Is This OK With You?

Tags

activism, anger, dignity, disability, hard truths, poetry

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.

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Book Review: Sensing the Rhythm

Tags

deaf, disability, hearing loss, music

I first heard the name of Mandy Harvey when I read and reviewed Erik Weihenmayer’s latest autobiography, No Barriers. I first heard her sing a couple of months later in a heart-stopping video performance on America’s Got Talent. When I discovered not long afterward that she had written an autobiography of her own, I scooped it up quickly. As a disabled person myself, and an (albeit out-of-practice) musician, I was interested to hear the story behind the voice and the performance that made me stop and take immediate notice.

Sensing the Rhythm

Finding My Voice in a World Without Sound

By: Mandy Harvey and Mark Attberry

 

The inspiring true story of Mandy Harvey—a young woman who became deaf at age nineteen while pursuing a degree in music—and how she overcame adversity
and found the courage to live out her dreams.

When Mandy Harvey began her freshman year at Colorado State University, she could see her future coming together right before her eyes. A gifted musician
with perfect pitch, she planned to get a music degree and pursue a career doing what she loved. But less than two months into her first semester, she noticed
she was having trouble hearing her professors. In a matter of months, Mandy was profoundly deaf.

With her dreams so completely crushed, Mandy dropped out of college and suffered a year of severe depression. But one day, things changed. Mandy’s father
asked her to join him in their once favorite pastime—recording music together—and the result was stunningly beautiful. Mandy soon learned to sense the
vibrations of the music through her bare feet on a stage floor and to watch visual cues from her live accompaniment. The result was that she now sings
on key, on beat, and in time, performing jazz, ballads, and sultry blues around the country.

Full of inspiring wisdom and honest advice, Sensing the Rhythm is a deeply moving story about Mandy’s journey through profound loss, how she found hope
and meaning in the face of adversity, and how she discovered a new sense of passion and joy.

 

Initial Impressions

 

I chose to listen to this book in audio format, narrated by Mandy herself. Mandy’s narration lends additional warmth to her breezy, accessible style of writing. I was immediately transported to an unforgetable performance where, without words, all musicians knew exactly where to be and what to do.

We are taken on Mandy’s journey with her – from the rapid decrease in her hearing to her time of depression to her discovery that she could still sense the rhythm of music. I laughed and cried with Mandy, and some portions of her journey really made me think. Even though the publisher’s summary talks a lot about inspiration and overcoming adversity, I found this short book more approachable and relatable than I expected to.

At the end of each chapter, there’s a section called “Making Sense of Your Rhythm”, which I personally found repetative and the only real drawback to the book. These sections summarize – and sometimes re-state word-for-word – portions of the chapter that has just been read. There are some questions to ponder, but overall I didn’t find those portions useful (though perhaps a print or eBook would include space to write down reflections and answer additional questions).

 

Disability Identity

 

Mandy chooses to communicate using sign language, something she thought was important to use during her performance linked above. Her deafness is as much as part of herself as her musicianship, though she’s received threats from some in the deaf community. Her thoughts on using identity-first language – referring to someone as a “woman” or a “sister” or a “colleague” and then only including the disability identifier if it’s relevant to the discussion – almost completely changes the person/identity-first language debate on its head. Months later, I am will pondering the implications of including disability descriptors of people in my life in this way.

And yet I found myself feeling a complicated sense of sorrow and frustration when Mandy relates her experiences in early college as her hearing loss was progressing. She asked for an accommodation to learn an assignment and was denied that request. When students stood up for her, she admitted feeling like a burden, feeling uncomfortable, feeling like her hearing loss made her stand out. I found myself relating to and frustrated by her feelings of her disability experience and the reactions of those around her.

 

More than Disability

 

Yes, Mandy is deaf, and yes, she’s a musician. But she has some insights about life that are not exclusively disability-related. In particular, I found her formula for success to be an incredibly insightful look at talent and determination. Her hard-won insights on supporting a loved one through a life-changing event – based on what she found helpful and what she didn’t – may not be revolutionary, but they are told in a gentle and powerful way.

Mandy neither makes herself out to be a saint or a martyr, but as a woman who has made mistakes and chosen to learn from them. There are some portions of her book that some might find preachy (Mandy is a born-again Christian), but they are generally interwoven with her own lived experiences, adding to their tapestry rather than jutting out at odd angles.

 

Conclusion

 

I usually prefer longer books and getting to know characters and real people. But Sensing the Rhythm is a short tome that I’m glad I picked up. I personally would have liked to hear more about Mandy’s band, how she works with them, more about recording music as well as performing. And the “Sensing your Rhythm” portions don’t detract from the book, but they don’t add to it either.

It’s not a literary masterpiece, but it can be as easy or as profound as you, the reader, make it out to be.

Much like all of us.

 

4/5 stars.

To the Parents of Blind Children, Part 2: Your Child Deserves More

Tags

autonomy, blindness, children, dignity, disability, independence, parenthood, parenting, pity

I stated in my previous post that I am not a parent. I will probably never know first-hand what challenges a parent faces. Throw an unexpected disability into the mix, and I can honestly say I have no idea what decisions I would reach or mistakes I would make. We are all human; mistakes are inevitable. But they don’t have to determine the course of a child’s life.

I’m a blind adult who has experienced the joy of being a child, whose parents truly did some amazing things to make sure I was as happy, healthy, and autonomous as possible. It wasn’t until I started high school that I began to realize that not all of my peers – especially my blind friends – were given such opportunities and freedoms. As I grew older – through my twenties and now that I’m in my thirties – I frequently notice a truly stifling dynamic toward blind children by their parents. Will some parents be helicopter parents anyway? Absolutely! But when there’s a clear difference in how siblings are treated along disability lines – something I observe regularly – it becomes abundantly clear that blind children are frequently short-changed.

It doesn’t have to be this way. Your blind child deserves so much more…

 

Your Child Deserves more than A Diagnosis

A diagnosis of vision loss can be devastating, or it can offer a sense of relief. it should neither be hidden from your child nor the focal point of everything they do. I have several friends who struggled so unnecessarily as adults because their parents chose to withhold their child’s vision-loss prognosis from them altogether or denied their child’s expressions of frustration about not being able to process visual information. Others struggled to learn the life skills their siblings learned by imitation because their parents feared their lack of vision would make the tasks impossible. Many have expressed to me that they would have felt less alone if their parents had chosen to be open about their medical information, and they would’ve felt more secure in the world if they didn’t have to learn basic tasks as an adult because their parents were so “stuck” on their blindness. Growing up is enough of a challenge without having to overcome years of denial and lowered expectations.

Vision impairment or blindness is not the only aspect of your child’s growth and development. Just as your height or race or gender is one aspect to your humanity, your child’s blindness is only one lens through which they experience the world.

Your Child Deserves More than Hope for a Cure

I’m one of those people who would not want a cure for blindness if such an opportunity presented itself. Even with my limited vision, I find visual input extremely overwhelming, and the idea that I am broken because my eyes are is truly bizarre to me. And yet I truly respect the desire that some have to regain the use of vision they or their children have lost, or halt the progression of the deterioration of their visual world. Ultimately, the hope for restoring or improving vision should never be at the expense of showing a child how to live confidently and successfully in the here and now; in no way are the two mutually exclusive. Just as a child with diabetes can hope for advances in science and technology to improve their condition and the care of it as they grow older, they still have to learn to monitor what they eat, be aware of their body’s signs of illness, and advocate for what they need if they need to, a blind child can do the same. Why does blindness sometimes facilitate hope for the future at the expense of the present?

But some parents (and medical communities) look into the future and see only fear. The fear of blindness itself. Some fear blindness SO much that they gamble with their child’s life.

One cause of blindness in children is retinoblastoma, a malignant tumour that begins in the retina. Because the tumour can spread to other parts of the body, it is frequently necessary to choose between radiation and the removal one or both eyes when the child is very young. Some parents – on the advice of a medical community that frequently view life without vision is worse than no life at all – choose to take drastic measures to save their child’s vision rather than their life. Is vision really worth more than a full and complicated and messy life? More than a life like the one that you live?

And yet, there are some parents who I can only applaud. They are choosing to treat their daughter’s retinoblastoma with a revolutionary treatment. I not only admire them for their hope and belief in the progress of medical treatments, but because they want to save their daughter’s life and her vision (because, at this point, her vision seems unaffected by the tumor). A quote from her mother in the above article has stayed with me since I read it: “I know that Dania will be successful in whatever she does and if she does have her eye or if she doesn’t have her eye, I think she’ll be fine.”

She will be fine.

Vision is never ever ever worth more than a life.

 

Your Child Deserves More than Isolation

Sure, some kids are introverts, some are extroverts. I happen to be an incredibly outgoing introvert, which confuses people on many levels; it wasn’t until I was in my mid-twenties that I truly began to embrace my introverted personality, and I find myself better for it. These days, I’m an adult, and I choose when and with whom and for how long I interact. But when I was growing up, I was greatly encouraged to be social, and there were many neighborhood children who were willing to hang out with me. Sure, I didn’t “get” cartoons – even as a child, my idea of “entertaining” TV was an episode of “Jeopardy!” with my parents before bed – but when I had more vision I was more than content to rollerblade or ride my bike or traipse around the neighborhood with my friends. When it came to school, I was content to do my own thing on the playground – sometimes with other kids, sometimes without – but I didn’t make a solid group of friends until high school. I hung out with the science nerds who were more content to get good grades than to party on the weekends, and that suited me fine.

But even as a teenager I noticed how frequently my other blind friends isolated themselves behind books and games and computer screens – not necessarily because they wanted to, but because they felt too awkward to approach their peers (and, in Canada, most of your peers are people who can see). Sure, even the most outgoing person faces insecurity about how they are perceived, and I would never presume that unhealthy or bad “friendships” are better than no friendships at all. But many of my blind friends were left on their own in their rooms to read or chat online or otherwise isolate themselves while their siblings were encouraged or supported to go out there and hang out with their peers. As an only child who saw many sibling dynamics play out, those between my blind friends and their sighted siblings – and how their parents frequently treated their social development – stood out in stark contrast to me.

Of course, social development can never and should never be forced. I hated it when a teacher singled me out (on the rare occasions they did) for other students to work or play with me. My friend Meagan has poignantly described the dynamic she faced as an introvert who was strongly encouraged to go make new friends, and I would never belittle “Internet Friendship“. But she also describes the socially awkward behaviors that continue into adulthood when there is no sense of meaningful communication of any type with a peer group. And all children deserve the opportunity to socialize naturally (not forcibly) with their peers.

 

Your Child Deserves More than Learned Helplessness

I wrote above about how I have witnessed a troubling pattern of parents doing everything for their blind child. Of course, there is always a learning curve to mastering new tasks  – whether you’re sighted or blind, a child or an adult – but never giving a child the freedom to succeed or fail doesn’t enable them to learn the skills they will need for adulthood. My friend Holly wrote about parents being completely unaware of the advances in technology that have enabled blind people to live, study and work independently and effectively. Of course, not everyone is going to be aware of everything out there, and not all technology is great, but even having an awareness of what’s on the market can greatly increase the future prospects for your child. But a more troubling conversation was detailed in Holly’s post, particularly as it pertains to parents cleaning up after their blind child, even going so far as to enable their child to spit toothpaste into the bathtub instead of the sink because it would be easier to clean. When it was pointed out by blind adults that such behavior is not only socially inappropriate, but sets a very low expectation for a blind child, there was a tone of defensiveness so strong that some chose to leave the conversation altogether.

OK, so you don’t go that far… but how often do you swoop in at the first sign of your blind child struggling with a skill or task? Do you tell them you don’t want them to cook in your kitchen, travel independently, or try a new hobby they might enjoy? I know many blind children – who are now blind young adults – who still struggle to learn new skills or try new things because they spent so many years being told “no”… for no other reason than because they are blind. Some teach themselves how to live independently, others learn these skills at a training program far away from home, and still others simply allow this dynamic to continue.

It should never be this way.

 

Conclusion

Do you hope for good things for your sighted children? An education, a place of their own, a life partner, children, travel, a good job, a healthy social life, hobbies they enjoy? Most parents do. Any and all of these things are possible for your blind child as well, and you have the power to either stifle them or feed them until they grow into beautiful fruition.

There are many blind adults who have come from environments like mine, like Meagan’s, like Holly’s, and those that have struggled with the family dynamics I’ve listed above. Many of us are open to talk, to listen, to answer questions. Some of us may know what it’s like to be a parent; some of us don’t. But we know what it’s like to be blind, and many of us would be open to helping you help your blind child flourish and succeed.

To the Parents of Blind Children, Part 1: You have SO much Power

Tags

advocacy, blindness, children, disability, education, expectations, parenthood, parenting

Parenthood is a joy and a challenge for most parents. You question yourself, second-guess decisions, worry about your children, and hope that they grow up to be happy, healthy, productive members of society. But what happens if your child is born blind, or becomes blind due to illness or accident, or whose vision decreases over time? Do those worries disappear or amplify? Do those hopes diminish?
I may not be a parent, but I’ve been the child of parents. You may not be blind or know blindness firsthand, but I have, and so have many others who have contributed ideas to this post and the ones that will follow in the coming weeks. You may only recently have received news that your child won’t see the way “typical” children do. You may have fought for a diagnosis or it may have been immediately apparent. Whatever the case, you, as a parent, have both the responsibility and the power to teach your blind child ways to adapt to a world that doesn’t keep them in mind.

 

You have the Power to Educate

 

Education is a hot-button topic for many parents. Do you send your child to a public or private school? Is homeschooling the best option? If your child is blind, will they receive an equal education at a school for the blind or at a mainstream school? Many parents of blind children emphasize academics; they realize that blindness does not in and of itself impair intellect, and greatly encourage academic pursuits. Most encourage braille literacy, with which I am in full agreement. As important as education is, it’s also important to listen to your child, to learn their gifts and talents and skills, and not push academia for its own sake. Maybe they want to work with their hands, to become a stay-at-home parent, to create or invent things. If you have sighted children that have the space and encouragement to try new things, to succeed and fail, then don’t deny this to your blind child. Education is important, but higher education is not the only way by which your blind or visually impaired child can succeed.

 

You have the Power to Empower

 

Education itself is not limited to the classroom. Children frequently want to explore their surroundings, to learn new skills, to ask questions and get answers. Often times, it’s parents that quell a child’s curiosity because something’s too “dangerous.” Of course this happens with sighted children, too, and of course some activities are dangerous or scary and should be approached cautiously. But experiencing new things is scary for everyone, sighted or blind, and sometimes we do those scary things anyway. You worry about your sighted child riding his bike for the first time, or taking their driving test. Of course you worry when children are young and impulsive and inquisitive. It’s only natural. But blindness doesn’t make a child more of a safety risk than sighted children. You can empower your blind child by harnessing his or her curiosity in productive ways, encouraging them to dream, and letting them make mistakes without swooping in at the first sign of trouble. You, parents, have the power to clip your child’s wings or let them fly.

 

You have the Power to Inspire

 

When you think of famous blind people, who comes to mind? Stevie Wonder and Ray Charles both made enormous contributions to the music world. Louis Braille invented the braille code, which allows blind people all over the world to read and write in a wide variety of languages.

But beyond them, blind people have always lived among us. Would you be surprised to know that the inventor of cruise control was blind?

Many of these stories have in common a determined parent (sometimes more than one) who encouraged their child to learn, to dream, to work hard, to persevere.

Blind people are currently holding down successful jobs, serving in political office, raising families, running businesses, volunteering in their communities, climbing mountains… the list is endless. There are blind people in your own community who are shattering stereotypes, working publicly or behind the scenes to make the world a more accessible and inclusive place. And you have the power to encourage your own blind child’s hopes for the future and the world in which they will grow up and live.

 

You have the Power to Foster Independence

 

Most blind or visually impaired children are provided with aides to daily living by state, provincial or federal sources. Whether this independence comes in the form of a white cane or a monocular, or later a guide dog, it’s your blind child’s ticket to independence and self-sufficiency.

Not only that, but skills like cooking and cleaning are essential to being the member of any household. Sighted children model what their parents do; blind children need that instruction as well, because most will want to live independently. Not all will be great gourmet cooks or the best housekeepers in the world, but it’s important that they know the skills. And if you can teach and model for a blind child’s sighted sibling, you should do no less for your blind child. Siblings notice inequality, and rightfully would be frustrated at lowered expectations for their sibling. If you’re unsure where to turn, there are blindness organizations with trained staff to help; if those services don’t work for you or your family, the Internet and social media have opened up a wide variety of tutorials and social networks and can get you in touch with blind people themselves who’ve learned to live life non-visually.

 

You Have the Power to Advocate

 

As your child grows up, they will likely encounter misunderstanding, inequality, and ableism. When your child is too young to understand these things or express their feelings articulately, it’s up to you to include them in school or church or extracurricular activities. As they grow older, they will begin to model advocacy from what you taught them, and if you teach them both in word and example that they are equally as gifted, valued, and important – with the responsibilities that accompany that knowledge – as their sighted siblings, classmates and friends, the more they will believe it themselves. They will then go on to advocate competently and articulately for their needs as they continue on their life’s journey.

 

You have all of this power! The power to shape your blind child’s life just as you would have if he or she were sighted. My next post will address what is sometimes accepted as a cheap substitute for this power.

 

I would love to hear your stories about how you were raised as a blind child. Or, if you are the parent of a blind child or children, what do you wish you had been told at the beginning of this journey? Do you wish your relationship with your parents/child(ren) (as applicable) were different? Parents, are you using the power you’ve been given as a parent, or are you trading it in for a consolation prize? As a blind child, did your parents empower you, or did you need to fend for and empower yourself?

Your stories are important – as parents, as children. Lack of sight does not mean lack of potential, lack of dignity, or lack of worth.

“Sorry, not Interested!”: How Disability advocacy Is a LOT like Telemarketing

Tags

allies, disability, equality, perception, rejection, support, telemarketing

Not long ago, I spent several months as a business-to-business telemarketer. It was, by far, the most challenging – and in a way the most empowering – job I ever had. Sales doesn’t come naturally to me, but it was a skill I wanted to cultivate. But as with my ability to grow plants (I think about them and they die), my sales skills looked a little bit scraggly by the time another – more well-suited – opportunity came along.

But during those few months, I couldn’t help noticing how telemarketing is a lot like disability advocacy, and in some unexpected ways.

 

Read your Audience

 

When you make a sales call – any kind of sales call – it’s not enough to be friendly. In fact, if you’re too friendly, you can come across as sleazy or a pushover. Conversely, you can’t be too aggressive, because pushiness can be spotted a mile away. No one will buy your product or book an appointment with your service if you make them feel like you’re only in it for the sale. Even slight word changes can be the difference between making that sale and pushing a prospective buyer away.

Similarly, there are so many ways to do disability activism, some more successful than others. The “friendly educator” may get some individual positive results by remaining peaceful, while still feeding into the narrative of disability equating to docile compliance. But the chip-on-the-shoulder anger – over everything – can create equally damaging results, thrusting aside barriers while simultaneously alienating the very people to whom we are advocating.

Whether in sales or activism, it’s important to read an audience. Some people will respond to friendly coaxing; others do require a more forceful approach. In either arena, I have found that reading a situation will likely provide better results than a one-size-fits-all methodology.

And yet, no matter how one presents oneself, it’s important to be authentic; people can see a phony mask of sincerity or bravado a mile away, and few things shut them down more quickly.

 

It’s Hard, Dirty Work

 

When I was making sales calls, I felt a certain sense of shame surrounding the work I did to make a living. There’s a huge stigma around cold-calling unless it’s only one part of multi-faceted job duties. It’s not a warm-and-fuzzy industry, and it has been given a bad name by disreputable companies with pushy sales tactics and unethical practices (for the record, I worked for a company that strongly stressed ethical conduct). You make call after call after call, hoping to build enough trust and rapport with each contact to get that sale. If you are successful enough at it, your success can buoy you up when inevitable rejections drag you down. But your job – day after day after day – is to try and try and try again.

In a similar way, unless disability issues directly affect someone, few people seem to want to discuss activism. The main disability narrative – of recipients of charity, of helplessness, of pity – doesn’t leave much room for strong, vocal or visual opposition. And when this gets brought up, it frequently feels like we’re speaking into an echo chamber and hearing the sounds of crickets in response. Sometimes it feels very very thankless and exhausting, and many people seem to think that it’s our full-time job to educate the public on an on-call basis with no compensation – material or otherwise – for it.

 

You’re doing it Wrong!

 

There’s always a peanut gallery. It can be both a huge benefit – for encouragement and solidarity – and soul-destroying because of all the second-guessing. In sales, you’re either not pushing hard enough, not creating your own opportunities, not getting the job done. On the other hand, you’re wasting your time on prospects that are just too polite to tell you “no.” In disability spaces, I’ve seen so much finger-pointing. We’re “too pushy”, “too soft”, too understanding, or won’t just let it go, cut our losses and move on. And while I’m all for “best practices” (they’re important to provide some guidance) we all have our unique style of doing things that can still get the job done even if our colleague doesn’t do things exactly the same way. In fact, my successful sales style – and activism style – will differ from someone else’s. And I think they should; that doesn’t make any particular style wrong or bad, just different.

 

Some people Just Won’t “Buy it”

 

In sales, you can do everything right, and still your prospect isn’t interested. It’s not personal, not about you, and there’s nothing you can do about it.

Sometimes you make your “sales pitch” at inopportune moments, and sometimes – no matter how gentle you are – any pointing out of inequality or access concerns are just not ready to be received. This doesn’t mean we stop trying; it may mean we need to reflect on our strategy, ask some probing questions, or – in some situations – make an executive decision to cut our losses and move on.

 

But There are Those that Will

 

Acceptance can come from some truly unexpected places. I called one company just after they’d watched a Youtube video put together by the company I was fundraising for. They were so startled by the coincidence that they threw a huge commission my way; it was the biggest sale I ever made, and it came out of nowhere.

Sometimes, it’s easy for people with disabilities to constantly be in “fighting” mode (to maintain our right of equal access, personal autonomy, or basic human respect), and we can lose sight of the people in our lives who do “just get it”. Sometimes, they come from unexpected corners – from the teacher who asks great questions to the parent who both nurtures and empowers to the friend who knows how to do just the right things at just the right time to the stranger who asks how they can help and respects our reply. Sometimes, we write off opportunities so easily because we feel so discouraged by all the rejection and mental gymnastics just to get through the day. And yet, those moments of brilliance, of comeraderie, of success, spur us on to keep trying.

 

So What do we do from Here?

 

Even seasoned sales reps need to fine-tune their pitch to connect with prospective donors or buyers or customers. Just because something used to work doesn’t mean it will be effective next month or next year. Similarly, I do think disability activism may need a facelift as well, to allow each of us to self-advocate in the way we do best without pointing fingers at how wrong everyone else is. Sometimes aggression is necessary, and sometimes it gets in the way; sometimes we swat flies with a sledgehammer when luring them with honey would’ve been better, and sometimes we let things go that we probably shouldn’t. But the best salespeople – and the best disability activists – are always learning and questioning, fine-tuning their craft. Even though my days as a telemarketer are over, I’m still an advocate for myself if no one else. Everyone hears “no” sometimes, and, in my case, far too often it is because of my disability; but hopefully with more of those great people who do get it, we’ll soon live in a world where there will be more “yes”s than “No”s, and the “no”s are based on facts and bad timing, not negative perception.

Your Fear is Not my Reality

Tags

dignity, disability, Disability Employment Awareness Month, employment, fear, speaking

I was recently given an opportunity to speak at a conference attended by (among others) social workers, HR professionals, mediators and educators. To share a platform with so many innovative thinkers (some of them well-known) was an incredible honour for me.
After I spoke, regarding (primarily) disability and employment, I took questions from the audience. One of the questions has stuck with me in the weeks since that conference.
Is part of the problem the fact that people with visible disabilities embody a very real fear of one’s own potential of acquiring a disability? When facing the embodiment of that fear, do we project our fears onto that person because their reality scares us?

I had to pause and think.

The reality is, we all – as human beings – have things that scare us. Some of us are afraid of heights, while others can jump out of airplanes. Some of us love traveling, while the idea of leaving the comforts of home is terrifying to others. There are gourmet chefs out there who know people who are afraid of burning the house down if they turn on the stove. Whether fear is rational or not, it’s there, and fear is human.

How it relates to disability?

It seems that fear of one’s OWN disability – because it could happen to anyone – IS projected onto the person living that life. You are not likely – at age twenty or forty – to suddenly wake up in the morning and learn you’re Caucasian rather than the African-American you always believed yourself to be. Nor will you wake up tomorrow and suddenly find yourself – at thirty or fifty – attracted only to men when you’ve been attracted to women your whole life. But you could, conceivably, find yourself either physically or mentally impaired or disabled due to any number of variable causes from medical misdiagnosis to vehicular accidents, assaults, or any number of other biological or physiological factors. It’s true that disability shows no particular favoritism; it IS the only group that anyone can join at any time.

To avoid the disability label, sometimes people go to extreme lengths. Vision can be viewed as sacred, even at the potential of costing a child’s life. Disabled people frequently hear that a person they are talking to would rather kill themselves than be disabled.

Is disability so hard, really?

Or are attitudinal barriers – piled on to the challenges of disability itself – really what’s hard about living with a disability?

These thoughts all jumped around in my head as I stood in front of all of those people. I said some of the following in response, and wish I had said more.

Fear of sudden disability onset IS terrifying. If I woke up tomorrow and I couldn’t move my legs, or if I couldn’t hear my husband speaking to me, I would be devastated. I would try and find out anything I could to make things different. If they couldn’t change, if my condition became permanent, I would be sad and angry and terrified. Any major life change IS difficult, and people who recieve a disability diagnosis will go through stages of grief and recovery and acceptance.

That is human.

What ISN’t reasonable or fair is to project your human fear of going blind tomorrow onto the reality of my existance. The resume on the table in front of you is just as present as I am sitting across from you; the two are not mutually exclusive. I’ve had years to learn and to grow, just as you have in your own way. Disability does not automatically stunt one’s emotional growth, though the prejudices and fears of others can stunt professional or academic growth for us.

Your fear of imminent disability is not the reality I live with every day. If I scare you that much, is that really about me?

And yet I take the fall for it. My disabled friends take the fall for it. We get passed over for job after job, for opportunity after opportunity, not because we don’t have the skills, but because of someone else’s own personal fear.

It’s time to put fear where it belongs, into perspective. Just as I doubt I will ever know what it’s like to be a Sumo wrestler, or the CEO of a Fortune 500 company, you may nevver know what it’s like to be blind. And that’s okay. You can wonder what YOUR life would be like if you went blind tomorrow, just as I can ponder what I would do if I lost my hearing. But what I cannot do – and what you must not do – is to take those fears and questions and uncertainties and place them on the shoulders of those who embody that reality. Our shoulders are not meant to bear your fear, but our hands are capable of providing help and guidance and productivity to your organization, your school or your company. Maybe in ways you never would expect.

“Um… Dad? I got a Tattoo…”

Tags

autonomy, dignity, disability, Jenny, personal, tattoos

I recently celebrated a birthday. I chose to celebrate it by attending a stellar performance of “Phantom of the Opera” with my husband and a good friend, silencing my phone’s frequent ringtones heralding “HAPPY BIRTHDAY!” messages from all corners of the technological world, and capping it off with a personal-best-speed 6-mile run. In the midst of all this, I received several birthday wishes and instruction from my father, that I could get ANYTHING I wanted…. except a tattoo.
That’s great!
because… I already have one tattoo… and I don’t want any more.
When I told my father this, he seemed surprised. “How did that happen?” he texted me.
Well, in the manner of all things sarcastic, I texted back that I consulted a tattoo artist, had a design drawn, sat in the chair, and got it done.
Isn’t that how all tattoos “happen”?
I never intended to keep my tattoo a secret. In fact, my dad reads my blog; I mentioned it here. But for people who’ve just met me or don’t read my blog or missed the whole half-a-sentence mention my tattoo got six months ago… here’s some details!
I chose to get it where it can be concealed in the workplace and shown off in a more casual summer atmosphere. Originally I wanted mine on my shoulder blade, but many friends told me in general tattoo-based conversations about their shoulder pain horror stories, so I nixed that idea. At the time I was working in business-to-business sales, and many colleagues had tattoos. I asked a couple of them where they got theirs done, called a couple of shops, and went in for one consultation.
I know many people who have TONS of tattoos; others are terrified of needles. I fall much closer to the “terrified of needles” camp, so I was kind of scared to get this done. Several friends (blind friends in particular) asked me about my experience getting a first tattoo, if it hurt, what my artist was like, how I knew things would be OK… the whole bit. I had to think a lot about it, because I lucked out; my one consultation was so easy and fluid that I never even considered getting another.
When choosing a tattoo artist, you’re effectively finding a doctor, a therapist and a graphic designer all in one. It’s an intensely intimate process and both artist and “canvas” need to be able to effectively communicate, otherwise…. not-cool things could happen… and they’re pretty permanent!
When I walked in for my consultation on an unseasonably warm Friday in January, I had no idea what I would be getting myself in for. The entire staff was warm and welcoming, and Jessie (the artist who would design and place my tattoo) and I sat and chatted about what I wanted, where, and how she could best describe her design for me as a blind customer. I’m pretty no-muss-no-fuss, and I wanted something I would be happy with but that wouldn’t be too elaborate (see above comments about needles). It was one of the easiest service-provider/customer conversations I’ve ever had in my life, and I knew I’d found the right tattoo artist. Money was pretty tight at that time, and so I told Jessie I would give her a call once things picked up and I could justify the expense, but I definitely wanted the tattoo. Not three weeks later I got my current job offer, paid my deposit, and asked for Ben’s thoughts on some drawings. He wanted his own tattoo, but different from mine, and on the first concept drawings Jessie hit the ball out of the park for both of us.
The designs had been chosen, I left Jenny at home, and I made my way back to the tattoo shop. I don’t know what I expected (some cubicle-style room with a curtain across it? Dingy dark corners where tattoos are applied in secret?) but the open airy room I entered with huge windows along the back wall definitely wasn’t it. While I was nervous about getting the tattoo, Jessie was great about putting me at ease. I even got to put on gloves and feel the tattoo gun (without needles) as it vibrated, and touch the needles in their sterile packaging. As I sat in the chair, Jessie went to work, describing everything she was doing, giving me fair warning if she was using a different needle (yes, they feel different), offering me a break if I needed. We talked about other things, too, like good food and dogs and work and business ownership… life, really. The time flew by, and while the tattoo application hurt a little, it really wasn’t that bad. Just over an hour after we got started, a bandage was placed over my freshly-tattooed skin, and it was done.
I remember telling Jessie at the time that I seriously don’t think anyone has ever just “gotten” communicating with a blind person so well. She admitted to feeling slightly uncertain about how much information to give, but she knew that everything she did would have to be described. One never would have guessed that I was her first blind client, though not her first with a disability (she mentioned having done piercings and tattoos for Deaf clients). Not only did I get a cool-looking tattoo, I got the seamless experience – the true luxury – of not having to explain anything at all about blindness or accommodations or humanity and disability. Remember when I wrote about a tattoo artist being like a doctor, a therapist and a graphic designer rolled into one? I hit the jackpot.
So, if you’re in Edmonton, hit up Jessie at Shambhala Tattoo. Tell her Jenny sent you… because, in a way, she did.

 

My tattoo of Jenny’s paw print with her name inside it

 

 

Raising my Voice: My Thoughts on the Proposed Canadian Service Dog Standards

Tags

advocacy, Canada, dignity, disability, service dogs, standards

*** UPDATE: As of April, 2018, the proposed standard has been withdrawn and the CGSB is not planning any meetings at this time.

 

We’ve all seen the news stories about people bringing their pets into public spaces and pretending they are service dogs. We’ve all been angry at the dishonesty, the danger to ourselves and our legitimate service dog teams, and have various ideas on how to combat this. Some propose service dog registry and identification; others place the burden on businesses to exercise the rights they do have (notably to ask the handler of an aggressive or disruptive dog, service dog or not, to remove it from the premises), rather than the people with disabilities who depend on service dogs to live fulfilling independent lives. Still others want governments to take action.

In Canada, an organization in the Public Works and Government Services (not a government committee) – made up of representatives from service dog training organizations, veterinarians, advocacy groups, regulatory bodies, and individuals – has been hard at work for two years to create a national standard for service dogs. Their stated objective is to provide a universal standard for service dog teams. Over the past month, many friends and advocacy groups have sent the draft standards to me, advising me that there is a public consultation phase that ends on July 14. As I know several groups and members who have helped draft this proposed standard, I chose to take my chances and hope for the best. But as emails and facebook posts flooded my phone and computer this past weekend, I realized that I couldn’t bury my head in the sand anymore. I had to figure out just why my phone was going crazy.

I read the standard, beginning to end, and will be submitting my comments to the board.

What The Committee Is Not

This is not a bunch of egotistical, evil people out to make life harder on service dog teams and handlers. While training programs had voting power, other advocates, professionals and owner trainers had votes in the meetings as well. This is a large group of people, all of whom have valid concerns and objectives: to make sure service dogs, handlers, and the general public are safe. If you choose to comment on this post, please be forewarned that I will delete any personal attacks against the committee or disrespectful talk about how you will never visit my country. If you can’t offer anything constructive (be it praise or criticism), keep it to yourself.

What this Document Is Not

This document is not current legislation. Even if it passed as is tomorrow, it is not law. While it may be used to create universal legislation across the country (so that someone in BC won’t undergo stricter scrutiny when they travel to Saskatchewan), legitimate service dog handlers can wake up on July 15 (after the open consultation period) and go about their lives, hopefully with no public interference.

This document is not a declarative statement on where a Canadian can train for a service dog. I’ve seen a ton of fear-mongering on this topic, that the board is saying Canadians can’t train in the States, and no where is this stated or implied. Guide and service dog programs may be concerned about their ability to serve Canadians due to the standards, but the standards themselves, as written, do not restrict location of training. There are enough legitimate concerns in this document without creating more.

This document is not permanent. That’s why it’s called a “draft”. For future readers of this blog, anything written below is paraphrased from the draft standards published on May 2, 2017. It’s a living document; it will change. We as Canadians can make our voices heard by providing feedback through the Web site. We have an opportunity to push for change, to offer suggestions, in a way that is seldom available. Take it!

What They Got Right

This document is thorough. Whether you agree with it or not, it’s a long comprehensive document. People with a wide variety of disabilities are represented, along with a non-exhaustive list of tasks their corresponding service dogs can perform. It touches on everything from training and behavior to realistic expectation, equipment fit, first-aid… I could go on and on. No one can accuse the standards board of not considering any situations. The needs of both service dog and handler are referenced throughout, with great emphasis being placed on the biological and emotional needs of the dog. The rights of persons with disabilities to access public spaces safely with their service dog are well-documented.

Unreasonable Intrusions

But while it’s clear these standards indicate that handlers should have realistic expectations about their service dogs performing learned tasks or learning new ones, their expectations of obedience are higher and, frankly, not as realistic. According to the draft standards, a service dog must respond immediately to obedience commands, on or off-leash,  in all conditions and circumstances. While later in the draft, there is mention of intelligent disobedience (when a dog disobeys a direct command when it is unsafe), the words “under all” do appear related to obedience (Section 4.2.2).

But what is not specified anywhere in this document is who can assess – and how frequently – whether the handler has “enough” knowledge on any of these things, or when the dog is obedient “enough”, even off-leash, in the home? It does appear that an assessor will at some point enter the home of a person with a disability, just because they wish to use a service dog, and I do wonder about an intrusion of privacy that no pet dog owner has to undergo.

There is also particular concern about the equipment used by a service dog team. Based on the current draft, any slip collars, E-Collars, prong collars, or muzzles would not be considered appropriate equipment (section 5.2.1.1). While I personally have strong opinions on my dog with equipment, it is not my place to judge another handler’s appropriate use of tools; even a flat-buckle collar can be used in an abusive manner. I have used a head halter (frequently mistaken for a muzzle, even though my dog can fully open her mouth while wearing it) to re-shape behavior; this standard does not address that at all. If we are responsible enough to handle service dogs in public, we should be treated as responsible enough to use appropriate tools humanely to mitigate behavior or receive tactile feedback.

A brief note about identification: several people think identification is a good way to weed out the fakes. Section 7 addresses the information that would be made available on identification (on a service dog’s harness/leash, or ID card carried by the handler). It does not appear to provide provision for those who wish or need to make their own equipment or buy from manufacturers whose equipment fits their unique needs as a service dog team, but does not readily identify “service dog”. These draft standards do not – nor can they – address who can ask for service dog team identification, under what circumstances.

One of the many other concerns I have is statements regarding separating dog and handler. Section 5.2.3.3 states that the service dog will “tolerate” removal from the handler (by whom?) when required by circumstance. The draft indicates this will be inspected (section 8.2.2.3) by having a person unknown to the dog promptly remove the dog from the handler and walk away a minimum of 6 meters. While I understand this is to test for aggression, as a visually impaired person who has had her dog forceably removed from her, this is traumatic, and does not show compassion and understanding (as stated in the goals of the inspection). As an aside, my dog might be tolerant of being separated from me, but I wouldn’t be! It would be like someone driving a car and the passenger just ripping off their glasses.

Other Concerns/Questions

A few questions I pondered while reading the standards. At what stage of the service dog’s working life these inspections are administered. What do owner trainers do? Where are the inspections held? How frequently? Who pays for travel? Does the handler have the right to access public spaces before the inspection? Does a Canadian who receives their dog from an American source have to undergo additional testing? So many more questions about the logistics that the standards themselves cannot address. They are only the first step in a complicated process which will need regulatory and legislative bodies to implement and enforce. Many (myself included) have grave concerns about the implementation of the standards. These concerns are not without merit. But at the end of the day, these standards can provide a foundational framework in which all service dogs, handlers and the general public can feel safe alongside each other.

So where do We Go from Here?

I will not throw the baby out with the bathwater. I have had friends whose service dogs have had to retire because of attacks by overly stressed legitimate service dogs or encounters with out-of-control pets in vests. Standards, by themselves, are not a bad thing, and I do see some value in these proposed standards of behavior by both handler and service dog. However, I think there needs to be much more clarity about the inspection process and the access rights of a person with a disability using a service dog. If someone owner-trains their service dog and/or uses third-party equipment without “service dog” markings, are they still protected by each province’s Human Rights legislation? If so, then there needs to be more education of service providers about when a disruptive or aggressive service dog team can be asked to leave, and more teeth to penalties for impersonating a person with a disability to take a pet dog into public.

While I believe there is the best of intentions for this standard, I question its enforceability and the potential intrusion it places on the lives of people who already receive strict scrutiny. While the commentary period is open until July 14, raise your voice in constructive ways. Don’t only point out what’s wrong, but how it could be better. And above all, don’t forget to indicate what was done right.

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

Tags

autonomy, disability, grabbing, hard truths, respect

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.

Removing the Bubble Wrap: Freedom to Fail

Tags

disability, effort, perceptions, perfectionism, protection

When you think of disability, what do you think of? Do you think of struggle, tragedy, inspiration? Do you think of incompetence or hope? Do you feel the overwhelming need to protect people with disabilities from all harm?
None of these – tragedy, protection, inspiration, incompetence – are what disability is about. It’s the only condition that transcends ethnicity, nationality, race, religion, gender, age, sexual orientation or economic status.
Disability IS humanity.
So why do we in the disability community – whether we’re disabled ourselves or are a loved one, teacher, spouse, or caregiver of someone who is – swing to the extremes of over-achievement and low expectations?

Those who know me well (OK, and if I’m honest, even those who don’t) learn pretty quickly that I’m a perfectionist. I like to do things well because I hate backtracking and doing my work over again. I’d like to think I’m more tolerant of the true limitations, weaknesses and eccentricities of those around me than I am of my own, but the jury’s still out on that. This isn’t to say I agree with lazy or apathetic attitudes (I don’t), but I realize we’re not all blessed with the same personality traits, gifts, skills and talents.
But why do we raise or lower the bar only because of disability? How can parents sometimes deliberately make their blind child stand out by not teaching them how to perform basic living tasks? And what makes us, as disabled people, feel the need to do absolutely everything perfectly by ourselves just because it can be done? Why do we believe the lie that we cannot fail at anything? Ever?
I’m currently working in a field that does not come naturally for me. It’s uncomfortable. It’s discouraging sometimes (okay, a lot of times). But in an odd, uncomfortable way, it’s also been the most empowering experience of my life. If one day it reaches the point where it’s not working out, I can honestly say that I threw my whole weight behind it… and I didn’t give up. I’ve been publicly compared to Rocky Balboa, and I wear that badge proudly, with the metaphorical black eye, split lip, and everything.
Why do I do this?
Because far too frequently, I’m not given the chance to succeed or fail on my own merits. I’m either not given an opportunity at all because of the preconceptions of my blindness, or I’m told that any effort I give is good enough. Both are wrong. Often times, people with disabilities are robbed of a crucial part of a growing process because these opportunities are denied us by those who “mean well.” We’re not wrapped in cotton, we’re not precious little beings who need to be patted on the head for every little thing we do that our non-disabled classmates, coworkers, or friends do just because its expected. We’re not achieving something simply because we do it “in spite of” or “because of” our disabilities. We are people, period, and we should be able to embrace our talents, be encouraged to make an effort to expand our horizons, and be met with the inevitable challenge of falling flat on our face sometimes.
So throw away the bubble wrap. We’re going to get hurt sometimes. But look back on your life. Tell me, what are the times you grew the most? Was it the time when things came easy to you? Or the times you looked yourself in the face (metaphorical black eye and split lip and all), squared your shoulders, and told yourself that you’d give it one more try?
Disabled people may need help with some things, with some tasks, with some alternatives. Or we may not. But what we need, more than anything, is the opportunity, on an equal and level playing field, to succeed or fail on our own merits, based on our own personalities, skills, talents and effort. No one should deny anyone else those growing pains and glimmers of hope, and disability doesn’t change that.