Tag Archives: hard truths

Is This OK With You?

20 Tuesday Feb 2018

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You’re in a party of six who walks in to a restaurant.
Everyone else is directly addressed,
But when it’s time to place your order, your companion is asked what you would like.
Is this OK with you?

You go to a big sporting or concert event;
There are only a handful of seats available to you, even if the rest of the venue has plenty of tickets for sale.
If you’re really unlucky, the only seats you can get are ones where you can’t see clearly or hear well.
You’re told that these are the only seats specially designed for people like you.
Is this OK with you?

You sign up for a course in an activity you enjoy,
And you are told it’s just “too hard” or “too complicated” to accommodate your participation.
But no one asked what, if any, accommodations are necessary.
Is this OK with you?

You apply for a job with a perfect resume, and get called for an interview.
Your qualifications, skills, and education are briefly discussed, and the rest of the interview feels like you’re having to defend yourself.
You have done nothing wrong, but you walk out the door feeling like you’ve been judged and found guilty.
You get a rejection email or phone call, if you’re lucky; you hear nothing if you’re not.
And sometimes, you’re told it’s because you’re just too much of a hassle.
They don’t put it that way, but that’s what the silences say between their words.
Is this OK with you?

You’re told that you’re not working/able to work because you’re just not trying hard enough.
You don’t have the heart to reply that you’ve had three interviews this month that went badly.
Or that you “wasted your time” by taking care of yourself and your family, volunteering in your community, attending school…
But you should just “keep on trucking” and “keep your chin up,” because that perfect job will come along.
And if it doesn’t, it must be something you’re doing, and you’re “a drain on the system.”
Is this OK with you?

You’re told that your symptoms are all in your head,
That you should just think positively, or do more yoga, or eat better,
And then you’ll be ALL right.
Is this OK with you?

You walk in to a grocery store to buy a quart of milk,
And are loudly demanded to show your ID, leave your medical equipment outside, or get out of the store.
You’re the only person being singled out like this.
Is this OK with you?

Someone stops you on the street and asks if they can pray for you.
They don’t ask what you need or want prayer for; they just pray for the most immediately obvious things.
Then they go on their merry way, asking you to be blessed, and you go your way and feel empty inside.
Is this OK with you?

You’re on your way to run an errand and are stopped by a stranger.
You’re told how inspirational you are for getting out of bed in the morning,
That they would kill themselves if they lived your life.
Is this OK with you?

You’re told that you can do anything you set your mind to.
Except this, and that, and that other thing.
Those would be too hard for you.
No one asked what you thought.
Is this OK with you?

At family gatherings, you’re told that it’s a good thing you are single.
If you have a child, it might “turn out like you.”
If you don’t want children, it’s “completely understandable.”
But when are your siblings/cousins marrying and having babies?
Is this OK with you?

You’re told to accept any attention you get,
Even if it’s negative, detrimental, or not desired.

Even if it’s against all social propriety, against your own wishes… people just “want to help” and you need to suck it up and let them feel good about themselves.
You should be grateful people want to connect with you at all.
Is this OK with you?

You’re told not to let the “little things” get to you,
To give people the benefit of the doubt because they just don’t know how to talk to you.
Is this OK with you?

I – and people I know and love – have lived all of these scenarios and more.
Some of us call ourselves “disabled people.”
Others prefer to be called “people with disabilities.”
even in this small way, we are frequently told how we should refer to ourselves.
And – in all these ways big and small – it’s not OK with us.
It’s not OK with me.

Sugar and Spice and Everything Nice? Not on MY Life!

13 Saturday May 2017

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About three months ago, I started a brand new job. I love my job, the people I work with, the location… all of it. Working in a big building downtown wasn’t something I ever thought I’d do again, but I’m thrilled to be where I am. Jenny and I have been welcomed with open arms by colleagues, managers, building regulars, fellow transit passengers… just about everyone.

But working in a big crowded building also brings to the forefront something every disabled person has dealt with at one time or another: the grabbers. Sure, I’ve dealt with them before in other jobs or other places, but working in a very large building open to the public 5 days a week puts me in touch with many amazing people… and many grabbers.

And you know what?

I’m done being nice to grabbers.

Over the span of the past month, I’ve had numerous encounters with someone (several someones) who thinks that grabbing my body to direct me is acceptable. My shoulders have been turned to direct me, someone steered me by the waist, my hands and arms have been grabbed so frequently (and at one point so hard) that I swear I can still feel marks on my body from the other person’s fingers. Depending on the situation, the closeness of quarters, and the willingness of the other party to observe both visual and verbal queues, my reaction is situationally specific, made in a split second, when I’m not stunned motionless and speechless by someone’s lack of personal boundaries.

But why should I have to think about it? Why should I need to make judgment calls on an appropriate reaction on a frequent basis simply because I have a disability and people get weirded out about it? Why should I have to be nice because someone “meant well”? Meaning well means asking first. Meaning well means listening to my response. Meaning well means not doing something that would reasonably get one punched, kicked, screamed at or sprayed in the face if the action was directed at anyone without a disability.

And think I’m exaggerating?

A blind friend on a facebook discussion on this very topic “only gets rudely grabbed twice a week or so.”

Only?

ONLY?

There is no ONLY!

This behavior is unacceptable. We can all agree that able-bodied people aren’t frequently grabbed, manhandled, pushed, prodded, or otherwise bodily manipulated. We can all agree that such behavior is wrong. So why does disability make it right? The fact that it happens so frequently to people with visible physical disabilities that we think it “only” happens twice a week or so should appall you. The only time to grab someone is if they are actually falling and you need to catch them, or you need to pull them back from real danger (like an oncoming bus a split second away). That does not happen twice a week or so.

My tongue bleeds sometimes from my biting all of this back, from keeping quiet, from being nice. If I had fingernails, the palm of my right hand would have half-moon shaped scars from clenching my fist in my pocket. But I’m done bleeding and scarring because of my own desire to blend in, to simply go about my day. Grabbers, you are the problem, and I’m done taking out my frustration on myself. I’m done being nice because being nice has gotten me – and society – nowhere. So your intentions don’t matter; keep your hands to yourself. I’m taking my equality into my own hands. A woman without a disability can fend off an attack? Your firm grip on my hand, wrist, arm, shoulder, hips, waist, or mobility aid without my knowledge or consent is an attack, and I will respond accordingly. If grabbing me is your way to ensure my safety, I plan on learning and training and finding out how I can keep myself safe… from you. You don’t ask me if I want your help; you think you can and should decide for me. That decision is not yours to make.

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

21 Friday Oct 2016

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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

Relax! It’s Independence!

22 Friday Jul 2016

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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.

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.

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.

When WE are the Problem

19 Friday Feb 2016

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No one can deny that people with disabilities are treated by society at large much differently than able-bodied ones. Social media activism over the past couple of years has given voice to movements like #StopAbleism and #TheAbleistScript, where people with a wide range of disabilities have articulated comments and ideas that have been whispered around us, shouted into our faces, or become internalized in our own lives. This is not to say that the situation is hopeless – far from it – but though a lot of work has been done, we have a long way to go to be treated as equals in a world that simply doesn’t know what to do with us, and occasionally doesn’t seem to care if we speak up for ourselves.

 

But, you see, my dear readers, there’s a flip side to this equation. If we don’t hold ourselves up as true equals, then how dare we expect others to treat us as such? I’m not talking about receiving accommodations so that we can access the same materials, buildings and facilities as our able-bodied classmates, coworkers and fellow consumers; I’m talking about feeding into stereotypes of low expectations, social awkwardness, and refusing to engage that wider world that doesn’t quite see us as human. Be mad at me if you want, but someone’s got to pull no punches. You and I can be contributors to our own experience of ableism, discrimination, and inspiration porn. Here’s how.

 

Over-sharing of the Mundane: Low expectations

Blame the selfie if you want, but over the past few months I’ve seen a ton of blind people (in particular) posting frequent videos of themselves working their guide dog, taking the bus or walking through Target. Many of these are not product education, technology or skill tutorial, or even informational videos, which appear to be extremely popular these days, but they’re just chronicles of ordinary people doing ordinary things. Maybe sighted people do this… I don’t know. Or perhaps I have friends online who have better things to do with their time – like make cool bicycle-repair tutorials, or share awesome and obscure tunes from Youtube. Sure, everyone shares pictures of the biggest chocolate cake they’ve ever seen, posts videos of their dog going crazy seeing snow for the first time, or vents about their bad day… that’s all part of the human experience in the social media world. But I’ve seen many videos filmed by blind people that are just… life! And they share it loudly and widely as though it’s a HUGE accomplishment to show the world how their guide dog takes them through a local pharmacy. I’m not against sharing life experiences – the happy, the sad, the ones that make you raise your eyebrows – but these videos about how courageous you are for taking a bus in a new neighborhood (while it might be very true for you) perpetuate the idea that all blind people feel and act this way… and WE DON’T! If you need support and encouragement, YES, reach out and grab it with both hands. If you’re a talented singer or musician, post those videos, by all means… but blindness has nothing to do with your talent. Video is a powerful medium and, for good or for ill, it shows the things that we’re truly proud of in our lives, and frankly I want us to be proud of accomplishments because they are accomplishments in and of themselves. As my new friend Nicole recently wrote so eloquently:

Think about the larger, sweeping, massive ramifications of allowing someone to think your day to day is amazing, inspirational, courageous. Think about the fact that you’re not just allowing it, you’re encouraging it by creating and posting videos or articles that evoke EXACTLY that response.

 

 

Social Awkwardness: We Just Don’t Belong

Everyone has foibles, eccentricities, preferences, and quirks. It’s all part of the human experience. But perhaps because we’ve never been taught, many blind people fall into habits that are at best odd and at worst damaging to the rest of us. We should be comfortable with who we are, neither denying our blindness nor emphasizing it so much as to make us look like toddlers who can’t care for ourselves appropriately. A recent hashtag on twitter has become a “parody” of sorts, claiming to represent the “funny” side of blindness.I’m not against laughing at the funny things we’ve sometimes confused with others, but I have never found jokes infantalizing us (“discovering” we’re dressed in matching clothes!) or emphasizing blindie-clique dynamics (see below) funny. In fact, they perpetuate the idea that we’re just too strange and awkward to be taken seriously, and who wants to hire or educate someone so awkward or “other” for anything other than than a source of inspiration?

 

Social Isolation: Using Sighted People for their Vision

I am by no means belittling the support of others who share the journey of blindness and visual impairment; in fact, I posted about how awesome and supportive it can be not that long ago. But hiding ourselves amongst exclusively those same people does little to dispel the idea that we are somehow “other” and too “unique” to be bothered connecting with on any meaningful level. perhaps out of necessity (Canada has a small enough blind population that this is possible), or perhaps because I am social by nature, my world has been blessed with terrific friends, blind and sighted. But I notice many blind people who never ever seem to socialize much outside the blind community, with sighted people primarily filling in the role of driver or shopping assistant. This isn’t to say that I would turn down a ride offered by a friend, or indicate that I like grocery shopping alone (I don’t). Nor am I indicating friendships can’t spring out of such arrangements. But just as we wish to be viewed as people, we need to treat others in this way. Keeping exclusively, even primarily, to our social blindie cliques and relegating sighted people into primary positions of driver or guide is no better than us being confined to the role of musician or couch potato. In fact, it’s worse; we know how crappy it feels.

 

Abusing the System: Accommodation at All Costs

I’m a firm believer in computer programs, web sites, and buildings being accessible to people with disabilities. I also believe that it’s essential for workplaces or educational institutions to make all accommodations possible to include us on the job site or in the classroom, not only for our benefit, but for theirs. But it is also our responsibility to ease the way forward for our employers, our service providers, and our professors.If we can make the available mainstream technology work (and much of it works well), then it’s up to us to do so. Using exclusively specialized technology – a note-taker rather than a computer, for example – keeps the barriers to education and employment higher than they need to be, and perpetuates the idea that we’re just too hard to accommodate, so why should an employer or university bother? In many developed countries, it is not uncommon to receive some funding to cover what can be extreme costs of technology. I got stuck in a catch-22 system, where I couldn’t get funding without a job, and I needed that technology to be able to obtain a job. This is sometimes the case in other parts of the world, but sometimes people can receive funding before getting that job, and there are drawbacks to that system as well. Thankfully, it worked out for me, but it makes my blood boil when I hear about people who receive technology for simply searching for jobs who don’t obtain employment due to lack of serious effort, who don’t return loaned equipment, and sometimes don’t even use the technology anymore. It’s important for us to obtain the assistive technology that we need to be able to work, to study, to learn; but if it is not used to those ends, it’s time to be realistic and pass it along to people or agencies who are struggling for basic supplies. Hanging on to unused technology (particularly if it’s been funded) is expecting the preferential treatment we’re trying so hard to avoid. In many developing countries, access to even basic literacy tools like braille writers is almost impossible… and yet I hear of some people who get a ton of technology and don’t even bother looking for work. Stop it! Your complacency and entitlement makes it harder for the rest of us who actually need that technology to be productive. And to say nothing about obtaining employment…

 

Making Excuses: “Because I’m Blind!”

I am not one of those people who thinks everyone should be able to cook a 4-course meal, have a spotless house, and never ever ever ever EVER ask for help with anything. Frankly, living with the expectation of perfection is exhausting, and no sighted person is held up to those standards either. But it drives me up a wall when I hear the excuse “I can’t [insert activity here] because I’m blind.” OK, even though three years ago a blind man tested out Google’s self-driving car, the technology isn’t quite there for us to drive completely independently. Aside from that, blind people have done tons of great things – big and small – all over the world, from raising families to opening businesses to studying subjects they love. The possibilities are endlesss, truly, even if not all of us have the inclination to climb a mountain or open up a restaurant. But if you aren’t a good cook, or don’t like to clean, or don’t feel safe sky-diving, that’s your humanity talking; it is NOT because you’re blind. Don’t even go there!

 

Conclusion: Cleaning out the Dirty Laundry

I hate the idea that I am an ambassador for the blind, and yet, in some ways, I really am. And so are you. It’s a fine line between expecting perfection of ourselves and allowing low expectations to dictate the course of our lives. Both are extremely damaging and exhausting, and really not realistic. Ultimately, though, we can’t expect equal treatment until we avoid the pitfalls listed above. I never would’ve written this post had I not seen so many instances of this both in-person and online. And if I’m truly honest with myself, at points in my life I’ve even engaged in some of these problem mentalities and behaviors. But we can move on from this place. We can share our lives from the focus of our humanity, not our blindness. Even if it’s painful, we need to take a look around us and notice which of our behaviors make us stand out unnecessarily. Many people wish to befriend us, and it’s up to us to open ourselves up to the sighted world to challenge us and befriend us, not just serve us. While we still are viewed as needing the right to access, stop confusing our rights to access with abusing the ability to use the supports that are supposed to make it happen. And we must stop using our blindness as a license to be lazy and have everything done for us, because if we don’t, we’ll be back where we started, making videos of us sitting on the couch and writing blog posts…

 

I won’t pretend any of this is going to be easy. But I hope that confronting some painful realities about ourselves can spur us all to make some necessary changes. Is discrimination and ableism a problem? yes, it is. But sometimes, we’re the problem, and in those instances – and only those instances – we need to get out of the way and give the naysayers, the ableist and the discriminatory no valid reason to think that we’re useless, lazy, manipulative or uneducated. After all, as much as it’s up to us, let’s give them no valid reason beyond their own prejudice to discredit us… then they can look in the mirror and realize how they’ve contributed. But right now, I think it’s our turn…

 

*** UPDATE: Thanks to John and Brandon for tearing this post apart in a marathon podcast. Because of this, I have kept this post primarily intact, but did change a line you rightfully found offensive. I appreciate your opinions, and the fact that overall they came from a place of respect, even if you disagreed with me. This blog is nothing without readers and friends. I love constructive dialogue, and am willing to listen to any who respectfully disagree with any of my opinions. So, please, I welcome any further dialogue on this and other topics related to blindness, confidence, life…