Tag Archives: advocacy

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

12 Friday Jan 2018

Posted by in blindness

≈ 2 Comments

Tags

, , , , , , ,

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.

Living in the Middle of the Road

18 Saturday Nov 2017

Posted by in blindness

≈ 2 Comments

Tags

, , , , , , ,

It’s funny, the patterns you see, when looking back. Almost exactly two years ago, I wrote a blog post about how not everything is a fight. Even though they were absolutely right on this count, the person who inspired that post had their own agenda, their own reasons to grind me down. In response to their comments – some that were accurate and some that were cruel – I tried to buckle down, to keep quiet, to not speak out about anything; in effect, I tried to become a quiet little mouse who never uttered a word as it came to perceptions of my blindness. I lost part of myself in the process. I believed most of what this person said – much of it to my detriment – and it took me years to realize that they could be right about one thing and yet still be very very wrong about everything else.

Somewhere along the way, I’ve met some amazing people who’ve helped me become a strong and forceful disabilities advocate. They are compelling and fearless and take no prisoners. I owe a great deal to them, for their willingness to stand up for people with a wide variety of disabilities – not just the unique challenges and triumphs their own disability(ies) present. They’ve made me feel welcome, and since then have encouraged me to share my perspective and kindly corrected me when I made mistakes that hurt them.
And yet, in between those two extremes, is the middle of the road. In many ways, I’ve found myself swerving from one extreme to the other, using bravado and force to overcompensate for the pain of passivity, of having my face shoved into the shoulder of the road.
Recently – and it’s not the first time – a loved one told me that I shouldn’t be upset when someone is surprised that I hold the job I do, and chooses to express this shock with sickly-sweet tones that one usually only hears directed at very young children. This was on top of a bunch of other little things that made the whole day just go sideways, even if nothing itself was earth-shakingly bad. To be honest, I’m still reeling from the comment itself, and the later understanding that I’ve been overloading a loved one with too-frequent complaints about how people respond to my blindness. They have the luxury to decide whether or not to hear about it; but it is such an integral and frequent part of my day that I don’t think twice about sharing it. In the moment of impact, it just didn’t feel fair.

But is it really unfair when I am expecting them to help carry my own burden for me when they’re not willing or able to do so on a regular basis? If I expect understanding from others, should I not offer it in return?

I chose to take that hurtful comment and seek out some self-reflection with the help of trusted friends. As of right now, however, I have no easy answers.
Have I been angry?

Yes.

Have I had cause to be angry?

Yes.

Do I expect others to be angry on my behalf?

If I’m honest, yes. Because I highly doubt they’d put up and shut up about being denied opportunities, infantilized, bodily manipulated, and underestimated on a very frequent basis.

Is that reasonable?

I don’t know.

Is it reasonable for friends and family to not want to hear about it all anymore?

I don’t know. I can’t choose to ignore it all, but I can choose when and with whom I open up these dialogues. It is my responsibility to be considerate and not over-burden loved ones with my own emotional baggage, no matter how reasonable and justified the baggage is. But it is also theirs to remember that no one likes their bruised feelings and interpretation of events dismissed out of hand, especially when they’re releasing some pent-up tension, as we all do.

Is it understandable for frustrations to boil over into a lack of empathy, cruelty and harsh words?

Yes, on both sides of the issue.

So what does this mean for me?

I don’t know.

 

My blog May look different in the coming weeks or months. Maybe I will take a break. Maybe I’ll do something radical and remove myself from disability spaces. Maybe I’ll do none of these things. Maybe I’ll do all of them.

I doubt I will ever be content sitting on the sidelines long-term, because allowing others to speak for me will limit my own opportunities, and those for the people who come behind me. But I can’t keep swerving between hostile aggression and docile compliance, because neither accomplishes anything. And I can’t keep coasting through, keeping my head down, allowing my presence alone to be an example, because where I am and what I do are only part of my story.

So I’m going back to the proverbial “driver’s manual”, to figure out the best advocacy “vehicle” for myself and my loved ones. Maybe I change what I say and how I say it. Maybe I choose my battles more carefully. Maybe I emotionally check in with my friends and family to see if they’re in a space to carry a particular burden with me. Maybe I take some time out to just exist, particularly on days where everything just goes sideways and I wouldn’t respond objectively anyway. Maybe I have all the tools I need, but I need to teach myself how best to use them. I’m not doing anything drastic, nor will I suddenly become a door mat.

But I am so very tired, on all fronts.

And maybe for now – on this leg of my journey – it’s time for someone else to take the wheel for me.

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

04 Tuesday Jul 2017

Posted by in blindness

≈ 2 Comments

Tags

, , , , ,

*** 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.

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

26 Friday Aug 2016

Posted by in blindness

≈ 1 Comment

Tags

, , , , , , , ,

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

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

A Burger with a Side of Discrimination, Please

05 Friday Aug 2016

Posted by in blindness

≈ 7 Comments

Tags

, , , , , , ,

Not long ago, I was visiting British Columbia, a province with a very well-publicized and shiny new Service Dogs Act. My trip was generally a positive one, until I attempted to enter one particular bar/restaurant that I had previously frequented. I’m not unfamiliar with being asked for ID to verify my age in such places, and even my (thankfully relatively) few access challenges with my guide dog have primarily been handled discretely and/or quickly. What I did not expect was to be demanded, loudly and publicly, for my guide dog’s paperwork… from across the bar. My dog was doing nothing inappropriate, was guiding me into the restaurant, her nails slightly struggling to gain purchase on the slippery floor. So… I was demanded – loudly and publicly – for paperwork that no one else in the restaurant was required to produce. Long story short, I realized that I didn’t have current ID with me (I had mistakenly packed an expired school-issued ID card), and I was asked to leave. When I told the employee she should consider discretion if she had to request paperwork from paying patrons, she acted so surprised that such a thing would be requested of her.
Without getting into the nitty-gritties, I contacted the BC government on this issue. They ended up responding to my complaint with an inaccessible PDF (one that was scanned as a picture, so no readable text for a screen reader), which said – basically – that since I didn’t have a piece of plastic (whether issued by the government or a guide/service dog program), a business was within their rights to refuse service. They did not address the humiliating and embarrassing experience of being demanded publicly for such information and then publicly being told to leave.
Where is the outrage outside of the service dog and/or blind community? Would anyone else be expected to accept this treatment?
Last week, a news story made the rounds about a teenager with a disability who was purposefully excluded from a relative’s wedding because of her disability. The support on sites like Reddit came in fast and furious, which is awesome… but it got me to thinking: Where is the support from the public when people with disabilities are turned down for jobs (whether stated or implied) because of their disability, forced to alter their academic pursuits or undergo additional testing, find it easier to obtain resources to assist in their death than aids to live life, are killed for simply being disabled?

There is open discrimination in the world – being told you won’t get a job because of your disability (yes, this happens). There is invisible discrimination where it’s implied by the subtext of a conversation or interaction that your presence, request, or concern is not wanted or valid (yes, this happens, too). There is violence against the disabled as can be evidenced by interactions with police, the murder in Japan last week, or by cultures who view disability as a curse on a family. While disability can have its own limitations (at this point, I won’t be driving a car anytime soon); but I believe that it’s not disability that holds us back as much as perceptions and demands of others. To some, not eating at that particular restaurant may be a “little thing”, and I suppose it’s true because we had other options. But what if we didn’t? Maybe that young girl loved her aunt and really wanted to be at her wedding for that special day, and she got slapped in the face because of a perception of what she could and couldn’t do. Judging by the amount of tense family gatherings I’ve witnessed and heard of, discrimination – even by a family member – is a pretty big deal. And how big a deal is open or invisible discrimination in the job hunt when it directly impacts one’s ability to make a living and contribute to a local, national or even global economy? And if we can’t access facilities like everyone else, attend family functions, obtain employment if we have the desired qualifications and skills, do we reach a tragic end because we just don’t belong? To quote a friend of mine, I’ve been gifted a double portion of stubborn. Maybe this will help me, maybe it will help others. It’s never “just about a restaurant” when you’re made to feel scrutinized for simply walking or rolling through the door. It’s never “just one day” when you get told that you, specifically, are not welcome at a celebration, but your whole family can come along now. It’s never “just one job” when you get told there’s no way you can do job tasks you’ve honed over years of practice and hard-won experience.

And it’s never “just one life” when you have to fight not only others’ perceptions, bureaucratic red tape, medical concerns, and discrimination… but yourself underneath it all. Sometimes being who we are is a radical act of defiance.

Relax! It’s Independence!

22 Friday Jul 2016

Posted by in blindness

≈ 3 Comments

Tags

, , , , , , , ,

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

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

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

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

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

The Empowered Series: Alberta Service Dog Community

15 Friday Jul 2016

Posted by in The Empowered Series

≈ 1 Comment

Tags

, , , , ,

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

 

About Sam

 

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

 

About ASDC

 

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

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

 

More than a Support Group

 

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

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

 

So what does Sam… Do?

 

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

 

What’s Next?

 

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

 

Conclusion

 

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

Why Green Peppers are evil: Doctors, Drama and Disability

28 Wednesday Oct 2015

Posted by in blindness

≈ 7 Comments

Tags

, , ,

Several years ago, I decided to donate blood.  A friend had done this several times, and had said she would go with me and donate blood at the same time I did.  At the best of times, I’ll acknowledge that I’m not comfortable with needles (even a flu shot creeps me out), but I thought that donating blood was such a worthy cause, and my friend would be with me… so we filled out the paperwork, and got prepared for the donation.  I distinctly remember sitting in the chair and the needle going in to the crook of my arm… and a boiling hot sensation traveling the whole length of my arm from elbow to wrist.  I yelled for them to remove the needle – I think the words were “Get it out!” – and several workers told me that it was OK, it would only hurt for a second.  Some of the longest five seconds of my life passed before me, arm still feeling like someone had scalded the inside with hot water, still screaming for the needle to be removed, before my wish was granted.  I was shaking and crying, and the next ten minutes, over the post-donation juice and cookies, several well-meaning workers came by and told me that it was OK, that lots of people couldn’t handle needles.  Humiliated, my friend and I left the blood donation clinic, and I’ve never been able to muster the courage to try again – not because of fear, but because my cries of pain were treated as a simple discomfort with the needle.

 

Would this perception have been the same had I been sighted?  I can’t say for sure.  But over the years I have found myself in situations where medical professionals either “get it” and treat me like an adult… or they don’t.  Many people I know have more experience than I in this regard, and I am more than willing to be called out as a medical-professional novice.  Thankfully, the majority of my experiences with the medical profession have been positive.  The one glaring exception was an orthodontist I saw when I was in my mid-teens, who constantly spoke to my mother and not to me during the entire 1.5 hour preliminary consultation.  Even though my teeth were the ones to be worked on, and I was the one answering questions, in his eyes I was a child – a blind child at that – and thus not worthy of the courtesy of being addressed directly.  The whole experience soured me on orthodontists for several years, until I knew I could not wait much longer.  Fortunately, my dentist referred me to a terrific orthodontist who allowed 22-year-old me to be responsible for the care I received.  He offered his opinions, I accepted some, chose alternatives for others, but I had the facts in hand and made informed choices about my own dental care.  Maybe it’s because I came to my appointments alone for the first few months, but I was viewed as an autonomous adult, with preferences as to how I wanted my orthodontic treatment to go.  It didn’t all go as planned, but I felt like I was a member of my own orthodontic team.

 

Over the years, I have accompanied friends, family, or my husband to medical appointments or emergency rooms, and have witnessed first-hand how the blind can be treated differently from the sighted.  It can sometimes be demoralizing and frustrating – having doctors or nurses speak to one’s spouse/friend/parent and not to the one person whose body is being examined – and any time I need to go to a new medical professional, a little piece of me worries in the back of my mind about whether I will be spoken to, about, or over by front-line staff or – worse – by the doctor/dentist/physiotherapist themselves.  So this afternoon, when I sliced my finger while cutting a green pepper, not only did I worry about the possibility of stitches (FYI, I get the creeps just writing this) but whether at the hospital I would be treated like a child or the adult that I am.

 

I was cooking chicken alfredo.  The pasta was cooking, I’d sliced broccoli and mushrooms, and was about halfway through slicing the green pepper when the knife slipped and cut my left index finger.  It started bleeding like crazy, but didn’t hurt much yet.  I ran it under cold water and waited to feel… something.  My husband grabbed Jenny’s emergency kit, used half a roll of gauze, wrapped my finger and bandaged it.  We were out the door so fast that we left Jenny at home alone without dinner.

 

At the hospital, we were directed to the triage area.  The greeter at the front door directed most of her comments over the next little while to my husband, and I had a little bit of a sinking feeling in my stomach, like I was invisible, even though I was the one who was injured.  Thankfully, from the nurse who took my blood pressure and temperature (and removed Ben’s bandage masterpiece), to the one who took my personal information, to the doctor who gave me a band-aid and sent me home, I was addressed directly for all medical and personal information.  Sadly, this is not always the case.  Sometimes the person who accompanies a blind person to an appointment for moral support is addressed as though they are our carers; sometimes our choices or preferences regarding our own health care are swept under the rug because we are simply not medical professionals.  And sometimes, like today, a blind woman with a bandaged finger is treated like a woman with a bandaged finger; it’s sad to say that such treatment tends to be so rare that I have a new spring in my step this evening.

 

And just in case anyone was wondering, Jenny did get her supper… and green peppers are evil!