About Sarah

Due to a stroke, I've walked with a cane since I was 22 (I'm 36 now)...but I'm so much more than just the girl with the cane.

Author Archive | Sarah

Disabled Parking Permits and the Dangers of Assumptions

Disabled parking tag with note that says "Faker" attached to itThis post is going to be preaching to the choir for most of the people who read this blog. Maybe you can pass the link along to someone who insists on making assumptions about people who park a vehicle with the disabled parking permit visible in the window, in a disabled parking spot.

My thoughts on this are spurred by a post that I shared on the Facebook page, by a woman with who parked in a disabled parking spot, using the disabled parking permit that had been issued to her, and came back to find a note attached to it that said “FAKER”.

A Brief Lesson About Disabled Parking Permits

In case anyone’s unclear on this, let’s go through when you can’t park in a disabled parking spot (Ontario Regulations):

When you don’t have a disabled parking permit displayed, and you’re going to be in the store for “just 5 minutes”

When you do have a permit displayed, and you’re going to be in the store for any amount of time and the person to whom the disabled parking permit was issued is not in the car.

When you do have a disabled parking permit, you’re going to be in the store for any amount of time, the person to whom the disabled parking permit was issued *is* in the car, but won’t be going into the store. If the disabled person is just going to sit in the car in the disabled parking spot, they’re taking up the spot and pushing out a disabled person that might actually intend to go into the store. It’s a misuse of the permit.

Here’s when you can park in a disabled parking spot: You are the disabled person to whom the permit was issued, or the person to whom the permit was issued is in the vehicle, and will be going into the store.

The Disabled Parking Permit and Assumptions

Abuse of the disabled parking permit is definitely annoying. When I see a car parked in a disabled parking spot, I check to see if there’s a permit displayed on the dashboard. But what’s even more annoying is when people:

  1. Make the assumption that a person who doesn’t “look disabled” enough to have a disabled parking permit assume that a person isn’t entitled to it and must be scamming the system.
  2. Take it upon themselves to police people who they assume aren’t “disabled” enough to have a disabled parking permit.

I don’t think that the average person understands that for many, many disabled people, a day where they walk around town doing errands or having lunch and an afternoon out with friends means three or four days of recovery where they have to use a wheelchair. Even after a decade of being able to walk without a cane inside, and even outside for short distances depending on the season and weather, a day of walking without my cane at the Toronto Zoo left me so exhausted that I was stunned.

It’d be easy to assume, catching a disabled person after a few days of rest and recovery, that perhaps the disabled permit on the dashboard isn’t necessary. Someone might assume that the person gets around that easily all the time, and become suspicious: How is that person disabled? Did he or she scam the system? The trouble with that assumption is that it doesn’t take into account that perhaps that person is so exhausted and in so much pain that the parking permit is vital.

The other trouble with that assumption is the second one that often flows from it, that having identified disability parking permit “fraud”, it’s okay for citizens to deal with it themselves.

Disabled Parking Permit “Fraud”: Citizens Policing Citizens

I don’t understand is how it’s anyone’s business, outside of the office that issues the disabled parking permit, whether a person is “deserving” of a permit or not. The assumption that I’d rather make is that the permit is on the car, someone thought they should have it, whether it looks to me at the moment like they should or not –

And it’s not my job to police people!

It’s not Joe Public’s job, either. It’s none of his business. And I’d really like to know where people got the idea that it was. The idea that disabled people should be required to prove to just anyone on the street on  demand whether they’re “disabled enough” to receive a service is particularly insidious ableism, and a real measuring stick of how far we *haven’t* come. When your typical person on the street still feels entitled to that sort of power over disabled people, that’s a real concern.

I remember writing something like that before, so I went back over my posts for the past year. I found what I was looking for in a post about Kanye West. He refused to continue singing unless everyone was standing up at a concert, and when some people in wheelchairs didn’t stand up (because they couldn’t) he sent staff to make sure that they couldn’t. I wrote:

“There are very few people to whom I have to prove that I’m disabled. They are service providers that need proof of disability so that I can start/keep receiving some sort of service. I’m not crazy about this, but it’s part of life, it’s fairly infrequent, and I deal with it. I do not have to prove that I’m disabled to a person on the street, another disabled person, or anyone else that I don’t want to.”

You don’t have to either. Spread the word.

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Person-First Language: A Closer Look

Disabled (handicapped) person on wheeled chair among people without disabilities.The other day, I read Emily Ladau’s piece on why she uses identity-first language instead of person-first language, and I really liked it. She provided a great analysis of how person-first language became the *only* correct terminology to use for a while, and clearly explained why it’s because very important for many disabled people to self-identify using identity-first and not person-first language.

Including me.

I used person-first language for over two decades, up to and after my stroke. I was trained to use it. I explained to others why it was the most respectful language to use. I wrote probably the first 1.5 years of posts in this blog using person-first language.

It took reading a post by autism advocate Lydia Brown and couple of hours reading some perspectives on people-first vs identity-first language to prompt me to rethink my stance. And now I do prefer to use identity-first language for myself and in my writing. I only use person-first language it when I’m talking to/about someone who has stated a preference for it.

But when I shared Emily’s article on the GirlWithTheCane Facebook page, I included a bit of commentary about a discussion I had with someone after I wrote my first blog post about person-first language vs identity-first:

“I’ve blogged about this subject too, and had someone point out to me though that, as much as person-first is falling out of favour today, we should acknowledge that it was revolutionary when people started using it.”

Person-First Language Was a Game-Changer

There’s a historical context to person-first language that I think we sometimes forget.  It’s not as if, as disability activist and blogger Andrew Pulrang pointed out on the Facebook page, that person-first language is “some tool of oppression cooked up by non-disabled people.” It wasn’t so long ago that it would have seemed silly to call a disabled person a “person with a disability” because disabled people weren’t considered people.  For people to start saying, for example, “He is a person with Down Syndrome” instead of “He’s Down’s” would have been nothing short of a paradigm shift.

It’s worth noting that some groups (like the Deaf community) didn’t like person-first language from the outset and that, as Emily noted, other communities have become disillusioned with it, such as the autistic community. I understand that. As disabled people, we should always be open to moving away from what no longer works, because there are still so many barriers to true equality to be torn down, and some of it is really life and death.

But I think that we need to appreciate the historical context of the things from which we’re moving away, including person-first language.

How Much Does Person-First Language vs Identity First Language Matter in the Long Run?

We’ve rightfully discarded so much of what’s been historically considered “right” and “appropriate” for disabled people because it was neither. Institutional care for intellectually disabled people, for example, has historically been abusive and in violation of even basic human rights.

Person-first language was a response to a culture where disabled people weren’t seen (or treated) as human. It was intended to do good and actually did. It wasn’t a wrong that needed to be abandoned, and still hasn’t become one. While it’s being used less and less, many disabled people still prefer to self-identify using person-first language. Does it hurt disabled identity-first language defenders that that there are disabled people out there that use person-first language, and vice versa, as long as we respect each others’ preferences?   In my opinion, it doesn’t, and no one should be made to feel uncomfortable or wrong for wanting to use one over the other.

There are still such major battles to be fought, and so much debate about this. Has it become divisive when more division is the last thing we need?

Which is not to say that Emily didn’t write a great article.  I’ve been wanting to write about this for a long time, and her article just got me moving.

In Other News…

I’ve written a short Kindle book about the inpatient stroke rehabilitation experience, and plan to write some more about post-stroke life. Right now I’m trying to keep them very practical, but I want to explore some ideas about disability rights issues later in the series. Visit the website for updates: strokeguides.com.

 

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Jim Carrey Tweets Picture of Autistic Youth Without Permission During Anti-Vaccination Rant

cartoon of  nurse giving a child a vaccinationCanadians, who tend to be at least supportive of Canadian actors just because they’re Canadian, have always been a bit divided about Jim Carrey. He’s one of those “love him or hate him” actors. I’ve enjoyed a few of his films. I’ve not enjoyed more of them. A few of them I haven’t bother to see, I’m that convinced that I’d hate them.

I don’t usually let an entertainment figure’s stance on an issue dictate whether I’ll see one of their films, with some exceptions. I had some serious issues with “The Passion of the Christ” and some of Mel Gibson’s public remarks, and now tend to avoid his work. I avoid some comedians because they use the R-word.

I knew that Jim Carrey’s stance on vaccinations being toxic is quite strong, but I don’t stop talking to people because they hold those views.  I didn’t see any need to boycott his films on that basis. And I still don’t.

But last week he took some the steps to get his anti-thimerosal/anti-mercury message out (Carrey insists that he’s not anti-vaccination, but against the addition of these substances in vaccinations) that crossed a line for me, and those steps have put me at “boycott” point.

Jim Carrey Uses Alex Echols’ Picture in Rant About California Vaccination Law

Upset by the law officially put into place in California last Tuesday that children must be vaccinated in order to attend school, Carey went on a 30-tweet rant about the chemicals in vaccinations, calling California governor Gerry Brown a “corporate facist” and using images of children in distress, implying that the thermosil in their vaccinations had caused the autism.

According to Salon, two pictures of crying boys that were tweeted were stock photos. But the third was of 14-year-old Alex Echols, and was definitely used without permission. Alex’s mother, Karen Echols was very upset, and tweeted to Jim:

“Please remove this photo of my son. You do not have permission to use his image.”

She explained later in an Instagram posting that Alex’s autism is caused by tuberous sclerosis and that he was showing signs of being autistic before he was vaccinated.

Jim Carrey removed the photo and apologized:

“I’d like to apologize to the Echols family and others for posting a pic of their kids w/o permission.I didn’t mean to cause them distress.”

I love a good non-apology.

Dehumanizing Autistic People

Cara (no last name given) nailed why Jim Carrey’s action were inappropriate in her blog post, An Open Letter to Jim Carrey. She talks about how Jim Carrey used pictures of children in distress, one that we can confirm is autistic, hoping that they’d scare people into seeing his point of view, and his hopes that people would say, “Oh my goodness, we don’t want our children to turn out like *that*, we’d better not vaccinate!” She talks about how static pictures are inherently dehumanizing, and how autistic people as a group don’t need anything more that dehumanizes them – in the last five years, 80 autistic children and adults have been dehumanized by their parents and caregivers to the point where they’ve been murdered.

Kudos, Cara, for beautifully expressing why Jim Carrey’s actions were so wrong.

Cara touches on the other form of dehumanization that went on.

Shame on You, Jim Carrey

The picture of Alex Echols that Jim Carrey used has been used in a couple of media pieces. Is it fair use? I’m not sure. I wouldn’t use it without permission for a number of reasons, the least of them being that I figure that it’s been posted in enough places by now that Alex doesn’t ever need to come across it in another. But even if it is fair use, Jim Carrey did not use it fairly. He co-opted it for his own cause, with no concern for whether Alex and his family would be okay with that, and in his apology he didn’t say that he was wrong. That he can claim to be so passionately concerned for child safety but exploit a disabled child in that way makes me angry, and very concerned that he didn’t have that insight into why what he did was wrong until someone called him on it.

It was another level of dehumanization: “I’m just going to pick you up and drop you in my cause and I don’t care what you think about it.” Shame on you, Jim Carrey.

Yes, shame on Jim Carrey, because he didn’t have to go further than Facebook to see that Alex is a growing, learning, person, deeply loved by his family and support staff.  Because they’re better people than I am, the Echols family is grateful for the awareness that this incident with Jim Carrey has brought to tuberous sclerosis and to the challenges that Alex faces every day.

And he could only manage a non-apology on Twitter.

You can learn more about Alex and his family here and here.

More About Tuberous Sclerosis and Autism

 

 

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Happy Canada Day…and Yay for the SCOTUS Ruling on the Affordable Care Act!

Depositphotos_11322456_xsThis is my fourth Canada Day post. But I’m posting a bit early because I meant to write a post over the weekend congratulating America on the Supreme Court of the United of the United States ruling on the Affordable Care Act last week, and haven’t got to it yet…and I figured that the two posts would fit well together, because all of my Canada Day posts have been about how Canada’s universal health care system is one of the reasons that I’m most proud to be Canadian.

Long-time readers will know that I’ve been a clear supporter of the Affordable Care Act from the outset. I feel quite strongly that everyone should have access to good health care regardless of their ability to pay for it. Which is why I love the liberal judges on SCOTUS so much for squeaking this ruling through, because now it’s. Not. Going. Anywhere.

From CNN:

“The ruling holds that the Affordable Care Act authorized federal tax credits for eligible Americans living not only in states with their own exchanges but also in the 34 states with federal marketplaces. It staved off a major political showdown and a mad scramble in states that would have needed to act to prevent millions from losing health care coverage.”

I realize that Canada’s system of universal health care looks less like what’s in place under the Affordable Care Act than it does the single payer system with which America toyed, but I think that any health care system with a mandate that as many people as possible should have access to medical care is one in which people can take pride.

Laws like the Affordable Care Act and Canadian Medicare move quality, high-cost medical treatment from the realm of the very privileged to that of people who can’t afford good insurance and certainly can’t afford to pay medical costs out of pocket.

Heck, I could barely have afforded the first ambulance ride to the first ER visit, let alone the ER visit itself, if I’d lived in a country without universal health care. Even with my family helping as much as they could, how could I have afforded the 14-hour brain surgery with one of the best AVM surgeons in North America, let alone the rehabilitation that came afterward?

Because I live in Canada, cost to me (and ultimately to my family, as I had next to no money when I discovered that I’d need brain surgery) wasn’t a factor in my decision to have my AVM treated, or in determining how long I could stay in inpatient rehabilitation after my stroke, or in deciding what kind of follow-up treatment was appropriate and when. That’s a tremendous gift to people who are facing a health crisis, and to their families, who already have so many things to worry about (and, for families who live in rural Canada, may already have to incur substantial costs associated with travel/lodging/food while dealing with loss of income). I’m proud that I live in country where people feel that providing this sort of care to citizens should be a priority, and proud to be neighbour to a country that is moving in the same direction. High five, America, and  Happy Canada Day to all!

Oh, there was another very important SCOTUS ruling last week definitely needs a mention. I was online when word came out that SCOTUS had made gay marriage just “marriage” in all 50 states, meaning that now people can marry who they like (there are still some restrictions on disabled people, but I’ll get into that another day), and the rainbows went over social media in a wave. It was really something to see.

Again, congratulations, America!

I’m proud to say that Canada has been doing this for 10 years.

You’ll love it! :)

 

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Happy Fourth Blogiversary to Me!

So wow! I’ve been doing this for four years. That’s one of the longer commitments I’ve made since the stroke. And considering that I really only started this blog to keep me busy during a particularly long period of unemployment…well, I’m going to celebrate hanging around for this long.

4thEspecially since I could have blogged about a lot of things, and I chose to blog about disability…I think that’s significant. There were things that I needed to say. I’d written about disability before, in a (now out-of-print) book of personal essays, and what was in the book was what I needed to say about stroke and disability and recovery at that point, about six years after my surgery and stroke. But at that point, although my volunteer and professional experience in the disability sector had made me very capable of speaking about discrimination against disabled people, I didn’t know that this discrimination was called ableism, and just how insidious it could be. I could tell you that being called “inspirational” made me uncomfortable, and why, but I couldn’t talk to you about inspiration porn. I could talk about how environments disable people when they’re not accessible, but I couldn’t talk about the differences between the medical and social models of disability.

And I knew only the very basics about autism.

And the government considers me “trained” – I have a Developmental Services Worker diploma, which is the certification that government prefers that front-line workers possess in order to work with intellectually disabled people.

It’s been through the research that I’ve done for blogging here, the conversations with other disabled people, their families, and their caregivers with whom I’ve developed (mostly online, but in some cases quite close) relationships, that I’ve learned that, even after 20 years combined years of volunteer and professional experience of working with people with disabilities, that I had a world to learn…and took my first steps toward becoming more aware of how much appalling/icky/brutal/infuriating/insidious/none of the above (insert your favourite adjective)/all of the above ableism there is the world, and of the ways ableism was present in my thoughts and words.

It’s been quite a ride, and I thank all of you for reading what I’ve writing, for educating me, and for passing on my work. Onward into Year 5!

Also…

I didn’t write a Stroke State of the Union Post on the anniversary of my surgery this year (May 29). I tried – a couple of times. But I couldn’t get it to stop reading like a list of “Here’s what I can do now and what’s still an issue.” I know that people kind of like to hear that, but it’s not really what I wanted to focus on this year, the 15th anniversary of my stroke. I couldn’t figure out really what I wanted to focus on. Maybe…just the couple of important things that I’ve learned this year.

I’ve talked before about how I have trouble asking for help when I need it, for the things that I really do need help with. I’ve spent a lot of therapy time on that, actually. This year, even though it was difficult, I asked for help…sometimes with small things, some bigger things, and once for something that was ongoing and quite significant.

And, shock of shocks, the world didn’t end!

People seemed happy to help, and I really tried hard to believe that 1) They would tell me if they didn’t want to help and 2) That it’s okay, really okay, to admit that I can’t do everything, that I’m worthy of help when I need it, and that it’s okay to ask.

Obviously there are some issues here, and I’ve been trying very hard to work on them. I’m not sure where they come from – perhaps that awareness will come later.

I’ve learned about this year about chronic pain and its effect on a person. Some people experience severe pain after a stroke. I did not. I’ve never experienced any sort of chronic pain. But this year, after New Year’s, my left thigh started to hurt.

I didn’t think anything of it for quite a while. My niece and I had spent a lot of her New Year’s visit playing…playing with Gillian always ends up including “Hide and Seek” and building forts out of couch cushions and a lot of her jumping on me, and I love every minute of it, and there was plenty of opportunity to bruise my leg somehow. I was also falling asleep far too much on my couch over the holidays, watching Netflix on my new TV, and I was convinced for a long time that my leg was sore because I’d just “slept on it wrong.”

But in February, when I was still having pain in my thigh getting up from a seated position, and walking when I tired, I visited the doctor. X-rays showed nothing, and in March, with the pain getting worse and worse, I was referred for an MRI.

In Canada you can wait a while for imaging if you’re not an emergency case. In April and May I frequently could barely walk, and then the pain let up a bit for the nicer weather in June. By the time I had the MRI done a couple of days ago, the pain had faded, and is now fairly easy to live with.

But it’s given me a whole dimension to the empathy I’d previously felt for people who are living with any sort of chronic pain. It’s difficult to get motivated to do anything when pain makes it difficult to walk. I generally do a lot of walking at this time of year, but that’s been difficult. Not knowing what’s going on has been more stressful than I thought it would be. And this is localized pain, very mild most days compared to what a lot of people live with. It’s been an eye-opener, thinking about how other people must cope with much worse…and so gracefully. I don’t know how they do it.

These are some of the thoughts that have gone through my head this year.

I am finding it difficult to wrap my head around the fact that it’s been 15 years since I had my stroke, and don’t know what to write beyond that. More on this later, likely.

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Deliciously Disabled – Accessible Sex Party Planned for Toronto in August!

the word "sex" in uppercase green-blue letters on a pink backgroundAnalyticsI live not-so-far from Toronto and visit there fairly frequently, so I know that it’s not on the cutting edge of accessibility. Only 34 of the city’s 69 subway stations are accessible, for Pete’s sake (but all the subway trains are accessible, so that’s something, I guess). So good on you, Toronto, for hosting Deliciously Disabled, a sex party that’s completely accessible.

Well, not that it’s a city event. More like it’s just being held in the city. But significant nonetheless.

Deliciously Disabled is a private event being organized by disabled activist and academic Stella Palikarova and Andrew Morrison-Gurza, disability activist and consultant. The event will be taking place at the Buddies in Bad Times Theatre, which is fully wheelchair accessible, on August 14.

Deliciously Disabled – What I Like

The thing that I really like about Deliciously Disabled is that it’s not just for disabled people, and that the organizers are really trying hard to get that message across. I’ve been to events for disabled people supported by specific agencies that were also supposed to be open to the general community, but really did end up being segregated events – the way it seemed to work was that community members wouldn’t be turned away at the door, but it wasn’t an issue anyway, because they didn’t know that they could come.  I love that there are actually 40 reserved spots for non-disabled to come and enjoy a sexy evening (which isn’t just sex, this article says – there’s a place for sex and nudity, but “guests can also don masks, watch a burlesque performance, or attend a toy workshop.”)

I also think that it’s just a great idea in general.  Sexuality can be a bit more complicated for disabled people – potential partners can’t always handle talking about barriers, or their concerns that they’re going to hurt the person, or any questions that they may have. This seems like a great, inclusive opportunity for disabled people (and their partners, for those that have them) to explore sex and sexuality in a barrier-free environment. There are 25 spots reserved for wheelchairs., and a call has gone out to support workers to volunteer to provide assistance to those who need it.

Deliciously Disabled – What I Don’t Like

Actually, there’s nothing about the event itself that I dislike. What’s frustrating me is the icky ableism that the media coverage of Deliciously Disabled is bringing out in Jon Q. Public, and in some of the media coverage itself – the Toronto Sun in particular. I don’t know why I’d expect anything else from the Toronto Sun, but Mike Strobel’s article on Deliciously Disabled was…problematic.

First, it was inaccurate. This isn’t the first time Toronto has tried something like this – in 2007, organizers tried to get something similar, Acexxxable, off the ground, but it seems, from the limited information that I could find on it, that it had too much trouble finding an affordable accessible space. Second, Deliciously Disabled is not an orgy. It’d be nice if a national newspaper took this seriously enough to get its facts straight.

Second, while not outright mocking, Mike Strobel’s piece definitely edges on it.  This bothers me because…this stuff isn’t a joke. I like that there’s a really celebratory tone about Deliciously Disabled, but there are some serious issues prompting it, and a journalist skirting the edge of mocking it isn’t appropriate – it invites others to mock it, as we see in the comments:

“It must be a hell of a sight – someone with cerebral palsy having an orgasm! Hilarious!”

“Oh my, who will change the diapers?”

and this bit of “hilarity”:

Q: What is the most difficult thing about eating a vegetable?
A: Getting her back into the wheelchair after.

Granted, there’s a hearty of mix of comments from these very ignorant people and from pearl-clutchers who may be responding more to the word “orgy” than to the idea of disabled people participating in one. It’s difficult to say. However (and I acknowledge that this may be just me) I find the mocking more offensive than pronouncements that Deliciously Disabled is “disgusting” and an example of the world’s “depravity”, or just a step away from a “pedophile sex party” hosted by a “lady so sick she needs her head examined”. I can shrug that shit off, quite frankly, because it’s so profoundly ignorant. But mocking implies that a person know better and yet still making a choice to be ignorant, and that’s harder for me to take. Especially from a journalist.

And as for me…I really need to stop reading comments on articles, because between this, and all the Caityln Jenner hate (great article on that here, btw) and Duggar support last week, I’m worn out.

However, the poll on the same Sun article did say that people who responded were overwhelmingly in support of Deliciously Disabled. I don’t know if that means “Good on them, as long as I’m not involved” or “Good on them, I’d love to join in” or “I’m checking this because there isn’t a ‘I don’t care’ box”, but maybe it means that the negative comments are just coming from a small fringe of people who really are opposed and/or ignorant. It’s just unfortunate that sometimes those small fringe groups can scream really loud (look at the birther movement around Obama.)

Deliciously Disabled – How Can You Help?

Talk to people about events like Deliciously Disabled and why there’s no reason to be threatened by them.

Talk about the myths surrounding disabled people and sexuality. Let people know that the information that society gives them about disabled people and sex and the assumptions that people tend to make based on those assumptions (like, “Disabled people don’t like to have sex”) generally aren’t true.

Parents with disabled children in the school system, ask teachers what kind of sex education your child has already received and can expect to receive and why it’s differing from what non-disabled children are receiving (if this is the case). Disabled children, like all children, need sex education that teaches about boundaries, self-esteem, and safety, as well as the biology.

Make sure (whether it comes from school, medical staff, and agency, or you) that your child’s transition plan for high school to adulthood includes the education on relationships, sexuality, and sexual safety that they’re going to need to safely explore this part of life that most adults need to make them feel whole.

As Stella Palikarova said, “This is really going to take the co-operation of everyone in society,”

So, what are you doing on August 14?

 

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Juliette Beegle, 15, and Her Family Asked to Leave Airplane After Emergency Landing. Was It Because She’s Autistic?

Passenger plane flying above cloudsI’m sure that some of you saw this article about Juliette Beegle, the 15-year-old kicked off an United Airlines airplane with her family, ostensibly because she’s autistic. (This article is another good one that covers the story, and the comments are very interesting.)

I say “ostensibly” because the message board discussion that I’ve been watching on this story has had people point out that the call to have the plane make an emergency landing and have Juliette Beegle and her family disembark may have been made for a neurotypical person too.

Let’s take a look at Juliette Beegle’s story.

Juliette Beegle’s Story – The Basics

Juliette Beegle does not communicate using words, and her frustration levels can get high, especially if she hasn’t eaten. On the day in question, she hadn’t eaten before getting on the airplane, and didn’t want to eat any of the snacks that her mother, Donna Beegle, had brought. Sensing that acting-out behaviour (I don’t like the term “meltdown”) was imminent, and knowing that something hot to eat would calm Juliette down, Donna requested a hot meal from the flight staff. She was told that only first class passengers received hot meals, but that they could offer her a cold sandwich.

Donna and her husband explained what kind of acting-out behaviour Juliette might go into if she couldn’t get a hot meal, including that she might scratch lash out and scratch. The crew eventually brought a hot meal from first class, which calmed Juliette down. But not long after, the plane landed in Salt Lake City, and Juliette Beegle and her family were escorted off the plane. They were rebooked on another carrier (presumably at no cost to them) to continue their trip. Read more here

Juliette Beegle – The Discussion

The discussion that I’ve been watching about this has been very interesting. There’s been  acknowledgement among most of the participants that airlines in general seem to know very little about good (or even adequate) customer service for disabled people. As people who work outside the industry (most of us, anyway) we don’t know what kind of disability training airline employees get, but there are enough examples of it being seemingly absent in their dealings with disabled people that definitely make ableism in the airline industry a trend. Airports are becoming a bit more responsive to challenges involved with autism and flying by offering “dry runs” through airports for families, to help autistic family members to see what’s involved with flying and to help the rest of the family fine-tune the plan for handling the trip through the airport, but there’s still a long way to go.

There was general agreement that the captain and airline staff overreacted.

However, even from some participants that said this, there was another perspective.

For safety reasons, because of the age we live in, airlines are very cautious about everything right now. A woman who did have some experience with the airline industry pointed out that even a small request that deviates from normal routines, like serving a hot meal to a passenger that doesn’t normally get one when meal service isn’t on, keeps the staff from performing other functions that they need to be doing at that point in the flight and sets a dangerous precedent of “You made an exception for that person – why can’t you fill my special request?”

As well, the family basically threatened that Juliette Beegle may become violent if she didn’t get what she want. Autistic or neurotypical, that may have been a risk that the pilot felt that he/she couldn’t take.  After all, Donna said that Juliette would be okay if she got a hot meal, but what if that wasn’t the case? What if her frustration continued to escalate and she actually did scratch another passenger?

But, as another person asked, was it reasonable of the parents to expect that the airline could produce hot food for Juliette Beegle on a dime? Knowing that hot food was what could calm Juliette Beegle before she got to the point that she scratched, was it not up to them to either make arrangements with the airline to have use of the microwave and bring something on board that could be heated up, or to carry food on board in a container that would keep it hot the length of the flight?

Those sorts of questions need to be asked when any sort of person with special needs is traveling by air, not just an autistic person. I think it’s reasonable to expect disabled passengers to ask themselves, “What if there’s a chance that, due to my disability, I need something in the air that the staff may not be able to provide?” and to either do what they what they can to bring it on board (admittedly more and more difficult due to carry-on restrictions) or to call the airline prior to the travel date, explain the requirement, and see what can be worked out.

No one can plan for everything, of course. But I don’t think that in the moment when everyone’s guard is up is the moment to start explaining the finer points of autism and making what can come across as threats, as one of the passengers on Juliette Beegle’s flight talked about:

“Really I saw it as a threat to the airline and the flight attendants to say, ‘Well if we don’t get this, this is what’s going to happen,”

It’s an interesting perspective.

Juliet Beegle – To What Extent Do Airlines Have the Duty to Accommodate?

Should airline disability training include at least enough on autism so that if flight crew are alerted that acting-out behaviour is imminent and there’s something simple that they can do, like give a hot meal to a person that normally wouldn’t get one, that they should do it?

I think so. That’s pretty basic stuff. If the pilot and crew had received some autism training, they might have tried the first alternative suggested by the people who knew Juliette Beegle best sooner, seen her calm for a longer period and been satisfied that she was going to stay calm, alleviating the need to land the plane.

However, airlines need to take the potential for physical violence from anyone seriously, especially in cases where they can’t help so easily.  I think that the emergency landing and deplaning the family was probably an overreaction in this case, because Juliette Beegle’s parents were there to talk about how she normally doesn’t have issues with flying, how this trip had been different because she hadn’t eaten beforehand, and could vouch for how a hot meal generally calmed her – it wasn’t as if this was a passenger traveling alone who said, “I’m anxious, I need a hot meal or I might scratch people” with no other information to inform their decision.

It comes down to that idea of balancing everyone’s rights, which isn’t always difficult to do – but sometimes it really is.

Juliette Beegle – Do Disabled People Have a Responsibility?

I thought about this a lot.

I think that disabled people (or caregivers) need to be mindful that we have to know what it is that we need to function optimally and have a personal plan, to the greatest extent possible, for the times for the times, right or wrong, that we may not be able to get what we need.  I think that this is part of disability empowerment.

We also need to know how to identify when the way that people, trained or untrained, treat us crosses the line into unacceptable. As we saw from this case,  sometimes you can make an argument that a bad outcome is due to an institution’s decisions, sometimes you can argue that it was due to the disabled person’s decisions (or their caregiver’s), sometimes you can argue that it’s both…but sometimes it’s very clearly the institution’s (see this post by William Peace for examples involving airlines).

The discussion I was following on Juliette Beegle’s story got a lot into blame, but I don’t think I like looking at it like that. I think that there are lessons to be learned from it for the airlines and for travelers.

What do you think?

 

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Why Ridge Quarles’ “Inspirational” Act Was Not Inspirational At All

Empty wheelchair against white backgroundSo…it’s been over a month since I’ve been here, for a variety of reasons. It’s not like there hasn’t been anything happening that needs or deserves comment (notably, the reelection of the Tory government in Britain under whom the disability support system was so ravaged by cuts that the UN investigated at one point), but it’s been a matter of time, and energy, and the feeling that I’m saying the same things over and over again and ultimately boring people. But I saw this story last week about a disabled woman and her experience at a Qdoba fast food restaurant in Louisville, Kentucky (and a young man named Ridge Quarles) that’s roused me.

I saw the video, which is now “going viral” and the accompanying story on Huffington Post’s “Love Matters” page. Obviously meant to warm the heart and inspire the spirit, the story’s headline was “Qdoba Worker Feeds Customer with Disability, Reminds Us to ‘Help Someone Every Day’.”

Ridge Quarles, an Qdoba employee at the time, is the article’s main focus. But the article is also about one of the restaurant’s “regulars”, a woman that uses a wheelchair and travels to Qdoba by what sounds like a city-run wheelchair transit bus. Ridge Quarles says that she’s been coming for 5.5  years, often enough that the staff knows what she’ll order, and that she’s told him that the restaurant is his favourite place. He’s being lauded because after getting her set up at a table one day, she asked Ridge Quarles to feed her, and he did without hesitation. Another customer, David Jones, was moved by the gesture and decided to film it.

After all, who would take the time to help a disabled person who can’t eat by herself? This must be an extraordinary young man.

Or, you know, a human being who values helping other people when they need it. Despite the comments on the article lamenting the lack of people like that, I know a whole lot of them, and they don’t get a newspaper article every time they do a good deed. However, because this woman is disabled, Ridge Quarles’ action becomes inspirational.

As one of the commenters points out, this is inspiration porn. Even though it’s by no means bad to give assistance to anyone, disabled or non-disabled, that requests it (as long as you’re sure that your assistance isn’t actually going to hurt, like if you’re asked to do something requiring training that you don’t have), the message of this article is, “Go out and make your day better by helping someone in need, like this disabled woman.”

But we’re not there to help you feel better about yourself. We are people with fully-formed lives and stories and complex needs, and it’s not inspirational to reduce this woman to an object on which to be acted.

Ridge Quarles and the Objectification the Unknown Qdoba Customer

And for those who would argue that this disabled woman was not treated as an object, let’s unpack this a little:

  • No one, including Ridge Quarles, appears to know the woman’s name, despite the fact that she’s been coming to the restaurant for over 5 years. This account says that her name is withheld for privacy reasons, but all the other ones that I looked at said something to the effect of “We don’t know her name or her story”. She comes to the restaurant regularly – how hard would it have been to try to find out for the story, so that she can make a decision about whether she not she wants to be named, or to give her perspective if she desires?
  • Despite the fact that no one knows her name, no one has any problem with using a video that someone filmed presumably without without her knowing it (some accounts go so far to say that the video was secretly filmed) of someone assisting to her to eat in a newspaper article without her permission, as if she’s a prop in Ridge Quarles’ “it-feels-good-to-help-people-go-try-it-today” story.
  • She can’t even get into the restaurant until an employee notices her and opens the door for her, or a patron notices her and holds open the door. Where is the electric door in this restaurant? Has anyone on staff at this particular Qdoba questioned, on the basis of her not being able to get into the restaurant, whether an electric door needs to be put in?
  • Is it just when she asked for support with eating that anyone who worked in the restaurant, after 5 years of her being a customer, noticed that she needed support with eating? If not, did anyone ever think about what responsibilities they had as people observing something concerning about the care of a vulnerable person? If not, how did they miss it?

Not particularly tough questions…just ones that should restaurant staff, including Ridge Quarles, should be asking after serving for 5 years a disabled customer who should have some assistance and arrives with none, particularly the one involving whether there’s a way for her to actually get in and out of the restaurant.

Now, obviously those bullet points assume the best of the woman and the worst of the restaurant and its staff, which might not be the case. Perhaps Qdoba campaigned headquarters tirelessly for an electric door, or didn’t notice that she needed assistance to eat because she’d never showed any signs that she needed it. Perhaps Ridge Quarles actually does know her name and *is* refusing to give it out to respect her privacy. The damage was arguably done when Jones put the video online, but that’s not Ridge Quarles’ fault.

The reporting seems murky, and varies across websites, which is problematic in itself. Still, stories like this also should prompt us to ask how a person who (going by what we read in the story) needs some very basic accommodations and/or support ends up going without when out at her favourite restaurant, regardless of who is supposed to provide it.

Discussion Trends

And some commenters on the Huffington Post article did ask this. But people weren’t interested in discussing it. Some were criticized for bringing it up and “ruining” the story. One disabled commenter was asked, “Bitter much?”, prompting a comment from another about how quickly the public perception of disabled people changes from pity to anger when we start to assert ourselves.

All I know is, my first reaction after reading the story was to cringe and think about how terrible cuts to services really must be when a disabled woman who needs assistance to eat has to go to restaurant alone and hope that someone will 1) Help her to get inside 2) agree to help her to eat, and how icky it is that a piece about those issues becomes inspiration porn.

Don’t get me wrong…I’m glad there are people like Ridge Quarles in the world, who happily help others in need without expecting anything in return. But I’m also sorry that there’s a need for them, and that important aspects of those stories get over-looked because they’re not “inspirational”.

When I discuss a video, I generally embed it. But, granted that it’s so difficult to know from news accounts this woman’s feelings about being in the video, I’ve chosen not to this time. It’s easy enough to find.

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Rand Paul Doesn’t Belong Anywhere Near the White House

Rand Paul with American flag to his right and Kentucky flag to his leftWell, Election 2016 is officially underway, with Ted Cruz and Rand Paul the first two to officially declare their candidacy.

(ETA: I see now that Hilary Clinton threw her hat in the ring yesterday and that Marco Rubio is supposed to today.)

For readers that have joined this blog since the last US Election, be warned: I talk about US Elections, even though I’m Canadian citizen. I talked about Election 2012 far too much. But I was genuinely curious about how it was going to shake out for disabled people in America. Most candidates dropped some general hints in their comments about their plans to bolster (or not bolster, as the case may be) the social security net, but few addressed the disability issue directly, or took the time to address a group large group of disabled people that invited the candidates to speak to them.

I already feel confident in making some predictions about Rand Paul based on past record.  He voted “No” on the ratification of the CRPD (as did Rubio, for what it’s worth) and several months ago made some off-the cuff but inaccurate comments about SSDI and fraud:

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half of the people on disability are either anxious or their back hurts — join the club. Who doesn’t get a little anxious for work and their back hurts?  Everybody over 40 has a back pain. And I am not saying that there are not legitimately people who are disabled.  But the people who are the malingerers are the ones taking the money away from the people who are paraplegic, quadriplegic. You know, we all know people who are horrifically disabled and can’t work, but if you have able bodied people taking the money, then there is not enough money for the people who are truly disabled.”

After taking some time to actually learn some statistics about disability in America, Rand Paul discovered that people get disability checks for more types of disabilities than backaches and anxiety…that the people who have these disabilities don’t make up over half the people that collect disability checks, and that the fraud rate for SSDI is actually relatively low. He tried to walk the statement back, but obviously I remember it – chances are others do as well. Besides, his Libertarian “If you haven’t prepared then I shouldn’t have to help you” leanings aren’t going to make him very sympathetic to the needs of disabled people, I’d imagine, or to those of families who have disabled children that may require costly supports and services.

But I’m actually here today to comment on another story regarding Rand Paul. It’s not disability-related, so I ask for your indulgence as I meander a bit.

I came across a video on my Facebook timeline, entitled “Rand Paul Releases Sexist Condescension on Two Women Journalists”

“Interesting,” I thought, letting the video run.

I ended up watching it several times, because I couldn’t believe what I was seeing:

Rand Paul Needs to Learn to Play Nicely with the Ladies

Now, I acknowledge that NBC’s Savannah Guthrie took a bit of time getting to her actual question, but someone needs to explain to Rand Paul that even when he feels like a like a lady journalist has smacked his ego and left a boo-boo, mansplaining proper interviewing technique to her makes him come across like a little boy throwing a tantrum because a girl bested him at the spelling bee. He’s playing in the big leagues now, where other candidates smile and move on when a journalist’s line of questioning annoys them.

He’s going to have to suck it up.

*I* can be annoyed, though, and I was. I was annoyed on Savannah Guthrie’s behalf, that he spoke to her the way he did and that because of her position, she couldn’t really say anything back to him.  I think that she was annoyed, too.

And then I saw him “shush” the second reporter, CNBC’s Kelly Evans, and my eyes narrowed, and I moved from annoyed to downright angry.

My mother was not a woman who would be “shushed” and she didn’t raise my sister and I to be “shushed”. I like to think that I could have kept it polite in that reporter’s circumstances, but I can guarantee that I would have said, “Please don’t “shush” me.”

“Shushing” anyone is rude, and disrespectful, and not what I’d expect from a man who wants to be President. He’s quite rude over the course of this whole interview, in fact, especially towards the end:

He joked about this later to a male reporter who asked about vaccines: “You don’t want to be shushed, do you?”

But I don’t think that Rand Paul would “shush” a man. I think he sees men as colleagues and women as little girls, ultimately to be tolerated, but chastised when they misbehave.

Rand Paul Didn’t “Shush” Megyn Kelly

A bunch of people have called Rand Paul on this behaviour, including Fox’s Megyn Kelly. I have a love-hate relationship with Megyn. Sometimes she’s right on. Sometimes she’s ridiculous. A Jezebel reader caught it nicely, I think, when she said that Megyn Kelly is very good at speaking about issues that affect her – well-off, white, non-disabled (my addition) women. But on these issues she’s quite vocal and can be quite compelling, and her take-down of Rand Paul during an interview with him for how he treated Guthrie and Evans was fairly gutsy – gutsy enough that he didn’t try to speak over her, although you can see he wants to.

She held his feet to the fire, and I think she caught him off-guard. Who’d have guessed that female journalists won’t always defer to you, huh, Rand Paul?

But I was waiting for him to try and talk over her. I was watching him, seething, forgetting all the times that I’ve disagreed with Megyn Kelly, seeing her the way I see my sister, my friends, my colleagues, the women I’ve supported over the years, and thinking:

“Don’t you fucking dare shush her.”

I don’t want Rand Paul in the White House (not just for the reasons I’ve talked about, but this is getting long.) I’ll try not to write too much about Election 2016…but plan on hearing that again.

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My AVM Story: Working “Out There”, Working on Balance

Grey silhouetted hand. From index finger and thumb dangle a scale with "Life" in purple capital letters on one plate and "Work" in blue capital letters on the otherIt took a couple of years after my brain surgery and stroke, but eventually I was well enough to work.

It’s always been part-time. Work in the educational and developmental services sector is always part-time and contract when you’re just breaking into it these days, and in the area in which I live, work in general is usually part-time and/or seasonal. Most people work a couple of jobs to make ends meet.

Until recently, it’s been rare for me to find more than one job at a time that I can actually do, given my disabilities and the restrictions that they impose on me, although with freelancing there have certainly been times where I’ve worked the equivalent of full-time. But a writing job in my apartment and a desk job “out there” don’t necessarily require the same amount of energy from me, as I’ve recently discovered.

Since September, I’ve been working at a local computer centre, created especially for people who want to do online learning. It’s part of a government program, and a good one. There’s a small fine arts community college in my community, but anyone who’s wanted to pursue post-secondary education in just about anything else has had to take the big, expensive step of moving to a larger centre and attending school there, or commuting at least 2.5 hours round trip per day. With the increasing number of programs offered totally or almost totally online at Canadian universities and community colleges, the Contact North program allows people in rural communities like mine to get assistance choosing a program, get signed up, and to have a place with fast internet access to do their work if they need it.

Most weeks it’s not a whole lot of hours. But some weeks it has has been. And recently there’s been the welcome addition of a writing/research job with a small media production company in my town, for two or three days a week. I some of that work from home, but I like going into the office at least one day a week. My last two jobs haven’t been office jobs. I miss that environment.

I come home at night and catch up on with my freelancing, and often fall asleep at the computer as I’m working. I do a lot of catch-up on weekends.

I hear people who have had strokes talk about how they’re much more tired than they were before, and I remember when that was really the case for me. But now I tend to think, “That’s not me anymore” and I push myself pretty hard sometimes when, really, I don’t know how much of my brain is still damaged, and to what extent, and how it affects me.

I can see the effects of some of it, of course. But I don’t know if even my doctors can say for sure  what all of the effects of the stroke were.

Everyone has to find a way to balance work and other aspects of life, and to figure out how to stay healthy and to schedule time for everything that they want and need to do. I’m grateful to be able to work and to have a lot of work right now, but I’m sorry that it’s not leaving me a lot of time and energy to write. I’m working on that. I’d like to be here more.

I’ve never been very good at the life balance thing. I’m trying to learn!

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