and and all the people using so many of their spoons to work so hard against what’s happening in Britain. You all inspire me. :)

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Musings About “Inspiration Porn”…

This week, I was introduced to a interesting concept by tumblr bloggers thoughts_of_nothing and and gimpunk some other tumblr bloggers with disabilities about which I’ve never heard: “inspiration porn”. It all focused around this picture, which I’m sure many readers have come across if they’ve spent any time on Facebook or Pinterest:

inspiration porn

Heck, it was on one of Running Steps’ Pinterest boards when I went to check. I’ve since removed it.  It had just never occurred to me that I should find it insulting – but I should have.  I’m going to be evaluating what I put up on the Pinterest boards much more closely from now on, to see if the pins fall into that “inspiration porn” category.

“Inspiration Porn”: Is the Label Fair? The Case Against

It’s not that Scott Hamilton (and Oscar Pistorius, the athlete in the picture) hasn’t accomplished amazing things. And the value of that particular piece of photography for people with disabilities is that it encourages those who may have the resources to take life by the horns, as Hamilton did, but are letting “I can’t, because I have a disability” hold them back to get back out there and start saying, “I can,” again.

“Inspiration Porn” Is the Label Fair? The Case For

Not everyone with disabilities has the resources and supports that Scott Hamilton had/has to get out there and make their dreams a reality. And for those that are in that boat – sometimes a positive attitude just isn’t enough. A positive attitude isn’t stopping the British government from people whose disabilities are far too severe to allow them to work from having their benefits cut off, forcing them to look for jobs that they have no hope of getting when they are in such ill health. Closer to home (for me), cuts to the Ontario Disability Support Program make accessing its Income support component significantly and increasingly difficult for new applicants each year, and cuts to both the Income Support and Employment Support programs make it more and more difficult for people who are on the program to move off of it.

All of this as the unemployment rate for people with disabilities in the United States edges toward almost twice the rate for people without disabilities, and as New York City continues to put up stink about making even more than 1% of its taxis accessible.

Given these realities, slogans like, “The only disability is a bad attitude” are almost an affront. “Inspiration porn” only makes people with disabilities who are often trying very hard to cope with issues like chronic physical/mental/emotional pain, constant hospitalizations, fears about where the money to pay for housing/food/medical bills/their family’s needs is coming from (whether it’s because of unemployment or underemployment or income support cuts) feel badly because they can’t muster the support, strength, or enthusiasm to get out there and start living their dreams as people with disabilities.

So, is the “inspiration porn” label fair? Unfair? Somewhere in-between? I think I may need to think about it a bit more. It’s certainly an attention-getter, and it’s probably going to make my blog show up in more porn-related searches than usual, but I think I’ll let you decide from here.

Before I Get Attacked

I don’t think any of that means that Scott Hamilton should stop doing what he does. It’s not his fault that people are struggling. And, like I said, I think his message has a place. Not just for people with disabilities, but for everyone. Regardless of your life circumstances, a bad attitude will get *anyone* stuck like nothing else can.

But I do understand why some people with disabilities take have adopted the phrase “inspiration porn” for these kinds of images, and why it hits them particularly hard.

I need to think about this, and write some more about it. Have a great weekend, everyone.

thoughts_of_nothing’s blog about “inspiration porn”: http://thoughts-of-nothing.tumblr.com/post/22192050450/blogging-against-disablism-day


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Meanwhile, Back in Britain…

This is just heartbreaking.


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A Bit of a Feminist Rant for a Friday, and Why I Now Feel Better


For David, Marc, Marsha, and Tracy…and Phil Rockstroh

A Very Good Day

In many ways, yesterday was a very good day.

The business that I’ve just opened, Running Steps, (http://www.runningsteps.ca/) is being very well-received. I got some very positive feedback yesterday on my website, and I may already have a small writing job. Talking about my business on Facebook has put me in touch with some old friends to whom I haven’t spoken in years, and doing some other marketing has brought some new friends into my life.

I had a very enjoyable lunch with my father and I got some adorable pictures from my sister of my now seven-month-old niece, Gillian. I know that I’m biased, but I think that she might just possibly be the most adorable baby ever:

And Yet… (Here Comes the Feminist Rant)

I did get myself good and upset, however, about some of what’s going on in America (from a feminist standpoint).  Romney’s sudden decision this week that he would get rid of Planned Parenthood as President, coupled with a bill in Arizona proposing that employers have the right to require female employees to prove that they’re not using birth control for sex before covering it under health plans, left me feeling sad and angry and…raw. It seems like a feminist nightmare. I don’t want my niece and the young girls that I’ve worked with in my career worked with growing up in a world where the most powerful nation in the world feels that women’s sexuality is something to be controlled, and where their bodies are war zones. I don’t want that trend spreading to Canada. Like the commentary I wrote on Britain’s Welfare Benefit Reform legislation, none of this affects me as a Canadian – except that it does.

Thankfully, I have friends, both male and female, that eventually talked me down from the shaking, teary mess that threatened to overwhelm me several times during the day.
And eventually I found something, from brilliant essayist Phil Rockstroh, that spoke to me as disability advocate, a feminist…and just as a person:


My take-away from this essay was the following, and it’s something that I think I’ll come back to again and again…especially on days where I feel powerless, or where I feel like my small efforts to make a difference in this world make no difference at all:

“How then is it possible to withstand feelings of powerlessness? Put one foot in front of the other. Write one word after the next on your protest sign. Make your life a flaming arrow aimed at the dry and rotted heart of the system or make your own heart a warm hearth of compassion for its victims, as you negotiate its cold realities. Thus, hope becomes a process of engagement, not a comforting lie; not the stuff of public relations hustlers and political hacks but a quality of honest conviction and persistent labor; and not a cynical marketing tool.”

Thank you, Mr. Rockstroh. I needed that.

Happy Friday

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Welfare Benefit Reform and a Sad Day in Britain

I wanted to blog today, but I really wasn’t sure what I’d blog about – no topics were

welfare benefit reform

springing to mind. So I went to Twitter and went through my Twitter feed, to see what’s going on in the world of disabilities.  I was shocked, and saddened, to see that the Welfare Reform Bill in Britain that so many people have been fighting so hard to have the government reconsider, passed yesterday.

How Will Welfare Benefit Reform Affect People with Disabilities in Britain?

The new legislation introduces benefit caps, will cause many people with disabilities to lose their benefits, and will push people with disabilities and their families further into poverty across the UK.

The government claims that Welfare Benefit Reform will give people with disabilities more opportunities to become independent from the system, but groups across the UK have concerns:

Church leaders in Ireland: “Those with the least capacity to suffer cuts should not be made to suffer more:  http://www.u.tv/Articles/Article.aspx?guid=58b137e2-4f0f-4315-804e-c5712d168345

“Benefit reform could put ‘6000 children into poverty'” – Wales: http://www.bbc.co.uk/news/uk-wales-politics-17182494

For a graphic description of what disability advocate Sue Marsh’s life will be like now that Welfare Benefit Reform has gone through, see her blog entry, “A Post About Pooh”:


Why Do I Care About Welfare Benefit Reform?

I care because while I agree that these systems aren’t designed to get people off of them, I don’t believe that the solution is cuts that force people with genuine disabilities out into a difficult job market, especially at the expense of children’s welfare.

I care because, as I’ve said before, I see the same attitude toward people with disabilities in America (and I’m seeing it in Canada too) as I do in Britain: drains on taxpayer money (when they’re not receiving income support due to outright fraud). I believe that Welfare Benefit Reform is an unreasonable response to fraud rates that are actually quite low, despite how much we hear about them. They’re low in America and Canada, too. And I’m scared that America and Canada are heading the same way that Britain is, in terms of welfare benefit reform.

I’m care because so much of what I hear about what will work, in terms of caring for people with disabilities, from people who haven’t actually had to do it, just won’t work. I remember a discussion with someone who said that we didn’t need income support for people with disabilities, because communities and churches would just take care of people who can’t care for themselves, if we’d just give them a chance.  I know that this doesn’t work. But some people won’t hear that.

I care because I have friends in Britain with disabilities, and I’m really scared for them.

I can’t imagine how they’re feeling today.


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Welfare Benefit Reform protest…London makes itself heard

welfare benefit reform

Wheelchairs chained in protest of Welfare Benefit Reform at Oxford Circus in London, England earlier today. The protest is still going on…Twitter says that over 200 people have shut down Oxford Street and are now on the move.  Traffic backlogged past Regent Street.


Rock on, London!  I’m with you in spirit!


welfare benefit reform

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