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My Sorta Kinda Maybe (in)Accessible Life: A Lot to Unpack…

10 Friday Jun 2022

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It’s been a while… I know. There’s been a lot to unpack, both literally and figuratively (more on that in another blog post). But I had some pretty interesting experiences in the month of April, culminating in racing my most recent half marathon. And, in an emotionally complicated twist… I received something for free because of an inaccessible system.

Work: Nothing New to Report

I spent the second half of April back in the office. It felt both exciting and surreal, and with the benefit of hindsight it still does. I did, however, have to outsource use of GWS #2 ($50); to be honest it’s getting really old. Apart from that, I’m getting annoyed with the changes they made to GWS #3 – finding anything on there is like a technological maze! (you need THIS information? click on this button and then that link and then maybe you can have it). But, as much as I can shout about intuitiveness being part of accessibility, I can honestly say I could do everything I needed to.

1 outsource: $50

Let’s go Shopping!

I was super excited to attend a local rock and gem show at the end of April. It wasn’t far from my house, and wouldn’t be hard to get to…

Except…

The address for the venue could easily lead one to thinking it was on the street. But there was a big sandwich-board sign directing traffic through a parking lot, behind another building, and facing the street half a block east. There was nothing on the event web site or web page indicating this, and there would be absolutely no way to get your friend who uses a wheelchair into the building…

At the show, I found some amazing stones. I bought a stone I planned to use for a project I’ve been unable to complete for the past several months, was able to touch carved stone statues (I almost brought home a carved jaguar that was AMAZING but would’ve been really heavy to carry home!), and bought a strand of beads that I still maintain will work perfectly with some of the new awesome presents that came in a care package my Mom sent me when we were stuck inside. People engaged me in respectful conversation, pointed out all kinds of neat tactile things, and seemed happy to be out at the show.

At one vendor table (the one with a carved German Shepherd-type dog), I had a lovely conversation with the couple staffing the table. There were stones that I liked, and some that did nothing for me. I had several stones in a bag, and went to pay… And the tap on the credit card reader wasn’t working (apparently it was a thing for most of the weekend). The man behind the counter handed me the machine…

And it was a fully touch screen machine.

Fully touch screens are not accessible for a blind person. Unless the credit or debit card reader interacts with a cell phone, there is no audio feedback telling you what’s on the screen, and no way to enter your pin number without providing it to someone else. I put my would-be purchases back down on the table, apologized, and was about to turn and walk away.

The couple wouldn’t hear of it.

“It’s our machine that’s the problem,” the man said. “The tap feature has been annoying all weekend, and it’s not like you should be telling anyone your pin.” he handed me the stones, and even when I offered to see if my debit card would work with the machine, he refused to take payment for them.

I’ve been on this planet for more than thirty years. I’d like to think that I can tell a “pity present” apart from a small gesture of generosity born of a unique combination of circumstance. I read this situation as the latter. I thanked the couple profusely, put the stones in my bag, and continued enjoying the show.

10 minutes of aimless wandering: $2.50 MINUS gifting of stones = a debit of $22.50

Traveling: I’m Leaving on a Jet Plane…

I was telling my partner recently that I have traveled more in the past six months than I had in the past two years. I visited my family over Christmas, and then, in late April, I flew to Vancouver for my first in-person race since 2019 (Hypo kinda counts… but it’s not a racing race… there is a difference!).

I got a ride to the airport, and was able to find security with no problem. Unfortunately, there was another passenger with a small dog that took a lunge at Jenny while we were waiting in line. I was so startled, and couldn’t breathe. Security was kind, and let me know what had gone on (in short, the small dog came at my dog out of nowhere, and my dog was trying to evade it). They offered me a chair and a glass of water, and once I calmed down I was able to go through security.

I don’t know if anyone else experiences this… but I’ve been asked a lot recently if security can “take my phone” so they can scan my boarding pass. I’m not comfortable with this – I don’t know who they are, and I like knowing exactly where my phone is. unfortunately, one agent tried to argue this point with me – “I’ll take your phone” and “How about you give me directions to where to swipe” to “But it would be easier if…”

Because I travel with a service dog, my hands get swabbed every time I go through the airport. This time, something on my hands triggered the censors, so my bag to put through secondary security screening. The agent was describing everything she was taking out of my bag, and putting it back right where it was. I still don’t know what triggered the censors, but let me tell you I was very glad to get on that plane (though less so when I realized the little dog from the security line was five rows in front of me).

10 minute Security screening delay ($2.50) + 5 minutes arguing why handing over my cell phone to a random person in the security line is a bad idea ($2.08 – that’s it?) = $4.58

Health and Fitness: Back to the Start Line

I’ve written before about running my first half marathon, so I won’t rehash that here (seriously, go read that post!) But it honestly felt like Vancouver was another first half-marathon for me. I had no idea what to expect, since I was putting my body through a whole new stress since recovering from COVID/not COVID. But I was ecstatic!

But before you can get to the start line, you need to get your race package. Depending on the size of the race you register for, you could be picking up your package at a local shop, a community centre, or (in the case of Vancouver) a convention hall. The hall was big, crowded, and was designed to make you go ALL the way around every single exhibit to get the pieces of your kit: Race bib (100% required) at one table, gloves (which I didn’t realize until I got home hadn’t come in the bag with my bib and other odds and ends) at another, race T-shirt (optional, depending on how many races you’ve run) at a tent at the far end, and (because I just like to be difficult) my Run Happy singlet at another table. I’m glad I didn’t go alone, because that was… not easy!

I can only imagine how much effort and organization it takes to put together a race of this size – I felt overwhelmed figuring out how my parents would connect with each other and with me and my guide on race day morning. Since I don’t drive and don’t know Vancouver well, I wanted out of piggy-in-the-middle – I just held my phone while everyone coordinated their wheels. And I am eternally grateful that everything there went off without a hitch.

Once we got to the start line… that was another story. The race was started an hour late due to a suspicious package found on the race course. Because of the delay, my guide and I thought we could make one more trip to the porta potties before we took off running. No sooner had we reached the line than we heard that the race would start in three minutes. The Canadian national anthem was sung, and the elite runners took off, as we wrangled our way into the crowd. We weren’t in our starting corral anymore (where you start the race based on your optimistic finish time), but we just decided to enjoy the journey… what else could we do?

It wasn’t pretty. It wasn’t fast. It wasn’t even particularly consistent. But we met runners on the route – the woman from the Netherlands who asked if she could take our picture and share it with the blind running group there (yes!) and the runner we traded places with five or six times on the route, to the dozen people who called me inspirational as they ran past me (for the record, that feels weird).

And I gutted it out. I think COVID/not COVID affected things. I think the late start affected things. I think – and know – I can do more. But I am proud of that race in a way I don’t know that I would be proud of my fastest Half.

But once you complete the race… you have to get your stuff. At the start line, you find a table based on your bib number, and your stuff gets put on a bus to the finish line. So while you’re exhausted and hot and wanting to drink a gallon of water and eat a massive bag of chips (just me?), you get to navigate a throng of runners and supporters and find the table with your stuff on it – again, not a thing you can do without sight. Thankfully, the bags are all see-through, so it’s very easy to describe the bag’s contents in the event that your bib number falls off the handles.

I’m coming back to the “you’re so inspirational” comments I received on the race course, because, while they have always sat funny with me, they’ve never sat that heavy and awkward as they did on May 1. It’s not like you can have a long philosophical conversation about how inspiration porn is icky and gross, but my lack of sight doesn’t make me inspirational. It really REALLY doesn’t. It does contribute in some unique ways to how successfully I can run – sometimes finding guides for training runs and races is a challenge, the location of training runs can make transportation an issue – but I had to fight a lot more than blindness to get to that start line. COVID-not COVID was terrible, and took every ounce of energy I had. I’d been dealing with burnout for a very long time (if I am being honest, I think I’d tried to outrun it when I was running flat out in 2019). But we all have our stories of why we run, and what gets us out there; and maybe I’m just frustrated that all people see is woman who can’t see goes running. For the record, that’s boring. And because I couldn’t say that a dozen times on the race… I’m saying it here.

How do you put a dollar value on this? Honestly… you can’t.

The Bottom Line

The end of April (and beginning of May) saw me stronger than I thought I was. but I did experience some hiccups along the way. I’m respectfully submitting an invoice in the amount of…. $32.08.

A comment was left on a previous post that maybe I am undercharging for work I have to “outsource” because I should be able to do it myself but cannot. I think I agree. If anything, this exercise has taught me that we can (and should) put a value on our emotional labour, and the time and loss of dignity we experience based on societal perceptions and inaccessible design. But we can’t really put a dollar value on it… can we?

Oh, and in a happy coincidence? The day this post was published, I got an email from my mortgage provider – the one whose inaccessible web site started this experiment. They have overhauled their web site, fixed the issues with screen reader access, and plan on rolling out a full update next week. As of this publishing, I was able to access all the features of my mortgage.

Sometimes, if you speak up, someone somewhere is listening.

My sorta Kinda Maybe (in)accessible Life: The More Things Change, the More they Stay the Same

22 Friday Apr 2022

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It’s been two weeks since I last checked in here. So much has stayed the same, but things are starting to pick up, especially now that I have the energy to actually do anything more than the absolute bare necessities (thank you very much, covid/not covid!)

Getting out There

Once I was legally permitted to leave my house – in addition to actually having the mental and physical capacity to do so – I couldn’t wait to get out and do things. Exciting things… like going to the pharmacy to fill a prescription, or the bakery the last possible day they were open before closing for Passover. But heading out to pick up a couple things from our local Buy Nothing group proved to be less intuitive and more frustrating than anticipated.

My first “gift” from the Buy Nothing page was a microwave chip maker. It came in its box – practically brand new! – with two trays and a slicer. My Buy Nothing group is in a fairly small area – I can technically walk anywhere to pick things up. However, this area is very easy to get lost in. An avenue suddenly curved slightly and became a street. There was no simple way to tell where along the block the house was located, as the “block” was broken up by multiple avenues (1 Ave, 1A Ave, 1B Avenue). Thankfully, I was able to text the giver, who came out and met me on her sidewalk. I’ll do anything for chips – even get myself lost in a neighborhood that’s supposed to be on a grid pattern!

The second gift was a smart plug – ironically located only a handful of blocks from the chip maker. Knowing the avenue curves and turns into a street, I thought I was prepared for being able to locate the house easily. Not so much… GPS said I was at the house a full two blocks – at the far end of an avenue and a street and around a corner – before I made it there. I loaded Aira to provide visual information since GPS proved useless. After ten minutes of angling, trying to read house numbers ($2.50), a smart plug was in my hand. Unfortunately for me, I still haven’t been able to get my phone to recognize it, and it sits unused, waiting for a time when I have the patience and energy to find some obscure solution I haven’t tried half a dozen times yet.

10 minutes of house locating: $2.50

Work

My second week of working from home felt more like putting one foot in front of the other, and just doing the best I could with what I had. However, what I did learn was that Government Web Site (GWS) #1 – which is mostly accessible, still has that hiccup when certain conditions are met. I was over the moon when I got an email about those conditions that normally means someone else has to click stuff for me, and found I was able to use a touch screen to access information that is not accessible with a keyboard. However, this is definitely not a truly accessible solution – it feels like I have to stand on my head and click my heels three times; without a touch screen, every now and again someone else has to drop everything to help me out.

GWS #2 is still not accessible. Unfortunately, I have twice needed to use it (read: ask someone else to access it for me). I have even spent ten minutes trying to use GWS #2 with the touch screen on my computer (the one that made GWS #1 usable), and even my phone… No dice.

GWS #3 has always been a fully accessible system. It is not overly intuitive – which I honestly believe is part of accessibility – but I have the ability to input and access all the information I need. I used this web site twice over the past two weeks, and ran into zero issues at all.

When my colleague and I set up our accounts on GWS #4 earlier this week, I was told that it had a blue button, and did not look dissimilar to GWS #2 – even the login and setup process was similar. The dread I felt was so powerfully intense… as was the relief I felt when I was able to access all edit fields and buttons completely independently. I guess you can’t really put a price on anxiety, can you?

2 X “outsourcing” = $100; 10 minutes trouble shooting $2.50

Health and Fitness

I am running a half marathon in ten days. Covid/not Covid put a damper on my training, so I have no clue what the race will be like. But my main social outlet is running and runners. Depending on the day, the distance, and the ability and willingness of humans to guide, I can either run independently with Jenny (who is still willing to run!) or I run with a friend guiding me by using a tether. My main running tracker is an app whose android app finally – six years after I started using it – labeled the buttons on its tracking screen. I had previously labeled the buttons myself, but new app updates or resets always reset the labels, too! Being able to just tap a button has taken a load off I hadn’t realize I had been carrying.

Another app I am excited to try is the Revision Fitness app. It’s been developed by a visually impaired Paralympian, and at first glance all of the workouts are fully described – something that’s generally missing from most workout apps on the market. I had planned to use my free trial during the first week of April… and we all know how that went.

Home and Personal Care

Last week, one of my favorite bath and body shops (L’Occitane) had a huge sale on their entire store. I scooped up some old favourite products, and decided to try a few new ones. When my box arrived, I was happy to receive my pampering items, but a part of me was disappointed, too. L’Occitane’s foundation has proclaimed that they are committed to labeling as many of their products as possible in braille. For years, I have purchased products, knowing that I could read the label on the bottles of shower gel or cardboard sleeves around a perfume without even having to use my sense of smell at all. Even their travel bottles had their full product name (“Cherry shower gel”, “Lavender Foaming bath”) on the bottles. My new products just said “shower gel” without any other identifier. I think it might be a blip – I’ll probably treat myself around my birthday this summer – but having something that’s so accessible be changed in such a way felt like something had been taken from me. Imagine going through your pantry, and your boxes of crackers – instead of saying “Ritz” or “Wheat Thins” or “Triscuit” – every box in your pantry just says “crackers”. Could you open your box and smell the crackers? Sure! Could you shake the box to determine your choice by weight? Of course. But the simplest way to tell your items apart is to read the label on the packaging. As it stands, I placed an elastic band around one “shower gel” to tell it apart from the other “Shower gel.” Now I just have to remember which one has the elastic!

I finally got the hang of the Covid test thing. I got to the point where over a 4-day period, I only needed fifteen minutes of Aira (read: working eyeballs!) to read my Covid test results. Still all negative, thankfully!

I’ve also chosen to not do business with a local business because their web sites are not accessible. One web site had a contact form that wouldn’t let me select anything in a drop-down menu – keyboard, touch screen, it didn’t matter. I spent fifteen minutes trying both, in case I missed a mandatory field. But nope… if there was a drop-down menu, I had no access to it. I seriously debated contacting the business/web site provider, but it was in the middle of Covid/not Covid, and I just didn’t have the mental energy to explain that I was really just trying to get in touch with them, and by the way I was having challenges accessing their web site, so would they mind fixing it so I could give them my business? I decided against this approach for two reasons: (1) I have other options out there for that particular service; and (2) the company mentioned a heavy reliance on technology, so I wasn’t confident that accessibility wouldn’t be an issue during our entire business relationship.

15 minutes of test result reading ($3.75) + 15 minutes of inaccessible web site navigation ($3.75) = $7.50

The Bottom Line

If it looks like I am throwing a pity party, I’m not convinced I’m not. I thought this exercise – quantifying the “little things” in my day that make this blind life harder – would be interesting and informative. Instead, while I am grateful for the things that put me on an equal playing field, I’m seeing how very very far we have to go.

I am respectfully submitting an “invoice” in the amount of $112.50 + a box of elastics.

My Sorta Kinda Maybe (in)Accessible Life: The COVID/not COVID Edition

08 Friday Apr 2022

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When I first conceptualized this experiment, the one thing I didn’t expect was life grinding to a screeching hault! I received word over the weekend that I had come into contact with someone who tested positive for COVID-19. And, what do you know! I had symptoms! So… I got to go approximately nowhere, and see approximately no one.

But after a week of fatigue and brain mud… I still had a few hiccups along the way.

A Quick Adjustment to Calculations

In my initial post, I provided a monetary value for certain inaccessible systems/experiences of ableism/etc. The one thing I failed to consider was: What would I do in a situation where I had no choice but to ask someone to do something for me that I cannot do for myself… at all? Especially if it’s a thing I should – in any other instance – be able to do for myself. So, I have implemented a flat rate for those instances of $50. This is because I not only have a history of trying to work through something I should be able to do, but I need to take someone else away from their life because of it. $50 – no matter the complexity or duration of an activity – could “compensate” for my loss of dignity, as well as taking into account someone else’s time.

Social Life

Seriously, what social life? I’ve been stuck at home for nearly a week! I did attend a restaurant last Friday to celebrate my partner’s and my third anniversary. The menus were accessible online, and the staff was great (read: not patronizing or weird). No unpaid emotional stuff here!

Around the House

For someone who has lived for two years during a global pandemic, I’m surprised I haven’t had to take a COVID test before now. A friend dropped off two tests for me on Sunday. I found the instructions for the test confusing and clunky, though I could read the information online or on my phone. However, I was not able to read the test results myself.

Over the past six days, I have taken six COVID tests. For the record, they have all come back negative. Over the past six days, I have spent 80 minutes using a service called Aira (an online service that connects blind people with employees whose eyes work better than ours and who provide visual information that we cannot see). The fact that Aira has a free promotion for COVID-related tasks and information is hardly the point. I can’t access my test results independently and privately (the same is true for pregnancy tests, for the record).

80 minutes at $15/hour: $20

Work

I love being able to work from home, especially feeling like this! This makes me blessed and privileged, and I don’t take that lightly.

Did you know that PDF documents – particularly ones that are scanned – are often not accessible to screen reader users like myself? This is because they are usually scanned as images by default. In order to read any PDF that gets sent to me, that involves a – paid – upgraded license of Adobe. Wait… Someone needs to pay so that I can read standard document formats? Yup! If I wanted that same functionality at home, I would have to pay $20 per month. I’m adding this to my ledger because it’s absurd.

I regularly use government web sites (GWS) in order to do my job. GWS #1 is mostly accessible, except when certain criteria are met. I ran into such a situation with GWS #1, where I could not physically click a link myself and had to get someone else to do it for me ($50). Once that was done, I was ready to run, but still I couldn’t do this thing myself and had to “subcontract” someone else.

GWS #2 presented a whole other problem. A few months ago I had an extremely long conversation (a total of 2 hours – $30) with the developers of GWS #2. It came to light that because I use a screen reader, GWS #2 doesn’t play nice (with any screen reader); the presence alone of a screen reader means that I have no ability to use GWS #2 at all. Even after a minimum of two new releases, GWS #2 is still inaccessible. I was placed in a position this week where someone else had to use GWS #2 for me ($50). I am blessed to work with understanding people… but what if I didn’t? Thankfully, most of the rest of my work-based activities are intuitive and accesible.

2 outsourced tasks from GWS ($100) + 2 hours of troubleshooting with no results ($23) = $130

The Bottom Line

I made it through this week, and I am none the worse for wear. On the (in)accessibility/emotional labour front, I respectfully submit an invoice in the amount of $150.

“We don’t Serve your Kind Here”: On Restaurants and Accessibility

21 Saturday Aug 2021

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I am fortunate. I’m privileged to be in a city with a vibrant food culture, and the financial means to regularly treat myself to meals I don’t have to cook. Over the years I’ve sat in restaurants that have had various nods to inclusion and universal usability. But now that I’m thinking about it, there has almost always been some form of a barrier to access – either my own or for someone I’m with.

Getting in the Door

I must admit – to my shame – that I don’t think much about getting inside a restaurant as a barrier to access… but why wouldn’t it be? Getting through the door could be interpreted a variety of ways. Can your customers get to your location by many means of transport (safe pedestrian access, public transportation), or is it only accessible by car? What about getting inside? Is the door heavy, or does it open easily or automatically? Are their smooth access points to the building, or are their any steps to come inside? Neglecting any of these considerations could actually decrease your customer base, because it limits access to those who can drive (or pay for taxis), or are reliably ambulatory on two feet.

So, We’ve come inside… Now What?

So, you’ve got the perfect location, and barrier-free access to the building… That’s awesome! Can everyone enjoy your hospitality? Are your tables at varying heights? Is there enough space to navigate a wheelchair or walker or service dog or stroller between them? Is there enough quiet space for conversation to be possible, or for breaks from a sensory onslaught? How about menus? Can the menus be accessed through smartphone apps, braille, or large print? Is the lighting bright enough so your entire customer base can read them without squinting, or just asking the server for recommendations? Are the washrooms easy to access and navigate? Is your staff trained on local or federal laws regarding service dog access? In my own experience, at least one (and usually several) of the answers to these questions is “no.” And, as before, this either decreases your repeat customer base (at best), or provides a seriously negative experience (at worst).

“Why the Third Degree? You Aren’t my Only Customer!”

You could be reading this piece, wringing your hands, thinking that you have a hundred other things to think about rather than five hundred questions about access to your restaurant. After all, if I don’t come to your place of business, there’s always someone else who’ll take my place. You don’t have a ton of wheelchair users, or blind people, or people who use service dogs, anyway. You’ll serve us if we’re there, but systemic change… that’s just too hard and complicated, with too few returns. You may not post a sign saying “disabled people not welcome” (if you did, that would be illegal!) but the unspoken language of many eating establishments speaks just as loudly as any posted sign. This begs the question: Are disabled people (one of the largest minorities in the country) not showing up, or have we been denied access?

There Is a Better Way

Just this afternoon, I stumbled across a New York Times article reviewing a universally accessible restaurant in Harlem. The author brought a guest (a wheelchair user) who described the experience – from rolling from the sidewalk into the front door to the table at the correct height to eat at – as “a dream.” Even something so simple as easily accessing a washroom was seamless… and the one concern that was raised was addressed within minutes.

I recently celebrated a birthday. To support the animal rescue for which I’ve volunteered since the start of this year, I purchased several auction items which coincidentally included a gift certificate for Paddy’s Pub and Kitchen in St. Albert. Deciding to give it a try, my partner and I hopped a bus to St. Albert, got totally lost in the terminal, crossed a very busy arterial road (OK, let’s call it what it was: a multi-lane highway), got lost, and finally found the place. From the minute we walked in, we were provided amazing service – from asking if Jenny would like some water (she did) to recommending what’s become my new favourite beer (MH Brew Company’s Creamsicle Ale) to reading the menu because their web site’s menu was graphical, and the one on Uber Eats was incomplete. I also couldn’t help noticing how wide the isle was, with plenty of space to move and to distance, and not feel like I was going to fall on top of anyone. I can’t speak for the overall wheelchair-friendliness of the place (sorry!) but it was open enough to move, quiet enough to have a conversation, and I never once felt like an inconvenience when our server read the entire (very long) menu. And the carrot cake for my birthday? That alone was worth taking an Uber home for!

This is how access should be. This is, in effect, what customer service is: making your product or service enjoyable by the widest customer base possible.

I first started thinking about barriers to access when I was meeting a group of service dog users for supper at a Red Robin restaurant in Edmonton. I’d been there many times before with friends, and loved how seamless my experiences had always been – from the always-updated braille menus I could actually read, to the unparalleled training their staff clearly received around disability. My evening went off without a hitch… until one of the other service dog users and I both headed toward the washroom. She led the way in her foldable wheelchair, and Jenny and I followed behind. The door to the washroom pulled outward – toward us. There was only one accessible stall, which my companion took, while Jenny and I squished into one of the smaller ones. The sinks were almost too high for her to reach, and I had to hand her paper towels from the dispenser that stopped just above my shoulder. To head back to the table, I went in front of her to push the door outward so she could make the sharp 90-degree turn, twice, to leave the tiny restroom. I’d considered wheelchair access to buildings before, but it seemed just so incongruous that a place that had been so welcoming to me had thrown up barriers for someone else.

I could list a hundred other examples of exclusion – from buildings in touristy north American cities like Jasper, Alberta, and New York, with stairs-only access; to eating establishments with either hard-copy paper or graphic-only online menus; to the restaurant in Bozeman that I found out later was reachable only by car across a busy highway. But rare beacons of hopeful inclusion like Red Robin, Paddy’s and Contento give me hope that more will follow their example. I realize there are some true limitations; if your place is in a predominately car-centric area, can you make your overall experience a valuable trade-off for a taxi or Uber ride there? You may not be able to alter the architecture of your building right now, but the next time you renovate you could revise a few things to make your place easier to navigate for staff and patrons alike. You can make sure your complete menu is updated and available on delivery apps that serve your local area so that patrons can access them through technology that already meets their needs. You can educate yourself and your staff on service dog laws and etiquette – which includes your actual rights as a business owner – so that I can hopefully stop reading articles about service dogs being turned away from businesses, and fear the same happening to me, my loved ones, or fellow community members. In a hundred little ways, you can post those subliminal signs that I as a customer matter. Who knows? Maybe one day you will ask this question of your fellow restaurateurs: “Are we really serving everybody? Or are we stating – by inattention, design, or apathy – that we don’t serve those people?”

It’s never too late – or too much work – to do better.

Could you Be My Eyes?

17 Tuesday Aug 2021

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I’ve written before about visual interpreting service Aira more than once. In case you missed those brilliant pieces of my wisdom (read: my personal opinion and experience), I pay Aira a monthly fee to provide visual information and assist with inaccessible apps. But Aira is by no means the only spare pair of eyes I can call in a pinch. But when I ask someone to Be my Eyes, I use that service for different tasks than Aira.

Early Be my Eyes Marketing

I’d be remis if I didn’t address the initial marketing strategy of Be My Eyes. When it first became available late in 2015, it had a really icky message. “Help the blind see!” or “Do a good deed!” The exact wording of their slogan at the time isn’t something I can recall, but it made me reluctant to use the service until such a point as they cleaned up their marketing and made blind people feel less like a charity case. Thankfully, they’ve now changed their slogan to “See the World Together”, and their outward marketing is more of collaboration and mutual benefit to both sighted and blind alike.

Universally Accessible

Be my Eyes is a free service. Basically, if you have a smart phone, you can use it. If you speak more than one language, you can use that language to request or provide assistance. I’ve primarily spoken to volunteers from my home country of Canada, but there have been times where my “eyes” are located in England or South Africa. If I just need a quick check of when my yogurt expires, or how many kilometers I’ve ridden on my exercise bike workout, I’m more likely to reach for Be my Eyes, rather than Aira.

Corporate Partnerships

One of the handy things about Be my Eyes is their partnerships with global companies in technology, blindness services, and personal care items. These partnerships use the Be my Eyes video platform to connect a blind person to an employee from (for example) Google, Guide dogs for the Blind, and ClearBlue. So if you need a hand with your Google Doc, or want a trainer to take a look at your guide dog’s behavior, or are concerned about pregnancy or fertility, there’s someone who knows the product specifically and can provide an extra bit of information without a crash course in tech or guide dogs or whatever.

A few Drawbacks

The quality of volunteers – and the information they provide – can definitely be hit or miss. I’ve had amazing volunteers who have spent half an hour with me going through all the swag in a race kit. I’ve also had volunteers who were unable to provide directions so they could better see what I was needing help with (“Bring your phone up. No… not up, but UP!”) Volunteers have been at home watching TV, or out at a club. Volunteers have been in their sixties, and I swear I’ve had more than one who couldn’t have been older than twelve. Overall, however, my experiences with Be my Eyes have been generally positive. Now, if only they could fix their bug that messes up my phone’s speaker after every call…

The Bottom line

I don’t use Be my Eyes for confidential information, or for anything that requires a third party to log into my computer to work through an accessibility glitch (I still use Aira for that). but for another tool in my toolbox – which means I’m not relying on friends and family – it’s a welcome addition. Adding their useful corporate partnerships, and it’s an app that’s sticking around. I can’t wait to see where it goes next.

Ungrateful Passenger

04 Wednesday Aug 2021

Posted by in blindness, Ultimate Blog Challenge

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“Hey, need a lift?”

If you have a driver’s license and reliable access to a vehicle, you’ve probably asked this question at one point in your life – maybe even regularly, sometimes to the same person or people.

For obvious reasons, I do not drive. I am overwhelmed sometimes by the number of people who are willing and able to drive me places. I am regularly driven to or from long Sunday runs, turning what would be a 60-minute bus ride into a 10-minute drive with pleasant company besides. A few times a year, I need to run errands where taxis or rideshares are either impractical or prohibitively expensive. Before I started my new job, I was invited to a house party in the middle of nowhere, and had multiple offers of rides to get there and back. The generosity of strangers and friends alike is something that both makes me extremely grateful, and extremely uncomfortable.

I don’t feel guilty for calling a taxi or taking an Uber. I pay the fare, the driver provides the service. When I had to provide an urgent signature for legal documents, I ordered an Uber; I didn’t want to leave anyone hanging out downtown for me to take an hour in a law office. But there’s a certain uncomfortable feeling when accepting a ride from someone you know when they are driving you somewhere, even if they have a reason to go there themselves.

There’s a certain power imbalance. The person with the wheels, the keys, and the license, has the ability to make any decisions they see fit. If the driver wants to leave before the passenger is ready to, or doesn’t want to run that errand or attend that event, the passenger needs to locate their alternate transportation arrangements – if there are any at all. If the driver wants to stay at the party, the boring meeting, the holiday dinner, then the passenger performs some form of mental gymnastics about whether their desire to leave is worth bringing up at all.

I came to this realization when discussing travel with a friend. I’ve taken multiple trips over the years, sometimes alone, and sometimes with my (now former) husband. My friend asked me what my favourite trip was, and of all the ones I’d taken, I couldn’t help but realize that New York and the intrepid Journey were, by far, my preferred trips when I take a tour down Memory Lane. Don’t get me wrong, the Epic Road Trip of Awesome was… well…. awesome! But I realized that the fondest memories I have were on trips that didn’t include large amounts of car travel. In new York, the only car trips we took were the trip to and from the airport… and the ride back to my B&B with a performing jazz band; the rest of the trip was all made on foot or by Subway, giving both my husband and I an immense amount of personal autonomy. The Intrepid Journey may not have covered as much ground, or been quite as scenic as the Epic Road Trip of Awesome, but I realized that I could do whatever I wanted, held only to the timetables of the inter-city bus trips I booked (and got canceled before traveling, but that’s another story). In both cases, I could travel when and where I wanted, go back and sleep if I wanted, try new things that would bore almost anyone else on this planet… but I didn’t require the consultation of anyone else, beyond a courtesy “I’ll be back at place X by Y time… I’ll text you if anything changes.” I wonder if this is what driving feels like; it’s just on two feet rather than four wheels.

I am truly grateful for my army of support who are more than generous in sharing their wheels. And yet I am an ungrateful passenger. I’m frustrated by the need to ask – even though a part of me knows that rides wouldn’t be offered if they weren’t offered freely. I feel frustrated by any sense of mismatch in timelines – if I’m having fun, I have the feeling like I’m keeping someone somewhere they don’t want to be; if I’m exhausted and just want to go home, I feel like I’m taking someone else away from their fun for my benefit. Maybe it’s not the wheels I resent so much, but the perceived and actual casualness that comes with possessing them.

Accepting a Compliment: Backhanded Remarks, Proposing Alternatives, and Coming to Terms with Myself

21 Saturday Jul 2018

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Not long ago, I received a compliment. It wasn’t aimed at me directly, but I was being introduced to someone, and the person making the introduction was offering me praise right after providing my name. I stood there, shaking hands, feeling embarrassed and proud in equal measure. Who doesn’t like to receive compliments? And many people are embarrassed to be praised so publicly. But the embarrassment and awkwardness seemed to overtake the pride I felt, and it took some soul-searching and question-asking to figure out why.

What made this experience different? And why am I writing about it?

As a person with an obvious physical disability, I often receive comments that are meant to be complimentary, but make me feel edgy. Often times, my disability is brought up in conversation at moments I find awkward, inappropriate, or downright demeaning. So when I receive an honest heartfelt compliment, or praise for a job well done, I almost always hear “for a blind/disabled/defective person” behind it, even when that sentiment is not there. This is why backhanded compliments are so damaging. If you encounter me – or other visibly disabled people in public – you might be tempted to say some of these things. Can I propose some alternatives? Because I think I understand what you mean… but what comes out is probably not what’s intended.

 

“You do so Well at X… I’d never know that you’re… Challenged.”

 

I’ve received variations on this comment in personal and professional settings. I’ll use jewelry creation as an example, since it’s a hobby and business that regularly surprises people. Comments such as “She’s blind, and she makes beautiful jewelry!” put my disability at the forefront, rather than the art form I’ve spent years exploring, researching, creating, and selling. No one would say “She’s tall and makes beautiful jewelry,” or “He’s shy and makes beautiful jewelry.” And yet I hear this all the time!

If you see me at a craft show, take a minute to watch me work – it’s one of the reasons I bring my kit to such events. Comments like “This is beautiful!” or “I like the colours!” are always appropriate and appreciated compliments; you’d say them to any artist. If you are curious how I organize my kit, or pick colours, I am open to questions (but please keep in mind that I can only speak for myself; other people with disabilities may not be comfortable with these questions). If you compliment my work, I’ll likely open up more about my creative process, because you respect my work on its merits.

If it’s important to you to engage in discussions about disability, please use the word “disability” (words such as “challenged,” “Special needs,” and “differently abled” are generally not favored by the disability community.)

I hope to see more conversations like this in the future:

“That’s a gorgeous bracelet! I like the colours!”

“Thank you.”

“I’ve noticed you working on something the past few minutes. You look really focused. Can I ask a couple questions about your creative process?”

“Sure.”

“Do you have a design in mind before you create? Do you ask a lot of questions before putting things together? I love how organized your kit is!”

This conversation puts the work or accomplishment front and center, values the time of the artist (in my case), and still leaves room for the reality of disability to be acknowledged respectfully.

 

“I Can’t XYZ… and I can…”

 

Comments like “I can’t do that, and I can see/hear/walk” perpetuate the harmful idea that disability alone makes tasks challenging or impossible. While this is sometimes true, these comments – that are intended to raise people up – again place disability at the forefront and devalue the task or work or craft on its own merit. Is it OK to say “I can’t run a marathon, and I’m 22.” Yes and no. While both statements might be true today, what else contributes to that reality? Do you prefer to binge-watch Netflix to hitting the gym? Do you hate running? Do family or school responsibilities take up your time?

Let’s take another example: cooking. I’ve written before about cooking as a blind person. I’m pretty no-muss-no-fuss, but I can make my way around a kitchen.

“I can’t cook, and I can see.”

Do you look at everything when cooking? Probably not. Do you use your other senses? Most chefs do. Are you often tired after a long day at work or with the kids and prefer to order in? Did you once love cooking but hit a rut and just don’t feel like it anymore? Did you ever learn the fundamentals of measuraing and cooking?

See? It’s not as simple as X + all 5 senses = capability.

A “compliment” in this vain can respectfully be handled this way:

“You’re training for a marathon! That’s great! I need to kick my Netflix addiction before I could even think about doing that. Tell me more about your training!”

And if you want to make this comment about cooking, raising kids, going to school – everyday things that many people do without getting commented on – try something like this:

“Oh, you’re making lasagna tonight. I’m tired just thinking about cooking. Do you have any secrets to get into the kitchen?”

 

“It’s SO Great You Work Here!”

 

This is a complicated and messy topic. It’s clear that people with disabilities are an untapped resource in the work force. Many people with disabilities are ready, willing, and able to work, and still face discrimination and misunderstanding about their capabilities and access needs, and are frequently turned down for jobs. So, yes, seeing people with disabilities in the boardroom, on a job site, or behind a counter doesn’t fit what is a generally accepted narrative, and it often takes people by surprise.

But when I hear how great my employer is for hiring me, it doesn’t make me feel great; it makes me feel like my employer has done me a favour, and I just don’t belong. I busted my butt for years to gain the hard and soft skills to land where I am, and my performance speaks for itself.

But I think I understand the intent, and I hope conversations about disability and employment can go something like this.

“Thanks for that excellent and thorough information! Can I talk to your manager and commend you for your excellent service?”

OR

“I realize I don’t see many people with disabilities in the work force, and that isn’t right. I’m really glad to see your employer hires inclusively. This is a change I hope my workplace can make. Do you personally know of any resources that can help make this happen?”

 

Conclusion

 

I’ve written before that “Part of communicating, and doing so effectively, is that the giver and receiver of communication both process it as intended.” The words of praise that inspired this post caused me to dig deep and realize how backhanded compliments like the ones above have hampered my ability to accept honest positive feedback for what it is. Hopefully, with this realization, I can start to move forward with grace and optimism. And I hope that these damaging comments and proposed alternatives have provided some food for thought, so that you can compliment a disabled person respectfully and effectively, even if you don’t quite no what to say.

You Inspire Me! No… REALLY!

27 Wednesday Jun 2018

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“You really inspire me.”

I hear this phrase regularly. It always makes me a little bit uncomfortable for a wide variety of reasons. Though I can sometimes hog a conversation, I really don’t like having attention drawn to me, and phrases like this make me blush. As an disabled introvert, my desire for anonymity is frequently at odds with the fact that I am highly visible because of my terrific – if sassy – guide dog.

But my own discomfort with being viewed as “inspirational” goes deeper than my desire to blend in, to go about my day, to enjoy my hobbies or go to work or meet friends for coffee.

And it wasn’t until very recently that I started to figure out why.

 

Inspiration: What it Means

 

Until writing this post, I had no idea there were so many meanings for the word “inspire.” Merriam-Webster includes phrases such as “spur on, motivate” and “to influence, move, or guide by divine or supernatural inspiration.” The Cambridge English Dictionary has a definition I particularly like: “to make someone feel that they want to do something and can do it.” There are other definitions, too. Some are archaic and are not used anymore – to “breathe upon”, for example. But others – such as Oxford English Dictionary‘s “Animate someone with (a feeling)” – make me think that this is what the general public means when they say I inspire them.

But if that’s the case… what feeling do I animate in them?

And is that all there is?

I argue that there’s more.

So very much more.

 

(De-)Valuing Inspiration

 

There are people who inspire me. Some are famous people – who made things or did things that changed the world. Some are everyday people, who show great commitment to their interests, sacrificial love to their families, and generosity to their communities. All of these people inspire me to dream big, to work hard, to learn from others and from myself, to love freely and live courageously. These are people who have made a tangible, quantifiable difference in my life. I don’t throw the word “inspiration” around much, because so often it’s been cheapened when directed at me – for no other reason than I’m a person with a disability getting out there and living my life. I refuse to devalue it – and the people I’m pairing it with – by using it in place of “I’m feeling charitable towards this person” or “this story gives me the warm fuzzies” or “this person makes me smile because they’re them.” These are nice things, in their own way, but not inspirational, especially if they wouldn’t even be talked about if there was no disability in the equation. The late comedian Stella Young put this better than I ever could.

 

 

 

Apologies for Speaking Truth

 

It appears I’m not the only one who has complicated feelings about telling someone they inspire them. A new old friend of mine just started training for a triathlon, and I recently commented on their Facebook post about how awesome and inspiring it’s been to read their journey and cheer them on through their successes. I waffled about the use of the word “inspiring”, but after some soul-searching I realized it was apt. Their story spurred me on to keep training on days when I just didn’t feel like it (which I found out last week inspired a neighbor to get out there and start her own fitness journey, so around and around it goes). In my friend’s response back to me, they told me that I inspired them by posting updates on my own running journey – even when my time and pace and distance all sucked. I can’t find the comment now, but there was something in there about “sorry to use this phrase, but…”

Just yesterday, a very close friend told me that my way of looking at the world inspired them to look at the world differently – not in a passing-glance kind of way, but in a true, worldview shifting sort of way. “I hope you’ll forgive this wording,” she wrote, “it inspires me every day.”

It broke my heart that such a lovely compliment – a true compliment from a good friend – had to be qualified like this.

And yet, I understand why.

 

Taking Inspiration Back

 

Let’s be inspired by true inspirational feats and figures. Let’s stand up and tell our friends and families how they encourage us to make a greater difference in the world and ourselves. Whether fighting injustice, raising a family, providing thoughtful commentary, training for a race, blazing new trails through employment or education or innovation, there may come a time that someone needs to hear that they are truly making a lasting difference in their little corner of the world.

If a stranger inspires us, let’s take a moment to discern why: is what they do and who they are making a difference in their world and/or our lives? If the person standing beside them did that same task or feat, would we view them as inspirational? If the answer is yes, great! If not, it’s time to examine our own thoughts and expectations – are we inspired because who this person is is truly someone to emulate, or are we placing our own limitations on them and they just happen to jump high enough to “overcome” them?

There’s a place in the world – and in our conversations – for inspirations. Let’s reserve them for people – some we know and some we’ve never met – whose example continually spurs us on, rather than brushes up against us and fades into the background.

 

Who Inspires You?

 

Since we’re talking about inspirations, who inspires you? Why? How? In what ways have they changed your life? I’d love to read your stories in the comments below!

Is This OK With You?

20 Tuesday Feb 2018

Posted by in blindness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

27 Saturday Jan 2018

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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.