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Life Unscripted

Tag Archives: autonomy

So… very… Tired…

23 Wednesday Nov 2016

Posted by blindbeader in blindness

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autonomy, employment, exhaustion, perceptions, personal

My wonderful readers, you have been so patient with me. The past month and a half has been exhausting, exhillerating, frustrating, encouraging, and probably the most conflicted six weeks of my life. You have, without knowing it, given me the space I needed in order to get back in the saddle again… so here I am. I thank you in advance for your continued patience, because I am just… so… tired.

I’m tired of having to convince the general public that I deserve bodily autonomy.

I’m tired of having to convince potential employers that workplace accommodations are in my hands, they have to do NOTHING but respect me and train me the way they would a sighted employee.

I’m tired of being talked down to like I’m a child.

I’m tired of seeing organizations (albeit well-meaning ones) publish books about “how to talk” to me.

I’m tired of feeling like I am fighting all the time, but I feel like NOT fighting is giving up on myself.

And, most of all…

I am tired of blaming myself for being human, for being imperfect, for being angry and frustrated and exhausted.

I am just… so… very… tired.

An Open Letter to Potential Employers: I have a Disability, and I Expect YOUR Professionalism

21 Friday Oct 2016

Posted by blindbeader in blindness

≈ 3 Comments

Tags

autonomy, dignity, disability, Disability Employment Awareness Month, employment, hard truths, open letters, perception, professionalism

It’s a pleasure to make your acquaintance. We’re in a unique situation where we can both benefit each other. You are offering something I need – a job that will, hopefully enable me to serve your company/school/agency well while financially providing for myself and my family – and I have the qualifications that you are seeking. I also happen to be disabled (or have a disability, depending on my choice in language).

Why am I writing to you today?

Last week I discovered an anonymous rant from one of your contemporaries, bemoaning the lack of quality applicants to a job posting. Resumes that had been slapped together, unprofessional interview attire, or (my personal favourite) an applicant’s Mommy walking into the interview with them would leave anyone frustrated and lamenting the quality of prospective employees. Support was fast and furious from other frustrated people – those looking for work in an overcrowded job market, and those charged with making hiring decisions. I understand that you want qualified, professional, competent people working for your company/school/nonprofit, and you receive dozens – if not hundreds – of resumes. But I have one question before I continue: will you read this letter all the way to the end, or will you dismiss me (as many employers have before you and will again) because I don’t fit the perception of your dream candidate?

October is national Disability Employment Awareness Month. Did you know that almost 90% of people on the autism spectrum are unemployed? How about more than 60% of those who are blind or visually impaired? Those are simply two groups of people with disabilities, and there are many more (even those who would never disclose them to you). It’s not because we’re not able or willing to work… it’s because perception (not disability itself) stands in our way.

Did you know that people with disabilities have markedly higher job retention rates, better attendance, and stronger safety practices than their non-disabled coworkers? Did you know that workplace accommodations are generally affordable (if not at minimal cost), and state and provincial governments may cover the costs of those that are more costly? Large corporations (Apple, Tim Hortons) have already started to include people with disabilities as part of their hiring process, both because we are qualified applicants and because we represent the communities in which they do business.

Back to the professionalism bit. I send in my nicely written and formatted resume with the education and/or work experience and/or skills that you are looking for. I pass the phone/email screening stage and get invited for an interview. I’m dressed up neatly and professionally, arrive on time, shake your hand firmly, answer all of your questions. Maybe I walk in with a cane, or roll in using a wheelchair. Maybe a service dog sits by my side, maybe I hear best with a hearing aid. Perhaps I stim, or struggle with multiple sensory input. Maybe none of these things mark me as being disabled. But that’s all you notice and fixate on. It’s like my resume – with all of that education or experience – doesn’t exist. All you can see is the eyes or legs or ears or brain that don’t work “normally.” Little matter that my resume includes years of relevant qualifications, I get asked how (if I’m lucky) or am told I can’t (if I’m not) use a computer, serve customers, carry things, sort items, dial a telephone, navigate the workplace independently. Someone I know even had a prospective employer ask her how she got dressed for the interview.

And you have a professionalism problem?

But it’s never too late to implement changes to hiring practices, to change the conversation regarding disability in the workplace. We can all benefit each other – you get a qualified employee who represents the community you serve, I have the opportunity to use my education and/or professional skills to economically benefit both your company and myself. You deserve the best, the most qualified applicants. Sometimes, that person is me. You want a professional job applicant? I’m right here! Maybe with a wheelchair, cane, or service dog, maybe without. I’d like to meet a professional interviewer and employer, who will see my documented skills and my hard-won experience for the positive traits that they are. Such employers are out there; you can be one of them. Some disabilities are obvious, others are hidden, but we all want the same things: professionalism, respect, and a fair shot. Are you up to that challenge?

 

Respectfully,

Disabled Job Applicants Everywhere

Schoolbooks and Slingshots: Education, Legislation, and the Mess In Between

26 Friday Aug 2016

Posted by blindbeader in blindness

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Tags

access, advocacy, ambassadorship, autonomy, dignity, education, employment, legislation, respect

What does discrimination look like? Is it being told, flat out, that you can’t do this task or have this job or enter that building or raise a family? Is it using insulting words, raised voices, thrown objects? Or is it subtler? Is it the pervasive idea that our presence in and of itself – with minds or bodies that don’t function “correctly” – is unwanted?
More important than that, how can we combat it? Is education the best way to eliminate misconceptions? Or is confrontation more productive? Over the years I have believed that one or the other is appropriate, but I’ve done a lot of thinking recently… why is it assumed that the two are mutually exclusive?

Not long ago I found a couple of friends posting on Facebook a status that went something like this: “Maybe I’m the only blind person you know, and maybe you’re afraid to ask me questions. THIS is a safe place to ask any questions you have – big or small – about my life as a blind person.” It’s an interesting thought – something that I would consider doing on social media, for people who have already built up some form of a relationship with me. But I question the appropriateness of educating the general public… just because they are curious and don’t know how I live my life. It’s one thing for a prospective employer or university professor to ask questions about how the job gets done – but my life is my own, and I shouldn’t have to educate the passenger beside me on the bus how I cook, clean, live my life, just because they’re curious and are dying to know. If someone has the time and inclination to share this information, that’s absolutely acceptable. But not everyone wishes to do so, and should not feel judged by the disability community at large or by the general public for politely declining to answer what can be considered nosy, invasive questions when directed at a non-disabled person.
But what if someone says or does or asks something truly offensive? Is education appropriate? The answer is… yes and no. It does definitely depend on the situation – what was said, how it was said, and how willing the other party is to understand that what they said, did or asked was inappropriate or invasive. I recently had a really rough day, where someone I asked for directions talked over me as though I couldn’t talk for myself, an interviewer told me that my resume was just what she was looking for but she “just didn’t know if I could do the job”, and then a woman on the bus told me that I “looked so young and attractive” that she “never would’ve guessed I had any challenges.” With person number 1, I was admittedly abrupt and short, thanking him sincerely for his help but that I could take it from here and speak for myself (His response: “Really? You can?”) The job interviewer was much trickier, because I felt like I had to not only convince her that I COULD do that job, but also be polite in the face of that dreaded C word (“can’t“). When I was later advised the position had been given to another candidate, I requested more information about my interview itself and was able to explain why her comments and questions were unreasonable and inappropriate, and how it’s always best to presume competence; she thanked me for my feedback and promised to implement changes to her interview practices. The lady on the bus… I was so taken aback by her comment – that attractiveness, youth and disability couldn’t co-exist – that I thanked her for her compliment but told her that it was offensive, because disability is not just for the old and the unattractive. She thanked me for telling her and said she would choose her words more wisely in the future.
But not everyone is as willing to hear our answers, having their own ideas about our capabilities and the realities of our lives. More than once someone has made a statement of how sad my life must be, but when I try and explain, I effectively get told that I’m wrong – that I miss out on so many beautiful things. It’s frustrating on an emotional level, but when it comes to employment it becomes economically frustrating as well. So what do we do when others’ perceptions and ideas and design affects our ability to work, to study, to access facilities? We sometimes fight through legislation. Maybe it won’t change someone’s mind until they realize how serious it is that we’re denied job opportunities, academic pursuits, and the ability to move freely through cities, streets and businesses. I’ve never seen the picture of the “Capitol Crawl” – a public visual demand for passage of the Americans with Disabilities Act – but it’s an important image to keep in mind: access to some is not access for all, and until all citizens have access to the same products, services and facilities, a society is not truly free and equal. And even though not everything is a fight, it is important to band together as a stronger disability community – to support each other and the non-disabled who stand with us as we try and make a difference.
Sometimes it’s best to catch flies with honey rather than vinegar. But if you can’t catch them with honey because they just don’t care, vinegar is absolutely a valid option. It’s important to choose our battles wisely, to conduct ourselves with a strong will tempered by grace, wisdom and logic. Emotion, if channeled appropriately, can be powerful, but it can’t be the only way we respond to circumstance. And logic without personal experience is dry and boring and, frankly, no one wants to hear that either. Sometimes change is best accomplished through well-timed, well-tempered words; other times it means pushing back against ideas and thoughts and practices through personal or government advocacy. No one way is right or wrong for everyone, but it is important that whatever we do, however we combat discrimination and prejudice, that it improves life for everyone, not just one segment of our community.

Relax! It’s Independence!

22 Friday Jul 2016

Posted by blindbeader in blindness

≈ 3 Comments

Tags

advocacy, autonomy, dignity, disability, fear, hard truths, independence, perceptions, service dogs

All the way through high school, I traveled with a white cane. I would move the cane in an arc on the floor no wider than shoulder width (as I was taught), sometimes even narrower than that. You’d think I’d brought and aimed a weapon or set someone’s hair on fire, the reaction was so intense. Students would jump over the cane, slam themselves and their buddies into lockers to get out of my way. My friends thought it was hilarious, but it was probably the first time I seriously felt that people were afraid of me for something that, to me, meant independence and freedom. Since then, I’ve been made aware of huge crowds of people parting the waters because a blind woman with a cane has started walking through a mall during the holidays or a concert venue at intermission. Sure, it makes my life easier, having a clean path, but it’s always made me feel somewhat “other” when it’s announced or otherwise apparent that a path is being cleared for me so that I don’t hit anyone.

Fast forward several years, and Jenny, a wonderful, communicative guide dog wiggled her way into my life. Her presence means that I can travel more fluidly than I ever could with the cane, can even run independently (something I never thought possible). Not everyone likes dogs – some are afraid of being bitten or licked or approached by a dog – and I understand that. If my dog gets invasive, obnoxious, causes a direct disturbance not related to her being a dog doing her job and people being fascinated by her, that’s one thing (all service dog handlers have had moments where their dog’s behaviour has made them want to melt into the floor). But in the span of a week this past spring, I experienced two instances where the mere presence of my dog has caused people to publicly overreact in ways they probably hadn’t intended.
I was sitting on a bus, minding my own business, when the doors opened and a man got on. He turned to walk to an empty seat, saw my dog, then went back to the bus driver and said that he would get on at the back of the bus so he didn’t have to “go past that dog”. I was so shocked I couldn’t say anything. If he hadn’t seen my dog, he’d never have known she was there on the bus. And before anyone raises the “allergies” argument… I’ve worked with people who have allergies, have friends who have allergies, have had strangers discretely tell me they have allergies so that I know to make 110% sure that my dog’s nose is where it belongs, that she’s out of their way, that the risk of contact is as minimal as possible. I have never felt by any of those people as disrespected as I did that day on the bus…
Later that week, I went shopping with a couple of friends and had a lovely time trying on clothes, finding some bargains, and laughing uproariously at a couple of items that fit just slightly wrong enough to be hilarious. After paying for my purchases, Jenny and I were making our way to the exit when two young women more than twenty feet away started screaming that there was a DOG in the store! I chose to redirect Jenny to go a route that didn’t intersect their path, and she handled it with professionalism and grace, but I was so shaken up that two people felt the need to publicly vocalize their fear when my dog and I were doing absolutely nothing to them. At the time, I thought that no one would react similarly to the presence of a wheelchair, but I recently discovered this article that makes me think that such instances happen more frequently than I ever considered.

Last week, I went into a store to return an item. Jenny and I walked up to the counter behind another customer, who very abruptly asked the clerk to ask me to move my dog. I took several steps back out of her way, waited my turn, then walked up to the counter while the other customer walked the looooong way around to exit the store. The clerk told me that the instant she saw my dog, her face just tensed right up. For some reason, it really hurt. It was yet again one more instance proving that I am still considered “other” because I use a dog to travel independently (and if I used a cane I’d get griped at for hitting someone in the ankles).

Why are we so feared? And why is it acceptable? Why did I feel so helpless, like I couldn’t just turn around and ask some of those people if they had something to say directly to me? If someone expressed discomfort with or fear of someone’s race or gender or place of origin or religion, they’d be called out for what they are – homophobic or zenophobic or racist. But because the presence of a disabled body in public is so rare and unexpected, manners go out the window? And that’s acceptable?

So the next time you see someone using a cane for identification or mobility, a guide or service dog, a scooter or a wheelchair, unless they are directly interfering with your ability to go about your day, keep your mouth shut and your fear to yourself. If you want to know how we go about our days so bravely, imagine frequently encountering the fear of others, publicly, and think how you would feel if you had to go through that. We want to go about our days just like you. And you wouldn’t like it if we told our friends that we didn’t want to sit next to a non-white, Hindu man minding his own business on the bus, or freaked out because a woman wearing a head scarf happened to be shopping in the same store as us. You’d tell us to relax… it’s only a bus seat, only a head scarf. Guess what, when reacting to our presence? Relax! It’s a cane, a wheelchair, a dog. Relax: it’s independence.

“Do you Want Fries with That?”

02 Thursday Jun 2016

Posted by blindbeader in blindness

≈ 1 Comment

Tags

autonomy, dignity, driving, lawsuit, McDonald's, privilege, respect

A few days ago this article blew up my social media accounts: a blind man is suing McDonald’s for providing exclusively drive-through service during certain hours late at night, thus alienating blind customers. VERY strong opinions – often conflicting – have been voiced by many people I respect. There are two definite schools of thought, and I haven’t seen much middle ground:

(1) the plaintiff is acting entitled and wants special treatment for blind people, which makes all of us look bad;

(2) If a paying customer wants chicken McNuggets at 2:00AM, a driver’s license shouldn’t be required.

After considering the angles myself (admittedly not the legal implications), I’ve got a few brilliant thoughts to add to the pile… but let’s leave the “why would you want to eat at McDonald’s in the first place?” comment out of this, okay?

 

First: drive-throughs are for cars, period, the end. If you’re a particularly height-challenged pedestrian walking through a drive-through and someone pulls up in a big tall truck, the likelihood is that the driver can’t see you and you’ll end up being road pizza. Add to that the small size of drive-through lanes, some of which have curves that make it impossible for drivers to see pedestrians anyway, and being a pedestrian in a drive-through lane is taking your life into your hands. That’s why they’re called drive-through windows, OK? Good?

 

It is completely understandable that McDonald’s as a business wishes to serve late-night customers without having to keep open a storefront where people enter who may be intoxicated and/or disruptive and/or wish to find a warm dry place to sleep. So they get the benefits of serving drive-through customers without having to watch a storefront. I would assume that intoxicated pedestrians have attempted to walk through the drive-through lanes and order food, and I’m sure that’s not always pleasant. The customers who are driving (in theory) are sober and just want their food and everyone is happy.

 

But this is where in my opinion it gets sticky. Like it or not, not everyone drives or has ready access to a vehicle – and it isn’t always because of blindness. This is where I think the plaintiff is short-sighted (no pun intended). Over the years I’ve met people who have epilepsy, are terrified of driving at night, or don’t wish to take on the financial responsibility of keeping a car in good working order. While the article indicated employees mocked him on several occasions (unprofessional?), I’m sure they’ve had many intoxicated people try and take their lives in their hands by walking through the drive-through. But relegating this lawsuit to discrimination against exclusively blind people – instead of all those who can’t/don’t drive – has many blind people thinking he’s wanting special treatment.

 

But is he really and truly wrong? I don’t think so. McDonald’s and other fast food restaurants with drive-through-only hours are providing an additional perk to those who can drive just because they can drive. And I don’t think that’s fair either. Driving is a huge societal advantage; you can get in your car and go wherever you want to go. You don’t have to rely on someone else’s schedule to leave a dreaded Thanksgiving dinner with your in-laws, you can take a spontaneous road trip just because you want to, and you don’t have to worry that you’ll get stuck in the rain because the next car (read: bus) won’t show up for 45 minutes. And, yes, you can get McDonald’s fries at 2:00 AM because you have a car and driving is the only way you’ll get served.

 

I don’t know how this lawsuit will pan out. But maybe if everyone meets in the middle, something will change and pedestrians will get served at 2:00 AM because we get hungry at that hour and we’re paying customers too. Maybe this happens by opening a designated walk-up window out of the way of those cars that can run us over. Maybe the storefront should be open the same hours as the drive-through windows. Maybe fast-food restaurants can take advantage of food-delivery services that have become extremely popular in the past few years (I’ve seen this, by the way). However it happens, it’s 11:00PM as I finish typing this. I live four blocks from a McDonalds… I wonder if they’re open? I think I’ll walk over there, because I really want some fries.

“You’re… um… Not What I Expected”

27 Friday May 2016

Posted by blindbeader in blindness

≈ 1 Comment

Tags

autonomy, dignity, perception

Expectations. Everyone has them. From the one that says your dream vacation will be… well… dreamy, to the one that your friends and family will be there for you. Usually, life follows this script, at least most of the time… but what if it doesn’t? What if your dream vacation ends up going just sideways enough that you have hilarious stories to tell for years to come? Or what if you needed someone you thought would always be there and they devastated you by being distant or unavailable?
What if you spent your life dealing with not only your expectations about how your life should go but other peoples’ vocal perceptions of it?
I am a 31-year-old married woman with a solid work history, a jewelry design business, a love of running, and a huge mental vocabulary of words to pull out at a moment’s notice… Oh, and I’m blind.
I can just hear your thought [processes, because I’ve heard them vocalized in my presence (if not at me, around me).
Whoa! But you… you can work? Make things? Run? Play Scrabble? But… but…. you’re… you’re blind!
Um… yeah? So? You make little adaptations to your life every day, from changing the way your cell phone’s wallpaper looks to rearranging your kitchen so you can find things more easily. My life is a bit more linear than yours, but that doesn’t mean I can’t do anything I wish to pursue (except, maybe, drive a car, but the technology is coming). The fact that you expect my life to be a certain way because you just don’t know isn’t hurtful in and of itself, but refusing to listen and be educated to change your perceptions… that IS damaging.
And I am not alone. Many people with visible physical disabilities are nearly constantly bombarded with the idea that because they do things differently they can’t be done at all. People who use wheelchairs are frequently publicly asked if they can enjoy an active intimate life. Many friends who are deaf or hard of hearing or have non-speaking autism are treated like they can’t understand information or directions because they cannot hear and/or communicate differently than the general public (ASL, interpreters, written communication). Many people with chronic pain are told they aren’t eating healthy enough or doing enough yoga or “thinking positively” enough. We can educate only so much; if the general public expects sob stories and the drudgery of disability – like in a movie I won’t name that’s being released this week – it directly affects our ability to make a living (if our disability permits) and undermines our autonomy and dignity (if our disability doesn’t).
I’ve walked into many job interviews where my blindness overshadows my work history and experience. With one exception, all jobs in that work history have been incredibly accommodating and have been true partnerships between employer and employee from day one. I don’t mind educating companies, interviewers, or even the general public if they honestly want to know how I do things productively, that my life isn’t drudgery, and take away with them the fact that I’m really no different from anyone else. But when it directly affects my ability to make a living or live an independent, autonomous life, that I do mind. If someone tells you that you have done something that hurts them, it should empower you to discover if there’s any truth in it. If so, it’s important to make changes to validate the lived experience of the person who’s been hurt. For many in the disability community, that isn’t happening.

So I’m not what you expect of someone who is blind. I am confident, independent, a quick learner who works with her hands and moves quickly on her feet. Even if I weren’t, so what? People with disabilities intersect all manner of age, race, gender, belief system, political affiliation, personality traits, motivation, hobbies, interests… and some of us have physical challenges that are much less of a barrier to independent, autonomous living than the perceptions that surround us. If I – or anyone else – is not what you expect… Does that make me super awesome? Sure, my ego would like to think that. But doesn’t it reflect less on me and my “awesomeness” than on you and your own prejudgments?

So next time you reorganize your kitchen to make things easier to access, or change the brightness setting on your cell phone screen, or get map directions to somewhere you’ve never been… you’d feel awfully patronized if I told you it’s awesome that you prepare so well or do things that make your life easier. So, do me a favor, don’t do it to me or my friends in the disability community. Our physical “limitations” are nothing compared to the pity, the discrimination, and the “expectations” the general public has about our lives. Leave your expectations at the door, and listen to what we are really and truly saying. Many of us love our lives and are trying to tell you; many of you just won’t listen. Many thanks to those of you who do.

MY job is better than Yours!

06 Friday May 2016

Posted by blindbeader in blindness

≈ 4 Comments

Tags

autonomy, employment, respect

You’d think – after more than 30 years on this planet and having had a ton of really really stupid things said to me – that I would learn not to stick my foot in my mouth. Not so much.

Last week, I posted on Twitter about a topic that is close to home – employment. I had recently seen a blindness organization posting work-from-home opportunities, as well as openings in their industrial shop. I asked why this is, that it feels like we’re being “hidden away” just to be employed. Others pointed out to me about transportation logistics and the desire of some to work from home. It was never my intent to disparage such things, but it could have come across that way… Because twitter’s strength and its weakness is its brevity, I figured I could explain myself and my viewpoint here on this blog… but I want your opinions, too!

Employment is Essential

I’ve written about this several times on this blog, whether it’s describing my own personal employment journey or the perception of blind people (and those with other disabilities) as inspirational or incapable. Many of us have education, transferable skills, and a strong desire to work, yet get turned down for job after job after job. It is demoralizing and demeaning – not to mention discriminatory – to hear that even though you are more than qualified for a job they have chosen another applicant (usually dancing around the word “disability”). This is where grit and determination come in, sometimes (though not always) aided by organizations that either assist in the job search for applicants with disabilities or provide work opportunities themselves. For those whose disability makes it possible, employment brings a sense of accomplishment, contribution and dignity. So why can’t I just be happy that people with disabilities are being employed… by someone?

The Home Office

The modern workplace is ever-changing. Some companies allow employees to telecommute (work from home) on either a permanent or situational basis, providing employee flexibility, lower office overhead, or the ability of employees to care for loved ones. So it comes as no surprise that some disability organizations subcontract workers for these jobs. It’s a perfect solution for those who prefer to work from home, or who have transportation or logistical challenges to come in to an office every day, or whose disability makes telecommuting the difference between being employed or relying on government assistance. And with the disability organization providing or advising on accessible technology for a disabled client/employee, it’s a win-win… right?

Separate Work Spaces

Some organizations provide workplaces (sometimes called sheltered workshops) where people with disabilities can be employed (primarily alongside other workers with disabilities), learn new skills, and be promoted (something that may be more of a challenge in the public sector). It can provide a sense of accomplishment, comraderie,  and usable employment skills, not to mention – in theory – the ability to earn an income. But some workplaces (Goodwill comes to mind) have paid their disabled workforce sub-minimum wages. This is not the case in all facilities, but it happens enough to be a real concern. This begs the question: is separate really and truly equal?

One Size Does NOT Fit All

It was rightly pointed out to me that it appeared my initial concerns about being “hidden away” by working at home or in blindness organizations came across as unyielding. It was never my intent. If someone wishes or needs to work from home and/or in a disability-centered organization, it should be their choice to do so. But it is by no means the only way for people with disabilities to obtain meaningful employment. Many disability organizations – particularly those who assist in the job search process – have clients who are happy working, no matter the pay, the job duties, or the employer; others have very specific goals, educational background, and salary expectations. Even if it’s not easy, organizations that assist people with disabilities on the job hunt need to be very aware that both types of people exist, and many fall somewhere in between. It is essential that all who wish to use these services feel welcome, like they are being heard, and not like they’re being shoved into a little box that over- or under-estimates their qualifications, setting them up for failure.

Conclusion

I’ve heard horror stories about highly-educated people with disabilities being referred to a job as a Walmart greeter. I’ve experienced first-hand the frustration of asking for advocacy assistance from disability organizations, only to be told to just take whatever job came along because they didn’t know what to do with me. I am not thumbing my nose up at anyone who works from home or in a sheltered workshop if it is their choice to do so and they are happy, healthy, and believe their work has value even in small ways. But it is not what I want for myself, simply because I like to separate my work from my home life, and I – and anyone with a disability – should be given the opportunity to be “out there” in public if that’s our choice.

So if you work from home and like it? I’m thrilled for you! If you work with other people with disabilities and love what you do? Rock on! If you work in the public sector and have found acceptance there? Keep it up!

For those of you who work in the disability field – teachers, employment counselors, advocates, social workers, even family members – really listen to the disabled children or adults with and for whom you’re affiliated. They may have hopes and dreams and fears that you haven’t considered, and they need you to listen to them and act accordingly. We live in our bodies, we know our minds; we know our capabilities. We likely know the employment situation that is best for us, and should have the freedom to reach for the stars – whatever constellation strikes our fancy.

Satire: Choosing a Guide… Criminal?

22 Friday Apr 2016

Posted by blindbeader in blindness

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Tags

autonomy, bonding, dignity, humour, respect

It happens every day. A video is posted on facebook and a zillion comments follow. Against my better judgment, I read some of the comments on one of these shares. Interspersed among comments wishing that more video was shown of the dog to the “awwwww doggie!” responses was a group of people who expressed that it was cruel for dogs to be “enslaved” to serve people, even people with disabilities that “need extra help”. I’ve never met one of these types (at least one that acknowledged it openly), but many of my friends have. What surprised me was a comment stating that it was not only cruel of us as humans to force dogs to work for us, but that criminals should be trained to provide guiding services to blind people.

 

OK, so forcing a dog to work for love and praise and pets and treats and constant companionship is cruel… but forcing a blind person to be at the mercy and whim of another person – criminal or not – is completely logical? And training a released criminal to perform guiding services at the whim of a blind person is not enslavement? Oooookay. Let’s run with that line of thinking. If someone chose to do this… how would one be matched with a guide criminal?

 

Which institution will train your guide criminal? It would be advantageous to select an institution close to home, because there’s no way a blind person can travel independently before they are matched. So blind people should all live in the basement of their chosen training jail or prison, and in the event that’s not possible, they should at least live next door, with no tricky streets, steps or any changes in elevation more than 1/16 of an inch. Ideally, the jail or prison should screen their guide criminals carefully, produce capable trainees, and make sure they are trustworthy people, but the fact they’re there at all should be sufficient reason for blind people who are recipients of their trained guide criminals to weep and genuflect in gratitude. I’m sure there will be studies eventually, but what previously-enjoyed activities would increase the success rate: embezzlement, robbery, assault, drug possession, driving under the influence of alcohol? And would it be expected that a guide criminal should be able to continue to enjoy these activities post-placement, even if it might put the blind person at risk?

 

What attributes would be preferred? Sure, compassion is one; they need to love what they do in support of the poor poor blind people of the world… But what about reliability, personality, habits, age, gender… I mean, this person is supposed to be on-call for guiding duties 24/7 in the unlikely event that a blind person would actually want to go somewhere. So you’d want someone with a good enough work ethic to – at a moment’s notice – keep a blind person safe from creepy people, from falling down stairs, or from looking or acting normal in any way… but they can’t be reliable enough to hold down any other job after all of that training in case the blind person needs their services. How much do you tell a blind person about their guide criminal’s life pre-placement? They shouldn’t care, but occasionally one of them might ask about their great skills or bad habits or health problems or family background or why they would want to be a guide criminal in the first place.

 

The logistics of working with a guide criminal… What if they get distracted and wish to go on a hot date with that attractive person across the street? Would they need to bring their blind handler along for this date? What do guide criminals eat? Where would they sleep? Does anyone cover medical expenses in the event they get sick and can’t work? What behaviors or health conditions would make a guide criminal no longer fit for service? Since blind people are incapable of deciding things for themselves, who decides if a match just isn’t working out?

 

I don’t think the guide criminal lifestyle is for me… I’m off to enslave my dog by taking her for a run around the neighborhood, followed by a seriously good game of fetch, a big bowl of fresh water, and a snuggle on my bed. Doing such things with a guide criminal would be… really creepy. But, hey, thanks for indulging my catharsis in imagining a life where conscripting the time, dignity, and autonomy of not only blind people but post-released criminals is a thing…

An Open Letter to Service Dog Fakers

18 Friday Mar 2016

Posted by blindbeader in Uncategorized

≈ 19 Comments

Tags

access, autonomy, disability, dishonesty, fakers, guide dogs, open letters, service dogs

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.

On Personal Autonomy: No means No!

23 Saturday Jan 2016

Posted by blindbeader in blindness

≈ 10 Comments

Tags

autonomy, privacy, respect

I’m probably preaching to the choir with this post, and if I’m not, it’s even more important that you read it. I’ve seen enough of this attitude lately that it’s time that I tackle this head-on. People with disabilities are not here on earth to be your good deed of the day, to inspire you just for getting out of bed in the morning, to have our privacy violated on social media, to answer all of your personal questions, to allow you to pet our service dogs… either without being asked at all or having our “no, thank you” or “please don’t” be completely disregarded in the name of accepting generosity and not hurting anyone’s feelings. And lest anyone think that I’m being too harsh, it’s not my intent in any shape or form. But I’ve come across a large number of articles over the past couple of weeks that have addressed aspects of this on a smaller scale… so it’s obviously not just me.

 

It started with this article. While I do take exception to the author’s tone (which I did find incredibly angry), if you read beyond it he has a lot to say about personal space and the right to say no. For some reason I have never understood, I have found that many people with disabilities seem to be commodities for public consumption. We’re out in public, so someone grabs our arm to guide us somewhere with no idea where we’re going, even if there is no reasonable inference that we require their assistance other than the fact that we’re blind and it must be so! In recent conversations with people who use wheelchairs, more than once someone has grabbed the back of their chair and propelled them into position at a grocery line or to a table at a restaurant, even if they declined the offer of assistance or were never asked at all. And I’m pretty sure I’m just scratching the surface of variables of disability, public reactions, and responding to unnecessary “generosity”.

 

It is possible to decline offers of assistance graciously when they are unnecessary, even if we believe that they are so outlandish as to be demeaning. A “no, thank you” can generally go a long way. But what if it doesn’t? Is it my responsibility to graciously receive assistance I don’t require if it’s being forced on me? Am I supposed to answer all intrusive and personal questions because someone dares to talk to me in public and wishes to learn the ins and outs of my disability? The answer to these questions is generally no, unless of course I truly wish to do so. I’d like to think I have a pretty good read on people, and a pretty good system of dealing with the genuinely curious, the downright nosy, and the grabbers. But that’s hardly the point; when I say “no, thank you”, I expect that to be honored just as it would be – or should be – from any able-bodied person.

 

But when people take pictures without consent – or, worse, post them on the Internet, I shouldn’t have to be gracious about that. Above, I linked to Carly’s post on the topic, and she can address the social media aspect better than I could. But on a personal note, this disturbs me and angers me, largely because many blind people can’t see it happening, and even those that can may be unable to address the “photographer” directly. Last year a friend and I were on a train with our guide dogs, and someone across the way from us was taking a picture. We couldn’t tell for sure if it was of us and our guides, but it was in our general direction, and we didn’t overhear anything at all related to asking or indicating a picture was being taken. So we started talking really loudly about how rude it was that photos were being taken on the Subway, etc. We didn’t get any reaction from across the aisle, but I hope our point was made.

 

This all being said, it is so important for all of us – those with disabilities and those without – to be respectful if at all possible. Please don’t let this post put off anyone from asking if we require assistance, but simply to ask rather than assume. If we say yes, please don’t rub our faces in it about how great it makes you feel that you’re helping us; if we say no thanks, please honor that. For my blind/visually impaired readers – as much for myself – even if assistance is offered and not required, please take a deep breath and thank the person for the thought; I have found myself getting defensive sometimes when the sixth person in a day asks if I need help – they don’t know all that’s gone before. For my sighted readers, please tread carefully when asking personal questions about someone’s disability (the cause, the level of hearing/vision/mobility they have); the phrase “If you don’t mind my asking” goes a long way. To readers with disabilities, there’s no shame in politely stating that those questions are personal and you don’t wish to discuss them, but what about sports/music/movies? People question what they don’t know, so to them the questions are natural even if to you and me they are intrusive; they may think they have the right to ask them, but we have the right to keep whatever information about ourselves private.

 

Above all, please please please keep your hands and your camera to yourself. Many of us blind folks do know where we’re going and are using that post/garbage can/wall/doorway to navigate and orient ourselves; grabbing us away from such things may actually get us more lost than simply telling us “Just so you know there’s a wall ten feet in front of you.” Unless we are in immediate danger of getting hit by a car or falling down a flight of stairs, there’s no urgent need to reach out and grab us without warning. And we’re not zoo exhibits to show your friends on Facebook pictures of that “amazing blind girl at the mall yesterday, like, out in public and everything!” Trust me, my guide dog LOVES pictures. If you ask nicely, I might even let you pet her before your photo shoot…

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