Tag Archives: disability

The Empowered Series: Alberta Service Dog Community

15 Friday Jul 2016

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Samantha Hjalmarson (Sam), my current feature for The Empowered Series is someone who hasn’t started a business or a nonprofit, but a community that empowers, encourages, and connects others. I had an opportunity to meet her a few months ago. Both of us have service dogs (though for different disabilities); at our meeting, her dog was much much better behaved than mine (due to Jenny’s cat-litter consumption). In response to her disability, Sam spearheaded and almost exclusively runs the Alberta Service Dog Community, but she’s reaching for different heights as well. And who would want to say no to cute puppies?

 

About Sam

 

Sam developed fairly severe PTSD after years of abuse by her stepfather, though she didn’t realize it for many years. After high school, she joined the military as a signals operator, and the PTSD along with Generalized Anxiety Disorder started causing problems with her ability to cope. After her three year basic engagement was up, Sam left the military primarily due to her mental health (though there were other reasons). Things were manageable until a car accident put her in the hospital for a few days, then left her bed-ridden for weeks after and then it all started going really downhill. PTSD and Generalized Anxiety Disorder (GAD) have manifested themselves in agoraphobia; Sam spends most of her energy on managing stress levels, and sometimes even leaving the house is a challenge, making work outside the home impossible. One employer after another fired her; even though Sam worked productively when she was present, she couldn’t consistently be at work every day. Eventually she went to a therapist and was diagnosed with PTSD. It eventually hit the point where she was unable to work at all, had to fight to get onto AISH (“another long story by itself!”) and wound up with a Service Dog to help her out.
Sam’s hobbies include making chain mail, finding meditative benefit from baking and cooking. She’s a massive geek, “like Dungeons and Dragons roleplaying level geek”, video games, fantasy books and TV. She enjoys amateur photography and is a cat person (“Honestly if we could have service cats instead of service dogs I would be all over that.”)

 

About ASDC

 

Alberta Service Dog Community (ASDC) came out of Sam’s desire to be a productive member of society. Being on disability and taking money from the government left her feeling like she was being a drain so she really felt that urge to do something to help other people. While Sam’s search for a service dog went quite smoothly most people don’t have that same experience. She was lucky, extremely lucky, in that not only did Hope Heels give her a service dog but she also met a group of women who have turned out to be an incredible support network and some of the best friends she’s ever had. Hope Heels went on a hiatus (it’s currently up and running again) but those friendships remain.

Disabilities like Sam’s in particular, but others as well, can be isolating and lonely. Sam wanted to create a support network like she had, so she started ASDC to bring members of the community together. People who get service dogs from schools and programs often have that built in but owner trainers don’t. ASDC isn’t specifically FOR owner trainers, anyone is welcome, but Sam thinks they benefit the most from it, removing the isolation and creating a support system for each other. Much of the discussion and support is virtual (through facebook), but occasional training dates, coffee meetups and other activities are coordinated to get the group together.

 

More than a Support Group

 

The ASDC mandate is education and advocacy. People who want to get a service dog are educated on some of the ways they can go about that and about the laws that would protect their rights (there are two in Alberta, the SD Act and the Human Rights Act). The public is also educated about those laws, what service dogs are and the rights of Service Dog Teams.

Advocacy is another big piece of what ASDC does. Not everyone who faces an access challenge with their service dog has the ability to stand up for themselves and their rights so ASDC offers to do that for them. ASDC can provide advice on self-advocacy, or will contact a business or other entity on behalf of someone if they cannot advocate for themselves. “People with disabilities need less obstacles in their lives, not more.”

 

So what does Sam… Do?

 

Sam is currently the jill-of-all-trades at ASDC, receiving phone calls, answering any questions that come to the main page, posting the majority of articles, and stepping in to resolve an occasional conflict. Currently, her biggest role at the moment is representing ASDC on the technical committee to develop a National Standard for Service Dogs in Canada. The hope is that this will be adopted across the country and will make it so much easier for owner trainers to be legally recognized and protected, in addition to making service dog standards and access rights clear and consistent across Canada.

 

What’s Next?

 

In the future, Sam hopes to incorporate ASDC as a charitable foundation, but at this point “it’s a lot of work!” She also hopes to build a website to house resources, educational pieces, a list of trainers who can help people train their own service dogs, a list of schools that service the area. Eventually once the National Standards are completed and implemented, she hopes to do a series of videos explaining how to train for the points required to meet those standards. About the future Web site and access challenges: “Pretty much anything you can imagine someone wanting to know about Service Dogs or what to do with one I want up on that website, including a link for businesses telling them when they are allowed to ask a handler to remove the dog. I think that if a business feels secure in their ability to protect themselves then there will be far fewer access challenges.”

 

Conclusion

 

There is more than one way to contribute to society. For many of us, it’s holding down a job and contributing to the economy. If that’s not possible, it’s important to find another way. Sam has created a lively community of service dog handlers from across the province while simultaneously providing support to those who need a place to turn or a question answered. Thanks, Sam, for being “chatty” (you made this post SO easy to write!)

Special Snowflakes: Do you Want Equality or special Treatment?

08 Friday Jul 2016

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I’ve lived in a body whose eyes don’t function “normally” for over three decades now. My life is generally happy, productive, full of friends and hobbies and new trails to blaze, with unique fringe benefits of having eyes that don’t function quite the same way as anyone else’s. That being said, I will never ever say that being blind is easy: from the minor inconvenience of not being able to visually locate things when I drop them, to the more serious potentially life-altering perceptions of hiring managers, academic professionals, or complete strangers on what my abilities are supposed to be… Sometimes being blind can be really really hard. You can’t have one side of this equation without the other, and to be honest, I wouldn’t really want to.
But I also can’t deny that people with disabilities are treated differently than those without. Encounters on the street focus on how sorry someone is, we occasionally get asked if someone can pray for us, and we are presumed incompetent (if we say “no thank you” to an offer of assistance, it gets offered over and over again). That is a problem… but sometimes we perpetuate our own special treatment while demanding equality.

 

Over the past week, two news stories have blown up my social media accounts for completely different reasons:
1) A resolution from a blindness organization that basically lambastes Apple, a company who arguably has put accessibility at the forefront of their testing and release processes, telling them they haven’t done enough for blind consumers;
2) The fact that the CNE (an annual fair and exhibition in Toronto) is no longer offering free admission to people with disabilities. This decision has proved anecdotally unpopular among the disability community.

Both instances deal with the issues of equality and preferential treatment, and they are mutually exclusive; you can’t have one while demanding the other.

 

Accommodation is Not Special Treatment

 

Not long ago I had someone tell me that bringing my guide dog on a plane was a special privilege. In an unrelated note, I was once told that it would never be an employer’s job to provide assistive technology or other accommodations in the workplace because that would give the person with a disability “special treatment”.

Both of these examples are untrue. Guide and service dogs (provided they are well-behaved) enhance the independence of their handlers and can sometimes mean the difference between traveling independently and confidently… or not leaving the house. If a disabled person requires the assistance of an aid to guide or administer medication or otherwise assist them with daily living tasks, it’s far more preferable than being forced to stay in their homes. And assistive technology can be the difference between being employed and living on assistance… so is it still “preferential treatment” when it levels the playing field? Um… no…

If assistive technology, mobility aids, or other accommodations make it possible for a person with a disability to live, work, study, or access information just like the general public, on what planet is it special treatment? And if people with disabilities are viewed as equals (like the lip service I hear about everyone being equal), then no one should deny us the ability to work, study, or travel using the tools that provide us the autonomy that makes us “equal” to everyone else. If you do deny this, you prove that we are not as equal as everyone else, and should keep your mouth shut and think about your stance on “selective equality.”

 

NFB Resolution: We Want our Cake and to Eat it Too

 

Disclaimer: I do not use Apple products, and it’s my choice to do so. I am not affiliated with the NFB or any other blindness organizations. This to say… I have no horse in this race.

If you get through all the big words, what you need to know is this:

  1. Apple has continuously made huge strides in the accessibility marketplace. It’s one of the first, if not the first, to make built-in accessibility options such as the Voiceover screen reader part of all devices straight out of the box. Traditionally, accessible options had to be purchased separately and loaded on to any device, resulting in extra costs and less independent setup options.
  2. Because of this, Apple has been praised by many in the disability community for making people with disabilities a priority, making products instantly usable right off the shelf.
  3. The NFB resolution appears to be saying that Apple simply hasn’t done enough, because they are not prioritizing accessibility bugs and blind beta testers above others. This is a double-edged sword, however, because Google and Microsoft have their own accessibility issues that were not addressed at all in this resolution…
  4. Many have pointed out that this resolution has basically betrayed Apple for releasing software with bugs, telling them that they haven’t done enough for (exclusively) their blind consumers. Others have stated that accessibility bugs are now prioritized on the same level as other bugs in the software… isn’t that what the NFB claim they wanted in the first place?

Ultimately, I agree with those who state that there’s a HUGE double standard here. I use other software that was not lambasted so publicly, and like it or not, it has bugs too. The blind are not the only disability community in the world, and sighted users had problems with some of Apple’s software rollouts; that’s the nature of having software. If Apple were willfully ignoring the community that praised their accessibility efforts in the first place, that’s one thing; but they are creating software that, like it or not, isn’t perfect… for some blind users, but not all; for some sighted users, not all.

A brief note to those who voted for this resolution and publicly stabbed Apple in the back… it’s not always about you!

 

The CNE: Take me to the Fair!

 

The CNE is a well-known exhibition in Toronto; most major, and even some smaller, cities have their own annual fairs. Many provide discounted rates to guides or aids accompanying people with disabilities (see “accommodations” above?). This year, the CNE has decided to stop providing free admission to people with disabilities, but will continue not to charge for people who are guiding or otherwise assisting them. In the above referenced article, it’s made clear that this new policy might not be popular…

I’m all for it. As a fellow disability activist stated: if I can’t afford to go, I don’t go. I read a comment that people with disabilities are statistically living with higher poverty rates and should be given this “perk” because of it. But what about people without disabilities who don’t always have the money… who’s giving them a break? And what about the disabled person who’s fortunate enough to have disposable income… are they not taking advantage of resources designed to assist those who don’t?

If you can afford it, go to the fair; if you can’t, don’t. Nobody owes us extra perks; we face enough “other” treatment as it is.

 

Conclusion: Special does NOT Mean Equal

 

We have a long way to go before we are viewed as equals to those without disabilities. No one can deny that. We face access refusals because of our service dogs, are presumed incompetent for job duties unless we prove otherwise, and seem to be public sources of inspiration for getting out of bed in the morning. We need to decry true discriminatory practices for what they are, but also to live with the full responsibilities that go along with desiring equality. We should not be charged more to attend a fair because we require a guide or an aide, but we should not be charged less. If a company makes a valiant effort to make their system accessible, we need to praise them for their good work while kindly and gently encouraging them to improve things for everyone (not just us). When it comes right down to it, we’re not special snowflakes, and we will never reach true equality while taking advantage of special treatment.

An Open Letter to Hiring Managers: Want to make $$$? Hire Inclusively

09 Thursday Jun 2016

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Earlier this week, I found a story about a home improvement retailer who hired a service dog user with a brain injury. This is terrific! This is corporate responsibility. This is true representation of the broader community which this retailer serves. This is hiring people with unique skills and talents to fill a role that a company sees as valuable. I took to Facebook and thanked whoever hired this man for giving him a position that he clearly desired, wishing more hiring managers and companies did the same.

 

I’m on the job hunt, too, and it got me to thinking. Did this company hire this man – will a company hire me? – only because it is the law to do so? Will they do so because it is the socially conscious “in thing” to do so? Or will they hire people with disabilities because they realize that we’re a huge untapped market for them? Disability not only touches those living with blindness, who are deaf, who use wheelchairs, and/or who have brain injuries (sometimes in combination)… but those with invisible disabilities as well. This doesn’t even address our friends, families, and others who care about us. A Canadian organization recently launched the We Belong App. The app allows consumers to search by location for companies and organizations that hire inclusively (primarily people with developmental disabilities), giving them the opportunity to show financially that it pays to do so.

 

Meaningful employment is something that’s very important to me. I want to be hired at a position with a company that views me as an asset, not a liability. Unfortunately, the latter appears to be the prevailing thinking among people who’ve met me for interviews. I don’t make constant eye contact, I imply that it’s important to use words to communicate… and yet I have years of experience behind me, so that should count for something. Do I want a job? You bet your last dollar. But I want a job with a company or organization that views me as the asset that I am, with unique insights, skills, and talents to bring to the table. Things may have to be done differently, but change is a part of life; many accommodations for people with disabilities end up benefiting entire workplaces, and it’s not often realized until after the disabled employee moves on to other opportunities (personal or professional).

 

So for those who hire people with any disability out of pity or patronism, thanks, but no thanks. It makes everybody miserable and you honestly shouldn’t bother. For those who don’t hire us because of your preconceived notions of our capabilities – not because you truly had more qualified applicants – please know that you’ve broken human rights legislation. The law is only one piece in a mosaic that fits together to include people with disabilities in society, in the classroom, in the workplace. It takes inclusive thinkers – who are unfortunately not frequently in HR – to understand that we’re more than the eyes or ears or hands or legs or brain that doesn’t work as expected. If the law is the only reason you begrudgingly hire me or anyone with a disability, congratulations, you’re a rule-follower, move along now. Ditto about everyone being miserable. But if you want to be progressive, inclusive, and innovative like you claim you are, hire people with unique skills, talents and insights who just happen to be disabled. Your business will benefit as much if not more than the employee you hire, because we do have friends and families and others who care about us… and they reward truly inclusive and empowering workplaces with their positive words to their friends and families and coworkers… and their consumer dollars. The bottom dollar is a motivator for many; I’d like to use some of mine to support employers who don’t discriminate. but that can only happen once pretty words on a page start becoming action, once HR managers, CEOs, and office managers view people with disabilities as unique resources and assets to business and commerce.

 

Oh, and if you are one of those progressive, inclusive, innovative HR managers, CEOs, or office managers, drop me a line; I’d be happy to meet you.

The Empowered Series: Abigail Style

15 Sunday May 2016

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One of the most interesting things about being a blogger is the ability to reach and be reached by a ton of different people. As part of the Empowered series, meet Stephanae McCoy, owner/operator of Abigail Style, who wishes to use fun, everyday products to show, visually, that blindness does not mean a lack of confidence and/or fashion sense.

 

About Stephanae

Stephanae (Steph) McCoy is a retired 55 year old mother to three grown sons and a ridiculously cute 3 year old grandson whom she’s “just ga-ga over”. According to the Meyers Briggs Personality Assessment she’s a true INTJ who is an introverted, analytical, somewhat judgmental and intensely focused person who follows the rules. If you ask her sons, she says they would probably say she’s a buzz-kill but with a great sense of humor, who loves playing practical jokes on people she’s close to and seeking change especially when someone is being treated unjustly.
Steph’s vision impairment was diagnosed in 2005 after regular vision checkups, which meant that some conditions such as glaucoma were caught early but needed operation. Seven years ago she had “The talk” with a doctor at the Cleveland Clinic, who advised her that even though she did all the “right things”, due to surgeries and extreme myopia, her vision loss was irreparable.

About Abigail Style

Abigail Style (named after the white cane icon Abigail) is an online apparel and novelties boutique whose message is designed to “Improve humanity by changing the way blindness is perceived. All Abigail Style products carry her signature stylish image and fun slogans. Currently the products offered are women’s, men’s and children’s t-shirts, women’s tanks, coffee mugs, tote bags and iPhone 6/6s cases. Artist Jennifer Barrile designed the logo, and Steph created the images to be printed on the products.
Abigail Style has been open for business for a very short time, but in the future the hope is to hire a marketing director, social media strategist, and a stylist, and increase the product line to include posters, decorative pillows, and baseball caps.

Why Abigail, and What got Her Started?

There are so many stylish women who are blind or have sight loss that Steph felt it was time for a fashionable icon to represent them. Abigail is a beautiful image that evokes power, movement, independence, chicness, confidence and success, a woman on the move stepping forward with purpose.
After Abigail was created Steph reached out to her online community to request their input on a name for her. Abigail was chosen as a play on the word “abilities,” and Nightingale (the small bird that’s known for its beautiful song) – since it looks like she is wearing a divine feather dress.”

What’s Next?

Steph wants to see how far she can take Abigail as she believes the sky’s the limit. Blindness or sight loss has always been one of those taboo topics and it’s time to change this. Is it challenging for people who have previously seen to learn how to adapt to sight loss? Yes it is, but a meaningful life shouldn’t be dependent upon having eye sight and she hopes to see the negative mindset on blindness and sight loss diminish.
Once, an eye doctor told Steph that it would be a tragedy for her to learn how to use the white cane when in fact she believes the real tragedy is the shame many people feel when losing their eyesight. Having a visual image that evokes beauty, confidence and purpose is a way to change the stigma surrounding blindness and/or vision loss.

Conclusion

I want to thank Stephanae for being so open with me, and for taking the time to answer my nosy questions!
If you know someone with a disability who runs their own organization or business, please leave me a comment or find me on Twitter; I would love to feature them here. The word “inspiration” is so often used to describe us, but empowerment is what we do for ourselves.

First They Denied Access…

09 Saturday Apr 2016

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Earlier this week, my friend Meagan wrote a brilliant blog post about selective discrimination. If you haven’t read it yet, you should, because it’s important. I had full intentions of writing about a similar topic from another angle; thankfully she is gracious enough not to point out that SHE wrote about it first…

Over the past six months or so, since becoming more involved in the disability rights movement and meeting more people, I’ve come face-to-face with some of my own ideas about disability, access, and availability of information. People with a wide range of disabilities – those who are deaf or hard of hearing, who use wheelchairs, who are on the autism spectrum, who live with PTSD – have been far more patient than I deserve. I’ve had my own sense of privilege pointed out – just because I have access to something doesn’t mean that everyone does, and how dare I sit back and be content that I have access to facilities, employment, or information, when the fight for equality is far from over for everyone else? If you live with a disability, and even if you don’t, I hope you’ll consider the next few paragraphs carefully, make whatever necessary changes in yourself, and realize that it’s up to you and me to make things happen, even if it doesn’t directly benefit us.

Let’s start with a few examples. Several followers on twitter have recently opened up a huge discussion about a popular podcasting website that provides audio posts for their blind followers, but delays (if it publishes at all) the publication of transcripts so that deaf or deaf-blind followers can follow along. Many blind people are pushing for TV networks and video-on-demand services like Netflix to provide descriptive video, even as closed captioning has been part of TV networks for years now so that those who are deaf or hard of hearing can more fully enjoy movies and TV programming. In either example, many of those who have received access to the information or service are strangely silent on pushing for others with different accessibility needs to have that same access for themselves. What about physical access to buildings? Just because I have two strong feet and the ability to use them to propel myself forward, how dare I take for granted the ability to walk into any building I choose – a shop, a restaurant, a concert venue – and not even have to think twice about it? Many wheelchair users have to contact restaurants ahead of time to ensure there are ramps to the building, or make sure the seats they purchased for that blockbuster concert are truly accessible. Many are too gracious to point out that we all have our own struggles, but that’s hardly the point now, is it?

 

Among service dog users, the guide dog is the most commonly recognized. But many other service dogs exist. What gives guide dog users (myself included) the right to police what specific services another’s service dog provides so long as it mitigates a disability? How dare we sit smugly by when other legitimate service dog teams are denied access to public facilities just because we are the privileged and most recognizable? What gives other service dog users the right to tell guide dog handlers how much more training our dogs need than theirs? I’ve seen all of this and more… and it’s ugly. And I’m not even touching on the service dog fakers…

 

The blind community in and of itself is not exempt from such stances of privilege. There is an outspoken outrage when a guide dog user is denied access to a restaurant, movie theatre, or taxi. Yet, in moments of vulnerability and candor, some blind people who prefer to travel with canes acknowledge that there’s a teeny tiny part of themselves that is grateful that the battle for access isn’t directly related to them. Until this past week when two blind friends using canes were refused entry to a restaurant because the eating area was upstairs, modern instances of service denial to the blind traveling with canes are exceedingly rare. Several of my deaf-blind friends have had blind people question their dignity and right to access information, resources, and employment services. None of these things are right, and no one should ever indicate that discrimination in any form is OK… and yet…

 

I’m going to go out on a limb and borrow an oft-quoted and paraphrased poem by Martin Niemöller. Maybe this will help the disability community realize that we’re not so different after all, and denying access to some of us should be considered equally as horrible as doing so to all of us:

 

First they denied access to the service dog handler, and I did not speak out—
Because I was not a service dog handler.

Then they denied access to buildings for the wheelchair user, and I did not speak out— Because I was not a wheelchair user.

Then they denied access to information for the deaf, and I did not speak out—
Because I was not deaf.

Then they denied access and accommodations for the autistic, and I did not speak out— Because I was not autistic.

 

Then they denied access and dignity to those with PTSD, and I did not speak out— Because I did not have PTSD.

 

Then they denied access to me—and there was no one left to speak for me.

Do you See me with Vision?

26 Saturday Mar 2016

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Last week, the below video was shared in honor of World Down Syndrome Day. it is narrated by a young woman named AnnaRose, who has Down Syndrome, and the activities depicted are portrayed by an actress named Olivia Wilde, who does not. Only at the end of the video does one see AnnaRose herself, when she says |This is How I see myself. How do you see me?”

 

 

There seems to be two minds regarding this video, and in my opinion both are right. One is that it is important to look beyond the disability of Down Syndrome and embrace AnnaRose as a sister, daughter, or friend. On the Youtube video page, we learn that AnnaRose is a student, an employee, and an athlete. Her life is ordinary in many ways, so the hope is that you look beyond her disability and view her through the lens of humanity. She sees herself following her dreams, especially if they are impossible. She sees herself living an “important, meaningful, beautiful life”, and after all, isn’t that what we all want for ourselves?

 

The other train of thought is more about the visual depiction of AnnaRose’s life, her dreams and her goals. She says she wants to meet someone to share her life with, to be a sister, daughter, friend, to laugh until she can’t breathe, and to cry sometimes. But the video is acted by an actress who doesn’t live with Down Syndrome. This has left many disability activists with the sinking feeling that AnnaRose’s disability, and therefore a part of her identity, is being erased. In a world where disability is either fodder for inspirational feel-good stories or a means of discriminatory treatment, many people with disabilities want the public to see them openly living lives with Down Syndrome, or using a wheelchair, or accompanied by a service dog. Erasing disability is like erasing a part of one’s identity.

 

I first saw this video a week ago when it was first published, and honestly, it’s left me so conflicted. In my opinion, both schools of thought are absolutely right, and yet…

 

I am a woman with a disability. As such, I face many reactions from the general public. I’ve heard the sickly sweet tones of service staff talking to me like I’m a child. I’ve been told that it’s amazing and courageous that I’ve held over ten years of nearly continuous employment, heard the gasps of concerned protectiveness when I mention I enjoy running with my guide dog, or felt the need to fill the stunned silence when I mention that I have started up my own jewelry design business. Conversely, I’ve been told how sorry people are that I can’t see, that my husband is a good man for “taking care of me“, or that there’s no possible way that I can fit in in an office setting despite my work history proving otherwise. It would be a lie if I said these comments and impressions don’t affect me, because they do, no matter how I try and fight it. Not only do they affect how I see myself, they ultimately affect my livelihood and ability to be autonomous and self-sufficient. So, in a way, I want people to look past my disability, to allow me to make mistakes or succeed on my own merits as a woman, not just settle for “good enough” because of the perception that I can’t do any better because I have a proverbial scarlet D for Disabled tattooed on my forehead.

 

And yet, I have no desire to hide my disability. This is partly because it’s not possible for me, but it’s also because I feel like I need to live the best life I can – a vibrant, complex, nuanced, full life with blindness – in order to be happy and to embrace all of who I am. The comments and questions and seemingly constant advocacy aren’t ever going to go away, so as I see it, I have two choices: I can run and hide and let everyone else fight battles for me, or I can prove again and again that there is nothing shameful about being blind, and in fact it has its own advantages. To ignore my blindness completely is to ignore the one thing in my life that has made me as strong as I am while simultaneously bringing me to my knees. You wouldn’t expect a parent or spouse to hide the existance of their child or partner, and yet parenthood and committed relationships often change the lens in which we view the world. So why should anyone hide their disability just to make you more comfortable?

 

I want you to see more than just my blindness, to view me as a friend, an employee, an athlete, an entrepreneur, a customer… a human being. Talk to me, and anyone with a disability, as though your comments were directed back at yourself; realize that we are more than just people whose eyes don’t work or who don’t hear well or are unable to walk at all or without significant pain. We share your humanity, enjoy some of your hobbies, have opinions about religion or politics, have hopes and dreams and desires for our lives. But you don’t need to tiptoe around us, either. Don’t ignore our disability; it is still a part of who we are. In ignoring it, you are in effect not acknowledging the discrimination that we face and the pain and anger that engenders, and can’t truly get to know the completeness of our lives by truly celebrating our successes or picking us up when we’re feeling down.

 

Do you see me as a woman, with dreams for the future and hopes for tomorrow? A woman who likes watching hockey, loves running, and makes pretty beaded things? A woman who drinks too much coffee, loves the sound of a recent snowfall, and sings at the top of her lungs when no one’s around to hear her? That’s great! You see a big part of who I am. Do you see a woman whose eyes don’t work right, who puts labels on her canned goods in her pantry, who navigates the world with a guide dog by her side? A woman who is happy and content with her life, blindness and all, who wants to kick down doors and break down barriers? That’s another part of who I am. You can’t separate one from the other, and yet in a way I need you to. If all you can see is what doesn’t work (my eyes), then you’re missing out on a wicked Scrabble game, a loyal employee, or someone who will cause you to rethink your view of the world. And if you act like my blindness isn’t there, or is scary and uncomfortable, you’re ignoring a true reality of my existence. Put the pieces together, take them apart. See me completely, because I can’t envision myself as one person without the other keeping me company.

An Open Letter to Service Dog Fakers

18 Friday Mar 2016

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Listen to a reading of this postDownload

You and I haven’t had the displeasure of meeting, but you’ve met almost all of my friends at one point or another. You may think you’ve pulled one over on everyone, but you’ve actually made governments – state or provincial – stand up and take notice of what you’ve been doing. I wish I could say that it’s nice to meet you, but then I would be lying… something you do every day by passing off your pet (even a well-behaved one) as a service dog. Maybe you know in the back of your head that your actions may affect those of us with illnesses or disabilities who use service dogs to increase our independence or alert to oncoming life-threatening situations; maybe you just want what you want. You love your dog, I get it; I love mine, too. But just in case you weren’t aware, there are some broader implications of buying a $75 vest online and getting some doctor you’ve never met to sign a piece of paper indicating you need a “service” dog. You’ve heard the general arguments, and you keep doing this, so maybe it’s time someone asked some tough questions.

 

Is it Even RIGHT for your Dog?

If your dog doesn’t scrounge, bark, growl, lunge, wander around unnecessarily, or display other inappropriate behavior in public, move on to the next section; I have different questions for you.

Service dogs are well-trained and welcomed into public establishments for good reasons. They go through hundreds if not thousands of hours of public access training by owners, puppy raisers, and/or professionals, who work their way up to being able to take the dogs into malls, restaurants and stores. Not all dogs that are bred, raised, and go through service dog training complete it for a variety of reasons (much of it stress or health related). Even trained service dogs have “off” days but overall are well-behaved and continuously trained to be that way even after being issued to a handler with a disability or life-threatening illness. If a service dog is uncontrollable or aggressive or ill, and no amount of retraining can fix this, handlers go through the heartbreaking process of retiring the dog. In contrast, you just want what you want – your dog in a store with you – and don’t care about the sudden stress you’re putting on your dog. Your Fluffy, nine times out of ten, is incredibly stressed by your taking him into Walmart to buy your quart of milk, dozen eggs, and a replacement toothbrush, and can act fearful or aggressive due to that stress. And don’t get me started on your allowing your dog to get out of control, display aggressive behavior, to wander away from you, or to do other things for which a child would be asked to leave had they done them. In a terrific facebook post, a friend put this better than I ever could:

… look at it from that pet dog’s perspective. He has no idea what is happening to him, very likely does not like it, does not know how to behave, and doesn’t have a handler who is listening to any of the dog cues he is sending for: “Please don’t bring me here. I don’t like this. I’m scared or mad.” That dog is clearly saying one thing, but all that human hears is: “Me. I get to do what is convenient for me. Screw my dog. Screw the civil rights of other people. Me.”

 

Can you Expand your Dog’s Training?

If you’ve socialized your pet appropriately in pet-approved malls, restaurant patios, and stores, you have my gratitude. Dogs are a reality that our service dogs will encounter regularly, and the better trained or behaved your dog is, the easier it is for my service dog and I to go about our business.

But if you have the previously-mentioned “service dog” vest on your pet dog and take well-behaved Brutus or Fluffy into malls and stores where dogs are generally not welcome, not only are you committing a fraud by passing as someone with a disability or illness, you are making your dog unnecessarily dependent on your companionship. You think you can’t function without him, but in reality you are making him uncomfortable with his own company. If your dog can’t be left at home for a few hours without disturbing the neighbors with her barking or destroying your couches out of boredom, this makes my point for me. Why don’t you take some of that wonderful training foundation you’ve put into place and use it to work with him on separation anxiety? You’ve gotten the socialization training down pat, so take a little bit of extra effort and make all of our lives more convenient, not just yours. I have full confidence in you!

 

Do You Know Your Fraud Is Coming to An End?

Not only are legitimate service dog handlers sick of what you’re doing, businesses and governments are, too. This will affect your ability to pull off this fraud for much longer, particularly as it pertains to your misbehaving Brutus or Fluffy. Many of us service dog handlers are educating businesses on what is appropriate service dog behavior, what is a legitimate service dog being under control but having a rough day, and what is flat-out unacceptable. Businesses and service providers are being advised about the questions they can ask, what behavior is acceptable, and when they can deny service. Did you know that in most jurisdictions, businesses have the right to ask that any misbehaving dog – service dog or not – leave the premises? You’ve gotten by with your mass-produced “service dog” vests and registry cards (which, by the way, currently aren’t worth the plastic they’re printed on), counting on the fear of getting sued for asking you to leave your disruptive “service dog” outside or at home. But many of us handlers have your number and are contacting businesses and advising them of their rights (because, after all, they have rights, too).

What is also looking much more likely in a lot of states and provinces is a government-issued ID, which will make it much much harder, and the penalties much more expensive, to pass Brutus or Fluffy off as a service dog. And you know who’s going to have the burden of providing this legitimate piece of plastic for the asking? Someone like me, who thank you very much, is noticeable enough because of my service dog – you know, one that mitigates a disability? I hope that financial penalties for your fraud will be high, even as I don’t think it’s fair that I will likely one day have to show identifiable information to anyone who asks because you’ve chosen convenience and selfishness over my right to an autonomous and independent life.

 

Do you Actually want to Live My Life?

Speaking of living an autonomous and independent life, do you realize what these real service dogs actually do? They guide blind and visually impaired people safely through streets and malls and airports. They alert a deaf or hard-of-hearing handler of sounds in their environment. They pull wheelchairs and open doors and retrieve dropped objects. If their handler is going through a panic attack, it is the dog’s job to indicate that one is coming or remove the handler from the situation. If a diabetic’s blood sugar is low or an epileptic is going to have a seizure, these dogs alert them to get to a safe place or to take their medication. And I haven’t even scratched the surface. These dogs do a million and one little things that assist the independence of people with disabilities and/or with illnesses that could threaten their lives.

Have you lived a day where you hear a child ask what’s wrong with you, or how sorry someone is that you are blind or deaf or use a wheelchair? Have you been told that severe anxiety or post-traumatic stress disorder is all in your head while you’ve struggled to leave your house and feel safe in a crowd? Do you worry about packing enough food in case your blood sugar gets too low, or have this niggling sense of dread in the back of your mind about when the next seizure could hit? Do you struggle to obtain or maintain a job because people question your ability to perform job tasks, or feel like you have to hide a part of yourself in order to keep the job you do have?

I could go on and on with these questions, but I’ve made my point. Until such point as you’ve lived these lives – whether my own or that of someone I know and care about – then you have no business pretending that you do. Until you’ve had to chew out a parent for allowing their child to make inappropriate overtures to your service dog, until you’ve had strangers abruptly grab your body or mobility aid because they “meant well,” until you’ve been told that your panic attacks or flashbacks are all in your head and to suck it up and get on with it, you do not have the right to use a dog to pretend that this is your reality. If you wouldn’t take your pet dog dressed in “service dog” gear to a job interview because you wouldn’t want the stigma of disability attached to you, then how dare you do so when it’s convenient for you? You want the perks with none of the inconveniences, fears, and complexity that go along with them.

 

In Conclusion

Many people with disabilities live happy and fulfilled lives, some with service dogs and some without. For many of us, a service dog is the difference between independence and seclusion, confidence and fear, life and death. Are you still going to tell me that this little white lie – pretending you have a disability – doesn’t hurt anyone? Call me the next time someone talks to you like you’re a child, denies you an opportunity for employment, or makes you disclose the fact that you live with PTSD because you “look so normal.” If a store doesn’t want to welcome pets, that is their decision; but they can’t turn away people who use wheelchairs, walkers or canes, so they can’t turn away well-behaved service dogs accompanying people with legitimate disabilities. Unfortunately, actions like yours have caused stores and restaurants to turn us away, usually rudely and publicly. I’m sure your dog is lovely, but you have no business pretending he is what he isn’t, or you live with something you don’t. I don’t care what makes you knock off this self-centered entitled behavior – huge monetary fines, a pricked conscience, or embarrassment from being asked to leave by a well-informed employee of a no-pets-allowed establishment – but it’s time your nose stopped growing.

Your “Inspiration” doesn’t Pay my Bills

31 Sunday Jan 2016

Posted by in blindness

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I’ve been on the job hunt for almost a month now. It’s a very different economy from the one I saw three years ago when last seriously looking for work. Like many people, I have experience and skills; the biggest challenge I’ve found (and I am not alone) is getting call-backs for interviews.

The following statements are my own preference, based on my own experience of work, resumes, and interviewing; not everyone will share this opinion. I don’t ever pre-disclose my blindness to prospective employers unless absolutely necessary. In my opinion, it has little to do with my ability to do the job itself, and I choose not to give my interviewers any opportunities to walk into that interview room with preconceived ideas about my capabilities. The idea is, if the job posting indicates that my skills and qualifications fit, I send in an application just like everyone else; I wouldn’t apply for a job looking through microscopes or driving a truck. Sometimes this has worked in my favor; my resume has stood on its own, and my solid work history and a successful interview has landed me a great job. Other times, I learn when I get there that there are truly visual job duties that were not indicated on the job posting, in which case I choose not to assign blame. Other times, I get turned down for the job because… um…?

I recently ran into a situation (though not for the first time) where I was graciously turned down for a job post-interview. I was told that my skills and qualifications were solid, but that there were some job duties that posed a safety risk to myself and my guide dog. There actually was a legitimate case for this, so I chose to be gracious in reply… until I read the part that said my attitude and qualifications were inspirational, and the hope was that I would find a position somewhere else.

Guess what? If I wanted to be inspirational, I’d go on the motivational speaking circuit. I am looking for a job, something that can use my skills and background, where employer and employee have a functional relationship, both being realistic about the capabilities of an employee with a disability, making reasonable efforts on all sides to be accommodating. Seriously, it’s not that hard. People just have to get over the fact that I wish to be taken seriously, and actually want to work for a living, and my resume proves I have the chops to do it! I took to twitter to vent, but I never expected my little tweet to gain such traction (as of this posting, it had 50 retweets).

There are many noble causes out there aiding people with physical or developmental disabilities, those struggling with mental illness and/or poverty. What few people understand is that people with physical disabilities want to work, to be taken seriously in the classroom, boardroom, or salesroom. The more we get treated like token inspirations, the more likely we are to become recipients of aide due to poverty and mental illness. Very few well-known figures who advocate for social change and social justice due to race or gender or other protected grounds even touch on disability. Why is that? Don’t they understand that the more we get shuffled off as “someone else’s problem”, the more likely we are to get sick and tired of just being pushed aside?

In the meantime, I choose to fight, because someone, somewhere, will give me the opportunity to use my skills and background, who will take me seriously as a job applicant. It’s happened before, and it will happen again. But I have a few tough questions for social justice warriors on both sides of the disability continuum: For those who don’t acknowledge our needs at all, and choose to address discrimination based on race, creed, or gender (legitimate grievance, to be sure), why is this the case? We face more discrimination on a daily basis than many of those for whom you are fighting. For those advocating on behalf of the disability community: why is employment not front and center in many of your mandates? In my opinion, meaningful employment is quite possibly the only thing that gives those of us who wish and are able to obtain it the dignity and self-respect we so desire. And for those employers who shuffle me and others like me off, telling us we’re so inspirational for coming to the interview? Guess what: I am not someone else’s problem, and your inspiration doesn’t pay my bills.

When compliments are Insults

24 Wednesday Sep 2014

Posted by in Uncategorized

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“What a shame, you’re so pretty!”

Thus begins this article by the Huffington Post, bringing awareness to a social media campaign called the Chatterbox Challenge.  The aim of the challenge is to use the hashtags #ChatterboxChallenge and #heardwhilstdisabled to break the seemingly public yet unacknowledged silence and give voice to the hurtful comments that are leveled at people with disabilities, as well as raise funds for several Australian disability-centric charities.

 

I myself added a couple of tweets with the ChatterboxChallenge hashtag, figuring I could put into words things that I hear all the time as a blind woman.  I didn’t think anything more about it – much less considered writing a blog post about it – until two fairly well-known personalities got into hot water for heartless comments aimed at two people who just happen to be in wheelchairs.

 

Ten days ago, social media was abuzz when Kanye West called out two fans who did not stand like the rest of the crowd during one of his songs at a concert in Australia.  One of them waved a prosthetic limb in the air to show security (yes, security) that they were unable to do so, and the other was in a wheelchair.  The reviews of a follow-up concert indicated that Kanye changed his schtick to something like “If you are able, I want everyone to stand.”  Whatever one thinks about Kanye’s music, there is no reason for pressure to be exerted by a performer to all but force anyone for any reason to do something they are not willing or able to do.

 

Then yesterday I saw this tweet:

 

<blockquote class=”twitter-tweet” lang=”en”><p>Nothing sadder than a hot person in a wheelchair.</p>&mdash; Ken Jennings (@KenJennings) <a href=”https://twitter.com/KenJennings/status/514125105426071553″>September 22, 2014</a></blockquote>
<script async src=”//platform.twitter.com/widgets.js” charset=”utf-8″></script>Ken

 

Jennings is quite possibly best known as the man who won 74 rounds of “Jeopardy!” back in 2004.  Since then he has appeared on other game shows and written several books, along with many other pursuits.  For someone who is seemingly so intelligent, comments like this demean both the utterer and the recipient.

 

Personally, the comments along this vain are backhanded compliments and full-frontal insults.  To say that it’s too bad that an attractive person has a disability indicates the worthlessness of that person.  Sure, everyone likes to be told they’re attractive, but to throw the disability into the equation removes any compliment that was intended.  People without disabilities would feel angry and insecure if someone walked up to them and told them that it’s too bad they have blue eyes because they are truly attractive otherwise.  But you don’t hear that happen, at least not publicly; instead, we with disabilities seem to be open season for insensitive comments that no one else would be expected to tolerate:

 

Ironically, it’s issues of employment and family life (and the issues that surround them) that seem to draw the most insults.  I have posted before a brief synopsis of my employment journey, so I will not belabor the point beyond saying that it is incredibly demoralizing to be told that we have the smarts, skills and education, but… well, sorry!  We’re just meant to be inspirational for living our lives the way other people expect to see as a “disabled” life.  As for families?  medical “professionals”, social workers, and even families act surprised and shocked that a person with a disability wishes to get married or have children.  Someone I follow on Twitter posted that a former friend told his wife that she shouldn’t have babies with him because he’s blind.  In a worst case scenario, parents with disabilities seem to be at increased risk to have the children they do have taken away from them because of the perception that they are unable to take care of themselves, much less the most vulnerable of our society.

 

I have no problem answering honest questions about how I do things – cook, know where things are around my house, match my clothes – for the simple reason that people question what they don’t know.  Heck, I’m not above asking a few questions myself.  Last year I worked with a woman who used a manual wheelchair, and I had this crazy question for her.  I was a bit embarrassed, but I asked her what she did with all the cupboards above her apartment’s kitchen counters.  I know it sounds silly, but I honestly just didn’t know.  She laughed and told me she crammed everything in the lower-level cabinets and put things she didn’t use often into the upper cabinets with the help of family and friends.  This is the difference between asking questions and making patronizing comments that demean.  Here’s an idea: if you don’t want someone saying such a comment about you, keep your mouth shut and your hands off the keyboard.