Category Archives: blindness

Girl on the Run: you do WHAT with Your Guide Dog?

20 Friday May 2016

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Until this past year, I didn’t consider myself a runner. Before I played goalball, I didn’t consider myself an athlete, either. Growing up, I firmly believe it had little or nothing to do with my blindness, but my interests went in different directions (music and books and learning languages, mostly). But in the way of most schools everywhere, all students – including this bookish, creative blind student were made to do things they aren’t interested in, or even want to do… something I whined about at the time, but am grateful for today. I try not to think about this much, as is the way of most high school memories… but I’m sharing it with you because… well, because I want to.

Grade 8, PE class. The time of year that all the students go for a 3 mile run (the exact distance I’m not quite sure of; the fact I was completely unprepared for it, I have no doubt). I was an out-of-shape thirteen-year-old who hadn’t done much physical activity since walking away from competitive trampoline more than a year earlier. I found myself walking more than running, but something in my brain clicked about 200 yards before the end of the run. My legs just went and took over my body and my brain, and I was running flat out. I know people were calling my name, I know at one point they were screaming at me to stop, but my feet and legs and body kept moving, and I just couldn’t stop… until I ran full-speed into a telephone pole.

I gave up running after that. To this day I don’t know if it was the fact that my interests truly did go in different directions, or the thought that I was too embarrassed to risk getting another shiner on my forehead. I was a blind kid with little true desire for physical activity, and – even though I was encouraged to pursue track and field – I resented the idea that I would need a sighted guide runner whose pace I would likely slow down, and it all just sounded so unfair. Besides, I had other things that took up most of my time, so I didn’t really miss it much.

I often think about that path not taken these days, since taking up running again. I’ve done a fundraising run in support of the local blind sports organization for the past five or six years, but beyond that, until this past couple years, it hasn’t been a burning need for me. Maybe if I had the confidence to run, or easier access to guide runners locally, or just more time to kill, maybe I would have done this sooner. But I can’t think that way, really, because it’s time to look forward, not back. I’m lacing up my shoes, harnessing up my guide dog, and going for a run.

Whoa whoa whoa! I am doing what?

I’ve written before about running with my guide, but since it’s a relatively unusual activity to do with one’s guide dog, and I get asked a zillion questions about why I would do this at all, here’s the route I’ve taken to this point, and where I want to go.

It all started a couple years ago after the fundraising run; I had made a great connection with my guide runner, and she and I agreed to go running together. This would involve going home from work, leaving my guide at home, taking my cane, catching the bus, going for a run, catching the bus home… and to me, that was a lot of planning for a quick run, as much as I loved running with my friend. Add to this the fact that I have a guide dog who genuinely likes to go fast (and occasionally we have “arguments” about such things), and I figured I could at least try running with her.

A friend makes sports-style harnesses and I asked her to make one for me. It has a lot of room for the dog to move and acts like a traditional harness in all other ways. The pull in the handle took some getting used to, but once I understood the feeling of the pull in the harness, we were ready to go! I started small (like, around the block small); if Jenny hated it, I didn’t want to make her run with me. She took to it so quickly that over just a few weeks, then months, we increased our speed, distance and complexity of routes. Our winter was short, so it didn’t take long for us to really get moving this spring. This past month alone, we have done our longest run ever (more than 7 km), had our fastest ever run longer than 5 km, and did our first ever big group run in support of the Fort mcMurray evacuees. That last wasn’t a flawless experience, but it taught me how to handle it, and gave me hope for other big group running events later on in the spring and summer, and even beyond. My goal is to run an organized 10K by the end of the season; we’re well on our way!

I’ve made some mistakes along the way – misjudging if my guide wanted water (the answer is usually “no”) or underestimating her willingness to go at fast speeds – but when we have this matching jogging-pace speed and are completely in sync, there’s no feeling like it. Many people ask me if I’ve ever been hurt; the answer is yes, but it’s got nothing to do with Jenny and everything to do with my thinking I know more than she does. If I listen to her quick, decisive, flawless guiding moves, I know I’m in good paws. More than once I let Jenny set the route (or, at the very least, don’t direct her as much); our neighborhood is a veritable labyrinth of angled sidewalks, roads that intersect and curve around back to each other – a residential runner’s paradise. I can focus on my feet, on my music (90s music is the best to run to!), on the feeling of wind in my face and the smell of pine sap in the air. I don’t have to think too much about where I’m going, what street I’ve crossed, if I’m lost or not, I can just run. I know my guide will run me home when she needs a drink of water.

MY job is better than Yours!

06 Friday May 2016

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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.

Book Review: “The barefoot Lawyer

30 Saturday Apr 2016

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No one is saying that there aren’t problems being a blind person in the western world; from high unemployment rates to ignorance of our skills to access refusals with our guide dogs, no one can say that being blind is easy. But what if you lived in a country with a government whose interest truly is themselves and you can be thrown in jail for speaking out?

The barefoot Lawyer

By Chen Gwangcheng

For years I’ve wondered what it’s like to be blind in another country, particularly one with different access challenges than those faced in the western world. Sure, there’s this book that details a sighted person’s perspective teaching at blind schools in Tibet and India, but very few first-hand experiences translated into English. So I bought this book and read it on a recent trip. As soon as I plugged in my headphones, I was taken away to rural China and the life of Chen Gwangcheng.

Publisher’s Summary

It was like a scene out of a thriller: one morning in April 2012, China’s most famous political activist – a blind, self-taught lawyer – climbed over the wall of his heavily guarded home and escaped. Days later, he turned up at the American embassy in Beijing, and only a furious round of high-level negotiations made it possible for him to leave China and begin a new life in the United States. Chen Guangcheng is a unique figure on the world stage, but his story is even more remarkable than anyone knew.
The son of a poor farmer in rural China, blinded by illness when he was an infant, Chen was fortunate to survive a difficult childhood. But despite his disability, he was determined to educate himself and fight for the rights of his country’s poor, especially a legion of women who had endured forced sterilizations and abortions under the hated “one child” policy. Repeatedly harassed, beaten, and imprisoned by Chinese authorities, Chen was ultimately placed under house arrest. After nearly two years of increasing danger, he evaded his captors and fled to freedom.
Both a riveting memoir and a revealing portrait of modern China, this passionate book tells the story of a man who has never accepted limits and always believed in the power of the human spirit to overcome any obstacle.

A Brief note on Audio

I almost threw in the towel after the prologue. The narrator, David Shih, is a competent narrator for this book, but there are portions of the book that are written from the point of view of Chen Gwangcheng’s wife. The producers of this audiobook chose not to have a woman narrate those small portions of the book, but with no verbal indicator that the point-of-view change was occurring, it was very disorienting to have an instant scene switch. This only happened in a couple of spots throughout the book (particularly those describing the escape), but it is worth considering if you choose to listen to the audio.

Early Life and Education

The author details his life in straightforward prose. His family had him do farm chores; his brother taught him to identify trees by feel, and with the exception of education he was treated like every other member of the family. Even when he went to school and received training to read, write, use a computer and travel independently, his family was as supportive as they could be at a distance; they saw what happened to many blind people in the countryside making a living as storytellers and relying on the kindness of townspeople for food and lodging. He is neither self-pitying nor self-congratulatory, simply describing the way things were. This lends the book a sense of honesty and yet emotional distance that in my opinion is a great strength and yet its biggest downfall.

Advocacy Work

After graduating from college, Chen Gwangcheng became what he calls a “barefoot lawyer”,similar to what we in the west would call an advocate – he would go to court to demand rights for people whose rights had been violated, but he didn’t have formal legal education. In China, Chen Gwangcheng says, it’s not uncommon for the government to break its own laws, particularly as it comes to blind people, because they believe blind people wouldn’t be able to fight back. At one point in his advocacy work, he was thrown into jail for years and then held under house arrest, during which time he was unable to openly communicate with the outside world, his wife was beaten in front of their daughter, and his son lived with his grandparents far away.

Family Life and the Support of Others

The author does an admirable job of explaining his family dynamics, from his earliest memories of his family and their sacrifice so he could attend school, to his wife’s family’s opposition to their marriage. His family may not have done all the “right” things according to all the information we have, but they did better than most with the knowledge they had about blind people. His wife ultimately laid down the law with her family that this was the man she would marry, something unheard of in rural China

Chen Gwangcheng also chose to learn as much as he could from others, relying on their assistance as needed only until the point that he could do things for himself. During his escape, he relied on his own knowledge of his neighborhood – primarily provided from his wife – and the assistance of others. It was partly his own tenacity, patience and willingness to take chances and partly the kindness of others that ultimately got him out of China. He has no difficulty describing what he did himself and what he hoped others could do for him, simply because that’s the way it is and his life depended on it.

Emotional Distance And Unresolved Conclusion

I stated this earlier in this blog post. There is something emotionally distant about this autobiography. Whether this is because it’s how the author himself details things or whether it’s cultural, I couldn’t say. But it makes this book shine the brighter, even as it lacks emotional language. It’s not that it’s flat, it’s just that things are told matter-of-factly about feeling frustration or despair without the emotional component of so much western writing.

The book also ends once the author arrives in the USA, leaving it somewhat unfinished, as he arrived in 2012 (three years before the book was published). This reader would love to know what he’s doing now, how his family is, and what his future looks like to him.

Conclusion

A well-written, generallly well-read book about being a blind man – a barefoot lawyer – in contemporary China. 4/5 stars.

Satire: Choosing a Guide… Criminal?

22 Friday Apr 2016

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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…

“But… You Don’t Look Blind”

15 Friday Apr 2016

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“You don’t look blind.”

Every blind person I know has heard this comment – or wishes they had – at one point or another. Since it’s a common comment with wide-ranging social implications and viewpoints by the recipient, a blog challenge went out to several friends on Facebook. Once this post is published, I will link to the others’ posts at the bottom of this one. I’ve never done a “blog challenge” before, so here’s my first!

 

Who Gets this Comment?

Almost every blind person I know has received it at one point or another, especially those whose blindness is caused by genetic vision loss rather than the result of surgery, illness, or trauma. Even if the blindness is visibly obvious, if a blind person does something or expresses an opinion that involves a degree of “advanced competence” or normality, it isn’t unusual for those words to follow. It is often given by strangers when we’re out doing ordinary things like shopping or crossing streets or applying for jobs…

Is it a Compliment?

these words are meant by many as compliments, similar to “I forget you’re blind!” But denying the reality of someone’s blindness, or acknowledging that they would be treated differently because of it, is rather insulting, no? And just because you fear living your life with blindness (it’s a well-documented fear) doesn’t mean that those of us who live with blindness or visual impairment – cannot be happy, competent, “normal” people. So whether we look blind or not… what difference does that make to you? You don’t look ignorant…

Broader Implications

Many friends with vision impairment that’s not visibly obvious have been told that they don’t require accommodations due to the fact that they aren’t “disabled enough”, get questioned when they enter public buildings with service dogs, and basically have to prove that they require the supports they need. For someone such as myself, no one questions the fact that I can’t see, but expresses shock at my hobbies, job history, or desire to live a “normal life” (the nerve of me!). So blind people get the short end of the stick on so many levels: we’re either visibly blind and are objects to be pitied or belittled or scorned or asked endlessly what happened to our eyes, or we don’t “look” blind and don’t deserve the accommodations to live our lives as productive consumers, employees, or citizens. Sometimes I wish I could hear “You don’t look blind”, but then I realize that it really isn’t a compliment… having to prove a negative – that I can’t see. And if you expect someone to identify themselves as blind by anything more than a cane or guide dog to travel safely… I seem to recall a system of forced self-disclosure about seventy years ago in Germany…

Why can’t I just Take it as Intended?

Part of communicating, and doing so effectively, is that the giver and receiver of communication both process it as intended. It isn’t easy to be public property, and everyone seems to have an opinion on what I look like, what activities I can enjoy, and if I can travel safely by myself) just because I am blind, and I look like it. I don’t have the time and mental energy to get angry at everyone who tells me how great it is that I have the teeny tiny bit of vision that I do (as though my life is more valuable than someone with none), who asks what happened to my eyes, who thinks there’s no way I can be competent and happy. Not everything is worth nitpicking over, because not everything is a fight. And yet… I am angry over something that’s supposed to be complimentary. Maybe it’s a bit of jealousy that my blindness is never ever questioned. Maybe it’s frustration over the fact that I am blind and travel with a guide dog (and before that with a cane) that makes me highly visible. Maybe it’s the fact that because I look blind I get treated like a child, and if I didn’t I would have to actually convince someone that I am blind because I am independent, competent, and can think and act for myself. So, yes, I am angry… Wouldn’t you be?

 

Other Perspectives

Thanks to those who’ve taken up this challenge as well. It’s not my challenge, but am glad for the alternate points of view. It makes for a nuanced discussion on this topic.

Charlie lives in the land of the visually impaired, too “blind” to be considered sighted and too “sighted” to be blind.”

Lauren describes conversations she has frequently and discusses the importance of not judging a book by its cover… or, in this case, a disability status based on outward appearance.

Ashley isn’t  offended by the comment itself, but the accusations of fakery followed by outright disrespect and discrimination that follow.

If at all possible, Buddy is more polite and more assertive than just about anyone on this topic.

Meagan asks an important question: What, exactly, does “blind” look like? And if you can’t answer that question reasonably…?

First They Denied Access…

09 Saturday Apr 2016

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

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

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

 

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

 

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

 

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

 

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

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

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

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

 

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

 

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

Do you See me with Vision?

26 Saturday Mar 2016

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

 

 

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

 

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

 

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

 

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

 

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

 

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

 

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

It’s Not About the Oranges

12 Saturday Mar 2016

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I never thought I would write a blog post about a fruit I seldom eat, but I also never thought that Twitter would nearly blow up over… oranges.

 

Whole Foods, an American grocery chain generally marketed to the upwardly mobile and/or environmentally conscious recently stocked pre-peeled oranges wrapped in plastic. The backlash on social media was swift: Who is too lazy to peel their oranges? And all of that plastic CAN’t be good for the environment… right? Whole Foods then issued a statement that the product was a “mistake” and they pulled it from their shelves.

 

In response to – if not defense of – this product, many people with illnesses or disabilities that make peeling and cutting fruits and vegetables a painful challenge (if not impossible) chose to use this as a teaching opportunity. I’ve written a bit about social media activism, and while an argument can be made that much of it might seem angry or whiny, I found the tone of this particular activism was more informative. It brought to the consciousness things I’ve never considered myself, because I’ve been blessed with two steady hands that make cooking and food preparation a generally (though not always) safe life skill. But what if I had limited dexterity or severe joint pain? What if I had to worry about coordination or seizures? I don’t live with these things, and that’s a blessing, but many people do… and many have articulated that products like this are accessibility needs, not wants.

 

Leaving aside the general price-points of high-end markets, I’ve enjoyed the general tone of this conversation, at least the respectful bits that discuss the seeming gap between environmentalism and access to healthy food. Whether Whole Foods put this product on their shelf, or another grocer somewhere else, the topic will continue to be brought up in various incarnations. What is the difference between pre-peeled oranges packed in plastic and pre-sliced mushrooms packaged the same way? No one bats an eye about that. How about personal servings of yogurt, pre-shredded salad mix, or juice boxes with plastic-wrapped straws? Many of these foods are considered “convenience” foods, and no one can argue that they aren’t as environmentally friendly as buying that big tub of yogurt or that large carton of juice. Convenience in and of itself isn’t always bad, especially if it makes life easier and healthy food more easily preparable for everyone. No one seems to bat an eye at these “convenience” foods as much as the oranges, perhaps because they are portable and self-contained right off the shelf. But I, for one, may never think of them the same way again. What if I couldn’t peel my own orange, for whatever reason? Would I have to try and hide my “convenience” food purchases for fear of being judged as not caring for the environment? Would I, as others have suggested, have to call someone over to my house to peel my apples for me if I get peckish in the middle of the night? Thanks, but no thanks…

 

The discussion that this little fruit has brought may never go away completely, and it’s not an either-or debate. The suggestions have been swift and numerous to intersect convenience, attainability, and environmentally friendly. Suggestions ranged from simply pointing out that there are worse or different ways of being poor stewards of the earth, to suggesting that some of the cost of pre-packaged food can go into research and development for more environmentally friendly containers and wrapping. None of this is a one-sided debate, because it is like comparing… well, apples to oranges. If I walk to a grocery store and buy some pre-packaged food, am I leaving more of a carbon footprint than someone who drives to the grocery store and buys all of their products in bulk? There are no easy answers to these questions, but the conversation is worth having. I may not be a card-carrying environmentalist, but I like to do what I can for the planet. And if someone wants to buy a pre-packaged salad, for whatever reason, it’s nobody’s business but theirs. Besides, if you want to raise a stink about plastic-wrapped vegetables, what about the plastic bag of chips in your shopping cart?

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…

Flying Blind

14 Sunday Feb 2016

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OK, I’m caving… since I’m a bit of a grump regarding all things Valentine’s Day, this should come as no surprise to people who know me well. For those of you who don’t, that’s OK… but you can send me chocolate or buy me a coffee if you love my Valentine’s Day post. 🙂

 

About a month ago, nearly a year after its publication, this blog post blew up twitter and Facebook. The rage was palpable from blind people all over the western world and from their partners, sighted and blind alike. I addressed many of these common perceptions  in my most popular blog post ever, so I won’t belabor the point here, but it came as a surprise coming from an organization that claims to serve the blind community.

 

English is clearly not this author’s first language, and it’s entirely possible that culture (in whatever context that is) played a role in the article itself. But I completely disagree with the idea of allowing partners (current or prospective) to be smothering and hovering – even a couple of times – until we prove to them that we are capable. Such behavior sets up precedent of one partner viewing themselves more capable than the other, due to the very nature of one partner having a disability and the other not. This doesn’t even address the idea that two partners can have a happy, healthy relationship while both having disabilities (some couples share disability, while I know others who have different ones). Either way, it’s incredibly presumptuous for anyone to think that all people with disabilities should have an able-bodied partner, or that we should “stick with our own kind”; both ideas are incredibly damaging both to our prospects for relationships and to our own autonomy in choosing partners.

 

Whatever our disability status and that of our partners, the important thing is to allow them to fly, not clip their wings until WE feel things are OK. I’m not talking about making wise financial choices about when one partner should go back to school, or keeping your spouse company while they’re cooking in the kitchen (because, like, couples should spend time together or something). In my own opinion, relationships are meant to strengthen each partner when the chips are down and life isn’t that great, to encourage each other when one or the other is struggling, to boost each other’s confidence in their own abilities and encourage each other to try new things. Any stifling, even under the guise of “protection” is almost counter-intuitive.

 

So for those who are in relationships – healthy ones, struggling ones, ones whose time is nearing an end – enjoy each other, not just today, but every day. For those who are single, by choice or by circumstance, I hope there are people in your life who will give you the wings to fly. To those who are happy, share it with others; to those who are hurting, someone – somewhere – wants to help carry you. Above all, after all the Valentine’s Day sweetness has faded, once the flowers have wilted and the candles have melted into small pools of wax, think of all those who love you now – your friends, your family, your partner (if applicable) – and those who haven’t yet crossed your path, and thank them for giving you the wings to fly. Even “flying blind” is safe when there are others who buoy you, encourage you, and help to heal any broken wings along the way.